providing care for families who have experienced stillbirth: a · pdf file ·...

Providing care for families who have experienced stillbirth:

a comprehensive systematic review

Prepared by the Joanna Briggs Institute, Faculty of Health Sciences, the University of Adelaide

For the Stillbirth Foundation Australia

July 2014

Providing care for families who have experienced stillbirth: a comprehensive systematic review

AUTHORS

Dr Micah Peters, PhD, Research Fellow, The Joanna Briggs Institute, University of Adelaide

Ms Dagmara Riitano, BA, Grad Dip (Psych), BHSc (Hons), Research Officer, The Joanna Briggs Institute, University of Adelaide

Dr Karolina Lisy, PhD, Research Fellow, The Joanna Briggs Institute, University of Adelaide

Associate Professor Zoe Jordan, PhD, Director of Communication Science, The Joanna Briggs Institute, University of Adelaide

Associate Professor Edoardo Aromataris, PhD, Director of Synthesis Science, The Joanna Briggs Institute, University of Adelaide

CONTACT

The Joanna Briggs Institute School of Translational Health Science Faculty of Health Sciences The University of Adelaide. Adelaide, South Australia, 5005, Australia Email: [email protected] Telephone: +61 8 8313 4880 Facsimile: +61 8 8313 4881

Stillbirth Foundation Australia PO Box 135, Annandale New South Wales, 2038, Australia Email: [email protected] Telephone: 02 9557 9070


EXECUTIVE SUMMARY

One out of every 135 births in Australia is a stillbirth. Despite this relatively high prevalence, there is a lack of clear evidence-based guidance available to support and inform healthcare professionals who provide care for families that experience stillbirth. This document represents a comprehensive systematic review conducted by The Joanna Briggs Institute for the Stillbirth Foundation Australia in February-May 2014.

Objectives

The objective of this review was to identify effective, meaningful and/or appropriate non-pharmacological, psychosocial supportive care interventions and strategies for families to improve their psychological well-being following stillbirth.

Questions

1. What are effective interventions and strategies for improving the psychological well-being of families who have experienced stillbirth?

2. What are families’ experiences of interventions and strategies aimed at improving their psychological well-being following stillbirth?

Specifically, this question examines the meaningfulness of interventions and strategies experienced by parents and families following stillbirth.

3. What is the appropriateness of interventions and strategies aimed at improving the psychological well-being of families who have experienced stillbirth?

Specifically, this question examines the cultural appropriateness of interventions following stillbirth.

Inclusion criteria

Types of participants

This review considered families who have experienced stillbirth. In this review, family has been defined as mothers and/or fathers and/or siblings and/or grandparents who have experienced stillbirth. For the purposes of this review stillbirth has been defined as the death of a baby in utero at any time from 20-weeks until immediately before birth. Studies that include parents or families who have experienced neonatal death, perinatal death (before or after birth), miscarriage, termination of pregnancy for non-medical reasons or pregnancy loss prior to 20 weeks were excluded.

Types of interventions

This review considered any psychosocial strategies and/or interventions delivered by healthcare professionals aimed at improving psychological well-being. Psychosocial interventions and strategies have been broadly defined as those that focus on psychological or social factors. Interventions or strategies that were suggested by health professionals, though not directly delivered by them, for example attending a support group, were also included.


Phenomenon of interest

The phenomenon of interest for this review was the description of the experiences and accounts of families with interventions and strategies aimed at improving their psychological well-being following stillbirth. As well as focussing on meaningfulness (Question 2), this review also enquired into the experiences of cultural appropriateness (Question 3) of the interventions and strategies. In this review, the phenomenon of interest was addressed relevant to participants’ experiences at different periods in the overall sequence of their experience of stillbirth. These were at the time of diagnosis, birth, immediately after the event, and anywhere in the weeks, months and years that followed. An initial synthesis of findings not specifically related to any one point in the overall sequence of events has also been provided.

Context

This review aimed to be multicultural in scope and data pertaining to participants in different cultural contexts were included where deemed useful to informing guidance for Australian healthcare professionals.

Types of outcomes

Outcomes of interest (Question 1) were those related to psychological well-being and included grief (normal and pathological), depression and mood, anxiety, quality of life, signs of social maladjustment (e.g. loneliness, isolation), family and/or relationship disruption.

Types of studies

Question 1 of this review considered quantitative studies including any experimental study designs as well as observational study designs including cohort (prospective and retrospective) and case control studies. Question 2 and 3 were informed by qualitative research studies including phenomenological, ethnographic and grounded theory studies as well as qualitative descriptive studies.

Method

A comprehensive search for published and grey literature was conducted between February and April 2014 across PubMed, CINAHL, EMBASE, PsycINFO, and selected trial registries and stillbirth related websites. Only English language publications were retrieved; publication date was not restricted. A manual hand search of the reference lists of included studies was performed to identify additional studies. Thirty studies were assessed for methodological quality by two independent reviewers prior to inclusion in the review using JBI critical appraisal tools. Data was extracted from papers included in the review using standardised JBI data extraction instruments. Qualitative findings were pooled using a meta-aggregative approach and quantitative data was summarised in narrative.

Results

One randomised control trial was included in the review to address Question 1; however outcome data for women who had experienced stillbirth could not be disaggregated from the study population, or otherwise obtained from the study authors. Twenty-two qualitative studies were included to address Question 2 and 3 of this review. A major limitation in the literature that was identified by this review was the lack of high-quality quantitative data to


enable identification of effective strategies for the care of families experiencing stillbirth. The quality of the included qualitative studies was good both methodologically and in the richness of the experiences presented. Methodologies implemented by authors spanned phenomenology, ethnography, auto-ethnography, grounded theory and unspecified qualitative methodological approaches. A further limitation identified in the literature was the lack of high-quality qualitative data to enable a thorough discussion of the cultural appropriateness of care of families experiencing stillbirth.

Twenty of the included qualitative studies contributed 209 findings that comprised 42 categories and five meta-synthesised findings relevant to Question 2. The meta-syntheses reflect women’s and families experiences of stillbirth across the stillbirth care continuum. They included:

Meta-synthesis 1: Throughout the experience of stillbirth; from diagnosis and also many years later, processes in healthcare and strategies for information provision and emotional support should be implemented with sensitivity, genuineness and consideration of an individual’s needs regarding care.

Meta-synthesis 2 (Diagnosis): A number of factors around sensitivity, clarity, validation of emotions, provision of understandable information and timing impact upon parents’ experience of being told that their baby has died or will be stillborn.

Meta-synthesis 3 (Induction and birth): A number of factors around sensitivity, clarity, the importance of preparation and explanation, preferences regarding timing and having time to process information impact upon parents’ experience of interventions and strategies around the time of induction and birth of their stillborn baby.

Meta-synthesis 4 (Immediately post-birth): A number of factors exist around parental decision making regarding how to see and or hold their stillborn baby and how meeting or not meeting the baby is experienced and remembered. Personal preferences, being prepared and having tangible memorabilia are important elements.

Meta-synthesis 5 (Post-birth and onwards): The experience of stillbirth is ongoing and does not occur in isolation. The need for support and care does not end immediately.

Eight of the included studies contributed 12 findings that comprised four categories and 1 meta-synthesised finding relevant to Question 3:

Meta-synthesis 6: Culturally appropriate care acknowledges the cultural system of parents however also understands that parents have their own unique preferences that may not adhere to cultural norms. Spiritual and religious beliefs may impact upon parents’ experiences and understanding of stillbirth and health care professionals can help parents access religious or spiritual support while in their care.


IMPLICATIONS FOR PRACTICE

The meta-synthesised findings from this review informed the development of numerous implications for practice which are listed below. See Appendix I for a comprehensive list of these implications for practice with supporting examples from the evidence.

These implications for practice (1-7) are derived from findings of parent and family’s experiences of healthcare provision throughout the experience of stillbirth. The evidence revealed that parents desire sensitive and supportive preparation from healthcare professionals to know what to expect at every stage of the stillbirth experience (see below). The findings in this meta-synthesis add depth and understanding to the features of care that are important and meaningful to parents throughout the experience of stillbirth. The evidence suggests that throughout the stillbirth experience:

1. Individualised, genuine and personal care is paramount. For example; parents appreciate when healthcare professionals show emotion, empathy and human reactions to their tragic experience.

2. The stillbirth of a baby is a human tragedy and an experience that should not be medicalised. It is important to remember that the parents have lost a baby not simply experienced a medical event.

3. Information provided in a forthcoming, step-by-step fashion in advance of every procedure and event enables parents to know what to expect and prepare themselves.

4. Respect and emotional validation of parents is important and understanding that being the parent of a stillborn baby does not diminish the identity of parenthood.

5. Parents may be extremely sensitive to health professional’s communication styles and behaviour. Healthcare professionals can either inadvertently distress parents with disengaged or poorly worded communication (for example by seeming rushed or cold) or can make parents feel nurtured and supported by offering simple gestures of care and empathy. Some examples are physical contact such as holding the mothers hand and comforting parents with warm and genuine language, for example saying ‘I’m so sorry’ and reassuring parents that they are not to blame.

6. The decision to perform an autopsy or other post death investigation is challenging and parents require information to help them decide whether or not they would like such an investigation performed if the cause of death is unknown. When the cause of death is unknown, parents can often be distressed and confused; knowing the cause of death seems to reassure many parents.

7. Training for health professionals is important and can better prepare them to offer appropriate support to parents and families affected by stillbirth at every stage of the experience.

These implications for practice (8-12) are derived from findings of experiences of healthcare provision at the time of diagnosis. The evidence revealed that communication, particularly


the way the diagnosis of stillbirth is conveyed, is a key factor that can impact upon parents’ experience of care and their psychological well-being. The evidence suggests that at the time of a diagnosis of stillbirth:

8. Communication that is warm, sensitive, genuine and reassuring is important. Blunt, disengaged styles of communication and information provision can cause distress to parents and their families.

9. Clear and understandable language and explanations from health care professionals is essential when parents first learn that their baby will be stillborn. Information provided to parents should be presented in a way that is mindful of parents’ emotional state and with realisation that parents are likely to be experiencing a potentially compromised ability to take in and process information.

10. Presenting information in a stepwise manner is valuable, preferably in a way that is respectful and that validates parents’ emotional experiences. Disregarding or diminishing parents’ emotional experiences may lead to them feeling isolated and distressed.

11. Where clinically appropriate, minimisation of unavoidable delays or ambiguity in informing parents’ of the death of their baby are critical as these will be experienced and remembered negatively.

12. Continuity of care is maintained following the initial diagnosis of stillbirth. Parents often wish to continue to see the same health care professionals after the initial diagnosis and have the same staff involved at induction of labour as those at the time that stillbirth was diagnosed.

These implications for practice (13-20) are derived from findings of experiences of healthcare at the time of induction of labour. The evidence revealed that the provision of clear information and shared decision making about the lead up to and process of birth is very important. At this time sensitivity and respect on the part of the healthcare professional and provision of emotional and psychological support are also key elements. The evidence suggests that at the time of induction of labour:

13. Parents require support in the form of clear and incremental verbal and written information and explanation of the induction and birthing process tailored to their needs in order to minimise the impact that their emotional state has on their ability to process information.

14. Confusing or confronting medical terminology regarding stillbirth (for example ‘product of conception’ and ‘termination’) and various hospital processes (for example, making parents feel as though they need to sign paperwork before they feel that they are ready) may be distressing to parents.

15. Attitudes and communication styles at the time of birth that are warm, supportive and genuine are important. Insensitivity or judgemental attitudes are neglectful of parents’ emotions (for example inferring blame or diminishing their emotional reactions) and can be experienced by parents negatively.

16. Parents may have differing needs and preferences regarding their preparation for birth. Preferences regarding the length of time between notification of the death of their baby and induction of birth should be established as early as possible. Delays


between diagnosis and induction can be perceived to be meaningless or distressing. Conversely, other parents may require time to mentally prepare; the optimal duration between diagnosis and birth should consider individual preferences.

17. Parents are well informed of what to expect during the birth of a stillborn baby and have some time to process this information. Collaborative decision making with parents regarding the birth and birthing options is ideal.

18. Exclusion or disregard of partners from information provision and support may lead to them feeling ostracised and/or blamed by healthcare professionals.

19. Consideration of the environment in which birth occurs (i.e. the birth suite of the maternity ward) is important and may not be ideal to support parents during a stillbirth. The physical environment of the hospital maternity unit is rarely prepared to support parents who have lost a baby before or during birth. Having a designated private area with trained staff within the ward that is separate from newborn babies would be ideal.

20. Mothers and families can be highly distressed by the cries of babies in birthing units.

These implications for practice (21-29) are derived from findings of experiences of healthcare provision immediately post-birth. The evidence revealed that information provision and guidance to help parents decide whether or not to see their stillborn baby and to prepare themselves for the meeting if they choose to, are key factors. The evidence suggests that in the period immediately post-birth:

21. The extent to which parents may appreciate guidance may vary. Encouragement or direction to assist parents regarding how to see and hold their stillborn baby is important.

22. Parents may later regret not seeing or holding their baby after the event even though they expressed no desire to at the time.

23. Clear and descriptive information regarding what to expect in relation to the physical condition of their stillborn baby may be helpful for parents to make the best decision for them. For example; whether or not their baby will appear injured or discoloured as well as the level of development.

24. Couples may hold the same preferences around seeing and holding their child or may have differing preferences and so it is important to support both parents wishes. For example; one parent may not wish to hold the child. Ensuring both parents are provided with personalised support and information is ideal.

25. For parents that do wish to see and hold their baby, suggestions and guidance provided in a sensitive manner are important to help parents understand the options available to them. For example, parents may wish to bathe, dress and do other parenting activities with their baby. They could also bring their own clothes in for their baby to be dressed in.

26. While all parents have different preferences regarding how long they would like to spend with their stillborn baby, for many parents no length of time is ‘long enough’. Parting from their baby is likely to be distressing for many parents.


27. Collecting and storing tangible items of memorabilia such as photographs, hand and foot prints, locks of hair and other items can be helpful. It is important to inform parents of the collection of tangible items and photographs.

28. The parents and stillborn baby need to be treated with respect, especially in terms of how the baby is handled and presented to the parents. Treatment of the stillborn baby should be conducted with the same respect and care afforded to any baby.

29. Information and guidance around including other family members in seeing and holding the stillborn baby may be useful. For example; parents may wish to meet their baby with grandparents, siblings and/or other family members present if desired.

These below implications for practice (30-39) have been derived from findings of experiences of healthcare provision following the immediate experience of stillbirth. The evidence revealed that parents’ information and support needs carry on beyond the diagnosis and birth of their stillborn child. Provision of information and referrals for psychosocial support and the continuity of care especially leading up to and during a subsequent pregnancy are key factors. The evidence presented in this review, suggests that:

30. Supportive information delivered in a sensitive manner to parents regarding emotional, psychological and practical issues following stillbirth is important.

31. Parents should be offered information regarding practical issues, such as how to register the baby’s birth and how to arrange for a funeral, family issues such as how to involve and support siblings and other family members, or information regarding follow up support from psychologists, social workers or counsellors. Information and support should be given at an appropriate time.

32. It is important to provide information regarding referrals to psychologists, social workers, counsellors and other support organisations that can be taken up if and when desired. Not all parents want to receive this kind of support immediately, but should ideally be provided with written information to refer to if and when necessary. Follow-up could also occur and referral to support offered then also.

33. The impact and appropriateness of the policies and procedures in place following stillbirth should be considered carefully. Parents are often emotionally fragile and the timing of certain practical necessities, such as signing paperwork, may be distressing or too soon. For example, being confronted with the paperwork to register a stillbirth immediately post birth may be distressing and too soon for some parents.

34. Parents’ preferences should be considered around whether to go home sooner after birth or remain in the hospital.

35. Healthcare professionals engage in collaborative decision making with the parents around the most appropriate available and least distressing hospital environment for the parents to be located in. If it is their preference, parents should be moved to a different room if one is available. This will also minimise confusion that arises from encounters with staff that are not aware of, nor understand, the parent’s emotional state at that time. Care should also be taken to not amplify parents’ feelings of loneliness and isolation by moving them entirely away from familiar areas of the


hospital, for example to different wards with staff who are unfamiliar with their situation.

36. Where possible, continuity of care should be maintained and special care provided leading up to and during any subsequent pregnancy, especially around the time the stillbirth occurred when parents may be most anxious. Parents may require extra care and support provided by health professionals who are familiar with their past experience of a stillbirth.

37. Information regarding physical considerations following stillbirth, such as returning to or commencing physical activity to improve self-management of grief and lactation, is important. Ideally, information should be tailored for parents who have experienced a stillbirth, rather than providing usual postnatal information.

38. If parents choose not to take mementos with them at first, they should be asked if they would like them to be stored for them for collection at a later date.

39. The emotional and psychological impact of stillbirth can be powerful and continue for years after.

Culturally appropriate care

The following implications for practice (40-41) have been derived from findings of experiences regarding the cultural appropriateness of healthcare provision during the experience of stillbirth. The evidence revealed that culturally appropriate care may be informed by a number of considerations. Key factors included understanding that individual parents’ preferences may contravene cultural norms and must be considered also. The evidence suggests that throughout the stillbirth experience culturally appropriate care:

40. Involves an understanding that members of a particular culture may have personal preferences for care that do not necessarily adhere to traditions or customs of their culture. Some cultures have particular taboos around death, which may impact upon parents’ decisions to see or not see their stillborn baby. However, parents from a culture with taboos around seeing or talking about deceased family members, including stillborn babies, may have personal preferences that mean they desire to see and talk about their deceased baby with healthcare professionals.

41. May be inclusive of different spiritual and religious beliefs and consider helping parents to access spiritual and religious support and services within the hospital environment.


EXPERT ADVISORY GROUP

The research team assembled an expert advisory group (EAG) to provide feedback on the review and assist the development of the implications for best practice and policy to ensure that as much as possible, the information presented meets the specific needs of healthcare professionals caring for parents and families who have experienced stillbirth. The group members are:

Professor Susan Walker Obstetrician, The University of Melbourne Obstetrics and Gynaecology Royal Women's Hospital/Mercy

Ms Philippa Middleton Perinatal epidemiologist, Executive Director of ARCH (Australian Research for Health of Women and Babies), the Robinson Institute

Dr Jane Warland Midwife, Senior Lecturer, Health Sciences, School of Nursing and Midwifery, University SA

Professor Ben Mol Obstetrician, Professor of Clinical Evaluative Research in Obstetrics, Gynaecology and Reproductive Medicine in the Faculty of Medicine of the University of Amsterdam

Dr Anne Sved Williams Psychiatrist, Director, Perinatal and Infant Mental Health Services, Women’s and Children’s Network, SA and is based at Helen Mayo House. She is also a Clinical Senior Lecturer in Psychiatry, University of Adelaide

Mrs Emma Wotherspoon Public representative

Professor Alan Pearson AM RN, FRCNA, FCN, FAAG, FRCN. Director, NHMRC Centre of Research Excellence in Aboriginal Chronic Disease Knowledge Translation and Exchange (CREATE)

Mrs Glenise Coulthard Aboriginal Health Manager, Country Health SA


CONTENTS

EXECUTIVE SUMMARY ....................................................................................................................... 2

Objectives ......................................................................................................................................... 2 Questions ......................................................................................................................................... 2 Inclusion criteria ............................................................................................................................... 2 Method ............................................................................................................................................ 3 Results .............................................................................................................................................. 3

IMPLICATIONS FOR PRACTICE ............................................................................................................ 5

EXPERT ADVISORY GROUP ............................................................................................................... 10

BACKGROUND.................................................................................................................................... 1

THE IMPACT OF STILLBIRTH ON PARENTS AND FAMILIES ..................................................................................... 1 WHAT CAN HEALTH CARE PROFESSIONALS DO? INTERVENTIONS AND STRATEGIES .................................................. 2 WHAT THIS REVIEW ADDS ........................................................................................................................... 4 DEFINITIONS ......................................................................................................................................... 4

OBJECTIVE .......................................................................................................................................... 5

REVIEW QUESTIONS ........................................................................................................................... 5

METHODS .......................................................................................................................................... 6

INCLUSION CRITERIA .................................................................................................................................. 6 Types of participants ........................................................................................................................ 6 Types of interventions ...................................................................................................................... 6 Phenomenon of interest ................................................................................................................... 7 Context ............................................................................................................................................. 7 Types of outcomes ........................................................................................................................... 7 Types of studies ................................................................................................................................ 7

SEARCH STRATEGY ............................................................................................................................... 8 STUDY SELECTION ................................................................................................................................ 9 ASSESSMENT OF METHODOLOGICAL QUALITY .................................................................................................. 9 DATA EXTRACTION ................................................................................................................................... 10 DATA SYNTHESIS ..................................................................................................................................... 11

RESULTS ........................................................................................................................................... 11

DESCRIPTION OF STUDY INCLUSION ............................................................................................................. 11 ASSESSMENT OF METHODOLOGICAL QUALITY .......................................................................................... 14 CHARACTERISTICS OF INCLUDED STUDIES ......................................................................................... 16 FINDINGS FROM QUANTITATIVE DATA .............................................................................................. 31 META-SYNTHESES OF QUALITATIVE FINDINGS ............................................................................................... 31

Review question 2: What are the families’ experiences of interventions and strategies aimed at improving their psychological well-being following stillbirth?....................................................... 31 Review question 3: What is the appropriateness of interventions and strategies aimed at improving the psychological well-being of families who have experienced stillbirth? .................. 89

DISCUSSION ..................................................................................................................................... 94

IMPLICATIONS FOR FUTURE RESEARCH ......................................................................................................... 96 IMPLICATIONS FOR PRACTICE ..................................................................................................................... 98

Overall experience of stillbirth ....................................................................................................... 98 Diagnosis ........................................................................................................................................ 99 Immediately post-birth ................................................................................................................ 100


Post birth and onwards ................................................................................................................ 101 Culturally appropriate care .......................................................................................................... 102

REFERENCES ................................................................................................................................... 104

APPENDIX I: IMPLICATIONS FOR PRACTICE WITH SUPPORTING EXAMPLES ................................... 110

APPENDIX II: SEARCH STRATEGY .................................................................................................... 124

PubMed (pubmed.gov) ................................................................................................................ 124 CINAHL (via EBSCO Host) ............................................................................................................. 124 PsycINFO (Ovid SP interface) ........................................................................................................ 125 EMBASE (EMBASE.com) ............................................................................................................... 126 Grey literature search .................................................................................................................. 126

APPENDIX III: CRITICAL APPRAISAL TOOLS ..................................................................................... 129

APPENDIX IV: DATA EXTRACTION TOOLS ....................................................................................... 132

APPENDIX V: TABLE OF EXCLUDED STUDIES ................................................................................... 136

APPENDIX VI: FINDINGS AND SUPPORTING ILLUSTRATIONS .......................................................... 139

APPENDIX VII: LIST OF UNSUPPORTED FINDINGS ........................................................................... 190

TABLES

Table 1: Quality of included qualitative studies ...................................................................... 15 Table 2: Characteristics of included qualitative studies .......................................................... 17

FIGURES

Figure 1: Flow diagram of study inclusion process .................................................................. 13 Figure 2: Meta-synthesis of findings relevant to the overall experience of stillbirth ............. 33 Figure 3: Meta-synthesis of findings relevant to the period of diagnosis of the stillborn baby ................................................................................................................................................. 45 Figure 4: Meta-synthesis of findings relevant to the period of induction and birth of the stillborn baby ........................................................................................................................... 54 Figure 5: Metasynthesis of findings relevant to the period immediately post birth of the stillborn baby ........................................................................................................................... 63 Figure 6: Meta-synthesis of findings relevant to the period post birth of the stillborn baby and onwards ............................................................................................................................ 82 Figure 7: Meta-synthesis of findings relevant to the cultural appropriateness of care provided to families who have experienced stillbirth ............................................................................ 90


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BACKGROUND

The arrival of a healthy, newborn baby is often eagerly anticipated by parents and families. Sadly, for some families the loss of a baby through stillbirth can turn a joyous occasion and time for celebration into the cause of lasting and devastating psychological and emotional distress. In Australia, stillbirth is defined as the death of a baby after 20 weeks in-utero until immediately before birth (Li et al. 2011). This designation of 20 weeks is more inclusive than that of the World Health Organisation (28 weeks gestation) as well as a number of other countries that also do not recognise stillbirth until later in the gestational period. Stillbirth is a relatively common phenomenon, with one in every 135 births in Australia resulting in stillbirth (Stillbirth Foundation Australia 2013).

THE IMPACT OF STILLBIRTH ON PARENTS AND FAMILIES

Parents who experience stillbirth are at risk of suffering from a number of detrimental psychosocial effects including grief (Saflund, Sjogren & Wredling 2004), depression (Adeyemi et al. 2008), anxiety (Rådestad 2001), post-traumatic stress disorder (Kelley & Trinidad 2012) and guilt and self-blame (Corbet-Owen & Kruger 2001; McCreight 2004; Robinson 2014). While these effects may ease with time, for some parents and other family members, recovery can take many years (LaRoche 1984; Nicol et al. 1986). One recent study showed that in comparison to parents who gave birth to a healthy baby, parents who had lost their baby through perinatal loss scored significantly higher on the depression, anxiety, dissociation, sleep disturbances, somatization, interpersonal sensitivity and aggression subscales of the Trauma Symptom Checklist (Murphy, Shevlin & Elklit 2014). Stillbirth has also been identified as a potential risk factor for subsequent marital conflict and the breakdown of relationships (Badenhorst, W. et al. 2006; Cacciatore 2013).

Historically, numerous practitioners and researchers have recognised and highlighted the importance of openly acknowledging and understanding parent’s experiences of stillbirth, as well as the powerful influence that the clinical care team can have on parent’s psychological wellbeing following stillbirth (Bruce 1962; Condon 1986, 1987; Johnson 1972; Lewis 1979; Yates 1972). Despite this, the impact of stillbirth on parents and families has until recently received scant recognition - not only in the medical literature but also by health professionals and within society at large (Cacciatore, DeFrain & Jones 2008). Even immediate family members did not necessarily comprehend the impact that stillbirth had upon parents and many parents were left alone and unsupported with their loss (O'Leary & Warland 2013).

In more recent decades, greater understanding has been achieved regarding the mothers’ bond with her unborn baby (Cacciatore 2013). The death of a baby through stillbirth can have a profound impact upon mothers. Between the time that an unborn baby is diagnosed as stillborn and birth, mothers can suffer significantly (Pullen, Golden & Cacciatore 2012). Waiting for the birth may be highly distressing for mothers who have lost a baby in-utero, potentially even worse than the birth itself (Malm et al. 2011; Rådestad et al. 2013). During the birth of a stillborn baby, mothers experience a range of feelings such as shock, fear and emotional numbness (Cacciatore 2013; Trulsson & Rådestad 2004). Immediately following birth, parents have identified the health care professionals’ behaviour and handling of the


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situation as important and the emotional attitudes demonstrated by health care professionals are significant in helping bereaved parents (Saflund, Sjogren & Wredling 2004). The psychological, emotional and health needs of mothers and other family members do not cease following the immediate experience of diagnosis, birth, and the time in hospital following the birth of a stillborn baby (Kelley & Trinidad 2012). Parents return home without their expected and wished for baby and can feel isolated and abandoned by healthcare professionals (Yamazaki 2010).

Recently, growing attention has been given to the impact that stillbirth has on fathers as well as their experiences of the actions of health care professionals (Cacciatore, Erlandsson & Radestad 2013). In times of family tragedy such as stillbirth, sociocultural stereotypes often demand that men be expected to be emotionally strong in order to support the mother (McCreight 2004). This upholds a perception that fathers only have a supportive role in stillbirth and ignores the true emotional experiences of the men and the meanings that many attach to their loss. Stillbirth can be devastating for fathers, however health care professionals can tend to discount their loss and not provide the emotional support that may be available to bereaved mothers (McCreight 2004). In a qualitative study by McCreight (2004) 12 men who had experienced stillbirth were interviewed and observed during their participation in support groups in Northern Ireland over a three year period. A number of recurring themes were revealed in the analysis including self-blame; loss of identity; and the need to appear strong and hide feelings of grief and anger (McCreight 2004). These findings suggest that health care professionals need to acknowledge the male partner’s grief as being a valid response to the bereavement suffered. As yet, few studies have enquired into the impact that stillbirth has on more extended family members, such as the siblings (Avelin et al. 2011) and grandparents (O'Leary, Warland & Parker 2011; Roose & Blanford 2011) of the stillborn infant; from the few studies that currently exist, it is becoming clear that stillbirth can have a significantly detrimental effect upon grandparents and other family members.

Despite the growing recognition of the impact of stillbirth, even today, the experiences reported by parents regarding the care they have received from healthcare professionals indicates that their feelings are still often unacknowledged (Malm et al. 2011; Pullen, Golden & Cacciatore 2012; Samuelsson, Radestad & Segesten 2001; Trulsson & Rådestad 2004). The care that parents and families receive at the time of stillbirth, whether it comes in the form of some empathetic words, consideration and clarity in providing information, or a sensitive and open-minded approach to helping parents to meet and say goodbye to their dead baby can have a significant and lasting impact upon parents and families (Corbet-Owen & Kruger 2001; Downe, Schmidt & Kingdon 2013; Dyson & While 1998; Kelley & Trinidad 2012; Lee 2012; McCreight 2004; O'Neill 1998; Pullen, Golden & Cacciatore 2012; Rådestad et al. 2013; Sanchez 2001; Trulsson & Rådestad 2004; Yamazaki 2010). It is therefore critical to find effective, meaningful and appropriate means of helping parents and their families deal with such losses.

WHAT CAN HEALTH CARE PROFESSIONALS DO? INTERVENTIONS AND STRATEGIES

There are a number of interventions and strategies that can be offered to parents and families by healthcare professionals throughout the experience of stillbirth; from its diagnosis, through the experience of birth, immediately post-birth and then beyond the birth


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and potentially even some years after the initial experience. The kinds of interventions and strategies offered at the time of diagnosis for example, may be quite different to those implemented later on. Despite the relatively high prevalence of stillbirth (Say et al. 2006), uncertainty remains regarding what care and support healthcare professionals can provide after a mother and her family experience a stillbirth, both in the hospital and once the family has returned home. Historically, a common approach to providing support for parents after a stillbirth was to immediately remove the stillborn infant from the mother; many mothers were not afforded the opportunity to see and hold their baby (O'Leary & Warland 2013). Some authors argue that the now-common practice of encouraging families to form a bond with their stillborn baby, take photos and hold a funeral service may increase some parents’ - and particularly the mother’s - risk of developing post-traumatic stress disorder (Badenhorst, William & Hughes 2007; Hughes et al. 2002). For instance, one study found that some mothers expressed horror at the prospect of seeing and holding their baby (Malm et al. 2011). In such a case, health care professionals may think it unadvisable to insist that the mother hold her baby, however other studies have reported that even when mortified at the offer, with hindsight mothers appreciated that the health care professionals did insist (Kelley & Trinidad 2012).

While encouraging parents to see and hold their baby can be understood as a specific intervention or strategy to improve parents’ psychosocial wellbeing (Cacciatore 2013; Forrest, Standish & Baum 1982; Rådestad et al. 2009), support and care more generally seems to also have a significant impact upon parents’ experiences of stillbirth (Chrzan-Detkos 2010; Downe, Schmidt & Kingdon 2013). Parents need support and understanding from health care professional regarding their experience of bereavement and grief. Health care professionals can be understanding and supportive of parents and families in expressing their emotions. This highlights an important point regarding care for parents and families who have experienced stillbirth – parents may recall even small gestures and remarks by health care professionals positively or negatively (Gold, Dalton & Schwenk 2007). The actions and behaviours of healthcare professionals from the point that a baby has been diagnosed as no longer alive, during and following stillbirth have also been investigated, with one study reporting that as a result of health professionals being ill-equipped to appropriately work with families around the time of stillbirth, the best standard of care and support is rarely provided (Cacciatore & Bushfield 2007).

A recent Cochrane systematic review aimed to assess the effectiveness of support strategies for mothers, fathers and families after perinatal death, including stillbirth (Koopmans et al. 2013). The review aimed to locate randomised trials that assessed any form of support aimed at encouraging acceptance of loss, bereavement counselling, or specialised psychotherapy or counselling for mothers, fathers and families experiencing perinatal death. The review was ultimately unable to include any trials due to the large loss to follow-up reported in the located studies. The authors of this review concluded that the development of practical guidance around the support for families affected by stillbirth cannot yet be provided by an examination of experimental evidence and trials alone (Koopmans et al. 2013). Despite not including any experimental studies in a quantitative synthesis, the Cochrane review highlighted three key themes that are consistent in providing care for parents following stillbirth; respect for the individuality and diversity of grief, respect for the deceased baby and recognition of the healing power and resilience of the human spirit (Koopmans et al. 2013). Accordingly, it is important that a systematic review of the existing literature is conducted that encompasses more than randomised trials and seeks the best available evidence from other reputable quantitative study designs and qualitative research.


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WHAT THIS REVIEW ADDS

There is a pressing need for healthcare professionals to be able to offer effective care that meets all parents and families’ individual needs. It is therefore necessary to ensure that high-quality, up-to-date evidence is synthesised to inform care. As well as including some observational study designs to examine the evidence of effectiveness of psychosocial interventions and strategies delivered and suggested by health care professionals, this comprehensive systematic review includes qualitative components to establish families’ experiences of the interventions and strategies in terms of their meaningfulness and cultural appropriateness. In order to fully capture the range of experiences of the interventions and strategies that health care professionals may offer following stillbirth, this review considered studies conducted in developed countries that are applicable to inform guidance for Australian healthcare professionals who provide care to parents and families with a range of cultural backgrounds.

For the purposes of this review, the meaningfulness of an intervention or strategy can be understood as the extent to which an intervention or activity is experienced by a patient, that is related to the personal experience, opinions, values, thoughts, beliefs and interpretations of patients or clients (Pearson et al. 2005). The appropriateness of an intervention in health care can be defined as ‘issues surrounding whether the intervention fits with or is apt in a situation’ (Pearson et al. 2005). For the purposes of this review, appropriateness is understood in regard to the cultural situation or context where the parents and families of stillborn infants live. Ethnographic studies as well as qualitative descriptive studies were inspected for findings that related to the cultural appropriateness of various interventions and strategies that healthcare professionals engage in.

DEFINITIONS

Terms used to describe the death of a baby during pregnancy vary widely and commonly overlap. This has been noted in the literature and described as problematic (Murphy, Shevlin & Elklit 2014). For the purposes of this review stillbirth is defined as the death of a baby in utero at any time from 20-weeks until immediately before birth (Flenady et al. 2009; Stillbirth Foundation Australia 2013).

Other common definitions can overlap with stillbirth. For example “intrauterine death” or “intrauterine foetal death” are both terms commonly used interchangeably with stillbirth. Further definitions are described below.

Antepartum fetal death

Death of a baby before the onset of labour (Li et al. 2011). This term can encompass stillbirth when after 20 weeks or more of pregnancy, but also covers death prior to 20 weeks (Flenady et al. 2009).

Fetal death

Can encompass or be used interchangeably with ‘stillbirth’(Li et al. 2011) .

Early pregnancy loss


5

Pregnancy loss occurring before 20 completed weeks of gestation or of a fetus less than 400gm weight if gestation is unknown (Women's Hospitals Australasia 2008).

Intrapartum death

Death of the baby during labour (Li et al. 2011). If a baby is born without signs of life, but also without maceration (the skin and other changes that occur at varying lengths of time after death in the womb), there is a strong presumption that death occurred during labour. There are exceptions in both directions, which require judgement on the timing of death in relation to the presumed onset of labour (Flenady et al. 2009).

Miscarriage (see also ‘Early pregnancy loss’)

Refers to the death of a baby before 20 weeks (Women's Hospitals Australasia 2008).

Neonatal Death

Death of a live born baby within 28 days following live birth (Li et al. 2011).

Perinatal death

Can encompass stillbirth as well as neonatal death (Li et al. 2011).

Pregnancy loss or Involuntary Pregnancy Loss (IPL)

Involuntary death of a baby during pregnancy. Can also refer to miscarriage, ectopic pregnancy, fetal death and stillbirth depending upon timing (Van & Meleis 2003).

Termination of pregnancy

This is the term used to describe deliberate ending of a pregnancy with the intention that the baby will not survive (Flenady et al. 2009).

OBJECTIVE

The objective of this review was to identify effective, meaningful and/or appropriate non-pharmacological, psychosocial supportive care interventions and strategies for families to improve their psychological well-being following stillbirth.

REVIEW QUESTIONS

1. What are effective interventions and strategies for improving the psychological well-being of families who have experienced stillbirth?

2. What are families’ experiences of interventions and strategies aimed at improving their psychological well-being following stillbirth?

Specifically, this question examines the meaningfulness of interventions and strategies experienced by parents and families following stillbirth.

3. What is the appropriateness of interventions and strategies aimed at improving the psychological well-being of families who have experienced stillbirth?


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Specifically, this question examines the cultural appropriateness of interventions following stillbirth (Pearson et al. 2005)

METHODS

INCLUSION CRITERIA

Types of participants

This review considered families who have experienced stillbirth. In this review, family is defined as mothers and/or fathers and/or siblings and/or grandparents who have experienced stillbirth. Siblings are defined as the siblings of the stillborn baby. Grandparents are defined as the grandparents of the stillborn baby.

Studies that include parents or families who have experienced neonatal death, perinatal death (before or after birth), miscarriage, termination of pregnancy for non-medical reasons or pregnancy loss prior to 20 weeks were excluded. Studies that include parents or families who have experienced neonatal death, perinatal death (before or after birth), miscarriage, termination of pregnancy for non-medical reasons or pregnancy loss prior to 20 weeks as well as stillbirth were excluded if participant data relating to stillbirth could not be disaggregated from participant data relating to neonatal death or pregnancy loss prior to 20 weeks.

Types of interventions

This review considered any psychosocial strategies and/or interventions delivered by healthcare professionals aimed at improving psychological well-being. Interventions or strategies that were suggested by health professionals, though not directly delivered by them, for example attending a support group, were also included.

Psychosocial interventions have been broadly defined as interventions that focus on psychological or social factors. Psychosocial strategies and/or interventions include any approach used or recommended by healthcare professionals in order to improve psychological wellbeing.

These may include:

bereavement counselling or support;

religious and/or cultural support;

psychotherapy or mental health support during and following hospitalisation;

adjustments to the physical environment;

informational support; and

other general supportive hospital interventions aimed at supporting parents around the time of the baby’s death, including provision of photographs and other memorabilia, holding and naming the baby, offering dignified funeral arrangements and hospital follow-up visits.


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Interventions have been compared with ‘no intervention’ or ‘usual care’ or another similar type of intervention hypothesised to improve psychological well-being as defined by the particular study. Pharmacological interventions were excluded from this review.

Phenomenon of interest

The phenomenon of interest for this review was the description of the experiences and accounts of families with interventions and strategies aimed at improving their psychological well-being following stillbirth.

Reviews of experience draw together evidence of ‘meaningfulness’, which can be defined as ‘the extent to which an intervention or activity is experienced by a patient, that is related to the personal experience, opinions, values, thoughts, beliefs and interpretations of patients or clients’ (Pearson et al. 2005, p. 210). For example, parent and/or family accounts of their experiences in relation to the provision of supportive information by healthcare professionals.

As well as focussing on meaningfulness (Question 2), this review also enquired into the cultural appropriateness (Question 3) of the interventions. Appropriateness of an intervention in healthcare can be defined as issues surrounding whether ‘the intervention fits with or is apt in a situation’ (Pearson et al. 2005, p. 210). For the purposes of this review, appropriateness is understood in regard to a cultural perspective; for example, encouraging parents to hold the stillborn baby which may not be viewed as appropriate in some cultures (Hsu, Min‐Tao et al. 2004).

Context

This review aimed to be multicultural in scope and data pertaining to participants in different cultural contexts were included where deemed useful to informing guidance for Australian healthcare professionals.

Types of outcomes

The measurable outcomes of interest (Question 1) were those related to psychological well-being, these included:

Grief (normal and pathological), depression and mood, anxiety, quality of life.

Signs of social maladjustment (e.g. loneliness, isolation), family and/or relationship disruption.

These outcomes were defined by standard clinical criteria and the components of these outcomes measured by a range of psychometric assessment scales and instruments, including for example inventories of grief such as the Perinatal Grief Scale, the Anxiety Disorders Interview Schedule, the Ways of Coping questionnaire and the Impact of Event Scale, as well as questionnaires and interviews.

Types of studies

Question 1 of this review considered experimental study designs including randomised controlled trials, pseudo-randomised/quasi-experimental studies and controlled before and after studies. Observational study designs including cohort (prospective and retrospective) and case control studies were included for interventions. Cross-sectional studies, case series and individual case reports were excluded from this review.


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Question 2, which focused upon the meaningfulness of interventions, was informed using data predominantly from phenomenological studies and qualitative descriptive studies. Ethnographic studies were sought in order to answer Question 3 regarding cultural appropriateness. In the absence of sufficient phenomenological and ethnographic studies, other study designs such as grounded theory, action research, feminist research as well as qualitative studies with no specified methodology were considered. Qualitative studies that used content analyses based upon frequency of responses rather than upon the theme or meaning, for example cross-sectional survey data from open-ended response questions, was excluded due to the risk of these studies losing important data relating to participants’ experiences.

SEARCH STRATEGY

The search for studies for this review was conducted in February 2014. It aimed to locate both published and unpublished literature written in the English language. A three step search strategy was employed. An initial limited search of MEDLINE and CINAHL was undertaken. This involved analysing the text words in the title and abstract of relevant articles and the index terms used to describe their content. A second search using all the identified keywords and index terms was tailored and applied across six electronic databases: PubMed (pubmed.gov); CINAHL (via EBSCO Host); EMBASE (EMBASE.com); PsycINFO (Ovid SP interface); ClinicalTrials.gov (US National Library of Medicine); all registers within the metaRegister of Controlled Trials (mRCT) (www.controlled-trials.com/mrct/). The complete set of search strategies is presented in Appendix II. The search was not restricted by publication date. The third search involved manually screening the reference lists of included studies to identify any additional studies relevant to this review.

The search for unpublished studies included a search of electronic sources relevant to stillbirth:

Stillbirth and Neonatal Death Charity (SANDS) www.uk-sands.org

International Stillbirth Alliance (ISA) www.stillbirthalliance.org

Perinatal Society of Australia and New Zealand (PSANZ) www.psanz.com.au

Australian and New Zealand Stillbirth Alliance (ANZSA) www.stillbirthalliance.org.au

SIDS and Kids www.sidsandkids.org

Stillbirth and Neonatal Death Support Group www.sands.org.au

Pregnancy Loss and Infant Death Alliance www.plida.org

Australian Centre for Grief and Bereavement www.grief.org.au

Pregnancy Loss Australia www.teddyloveclub.org.au

Antenatal Results and Choices www.arc-uk.org

A Heartbreaking Choice www.aheartbreakingchoice.com

SAFDA (Support After Fetal Diagnosis of Abnormality)

http://www.controlled-trials.com/mrct/

http://www.uk-sands.org/

http://www.stillbirthalliance.org/

http://www.psanz.com.au/

http://www.stillbirthalliance.org.au/

http://www.sidsandkids.org/

http://www.sands.org.au/

http://www.plida.org/

http://www.grief.org.au/

http://www.teddyloveclub.org.au/

http://www.arc-uk.org/

http://www.aheartbreakingchoice.com/


9

STUDY SELECTION

The citations returned from search of databases and grey literature were exported into

bibliographic citation software (EndNote X6®; Thomas Reuters, Carlsbad, CA, USA) to

facilitate scanning of titles and abstracts for assessment of eligibility against the a priori review inclusion criteria. Screening of titles and abstracts occurred in two phases. First, five members of the review team (MP, DR, KL, EA and ZJ) each scanned 20% of the retrieved citations; all potentially relevant citations were then independently assessed by one reviewer (MP) for consistency. Papers retrieved in full text were initially assessed against the review eligibility criteria for inclusion by one reviewer (MP). When doubt arose regarding eligibility, study inclusion was ultimately determined by discussion with the review team.

Qualitative studies with non-disaggregated populations were excluded unless authors of qualitative papers had themselves clearly reported upon disaggregated populations (i.e. parents or family members of stillborn infants analysed separately from parents who had experiences miscarriage or perinatal death) for their analysis. It was deemed unfeasible for the reviewers to disaggregate the population of interest where analysis and results based on mixed populations were presented. The reason for this was that if the authors had reported particular findings and conclusions based upon mixed populations and not the sub-population of parents and families who had experienced stillbirth separately, the reviewers would be unable to establish that the findings were not extensively based upon participants who did not fit the inclusion criteria for this review. Furthermore, it was also deemed unfeasible for the authors of qualitative studies to disaggregate mixed populations in retrospect as this would entail an entirely new analysis. Qualitative studies were also excluded where there was an apparent mismatch between the stated methodology (for example phenomenology) and the method of data collection and analysis (for example survey response analysis).

ASSESSMENT OF METHODOLOGICAL QUALITY

Papers selected for inclusion following review of full text were assessed for methodological quality using the appropriate (based on study design/type of study) standardised critical appraisal instruments from the Joanna Briggs Institute System for the Unified Management, Assessment and Review of Information (JBI SUMARI; http://joannabriggs.org/sumari.html); JBI Qualitative Assessment and Review Instrument (JBI QARI) for qualitative studies; JBI Meta-Analysis of Statistics Assessment and Review Instrument (JBI MASTARI) for quantitative studies); see Appendix III. For each selected paper, two reviewers from the review team independently appraised the relevant study with the appropriate tool. Any disagreements were resolved by discussion between the two reviewers and if necessary discussed with a third reviewer.

Studies selected for inclusion that used a mixed methodology, including methods to collect and record findings that were both quantitative and qualitative in nature, were appraised according to which methods were used to produce the findings relevant to the review questions. For example, in most cases, evidence pertaining to the meaningfulness of an intervention or strategy was derived from a qualitative component via interviewing participants who had received a particular intervention or strategy following stillbirth; as a result these papers were appraised using the JBI QARI appraisal instrument (see Appendix III). To clarify details of studies that appeared inadequately reported, or that hindered

http://joannabriggs.org/sumari.html


10

assessment of methodological quality, corresponding authors of studies were contacted to provide further details.

DATA EXTRACTION

Data extracted from primary studies included in the review used the standardised data extraction tools within JBI SUMARI review software suite (The Joanna Briggs Institute; http://joannabriggs.org/sumari.html; JBI MASTARI for quantitative studies; JBI QARI for qualitative studies; see Appendix IV).

The data extracted included specific details about the interventions and strategies, populations, study methods and outcomes of significance to the review question and specific objectives. The descriptive data of interest that was extracted included:

methodology;

study methods;

country in which the study was conducted;

recruitment method (e.g. convenience sampling ) and setting (e.g. support group);

participants (number, demographics relating to gestational age of stillborn infant, time since stillbirth, age group, sex);

phenomena of interest (where applicable);

intervention (from quantitative studies) including focus, type, year, duration, intensity, delivery and format, description of implementation; and

authors’ conclusions.

For quantitative studies, attempts were not made to request disaggregated outcome data from authors who had published their research prior to 2004. Included qualitative papers were read and re-read multiple times closely before findings were extracted. Where possible, findings from qualitative studies were extracted verbatim as themes identified by the authors of each study. The presentation of themes varied, often appearing as headings and subheadings in the text or sometimes presented in tables with corresponding textual explanation in the main body of the paper. These findings were extracted with one or more illustrations from the text to support the finding.

Each finding was assigned a level of credibility according to the QARI analytical module (The Joanna Briggs Institute; http://joannabriggs.org/sumari.html). These levels are:

Unequivocal (U) – relates to evidence beyond reasonable doubt, which may include findings that are matter of fact, directly reported/observed and not open to challenge.

Credible (C) – those that are, albeit interpretations, plausible in light of data and theoretical framework. They can be logically inferred from the data. Because the findings are interpretive they can be challenged.

Unsupported (US) – where findings are not supported by the data presented.




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DATA SYNTHESIS

Review Question 1

The synthesis of data from quantitative studies was to be performed in accordance with the JBI methodology and as detailed in an a priori protocol. However, the inclusion of a single quantitative study precluded any data synthesis.

Review Question 2 and 3

Qualitative research findings were, where possible, pooled separately for Questions 2 and 3 using JBI-QARI (The Joanna Briggs Institute; http://joannabriggs.org/sumari.html). This involved the discrete aggregation or synthesis of findings relating to ‘meaningfulness’ and ‘cultural appropriateness’ to generate a set of statements that represent that aggregation. Where findings were relevant to both questions, they were included in the data synthesis for each question.

Specifically, synthesis involved the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorising these findings on the basis of similarity in meaning. These categories were then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice (Pearson et al. 2005). In an effort to provide pragmatic guidance around provision of care for families that have experienced stillbirth, the synthesis was conducted in line with advice provided by the EAG. The EAG emphasised the importance of the time elapsed since the stillbirth on subsequent psychological status, the experiences of family members and the distinct phases of the stillbirth experience whilst interacting with health care professionals in the health care setting. As such, the extracted findings from the included qualitative studies have been presented in syntheses relevant to participants’ experiences of the phenomenon of interest at different periods in the overall sequence of their experience of stillbirth. These were at the time of diagnosis, birth, immediately after the event, and anywhere in the weeks, months and years that followed. An initial, separate synthesis of findings not specifically related to any one point in the overall sequence of events has also been provided. This represents a deviation from the original protocol that a priori stipulated syntheses based on the varying interventions that would potentially be identified. This approach also acknowledges that there are potentially significant differences between interventions during different periods of time. For example, the provision of information by healthcare professionals at the time of diagnosis is likely to be very different from the provision of information by healthcare professionals weeks later.

RESULTS

DESCRIPTION OF STUDY INCLUSION

Figure 1 outlines the results of the database search and the various stages of the study selection and inclusion process. The electronic search for published literature across all included databases yielded a total of 10,176 records. The search for grey literature across



12

various stillbirth and perinatal organisations yielded one additional study (Redshaw, Rowe & Henderson 2014). A total of 1,831 duplicate records were identified and removed from further analysis. Titles and abstracts of the remaining 8346 unique citations were screened for eligibility. Following this, 342 studies were identified for retrieval of full text; of these, two studies could not be retrieved (Fenstermacher 2011; Griffin 2012); see Appendix V.

A further 310 studies were found to be ineligible for inclusion upon assessment of full text. The majority of these studies were excluded because they were not classified as primary studies or original research (N = 173). A large number of studies (N = 62) utilised methodology that was incongruent with the study designs required to address the objectives of the review. A total of 25 studies did not examine a relevant phenomenon of interest and in 35 studies, the stillbirth population data could not be feasibly disaggregated from data pertaining to populations excluded for inclusion in this review (miscarriage, perinatal death etc.).

A total of six quantitative studies (6/30) and 24 qualitative studies (24/30) met the review’s inclusion and were critically appraised. Of the six quantitative studies that met the inclusion criteria for Question 1, three were randomised controlled studies and three were cohort studies. Following critical appraisal, one quantitative study was included to address Question 1, and 22 qualitative studies were included to address Questions 2 and 3 of the review. Appendix V presents studies excluded following assessment of methodological quality including reasons for exclusion.


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FIGURE 1: FLOW DIAGRAM OF STUDY INCLUSION PROCESS

Additional records identified through grey literature

(n = 1)

Records identified through database searching

(n = 10,176)

Duplicate records removed

(n = 1,831)

Title and abstract screen

(n = 8,346)

Full-text articles assessed for eligibility

(n = 340)

Full-text articles excluded, with reasons: (n = 310)

- Not primary study n = 173 - Incorrect methodology n = 62 - Incorrect population n = 14 - Incorrect phenomena of

interest n = 25 - Unfeasible to disaggregate n =

35 - Erratum n = 1

Records that did not meet the inclusion criteria

(n = 8,004)

Studies assessed for methodological quality

(n = 30)

Studies excluded after quality appraisal

(n = 7)

Studies included in quantitative summary

(n = 1)

Studies included in the review

(n = 23)

Studies included in qualitative synthesis

(n = 22)

Records that could not be retrieved

(n = 2)


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ASSESSMENT OF METHODOLOGICAL QUALITY

Review Question 1

One randomised controlled trial conducted in Germany met the inclusion criteria and was deemed to be of sufficient methodological quality to address Question 1 of the review (Kersting et al. 2011). The study utilised a true method of randomisation (block randomisation) to assign participants to either the intervention or control condition. The intervention and control group participants were comparable at study entry; however it was unclear whether allocation concealment occurred introducing the risk of selection bias. As in most psychotherapeutic intervention studies, the blinding of subjects to each study arm was not possible. Although there was a relatively high loss to follow-up (almost 25%), the reasons for study dropout were reported and an intent-to-treat (ITT) analysis was conducted to allow for consideration of the impact of attrition on the therapy’s reported benefit for participants. It was unclear whether those assessing outcomes were blind to treatment allocation meaning detection bias may have been introduced, however outcomes were assessed in both comparison groups in the same way using validated, reliable tools.

Review Questions 2 and 3

Twenty two studies were deemed of sufficient methodological quality and proceeded to have findings extracted for inclusion in subsequent syntheses presented in this review. The results of the appraisal are summarised in Table 1.

Overall, only 50% of the included studies adequately addressed the first criterion regarding congruity between the stated philosophical perspective and methodology and this item was therefore rated as unclear in these studies. The studies that did not meet this criterion (Table 1) did not report a specific philosophical perspective or specific qualitative methodology such as ‘phenomenology’ or ‘grounded theory’. This may potentially indicate a lack of rigour in terms of the use of qualitative methodology and methods. Most studies were rated highly for Q2-5 as authors tended to provide adequate information regarding congruity between their stated methodological approach and the research objectives, data collection methods and analysis and interpretation of results.

Most studies (almost 60%) did not include statements of the researchers’ cultural identity or personal values (Table 1; question 6). Only just over 30% of studies adequately addressed the authors’ influence on the research and vice-versa (Table 1; question 7). The low proportion of included studies that fulfilled these quality criteria increases the risk that for many of the studies that inform this review, the risk that the original researchers were influenced by the research process and vice-versa could be greater, allowing for potential personal biases or sentiments to influence the findings reported by these authors. There appeared to be adequate representation of participants’ voices in just under 78% of the included studies. This indicates that the majority of studies provided sufficient number and depth of illustrations in their data to depict the basis of their findings and conclusions. Two studies that were critically appraised were not deemed suitable for inclusion due to methodological and reporting inadequacy (Cacciatore, Erlandsson and Rådestad, 2013; Lockwood and Lewis, 1980); see Appendix V.


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TABLE 1: QUALITY OF INCLUDED QUALITATIVE STUDIES

Qu

est

ion

1

Qu

est

ion

2

Qu

est

ion

3

Qu

est

ion

4

Qu

est

ion

5

Qu

est

ion

6

Qu

est

ion

7

Qu

est

ion

8

Qu

est

ion

9

Qu

est

ion

10

Avelin et al. (2011) U Y Y Y Y N N Y Y Y

Bonnette and Broom (2012) Y Y Y Y Y N Y Y Y Y

Corbet-Owen and Kruger (2001) Y Y Y Y Y Y N Y U Y

Downe, Schmidt and Kingdon (2013)

Y Y Y Y Y Y Y Y Y Y

Dyson and While (1998) Y Y Y Y Y Y N Y Y Y

Hsu, M. T. et al. (2004) Y Y Y Y Y N N U Y Y

Hsu, Tseng and Kuo (2002) Y Y Y Y Y N Y U Y Y

Huberty et al. (2014) U Y Y Y Y N N U Y Y

Kelley and Trinidad (2012) U Y Y Y Y N N Y Y Y

Lee (2012) U Y Y Y Y N N Y U Y

Malm et al. (2011) U Y Y Y Y Y Y Y Y Y

O'Neill (1998) U U U U U Y Y Y N/A Y

Pullen, Golden and Cacciatore (2012)

Y Y Y Y Y Y U U U Y

Rådestad et al. (2013) U Y Y Y Y N N Y Y Y

Saflund, Sjogren and Wredling (2004)

U Y Y Y Y N U Y Y Y

Samuelsson, Radestad and Segesten (2001)

Y Y Y Y Y N N Y Y Y

Sanchez (2001) U Y Y N Y Y N N Y U

Sun, Rei and Sheu (2013) Y Y Y Y Y U U Y Y Y

Trulsson and Rådestad (2004) U Y Y Y Y Y Y Y Y Y

Weaver-Hightower (2012) Y Y Y Y Y Y Y Y N/A Y

Worth (1997) U Y Y Y Y N N Y Y Y

Yamazaki (2010) Y Y Y Y Y U N Y Y Y

% 50 95 95 91 95 41 32 77 85 95

Percentages indicate proportion of questions answered Yes (Y). See Appendix III for appraisal questions. Y = Yes; N = No; U = Unclear; N/A = Not applicable


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CHARACTERISTICS OF INCLUDED STUDIES

Review Question 1

One randomised controlled trial conducted in Germany was relevant to address Question 1 of the review (Kersting et al. 2011). This study included 78 women who had lost a baby through miscarriage, termination of pregnancy due to fetal anomaly, or stillbirth. This study examined the efficacy of internet-based cognitive behavioural therapy compared to a wait-list control on outcomes of post-traumatic stress, grief and psychopathology in a sample of mothers who had experienced pregnancy loss.

Review Questions 2 and 3

A total of 22 studies were included to address Questions 2 and 3 (Table 2). Studies included in the qualitative component of this systematic review were conducted in Australia (3) (Bonnette & Broom 2012; Lee 2012; O'Neill 1998), the United States (5) (Huberty et al. 2014; Kelley & Trinidad 2012; Pullen, Golden & Cacciatore 2012; Sanchez 2001; Weaver-Hightower 2012), Sweden (5) (Avelin et al. 2011; Malm et al. 2011; Rådestad et al. 2013; Saflund, Sjogren & Wredling 2004; Samuelsson, Radestad & Segesten 2001), Canada (1) (Worth 1997), Taiwan (3)(Hsu, M. T. et al. 2004; Hsu, Tseng & Kuo 2002; Sun, Rei & Sheu 2013), United Kingdom (2) (Downe, Schmidt & Kingdon 2013; Dyson & While 1998), South Africa (1) (Corbet-Owen & Kruger 2001), Japan (1) (Yamazaki 2010), Norway (1) (Trulsson & Rådestad 2004).

The majority of studies included mothers aged between 18 years to 41; one study included mothers up to the age of 62 (Corbet-Owen & Kruger 2001). Some studies included both fathers and mothers as a couple (Avelin et al. 2011; Downe, Schmidt & Kingdon 2013; Kelley & Trinidad 2012; Pullen, Golden & Cacciatore 2012; Saflund, Sjogren & Wredling 2004; Sun, Rei & Sheu 2013) and a small number of studies involved fathers (aged between 28 and 54) only (Bonnette & Broom 2012; O'Neill 1998; Samuelsson, Radestad & Segesten 2001; Weaver-Hightower 2012; Worth 1997). The time since stillbirth reported in the included studies most commonly ranged from two months up to six years and up to 22 years after stillbirth in one study (Corbet-Owen & Kruger 2001). Participants of the studies were most commonly recruited purposively through hospitals, health clinics, stillbirth and perinatal death foundations and organisations, self-help/ support groups and by word of mouth.

Methodologies implemented by authors spanned phenomenology, ethnography, auto-ethnography, grounded theory and unspecified qualitative methodological approaches. Face to face semi-structured and in-depth interview methods were the most frequently used approach to data collection with interview times ranging from 25 minutes up to 2 hours and 45 minutes. Survey methods, auto-ethnographic self-reflection, semi-structured focus group and telephone interviews were also used by researchers. Analysis of the collected data was most commonly thematic, with exploratory/inductive content analysis and discourse analysis also utilised by some researchers. A summary of the characteristics of the studies included in the review is presented in Table 2.


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TABLE 2: CHARACTERISTICS OF INCLUDED QUALITATIVE STUDIES

Avelin, P., Erlandsson, K., Hildingsson, I. & Rådestad, I. 2011. Swedish parents' experiences of parenthood and the need for support to siblings when a baby is stillborn. Birth (Berkeley, Calif).38(2):150-8.

Methodology Qualitative content analysis (thematic analysis)

Methods Focus groups (90-120 minutes)

Participants Twenty five parents representing 22 families; 20 mothers and five fathers (ages not specified), who had experienced stillbirth between 1-22 years earlier (average 6 years).

Country Sweden

Recruitment method and setting

Via the Swedish National Infant Foundation Internet website.

Phenomena of interest Parenthood and the needs of siblings after stillbirth from the parents’ perspective.

Authors’ conclusions The siblings’ (39 siblings aged 1.5-19 years at the time of the stillbirth) situation is characterised by having a parent who tries to maintain a balance between grief and everyday life. Parents are present and engaged in joint activities around the stillbirth together with the siblings of the stillborn baby. Although parents are aware of the sibling’s situation, they feel that they are left somewhat alone in their parenthood after stillbirth and therefore need support and guidance from others.

Bonnette, S., and Broom, A. 2012. On grief, fathering and the male role in men's accounts of stillbirth. Journal of Sociology. 48(3):248-65.

Methodology Interpretive/exploratory qualitative (otherwise unspecified)

Methods Interviews (45 minutes to 2.5 hours)

Participants Twelve men (age range 28 to 54) who had experienced a stillbirth (time since loss unspecified).

Country Australia (Regional NSW city)

Recruitment method Snowball sampling and purposive sampling using posters placed on community noticeboards and in libraries, community


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and setting centres, pharmacies and shops.

Phenomena of interest How men engaged with their unborn and stillborn child as fathers and the perceived legitimacy of male grief.

Authors’ conclusions There are complex ways in which these men identify as fathers to their unborn and stillborn child; how they develop dynamic and ongoing relationships with their child post-stillbirth; and the problematic of expressing grief in the context of ‘the male role’. Cultural constructions of the ‘male role’ are both manifest and contested in the context of stillbirth. Fathering and grief are situated within a highly gendered and relational dynamic.

Corbet-Owen, C. and Kruger L.M. 2001. The health system and emotional care: Validating the many meanings of spontaneous pregnancy loss. Families, Systems, & Health. 19(4):411-27.

Methodology Constructionist grounded theory

Methods Interviews (open-ended, face-to-face)

Participants Eight women in total (age range 32 to 62 years; age at time of loss 18-30 years). Four women experienced multiple losses, with at least one occurring after 20 weeks. Two participants experienced single losses at 12 and five weeks; data pertaining to these participants was excluded were possible. Both white and “coloured” participants speaking English and Afrikaans.

Country Western Cape, South Africa.


Purposive sampling to represent a range of socioeconomic backgrounds. Participants were referred by health care professionals and contacted the researcher after hearing about they study by word of mouth.

Phenomena of interest To understand mothers’ experiences and needs following pregnancy loss and how the medical system can best support them.

Authors’ conclusions The meaning of the pregnancy not only determined the meaning of the pregnancy loss, but also impacted on the participants’ emotional needs at the time of loss. The short-term needs of mothers were always the same; to have their unique experiences listened to. However their longer-term needs were more diverse and complex.

Downe, S., Schmidt, E., Kingdon, C. Heazell, A.E.P. 2013. Erratum: Bereaved parents' experience of stillbirth in UK hospitals: A qualitative interview study BMJ Open. 3(9)

Methodology Grounded theory (constant comparative analysis)


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Methods Interviews (face-to-face and telephone)

Participants Twenty five participants from 22 families. Nineteen participants were mothers interviewed individually, with three mother and father couples interviewed together. The mothers’ age at stillbirth ranged from 18-44 years, and gestation at time of stillbirth was 24-27 weeks (2 participants) and 32-42 weeks (20 participants).

Country United Kingdom


Participants had previously completed a web-based questionnaire via the Stillbirth and Neonatal Death Society (SANDS) website and were purposively sampled based upon maximum variation sampling and data saturation.

Phenomena of interest To obtain the views of bereaved parents about their interactions with healthcare staff when their baby died just before or during labour.

Authors’ conclusions Positive memories and outcomes following stillbirth depend as much on genuinely caring staff attitudes and behaviours as on high-quality clinical procedures. All staff who encounter parents in this situation need to see each meeting as their one chance to get it right.

Dyson, L. & While, A. 2008. Research study. The 'long shadow' of perinatal bereavement. British Journal of Community Nursing. 3(9):432-9.

Methodology Phenomenology

Methods Interviews (no further detail provided)

Participants Eight mothers (age range 18-39 years) of stillborn infants (gestation time 24-40 weeks) six weeks to 14 years after stillbirth. Mothers were married or single, had no, 1 or 2 live children, and had experienced between 1 and 5 stillbirths. Six participants were British, one was British/African and one was American.

Country United Kingdom


Not stated.

Phenomena of interest How mothers experienced and felt about stillbirth.

Authors’ conclusions Women may experience periods of grief or loss throughout their lives especially during times of crisis and/or stress and


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therefore these women may again be in need for support from healthcare professionals who come into contact with them at times of crisis not related to perinatal loss.

Hsu, M.T., Tseng, Y.F., Banks, J.M. & Kuo, L.L. 2004. Interpretations of stillbirth. Journal of advanced nursing. 47(4):408-16.

Methodology Ethnography

Methods Interviews (average duration 2 hours 45 minutes) over a 2.5 year period

Participants Twenty mothers aged 22 to 40 years old of stillborn infants (gestational age 20 weeks or more). The time since the experience was within one year.

Country Taiwan


Purposive sample within one year following stillbirth from one medical centre.

Phenomena of interest The aim of the study was to explore the interpretations that Taiwanese mothers commonly attribute to stillbirth.

Authors’ conclusions Culturally bound taboos against talking about death, participating in death-related events and expressing grief in public affect the adaptation and grieving processes of Taiwanese mothers who have experienced stillbirth. Nurses should, therefore, make an effort to listen to the perspectives of such patients in order to assist them with coming to terms with their loss. As part of their training, nurses require information on cultural beliefs so that they can provide appropriate care to grieving mothers.

Hsu, M.T., Tseng, Y.F. &, Kuo, L.L. 2002. Transforming loss: Taiwanese women's adaptation to stillbirth. Journal of advanced nursing. 40(4):387-95.

Methodology Ethnography

Methods Interviews (average duration 2 hours 45 minutes) over a 2.5 year period

Participants Twenty mothers aged 22 to 40 years old of stillborn infants (gestational age 20 weeks or more). The time since the experience was within one year.

Country Taiwan

Recruitment method Purposive sample within one year following stillbirth from one medical centre.


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and setting

Phenomena of interest To explore the experiences of Taiwanese mothers of stillborn babies, their coping strategies, and the ways in which their subsequent human interactions are shaped by Taiwanese culture.

Authors’ conclusions Taiwanese mothers of stillborn babies must move through a process of transformation that includes engagement with cultural expectations for women. Grief over the loss of a stillborn child is not only a health issue, but also an issue of sociocultural adaptation.

Huberty, J.L., Coleman, J., Rolfsmeyer, K. & Wu, S. 2014. A qualitative study exploring women's beliefs about physical activity after stillbirth. BMC pregnancy and childbirth. 14(1):26.

Methodology Qualitative exploratory

Methods Semi-structured interviews (face-to-face or telephone (duration 30—45 minutes)

Participants 24 mothers (M age 33±3.68 years) of stillborn infants (gestation age 20 weeks or greater). Time since stillbirth = 6.33 ± 3.06 months).

Country United States of America

Recruitment methods and setting

Participants purposively recruited nationally via due to participation in a prior survey as well as from advertisements in clinics and research and education foundations as well as using online social networks and word of mouth.

Phenomena of interest Women’s beliefs about physical activity following a stillbirth.

Authors’ conclusions Women who have experienced stillbirth have unique beliefs about physical activity related to their experience with stillbirth. Findings from this study may help to improve the health and quality of life for women who have experienced stillbirth by utilising physical activity as a strategy for improving depressive symptoms associated with experiencing a stillbirth.

Kelley, M.C. & Trinidad, S.B. 2012. Silent loss and the clinical encounter: Parents' and physicians' experiences of stillbirth-a qualitative analysis. BMC pregnancy and childbirth. 12:137.

Methodology Qualitative discourse analysis (further details unspecified)


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Methods Secondary qualitative iterative discourse analysis of data transcripts from three previous semi-structured focus groups with mothers and fathers. Two of the three focus groups consisted of mothers only.

Participants Eighteen mothers of stillborn infants. Three mothers were also health professionals and two mothers participated together with the father (two fathers). Participants have been disaggregated from the overall population which included health professionals. No further details regarding provided.



Parent participants were identified and recruited through parent hospital guild groups and then by snowball recruitment through friends of guild members. The primary study was a quality improvement/needs assessment project.

Phenomena of interest Parents’ and physicians’ experiences and beliefs surrounding stillbirth during the clinical encounter.

Authors’ conclusions Hospitals need to examine the physical environment for deliveries and, wherever possible, offer designated private areas with staff trained in stillbirth care. Training programs in obstetrics need to better address the bereavement needs of parents following a stillbirth, and research is needed to evaluate effective bereavement interventions, accounting for cultural variation. Critical improvements are also needed for mental health support beyond hospitalization. Finally, medical professionals and parents can play an important role in reversing the stigma that surrounds stillbirth.

Lee, C. 2012. 'She was a person, she was here': The experience of late pregnancy loss in Australia. Journal of Reproductive and Infant Psychology. 30(1):62-76.

Methodology Qualitative descriptive research (further details unspecified)

Methods Thematic analysis of results of a qualitative web-based survey containing open-ended questions embedded in a larger survey.

Participants Fourteen mothers (ages from 23 to 39, median age = 29) of stillborn infants (nine women experienced the loss between 20 and 24 weeks’ gestation, two at 25 weeks, one at 36 weeks, and one at 37 weeks (one unknown). Time since stillbirth: three-four months.

Country Australia (Queensland)

Recruitment method Purposive sampling of respondents to the 2010 Having A Baby in Queensland survey which used birth notifications to


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and setting identify every woman who gave birth in Queensland between February and May 2010. Participants were identified by matching birth and death notifications.

Phenomena of interest To describe Australian women’s experience of late pregnancy loss, with a particular emphasis on their experiences with the health care system.

Authors’ conclusions Most women interpreted the experience as the birth and death of a baby, and as a major family tragedy, while at least some health care professionals appeared to view it primarily as a medical problem. This mismatch in perceptions appeared on occasions to exacerbate levels of distress and to result in care that was focused on medical rather than personal concerns.

Malm, M.C., Rådestad, I., Erlandsson, K. & Lindgren, H. 2011. Waiting in no-man's-land - mothers' experiences before the induction of labour after their baby has died in utero. Sexual & reproductive healthcare: official journal of the Swedish Association of Midwives. 2(2):51-5.

Methodology Qualitative inductive content analysis (further details unspecified)

Methods In-depth, qualitative interviews lasting from 50 mins to 2.5 hours including two open-ended questions.

Participants Twenty six mothers (ages 20 to 41) of stillborn infants (gestational age 30-42 weeks) one to 80 months after stillbirth.

Country Sweden


Via the Swedish National Infant Foundation Internet website.

Phenomena of interest To investigate the mothers’ experiences of the time from the diagnosis of the death of their unborn baby until induction of labour.

Authors’ conclusions The mother’s experiences during the time after the information of their baby’s death in utero until the induction of labour can be understood as a sense of being in no-man’s-land, waiting without knowing for what or for how long.

O'Neill, B. A. 1998. father's grief: dealing with stillbirth. Nursing forum. 33(4):33-7.

Methodology Personal retrospective account (further details unspecified)

Methods Retrospective account and analysis of personal experience in the style of an auto ethnography


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Participants One father of a stillborn infant of 7 months gestational age.

Country Australia


N/A

Phenomena of interest Retrospective account of hospital and post-hospital experiences.

Authors’ conclusions In the end each person’s experience of stillbirth is unique. There is no right or wrong way to grieve and each person defines it uniquely. My own experiences have shown me that it is important for the father to be strong and to take responsibility for what needs to be done, yet acknowledge his grief.

Pullen, S., Golden, M.A. & Cacciatore, J. 2012. "I'll never forget those cold words as long as I live": parent perceptions of death notification for stillbirth. Journal of social work in end-of-life & palliative care. 8(4):339-55.

Methodology Grounded theory

Methods Retrospective constant comparison analysis of data from a web-based survey that included open-ended and closed-ended qualitative items.

Participants Ninety mothers and fathers of stillborn infants who ‘strongly agreed’ or ‘strongly disagreed’ that the way news about the death of their infant was delivered negatively impacted their grieving process. This population was isolated from an overall population of 624 mothers (n = 599/97.4%) and fathers (n = 25/2.6%) of stillborn infants with a gestational age of 20 weeks of longer.

Country United State of America


Respondents to a web-based survey that was part of a larger project regarding communication in the context of stillbirth. Participants were recruited and contacted through participation and membership in organizations that offer services to bereaved parents of perinatal loss. All surveys of participants who had experienced stillbirth wherein respondents strongly agreed that they recalled the exact words a health care provider used to deliver death notifications were selected. These data were then sorted on the basis of either strong agreement or strong disagreement with the survey item, “The way I found out about the diagnosis negatively impacted my grieving process.” Participants must have also responded to an open ended item regarding how the health care professional said and or did when they delivered the news of the


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diagnosis.

Phenomena of interest Stillbirth notification messages recalled by parents who strongly agreed and strongly disagreed that the way news about the death of their infant was delivered negatively impacted their grieving process.

Authors’ conclusions Ultimately, the onus of the responsibility to do no harm falls upon the health care professionals. There may be nothing that can ameliorate a parent’s natural grieving process, but health care professionals can mitigate psychological damage and avoid further exacerbating the trauma.

Rådestad, I., Malm, M.C., Lindgren, H., Pettersson, K. & Larsson, L.L. 2013. Being alone in silence - Mothers' experiences upon confirmation of their baby's death in utero. Midwifery.

Methodology Exploratory, inductive qualitative content analysis (further details unspecified)

Methods In-depth interviews (55-90 minutes) to collect participant narratives.

Participants 26 mothers of stillborn infants (gestation age 28+ weeks) one to six years after stillbirth for 18 mothers and less than one year for eight mothers.

Country Sweden


Self-recruited using information and an enquiry about participation through the Swedish National Infant Foundation website.

Phenomena of interest Mothers' experiences of the confirmation of ultrasound examination results and how they were told that their baby had died in-utero.

Authors’ conclusions Mothers emphasised an awareness of silence and feelings of being completely alone while being told of the baby's death. The prevalence of silence during an ultrasound examination may in certain cases cause further psychological trauma for the mother of a stillborn baby.

Säflund, K., Sjögren, B. & Wredling, R. 2004. The role of caregivers after a stillbirth: views and experiences of parents. Birth (Berkeley, Calif). 31(2):132-7.

Methodology Qualitative content analysis (further details unspecified)


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Methods Interviews conducted in 1992. Participants were interviewed either once or twice; the first semi-structured interview lasted approximately 90 mins. The second interview aimed to focus on questions not fully addressed at the first interview; duration was not reported.

Participants Fifty seven mothers (aged 22-42) and 40 fathers (ages not reported) of stillborn infants (gestation time greater than 28 weeks) four to six years after stillbirth. Twenty four couples and seven mothers (total of 31 stillbirth experiences) were interviewed at the first meeting. Sixteen of these couples and 10 mothers participated in the second interview (26 stillbirth experiences). Two participants were single mothers whose partners did not participate.

Country Sweden


Convenience sample of parents from two regional hospitals, Karolinska Hospital and Danderyds Hospital in Stockholm.

Phenomena of interest Caregivers’ support as revealed by the parents’ experiences.

Authors’ conclusions Hospitals are under an obligation to organise the care and make it possible for parents to see the same caregivers again, and to offer extra ultrasound investigations and check-ups without unnecessary bureaucracy. The health care professional caregivers’ behaviour and handling of the stillbirth is important and the qualities identified by the study findings should be implemented in clinical care, and could facilitate active guidance and counselling for bereaved parents who have experienced a stillbirth.

Samuelsson, M., Rådestad, I. & Segesten, K. 2001. A waste of life: fathers' experience of losing a child before birth. Birth (Berkeley, Calif).28(2):124-30.


Methods Face to face interviews (25 minutes to 2 hours) with questions (details not provided)

Participants Eleven fathers aged between 31 and 46 of stillborn infants (gestation time 32-42 weeks) five to 27 months after stillbirth.

Country Sweden

Recruitment setting Purposive sample of fathers of stillborn infants

Phenomena of interest To describe how fathers experienced losing a child as a result of stillbirth.


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Authors’ conclusions The fathers’ general trust in life and the natural order was suddenly and unexpectedly severely tested by the death of their child, which they perceived as a terrible waste of life. They sought understanding as grieving men and fathers from both the hospital personnel and their partners, as well as from relatives. Being able to protect their partner and to grieve in their own way was important to the fathers.

Sanchez, N.A. 2001. Mothers' perceptions of benefits of perinatal loss support offered at a major university hospital. Journal of Perinatal Education. 10(2):23-30.

Methodology Qualitative (further details unspecified)

Methods In-depth semi-structured interviews (45 minutes – 1.5 hours).

Participants Twelve mothers aged between 30 and 44 of stillborn infants (gestation time 24 – 41 weeks)


Recruitment setting Quota sample from university hospital records with some stratification for type and time since loss.

Phenomena of interest Mothers’ perceived extent of recovery and the perceived influence on that recovery by a university hospital’s perinatal loss support program.

Authors’ conclusions The themes of timing of support, nurturance, verbal sensitivity, administrative aspects, loss preparation, and regard for providing support to extended family were described, as well as other hospital support services. Each appears to be important, congruent with existing literature, and in need of further research. Also, the memorialization a hospital’s support protocol can begin for perinatal-loss patients should uniquely be examined in relation to grief recovery. It would be useful to survey how women who perceive themselves as somewhat recovered from perinatal loss have used such ritualisations to memorialize and celebrate the existence of the baby.

Sun, J. C., Rei, W. & Sheu, S. J. 2013. Seeing or not seeing: Taiwan's parents' experiences during stillbirth. Int J Nurs Stud.

Methodology Descriptive phenomenology

Methods Participant observation and in-depth interviews (60 – 120 minute) over one year (4 to 6 meetings per parent).

Participants Twelve couples (24 individuals) aged between 23 and 42 (gestation time 22 – 35 weeks)


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Country Taiwan

Recruitment setting Purposive sample of paired parents who terminated their pregnancies following diagnosis of fetal death in maternity units at a medical centre teaching hospital.

Phenomena of interest Couples’ stillbirth birth experiences. Specifically, the decisional meaning of parents seeing or not seeing their stillborn infant based mainly on the theoretical framework of Husserlian phenomenology.

Authors’ conclusions Participants experienced acts of seeing and not seeing throughout their denial or facing of ongoing bereavement, which was influenced by their personal beliefs, readiness for the event, and social values. Health professionals need to understand the powerful interpretation of the ‘‘visual’’ meaning of the stillbirth experience and learn to be sensitive, empathetic and keep communication lines open in order to create and maintain a compassionate and caring environment.

Trulsson, O. & Rådestad, I. 2004. The silent child--mothers' experiences before, during, and after stillbirth. Birth (Berkeley, Calif).31(3):189-95.


Methods Interviews (averaging 90 minutes)

Participants Twelve mothers (ages not reported). Time since stillbirth: six to 18 months (gestation time greater than 24 weeks).

Country Norway

Recruitment setting Mothers gave birth at Ullevål University Hospital and received a letter inviting them to participate in the study.

Phenomena of interest Women’s experiences before and during the diagnosis of the baby’s death, the birth, and the time shortly after birth.

Authors’ conclusions The period between diagnosis of intrauterine death and induction of birth may give health professionals a major opportunity to improve a woman’s ability to cope with the event of stillbirth and prepare her to meet with her loved but now silent baby. Further clinical research can identify supportive mechanisms for parents, and sources of iatrogenic psychological trauma that should be eliminated.

Weaver-Hightower, M.B. 2012. Waltzing Matilda: An autoethnography of a father's stillbirth. Journal of Contemporary Ethnography. 2012;41(4):462-91.

Methodology Autoethnography


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Methods A personal narrative and essay on the experience of stillbirth using autoethnographic methods (interviewing others, self-artifact, photo elicitation, discovering self through others’ published memoirs and autobiographical essays, reflective memoing, participant-observing in a bereavement support group, collecting artifacts, and creating art and scrapbooks.

Participants One father (age not reported) of a stillborn baby (gestation approximately 38 weeks). Time since stillbirth around six months (inferred).


Recruitment setting Author is an associate professor of Educational Foundations and Research at the University of North Dakota.

Phenomena of interest The author’s experience of his daughter Matilda’s stillbirth.

Authors’ conclusions The author explores stillbirth, grief, tactile contact with death, and how all of these demonstrate the strictures and ruptures of masculinity in Western cultures. The author counterposes these realities against the political, economic, and medical discourses of stillbirth as a means of exploring how social structures mediate and complicate parents’ experiences of their children’s deaths. Fathers’ experiences form the core of the analysis, for both the scientific literature and cultural texts about grief and perinatal death often discursively elides these experiences.

Worth, N. J. 1997. Becoming a father to a stillborn child. Clin Nurs Res, 6, 71-89.

Methodology Exploratory descriptive. Constant comparison content analysis (grounded theory – unstated)

Methods Unstructured face to face or telephone interviews (20 minutes to four hours – most over two hours)

Participants Eight fathers (age unreported). Gestation time 26 – 41 weeks. Time since stillbirth two months to five years.

Country Canada

Recruitment setting Convenience sample. Participants recruited via a newspaper advertisement, contacts within a perinatal support group and personal contacts.

Phenomena of interest To identify and describe the reaction of fathers to a stillborn child.

Authors’ conclusions The basic social process that the fathers in this study experienced was becoming a father to the stillborn child. The fathers were trying to assume a fathering role while they were grieving the death of their child. Understanding the process of becoming a father to a stillborn child is of value to healthcare professionals when considering ways to help fathers who


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have experienced such a loss.

Yamazaki, A. 2010. Living with stillborn babies as family members: Japanese women who experienced intrauterine fetal death after 28 weeks gestation. Health care for women international. 31(10):921-37.

Methodology Qualitative methodology based on grounded theory

Methods In-depth, semi-structured interviews (two – three hours) between January 2006 and April 2008.

Participants Seventeen mothers (aged 28 – 38) of stillborn infants (gestation time greater than 28 weeks). One to six years after stillbirth.

Country Japan

Recruitment setting Participants were recruited via invitation letters sent to self-support groups.

Phenomena of interest To describe the meaning of intra uterine fetal death (IUFD) in the lives of Japanese women in a local community by interviewing those who experienced IUFD after 28 weeks of gestation in chronological order from the time they were told of the fetal death to the present day.

Authors’ conclusions In recent years, pregnancy and childbirth have become precious lifetime experiences for Japanese women. The significance of these life experiences differs between these women and those who gave birth to and raised four to five children in their twenties, as was common in the 1950s, when the fetal death rate was five times higher. Thus, women found meaning in facing the death of their child late in their pregnancy. The 17 women who had experienced IUFD raised their dead children through “the development process of becoming a parent,” as demonstrated in this study; in addition, through “the grieving process after the loss of a child,” they went through a year-long process of grieving. During that period, these women came to terms with their partners and family members, and they found child-rearing friends to help raise the dead child and were living with the dead child as if the child were a family member.


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FINDINGS FROM QUANTITATIVE DATA

One randomised controlled trial was included in the review (Kersting et al. 2011). The findings of the study indicate that women who had undertaken the therapy showed significant improvement in posttraumatic stress, grief, depression and overall mental health after treatment and at 3-month follow-up compared to controls. However, the study did not stratify outcome data by subpopulation and consequently, the outcomes for women who had experienced a stillbirth could not be disaggregated and extracted from the pregnancy loss population as a whole. The first author of the study was contacted via email with a request to provide the outcome data for the sample of stillbirth participants; however, no response was received at the time of writing this review.

META-SYNTHESES OF QUALITATIVE FINDINGS

Review question 2: What are the families’ experiences of interventions and strategies aimed at improving their psychological well-being following stillbirth?

Twenty of the studies included in this review contributed 209 extracted findings that were relevant to this review question. The findings and their supporting illustrations extracted from each included study are presented in Appendix VI. There were 11 extracted findings that were classed as ‘Unsupported’ (see Appendix VII). Three findings were categorised and used in the syntheses for both Question 2 and 3. A total of 42 categories were created on the basis of similarities in meaning and relevant period in the sequence of events through the stillbirth experience (see Methods). From these 42 categories, five synthesised findings (meta-syntheses) were produced.

The following five syntheses are presented according to the period within the overall stillbirth experience to which their component findings are most relevant. The first synthesis includes findings relevant to the overall experience of stillbirth: from diagnosis to many years later. The second synthesis relates specifically to the period when parents of a stillborn infant are first informed of the diagnosis of stillbirth. The third synthesis includes findings related to the period around the time of induction and birth. The fourth synthesis contains findings that relate to the period immediately after birth when parents may have the opportunity to see and hold their baby. The fifth and final synthesis contains findings related to any time beyond the immediate post-birth period.

Each synthesis is presented with an overall description of the main synthesised finding, a figure representing the meta-synthesis and a discussion of overall synthesis created and the categories that inform it.

Meta-synthesis 1: Throughout the experience of stillbirth; from diagnosis and even many years later, strategies for information provision, emotional support and health care systems should be implemented with sensitivity, genuineness and consideration of individuals needs for care.

This meta-synthesis is created from 69 findings formed into 10 categories (Figure 6). Thirty eight findings were classed as ‘unequivocal’ and 31 findings were classed as ‘credible’. This meta-synthesis highlights a number of factors that influence and relate to parents’ experiences of the interventions and strategies that health care professionals may or may


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not engage in throughout the overall experience of stillbirth from the point of diagnosis forwards over time. Categories within this meta-synthesis and the findings that contribute to them relate to each of the previous meta-syntheses. This meta-synthesised finding emphasises the important role that health care professionals can play in sensitively and genuinely preparing parents for the various stages, processes, experiences and events encountered throughout the entire experience of stillbirth.


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FIGURE 2: META-SYNTHESIS OF FINDINGS RELEVANT TO THE OVERALL EXPERIENCE OF STILLBIRTH

Findings Categories Synthesised Finding

[Hospital support in the loss experience: Loss Preparation] When the loss was anticipated, preparation for the perinatal loss and information about what the delivery and recovery would involve was reported among the interviewees. (Sanchez, 2001) (U)

Preparing parents for the experience of stillbirth.

[Hospital support in the loss experience: Partner Concerns] Partner involvement was another theme of the hospital support of the loss. Seven of the interviewees spontaneously mentioned times when their partner was negatively impacted by non-inclusion during the recovery process. (Sanchez, 2001) (U)

Parents’ needs: making those irretrievable moments precious: Women who had an antenatal diagnosis that their baby had died reported that they had a strong desire for information relating to what was likely to happen during their labour and birth, at each stage of induction, labour and delivery. They needed professionals to be forthcoming when describing the likely physical deterioration of the baby by the time of the birth. (Downe et al., 2013) (U)

Findings: [Support for Parent Emotion] (E)nlisting supportive others. (Pullen et al., 2012) (C)

Enlisting supportive others for emotional support.

Unhelpful things: Another unhelpful approach was the tendency to ritualize the guidelines. (Dyson & While, 2008) (C)

[The system] [ambiguities and definitional issues] Several issues caused particular distress…attributed such issues to hospital policy and procedure…(Lee, 2012) (U)


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[Hospital support in the loss experience: Administrative Aspects] The administrative aspects of the hospitalization —such as rooming arrangements, errors in care, and confusing information—were reported by seven of the interviewees, ranging in comments from negative to extremely negative in feeling. (Sanchez, 2001) (C)

Health care systems, administrative processes, policies and procedures throughout the stillbirth experience can cause distress.

[Hospital support in the loss experience: Timing of Support] Much of what women reported about their grief-recovery experiences with the hospital had a temporal theme. In many cases throughout the interviews, the timing of support or the lack of good timing appeared to be important factors in a mother’s perception of an experience as positive or negative. (Sanchez, 2001) (C)

Continuity of care throughout the stillbirth experience: presence of the same health care professionals from the beginning.

[Presence of continuity of care] (Pullen et al., 2012) (C)

[Intervention] Exposure to babies and other pregnant women at this time was clearly distressing. (Lee, 2012) (U)

The hospital environment throughout the stillbirth experience: maternity / birth wards not designed to support mothers during the stillbirth experience.

[Unique message elements] (N)egative HCP communication…(I)solation (Pullen et al., 2012) (C)

[Broken expectations] (S)till having the dead baby inside one’s body and being confronted with newborn babies in the women’s ward…experienced as an extremely difficult situation. (Malm et al., 2011) (U)

[The typical labor and delivery environment is not designed to support parents during a stillbirth: “I could hear other babies crying”] Several mothers reported that hearing noises of the bustling


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activity and other births around them added to their suffering. (Kelley and Trinidad, 2012) (U)

[Support for Parent Emotion] (R)elocation (Pullen et al., 2012)

[Parents struggle with the silence and taboo that surrounds stillbirth: “I know it makes some people uncomfortable, but I want to talk about my daughter”] … (T)he grief of stillbirth as being just as deep, painful, and significant as it would be to lose an infant who is born and survives a few weeks in intensive care. (Kelley and Trinidad, 2012) (C)

Health care professional validation of the parents’ emotional experience of stillbirth as a human tragedy rather than a medical procedure.

[Understandings: medical problem or baby] (H)ealth professionals seemed to view the event primarily as a medical procedure to end a non-viable pregnancy, while the women and their partners viewed it as the birth and death of a child. (Lee, 2012) (C)

[Support for Parent Emotion] (V)alidation of feelings (Pullen et al., 2012) (C)

[What to say and not to say following a stillbirth: “Don’t say, ‘You are young—you can have another’”] (W)ell-meaning but hurtful comments from clinicians who meant to be supportive but simply did not know what to say or do to offer comfort after a stillbirth. (Kelley and Trinidad, 2012) (U)

Helpful things: Women often commented that it helped when professionals (and others) acknowledged the reality of their loss. (Dyson and While, 2008) (U)

[Unique message elements] (N)egative HCP communication… (S)tillbirth being cast as beneficial (Pullen et al., 2012) (C)


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[What to say and not to say following a stillbirth: “Don’t say, ‘You are young—you can have another’”] (Kelley and Trinidad, 2012) (C)

Helpful things: In some cases, other parents appreciated hearing the midwives’ memories and recollections of the baby and the birth. (Dyson and While, 2008) (U)

[Reflections] (C)are and compassion showed by staff. (Lee, 2012) (U)

[Unique message elements] (N)egative HCP communication… (C)ontradiction of experience (Pullen et al., 2012) (C)

Parents’ experiences (enduring and multiple loss): the pressure to make decisions, at a time when [parents] felt completely psychologically incapacitated, and the perceived inability of professionals to notice their state of mind or respond to their needs and requests led respondents to experience intense frustration. (Downe et al., 2013) (C)

Collaborative, incremental decision making, sensitive guidance and negotiation at every stage.

Collaboration and negotiation: the importance of collaboration and negotiation between medical personnel and patients in medical decision-making. (Corbet-Owen and Kruger, 2001) (U)

[Information and decision-making] (S)ympathetic advice and assistance with decision-making. (Lee, 2012) (U)

Knowledge and information: when explanations were given and the implications for various decisions were discussed, participants felt more in control. (Corbet-Owen and Kruger, 2001) (U)

Parents’ needs: making those irretrievable moments precious: Upon diagnosis of their stillbirth, parents found


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themselves facing the unknown. They needed guidance from professionals to navigate the unforeseen circumstances of their child’s birth. Although parents had no power to decide about the ultimate outcome of the birth, they appreciated being able to make incremental choices about the process. (Downe et a., 2013) (C)

Throughout the experience of stillbirth; from diagnosis and even many years later, strategies for information provision, emotional support and health care systems should be implemented with sensitivity, genuineness and consideration of individuals needs for care.

Sensitive and personal care: Validating women’s experiences and collaborative care can only take place if women are treated with sensitivity and humanity. (Corbet-Owen and Kruger, 2001) (U)

[Support in Bereavement] “(S)upport in bereavement” includes support by caregivers and laypersons. (W)ords and formulations could be the same, but the emotional message could be different from, or opposite to, the empathic communication. (Säflund et al., 2004) (U)

[Support in Bereavement] “(S)upport in bereavement” includes support by caregivers and laypersons. A piece of information or suggestion that was given to the parents could have two very different characteristics. It could be warm and empathic and full of subtle understanding of the mental pain that parents were experiencing, or it could lack sensitivity and psychological insight. (Säflund et al., 2004) (C)

[Support in Chaos] “(S)upport in chaos” includes structured information and help in relieving despair. (Säflund et al., 2004) (C)

Unhelpful things: the dominant unhelpful approach would


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be classed as the lack of professional skill and uncertainty, usually in relation to communication and news-breaking skills. (Dyson and While, 2008) (C)

Individualised and inclusive information provision throughout the stillbirth experience: timing, detail, clarity and sensitivity

[Support in Chaos] “(S)upport in chaos” includes structured information and help in relieving despair. They wanted some moments to recover before receiving information about the next step. (Säflund et al., 2004) (U)

Lack of knowledge: The mothers frequently expressed their lack of knowledge about stillbirth and how vulnerable it made them feel. Healthcare professionals need to understand how much information individual parents need. (Dyson and While, 2008) (U)

Helpful things: Information giving was viewed as being an important and helpful element of care, i.e. clear verbal explanations, repeated if necessary, and the information given in written form. (Dyson and While, 2008) (C)

[Information sharing] (E)xplanation (Pullen et al., 2012) (C)

Unhelpful things: An important theme was what the midwives implied by what they said or did. (Dyson and While, 2008) (U)

[Intervention] (S)taff as supportive and informative… (F)eeling that it made the baby ‘more real’ and brought home to them their connection with the child and its material existence. (Lee, 2012) (U)

Helpful things: Honesty and genuineness were considered important qualities for staff in this situation to have. Parents wanted straightforward, honest answers to their questions


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and appreciated staff who were willing to share the experience and their own emotions with them. (Dyson and While, 2008) (U)

Sensitive and personal care: When they were made to feel they were special patients, participants felt even more validated. (Corbet-Owen and Kruger, 2001) (U)

Parents’ needs: making those irretrievable moments precious: Where parents encountered genuine, authentic caring (caritas), it provided a sense of being protected from the raw horror of what had happened to them around the time of birth. (Downe et al., 2013) (C)

[Role of the health professionals] This nurse inflicted pain rather than relieving it… was cold, callous, and never once asked how we were. (O’Neill, 1999) (U)

[Role of the health professionals] … I remember their actions more than their words…(O’Neill, 1999) (U)

[Role of the health professionals] (N)ursing staff needs to be more aware of parents in this clearly difficult time… They can assist the grieving process or hinder it. (O’Neill, 1999) (U)

[Clinician empathy and rituals to honor a baby’s death are important to parents: “They encouraged us to take pictures—I’m glad we did”] (P)hysician’s instincts or training may have led him to attempt to protect the patient from his emotional reaction, the patient instead found the reaction to be deeply human and a sign of shared grief over a terrible loss. (Kelley and Trinidad, 2012) (U)


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[Clinician empathy and rituals to honor a baby’s death are important to parents: “They encouraged us to take pictures—I’m glad we did”] All parents valued eye contact, empathy, and emotional engagement from their physicians. One mother was very moved by her physician’s grief. (Kelley and Trinidad, 2012) (U)

Genuine, respectful caring and personal support and communication throughout the stillbirth experience.

Clinician empathy and rituals to honor a baby’s death are important to parents: “They encouraged us to take pictures—I’m glad we did”] Most meaningful for all parents were the physicians and nurses who took time to sit with them, look them in the eye, and be present with them in their sadness. (Kelley and Trinidad, 2012) (U)

Sensitive and personal care: when medical professionals reacted with humanity and warmth, it made a big difference to participants. (Corbet-Owen and Kruger, 2001) (U)

[Information and decision-making] …(L)ack of empathy… from…care provider. (Lee, 2012) (U)

[Expression of sympathy] (Pullen et al., 2012) (C)

[Unique message elements] (N)egative HCP communication…(B)lame (Pullen et al., 2012) (C)

(Lack of) Care in the caring: The best care possible to the worst imaginable: minimal regard for [parents’] needs and emotions shown by caregivers. (Downe et al., 2013) (U)


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[At the hospital] (T)he father’s grief may be hidden from view…critical that he still receives attention, care, and nonjudgmental attitudes from staff. (O’Neill, 1999) (U)

(Lack of) Care in the caring: respondents reported excellent, empathic, competent, respectful, humane, skilled and emotionally intelligent care. (Downe et al., 2013) (U)

[Hospital support in the loss experience: Nurturance] Nurturance appeared to be another strong theme in the interviewees’ assessment of the support for perinatal loss grief. (Sanchez, 2001) (C)

Knowledge and information: In the absence of reassurance from medical personnel, guilt, which appears to be the most difficult emotion for women to resolve without help, prevails. (Corbet-Owen and Kruger, 2001) (U)

Parents may wish to investigate and know the cause of the death of their baby which may help with feelings of guilt and informed preparation for a subsequent pregnancy.

[Expressed uncertainty by HCP] Parents in both groups also reported that HCPs expressed uncertainty about why the baby died. (Pullen et al., 2012) (C)

[Information sharing] (C)ause of death (Pullen et al., 2012) (C)

[From diagnosis to delivery, events are confusing and shocking: “No one tells you—you still have to deliver your baby”] (P)arent participants who were also health care professionals requested an autopsy… (Kelley and Trinidad, 2012) (U)

[Explanation of the Stillbirth]


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“(E)xplanation of the stillbirth” includes the mothers’ feeling of guilt and the medical diagnosis. If the stillbirth was not investigated medically, these parents thought that it might have a negative impact on any new pregnancy…(A) correct explanation of the stillbirth is an important issue for parents… (Säflund et al., 2004) (U)

[From diagnosis to delivery, events are confusing and shocking: “No one tells you—you still have to deliver your baby”] Parents who experienced stillbirth wanted to understand the cause of their child’s death and found it frustrating when no answers could be given. (Kelley and Trinidad, 2012) (U)

Parents’ needs: making those irretrievable moments precious: most emphasized the importance of discussions and accurate information about maternal and child blood tests, placental investigations, postmortem examination and any other tests that could be conducted. (Downe et al., 2013) (U)


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Discussion of meta-synthesis 1; Overall experience of stillbirth

The findings of this review demonstrate that throughout the experience of stillbirth, from the initial diagnosis onward, some parents desire continuity of care by the same healthcare professionals where possible. This highlights that parents appreciate when healthcare professionals who provide care leading up to and during a subsequent pregnancy are familiar with their prior stillbirth experiences. From the findings contained within this synthesis, it is clear that while the experience of stillbirth has a relatively defined starting point at the time of diagnosis, an ‘end’ is not as easy to establish or congruent with parents’ experiences. This understanding is supported by findings that reveal that healthcare professionals’ can potentially over-medicalise stillbirth and not attend to the human tragedy of the parents’ experience of stillbirth as the shocking and unexpected death of their baby.

The findings show that parents appreciate even small signals of sympathy and value when healthcare professionals engage in genuine and personal communication. While professionalism and clinical expertise is desired at all times, disengaged or clinical demeanours can result in parents feeling isolated, blamed or ignored. Ignoring parents’ emotional states, inferring blame through insensitive or cold communication and not attending to both parents’ emotional states in communication can be a source of distress and pain.

During every phase of the stillbirth experience both parents desire forthcoming, step-by-step information in advance of every procedure and event in order to know what to expect. The findings illustrate that it is vital for parents that partners are included in the provision of information. When communicating with and providing information to parents throughout the stillbirth experience, healthcare professionals are able to positively validate the parents’ experiences and emotional state. The findings demonstrate that some well-meaning healthcare professionals may be unaware that certain comments, while intended to be reassuring may augment parents’ distress and contradict or diminish their experience. For example, a number of findings illustrated that parents rarely value being told that they can ‘have another baby’. It should however be understood that other parents do want to know immediately if they can have another baby. Healthcare professionals therefore need to be aware of the unique needs of parents and be able to judge the most appropriate timing for providing reassurances of future parenthood.

Being able to judge the most appropriate approaches for each parent and couple should be based upon the inclusion of both parents in any decision making processes throughout the stillbirth experience. The findings demonstrate that parents desire the guidance of healthcare professionals that incorporates clear and thorough information that is provided in a sensitive and respectful manner. Parents have differing information provision needs and preferences; the amount of information, its timing and complexity can be individual to all parents. During all phases of the stillbirth experience, information should be provided with consideration for the parents’ emotional state; both in regard to their ability to take in and process information as well as their need for structured, clear and supportive information.

Health care professionals may also need to remember that parents might perceive informative messages differently and pick up upon implied connotations, so clarity and repetition may be necessary. Parents may wish to investigate the cause of their baby’s death. Having a medical explanation for why their baby was stillborn may be experienced by parents as helpful for dispelling feelings of guilt and blame. Parents may have differing preferences regarding the timing of receipt of this information – some may want immediate


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explanations while others may desire this information later on. The findings show that lack of an explanation can be experienced as dismissive and frustrating for parents and perceived as a deliberate withholding of important information. Medical investigation into a cause can be perceived as potentially helpful regarding understanding risks for future pregnancies. The findings demonstrate that some parents may express regret regarding their decision not to have an autopsy, so the option of an autopsy or other investigative procedures to determine cause of death should be sensitively offered at an appropriate time.

Findings that related to every phase of the stillbirth experience highlighted that many parents experience maternity ward environment, its processes and policies as not designed to meet their particular needs as parents experiencing a stillbirth. Distressing rooming arrangements were frequently raised in the findings demonstrating that often while parents prefer to not be exposed to the cries of other babies and other mothers giving birth, removing the parents of stillborn infants from the maternity environment completely can also be distressing and isolating for parents.

Meta-synthesis 2; Diagnosis: A number of factors around sensitivity, clarity, validation of emotions, provision of understandable information and timing impact upon parents’ experience of being told that their baby has died or will be stillborn.

This meta-synthesis derives from 30 findings organised into 6 categories (Figure 2). Seventeen findings that appear in this synthesis have been classed as ‘unequivocal’ and 13 findings as ‘credible’. Within this meta-synthesised finding a number of findings have been included in two or more categories (Figure 2). This synthesised finding highlights a number of factors that influence and relate to parents’ experiences of the interventions and strategies that health care professionals may or may not engage them in at and around the point of receiving the news that their baby has died or will be stillborn.

Prominent elements of this synthesised finding and categories created to support it are that communication of and around the time of a stillbirth diagnosis that is sensitive, appropriate and reassuring tends to be experienced positively by parents. Blunt, disengaged styles of communication and information provision can cause distress to parents and their families. Information provided to parents should be timely, clear, understandable and presented in way that is mindful of parents’ emotional state and with realisation from the health professionals that they may be experiencing a potentially compromised ability to take in and process information. Findings regarding the parents’ experiences indicate that information could thus be presented in a step-wise manner and in a way that is respectful and that validates parents’ emotional experiences. Disregarding or diminishing parents’ emotional experiences may lead to feelings of isolation and distress. Delays or ambiguity in informing parents’ of the death of their baby can be perceived and experienced negatively. Parents may desire continuity of care following on from a diagnosis of stillbirth and may wish to continue to see the same health care professionals after diagnosis.


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FIGURE 3: META-SYNTHESIS OF FINDINGS RELEVANT TO THE PERIOD OF DIAGNOSIS OF THE STILLBORN BABY


[Support for Parent Emotion] (T)ime/space for feelings . (Pullen et al. 2012) (C)

Sensitive, appropriate and reassuring information provision by health care professionals regarding informing parents of the diagnosis of stillbirth.

[Noted Exit of HCP] Parents who perceived HCP communication negatively noted that the HCP exited immediately following communication of death. (Pullen et al. 2012) (C)

[Confirmation of the death – Inconsiderate and unclear communication] The information was sometimes presented bluntly and no further discussion of what was seen on the screen was encouraged. (Rådestad et al. 2013) (U)

Diagnosis: Parents demonstrated that at this stage they were very sensitive to, and remembered, the remarks of staff and also whether or not they had been supportive. (Dyson and While, 2008) (U)

[Unique message elements] (N)egative HCP communication… (R)eassurance. (Pullen et al. 2012) (C)

[Expressed uncertainty by HCP] Parents perceiving HCP communication positively reported uncertainty being paired with hopefulness… (Pullen et al. 2012) (C)

[Pregnancy and diagnosis] Distress was affected by seemingly minor actions by health care staff… (Lee, 2012) (U)

[Information and decision-making] (C)ounselling was inappropriate or insensitive. (Lee, 2012)


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(U)

[Communication of death] Communication of death varied in that it could be: (a) direct—the parent was told that the baby had died; (b) indirect—HCPs communicated with each other regarding the baby’s lack of organ activity within hearing of the parent; (c) implied—a parent must infer a diagnosis from a HCP’s comment; and/or (d) nonverbal—a parent sees lack of fetal heartbeat on the monitor or the look on a HCP/family member’s face and knows the baby is dead. (Pullen et al. 2012) (C)

[Experiencing that the baby was no longer alive]…(F)athers found consolation in their adversity through confirmation of their misgivings and reactions and through support and information. (Samuelsson et al. 2001) (C)

[Before the birth] The women described the time immediately after they learned their baby was dead as unreal and numbing. They were in turmoil with feelings of anger and sorrow. They had difficulty comprehending what had happened and what it all meant. All the women wanted simply to escape from the entire situation. The dead baby within was perceived as indefinable and frightening. They wanted to get rid of the dead child immediately. (Trulsson and Radestad, 2004) (U)

[Expressed uncertainty by HCP] Parents who perceived HCP communication negatively reported that HCPs… (Pullen et al. 2012) (C)

[Communication of death] Communication of death varied in that it could be: (a) direct—the parent was told that the baby had died; (b)


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indirect—HCPs communicated with each other regarding the baby’s lack of organ activity within hearing of the parent; (c) implied—a parent must infer a diagnosis from a HCP’s comment; and/or (d) nonverbal—a parent sees lack of fetal heartbeat on the monitor or the look on a HCP/family member’s face and knows the baby is dead. (Pullen et al. 2012) (C)

Clear explanation and information around the diagnosis of stillbirth and following steps in care.

[Confirmation of the death – Inconsiderate and unclear communication] The verbal report of the baby's death was experienced by the mothers as being unclear and…presented in such a way as to indicate a lack of respect for the situation… (Rådestad et al. 2013) (U)

[Information withholding] Parents who perceived HCP communication negatively …(D)id not receive information regarding the baby’s death or the information they needed to make important decisions. (Pullen et al. 2012) (C)

[Courage to face life] When they had realized that the baby they were carrying was not the expected child, they had started asking about the possibility of another pregnancy. (Malm et al. 2011) (U)

[Pregnancy and diagnosis] (S)everal (Health professionals) used language which the women did not understand. (Lee, 2012) (U)

[Before the birth] All women said that it would have given them a great sense of security if they had met the same caregivers at induction of labor as those on the day the stillbirth was diagnosed. They stressed the importance of calm, dependable


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caregivers, who had time to give them clear information about what was going to happen. (Trulsson and Radestad, 2004) (U)

A number of factors around sensitivity, clarity, validation of emotions, provision of understandable information and timing impact upon parents’ experience of being told that their baby has died or will be stillborn.

[Noted Exit of HCP] Parents who perceived HCP communication negatively noted that the HCP exited immediately following communication of death. (Pullen et al. 2012) (C)

Validation of emotions around the experience of stillbirth diagnosis.

[Experiencing that the baby was no longer alive]…(F)athers found consolation in their adversity through confirmation of their misgivings and reactions and through support and information. (Samuelsson et al. 2001) (C)

[Involuntary waiting] (A)fter… they had received the news of their baby’s death they were left on their own or alone with their partner. Several mothers…felt abandoned and out of control in this situation. (Malm et al. 2011) (U)

[Suppression of Parent Emotion] Parents who perceived death notification more negatively recalled that attempts were made to suppress their emotions. (Pullen et al. 2012) (C)

Three women thought that they were not given priority or that they were not considered important once it was known their child was dead. They felt the information they received was insufficient, they had to change rooms several times, they saw several different doctors, and several midwives were involved in their delivery. (Trulsson and Radestad, 2004) (U)

[Before the birth] One source of trauma above and beyond the loss itself may be a woman’s initial contact with a health care service about


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her suspicion that the baby has died in utero. (Trulsson and Radestad, 2004) (C)

Clearly my wife didn’t know yet, for we talked just after about how mad it made her that the technician would keep a pregnant woman frightened instead of just letting her know. (They never hesitate to break protocol when everything is OK, after all). (Weaver-Hightower, 2012) (U)

Inconsiderate delays, avoidance and lack of transparency in the provision of information regarding the confirmation of a diagnosis of stillbirth.

[Confirmation of the death – Inconsiderate and unclear communication] Some clinicians delegated the task of presenting the devastating news of the death to a colleague…not taking the responsibility for telling them that the baby was dead… (Rådestad et al. 2013) (U)

[Delay of news delivery ] Following an initial indication of possible death such as a heartbeat not being detected during an ultrasound, a HCP may take additional measures to confirm the diagnosis, thus the process of diagnosing the baby’s death is delayed. (Pullen et al. 2012) (C)

[From diagnosis to delivery, events are confusing and shocking: “No one tells you—you still have to deliver your baby”] While partly due to the suddenness and unexpected nature of having a stillbirth, others felt that physicians purposely were not telling them why their baby had died. (Kelley and Trinidad, 2012) (U)

[Body language of staff] ...(A)ny delay in presenting verbal information triggers feelings of anxiety and makes them feel that they are being excluded, at least during the period of silence. (Rådestad et


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al. 2013) (U)

[From diagnosis to delivery, events are confusing and shocking: “No one tells you—you still have to deliver your baby”] Stillbirth is often confirmed by ultrasound; several parents reported encounters with technicians who were extremely uncomfortable giving or confirming the news that their baby had died. (Kelley and Trinidad, 2012) (U)

[Before the birth] (Trulsson and Radestad, 2004) (U)

[Support for Parent Emotion] (T)ime/space for feelings. (Pullen et al. 2012) (C)

Having time and space to absorb information relating to the diagnosis of stillbirth: health care professional consideration for emotional state.

[Before the birth] The women described the time immediately after they learned their baby was dead as unreal and numbing. They were in turmoil with feelings of anger and sorrow. They had difficulty comprehending what had happened and what it all meant. All the women wanted simply to escape from the entire situation. The dead baby within was perceived as indefinable and frightening. They wanted to get rid of the dead child immediately. (Trulsson and Radestad, 2004) (U)

[Hospital support in the loss experience: Timing of Support] The Presence of the doctor or nurse at the delivery was another temporal issue important to the interviewees. (Sanchez, 2001) (C)

Continuity of care from the point of stillbirth diagnosis to the induction of labor.

[Expressed uncertainty by HCP] Parents who perceived HCP communication negatively reported that HCPs… (Pullen et al. 2012) (C)

[Before the birth] All women said that it would have given them a great sense


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of security if they had met the same caregivers at induction of labor as those on the day the stillbirth was diagnosed. They stressed the importance of calm, dependable caregivers, who had time to give them clear information about what was going to happen. (Trulsson and Radestad, 2004) (U)

[Lack of continuity of care] (Pullen et al. 2012) (C)


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Discussion of meta-synthesis 2; Diagnosis.

When parents are informed of the death of their baby due to stillbirth, a number of factors around sensitivity, clarity, validation of emotions, provision of understandable information and timing can impact upon their experiences. The healthcare professionals that inform parents of the diagnosis of stillbirth or those that provide counselling soon after should do so with sensitivity and consideration for parents’ emotional state at the time of diagnosis.

At the time of diagnosis of stillbirth, parents can experience that health professionals may either positively validate their emotional reactions and provide consolation or negatively disregard and diminish them leading to feelings of distress and isolation. The findings demonstrated that parents who perceived health care professionals’ communication negatively at this time noted certain attitudes or behaviours that increased their anxiety or distress such as exiting immediately following communication of death or delegating communication of the death to someone else. Parents can negatively experience any delays in being informed of a diagnosis of stillbirth. Body language, ambiguous communication, silences and the delegation of the task to others can be perceived by parents as negative and distressing and occasionally intentional. It should be noted that while parents found these kinds of behaviours distressing, health professionals were often noted as being distressed also, which may have caused them to act in this way.

Stillbirth is often confirmed by ultrasound and several parents reported distressing encounters with ultrasound technicians who were extremely uncomfortable giving or confirming the news that their baby had died. While some parents may wish to have some time and space to come to terms with the tragedy of their loss, health care professionals can be sensitive to how they act at this time so as not to leave parents feeling isolated or abandoned. Blunt or disengaged styles of information provision can upset parents and even minor actions and comments can impact upon distress. Parents desire clear and understandable language and communication from health care professionals at the time of diagnosis of stillbirth. Mothers can experience difficulty in absorbing the shocking information at their baby has died and may react with numbness or fear. Being sensitive to mothers’ emotional state and potentially compromised ability to quickly process information by allowing time and space if needed may be appreciated. Many parents expressed their need for guidance from health care professionals from the time they were informed of the death to being given information ensuing birth.

Continuity of care and reinforcing positive feelings of security and trust were linked to parents and families seeing the same healthcare professionals during the periods following diagnosis as opposed to the seeming disappearance of the healthcare professional/s who were present at the time of diagnosis. Some mothers said that they would have felt more secure if they could have had the same health care professionals at induction of labour as those on the day the stillbirth was diagnosed.


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Meta-synthesis 3; Induction and birth: A number of factors around sensitivity, clarity, the importance of preparation and explanation, preferences regarding timing and having time to process information impact upon parents’ experience of interventions and strategies around the time of induction and birth of their stillborn baby.

This meta-synthesis is created from 23 findings formed into 8 categories (Figure 3). Within this synthesised finding, 10 findings were classed as ‘unequivocal’ and 13 findings were classed as ‘credible’. Within this meta-synthesis a number of findings have been included in two or more categories (Figure 3).This meta-synthesis highlights a number of factors that influence and relate to parents’ experiences of the interventions and strategies that health care professionals may or may not engage them in leading up to induction and or birth of their stillborn baby.

Prominent elements of this synthesised finding are parents’ experiences regarding the sensitivity, kindness and respect that health care professionals can support them with as well as the ongoing need for clear and incremental information and explanation of the induction and birthing process. The emotional state of both parents may still impact upon their abilities to process information and individuals may also have differing preferences regarding how long they would prefer to wait between notification of the death of their baby and induction of birth. The language and terminology used regarding stillbirth and various hospital processes may be distressing to mothers. Consideration for parental preferences and the differences between individuals is important in supporting parents around the induction and birth of their baby. Consideration for the possibility that the birth ward environment may not be designed to support parents during a stillbirth is also important.

This meta-synthesised finding contains the largest number of categories that are based solely on findings that relate to data pertaining to the experiences of mothers. Mothers may have differing needs regarding their preparation for birth; knowing what to expect and having time to process this information can be important. Some mothers may not appreciate delays between diagnosis and induction and find waiting for extended periods meaningless or distressing. Mothers may also wish to be included collaboratively in decision making and may appreciate step-by-step explanations.


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FIGURE 4: META-SYNTHESIS OF FINDINGS RELEVANT TO THE PERIOD OF INDUCTION AND BIRTH OF THE STILLBORN BABY


[Hospital support in the loss experience: Non-nurturing Actions] …interviewees remembered non-nurturing actions as negative aspects of the recovery. (Sanchez 2001)(U)

Sensitivity, respect, kindness, inclusiveness and professionalism for both parents during labour.

[Living with the reality of the loss: A quiet birth without the child] The women gave birth within several days of the fetal death. Some remarked that they were able to endure the experience by looking forward to seeing their child. Every woman, however, either describing the experience as traumatic or recalling the support from medical personnel and calling the birth “a good delivery,” found the experience eclipsed by emptiness, anger, anxiety, loneliness, and sorrow. (Yamazaki 2010)(C)

[The delivery] Despite all the feelings of frustration, most fathers found reassurance in the care routine… (Samuelsson et al 2001)(C)

[The delivery] …(L)eft behind, outside of it all, confused, and submerged in a totally female-dominated world. (Samuelsson et al 2001)(U)

Labour: [some women] appreciated the staff’s sensitivity in accepting and responding to their feelings as they experienced them. It was important for the women to feel able to express themselves naturally and not to be expected to feel or behave in a certain way. (Dyson and While,


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2008)(C)

[The delivery] Ten women believed that they had been acknowledged and accepted in their sorrow: they thought that the midwives were standing by them, they were suitably attentive during the delivery, they sympathized, and that the women were received in a warm and caring fashion as individuals. A few women found the midwife insecure, but nonetheless caring. (Trulsson and Radestad 2004)(U)

[Intervention] (R)espect, kindness and professionalism of health care providers during and immediately after labour… (Lee 2012)(U)

[Communication regarding options] Parents perceiving HCP communication positively. (Pullen et al 2012)(C)

Clear and incremental information and explanation regarding the birthing process while recognising the emotional state of

[Information sharing] (I)nformation about what to expect or what the next steps were. (Pullen et al 2012)(C)

[Communication regarding options] …(P)arents perceiving HCP communication negatively emphasized being told what the next step would be without explanation. (Pullen et al 2012) (C)

[Involuntary waiting] (M)others…confused by the decision not to start induction since they had felt that they wanted to proceed and stop being pregnant as soon as possible. (Malm et al, 2011)(U)

[The delivery] All the women were informed that a vaginal birth would be


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best for them for both physical and psychological reasons. They all immediately perceived this plan as appalling—they saw no meaning in giving birth to a dead baby. (Trulsson and Rådestad, 2004)(C)

parents

[From diagnosis to delivery, events are confusing and shocking: “No one tells you—you still have to deliver your baby”] Disorientation, shock, and a perceived lack of communication from the clinical team made a difficult situation harder to bear for several parents. (Kelley and Trinidad, 2012)(U)

[Confirmation of the death – Elucidate information] (M)others said they felt better able to comprehend what had happened through sharing the death of their baby with another person…who could explain and break the silence; a ‘stepwise’ collaborative procedure created by the clinician. (Rådestad et al 2013)(U)

[Time between being told of the baby’s death and induction of labor] (Samuelsson et al 2001)(C)

The length of time between diagnosis of stillbirth and birth induction can be experienced differently for individual parents.

[Time between being told of the baby’s death and induction of labor] The desire to be left in peace at the same time that so many things had to be dealt with presented a conflict. (Samuelsson et al 2001)(C)

[Involuntary waiting] (M)others…confused by the decision not to start induction since they had felt that they wanted to proceed and stop being pregnant as soon as possible. (Malm et al, 2011)(C)

[Before the birth] The optimal duration between diagnosis of stillbirth and


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induction of delivery for each woman may depend on the circumstances, the woman’s needs, and the risks of psychological trauma above and beyond the loss itself. (Trulsson and Rådestad, 2004)(C)

A number of factors around sensitivity, clarity, the importance of preparation and explanation, preferences regarding timing and having time to process information impact upon parents’ experience of interventions and strategies around the time of induction and birth of their stillborn baby.

[Involuntary waiting] While awaiting the induction the mothers had been advised to go back home…(M)others described it as meaningless and involuntary. (Malm et al 2011)(U)

[Information sharing] (I)nformation about what to expect or what the next steps were. (Pullen et al 2012)(C)

Preparing mothers for the birth: knowing what to expect and having time to process information provided by health care professionals.

[Communication regarding options] …(P)arents perceiving HCP communication negatively emphasized being told what the next step would be without explanation. (Pullen et al 2012) (C)

[The delivery] All the women were informed that a vaginal birth would be best for them for both physical and psychological reasons. They all immediately perceived this plan as appalling—they saw no meaning in giving birth to a dead baby. (Trulsson and Rådestad, 2004)(C)

[From diagnosis to delivery, events are confusing and shocking: “No one tells you—you still have to deliver your baby”] Disorientation, shock, and a perceived lack of communication from the clinical team made a difficult situation harder to bear for several parents… (Kelley and Trinidad, 2012)(U)

[Before the birth] The optimal duration between diagnosis of stillbirth and


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induction of delivery for each woman may depend on the circumstances, the woman’s needs, and the risks of psychological trauma above and beyond the loss itself. (Trulsson and Rådestad, 2004)(C)

[Involuntary waiting] (M)others…confused by the decision not to start induction since they had felt that they wanted to proceed and stop being pregnant as soon as possible. (Malm et al, 2011)(C)

Collaborative care between health care professionals and mothers can reduce mothers’ distress and confusion regarding the birth.

[Confirmation of the death – Elucidate information] (M)others said they felt better able to comprehend what had happened through sharing the death of their baby with another person…who could explain and break the silence; a ‘stepwise’ collaborative procedure created by the clinician. (Rådestad et al 2013)(U)

[Involuntary waiting] While awaiting the induction the mothers had been advised to go back home…(M)others described it as meaningless and involuntary. (Malm et al 2011)(U)

[Time between being told of the baby’s death and induction of labor] The desire to be left in peace at the same time that so many things had to be dealt with presented a conflict. (Samuelsson et al 2001)(C) Personal, individual preferences regarding the

length of time between diagnosis and the induction of labour as well as the birthing can be considered.

[Before the birth] The optimal duration between diagnosis of stillbirth and induction of delivery for each woman may depend on the circumstances, the woman’s needs, and the risks of psychological trauma above and beyond the loss itself. (Trulsson and Rådestad, 2004)(C)

[Involuntary waiting]


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While awaiting the induction the mothers had been advised to go back home…(M)others described it as meaningless and involuntary. (Malm et al 2011)(U)

[Dealing with practicalities] The third practicality dealt with the unit to which the wife was transferred following the delivery. Six of the fathers were upset that their wives were transferred to a postpartum unit. Two of the father’s, however, believed that having a room on a postpartum unit was therapeutic. (Worth 1997)(U)

[The typical labor and delivery environment is not designed to support parents during a stillbirth: “I could hear other babies crying”] The default assumption that all parents in the labor and delivery suite are celebrating the joyous occasion of a healthy birth can be devastating for parents who have a stillbirth… (Kelley and Trinidad, 2012)(C)

[Dealing with practicalities] The third practicality dealt with the unit to which the wife was transferred following the delivery. Six of the fathers were upset that their wives were transferred to a postpartum unit. Two of the father’s, however, believed that having a room on a postpartum unit was therapeutic. Frank’s wife discharged herself 15 hours after the delivery because the only room available was right next to the nursery. Their wives could see normal healthy babies to help them realize that not all babies die, but they could also be alone in their private room if they wished. (Worth 1997)(U)

[The typical labor and delivery environment is not designed to support parents during a stillbirth: “I could hear other


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babies crying”] The default assumption that all parents in the labor and delivery suite are celebrating the joyous occasion of a healthy birth can be devastating for parents who have a stillbirth… (Kelley and Trinidad, 2012)(C)

General maternity/birth wards may not provide suitable environments for parents of stillborn infants in the time before induction and birth. Similarly, other wards may be experienced as isolating and distressing.

[The typical labor and delivery environment is not designed to support parents during a stillbirth: “I could hear other babies crying”] Delivery areas on obstetric units are designed to welcome new babies, not to mourn babies who have died. (Kelley and Trinidad, 2012)(C)

[The typical labor and delivery environment is not designed to support parents during a stillbirth: “I could hear other babies crying”] (Kelley and Trinidad, 2012)(U)

[The system] [ambiguities and definitional issues] (U)nable to have the treatment she would have preferred… (Lee 2012)

Definitions of medical procedures and medical language used in hospital processes at birth can be traumatic.


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Discussion of meta-synthesis 3; Induction and birth

Parents can experience healthcare professionals’ attitudes and communication at the time of birth as being warm, supportive and genuine. Such approaches to care are often recalled positively and are viewed by parents as being an important aspect of support and reassurance that can benefit their ability to cope emotionally and prepare for birth. Insensitivity to parents’ emotional state, as well as attitudes that seem judgemental or neglectful of parents’ emotions can be experienced by parents negatively and be recollected with anger. Non-inclusion in information provision or disregard of the mother’s partner’s feelings has also been reported by some participants who may feel ostracised, left out, or blamed by healthcare professionals.

Leading up to the birth, parents desire the clear communication of information and rationale for possible birthing options in order to prepare for birth. Recognition of parents’ potentially impaired ability to process information due to their emotional state adds to the importance of providing clear and step-by-step information. This may be particularly important when providing information to mothers regarding birth or time to induction. For many mothers, caesarean section is the most desirable mode of birth for stillbirth; however this birthing option seems to be seldom advisable. Some mothers may require careful and sensitive explanations of the reasons why vaginal birth is generally most advisable. When explaining medical procedures around pregnancy termination and birth, health care professionals can also be mindful that some medically correct language may be misunderstood or distressing to parents.

A number of studies have shown that prolonged delays between diagnosis and birth of the stillborn baby can be detrimental to parents’ wellbeing. Findings from this review suggest that parents can experience delays between diagnosis of stillbirth and the induction of birth differently depending upon their individual needs, circumstances and likelihood of developing of psychological trauma. While some parents may desire to have the birth induced as soon as possible following diagnosis of stillbirth, others may want to have some time to mentally prepare; the optimal duration between diagnosis and birth is purely an individual preference. Mothers may not find an extended delay between diagnosis of stillbirth and induction of labour to be meaningful or desirable; for example being advised by healthcare professionals to go home before the induction and then return when it is scheduled. Findings based upon research with fathers suggest that they too may have preferences regarding the time between diagnosis and birth. Parents’ personal preferences regarding delays could be considered in order to decide upon appropriate timing.

Individual mothers may have different needs in terms of preparing themselves for the birth of their baby. Knowing what to expect, having time to process the information given to them by healthcare professionals and having their preferences regarding the birth taken into account is often reported as being experienced positively. Conversely, insufficient communication of information and explanation is experienced negatively. Detailed, step-by-step explanations of the birth process that involve the mother in collaborative decision making and care may be experienced reduce confusion around reasons behind certain processes such as delays.

At the time of the birth and immediately afterwards, the physical environment of the hospital may not be experienced positively by parents as it is not necessarily equipped to support parents who have lost a baby before or during birth. Crying babies in postpartum units may distress parents; conversely moving a parent to a different ward, or to an isolated


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room, may also cause distress due to confusion among the other wards’ staff as well as being around patients and staff who do not know or understand what the parents have been through.

Meta-synthesis 4; Immediately post-birth: A number of factors exist around parental decision making regarding whether or not to see and or hold their stillborn baby and how meeting or not meeting the baby is experienced and remembered. Personal preferences, being prepared and having tangible memorabilia are important elements.

This meta-synthesis is created from 55 findings formed into 13 categories (Figure 4). Thirty four findings informing this meta-synthesis were classed as ‘unequivocal’ and 21 findings were classed as ‘credible’. Within this meta-synthesis, a number of findings have been included in two or more categories (Figure 4). This synthesised finding highlights a number of factors that influence and relate to parents’ experiences of the interventions and strategies that health care professionals may or may not engage them in immediately following the birth of their stillborn baby.

Prominent elements of this synthesised finding are parents’ experiences regarding how health care professionals can play an important part in supporting parents to make decisions about whether or not to see and or hold their baby. While the personal preferences for both parents are pivotal regarding this choice, health care professional encouragement, guidance and support may be recalled favourably by parents that were initially fearful or unwilling to see their baby. Parents may be appreciative of being provided with helpful and caring information around what to expect when making decisions about whether or not to see and hold their baby. The decision whether or not to see the baby may arise from concerns regarding potential feelings of regret or guilt in the future. Both parents who saw or did not see their baby recognised the importance of receiving sensitive communication from health care professionals that respected their wishes, however parents did reflect that while they did not initially wish to see or hold their baby, the health care professionals’ insistence and guidance had persuaded them and for that they were glad. Seeing the stillborn infant as well as being able to collect tangible memorabilia, especially photographs may help parents validate their emotions and may provide important physical evidence of their baby’s existence and death, which can be experienced as valuable.

One category made up of findings from fathers illustrates that some hospital systems and protocols around meeting and parting from their baby could cause distress. Other systems around the collection of tangible memorabilia can be positive. One category made up of findings from the perspective of mothers that saw their children highlighted that no amount of time is enough and that having the gentle support of health care professionals of various actions, such as dressing and bathing that they wished to do with their baby was appreciated.


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FIGURE 5: METASYNTHESIS OF FINDINGS RELEVANT TO THE PERIOD IMMEDIATELY POST BIRTH OF THE STILLBORN BABY


[Deciding not to see the stillborn baby: not seeing is to avoid guilt and suffering] Most mothers worried that they were responsible for their babies deaths, and they felt guilty. They feared that seeing their babies would create more guilt, and thus, chose not to see them. (Sun et al., 2013) (U)

Meeting with the stillborn: Siblings of all ages experienced the stillborn brother or sister as lifelike by seeing, holding, and touching the baby. (Avelin and Erlandsson, 2011) (U)

[Role of the health professionals] They did not rush us, they answered questions and educated us about our baby…The nurses in the delivery room were fantastic...This I feel was critical to helping us accept the situation and our child. (O'Neill, 1999) (U)

[Support in Meeting with and Separating from the Baby] The encounter was strongly influenced by what the parents did with their baby when he or she was still in the delivery room. How the situation will be experienced and recollected depended on the caregivers’ basic management knowledge… (Säflund et al., 2004) (U)

[Clinician empathy and rituals to honor a baby’s death are important to parents: “They encouraged us to take pictures—I’m glad we did”] (Kelley and Trinidad, 2012) (U)

(P)ositive accounts of the hospital experience included thoughtful gestures of compassion and support, such as giving parents time to hold their baby, offering to


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photograph their child, and offering to bathe and dress the child. (Kelley and Trinidad, 2012) (U)

All women were glad about what they had done with the baby after the birth. Four regretted that they had not done more, as encouraged by the staff. In retrospect, all women thought that health care staff should encourage parents to spend as much time as possible with their baby while in hospital, and they stressed the importance of using this time. …All women said it was vital to inform parents both orally and in writing. They emphasized that the information must be absolutely clear, because parents have only a few days in which to receive their baby and say goodbye, while gathering as many memories as possible. (Trulsson and Radestad, 2004) (C)

Saying goodbye: Good communication is essential in order for the midwife to be sure of how parents feel about handling the baby at this time. ( Dyson and While, 2008) (C)

[The stillbirth and aftercare] Concrete items were found to be invaluable… They maintained that photos and hand and footprints should always be secured, even if the parents should decline. ( Samuelsson et al., 2001) (U)

[The stillbirth and aftercare] The fathers approached the baby with respect and dignity, and a certain fear of seeing their child…(P)ersuasion and assistance was needed at times… (Samuelsson et al., 2001) (U)

[Support in Chaos] “(S)upport in chaos” includes structured information and


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help in relieving despair. (C)aregivers had an important role to play, and could both relieve their despair or worsen it…(I)f the staff assisted them during this time, the parents thought that their attachment to the baby was strengthened. (Säflund et al., 2004) (U)

The extent of health care professional support with decision making regarding whether or not to meet their stillborn baby depends on the personal preferences and needs of parents.

[Support in Chaos] “(S)upport in chaos” includes structured information and help in relieving despair. (P)arents wanted structured information about meeting their baby, they sometimes received more information than they could absorb. (Säflund et al., 2004) (U)

Parents’ needs: making those irretrievable moments precious: Good memories were also formed by regular and individualised updates and information as the pregnancy and labour progressed, if the death of the baby was known about before the birth; as much time as possible for parents to make decisions. (Corbet-Owen, 2001), (C)

[The delivery] When the baby was born, the women experienced total silence. For a few this was expected, but for most it came as a shock. Some women approached their baby in a straightforward manner, whereas others found it difficult. All women said the actions of staff were important in helping them dare to look at the baby. They felt they needed guidance in how to approach the baby to make everything as good as possible. (Trulsson and Rådestad, 2004) (U)

[Support in Meeting with and Separating from the Baby] The time they spent with their dead baby seemed to be more important in qualitative terms than in relative terms.


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Regardless of how many hours the parents spent with their child, the amount of time was always too short for them. (Säflund et al., 2004) (U)

Saying goodbye: Good communication is essential in order for the midwife to be sure of how parents feel about handling the baby at this time. (Dyson and While, 2008) (C)

Parents’ needs: making those irretrievable moments precious: Mothers recounted a desire to hold the baby, although from person to person, there were varying preferences for the timing of this. This is an area where some parents felt that healthcare staff could be more assertive. (Downe et al., 2013) (C)

Supporting the needs and preferences of patients as individuals in meeting their stillborn baby. Parents may have individual or shared

Saying goodbye: Good communication is essential in order for the midwife to be sure of how parents feel about handling the baby at this time. (Dyson and While, 2008) (C)

[Deciding not to see the stillborn baby: Not seeing is to pretend event closure] After the stillbirth, some mothers chose to escape and block out all issues regarding the stillborn infant. (Sun, 2013) (U)

Saying goodbye: Parents differed in the way in which they wanted to physically ‘part’ with their baby for the first time. (Dyson and While, 2008) (C)

[Clinician empathy and rituals to honor a baby’s death are important to parents: “They encouraged us to take pictures—I’m glad we did”] (T)he importance of considering the needs of both parents, as a couple and as individuals… (Kelley and Trinidad, 2012) (U)

I wish that I had seen her completely naked. That may sound strange or perverse, but I wanted to know all of her,


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every inch, every detail of this life we created. (Weaver-Hightower, 2012) (U)

preferences.

After her delivery, the nurses and doctor whisked Matilda away, cleaned her body, and dressed her (a common death ritual in many cultures). When the nurses returned her to our hospital room, we were frightened. Simultaneously, though, an almost tidal pull drew me to see my daughter. She was our first baby, so my wife and I had found it endlessly fascinating imagining what she would look like, what our genetic material concocted. (Weaver-Hightower, 2012) (U)

Meeting with the stillborn: Siblings of all ages experienced the stillborn brother or sister as lifelike by seeing, holding, and touching the baby. (Avelin and Erlandsson, 2011) (U)

Her body was not disgusting, as we feared, but instead miraculous, strange and wonderful. Seeing and holding her brought both intense pain and great joy at once. ( Weaver-Hightower, 2012) (U)

Preparing parents to meet their stillborn baby if they choose to: giving helpful information and time to understand.

[Deciding to see the stillborn baby: Seeing is a shock] Seeing their stillborn babies forced parents to deal with the pain of reconciling the real and imagined appearance, size, and skin color of their infants. The infant’s appearance profoundly impacted the parents and some had negative reactions, especially parents who had little, if any, prior psychological preparation. (Sun et al., 2013) ( U)

[Deciding not to see the stillborn baby: not seeing as preventing memory imprinting] Some parents were afraid that their babies could be abnormal, emaciated, or deformed; thus, they chose not to see them to avoid bad memories. (Sun et al, 2013) (U)


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[Immediately after birth] (I)nitially reluctant to see their babies because they knew they would not look normal. (Lee, 2012) (U)

[Broken expectations] (M)others realized afterwards that they could have brought clothes and other items for the…baby and wished that someone had told them about this. (Malm et al., 2011) (U)

[Raising a child who does not exist in real life: Proof of the birth of the child] A woman who initially thought that she could “pretend it did not happen” said that unless she accepted the fact that the baby had been born, she could not move on from the loss. One woman who refused to see the baby at birth now cherishes the proof that her baby existed, though not long, in this world. (Yamazaki, 2010) (U)

Seeing the stillborn baby is validation and evidence of their baby’s birth, existence and death. Not seeing may cause regret for some people.

[Deciding to see the stillborn baby: seeing is imprinting the stillborn infant in one’s memory] Seeing the infant validated his or her existence, providing a meaningful image that enabled the parent to maintain memories of the baby. (Sun et al., 2013) (C)

[Deciding to see the stillborn baby: Seeing is believing] The parents seldom thought about witnessing their child’s death, let alone accepting it, which was a totally unimaginable situation. Some parents decided to see their stillborn infant to confirm the death. Seeing their stillborn infant was parent’s opportunity to come to terms with the infant’s death and validate the baby’s status, thus achieving a certain degree of reassurance through the visual experience. (Sun, et al. 2013) (U)

Parents’ needs: making those irretrievable moments


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precious: The quality of memories was the anchor point for a good or a bad experience, with long-term and, often, unexpected consequences. Ensuring good memories and the collection of meaningful physical mementos was one of the most important things staff could do to help parents to deal with their situation. (Downe et al., 2013) (C)

[Immediately after birth] Quite specific regrets. (Lee, 2012) (U)

[Accepting the reality of altered fatherhood] One father, who did not see or hold his child, was having difficulty 5 years after the stillbirth in identifying himself as a father with respect to his child. He was still struggling with acknowledging the child’s reality, as he had never seen the child, and was also still struggling for recognition as a father by others. (Worth, 1997) (C)

[Deciding not to see the stillborn baby: Not seeing is to pretend event closure] After the stillbirth, some mothers chose to escape and block out all issues regarding the stillborn infant. (Sun et al., 2013) (U)

[Clinician empathy and rituals to honor a baby’s death are important to parents: “They encouraged us to take pictures—I’m glad we did”] (G)estures that two parents found to be meaningful and supportive…(Kelley and Trinidad, 2012) (U)

[The stillbirth and aftercare] Concrete items were found to be invaluable… They maintained that photos and hand and footprints should always be secured, even if the parents should decline. (Samuelsson et al 2001) (U)


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[Clinician empathy and rituals to honor a baby’s death are important to parents: “They encouraged us to take pictures—I’m glad we did”] (Kelley and Trinidad, 2012) (C)

Memorabilia is valuable: Tangible evidence is

[Raising a child who does not exist in real life: Proof of the birth of the child] Some hospitals provide photographs, as well as the umbilical cord and footprints, of the stillborn baby, which are cherished by the women as proof of the birth of their child. (Yamazaki, 2010) (C)

[Memorials] (H)ospitals…providing ‘memory boxes’ containing photographs and mementoes, which were received with gratitude, even by those who felt unable to look at them. (Lee, 2012) (U)

For the parents of stillborn babies, things perform a critical role. Things function as the tangible, earthly connections these parents have with their babies, a means of creating memories of and social identities for their children since the corporeal child no longer exists and often goes socially unrecognized. (Weaver-Hightower, 2012) (U)

[Maintaining memories] Maintaining memories was important, as life would go on, but the fathers did not want to forget their child. Tangible memories included pictures of the child, a lock of hair, wrist bands, and cot cards. (Worth, 1997) (C)

Helpful things: Photographs and various keepsakes such as locks of hair, wristbands, hand and footprints were always viewed as helpful. ( Dyson & While, 2008) (C)

[Understanding the Nature of Grief] “(U)nderstanding the nature of grief” includes facing the


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grief and the essence of the sorrow never ends. (T)o see and to hold the baby and to have tokens of remembrance and a photo would help them to understand what really happened and what they were grieving for. (Säflund et al., 2004) (U)

helpful and received with gratitude. A number of factors exist around parental decision making regarding whether or not to see and or hold their stillborn baby and how meeting or not meeting the baby is experienced and remembered. Personal preferences, being prepared and having tangible memorabilia are important elements.

[Clinician empathy and rituals to honor a baby’s death are important to parents: “They encouraged us to take pictures—I’m glad we did”] (Kelley and Trinidad, 2012) (U)

(P)ositive accounts of the hospital experience included thoughtful gestures of compassion and support, such as giving parents time to hold their baby, offering to photograph their child, and offering to bathe and dress the child. (Kelley and Trinidad, 2012) (U)

All women were glad about what they had done with the baby after the birth. Four regretted that they had not done more, as encouraged by the staff. In retrospect, all women thought that health care staff should encourage parents to spend as much time as possible with their baby while in hospital, and they stressed the importance of using this time. …All women said it was vital to inform parents both orally and in writing. They emphasized that the information must be absolutely clear, because parents have only a few days in which to receive their baby and say goodbye, while gathering as many memories as possible. (Trulsson and Rådestad, 2004) (C)

Parents’ needs: making those irretrievable moments precious: The quality of memories was the anchor point for a good or a bad experience, with long-term and, often,


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unexpected consequences. Ensuring good memories and the collection of meaningful physical mementos was one of the most important things staff could do to help parents to deal with their situation.(Downe et al., 2013) (C)

[Deciding to see the stillborn baby: Seeing is to avoid regret] Some parents said they would regret it if they lost this chance to see their stillborn infant. (Sun et al., 2013) (U)

The choice to see or not see the baby may be to avoid unwanted and distressing emotions.

[Deciding not to see the stillborn baby: not seeing is to avoid guilt and suffering] Most mothers worried that they were responsible for their babies deaths, and they felt guilty. They feared that seeing their babies would create more guilt, and thus, chose not to see them. (Sun et al., 2013) (U)

[Accepting the reality of altered fatherhood] One father, who did not see or hold his child, was having difficulty 5 years after the stillbirth in identifying himself as a father with respect to his child. He was still struggling with acknowledging the child’s reality, as he had never seen the child, and was also still struggling for recognition as a father by others. (Worth, 1997) (C)

[Immediately after birth] Quite specific regrets. (Lee, 2012) (U)

Fathering a stillborn baby and the ongoing relationship: The time post-stillbirth was a critical phase in the men’s experiences. They each spent numerous hours with their stillborn child, holding, bathing, talking to and touching, often visiting them over several days. The holding of their baby allowed the fathers to realize that baby was their child and various rituals, such as talking, bathing, playing, touching and photographing their baby were significant in


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allowing the men to reconcile the stillbirth experience with their fathering identity. (Bonnette and Broom, 2011) (U)

Evidence and acknowledgement of the reality of the reality of the experience of losing your baby.

[Acknowledging the child’s reality / acknowledging the loss] The child’s reality was discerned through watching the birth and then seeing and holding the child. ….Seeing and holding the child allowed the fathers to realize not only that this was a child but that this was their child. Seeing the child helped the fathers to acknowledge the reality of the child and to realize that their child was not alive. (Worth, 1997) ( U )

[Deciding to see the stillborn baby: seeing is an opportunity to say farewell] Seeing was to bear witness to the infant’s death and was the parent’s only opportunity to bid sad farewell to their baby. (Sun et al., 2013) (C)

When the nurses laid her in my arms, I knew I held not a “body,” not a “corpse.” It was her. It was all I will ever know of her. Just those few hours. Just that body. (Weaver-Hightower, 2012) (C)

[Accepting the reality of altered fatherhood] (Worth, 1997) (C)

[Understanding the Nature of Grief] “(U)nderstanding the nature of grief” includes facing the grief and the essence of the sorrow never ends. (T)o see and to hold the baby and to have tokens of remembrance and a photo would help them to understand what really happened and what they were grieving for. (Säflund et al., 2004) (U)

[Fathers’ reports on hospital staff] (H)aphazard approach to burial arrangements adopted by some hospital staff may add to the feelings of isolation and

Hospital systems and protocols around seeing, recognising holding and saying goodbye to the


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distress expressed by the fathers. (Malm et al., 2011) (U) stillborn baby can impact positively or negatively. [The stillbirth and aftercare]

Concrete items were found to be invaluable… They maintained that photos and hand and footprints should always be secured, even if the parents should decline. (Samuelsson et al. 2001) (U)

[Raising a child who does not exist in real life: Proof of the birth of the child] Some hospitals provide photographs, as well as the umbilical cord and footprints, of the stillborn baby, which are cherished by the women as proof of the birth of their child. (Yamazaki, 2010) (C)

[Memorials] (H)ospitals…providing ‘memory boxes’ containing photographs and mementoes, which were received with gratitude, even by those who felt unable to look at them. (Lee, 2012) (U)

[Immediately after birth] (H)ealth care providers looked after the baby… (Lee, 2012) (U)

Respect for the baby by health care professionals.

[Immediately after birth] (T)he way in which they and the stillborn baby were treated immediately after the birth. All had the choice to see, hold, bathe and dress their baby. (Lee, 2012) (U)

Parents’ needs: making those irretrievable moments precious: respectful handling of the baby once it was born (Downe et al., 2013) (C)

Saying goodbye: Midwifery staff need to be particularly sensitive to the mother’s needs during this time. (Dyson and While, 2008) (C)

Sensitivity and compassion from health care professionals to support meeting and parting from their baby.


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[Clinician empathy and rituals to honor a baby’s death are important to parents: “They encouraged us to take pictures—I’m glad we did”] (G)estures that two parents found to be meaningful and supportive… (Kelley and Trinidad, 2012) (U)

[Clinician empathy and rituals to honor a baby’s death are important to parents: “They encouraged us to take pictures—I’m glad we did”] Not all parents found providers’ well intentioned gestures, or their timing, comforting. Others appreciated the gestures only much later. (Kelley and Trinidad, 2012) (U)

Guiding or taking the lead in supporting parents to see their stillborn baby.

[The stillbirth and aftercare] The fathers approached the baby with respect and dignity, and a certain fear of seeing their child…(P)ersuasion and assistance was needed at times…( Samuelsson et al., 2001) (U)

[Support in Chaos] “(S)upport in chaos” includes structured information and help in relieving despair. (C)aregivers had an important role to play, and could both relieve their despair or worsen it…(I)f the staff assisted them during this time, the parents thought that their attachment to the baby was strengthened. (Säflund et al., 2004) (U)

Parents’ needs: making those irretrievable moments precious: Mothers recounted a desire to hold the baby, although from person to person, there were varying preferences for the timing of this. This is an area where some parents felt that healthcare staff could be more assertive. (Downe et al., 2013) (C)

[Clinician empathy and rituals to honor a baby’s death are


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important to parents: “They encouraged us to take pictures—I’m glad we did”] (G)estures that two parents found to be meaningful and supportive… (Kelley and Trinidad, 2012) (U)

[Support in Chaos] “(S)upport in chaos” includes structured information and help in relieving despair. (P)arents wanted structured information about meeting their baby, they sometimes received more information than they could absorb. (Säflund et al., 2004) (U)

Structured, well-timed information from health care professionals helps parents to make decisions regarding seeing and spending time with their baby.

Parents’ needs: making those irretrievable moments precious: Good memories were also formed by regular and individualised updates and information as the pregnancy and labour progressed, if the death of the baby was known about before the birth; as much time as possible for parents to make decisions. (Downe, Schmidt & Kingdon 2013) (C)

[The delivery] When the baby was born, the women experienced total silence. For a few this was expected, but for most it came as a shock. Some women approached their baby in a straightforward manner, whereas others found it difficult. All women said the actions of staff were important in helping them dare to look at the baby. They felt they needed guidance in how to approach the baby to make everything as good as possible.(Trulsson and Rådestad, 2004) (U)

[Broken expectations] (M)others realized afterwards that they could have brought clothes and other items for the…baby and wished that someone had told them about this. (Malm et al., 2011) (U)


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[Support in Meeting with and Separating from the Baby]The time they spent with their dead baby seemed to be more important in qualitative terms than in relative terms. Regardless of how many hours the parents spent with their child, the amount of time was always too short for them. (Säflund et al., 2004) (U)

Never enough time with the baby.

Saying goodbye: The mother’s regrets usually concerned not having spent enough time with their babies. Other regrets related to this were that they had not ‘explored’ the baby. (Dyson and While, 2008) (U)


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Discussion of meta-synthesis 4; Immediately post-birth

The findings in this review indicate that healthcare professionals can play an important part after the birth in supporting parents to make the best decisions for themselves as individuals and as a couple in regard to whether or not to see and hold their baby. The findings of this synthesis have demonstrated that parents often appreciated health care professionals’ guiding or taking the lead in supporting parents to see their stillborn baby. At all times, sensitivity, respect and consideration for parents’ feelings and preferences is critical to ensure that parents feel supported, respected and validated.

Many parents may recollect seeing their stillborn baby as being meaningful because of its importance as an action of validating their parenthood and creating visual evidence of their baby’s birth, existence and death. A number of findings indicated that parents who did not see or hold their baby or have any tangible tokens of remembrance had trouble coming to terms with their grief because of the absence of any clear memories or evidence of their parenthood. Some parents who did not see their baby express regret and refer to not having witnessed the evidence of their baby’s existence and death firsthand. Parents, and often fathers, expressed feelings that seeing and holding their baby helped them to understand and come to terms with the event better. For such parents, seeing and holding the baby was an action of affirming that the infant was emphatically their baby and was a confirmation of their identity as a mother or father.

Parents may choose to see their stillborn baby in order to avoid feelings of future regret at not doing so. Conversely, other parents may decide not to see their stillborn baby because of worries that seeing the baby may cause feelings of guilt and suffering. Some parents that do not see their baby may struggle with issues even years later, others that did see their baby express emphatic gratitude that they chose to. Parents may also have very specific regrets around not having done specific activities with their baby while they could or spending as much time as they would have liked with the baby.

The findings show that many parents desire to collect and retain tangible items such as locks of hair, wristbands, hand and footprints and especially photographs of their baby. Parents may not be aware that the collection of such items is allowed by the hospital or socially acceptable. Some parents worry that health professionals will think poorly of them or refuse their desire to have photographs and other physical mementos. After the event, many parents express thankfulness when health care professionals encouraged and supported them to take pictures and gather tangible items.

Healthcare professionals should be aware that some parents may decline items but hospitals may be able to secure the items in case parents change their minds later. Some parents did not think that they wanted to keep any memorabilia at the time, however then expressed gratitude for having tangible things at a later date. Many findings included in this synthesis confirm that collecting physical mementos and photographs is an important aspect of having evidence of the stillborn baby’s existence and death. Tangible items are physical evidence of the birth and death of their baby. Keeping items can help parents understand what they are grieving for by reminding them that their baby did exist.

The amount and style of support that parents experience positively from health care professionals may be different for each individual. Some reported that they appreciated compassionate but structured, unrushed information while others recalled that they appreciated health professionals’ more insistent encouragement to hold and do other


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activities with their baby despite their fears. The findings demonstrate that some parents may recall that health care professionals took the lead and guided them to see and or spend time with their baby despite their own initial reservations. For some parents, this assertive approach, while not welcomed at the time, was recalled after the event with gratitude or understanding. While some parents may eventually approve of health care professionals’ insistence upon seeing their baby, this approach may not be appropriate for all parents and careful consideration of each individual and of the timing of providing suggestions and guidance is critical. Structured information should be provided to parents with time to allow them to process and understand it.

Some parents did not wish to see their baby, but still may appreciate making this decision with the clear guidance and information that can be provided by healthcare professionals to all parents. Not being rushed into making uninformed decisions around seeing the baby and also feeling supported in taking as much time as desired to be with the baby are commonly reported on as positive from many parents. Healthcare professionals can help prepare parents to make informed decisions as to whether or not to meet their stillborn baby and for what to expect if they decide to. Many parents reported receiving information regarding the possible physical condition of their baby so that they could prepare themselves. Parents’ fear of the unexpected or the possibly distressing appearance of their baby can cause apprehension for parents, and health care professionals can help parents understand what to expect. Some parents may be worried that their baby will be too damaged by the birth or alternatively not be aware that their baby may be physically injured. Information about the silence following a stillbirth can be valuable for parents .In any case, having accurate and sensitively delivered information is key.

Some findings also revealed that parents desire guidance and support from healthcare professionals with making decisions around allowing other family members, such as the infant’s siblings and grandparents to see the baby. This is because some parents may not realise that it is allowed by the hospital or considered appropriate by the staff to invite others to meet the baby.

Differences in preferences within and between parent couples were evident in the findings. Giving parents clear information and guidance that that supports their preferences as individuals and as a couple is important. Parents may have individual or shared preferences with regard to meeting their stillborn baby. Some parents may not share the same preferences as their partner and resultantly may not have their desires considered equally. Preferences may range from having differing desires to see or not to see their baby to more complex preferences that consider also the timing of when to see the baby, how often, as well as parenting activities such as bathing, dressing and exploring their baby. Good communication between health care professionals and parents can aid in ascertaining the particular preferences of parents and help healthcare professionals understand what parents need to be supported in doing.

A number of findings highlighted that parents feel that it is extremely important that health care professionals treated their stillborn infant with respect and tenderness. When infants were not treated with respect, especially around presenting them to their parents, parents can experience great shock and distress. Hospital systems that have poorly organised or insensitive processes or protocols around presenting the baby to the parents or around the treatment of the baby can cause distress for parents. Parents’ desire for their baby to be treated with the respect afforded to any living baby. Helpful hospital processes that are


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experienced positively are those which support parents in the collection, provision and potentially storage of tangible memorabilia.

In summary, the findings included here reveal that ultimately parents, and especially mothers, may feel that no amount of time is enough to spend with their baby. Some may wish to spend many hours with their baby, some over a period of days. Parents may wish to bathe and or dress the baby and explore the baby’s body. Health care professionals should be sensitive and supportive of this and may even provide guidance and approval which can be appreciated. Healthcare professionals should understand that parting from the baby may be hard for parents. It is also important that parents be informed that it is okay for them to spend time an extended amount of time with their baby, as some parents may feel that their desires will not be understood or valued by healthcare professionals.

Meta-synthesis 5; Post-birth and onwards: The continuing experience of stillbirth: the need for support and care does not end immediately

This meta-synthesis derives from 20 findings formed into 5 categories (Figure 5). Fifteen findings that were included to create this synthesis were classed as ‘unequivocal’ and five findings were classed as ‘credible’. This overall meta-synthesised finding highlights a number of factors that can impact upon parents’ experiences of the interventions and strategies that health care professionals may or may not engage in following the experience of stillbirth. Categories within this meta-synthesis and the findings that contribute to them relate to the period of time following on from giving birth to a stillborn infant but that do not specifically relate to strategies and interventions around meeting, seeing and holding the baby.

This meta-synthesised finding highlights that the information needs of mothers can carry on beyond the initial experience of stillbirth in the hospital that are informed by the meta-syntheses presented previously (Figures 2, 3, 4). After stillbirth, mothers can express information needs regarding referrals to further psychosocial support offered by psychologists, social workers and counsellors. Without this information support, mothers may feel abandoned and isolated. Mothers may also desire specific information, for example how to provide support to their other children if they have them as well as for information regarding engaging in physical activity to improve coping, manage depressive symptoms and improve emotional health.

Parents may experience distress and loneliness in the time after a stillbirth, both within the hospital setting and upon returning home. This can be augmented by hospital systems and protocols that are not sensitive and tailored to the experiences of parents following a stillbirth. For instance hospitals provide standard information for all parents upon leaving the hospital. Some parents may also be negatively affected by the timing of hospital protocols and practicalities following a stillbirth; while for some parents dealing with the practical necessities, such as funeral arrangements and registration of death immediately after stillbirth is acceptable and understandable, others may feel confronted and troubled if this is not done with sensitivity and compassion. Following a stillbirth, if staying in the hospital, the environmental issues surrounding parents’ preferences whether to be located near other mothers and babies can persist. Some mothers may wish to return to the room they were in prior to the birth, while others may prefer not to be nearby to other new mothers.

Following stillbirth, health care professionals should be aware that not all mothers feel the same about the received classification of stillbirth and can be considerate around this. One


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finding revealed that one mother would have preferred her stillbirth to be classified as a miscarriage; she felt alienated by the diagnosis of a stillbirth and the practical necessities such as arranging a funeral following stillbirth were isolating and undesirable (Lee 2012).

Positive experiences regarding hospital systems and protocols following stillbirth related to parents feeling appreciative and grateful when systems are in place that are attentive to their particular needs. Systems for the collection and provision of tangible items and photographs and certificates were felt to be valuable as was the provision of support services and referrals. Follow-up phone calls can also be experienced positively. Timing and content of follow-up care should take into account parents’ unique needs and preferences; while some may desire immediate referrals and support and meetings with their health care professional team, others may not wish to access supportive services for some time.

For some women, the reality of stillbirth continues on long after the pregnancy and mothers may have concerns and experience apprehension regarding subsequent pregnancies. The results of some studies indicated that health care professionals should/need to understand that mothers may desire continuity of care with the same staff for their next pregnancy and that this may enhance mothers’ feelings of security and ease worry. Continuity of care can also help parents to avoid the need to repeat their story to successive care-providers. Mothers may desire special antenatal care in the lead up to their subsequent pregnancy and can be particularly apprehensive at the corresponding time to when their previous stillbirth was diagnosed. Health care professionals have the ability to help women prepare for a subsequent pregnancy and be there for women to provide honest, attentive and understanding information and support.


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FIGURE 6: META-SYNTHESIS OF FINDINGS RELEVANT TO THE PERIOD POST BIRTH OF THE STILLBORN BABY AND ONWARDS


Health care providers are not providing information (e.g., exercise prescription, programming) relative to physical activity for women who have experienced loss. (Huberty et al., 2014) (U)

The needs of mothers may continue beyond the initial health care context. Information provided by health care professionals can support mothers into the future.

Caring and guidance as a basis: when professionals did not give enough support and information about the needs of siblings, parents felt abandoned. (Avelin and Erlandsson, 2011) (U)

[Information and decision-making] (S)upport offered by psychologists, counsellors, social workers. (Lee, 2012) (U)

[Grief following stillbirth is ambiguous: “My saddest memories are also the ones I cherish”] Information and materials were typically offered by nurses or social workers. Only a few mothers in these groups were given referrals for counselling; most sought counselling or treatment on their own. (Kelley and Trinidad, 2012) (C)


Differing preferences and experiences of the timing of practicalities and support.

[Dealing with practicalities] As with any death, dealing with practicalities had to be addressed. The first practicality to be dealt with was stillbirth registration and autopsy forms. The fathers reacted differently to these issues. (Worth, 1997) (C)

[Grief following stillbirth is ambiguous: “My saddest memories are also the ones I cherish”]


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Parents had different needs: some wished for immediate social support, while others felt unable to talk about their experience for some time. (Kelley and Trinidad, 2012) (C)

[At the hospital] We were moved back to the same room from the previous day. I appreciated this because I felt comfortable in it. (O’Neill, 1999) (U)

[Living with the reality of the loss: Life without the child] Whether the women left the hospital immediately after the delivery, stayed another week just as in a normal childbirth, or even received good care from the maternity ward staff, they all had to face the various realities of the fetal loss. They were living with the loss of their child immediately after suddenly being told of the fetal death. (Yamazaki, 2010) (C)

Health care protocols and processes may be experienced differently by parents. Sensitivity to individual preferences following birth could be amenable to these differing preferences.

(Lack of) Care in the caring: practices that disrupted or damaged the recovery of parents. (Downe et al., 2013) (U)

[Dealing with practicalities] As with any death, dealing with practicalities had to be addressed. The first practicality to be dealt with was stillbirth registration and autopsy forms. The fathers reacted differently to these issues. (Worth, 1997) (C)

[At the hospital] We were moved back to the same room from the previous day. I appreciated this because I felt comfortable in it. (O’Neill, 1999) (U)


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[The system] [ambiguities and definitional issues] … (P)referred her pregnancy outcome to be classified as a miscarriage…to have avoided the birth certificate and death certificate that brought comfort to others but alienated her. (Lee, 2012) (U)

The continuing experience of stillbirth: the need for support and

care does not end immediately

[Subsequent pregnancies] (Dyson and While, 2008) (U) The reality of stillbirth may continue long after the pregnancy. Subsequent pregnancies may be concerning for mothers as they can be worried about another stillbirth. Information and support from health professionals can help mothers approaching and during their next pregnancy.

[Subsequent pregnancies] The mothers identified the corresponding time at which the baby had died as the most difficult time in their subsequent pregnancies. They expressed a need for professionals to be aware of their bereavement and to provide them with support during this time. (Dyson and While, 2008) (U)

[Subsequent pregnancies]: [Women] viewed their postnatal experiences as being an important part of the whole experience of stillbirth. During pregnancy, labour and also in the postnatal period women repeatedly expressed fears that their baby was going to die. (Dyson and While, 2008) (U)

[Subsequent pregnancies] All the ‘helpful things’ mothers talked about in relation to subsequent pregnancies concerned support, e.g. support from groups such as that run by the hospital or the Stillbirth and Neonatal Death Society – midwives were said to be an invaluable source of support. Midwives were appreciated for gently approaching the subject, being prepared to talk about it and also for being honest and not giving false assurance. (Dyson and While, 2008) (U)

[Organization of the Care] “(O)rganization of the care”


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includes care option facilities. (T)he option to meet the same caregivers in a subsequent pregnancy seemed to increase the parents’ sense of security. (Säflund et al., 2004) (U)

[Organization of the Care] “(O)rganization of the care” includes care option facilities. The caregivers’ help with understanding the grieving process… (A)nd the offer of special antenatal care for the next pregnancy had eased their despair. (Säflund et al., 2004) (U)

[Support in Bereavement] “(S)upport in bereavement” includes support by caregivers and laypersons. To meet the physician and the midwife involved even after the stillbirth and again to have the opportunity to talk about the event seemed to be beneficial for the grieving process according to the parents. (Säflund et al. 2004) (U)

Follow-up and continued contact with health care professionals.


[Grief following stillbirth is ambiguous: “My saddest memories are also the ones I cherish”] Information and materials were typically offered by nurses or social workers. Only a few mothers in these groups were given referrals for counselling; most sought counselling or treatment on their own. (Kelley and Trinidad, 2012) (C)

[Organization of the Care] “(O)rganization of the care” includes care option facilities. (T)he option to meet the same caregivers in a subsequent pregnancy seemed to increase the parents’ sense of security. (Säflund et al., 2004) (U)


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[Organization of the Care] “(O)rganization of the care” includes care option facilities. The caregivers’ help with understanding the grieving process… (A)nd the offer of special antenatal care for the next pregnancy had eased their despair. (Säflund et al., 2004) (U)

[Back home] I appreciated the nurse visiting and checking up on my wife… (B)ut I felt the nurse was there for my wife and not for me. (O’Neill, 1999) (U)


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Discussion of meta-synthesis 5; Post birth and onwards

The findings of this review demonstrate that beyond the birth of the stillborn baby and into the future, information regarding emotional, psychological and practical issues should be offered by health care professionals. Psychologists, counsellors, support groups, social workers and members of clergy may be well placed to provide ongoing support to parents who have experienced stillbirth. Referrals for professional support may be appreciated by parents as some may experience feelings of isolation and abandonment upon returning home. Support for mothers may include information regarding the possible needs of siblings, information and help with practical arrangements such as a funeral. The findings indicate that fathers often deal with the practicalities following stillbirth; though individuals may have differing preferences regarding the timing of dealing with these practical factors following stillbirth; for example stillbirth registration and autopsy forms. Some fathers may find the timing of procedural necessities acceptable while others may feel rushed and that their emotional state has not been appropriately considered by healthcare professionals.

The lack of sensitive, appropriate and organised processes for parents following stillbirth may be distressing to parents. Helpful processes may include defined procedures for the collection of memorabilia for parents as well as activities to celebrate the existence of their baby such as offering parents a birth certificate or other items of commemorative significance. Some parents may not have the same preferences as others and healthcare professionals should recognise that hospital processes and protocols that are experienced positively by some may not be by others. Hospital systems and processes could, where possible be amenable to the differing preferences of parents; some may wish to return home immediately following the stillbirth, while others may wish to remain within the birthing ward or in another part of the hospital. Unhelpful systems and processes may be so due to a haphazard and uncaring approach which can be distressing to parents.

An important consideration for healthcare professionals should be that the experience of stillbirth does not tend to end neatly and can have a lasting impact upon parents, often extending for many years. The findings demonstrate that healthcare professionals may be well-placed to provide support for mothers both leading up to and during a subsequent pregnancy. Offers of special antenatal care, quality midwifery support and continuity of care may be beneficial. Some mothers may prefer the same health care professionals for the next pregnancy who are familiar with the mothers’ history as an appreciation of the possibility that mothers may require particular support at the corresponding time their baby had died during the previous pregnancy. Meeting with the health care professionals who were involved in the birth of the stillborn baby after the stillbirth may be beneficial for the grieving process for some parents as findings suggest that parents may want to know about what might have caused the stillbirth and how they can prevent it from happening again. The ongoing support and inclusion of both parents in any follow up care may be necessary.

Huberty et al. (2014) highlight that little is known about how women who have experienced stillbirth feel about physical activity or use physical activity following this experience despite strong evidence for improvements in depressive symptoms as a result of physical activity participation in pregnant and post-partum women (Huberty et al. 2014). Huberty et al. (2014) explored women’s beliefs about physical activity following stillbirth using qualitative interviews and found that health care professionals could play a greater role in providing information regarding physical activity participation for women who have experienced stillbirth (Huberty et al. 2014). The study concludes that beyond what is currently offered by health care professionals after stillbirth, information support around physical activity may


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offer mothers a valuable means for the daily self-management of grief and loss improving health for subsequent pregnancies and improving general quality of life long-term.

Some parents may desire immediate social support to share their experiences with healthcare professionals, support groups, social workers or counsellors. Others may not wish to speak about the stillbirth for some time. These differing preferences should be considered with regard to providing options and information for parents to access support if and when they desire it.


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Review question 3: What is the appropriateness of interventions and strategies aimed at improving the psychological well-being of families who have experienced stillbirth?

Eight studies were identified that were directly relevant to the phenomenon of interest stipulated for this question posed by this review during the study selection process. Two studies included in this section were not included to inform the results for Review Question 2 (Hsu et al., 2002; Hsu et al., 2004). Of the eight included studies various designs including phenomenology, ethnography and grounded theory were represented; a number of studies did not state that researchers used a specific qualitative methodology (see Table 2).

Categorisation and synthesis of findings

From the eight studies that were included directly relevant to this review question, 12 findings were extracted. The findings and supporting illustrations for each appear in Appendix VI. It is worth noting that none of the included studies set out to directly investigate the phenomenon of cultural appropriateness of the interventions and strategies used by health care professionals, as a result, nine of the 12 included findings were extracted from the ‘discussion’ or ‘implications for practice’ sections of these papers that arose from the researchers’ investigation. In this respect, these findings or conclusions do not represent author themes or metaphors that have been characteristically extracted in other meta-syntheses presented in response to Question 2 of this review. A total of four categories were created on the basis of similarities in meaning; from these four categories, one synthesised finding (meta-synthesis) was produced.

Meta-synthesis 6: Culturally appropriate care acknowledges the cultural system of parents however also understands that parents have their own unique preferences that may not adhere to cultural norms. Spiritual and religious beliefs may impact upon parents’ experiences and understanding of stillbirth and health care professionals can help parents access religious or spiritual support while in their care.

This meta-synthesis derives from 12 findings formed into four categories (Figure 9). Three findings were classed as ‘unequivocal’ and nine findings were classed as ‘credible’. This synthesised finding highlights a number of factors that influence and relate to the cultural appropriateness of care following stillbirth.

Prominent elements of this synthesised finding are that culturally appropriate for parents and families experiencing stillbirth care can be offered by health care professionals care. For cultural groups that have particular taboos around interaction with death and dying, some consideration may be needed on the part of the health professional especially around decisions to see and or hold the baby. Parents however may have their own preferences that do not adhere to cultural norms and this should be accommodated. Parents’ culture may also affect their understanding of the position that the baby occupies in their spiritual or religious system and effective communication between health care professionals and parents after stillbirth may benefit from an appreciation of this. Furthermore, religious ceremony and ritual may be important for some parents at the time of stillbirth and health care professionals may be able to assist parents in accessing their chosen religious or spiritual figures while in their care.


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FIGURE 7: META-SYNTHESIS OF FINDINGS RELEVANT TO THE CULTURAL APPROPRIATENESS OF CARE PROVIDED TO FAMILIES WHO HAVE EXPERIENCED STILLBIRTH


[Hospital support in the loss experience: Additional Hospital Support] The final theme was additional hospital support services. (Sanchez, 2001) (U)

Access to the chosen source of spiritual or religious support.

Culturally appropriate care acknowledges the cultural system of parents however also understands that parents have their own unique preferences that may not adhere to cultural norms. Spiritual and religious beliefs may impact upon parents’ experiences and understanding of stillbirth and health care professionals can help parents access religious or spiritual support while in their care.

[Deciding not to see the stillborn baby: Not seeing is cutting the attachment to the stillborn baby] Stillbirth is a paradox of facing the job of life and then unexpectedly being struck by the sadness of death. Under this circumstance, some parents chose to avoid or isolate the event of stillbirth to follow their cultural taboo of not seeing their babies. Some parents chose not to see their stillborn babies because they were fearful of greater emotional attachments to their infants and less willingness to let go after seeing them. (Sun et al., 2013) (C)

Culturally based taboos and personal preferences guide parents’ decisions to see or not see their stillborn baby.

We recommend that clinical care personnel accommodate parents’ choices and cultural customs at an appropriate time and place. Health professionals should orient parents to the circumstances and assist in the additional decisions parents may face in advance of the stillbirth. Parents should have sufficient time and information to consider the implications of seeing or not seeing their stillborn infant, express their feelings, share their experiences, and discuss what to do following the stillbirth. (Sun et al., 2013) (C)

[Deciding not to see the stillborn baby: Not seeing as the act of following the cultural taboo] In Taiwanese culture, stillborn infants have no funerals or


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religious ceremonies. Buddhists and Taoists believe that this will allow the spirit to reincarnate, rather than “lingering as a lonely ghost.” Parents feared violating this taboo would affect the survivors and the dead, so they chose not to see their stillborn babies. (Sun et al., 2013) (U)

[Raising a child who does not exist in real life] Compared with their counterparts in Western countries, Japanese mothers tend to nurture the sense of oneness with their child rather than respect the child’s independence….they have an instilled mindset of not quite accepting the separation by death with an important person as an absolute separation. When a fetus dies in the uterus, however, he or she has no entry in the family register. For this reason, the degree or scale of mourning is influenced by the customs of the region and the intentions of family and relatives. There are specific ways to build the relationship with the lost child [and] some women experienced the process of raising the lost child in real life. (Yamazaki, 2010) (U)

Culturally mediated understandings of the family system can structure parents’ experiences of loss.

(T)o provide appropriate care, nurses need to be sensitive to the ways in which personal values interact with culture, especially one that emphasizes family continuity and child-raising as core values and essential female responsibilities. (Hsu et al., 2004) (C)

In a patrilineal culture that emphasizes family continuity via fertile daughters-in-law, nurses need to be especially sympathetic to the shattered lives of bereaved mothers. (Hsu et al., 2004) (C)

Attempts to establish a sense of partnership between nurses and their patients may be of benefit to the mothers


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of stillborn children during the earliest stage of their searches for new meaning. (Hsu et al., 2013) (C)

(G)rief as a health issue as well as a process of socioculturally influenced adaptation…professional nurses need to understand the inner desire of these women for catharsis, and to learn how to initiate tactfully therapeutic relationships with hospitalized mothers. Mothers need to be encouraged, but not required, to talk about their babies, perhaps by name, in order to establish objects and personalities that can be mourned. (Hsu et al., 2013) (C)

Grief can be understood as socioculturally mediated.

An appropriate nursing care plan might emphasize psychological support for these women, their husbands and members of their immediate families. (Hsu et al., 2004) (C)

Making arrangements for a private, informal meeting may facilitate bonding among members of a bereaved woman’s family. (Hsu et al., 2004) (C)

Health care staff should be mindful of and overcome the stereotypical image of the male partner carrying the overwhelming responsibility or task of seeing the stillborn infant. (Sun et al., 2013) (C)


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Discussion of meta-synthesis 6; The cultural appropriateness of interventions and strategies

The findings of this review demonstrate that throughout the experience of stillbirth culturally appropriate care can be provided by health care professionals that acknowledges the cultural system of parents however also understands that parents have their own unique preferences that may not adhere to cultural norms. Culturally based taboos around death and personal preferences guide parents’ decisions to see or not see their stillborn baby and healthcare professionals should ensure that they clearly ascertain the parents’ preferences rather than assuming that parents will always follow the cultural norm. Parents should be afforded sufficient time and information to consider and discuss the implications of seeing or not seeing their stillborn baby.

Spiritual and religious beliefs may impact upon parents’ experiences and understanding of stillbirth and health care professionals can help parents access religious or spiritual support while in their care. For example, in Taiwanese culture, stillborn infants do not have funerals or religious ceremonies as Buddhist and Taoist people believe that this will allow the spirit to reincarnate. Culturally mediated understandings of the family system can structure parents’ experiences of loss; in Japanese culture, stillborn infants may not be entered into the family register and this can have implications for parents’ experience of grief. Health care professionals can provide appropriate and culturally sensitive care in ways in which personal values interact with culture.

The findings indicate that healthcare professionals should be aware of the particular family systems of the culture of the parents; parents in some cultures have significant culturally mediated responsibilities around family continuity. Healthcare professionals need to be understanding and sympathetic to the additional grief that this responsibility may add. This meta-synthesis is largely based upon “credible” findings with no illustrations provided by study participants; therefore the results should be interpreted with caution.


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DISCUSSION

This review has synthesised the available evidence surrounding the experiences with care, both positive and negative, and the appropriateness of care provided to families who have experienced stillbirth. Experiences of strategies and interventions that were revealed to be important included; sensitivity and compassion from healthcare professionals, the provision of clear and understandable information, support and guidance in decision making, consideration of timing, suitability of the hospital environment, inclusiveness of partners, validation of experiences, attending to personal preferences, provision of tangible memorabilia and maintaining, where possible, continuity of care. In most instances these strategies combined a range of individualised and compassionate interactions with parents with clear information delivered in accessible and step-by-step ways to both parents.

The synthesis of the qualitative evidence in this review reveals what may help or hinder the success of the interventions in reducing parents’ experience of distress, anxiety and grief throughout the experience of stillbirth. The debate around whether or not seeing and holding the stillborn infant should be recommended by healthcare professionals can be informed by the results of this review. Among the interventions and strategies considered this review located no findings to suggest that parents regretted seeing or holding their stillborn baby. Despite Hughes et al’s (2002) study reporting that seeing and holding a stillborn infant may have adverse consequences for some women, a number of the findings in this review suggest that even when parents were reticent or fearful about seeing their stillborn baby, in retrospect they appreciated that healthcare professionals were insistent that they did and found the action meaningful and helpful to validate their experience and grief. It should also be noted that few of the extracted findings and their supporting illustrations appeared to reflect the perspective of parents who did not see or hold their baby immediately after the birth. Ultimately, it is likely that parents should be offered the choice as well all the information they need to make the best decision for them. Parents’ concerns about the physical condition of their baby following birth may make them fearful of seeing their stillborn infant and health professionals must be aware that parents’ distress may also mean that information needs to be presented repeatedly and very carefully. Health professionals should be aware that the impact of stillbirth can last long after the birth itself and should be prepared to offer parents referrals to further support after leaving the hospital. Many parents desire information regarding the possibility of having a future baby and also desire special consideration and care approaching a subsequent pregnancy.

Very few studies were located that examined the cultural appropriateness of care received or suggested by healthcare professionals and further research is needed in this area. In terms of cultural appropriateness, health care professionals need to be aware that despite the existence of taboos around death in a number of cultural groups, parents’ personal preferences may be at odds with these. Parents may have their own preferences that do not adhere to cultural norms and this should be accommodated.

A comprehensive search of the available literature conducted for this review revealed a paucity of quantitative studies examining the effects of interventions on women’s and family’s psychosocial outcomes following stillbirth. Furthermore, only one of the experimental and observational studies that was identified by the comprehensive search conducted for this review was of sufficient quality, or at low risk of bias, to consider basing practice upon its findings. While this study by Kersting et al. (2011) reported positive results for the efficacy of an internet-based, cognitive behavioural therapy programme in improving


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psychological outcomes in women who had experienced pregnancy loss, it did not present discrete outcome data for stillbirth participants who comprised a subset of the study’s total population (Kersting et al. 2011). Notably, a much larger sample of participants in the study represented women who had experienced miscarriage (n = 53/78) than those who had experienced stillbirth (n = 15/78). The small sample size of stillbirth participants in the study and the lack of available outcome data for this population, precludes generalisation of the study findings to women who have experienced stillbirth.

Comparison with other studies

The findings of the quantitative component of the review corroborate with the outcome of a recent Cochrane review (Koopmans et al. 2013) that similarly identified the same randomised control trials as the present review when seeking to identify studies that examined the effects of interventions to support parents and families after perinatal death. The present review differed from the Cochrane review in that it focused specifically on women and families who had experienced stillbirth rather than perinatal death (stillbirth and neonate death) and permitted the inclusion of observational studies in addition to randomised control trials to address the question examining the effectiveness of psychosocial interventions in a stillbirth population. Although observational studies are classified as a lower level of evidence, this study design was included in the present review in light of the paucity of well-conducted randomised controlled trials in this field and with the understanding that in some instances the use of randomised controlled trials to examine the effectiveness of interventions within this population would be unethical (i.e., randomising participants to see or not see their baby and its effect on psychological outcomes). No other systematic reviews of qualitative evidence have as yet been conducted on the experiences of parents and families of the meaningfulness or appropriateness of interventions and strategies implemented or suggested by healthcare professionals during and following stillbirth.

Strengths and limitations of the review

The strengths of this review include the comprehensiveness of the search strategy, the rigorous and transparent method of meta-aggregative synthesis used with the included qualitative data which allowed us to explore the factors that may help or hinder effectiveness of any intervention used in health care. This review only included papers published in English, which may constitute a limitation.

Gaps in the evidence include a lack of interventions which seek to include, support and inform the wider family surrounding the parents of stillborn infants, with only one study exploring in any depth the kinds of support parents may desire in terms of supporting their other children – the siblings of the stillborn infant (Avelin et al. 2011). This review did not locate any studies that fulfilled the eligibility criteria from the perspective of the grandparents.

There was a lack of data regarding cultural appropriateness of care and interventions, with only three studies from Taiwan (Hsu, M. T. et al. 2004; Hsu, Tseng & Kuo 2002; Sun, Rei & Sheu 2013), one study from Japan (Yamazaki 2010), one study from the United States (Sanchez 2001) providing limited contributions towards this question. Two of the three studies conducted with Taiwanese participants (Hsu, M. T. et al. 2004; Hsu, Tseng & Kuo 2002) present analyses of data gathered from the same ethnographic study in order to address two different objectives; one on the interpretations that Taiwanese mothers attribute to stillbirth (Hsu, M. T. et al. 2004) and one regarding the same participants’


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experiences, coping strategies and ways their subsequent social interactions were shaped by Taiwanese culture (Hsu, Tseng & Kuo 2002). Furthermore, neither study provided researcher created findings that directly represented themes or metaphors describing the cultural appropriateness of the strategies and interventions provided or suggested by health care professionals but rather conclusions or implications for practice that were used as surrogates to inform this question. At best, the majority of findings to inform this meta-synthesis were classed as ‘credible’ as they lacked direct participant voices to support them.

There should be some consideration of the potential lack of depth and richness of the data analysed in two of the included studies (Kelley & Trinidad 2012; Lee 2012; Pullen, Golden & Cacciatore 2012). For these studies there was only limited data available to the original authors who conducted analyses of responses to open-ended survey items that were part of larger web-based surveys. Qualitative analysis of data from open-ended survey questions relies upon the potentially ‘thin’ or ‘shallow’ information available to authors as opposed to the ‘thick’ and ‘rich’ data potentially collected via other qualitative methods such as interviews.

Some consideration should also be given to the potential limitations that may arise due to sampling bias resulting from the recruitment of participants via organisations such as the Swedish National Infant Foundation and Stillbirth (Avelin et al. 2011; Malm et al. 2011; Rådestad et al. 2013) and Neonatal Death Society (Downe, Schmidt & Kingdon 2013) Similarly, recruitment from support groups (Worth 1997; Yamazaki 2010) may potentially bias the sample to include certain kinds participants who have possibly poorer psychosocial outcomes than the wider population.

Throughout conduct of the present review, variable definitions of stillbirth and their overlap or conflation with alternate definitions of pregnancy loss had the potential to confound the interpretation of study results and impede identification and extraction of study findings relevant to the specific population of interest. While it is recognised that women who lose a baby at any stage of pregnancy are at risk for experiencing grief and adverse psychological wellbeing, women are also likely to have unique and qualitatively differential experiences and reactions to the loss of baby depending on the gestational age of the baby and the specific circumstances surrounding the death. For example, women who experience stillbirth have been found to be at greater risk of complicated grief and are more likely to suffer from long-term psychological distress than women who miscarry (Clauss 2009).

IMPLICATIONS FOR FUTURE RESEARCH

Multiple implications for future research have been identified through the conduct of this systematic review.

Despite widespread implementation of various interventions and forms of care along the stillbirth care continuum, evidence for the effectiveness of particular interventions and their components remains unknown. More well-conducted, high quality studies evaluating the effects of interventions aimed at improving the psychosocial outcomes of parents and families who have experienced stillbirth are needed before any robust recommendations for practice can be made.

Future perinatal research should consider the variable and overlapping conceptualisations and definitions used to describe gestational and infant loss and the potential limitations of


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combining outcomes from different population groups on the interpretation and applicability of the study findings to real world settings. For example, parents presented with the option to terminate a pregnancy due to fetal abnormality are likely to require different informational support and care than parents not faced with such a decision. Further, some studies indicate that parent’s experiences of perinatal or infant loss can vary depending on the age of the fetus or infant at the time of the loss. Accordingly, outcomes from discrete populations should be treated and reported as separate findings; this practice will also facilitate the pooling of results as they relate to distinct populations.

The majority of quantitative studies examined the psychosocial outcomes within the acute period of grief and bereavement that occurs immediately after stillbirth. However, it is well documented that the psychological effects of stillbirth can have a long-term negative impact on parent’s psychosocial wellbeing and adjustment. The experience of stillbirth can also have a potentially deleterious impact on marital relationships or parental partnerships and on parent’s relationships with their living children. Consequently, future studies should seek to utilise longitudinal study designs with long-term follow up of participants to determine the effectiveness of interventions across a range of psychosocial outcomes over time. It is however, an undeniably difficult task to recruit individuals who have experienced stillbirth and maintain their participation throughout the course of a research study due to the ill effects that such an experience can have on wellbeing. Despite this, future research should aim to recruit a representative sample of participants to minimize the effects of attrition and selection bias on study findings.

A number of implications for practice have been derived from the findings examining parent’s experiences of stillbirth within the healthcare environment. These findings indicate that delivery of sensitive and competent care by healthcare professionals can substantively ameliorate the psychological suffering of parents who have experienced stillbirth. While it is hoped that the findings from this review will inform healthcare practice it is acknowledged that successful uptake of research findings relies on implementation strategies that seek to obtain health professional buy-in and actively aim to support changes in practice. The provision of high quality care for families who have experienced stillbirth requires the acquisition of a specialized set of knowledge and skills. Healthcare professionals would likely benefit from training that teaches them the specifics of how to deliver sensitive and culturally appropriate care and bereavement support to parents who have experienced stillbirth. Further, hospital protocols and policies should ensure that healthcare professionals involved in the care and support of bereaved parents are aware of grief and compassion fatigue symptoms and are equipped with techniques that can help them manage or minimise their symptoms. A paucity of research appears available that investigates components of, or the effectiveness of such education or support programs. More research is needed that designs and evaluates implementation of evidence-based guidance within the field of stillbirth in order to determine the true impact of such practice on the psychosocial outcomes of parents and families.

Further gaps in the research were identified during the conduct of this review; the comprehensive search conducted for this review identified a dearth of qualitative literature examining extended family member’s experiences of stillbirth across the healthcare continuum. Given the substantial impact that stillbirth can have on the grandparents and siblings of the stillborn baby and the central role they commonly hold in the family unit, future research should seek to capture their unique perspectives of implemented or suggested healthcare interventions.


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While our findings suggest parents’ experience seeing and holding their stillborn baby is a meaningful activity even despite initial fear or reservations, more research should be directed towards how healthcare professionals can appropriately support parents to make the best decision for their own individual situation and preferences. Research evaluating the most effective and meaningful modes of information provision should also be conducted.

There appears to be paucity in literature assessing the culturally appropriate and sensitive care as it relates to the experience of stillbirth. No qualitative studies were found that explicitly examined participant’s experiences of stillbirth within the healthcare context as it related to their individual cultural beliefs and norms. Future research should examine the meaningfulness of clinical and psychological care from the perspectives of various cultural groups, including Aboriginal and Indigenous populations.

While more primary stillbirth research is required across the board, more systematic reviews that pool the findings from numerous primary studies could also help to inform and improve the evidence-base within this field and facilitate the translation of the findings of this evidence-base into clinical practice.

IMPLICATIONS FOR PRACTICE

The meta-synthesised findings from this review informed the development of numerous implications for practice that are listed below. See Appendix 1 for a list of implications for practice with supporting examples.

Overall experience of stillbirth

These implications for practice (1-7) are derived from findings of parent’s and family’s’ experiences of healthcare provision throughout the experience of stillbirth. The evidence revealed that parents desire sensitive and supportive preparation from healthcare professionals to know what to expect at every stage of the stillbirth experience (see below). The findings in this meta-synthesis add depth and understanding to the features of care that are important and meaningful to parents throughout the experience of stillbirth. The evidence suggests that throughout the stillbirth experience:





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5. Parents may be extremely sensitive to health professional’s communication styles and behaviour. Healthcare professionals can either inadvertently distress parents with disengaged or poorly worded communication (for example by seeming rushed or cold) or can make parents feel nurtured and supported by offering simple gestures of care and empathy. Some examples are physical contact such as holding the mothers hand and comforting parents with warm and genuine language for example saying ‘I’m so sorry’ and reassuring parents that they are not to blame.



Diagnosis

These implications for practice (8-12) are derived from findings of experiences of healthcare provision at the time of diagnosis. The evidence revealed that communication, particularly the way the diagnosis of stillbirth is conveyed, is a key factor that can impact upon parents’ experience of care and their psychological well-being. The evidence suggests that at the time of a diagnosis of stillbirth:







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Induction and birthThese implications for practice (13-20) are derived from findings of experiences of healthcare at the time of induction of labour. The evidence revealed that the provision of clear information and shared decision making about the lead up to and process of birth is very important. At this time sensitivity and respect on the part of the healthcare professional and provision of emotional and psychological support are also key elements. The evidence suggests that at the time of induction of labour:




16. Parents may have differing needs and preferences regarding their preparation for birth. Preferences regarding the length of time between notification of the death of their baby and induction of birth should be established as early as possible. Delays between diagnosis and induction can be perceived to be meaningless or distressing. Conversely, other parents may require time to mentally prepare; the optimal duration between diagnosis and birth should consider individual preferences.


18. Exclusion or disregard of partners from information provision and support may lead to them feeling of ostracised and/or blamed by healthcare professionals.



Immediately post-birth


21. The extent to which parents may appreciate guidance may vary. Encouragement or direction to assist parents about seeing their stillborn baby is important.


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23. Clear and descriptive information regarding what to expect in relation to the physical condition of their stillborn baby may be helpful for parents to make the best decision for them. For example; whether or not their baby will appear injured or discoloured as well as the level of development.







Post birth and onwards

These below implications for practice (30-39) have been derived from findings of experiences of healthcare provision following the immediate experience of stillbirth. The evidence revealed that parents’ information and support needs carry on beyond the diagnosis and birth of their stillborn child. Provision of information and referrals for psychosocial support and the continuity of care especially leading up to and during a subsequent pregnancy are key factors. The evidence presented in this review suggests that:



32. It is important to provide information regarding referrals to psychologists, social workers, counsellors and other support organisations that can be taken up if and


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when desired. Not all parents want to receive this kind of support immediately, but should ideally be provided with written information to refer to if and when necessary. Follow-up could also occur and referral to support offered then also.

33. The impact and appropriateness of the policies and procedures in place following stillbirth should be considered carefully. Parents are often emotionally fragile and the timing of certain practical necessities, such as signing paperwork, may be distressing or too soon. For example, being confronted with the paperwork to register a stillbirth immediately post birth may be distressing and too soon for some parents.


35. Healthcare professionals engage in collaborative decision making with the parents around the most appropriate available and least distressing hospital environment for the parents to be located in. If it is their preference, parents should be moved to a different room. This will also minimise confusion that arises from encounters with staff that are not aware of, nor understand, the parent’s emotional state at that time. Care should also be taken to not amplify parents’ feelings of loneliness and isolation by moving them entirely away from familiar areas of the hospital, for example to different wards with staff who are unfamiliar with their situation.

36. Where possible, continuity of care should be maintained and special care provided leading up to and during any subsequent pregnancy, especially around the time the stillbirth occurred when parents may be most anxious. Parents may appreciate care provided by health professionals who are familiar with their past experience of a stillbirth.



39. The emotional and psychological impact of stillbirth can be powerful years later.


The following implications for practice (40-41) have been derived from findings of experiences regarding the cultural appropriateness of healthcare provision during the experience of stillbirth. The evidence revealed that culturally appropriate care may be informed by a number of considerations. Key factors included understanding that individual parents’ preferences may contravene cultural norms and must be considered too. The evidence suggests that throughout the stillbirth experience culturally appropriate care:



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APPENDIX I: IMPLICATIONS FOR PRACTICE WITH SUPPORTING EXAMPLES

These implications for practice (1-7) are derived from findings of parent’s and family’s’ experiences of healthcare provision throughout the experience of stillbirth. The evidence revealed that parents desire sensitive and supportive preparation from healthcare professionals to know what to expect at every stage of the stillbirth experience (see below). The findings in this meta-synthesis add depth and understanding to the features of care that are important and meaningful to parents throughout the experience of stillbirth. The evidence suggests that throughout the stillbirth experience:


Parents appreciate honesty, straightforward but sensitive and empathetic communication and healthcare professionals who are able to share and express their own emotions with them (Dyson & While 1998, p. 135; Kelley & Trinidad 2012). Healthcare professionals who provide genuine and authentic care aid parents by giving a sense of security and protection from the confronting experience they are involved in (Downe, Schmidt & Kingdon 2013). Conversely, healthcare professionals that seem distant, unsympathetic and cold can cause pain and distress for parents as opposed to relieving it (O'Neill 1998).


Parents can be distressed when healthcare professionals do not seem to understand that the experience of stillbirth is not simply a medical event – perhaps especially in cases where the stillbirth is the result of a non-viable pregnancy (Lee 2012). It is important to parents that healthcare professionals demonstrate that they appreciate that for the parents, the stillbirth experience is the birth and death of a loved and cherished baby. The grief of stillbirth is experienced by parents as just as deep, painful and significant as losing a baby who is born and survives a few weeks in intensive care (Kelley & Trinidad 2012).


Parents may not be easily able to absorb information provided by healthcare professionals during the experience of stillbirth and can experience intense frustration and feelings of psychological distance from the event when healthcare professionals do not seem to be taking into account their state of mind when offering information or making decisions (Downe, Schmidt & Kingdon 2013). Collaborative, sympathetic


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decision making and negotiation between healthcare professionals and parents may help parents understand what is happening and help them cope (Corbet-Owen & Kruger 2001; Lee 2012). Receiving guidance and the necessary information to make incremental decisions regarding their care from healthcare professionals is appreciated (Downe, Schmidt & Kingdon 2013).


Parents appreciate when healthcare professionals show that they understand that the death of their baby is emotionally devastating (Pullen, Golden & Cacciatore 2012). Conversely, healthcare professionals may be experienced as diminishing the emotions of parents by saying things like “you’re young – you can have another” (Kelley & Trinidad 2012, p. 8).

5. Parents may be extremely sensitive to health professional’s communication styles and behaviour. Healthcare professionals can either inadvertently distress parents with disengaged or poorly worded communication (for example by seeming rushed or cold) or can make parents feel nurtured and supported by offering simple gestures of care and empathy. Some examples are physical contact such as holding the mothers hand and comforting parents with warm and genuine language, for example saying ‘I’m so sorry’ and reassuring parents that they are not to blame.

Parents feel more comfortable, supported and validated by healthcare professionals that help them to feel that they are special patients. This can be expressed through taking a special interest in the well-being and health of the parents and by providing comfort (Corbet-Owen & Kruger 2001). Having little regard for parents’ emotions by communicating in a non-empathetic and sensitive manner or saying things that denigrate or invalidate the parents’ emotional experience is perceived negatively and can be distressing. For example healthcare professionals may use unsympathetic communication; “…There was no sympathy. When I asked to see a doctor, this particular doctor came in and said ‘we’re very busy.’ And his exact words, I’ll never forget them ‘Well, with all due respect, your baby’s dead already.’ Which was just the most awful thing you could say” (Downe, Schmidt & Kingdon 2013, p. 7).


Parents may have a strong desire to have clear information regarding the cause of their baby’s death which can be ascertained from a variety of tests and investigations (Downe, Schmidt & Kingdon 2013). When answers are unclear or not provided at all, parents can experience great and lasting frustration and emotional distress (Kelley & Trinidad 2012). Knowing the cause of death is also important to parents in relation to any subsequent pregnancies (Saflund, Sjogren & Wredling 2004).


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Healthcare professionals may have been trained to hide their emotions from patients, however parents may appreciate and feel validated when healthcare professionals are able to show their feelings of sadness (Kelley & Trinidad 2012). Parents may also be distressed by healthcare professionals who may not have received training to develop the necessary skills in communication to appropriately support parents throughout the experience of stillbirth (Dyson & While 1998).

These implications for practice (8-12) are derived from findings of experiences of healthcare provision at the time of diagnosis. The evidence revealed that communication, particularly the way the diagnosis of stillbirth is conveyed, is a key factor that can impact upon parents’ experience of care and their psychological well-being. The evidence suggests that at the time of a diagnosis of stillbirth:


Parents may perceive blunt and disengaged communication from healthcare professionals negatively; “He told me that sometimes these things just happen then left the room” (Pullen, Golden & Cacciatore 2012, p. 346). This is also evident in the following illustration; “But it was almost like well…that’s it, end of story, closed, I’m going to leave you now, or whatever, it’s um…it’s the baby’s life – that’s the end of it…I didn’t feel that he was feeling how we would feel when he said it” (Dyson & While 1998, p. 433).


Healthcare professionals may use language that parents do not understand or that is ambiguous and upsetting; “…we had no idea what the doctor was talking about as we had never heard of it [anencephaly]. All I remember the doctor say to us was NOT COMPATIBLE WITH LIFE” (Lee 2012, p. 68). This is in contrast to when information was presented clearly and collaboratively; “They really explained in detail what they were doing the whole time, and what the next step was. Here you can see this, and here you can see that, and then here's the heart and it doesn't beat (Rådestad et al. 2013, p. e3).

Mothers described the time immediately after learning that their baby was dead as unreal and numbing. They often had difficulty comprehending what had happened and what it would mean; “You don’t really understand what they’ve told you, even though you know the worst has happened. It’s unreal…that whole time…I don’t know…it’s like I can’t remember it, can’t describe my feelings. It was like being in a straitjacket” (Trulsson & Rådestad 2004, p. 191).



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Parents can be sensitive to and remember healthcare professionals’ remarks and whether or not they were supportive; “... maybe an hour after we had had our scan...a social worker…was very rude...She had no emotion and basically said this happens all the time and that we can get the baby bonus [a family assistance payment]. Who wants to hear that when they have just been told that they won’t have a baby to take home!!! Very insensitive” (Lee 2012, p. 66). This is also evident in this illustration from a father’s perspective;” I got really choked. I didn’t begin to cry directly, I got more speechless so to say. The doctor who gave us the information did this in a very good manner. I tried to comfort my wife who got more upset and despairing than me” (Samuelsson, Radestad & Segesten 2001, p. 125).


Delays and extended silence from healthcare professionals in presenting verbal information during examinations can be perceived negatively by parents; “I just got this feeling that now something is wrong. There is something they want. I asked several times if they wanted to say something but we just had to watch while they were looking. I probably asked a hundred times during those minutes, what they were doing and if something was wrong” (Rådestad et al. 2013, p. e3).


Mothers expressed that it would afford them a great sense of comfort being able to see the same healthcare professionals at the induction of birth as those present at the time of diagnosis; “We went and talked to the midwife on the obstetrics ward before we went home—about what would happen the next day. It was really good that we got to visit her, so when we arrived the next day she received us. She came along with us to the delivery room and sat and talked to us without making us feel rushed (Trulsson & Rådestad 2004, p. 191). Lack of continuity of care from diagnosis, such as not seeing the healthcare professional who delivered the information again, was found to be distressing to parents (Pullen, Golden & Cacciatore 2012).

These implications for practice (13-20) are derived from findings of experiences of healthcare at the time of induction of labour. The evidence revealed that the provision of clear information and shared decision making about the lead up to and process of birth is very important. At this time sensitivity and respect on the part of the healthcare professional and provision of emotional and psychological support are also key elements. The evidence suggests that at the time of induction of labour:


Mothers may be experiencing disorientation, confusion and shock as a result of receiving the news that their baby has died which can impact on their ability to process information. Leading up to birth, perceived lack of communication on the part of the


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attending healthcare professionals can make the situation harder to bear and amplify feelings of distress (Kelley & Trinidad 2012).



Healthcare professionals can play a part in validating the emotional experiences of parents at the time of birth. Mothers appreciated healthcare professionals who accepted and responded to their feelings as they experienced them rather than feeling as though they were expected to feel or behave in a certain way (Dyson & While 1998). Healthcare professionals who sympathetically acknowledge mothers’ sorrow and who are warm, attentive and caring are found to be sources of great support at the time of birth; “I thought the staff who took care of us were fantastic. They were people, not programmed machines in a huge organization. People who cared, who dared to cry with us, who dared to stand by us in our pain and sorrow. Just totally fantastic” (Trulsson & Rådestad 2004, p. 192).

16. Parents may have differing needs and preferences regarding their preparation for birth. Preferences regarding the length of time between notification of the death of their baby and induction of birth should be established as early as possible. Delays between diagnosis and induction can be perceived to be meaningless or distressing. Conversely, other parents may require time to mentally prepare; the optimal duration between diagnosis and birth should consider individual preferences.

The optimal time between diagnosis and birth from the perspective of parents depends both upon the particular circumstances and the mother’s needs (Trulsson & Rådestad 2004). Some mothers may feel confused by the decision not to induce birth immediately as they can feel that they want to stop being pregnant “as soon as possible”; ‘‘I was not in a position to say what I wanted or did not want, the only thing I knew was that I did not want to wait any longer, I just wanted it over and done with’’ (Malm et al. 2011, p. 53). Waiting for the induction may be against the parents’ wishes and has been described by parents as meaningless; ‘‘He (the doctor) told me to go back home, go back home and tell your family, he said, and then come back tomorrow. I could not believe it, just go home like that’’ (Malm et al. 2011, p. 53). Findings from some fathers indicate that having time to adjust to the death and calm down in peace was essential; “One-half of the fathers thought that it was good to be allowed to go home after being informed of the intrauterine death and prepare mentally for the delivery. The others found a measure of security in being able to isolate themselves at the hospital“ (Samuelsson, Radestad & Segesten 2001, p. 126). Mothers too, may appreciate the choice to go home before induction; ““Then they gave us the choice if we wanted to go home and spend the night at home or if we wanted to stay there on the delivery ward but we decided to


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go home and come back the next day. It was really important for us, at least we’ve noticed afterwards, that we got to go home, got to be alone together and…digest it, you might say” (Trulsson & Rådestad 2004, p. 191). Mothers may desire time to fortify themselves for a vaginal delivery as opposed to a caesarean section and also to prepare themselves psychologically for the birth by processing any information provided by healthcare professionals. Physical and psychological rest before the birth and time to prepare to meet and say farewell to their baby may also be valued by mothers (Trulsson & Rådestad 2004, p. 191).


E.g. Parents appreciate knowing what to expect prior to the induction and birth. Having every step clearly explained, being given birthing options and explanations for what is going to happen and what is happening during birth are valuable to parents (Pullen, Golden & Cacciatore 2012).

18. Exclusion or disregard of partners from information provision and support may lead to them feeling ostracised and/or blamed by healthcare professionals.

Fathers may feel left out, confused and marginalised by non-inclusive healthcare professionals; “…(O)f course there is a heavy concentration on the mother; it has to be that way, it’s only natural since she is the central figure. But somewhere in there, it probably would have been most effective, I think, if I had been able to talk to someone from a purely male point of view. It’s not so easy to absorb everything when there is so much moaning and groaning going on and you are just standing there doing nothing; it’s not all that easy” (Samuelsson, Radestad & Segesten 2001, p. 126).


Birthing rooms in obstetric wards are designed to welcome new babies and not to mourn babies who have died; the close proximity to other parents and their babies can be distressing (Kelley & Trinidad 2012). For example; “They didn’t put a sticker on my door, so they kept coming in—“Do you have your baby?” That was horrible because they came in two or three times. They came in to take pictures of him, thinking he was alive. I don’t think they knew what to do—it was horrible” (Kelley & Trinidad 2012, p. 6).

Parents’ particular preferences regarding their location within the hospital may be different; while some prefer to be located near to other mothers and babies to help them to realise that not all babies die, private rooms with the option of having more privacy are desirable (Worth 1997). Moving parents away from other mothers and babies however may also be distressing when the other locations in the hospital are also not appropriate for supporting parents following the experience of stillbirth. ”One


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parent reported being transferred to the geriatric ward where the staff thought she would have more quiet and privacy… the result was that the ward staff wondered what she was doing there, and the patient had to explain, several times, that she had been moved out of OB because she had had a stillbirth” (Kelley & Trinidad 2012, p. 6).


Parents report that hearing noises of the bustling activity and other births around them added to their suffering; “They left me in the same floor as everybody else. You hear babies crying. I mean, that was horrible. They put a sticker on your door. I was like, “What is that for?” They’re like, “Well, it’s to let everybody know that you don’t have a baby here.” It was just horrible” (Kelley & Trinidad 2012, p. 6).


21. The extent to which parents may appreciate guidance may vary. Encouragement or direction to assist parents how to see and hold their stillborn baby is important.

Healthcare professionals should communicate with parents clearly and directly in order to be sure of how parents feel about meeting their baby. This communication can also include reassurance about holding the baby and doing other activities with the baby (Dyson & While 1998). Parents may often desire time to decide whether or not they would like to see and hold their baby, so regular and individualised updates and information as labour progresses can be valuable(Downe, Schmidt & Kingdon 2013). As one parent stated; “I wish someone had said to me in those first few hours. Even if you don’t want to see her now, you can see her in an hour or two. Or in a day or so… I was left to believe because I said I wasn’t ready to see her, that was final” (Downe, Schmidt & Kingdon 2013, p. 5).


Parents may regret not seeing or holding their baby (Worth 1997); healthcare professionals can be particularly sensitive to parents’ needs and provide encouragement and support to have physical contact with their baby (Dyson & While 1998). Some parents may not wish to see their baby at first due to the physical condition of the baby immediately following birth(Sun, Rei & Sheu 2013). Parents may appreciate being supported by healthcare professionals to meet their baby when they are ready (Lee 2012, p. 68). While some parents may initially not want to see their baby at all, encouragement from staff helped them to eventually meet their baby which they did not regret afterwards (Trulsson & Rådestad 2004).

23. Clear and descriptive information regarding what to expect in relation to the physical condition of their stillborn baby may be helpful for parents to make the best decision for them. For


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example; whether or not their baby will appear injured or discoloured as well as the level of development.

While some parents may find their baby’s appearance frightening at first, this was temporary and beyond the initial shock they were able to focus on the baby’s normal features (Trulsson & Rådestad 2004). Parents can appreciate sensitively worded descriptions of how their baby might look after birth; for example “her skin might be peeling a bit” (Dyson & While 1998, p. 435). Parents may be anxious or frightened by the thought of meeting their baby due to fears that they will be distressed by their appearance. While some parents may choose not to see their baby because of this fear (Sun, Rei & Sheu 2013), other parents decided to see their baby despite their concerns. For example, one father (Weaver-Hightower 2012, p. 470) chose to hold his stillborn baby after she was clothed by the nurses but subsequently regretted that he had not had ‘the courage or the foresight’ to see her naked. Parents may not appreciate healthcare professionals deciding on their behalf not to encourage parents to see their baby because of how the baby looks (Corbet-Owen & Kruger 2001). Parents may desire healthcare professionals to be forthcoming with information pertaining to the likely physical condition of their baby and may be very upset if they are confronted by unexpected changes in their baby’s appearance (Downe, Schmidt & Kingdon 2013; Sun, Rei & Sheu 2013).


One or both parents may want to see or not see their baby; “My husband did not want me to see the infant because doing so would make things much more painful. However, I wanted to check and see if anything was wrong with my baby. He appeared normal, but his life was taken away before he was born” (Sun, Rei & Sheu 2013, p. 5).


For parents, encounters with their stillborn baby can be strongly influenced by what activities they engage in while in the birthing room; how they recall their experience – whether positively or negatively, may be dependent upon their healthcare professionals’ knowledge and actions. As one couple explained; “I told the midwife before the delivery that I wanted to have him on my chest. I was scared of not coping with seeing him. I have always dreamed about giving birth to a baby. We had him in the room for seven hours [Mother]. We dressed him; I think one might regret not having done it. It is not easy to do, but afterwards you feel better [Father]. The staff told us to say when we were ready to say good-bye to him; I said maybe never, but after seven hours we said we had seen him enough” [Mother] (Saflund, Sjogren & Wredling 2004, p. 134). Parents may appreciate healthcare professionals to persuade and guide them in meeting their baby as they do not know how to proceed; “Of course, I was still curious


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despite the outcome and wanted to see how he looked. But, at the same time, it was not... did not feel natural somehow. No, I think I had to be led through all these steps. They helped me with it ” (Samuelsson, Radestad & Segesten 2001, pp. 126-127). Practical suggestions for parents can include offering that parents hold, bathe, explore, clothe and spend time with their baby; parents also may not realise that they can bring clothes from home for their baby to wear and this can be suggested by healthcare professionals (Malm et al. 2011). Specific suggestions can also be made to help parents meeting their stillborn babies; for example, parents of stillborn twins may not think to hold both babies simultaneously (Lee 2012).


The time parents spend with their stillborn baby seems to be more important in qualitative terms than in relative terms; the length of time was always too short for parents (Saflund, Sjogren & Wredling 2004). Parents may also have differing preferences for saying goodbye to their baby, with some parents wishing to literally ‘hand the baby over’ to a member of staff while others wishing to ‘leave’ the baby in the room themselves (Dyson & While 1998, p. 435).


Healthcare professionals can support and encourage parents to bring in a camera to take pictures of their baby as parents often appreciate this offer (Kelley & Trinidad 2012). For the parents of stillborn babies, tangible mementos such as hand and footprints, locks of hair and photographs can be extremely important (Weaver-Hightower 2012). Parents may appreciate when healthcare professionals aid them in their collection by suggesting and supporting that it occurs (Downe, Schmidt & Kingdon 2013; Saflund, Sjogren & Wredling 2004). While parents may not feel able to look at or take the items home immediately, they can be grateful that healthcare professionals have supported them to collect and store the items (Lee 2012; Samuelsson, Radestad & Segesten 2001).


Parents want healthcare professionals to treat their stillborn baby with the same respect and dignity afforded to a living child; “They treated him as if he was a living baby, telling him how perfect and beautiful he was. They treated his body with respect and explained to him what they were doing (like when they dressed him, they explained to him that they wanted him to be warm and comfortable)” (Lee 2012, p. 69).



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Parents may appreciate healthcare professionals’ support in helping them to include the siblings and potentially other family members in meeting the stillborn baby (Avelin et al. 2011).

These implications for practice (30-39) have been derived from findings of experiences of healthcare provision following the immediate experience of stillbirth. The evidence revealed that parents’ information and support needs carry on beyond the diagnosis and birth of their stillborn child. Provision of information and referrals for psychosocial support and the continuity of care especially leading up to and during a subsequent pregnancy are key factors. The evidence presented in this review, suggests that:


“I had a wonderful doctor. I felt completely taken care of and I was sent home with a huge packet of information. Stuff was mailed to me that the hospital had set up. A pastor came and dedicated him. A social worker came in and talked to us and told us kind of what was going to happen to us as a human in grief” (Kelley & Trinidad 2012, p. 6).Parents may request information regarding practical issues, such as how to register the baby’s birth and how to arrange for a funeral, family issues such as how to involve and support siblings and other family members, or information regarding follow up support from psychologists, social workers or counsellors. Information and support should be given at an appropriate time. For example, meeting with a social worker too soon may not be appropriate: “... maybe an hour after we had had our scan...a social worker…was very rude...She had no emotion and basically said this happens all the time and that we can get the baby bonus [a family assistance payment]. Who wants to hear that when they have just been told that they won’t have a baby to take home!!! Very insensitive” (Lee 2012, p. 66) .

Some parents may want to meet and speak with the healthcare professionals involved after the stillbirth. Talking about the event with those who were involved may be beneficial for the grieving process; "She [the midwife] made me feel incredibly proud. A natural reaction after just giving birth is re-living the birth and wanting to talk about the birth experience. It sounds odd, but because I’d had such a good birth, I felt that I could behave like a normal mother. I could talk about that experience as a normal labour to close family. That was really important to acknowledge Zoe in a way" (Downe, Schmidt & Kingdon 2013, p. 7).


For example, meeting with a social worker too soon may not be appropriate: “... maybe an hour after we had had our scan...a social worker…was very rude...She had no emotion and basically said this happens all the time and that we can get the baby bonus [a family


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assistance payment]. Who wants to hear that when they have just been told that they won’t have a baby to take home!!! Very insensitive.” (Lee 2012, p.66)

32. It is important to provide information regarding referrals to psychologists, social workers, counsellors and other support organisations that can be taken up if and when desired. Not all parents want to receive this kind of support immediately, but should ideally be provided with written information to refer to if and when necessary. Follow-up could also occur and referral to support offered then also.

Parents expressed a need to more information regarding grief support, and highlighted the importance of follow up visits with social workers, counsellors or support groups. When parents received this support, it was perceived to be highly beneficial; “We were given multiple opportunities to talk to health professionals as well as referrals for later (which we took up)… The level of support we received was second to none” (Lee 2012, p. 66).

33. The impact and appropriateness of the policies and procedures in place following stillbirth should be considered carefully. Parents are often emotionally fragile and the timing of certain practical necessities, such as signing paperwork, may be distressing. For example, being confronted with the paperwork to register a stillbirth immediately post birth may be too soon for some parents.


Some parents may want to leave as soon as possible after the birth, and other parents may wish to stay. Some parents reported that spending the night in the hospital with their baby was beneficial for the grieving process (Dyson & While 1998). It may be helpful for parents to be given information regarding taking their baby home or staying with the baby in the hospital. Parents may feel uncertain or fearful about how their baby may change over time, and this may prevent them spending more time with their baby: “We were together with the baby and caressed him for a couple of hours. Afterwards I regret that we did not have him longer, and I also regret that we did not have him in the room when we were sleeping. What influenced me was that I did not know for how long the staff thought it was OK to be with the baby, and I was also afraid that the body would change ”(Saflund, Sjogren & Wredling 2004, p. 134).

35. Healthcare professionals engage in collaborative decision making with the parents around the most appropriate available and least distressing hospital environment for the parents to be located in. If it is their preference, parents should be moved to a different room if one is available. This will also minimise confusion that arises from encounters with staff that are not aware of, nor understand, the parent’s emotional state at that time. Care should also be taken to not amplify parents’ feelings of loneliness and isolation by moving them entirely away from familiar areas of the hospital, for example to different wards with staff who are unfamiliar with their situation.

Parents will have individual preferences regarding their preferred hospital environment following a stillbirth. Being relocated may provide an opportunity to grieve away from


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the sounds of other parents and babies, however some parents may find this isolating (Pullen, Golden & Cacciatore 2012). Relocating parents to other wards may cause distress if hospital staff are not aware of the parents’ situation; for example, one mother had to explain to staff several times that she had been relocated to the geriatric ward due to her stillbirth(Kelley & Trinidad 2012, p. 6).

36. Where possible, continuity of care should be maintained and special care provided leading up to and during any subsequent pregnancy, especially around the time the stillbirth occurred when parents may be most anxious. Parents may require extra care and support provided by healthcare professionals who are familiar with their past experience of a stillbirth.

Pregnancy following stillbirth will likely be stressful for parents. During pregnancy, labour and also in the postnatal period women repeatedly expressed fears that their baby was going to die; “...the end (of the pregnancy) was very, very difficult, with her…and everyday was a battle really to…not get swamped up with the dear that she could die ”(Dyson & While 1998, p. 437). The time corresponding to the previous stillbirth may be met with particular anxiety, and one mother expressed a need for particular care around that time: “Maybe you can make a note on the calendar of when the time was when they lost before…that sort of thing…and perhaps calling round in that week” (Dyson & While 1998, p. 437). It is important that parents be able to access advice and care when needed “They certainly have to be very understanding about every anxiety I have. They mustn’t doubt me when I ask, I say perhaps unreasonable things…I need to be able to…at any time I want I can just turn up at (the hospital) and say look I’m not happy…I will need a midwife to say to me, OK lets go and have a look…you’re all right to come back any time” (Dyson & While 1998, pp. 437-438).

Some parents expressed a preference that healthcare professionals be aware of the previous stillbirth during any subsequent pregnancies, and may find that having the same healthcare professionals is reassuring: “I got pregnant again after 4 to 5 months. Both my pregnancies after the stillborn baby have been very anxious. I got the same midwife and I am very pleased. I had special antenatal care, and for me it was very important to have staff around who know my situation. Both subsequent deliveries were induced at my own request” (Saflund, Sjogren & Wredling 2004, p. 135). “The midwife I had with my stillborn child worked at the antenatal clinic at my next pregnancy. I also had the same physician and the chaplain christened the child. This felt very reassuring” (Saflund, Sjogren & Wredling 2004, p. 135).


Mothers reported a need for healthcare professionals to provide information regarding physical issues they would face in the postpartum period, such as lactation suppression. Information provided to parents should be tailored to the stillbirth experience; parent may find receiving general antenatal information distressing; "She gave me a book, a parenting book. And she said "this is the only thing I can give you. The information is at


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the back and I didn’t have time to print it." It was all about new parents” (Downe, Schmidt & Kingdon 2013, p. 7).

Physical activity may also benefit the mental and emotional health of mothers following stillbirth, and some women expressed a desire for specific information regarding physical activity; “I think it would have been easier if my doctor gave me information maybe that would’ve helped me motivate a little bit” and “Wish my health care provider would have provided more information about physical activity” (Huberty et al. 2014, p. 6).


Having memorabilia and evidence of the baby was reported by parents to be invaluable after a stillbirth, however many parents felt that due to the highly stressful nature of the stillbirth, they may not have chosen to create or keep items of memorabilia themselves at that time. Parents appreciated offers to have photographs of their baby taken as this was not something they would have thought of (Kelley & Trinidad 2012). One parent stated: “It’s good that somebody thinks of taking pictures; you are very thankful afterwards”(Samuelsson, Radestad & Segesten 2001, p. 127). Some parents may decline items of memorabilia at the time of the stillbirth, but hospitals may be able to secure the items in case parents change their minds later. Some parents did not think that they wanted to keep any memorabilia at the time, however then expressed gratitude for having tangible things at a later date. “Everything felt so wrong. It was almost taboo: you don’t keep a picture of a dead baby. But of course that is the only thing we have left now.” (Samuelsson, Radestad & Segesten 2001, p. 127).

39. The emotional and psychological impact of stillbirth can be powerful and continue for years after.


The following implications for practice (40-41) have been derived from findings of experiences regarding the cultural appropriateness of healthcare provision during the experience of stillbirth. The evidence revealed that culturally appropriate care may be informed by a number of considerations. Key factors included understanding that individual parents’ preferences may contravene cultural norms and must be considered also. The evidence suggests that throughout the stillbirth experience culturally appropriate care:


Parents may choose to see their stillborn babies despite cultural taboos or traditions that dictate that they should behave otherwise


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Parents may appreciate when healthcare professionals are able to help them access their chosen source of spiritual or religious services while at the hospital (Sanchez 2001).


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APPENDIX II: SEARCH STRATEGY

PubMed (pubmed.gov)

Search Query

#1 Stillbirth*[tw] OR Stillborn*[tw] OR Still-birth*[tw] OR Still-born*[tw] OR Fetal death*[tw] OR Foetal death*[tw] OR Fetus death*[tw] OR Foetus death*[tw] OR Intrauterine death*[tw] OR Utero death*[tw] OR Perinatal death*[tw] OR Antepartum death*[tw] OR Antenatal death*[tw] OR Intrapartum death*[tw] OR Prenatal death*[tw]

#2 "Stillbirth"[Mesh] OR "fetal death"[Mesh] OR "Perinatal Mortality"[Mesh]

#3 Psychosocial[tiab] OR Psycholog*[tiab] OR Psychotherap*[tiab] OR Psychopath*[tiab] OR Social[tiab] OR Griev*[tiab] OR Grief[tiab] OR Anxiety[tiab] OR Emotion*[tiab] OR Wellbeing[tiab] OR Well-being[tiab] OR Mourn*[tiab] OR Depressi*[tiab] OR Bereave*[tiab] OR Guilt[tiab] OR Cope*[tiab] OR Coping[tiab] OR Stress*[tiab]

#4 "Counseling"[Mesh] OR "Aftercare"[Mesh] OR "Social Support"[Mesh] OR "Adaptation, Psychological"[Mesh] OR "parents/psychology*"[Mesh] OR "mothers/psychology*"[Mesh] OR "Women/psychology"[Mesh] OR "Parent-Child Relations"[Mesh] OR Professional-Patient Relations*[Mesh] OR "Fathers/psychology"[Mesh] OR "Depression"[Mesh] OR "Depressive Disorder, Major"[Mesh] OR "Emotions"[Mesh] OR "Anxiety"[Mesh] OR "Anxiety Disorders"[Mesh] OR "Bereavement"[Mesh] OR "Grief"[Mesh] OR "Professional-Family Relations"[Mesh] OR "Guilt"[Mesh] OR "Family/psychology"[Mesh] OR "Mental Health"[Mesh] OR "Psychotherapy"[Mesh] OR "Psychology"[Mesh]

#5 #1 OR #2

#6 #3 OR #4

#7 #5 AND #6

CINAHL (via EBSCO Host)

Search Query

#1 "stillbirth*" OR "stillborn*" OR "Still-birth*" OR "Still-born*" OR "F?etal death*" OR "F?etus death*" OR Intrauterine W1 death* OR Utero W1 death* OR Perinatal W1 death* OR Antepartum W1 death* OR Antenatal W1 death* OR Intrapartum W1 death* OR Prenatal W1 death*

#2 (MM "Perinatal Death")

#3 Psychosocial OR Psycholog* OR Psychotherap* OR Psychopath* OR Social OR Griev* OR Grief OR Anxiety OR Emotion* OR Wellbeing OR Well-being OR Mourn* OR Depressi* OR Bereave* OR Guilt OR Cope* OR Coping OR Stress*


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#4 (MH "Counseling+") OR (MH "After Care") OR (MH "Support, Psychosocial") OR (MH "Psychotherapy+") OR (MH "Psychology") OR (MH "Psychology, Social+") OR (MH "Adaptation, Psychological") OR (MH "Parental Attitudes+") OR (MH "Parent-Child Relations+") OR (MH "Professional-Patient Relations+") OR (MH "Parents+/PF") OR (MH "Depression+") OR (MH "Emotions+") OR (MH "Guilt") OR (MH "Family/PF") OR (MH "Professional-Family Relations") OR (MH "Anxiety") OR (MH "Anxiety Disorders+") OR (MH "Bereavement+") OR (MH "Grief+") OR (MH "Mental Health") OR (MH "Mental Health Services+")

#5 #1 OR #2

#6 #3 OR #4

#7 #5 AND #6

PsycINFO (Ovid SP interface)

Search Query

#1 "stillbirth$" OR "stillborn$" OR "Still-birth$" OR "Still-born$" OR "F?etal death$" OR "F?etus death$" OR Intrauterine adj2 death$ OR Utero adj2 death$ OR Perinatal adj2 death$ OR Antepartum adj2 death$ OR Antenatal adj2 death$ OR Intrapartum adj2 death$ OR Prenatal adj2 death$

#2 *spontaneous abortion/ OR *sudden infant death/ OR *birth/

#3 Psychosocial OR Psycholog$ OR Psychotherap$ OR Psychopath$ OR Social$ OR Griev$ OR Grief OR Anxiety OR Emotion$ OR Wellbeing OR Well-being OR Mourn$ OR Depressi$ OR Bereave$ OR Guilt OR Cope$ OR Coping OR Stress$

#4 *counseling/ OR exp *psychotherapy/ OR *aftercare/ OR *social support/ OR *social psychology/ OR exp *emotional adjustment/ OR *adjustment/ OR *coping behavior/ OR exp *parental attitudes/ OR *"psychology of women"/ OR exp parent child relations/ OR *interpersonal relationships/ OR exp *emotions/ OR *anxiety/ OR exp anxiety disorders/ OR *"depression (emotion)"/ OR *grief/ OR *guilt/ OR exp *bereavement/ OR exp *major depression/ OR *emotional responses/ OR *well being/ OR *psychosocial factors/ OR *mental health/ OR *mental health services/

#5 #1 OR #2

#6 #3 OR #4

#7 #5 AND #6


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EMBASE (EMBASE.com)

Search Query

#1 stillbirth*:ab,ti OR stillborn*:ab,ti OR 'still birth':ab,ti OR 'still born':ab,ti OR 'fetal death':ab,ti OR 'fetus death':ab,ti OR 'foetal death':ab,ti OR 'foetus death':ab,ti OR (intrauterine NEXT/2 death*):ab,ti OR (utero NEXT/2 death*):ab,ti OR (perinatal NEXT/2 death*):ab,ti OR (antepartum NEXT/2 death*):ab,ti OR (antenatal NEXT/2 death*):ab,ti OR (intrapartum NEXT/2 death*):ab,ti OR (prenatal NEXT/2 death*):ab,ti

#2 'stillbirth'/exp/mj OR 'perinatal mortality'/exp/mj

#3 Psychosocial:ab,ti OR Psycholog*:ab,ti OR Psychotherap*:ab,ti OR Psychopath*:ab,ti OR Social:ab,ti OR Griev*:ab,ti OR Grief:ab,ti OR Anxiety:ab,ti OR Emotion*:ab,ti OR Wellbeing:ab,ti OR Well-being:ab,ti OR Mourn*:ab,ti OR Depressi*:ab,ti OR Bereave*:ab,ti OR Guilt:ab,ti OR Cope*:ab,ti OR Coping:ab,ti OR Stress*:ab,ti

#4 'counseling'/exp OR 'aftercare'/exp/mj OR 'psychosocial care'/exp/mj OR 'social support'/exp/mj OR 'adaptive behavior'/de OR 'psychology'/mj OR 'social psychology'/mj OR 'child parent relation'/exp OR 'doctor patient relation'/de OR 'nurse patient relationship'/de OR 'depression'/exp OR 'emotion'/exp/mj OR 'grief'/exp OR 'bereavement'/de OR 'anxiety'/exp OR 'guilt'/exp OR 'anxiety disorder'/exp OR 'mother fetus relationship'/exp OR 'psychotherapy'/exp/mj OR 'mental health'/exp OR 'mental health care'/exp AND [embase]/lim

#5 (ti(review*) OR ab(review*) OR ti(meta-analysis) OR ab(meta-analysis)

#6 #1 OR #2

#7 #3 OR #4

#8 #5 AND #6

Grey literature search

ClinicalTrials.gov Conducted: 14 April 2014 Search engine: website search engine

Search query: stillbirth OR perinatal in search terms field; selected completed status Search results: 248

metaRegister of Controlled Trials (mRCT) www.controlled-trials.com/mrct/ Conducted: 14 April 2014 Search engine: all registers within the metaRegister of Controlled Trials (mRCT) Search query: stillbirth OR perinatal Search results: 446 results

Stillbirth and Neonatal Death Charity (SANDS) www.uk-sands.org

Conducted: 15 April 2014 Search engine: Google Scholar Search query: experience site: uk-sands.org

http://www.controlled-trials.com/mrct/

http://www.uk-sands.org/


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Search results: 163

International Stillbirth Alliance (ISA) www.stillbirthalliance.org Conducted: 16 April 2014 Search engine: Google Scholar, and manual search under Resources Tab Search query: experience site:stillbirthalliance.org Search results: 319

Perinatal Society of Australia and New Zealand (PSANZ) www.psanz.com.au Conducted: 16 April 2014 Search engine: Google Scholar, and website search engine Search query: experience site:psanz.com.au (Google Scholar); "stillbirth" in 'All words' (website search engine) Search results: 37 (Google Scholar); 10 (website search engine)

Australian and New Zealand Stillbirth Alliance (ANZSA) www.stillbirthalliance.org.au Conducted: 17 April 2014 Search engine: Google Scholar; manual search under Research Tab Search query: experience site:stillbirthalliance.org.au Search results: 52 (Google Scholar)

SIDS and Kids www.sidsandkids.org Conducted: 17 April 2014 Search engine: Google Scholar; manual search under Research Tab Search query: stillbirth AND experience site:sidsandkids.org Search results: 119

Stillbirth and Neonatal Death Support Group www.sands.org.au Conducted: 17 April 2014 Search engine: Google Scholar; manual search under Resource Tab Search query: experience site:sands.org.au/ Search results: 39

Pregnancy Loss and Infant Death Alliance www.plida.org Conducted: 17 April 2014 Search engine: Manual search of all Tabs as “stillbirth” and “experience” returned too many results in Google Scholar due to site’s multiple language usage. Search query: Searched all tabs in website Search results: 0

Australian Centre for Grief and Bereavement www.grief.org.au Conducted: 17 April 2014 Search engine: Google Scholar Search query: stillbirth site:grief.org.au/ Search results: 3

Pregnancy Loss Australia www.teddyloveclub.org.au Conducted: 17 April 2014 Search engine: Google Scholar Search query: stillbirth site:teddyloveclub.org.au Search results: 20

Antenatal Results and Choices

Conducted: 22 April 2014

http://www.stillbirthalliance.org/

http://www.psanz.com.au/

http://www.stillbirthalliance.org.au/

http://www.sidsandkids.org/

http://www.sands.org.au/

http://www.plida.org/

http://www.grief.org.au/

http://www.teddyloveclub.org.au/


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Search engine: Google Scholar

Search query: experience site:arc-uk.org/

Search results: 33

A heartbreaking choice Conducted: 22 April 2014 Search engine: Google Scholar

Search query: stillbirth site:aheartbreakingchoice.com

Search results: 17

SAFDA Conducted: 22 April 2014 Search engine: no search conducted; no website. Support group only? Search query: - Search results: -


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APPENDIX III: CRITICAL APPRAISAL TOOLS


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APPENDIX IV: DATA EXTRACTION TOOLS


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APPENDIX V: TABLE OF EXCLUDED STUDIES

Question 1 – Quantitative studies excluded on critical appraisal

1. Forrest, G. C., E. Standish, et al. (1982). Support after perinatal death: a study of support and counselling after perinatal bereavement.

Reason for exclusion: Randomisation to groups is stated but no details are provided by the authors. It is unclear if the allocator and/or participants were aware of which group they had been assigned to – the routine care of the control group was variable enough that it included some bereavement support where deemed necessary by healthcare staff. There were clear differences in the amount and type of intervention in both the control and treatment groups, for example in the treatment group, only 80% of the group spoke to a psychiatrist. A range of healthcare professionals delivered the interventions following recommendations for stillbirth – not the same staff on each occasion. There was high loss to follow up (9 from treatment and 6 from control), although some details were provided, it is unclear if they were included in the analysis. Assessors were blinded to treatment allocation. Demographic and other details of the mothers and families are not provided. Analysis was qualitative for the most part. Reporting of effects and statistics is unclear.

2. Lilford, R. J., P. Stratton, et al. (1994). A randomised trial of routine versus selective counselling in perinatal bereavement from congenital disease.

Reason for exclusion: Determined to be of low methodological quality following critical appraisal. Authors limited their search strategy to Medline only, did not define the critical appraisal and data extraction protocols also no assessment of publication bias was made.

3. Rådestad, I. (2001). Stillbirth: care and long-term psychological effects.

Reason for exclusion: Determined to be of low methodological quality following critical appraisal. The sample is representative of pregnancies in Sweden in 1991; NB. stillbirth >28 weeks gestation in this study rather than definition at >20wks. Cases and controls from same hospital at same time, though no other matching nor adjustment/correction appears to have been conducted for example previous parity, religion, health status, marital status etc. It is unclear if the responders 82 and 85% were matched, or if the “real” response rate according to matching was less than this. Results report only in relation to the stillbirth cases rather than in relation to the control group. Majority of data provided appears to be repeat of Rådestad and Steineck et al., (1996) (same study).

4. Rådestad, I., G. Steineck, et al. (1996). Psychological complications after stillbirth - Influence of memories and immediate management: Population based study.

Reason for exclusion: Determined to be of low methodological quality following critical appraisal. Sample is representative of pregnancies in Sweden in 1991; NB. stillbirth > 28 weeks gestation in this study rather than definition at >20wks. Cases and controls from same hospital at same time, though no other matching nor adjustment/correction appears to have been conducted for example previous parity, religion, health status, marital status etc. Data was collected by postal questionnaire re stillbirth experience,


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however it is unclear how/when the STAI and depression scale was administered or if this was the questionnaire – it is unclear how details of delivery were ascertained. Data recorded 3 years after the event and from mother’s responses – not medical record. It is unclear if the responders 82 and 85% were matched, or if the “real” response rate according to matching was less than this. Majority of data provided is repeat of Rådestad 2001 (same study).

5. Rådestad, I., P. J. Surkan, et al. (2009). Long-term outcomes for mothers who have or have not held their stillborn baby.

Reason for exclusion: All Swedish speaking women and living in Sweden that had a stillborn baby in 1991 were identified. This was 15 years before the study was submitted for publication. A statement indicates the women were surveyed ~ 3years since stillbirth however this would likely impact in terms of recall bias considering questions of healthcare service were asked. No outcomes recorded seemed to rely on this time difference so it is unclear why there was such a delay in the conduct of the survey. It is unclear whether the ‘characteristics’ recorded were at the time of the survey, or the time of the stillbirth. A study specific questionnaire was used tested for face to face validity with 15 women however some questions were completely subjective i.e. “…enough” support; outcomes (anxiety etc) were self-reported, recorded with standard, validated instruments.

Question 2 – Qualitative studies excluded on critical appraisal

1. Cacciatore, J., K. Erlandsson, et al. (2013). Fatherhood and suffering: a qualitative exploration of Swedish men's experiences of care after the death of a baby.

Reason for exclusion: The methodology of the study was reported insufficiently to provide rigorous and valid conclusions regarding participants’ experiences. While a content analysis has been conducted, the detail is insufficient to establish whether enough detail has been gathered from participants. The philosophical perspective was unstated and the research methodology underpinning the study was unclear. The congruence between the research methodology and research questions/objectives as well as the representation and analysis of data was also unclear. Congruity between the research methodology and interpretation of results was unclear, as were the conclusions of the report as based upon the analysis. There was no statement locating the researchers culturally or theoretically and no statement addressing the influence of the researcher on the research, and vice-versa.

2. Lockwood, S. and I. C. Lewis (1980). Management of grieving after stillbirth.

Reason for exclusion: No detail provided regarding the study’s methodology and as such reliable and valid conclusions may not be reached from the results of the study. Published in 1980 and therefore too long ago to feasibly contact authors to provide additional detail to establish rigour.

Question 2 – Qualitative studies that could not be retrieved

3. Fenstermacher, K.H. (2011). Perinatal loss and bereavement in non-Hispanic Black adolescents. Ph.D. thesis, Pennsylvania State University.


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4. Griffin, C.M. (2012). 'It's a birth not a procedure: An ethnographic study of intrauterine fetal death in a labor and delivery unit of an American hospital setting', Ph.D. thesis, Wayne State University.


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APPENDIX VI: FINDINGS AND SUPPORTING ILLUSTRATIONS

*M = mother/ F = Father / A = Author / P = Parent / HCP = Health Care Professional ** U = Unequivocal / C = Credible

Avelin, P., Erlandsson, K. ‘Swedish Parents’ Experiences of Parenthood and the Need for Support to Siblings When a Baby is Stillborn’. BIRTH. 2011; 38(2): 150-158.

No. Finding Illustration

1 Caring and guidance as a basis: when professionals did not give enough support and information about the needs of siblings, parents felt abandoned.

“We became a little upset because we asked for help: what do we say to our son? But there was no-one that helped us. We had to deal with is ourselves. When Eric (the sibling) came, the first think he said when he saw the baby was ‘Why are her eyes closed?’ and I became very sad and started to cry, and he wondered why I was crying and then I turned for help to the staff present. ‘What am I supposed to say now?’ But no one replied, so I told Eric that Saga (the stillborn) had been sick and that she was not alive." (Mother of four-year of sibling). pg. 153

U

2 Meeting with the stillborn: The parents described the importance of informing the siblings themselves about the stillbirth, so that they could take care of the siblings’ reactions and questions before their meeting.

“And when we arrived (at the hospital), we received the information (that the baby was dead) and we chose to spend the night at home, and when we came home the first thing we did was to tell Tomas and Oeter that their little sister was dead. We felt very strongly that it was important that we told them about this ourselves.” (Mother of 6 and 10 year old siblings). pg. 153

U

3 Meeting with the stillborn: Siblings of all ages experienced the stillborn brother or sister as lifelike by seeing, holding, and touching the baby.

“I believe it is important, if possible, that the siblings can meet their dead sister or brother even if it is hard…just like it is important for parents who do not always want to receive their stillborn. How is it possible to mourn a baby you have not met?” (Mother of 13 and 16 year old siblings) pg. 153

U

Bonnette, S & Broom A. ‘On grief, fathering and the male role in men’s accounts of stillbirth’. Journal of Sociology. 2011; 48(3): 248-265


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1 Fathering a stillborn baby and the ongoing relationship: The time post-stillbirth was a critical phase in the men’s experiences. They each spent numerous hours with their stillborn child, holding, bathing, talking to and touching, often visiting them over several days. The holding of their baby allowed the fathers to realize that baby was their child and various rituals, such as talking, bathing, playing, touching and photographing their baby were significant in allowing the men to reconcile the stillbirth experience with their fathering identity.

“ That was absolutely an amazing time because I’ll always look back at it as one of the most valuable short pieces of time I’ve ever had in my life, that I got to spend with her. That time was the most valuable time in my life, I could probably pinpoint at that hour, the most special time in my life, over our wedding, over anything”. (F) pg. 256

“We just sort of spent hours with him … just talked to him, held him. Just played with his fingers and toes and things and cried”. (F) pg. 256

“Once she was there [funeral home] we went and visited her there every day for a week before the funeral … we read books to her, read our [favourite] book to her and stuff.” (F) pg. 256

“He looked nice and that was a real good positive I think for me. We got to clothe him and bathe him and washed him down.” (F) pg. 256

U

Corbet-Owen, C. and Kruger L.-M. ‘The Health System and Emotional Care: Validating the Many Meanings of Spontaneous Pregnancy Loss. Families, Systems and Health. 2001; 19(4): 411-427


1 Collaboration and negotiation: the importance of collaboration and negotiation between medical personnel and patients in medical decision-making.

“How DARE he (the doctor) decide that I can’t hold that baby and that I won’t be able to cope with what the baby looked like?” (M) pg. 420

“SHE at that point had made her decision. I don’t feel that she had any right to make that decision for us”. (M) pg. 420

U

2 Knowledge and information: when explanations were given and the implications for various decisions were discussed, participants felt more in control.

…some, but not all physician are often reluctant to provide information:

“He did not explain to me why I have miscarriages” (M) pg. 420

“He totally, he analysed the whole physical thing…what had went wrong and you know why it had happened and all the questions that we asked, he explained everything…” (M) pg. 420

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3 Knowledge and information: In the absence of reassurance from medical personnel, guilt, which appears to be the most difficult emotion for women to resolve without help, prevails.

“…explanation of why that baby died would REALLY have helped, even if he made something up…did I do anything to cause the baby to die…?” (M) pg. 420-421

“There is no explanation…all of those questions inside of me…where have I failed?” (M) pg. 421

U

4 Sensitive and personal care: Validating women’s experiences and collaborative care can only take place if women are treated with sensitivity and humanity.

“I can’t really put any blame – other than the insensitivity from that nurse and maybe the doctor… he was so offhand… it would have helped to have a caring doctor… Nurses need to be VERY sensitive.” (M) pg. 421

“My initial experience…was hideous… TOTALLY unsympathetic… start(ed) screaming and shouting at me to calm down and control myself because otherwise I would CAUSE the miscarriage… Nightmare.” (M) pg. 421

“They didn’t care…their attention was with the other mothers who had babies… just always hurried with me.” (M) pg. 421

“Cold…nobody bothered.” (M) pg. 421

U

5 Sensitive and personal care: when medical professionals reacted with humanity and warmth, it made a big difference to participants.

“…the nurses grieved with me and couple of them, really were very heartbroken.” (M) pg. 421

“…all the nurses… they cared for me. They cared for me… they knew what I was going through… EXCELLEND gynaecologist… a HUMAN BEING… like a father.” (M) pg. 421

U

6 Sensitive and personal care: When they were made to feel they were special patients, participants felt even more validated.

“…the comfort he gave me… (he) said to the nurses: “…special treatment for this one.” (M) pg. 421

“He was a very good doctor, he was just specially there for women who have had a miscarriage before. Normal women go to the clinic but there are special women who have to go to him at the hospital.” (M) pg. 421

“I’ll never forget this, he left a fertility patient in the middle of a pick-up to do the suture. He said having been through what he had been through with me, he just wasn’t happy to let anybody else do it.” (M) pg. 421

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Downe, S., Schmidt, E., Kingdon, C., Heazell A.E.P. ‘Bereaved parents’ experience of stillbirth in UK hospitals: a qualitative interview study. BMJ Open. 2013; 3:e002237


1 Parents’ experiences (enduring and multiple loss): the pressure to make decisions, at a time when [parents] felt completely psychologically incapacitated, and the perceived inability of professionals to notice their state of mind or respond to their needs and requests led respondents to experience intense frustration.

Ten parents remarked that no matter how hard they tried, they could not seem to absorb the information that midwives, doctors and administrators shared. This led to a feeling of psychological distance from the events that were happening, from family and friends, and from the staff who were active in those events. (A) pg. 3

“They only left him with me for about an hour. Then they just took him away. I was begging them not to take my baby.” pg. 5

“I’ve never been so angry.” pg. 5

C

2 Parents’ needs: making those irretrievable moments precious: The quality of memories was the anchor point for a good or a bad experience, with long-term and, often, unexpected consequences. Ensuring good memories and the collection of meaningful physical mementos was one of the most important things staff could do to help parents to deal with their situation.

“You’ve got to cram a lifetime of memories into a few hours.” pg. 5

“Professionals must realise that this is the only time parents are going to spend with their child.” pg. 5

“We were so scared, we never did, we never sort of unwrapped her. Se we never had that change to unwrap her and look at her hands. And it’s something I bitterly regret. That we never did there and then.” pg. 5

C

3 Parents’ needs: making those irretrievable moments precious: respectful handling of the baby once it was born

“Even though she wasn’t breathing and she didn’t open her eyes, she [the midwife] still said you’ve got a beautiful baby girl. It just meant the world.” pg. 5

“They [hospital staff] talked to me with respect. They treated the baby with respect. I wasn’t just a woman giving birth. I was a woman who was giving birth under horrific circumstances.” pg. 5

C

4 Parents’ needs: making those irretrievable moments precious: Good memories were also formed by regular and individualised updates and information as the pregnancy and labour progressed, if the death of the baby was known about before the birth; as much time

“I wish someone had said to me in those first few hours. Even if you don’t want to see her now, you can see her in an hour or two. Or in a day or so… I was left to believe because I said I wasn’t ready to see her, that was final.” pg.

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as possible for parents to make decisions. 5

5 Parents’ needs: making those irretrievable moments precious: Mothers recounted a desire to hold the baby, although from person to person, there were varying preferences for the timing of this. This is an area where some parents felt that healthcare staff could be more assertive.

“I understand that it’s quite traumatic having a dead body put onto you. But that body comes out warm, and it’s still yours, it’s still your baby. And it’s still something that you have formed a relationship with inside”. pg. 5

C

6 Parents’ needs: making those irretrievable moments precious: Where parents encountered genuine, authentic caring (caritas), it provided a sense of being protected from the raw horror of what had happened to them around the time of birth.

When professionals seized the only opportunity they would have to communicate information about the stillbirth, and used it to provide emotional support to the bereaved parents, this was seen as genuinely caring. Often, this was enacted in the small gestures made by professionals that authenticated their sympathetic engagement. Additionally, parents placed a very high value on professionals who overtly acknowledged their baby’s existence as a much loved child. Small gestures that featured strongly in parents memories included a hand to hold, hugs and caring touch, staff that sat next to them, and sustained eye contact. Parents were generally very touched by the moist eyes and apparent upset shown by professionals of all types, ranging from community midwives to hospital midwives, general practitioners to obstetric consultants, sonographers to chaplains. (A) pg. 6

C

7 Parents’ needs: making those irretrievable moments precious: Upon diagnosis of their stillbirth, parents found themselves facing the unknown. They needed guidance from professionals to navigate the unforeseen circumstances of their child’s birth. Although parents had no power to decide about the ultimate outcome of the birth, they appreciated being able to make incremental choices about the process.

…some mothers appreciated being able to influence the timing of induction of labour and where they would wait for labour to start. Parents also high-lighted their need for guidance about what would occur after the birth of their baby and some appreciated having options on procedures such as the father cutting the cord or washing and dressing the baby. (A) pg. 6

C

8 Parents’ needs: making those irretrievable moments precious: Women who had an antenatal diagnosis that their baby had died reported that they had a strong desire for information relating to what was likely to happen during their labour and birth, at each stage of induction, labour and delivery. They needed professionals to be forthcoming when describing the likely physical deterioration of

…those who reported being well informed about this seemed to be less alarmed when deterioration had indeed occurred. Conversely, in cases where parents were not aware of the physical deterioration they would observe, they were very upset when they noticed unexpected changes in their baby’s appearance. (A) pg. 6

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the baby by the time of the birth

9 Parents’ needs: making those irretrievable moments precious: most emphasized the importance of discussions and accurate information about maternal and child blood tests, placental investigations, postmortem examination and any other tests that could be conducted.

“Just before I went into delivery, they started talking about a post-mortem. We were discouraged by the midwives who were telling us that it was a pointless activity. It was prolonging the agony before you could actually say goodbye to your baby. But I know I would have made a different decision today if I had been talked to in the right was and explained how it could help.” pg. 5

Fifteen parents expressed a strong drive to find out why their baby died. Ten of these had had a postmortem. Some parents voiced a clear sense of frustration and injustice at having their decisions influenced by insufficient or inaccurate information provided by professionals. Respondents also reported a need for healthcare providers to pay attention to their specific postpartum information needs, in terms of advice on physical issues that they would face postpartum, such as lactation suppression, and in terms of practical steps, such as how to register the baby’s birth and how to arrange for a funeral. Some of this information was hard to hear and even harder to assimilate. Despite this, in general, parents believed that they coped better when professionals were forthcoming with candid information during the hospital stay, as long as this was given to them at an appropriate time, and in ways that were tailored to their specific capacity to understand and respond to it. (A) pg. 6

C

10 (Lack of) Care in the caring: The best care possible to the worst imaginable: minimal regard for [parents’] needs and emotions shown by caregivers.

"The delivery was just awful from beginning to end. They almost treated me like ‘The Woman With The Dead Baby’ [mother’s emphasis]. There was no sympathy. When I asked to see a doctor, this particular doctor came in and said ’we’re very busy.’ And his exact words, I’ll never forget them ’Well, with all due respect, your baby’s dead already.’ Which was just the most awful thing you could say." pg. 7

U

11 (Lack of) Care in the caring: practices that disrupted or damaged the recovery of parents.

"We asked for hospital notes and they came addressed to Eve. I did e-mail them and said I can’t phone you because I can’t tell you what you’ve done. You’ve addressed my notes to my daughter who’s died." pg. 7

"She gave me a book, a parenting book. And she said "this is the only thing I

U


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can give you. The information is at the back and I didn’t have time to print it." It was all about new parents." pg. 7

12 (Lack of) Care in the caring: respondents reported excellent, empathic, competent, respectful, humane, skilled and emotionally intelligent care.

"She [the midwife] made me feel incredibly proud. A natural reaction after just giving birth is re-living the birth and wanting to talk about the birth experience. It sounds odd, but because I’d had such a good birth, I felt that I could behave like a normal mother. I could talk about that experience as a normal labour to close family. That was really important to acknowledge Zoe in a way." pg. 7

"The way she [midwife] spoke to me, I cannot think of a word to describe it. I mean, my mum was there, but it was like having another mum." pg. 7

U

Dyson, L and While, A. The ‘long shadow’ of perinatal bereavement. British Journal of Community Nursing. 2008; 3(9): 432-439


1 Diagnosis: Parents demonstrated that at this stage they were very sensitive to, and remembered, the remarks of staff and also whether or not they had been supportive.

“But it was almost like well…that’s it, end of story, closed, I’m going to leave you now, or whatever, it’s um…it’s the baby’s life – that’s the end of it…I didn’t feel that he was feeling how we would feel when he said it” pg. 433

U

2 Labour: [some women] appreciated the staff’s sensitivity in accepting and responding to their feelings as they experienced them. It was important for the women to feel able to express themselves naturally and not to be expected to feel or behave in a certain way.

“I said to (my husband) when…the epidural had gone in…well that’s the worst part over with now, and I think he thought that was quite strange because…(he thought) seeing the baby might be more distressing, but actually at that point as far as I was concerned the pain was over. And strangely enough, at that point I was actually looking forward to seeing the baby” pg. 434

C

3 Lack of knowledge: The mothers frequently expressed their lack of knowledge about stillbirth and how vulnerable it made them feel. Healthcare professionals need to understand how much information individual parents need.

“I just thought well, now what?...there’s something inside me that’s dead, and then you say well its my baby and you don’t want it to come out. Didn’t even occur to me that you have to give birth, I’d never come across a stillbirth before” pg. 434

U

4 Saying goodbye: The mother’s regrets usually concerned not having spent enough time with their babies. Other regrets related to this

“…they brought him back in a blue baby grow and a hat, they put a hat on him all the time so I never even saw his head…it’s something I didn’t think of at the

U


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were that they had not ‘explored’ the baby. time…there’s loads of things I’d like to do now and I can’t…I’d have liked to just give him loads of cuddles…” pg. 435

5 Saying goodbye: Midwifery staff need to be particularly sensitive to the mother’s needs during this time

One respondent did not have the intimate support of a partner, and said she would have valued someone to encourage her to have had more physical contact with her baby. Other parents were more confident about handling their babies and valued being allowed to spend time alone with them. (A) pg. 435

C

6

Saying goodbye: Good communication is essential in order for the midwife to be sure of how parents feel about handling the baby at this time.

Parents felt that it helped to be reassured about holding the baby, and also to be given permission to explore him/her. They also appreciated a sensitive description of how the baby might look, e.g. ‘Her skin might be peeling a bit’. (A) pg. 435

C

7 Saying goodbye: Parents differed in the way in which they wanted to physically ‘part’ with their baby for the first time.

Parents constructed their own ways of doing this, e.g. one mother felt that she had to ‘hand the baby over’ to someone, in this case, the midwife. Other parents wanted to ‘leave’ their baby in the room where they had stayed at the hospital – each parent had his/her own individual way of coping with the situation. (A) pg. 435

C

8 Helpful things: The support of a significant other during labour was viewed as the most helpful thing during this time.

The mothers emphasized how valuable the support of their partners had been, and stressed the importance of having their partners to stay with them overnight. One woman’s parents were her main support during the labour. (A) pg. 435

C

9 Helpful things: Honesty and genuineness were considered important qualities for staff in this situation to have. Parents wanted straightforward, honest answers to their questions and appreciated staff who were willing to share the experience and their own emotions with them.

“The comparison of the deliveries of Justin and the twins were night and day. And I think it had a lot to do with those very caring, tender midwives…who could not precent what was happening…but could essentially offer to be there an[sic] use their best knowledge…but more than that, they gave me the human side of them…it was just a lot of caring”. pg. 435

U

10 Helpful things: Information giving was viewed as being an important and helpful element of care, i.e. clear verbal explanations, repeated if necessary, and the information given in written form.

One set of parents were given an information leaflet about stillbirth to read during labour and cited this as one of the most helpful things. (A) pg. 436

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11 Helpful things: In some cases, other parents appreciated hearing the midwives’ memories and recollections of the baby and the birth.

“And I said how did the labour go? I mean it was such a fuzzy thing, and they could give me little parts which are the only thing we have to hold on to. We don’t have this tangible child. And I really appreciated that so much.” pg. 436

U

12 Helpful things: Photographs and various keepsakes such as locks of hair, wristbands, hand and footprints were always viewed as helpful.

In two cases, portrait photographs taken of the baby and were [sic] displayed in a prominent place in the living room of the parents’ house. Scan pictures were found to be particularly helpful as this formed part of the memory of the baby when he/she was alive. One woman found her antenatal notes useful as this was proof of her baby’s live existence. One woman’s father took a video of her with the baby after he was born which she found particularly helpful… (A) pg. 436

C

13 Helpful things: Women often commented that it helped when professionals (and others) acknowledged the reality of their loss.

“…before we left I said when I get pregnant again will I say this is my second? And she looked at me surprised and said, “Oh, of course you will.” It was lovely to hear somebody say that”. pg. 436

U

14 Unhelpful things: the dominant unhelpful approach would be classed as the lack of professional skill and uncertainty, usually in relation to communication and news-breaking skills.

It is worth remembering that what professionals say to parents at this vulnerable time may remain with them forever. Most of the study sample alluded to the exact words used by healthcare professionals who made unhelpful comments. (A) pg. 436

C

15 Unhelpful things: An important theme was what the midwives implied by what they said or did.

One mother felt that she would have liked to have been with other people, however, she was not asked if she wanted to be on the ward and was allocated a single room. This meant that she avoided other women because she believed that this was what was expected of her: “I just wanted to go and watch telly with everybody else, not sit in a room on my own like they made me do…sitting on my own all night wasn’t very nice, I wanted to go to the toilet…and I had to go careful with all those pregnant people walking around. I had to try and dodge them”. pg. 436-437

U

16 Unhelpful things: Another unhelpful approach was the tendency to ritualize the guidelines.

One women [sic] found the baby’s name tags (which had not been worn) in an envelope. It may be easy for healthcare professionals to ‘hide’ behind ‘doing’, and it is important to realize that there is a reason for doing something other than the fact that it is on the checklist. (A). pg. 437

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17 [Subsequent pregnancies]: [Women] viewed their postnatal experiences as being an important part of the whole experience of stillbirth. During pregnancy, labour and also in the postnatal period women repeatedly expressed fears that their baby was going to die.

“...the end (of the pregnancy) was very, very difficult, with her…and everyday was a battle really to…not get swamped up with the dear that she could die”. pg. 437

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18 [Subsequent pregnancies]: All the ‘helpful things’ mothers talked about in relation to subsequent pregnancies concerned support, e.g. support from groups such as that run by the hospital or the Stillbirth and Neonatal Death Society – midwives were said to be an invaluable source of support. Midwives were appreciated for gently approaching the subject, being prepared to talk about it and also for being honest and not giving false assurance.

“I just wish(ed) I knew everything was going to be OK. She (the midwife) would never say oh it will be. I think if she had it would have been difficult to take anything else that she said very seriously”. pg. 437

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19 [Subsequent pregnancies]: The mothers identified the corresponding time at which the baby had died as the most difficult time in their subsequent pregnancies. They expressed a need for professionals to be aware of their bereavement and to provide them with support during this time.

“Just to be aware that the woman’s had a miscarriage for a start, and just sometimes I felt that they didn’t really know…(if) they sat you down at the beginning and said…I understand that you’ve had a miscarriage before, how are you feeling at the moment? Just want you to know that we’re here for you. Maybe you can make a note on the calendar of when the time was when they lost before…that sort of thing…and perhaps calling round in that week”. pg. 437

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20 [Subsequent pregnancies] “They certainly have to be very understanding about every anxiety I have. They

mustn’t doubt me when I ask, I say perhaps unreasonable things…I need to be able to…at any time I want I can just turn up at (the hospital)and say look I’m not happy…I will need a midwife to say to me, OK lets go and have a look…you’re all right to come back any time”. pg. 437-438

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Hsu MT, Tseng YF, Banks JM, Kuo LL. Interpretations of stillbirth. Journal of advanced nursing. 2004;47(4):408-16.


1 (T)o provide appropriate care, nurses need to be sensitive to the ways in which personal values interact with culture, especially one that emphasizes family continuity and child-raising as core values

To help the mothers of stillborn babies overcome self-blame, nurses need to be alert to mothers’ reactions following this trauma. pg. 414 (A)

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and essential female responsibilities.

2 An appropriate nursing care plan might emphasize psychological

support for these women, their husbands and members of their

immediate families.

nurses should attempt to address excessive guilt by reassuring a bereaved mother that she successfully met her prenatal responsibilities, and that the outcome of pregnancy was not a result of incompetence. Mothers should be encouraged to express their feelings of loss in ways that allow them to reconstruct meanings of death and to begin healing. pg. 414 (A)

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3 Making arrangements for a private, informal meeting may facilitate bonding among members of a bereaved woman’s family.

Talking about an unborn baby may infuse a sense of a separate identity that provides mothers with primary, if symbolic, figures to mourn. The presence of a supportive nurse is especially important in a culture that prohibits public expressions of personal grief, thus rendering impossible the sharing of emotions with family or friends in a natural setting. pg. 414 (A)

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4 In a patrilineal culture that emphasizes family continuity via fertile daughters-in-law, nurses need to be especially sympathetic to the shattered lives of bereaved mothers.

Nursing efforts should focus on reintegrating the self through narrative therapy in order to empower mothers and to assist their movement toward finding new meaning in both death and life. Equally important is providing opportunities for interaction with other women who have gone through the same experience. pg. 414 (A)

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Hsu MT, Tseng YF, Kuo LL. Transforming loss: Taiwanese women's adaptation to stillbirth. Journal of advanced nursing. 2002;40(4):387-95.


1 (G)rief as a health issue as well as a process of socioculturally influenced adaptation…professional nurses need to understand the inner desire of these women for catharsis, and to learn how to initiate tactfully therapeutic relationships with hospitalized mothers. Mothers need to be encouraged, but not required, to talk about their babies, perhaps by name, in order to establish objects and personalities that can be mourned.

(R)ecognizing the existence of a stillborn baby is essential to a woman’s healing. Although a strong taboo exists among Taiwanese against talking about death, the participating mothers clearly had a strong desire to discuss their babies with the researchers once a comfortable rapport had been established. pg. 393 (A)

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2 Attempts to establish a sense of partnership between nurses and their patients may be of benefit to the mothers of stillborn children

Even such simple statements as ‘You did your best’ may help ease the suffering associated with self-blame and guilt. pg. 393 (A)

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during the earliest stage of their searches for new meaning.

Huberty JL, Coleman J, Rolfsmeyer K, Wu S. A qualitative study exploring women's beliefs about physical activity after stillbirth. BMC pregnancy and childbirth. 2014;14(1):26.


1 Health care providers are not providing information (e.g., exercise prescription, programming) relative to physical activity for women who have experienced loss.

“I think it would have been easier if my doctor gave me information maybe that would’ve helped me motivate a little bit” pg. 6 (M)

“Wish my health care provider would have provided more information about physical activity” pg. 6 (M)

Women felt that physical activity was beneficial for their mental and emotional health and was a means of coping or therapy. Physical activity may provide an avenue for women to manage depressive symptoms and take care of themselves outside of a hospital or health care provider setting…pg. 7 (A)

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Kelley MC, Trinidad SB. Silent loss and the clinical encounter: Parents' and physicians' experiences of stillbirth-a qualitative analysis. BMC pregnancy and childbirth. 2012;12:137.


1 [From diagnosis to delivery, events are confusing and shocking: “No one tells you—you still have to deliver your baby”]

Disorientation, shock, and a perceived lack of communication from the clinical team made a difficult situation harder to bear for several parents…

“It was just so confusing. They drug you, and I think that is a huge part of it. You are on these drugs. I wake up, and first they tell me they are working on the baby. I wake up again, and they tell me that she has died. I can remember feeling a sense of disbelief, like, “No way, this is a nightmare.” pg. 4 (M)

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Stillbirth is often confirmed by ultrasound; several parents reported encounters with technicians who were extremely uncomfortable giving or confirming the news that their baby had died.

“I had a midwife, so when I had a stress test and they couldn’t find the heartbeat, they referred me to a doctor. We had to wait through other patients before he ever came to us. He never looked us in the face.

He did all the measurements. My husband finally had to say, “Is she alive?” pg. 4 (M)(Doctor)

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While partly due to the suddenness and unexpected nature of having a stillbirth, others felt that physicians purposely were not telling them why their baby had died.

“They definitely closed ranks, the doctors did. There was a shutdown on information. The nurses were fabulous, our saving grace. They encouraged us to take pictures. I had her for 24 hours and that was great, but the doctors were—it was like some kind of code of silence. You ask your doctor what happened. They say, “I don’t know.” [.. .] There was this silence.

I could just tell there was something going on that I wasn’t privy to.” pg. 4 (M)(Nurses, Doctors)

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Parents who experienced stillbirth wanted to understand the cause of their child’s death and found it frustrating when no answers could be given.

“Both the midwife and doctor pretty much, I feel, blew us off—“These things happen. Chances of this happening again are slim.” Then when you go home and do the research, there was testing that could have been done before I delivered. But it was testing I didn’t know about, wasn’t offered, so there could have been a cause; we don’t know the cause. An autopsy didn’t show anything; the cord was fine; the placenta was perfect. I just feel like we were blown off with, “These things happen.” pg. 5 (M)(Midwife, Doctors)

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(P)arent participants who were also health care professionals requested an autopsy…

“We did opt to do the autopsy after the funeral and had the funeral right there at the chapel in the hospital. Of course, they found nothing. There were no answers. Looking back on it I’m glad I did it.” pg. 5 (M – HP)

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6 [The typical labor and delivery environment is not designed to support parents during a stillbirth: “I could hear other babies crying”]

Delivery areas on obstetric units are designed to welcome new babies, not to mourn babies who have died.

Delivery rooms are not typically set up to provide space or privacy for parents who have lost a child before or during delivery, and the culture and milieu of labor and delivery is to give birth. pg. 5 (A)

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Several mothers reported that hearing noises of the bustling activity and other births around them added to their suffering.

“They left me in the same floor as everybody else. You hear babies crying. I mean, that was horrible. They put a sticker on your door. I was like, “What is that for?” They’re like, “Well, it’s to let everybody know that you don’t have a baby here.” It was just horrible.” pg 6 (M)

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The default assumption that all parents in the labor and delivery suite are celebrating the joyous occasion of a healthy birth can be devastating for parents who have a stillbirth…

One parent reported being transferred to the geriatric ward where the staff thought she would have more quiet and privacy—a well-meaning attempt to address the lack of a private space on OB. However, the result was that the ward staff wondered what she was doing there, and the patient had to explain, several times, that she had been moved out of OB because she had had a stillbirth. pg. 6 (A)

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9 [The typical labor and delivery environment is not designed to

support parents during a stillbirth: “I could hear other babies

crying”]

“They didn’t put a sticker on my door, so they kept coming in—“Do you have your baby?” That was horrible because they came in two or three times. They came in to take pictures of him, thinking he was alive. I don’t think they knew what to do—it was horrible.” (M)

“The nurse kept coming by and saying, “What are you hoping for, a girl or a boy?” So they weren’t even reading my chart about the baby having already died. Then I was in a room with all of the women delivering babies, because it was a smaller hospital.” (M)

“The stupid lullaby that plays every time a baby is born—we could still hear all of that. We had a private room, but we could hear the chirp lullaby chiming away all the time.” pg. 6 (M)

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(P)arents described the painful ritual of parents leaving the hospital or delivery suite without a baby.

“One of the hardest things ever was walking out of the hospital empty handed. Somebody had brought me a little potted flower basket and I carried that out and I was so glad I had just that. It’s just that feeling of walking out empty handed. Of course, what I really wanted was a baby to walk out with.” pg. 6 (M)

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11 [Clinician empathy and rituals to honor a baby’s death are important to parents: “They encouraged us to take pictures—I’m glad we did”]

(G)estures that two parents found to be meaningful and

“I had a wonderful doctor. I felt completely taken care of and I was sent home with a huge packet of information. Stuff was mailed to me that the hospital had set up. A pastor came and dedicated him. A social worker came in and talked to us and told us kind of what was going to happen to us as a human in

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supportive… grief.” pg. 6 (M)


(P)ositive accounts of the hospital experience included thoughtful gestures of compassion and support, such as giving parents time to hold their baby, offering to photograph their child, and offering to bathe and dress the child.

“It was wonderful as far as the staff. Somebody told us that we would appreciate having pictures. It would never occur to me to take pictures of him. We took lots of pictures and I held him for about 3 days. At different times they would bring him in and I held him. The last day I put a diaper on him and dressed him in a nice little outfit. He was buried. I just thought they were wonderful.” pg. 6 (M)

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(T)he importance of considering the needs of both parents, as a couple and as individuals…

For one couple, the staff assumed that the mother needed rest and asked the father whether he wanted to bathe and dress the infant. The mother mentioned bathing and dressing as very positive gestures but felt left out of an opportunity to create memories with her child… “I think they were concerned with me resting. My husband went with them to dress her. He got to bathe her but it was never offered to me to bathe her.” pg. 6 (A)(M)

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Not all parents found providers’ well intentioned gestures, or their timing, comforting. Others appreciated the gestures only much later

“After my daughter was born and they told me she was dead, I didn’t want to see her. I didn’t want to see what a dead baby looked like. They basically, for lack of a better word, forced me to do it. I had nurses in there. I was hysterical. They said, “You have to hold her and say goodbye to her while she is still warm. Don’t wait for her to be put in the refrigerator. Don’t go on 10 years and look back and say you never held her, you never saw her.” I was so angry with them. I was yelling, but then I look back, that was the crucial event that they did to not only preserve future memories but for me to get through it (...) They were right.” (M)

“The tech offered to have me look at the ultrasound. I hit his hand away. Why do I want to look at a picture of him on the ultrasound—so I don’t see the blood flowing and don’t see the heart beating? It was very harsh. I think maybe if we are treated more like shock patients. You go into a state of shock.” pg. 7 (M)

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Most meaningful for all parents were the physicians and nurses who

“One of the mothers who reported an otherwise terrible experience at the hospital remarked that what meant the

most was a nurse who sat with her and told her she had lost a baby too: “She

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took time to sit with them, look them in the eye, and be present with them in their sadness.

was personal with us, so we actually go and visit with her every year on the anniversary of our daughter’s death.” pg. 7 (M)(A)


All parents valued eye contact, empathy, and emotional engagement from their physicians. One mother was very moved by her physician’s grief.

“My doctor was very compassionate and looked me in the face and said, “I’m sorry, your baby has died.” I’ve heard a lot of stories about physicians that didn’t look their patients in the eye. I think that is something that was important to me.” pg. 7 (M)

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(P)hysician’s instincts or training may have led him to attempt to protect the patient from his emotional reaction, the patient instead found the reaction to be deeply human and a sign of shared grief over a terrible loss.

“I was told my doctor cried. He stepped out of the room and cried… I just felt he was very compassionate.” pg. 7 (M)

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Parents who were offered to have a photograph of their baby taken appreciated this and said it was not something they would have thought of, but appreciated later. Others had handprints or footprints taken. One hospital offered a loss kit that included a blanket, footprint, handprint, and a camera. pg. 7 (A)

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19 [Grief following stillbirth is ambiguous: “My saddest memories are also the ones I cherish”]

Information and materials were typically offered by nurses or social workers. Only a few mothers in these groups were given referrals for counselling; most sought counselling or treatment on their own.

All of the parents felt largely on their own in identifying options for grief support and expressed a desire for more information and better resources. pg. 7-8 (A)

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20 [Grief following stillbirth is ambiguous: “My saddest memories are also the ones I cherish”]

Parents had different needs: some wished for immediate social

support, while others felt unable to talk about their experience for

Parents mentioned the value of social work referrals, information on counselling and parent support groups, as well as simple human compassion for their loss. They discussed…creating a mentorship program…(A)s guides for other women who experience stillbirth …they wished they had had at the time of losing their child, and as a way of helping them find meaning and value in

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some time. their own experience…

21 [What to say and not to say following a stillbirth: “Don’t say, ‘You are young—you can have another’”]

(W)ell-meaning but hurtful comments from clinicians who meant to be supportive but simply did not know what to say or do to offer comfort after a stillbirth.

(T)he most common and most hurtful comments were reassurances that they would have another baby.

“Don’t say, ‘You are young—you can have another.’” (M)

“In the midst of grief over the loss of your child, you’re just not thinking about your next pregnancy.” (M)

“It is beside the point to have another. I wanted that baby.” pg. 8 (A) (M)

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22 [What to say and not to say following a stillbirth: “Don’t say, ‘You are young—you can have another’”]

Overwhelmingly, mothers were deeply upset by comments that physicians intended to be reassuring - instead, such comments made the mothers feel as though the physicians did not appreciate that they had just lost a particular, loved baby, and that for a parent, there is no substitute for a dead child. pg. 8 (A)

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23 [Parents struggle with the silence and taboo that surrounds stillbirth: “I know it makes some people uncomfortable, but I want to talk about my daughter”]

… (T)he grief of stillbirth as being just as deep, painful, and significant as it would be to lose an infant who is born and survives a few weeks in intensive care.

…(S)ome health care providers—do not treat these deaths as equivalent. pg. 9-10 (A)

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Lee C. 'She was a person, she was here': The experience of late pregnancy loss in Australia. Journal of Reproductive and Infant Psychology. 2012;30(1):62-76.


1 [Pregnancy and diagnosis]

…(O)ne woman had obvious medical problems in advance of the pregnancy loss...Her responses conveyed a sense of bewilderment and deep distress

“…I had an ultrasound done but no-one would tell me what was wrong, […] A few days later I had another scan and it was the radiologist that told me I had a subchorionic haematoma haemorrhage, she couldn’t understand why they hadn’t told me. […] I was in emergency every week due to the haemorrhage growing bigger. I had a different Dr every time […] I was not happy with the way they went about my circumstance, they pretty much told me my baby was going to die anyway and in my opinion weren’t that

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fussed in doing everything they could to help me. I wanted to know what they could do for me and my baby and what I should do to try and help my situation; they just told me there was nothing that could be done. I have since found out there was plenty of things that could of been done they just couldn’t be bothered telling and helping me.” pg. 65 (M)


(S)everal (Health professionals) used language which the women did not understand.

“…we had no idea what the doctor was talking about as we had never heard of it [anencephaly]. All I remember the doctor say to us was NOT COMPATIBLE WITH LIFE. She then started talking about the legal side of things…we were so upset.” pg. 65 (M)(Doctor)

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Distress was affected by seemingly minor actions by health care staff…

“A doctor came and talked with me…she was trying to be sympathetic, she was telling me about how she had had several miscarriages before having her own children, so always hope etc. – and this was not the time to be talking about this with me.” pg. 65 (M) (Doctor)

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4 [Information and decision-making]

(S)ympathetic advice and assistance with decision-making.

“They were very good in that they gave us time to cry. We were told that we should go home and try and get our head around the situation and return the following day.[…] The following day Tricia [specialist midwife] was there to meet us and she explained everything that was going to happen. She answered all of my questions and was so gentle and caring toward me.” pg. 66 (M) (Midwife)

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…(L)ack of empathy… from…care provider.

“…(M)y private doctor couldn’t get rid of me soon enough…he was very reluctant to explain what the problem was and what it meant. The doctor I saw in Brisbane was brilliant, very caring and answered every question we had instead of dancing around it…Very understanding, honest and respectful.” pg. 66 (M)

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(S)upport offered by psychologists, counsellors, social workers.

“We were given multiple opportunities to talk to health professionals as well as referrals for later (which we took up). One lady was so good she helped us arrange the funeral and related details. We thought this was outstanding. The level of support we received was second to none.” pg. 66 (M)

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(C)ounselling was inappropriate or insensitive.

“... maybe an hour after we had had our scan...a social worker…was very rude...She had no emotion and basically said this happens all the time and that we can get the baby bonus [a family assistance payment]. Who wants to hear that when they have

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just been told that they won’t have a baby to take home!!! Very insensitive.” pg. 66 (M)(Social worker)

8 [Intervention]

(S)taff as supportive and informative… (F)eeling that it made the baby ‘more real’ and brought home to them their connection with the child and its material existence.

“…I can’t say enough for the staff at T [small

hospital in rural town]. They were all above and beyond, including Susan staying with me long after her shift ended, the obstetrician keeping me informed every step of the way, and they did not treat me like the lunatic that I was being. The understanding they offered. The pain relief they consulted me on. Everything they did was second- to-none CARE.” pg. 66-67 (M)(Obstetrician)

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9 [Intervention]

Exposure to babies and other pregnant women at this time was clearly distressing.

Some wrote positively of efforts that were made to avoid this…Others described a lack of sensitivity which increased their distress. (A)

“The nurses and doctors were very considerate to my requests and sensitive to my needs, I was taken to a private wing of the delivery ward away from other mothers so I wouldn’t hear babies’ cries …” (M)

“I know there really isn’t anywhere else for Mums who have lost or are losing their babies but it really is awful to be listening to other people’s babies cry when your precious one has died.” pg. 67 (M)

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10 [Intervention]

(R)espect, kindness and professionalism of health care providers during and immediately after labour…

“I had met the 2 midwives previously. The midwife who discovered our terrible news with me was there through the entire birth and was so kind and supportive. The other was there at the start of the labour induction and was back in the morning and collected all the little bits and pieces for our little memory boxes. Everyone was extremely kind and supportive.” pg. 67-68 (M)(midwives)

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11 [Immediately after birth]

(T)he way in which they and the stillborn baby were treated immediately after the birth. All had the choice to see, hold, bathe and dress their baby.

“Everyone […] had my interests at heart, they were very caring and supportive. They treated Jack with respect and dignity when dealing with him. […] I held him, sung to him, helped dress him. I was offered the opportunity to have him in my room until I was discharged.” pg. 68 (M)

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(I)dentifying the baby as part of the family… religious

“We both held our daughter immediately after her birth and my husband bathed her. The midwife took her while we slept for a few hours that night, and then brought her back in the next morning. We held her, both our parents and John’s sister held her,and

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ceremonies, as extremely important to them. we had a little name giving ceremony for her with a Catholic priest.” pg. 68 (M)


(I)nitially reluctant to see their babies because they knew they would not look normal.

“I didn’t want to see Adam when he was immediately born due to his skull and brain

missing, I was scared. […] I had to go for a D and C so before I went I wanted to see him and hold him, the staff were great about this. We got to see him as much as we wanted….” pg. 68 (M)

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Quite specific regrets.

“I think sometimes I wish I had held them both at the same time just to see what it felt like to have twins.” pg. 69 (M)

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(H)ealth care providers looked after the baby…

“They treated him as if he was a living baby, telling him how perfect and beautiful he was. They treated his body with respect and explained to him what they were doing (like when they dressed him, they explained to him that they wanted him to be warm and comfortable).” pg. 69 (M)

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16 [Memorials]

(H)ospitals…providing ‘memory boxes’ containing photographs and mementoes, which were received with gratitude, even by those who felt unable to look at them.

“The hospital did up a box for us, with photos, foot and hand prints, his little dress and a toy. I’m not really sure what else, I haven’t looked in the box, just not ready yet.” pg. 69 (M)

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17 [Reflections]

(C)are and compassion showed by staff.

“…(T)he birth of our babies was treated with the respect & dignity of any normal birth – maybe even more so.” pg. 69 (M)

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[The system] [ambiguities and definitional issues]

Several issues caused particular distress…attributed such issues to hospital policy and procedure…

Nadine, who stated that her pregnancy was at ‘19 weeks and 4 days’ when anencephaly was detected, found the maze of definitions particularly difficult. Both she and the professional staff were unsure as to how to label the event…

“(W)e were told of our options and taken up to the maternity ward for what they called a second trimester termination. They made me sign this [consent form for termination] which was disgusting as we did not want to terminate my pregnancy. I felt I had no choice, I was confused and still in shock. We were not terminating a healthy baby we were being induced early due to the fact our baby was sick and could

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not live…”

Because our selection criteria were based on legal notifications, we know that Nadine’s pregnancy loss was registered as a birth and death.

“We also discovered that babies under 20 weeks or 400 grams cannot have their births and deaths registered. DISGUSTING after giving birth and going through the nightmare we couldn’t even get her birth certificate. We cried and didn’t sleep or eat for days.” pg. 70 (M) (A)

19 [The system] [ambiguities and definitional issues]

U)nable to have the treatment she would

have preferred…

“…It was not helpful when we asked if we could not do the foeticide and just deliver her naturally but we couldn’t because of hospital procedure. I understand the reasonings but the foeticide was very traumatic. pg. 71 (M)

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20 [The system] [ambiguities and definitional issues]

… (P)referred her pregnancy outcome to be classified as a miscarriage…to have avoided the birth certificate and death certificate that brought comfort to others but alienated her.

“… I did not get the 20 week ultrasound […] I think it would have been classed as an abortion, if we had known she had already died. Because Ivanka was 25 weeks I now had to deal with the funeral, transport costs to T [country town], cremation, not what I needed at the time, guess I found the process very lonely …” pg. 71 (M)

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21 [Religion]

The need for both staff and patients to negotiate within the constraints of the Catholic system tended to raise problems for women with severe foetal abnormalities.

As there was no chance of survival for my baby, my pregnancy was deemed too risky to continue at 17 weeks. The only private hospital in R [large country town] is a Catholic one which all of the private obstetricians work from. […] it is against policy to perform any type of termination. Our private doctor explained that because of Qld Laws regarding termination after the first trimester and a current court case about the issue, it was very hard to find a hospital in Queensland that would agree to the procedure and we may have to travel to the ACT where medical termination is legal… I would have loved to have cuddled her and dressed her but could not stand anyone moving her as she was very swollen with fluid (she weighed 3 times what she should have), anytime anyone moved her, her head and neck wobbled like jelly and if someone touched her they left an indentation. Because she was so deformed we did not ask any family or friends if they wanted to see her and have not shown her photo to anyone except our son who is 2. […] I also really wish her hands and feet had not been so swollen and macerated so we could have had plaster casts done like we had done with our son when he was born. pg. 71-72 (M)


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22 [Religion] (contrasted with 21)

Both had babies with lethal congenital abnormalities and both were born at 23 weeks, but Eliza’s treatment appeared much more effective and sensitive.

“… a procedure had to be done called a foeticide – basically I know exactly when Emily died – however when they were doing it, they turned off all the equipment and my beautiful obs told me when she was going so I could pray for her … After the foeticide, I was given tablets that induce labour. We were told they typically take about 24 hours to work. Husband was allowed to stay the night which was very nice and we had just settled down to sleep when I was experiencing cramping, I rang the bell and it was very quick – Emily was born 30 mins after my first contraction. The midwife … cleaned her up and then we were given time alone with her.” pg. 72 (M)

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23 [Understandings: medical problem or baby]

(H)ealth professionals seemed to view the event primarily as a medical procedure to end a non-viable pregnancy, while the women and their partners viewed it as the birth and death of a child.

(H)ealth professionals’ focus on the physical process exacerbated…distress…Nadine’s induction at 19 weeks and 4 days, and consequent belief that her baby’s birth and death could not be registered, caused her severe and continuing distress...(U)sual methods for calculating gestational age have a margin of error of some weeks, it would have been a simple matter to re-estimate the gestational dates… (I)nduction could possibly have been delayed for a few days (compare Debbie’s seven-week delay)...T)hat neither of these seems to have been considered suggests a lack of awareness by health professionals of Nadine’s experience of the event as the birth and death of her child. pg. 73 (A)

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Malm MC, Rådestad I, Erlandsson K, Lindgren H. Waiting in no-man's-land - mothers' experiences before the induction of labour after their baby has died in utero. Sexual & reproductive healthcare : official journal of the Swedish Association of Midwives. 2011;2(2):51-5.


1 [Involuntary waiting]

(A)fter… they had received the news of their baby’s death they were left on their own or alone with their partner. Several mothers…felt abandoned and out of control in this situation.

‘‘They left me in that room and it felt strange that they left and did not stay with me. After they had gone I just sat there completely empty, staring at the walls.” pg. 53(M)

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(M)others…confused by the decision not to start induction since they had felt that they wanted to proceed and stop being pregnant as soon as possible.

‘‘I was not in a position to say what I wanted or did not want, the only thing I knew was that I did not want to wait any longer, I just wanted it over and done with.’’ pg. 53(M)

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While awaiting the induction the mothers had been advised to go back home…

(M)others described it as meaningless and involuntary.

‘‘He (the doctor) told me to go back home, go back home and tell your family, he said, and then come back tomorrow. I could not believe it, just go home like that.’’ pg. 53(M)

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4 [Handling the unimaginable]

(T)he baby as something strange that had been taking possession of their body. Giving birth to a dead baby was an unimaginable and bizarre thought...

‘‘I wanted nothing to do with it. It was absurd sitting there, aware of having a dead baby inside my body. I sat on the couch and put a big blanket over my belly. I did not want to see or touch it, I was completely uninterested.’’ (M)

‘‘I felt like I was hosting an alien inside me, I could not see it as my daughter, the whole situation was just so gruesome.’’ (M)

‘‘They might as well have put me on a guillotine and told me to lie down and let them cut my head off. It was terrible.’’ pg. 53 (M)

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5 [Broken expectations]

(M)others realized afterwards that they could have brought clothes and other items for the…baby and wished that someone had told them about this.

“I told my husband to take away everything that had anything to do with the baby, I did not realize she was going to wear any clothes, I did not know. I just wanted to get rid of everything that had to do with the baby. I had packed the baby suit and other things for her but I just did not want to keep anything that reminded of her at that time.’’ pg. 53 (M)

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6 [Broken expectations]

(S)till having the dead baby inside one’s body and being confronted with newborn babies in the women’s ward…experienced as an extremely difficult situation.

‘‘We passed by the place where the new babies were and that was really, really hard. It was terrible, this situation where I knew I would never be able to hold my baby like they were doing. My baby was dead, I wanted to cry out that my baby was dead!’’ pg. 53 (M)

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7 [Courage to face life]

When they had realized that the baby they were carrying was not the expected child, they had started asking about the possibility of another pregnancy.

‘‘The only thing we asked was if we could have other children, I think that was the only thing we wanted to know.’’ pg. 53 (M)

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O'Neill B. A father's grief: dealing with stillbirth. Nursing forum. 1998;33(4):33-7.


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1 [At the hospital]

((T)he father’s grief may be hidden from view…critical that he still receives attention, care, and nonjudgmental attitudes from staff.

I was clearly not as visibly affected as my wife. pg. 33-34 (F/A) U

2 [At the hospital]

We were moved back to the same room from the previous day. I appreciated this because I felt comfortable in it.

The nurses were efficient and excellent in handling the situation. Without their experience and guidance, I don’t know what we would have done. pg. 34 (F/A)

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3 [Role of the health professionals]

They did not rush us, they answered questions and educated us about our baby…The nurses in the delivery room were fantastic...This I feel was critical to helping us accept the situation and our child.

These nurses were educated and skilled in dealing with this situation, and this was invaluable. We did not know what to do, how to react, or what questions to ask. …(T)hey recognized and acknowledged her reality and facilitated this process. They wrapped her, encouraged us to hold her, asked what her name was, dressed her, took photos, and were there with us.

They did not push us, hurry us, or in any way make us feel inferior. pg. 34 and 36 (F/A)

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4 [Back home]

I appreciated the nurse visiting and checking up on my wife… (B)ut I felt the nurse was there for my wife and not for me.

I was upset that she appeared to be getting the attention, without anyone caring for me…They were able to talk, and she could provide support that I could not. I asked questions. pg 35 (F/A)

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… I remember their actions more than their words…

(T)heir hands-on approach to my wife was excellent. pg 35-36 (F/A) U


This nurse inflicted pain rather than relieving it… was cold, callous, and never once asked how we were.

(T)he nurse who cared for us during the night, administering pain and sleep relief…We felt like criminals at a time when we most needed support and safety and were trying to come to grips with the situation. . pg 36 (F/A)

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7 [Role of the health professionals] When discussing the autopsy report with the doctor, we felt like we were

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(N)ursing staff needs to be more aware of parents in this clearly difficult time… They can assist the grieving process or hinder it.

again placed at blame for the child’s death. We were told that there was no clear reason for Angel’s death, but comments like ”you’ll know next time” certainly helped us see that the blame was to be ours alone. This hurt us both, and made us wonder about whether we were to blame, especially after we had come to the decision that things sometimes just ”happen.” pg 36 (F/A)

Pullen S, Golden MA, Cacciatore J. "I'll never forget those cold words as long as I live": parent perceptions of death notification for stillbirth. Journal of social work in end-of-life & palliative care. 2012;8(4):339-55.


1 [Delay of news delivery ]

Following an initial indication of possible death such as a heartbeat not being detected during an ultrasound, a HCP may take additional measures to confirm the diagnosis, thus the process of diagnosing the baby’s death is delayed.

…(T)hree times as many parents perceiving HCP communication negatively reporting it compared to parents perceiving HCP communication positively. pg. 344 (A)

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2 [Expression of sympathy]

Expressions of sympathy, particularly simple statements such as “I’m sorry,” were reported by parents in both groups… (H)owever, compared to the negative group, parents perceiving HCP communication positively reported far more simple statements with intensifiers, such as “I’m so sorry,” and nonverbal expressions of sympathy, such as personal touch and the HCP expressing emotion. Nonverbal expressions of sympathy were rare in the negative group. pg. 344 (A)(P)

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3 [Communication of death]

Communication of death varied in that it could be: (a) direct—the parent was told that the baby had died; (b) indirect—HCPs communicated with each other regarding the baby’s lack of organ activity within hearing of the parent; (c) implied—a parent must infer a diagnosis from a HCP’s comment; and/or (d) nonverbal—a parent sees lack of fetal heartbeat on the monitor or the look on a HCP/family member’s face and knows the baby is dead.

Direct death notification was commonly reported in both groups and could be further described as: (a) blunt, using statements like “Your baby is dead”; (b) phrased in the negative, saying things like “There’s no heartbeat”; or (c) using idiomatic phrases like “Your baby is gone.” Indirect communication was rare in both groups. Parents who perceived HCP communication negatively more frequently reported implied statements of death such as, “Sometimes these things just happen,” and parents who perceived HCP communication positively reported more nonverbal communication of death; for example, a HCP asking the parent to look at the monitor as nonverbal reinforcement of

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verbal communication of death. pg. 344 (A) (P)

4 [Communication regarding options]

Parents perceiving HCP communication positively

(O)ffered delivery options…the HCP “nicely explained the options to me and we opted for an epidural and I gave birth vaginally,” (M)

or being given a medical explanation for why options were limited…“told me having a C-section would be ill-advised since they knew the baby was already gone and having one when it wasn’t necessary would only set a precedent for future pregnancies … .” pg. 345 (A) (P)

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5 [Communication regarding options] …(P)arents perceiving HCP communication negatively emphasized being told what the next step would be without explanation

“ … told [I] will be given pain relief but have to deliver normally.” pg. 345 (M) C

6 [Expressed uncertainty by HCP]

Parents who perceived HCP communication negatively reported that HCPs…

(a)… expressed uncertainty regarding the physical condition of the baby, with one HCP making a graphic statement regarding the baby’s head possibly detaching in utero; (b) expressed uncertainty regarding examination or treatment, such as one HCP being unsure how to operate the ultrasound machine; or (c) paired uncertainty with hopelessness, such as one HCP saying, “There is a 90% chance your baby is no longer alive.” pg. 345 (A) (P)

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Parents perceiving HCP communication positively reported uncertainty being paired with hopefulness…

“The baby might just be hiding from the monitor”; or … (T)he HCP expressed uncertainty about how to communicate death to the patient…“I don’t know how to tell you this.” pg. 345 (A) (P)

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Parents in both groups also reported that HCPs expressed uncertainty about why the baby died.

(P)arents who perceived HCP communication positively reported that the HCP also stated a possible cause or a desire to find a cause of death. pg. 345 (A) (P)

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9 [Noted Exit of HCP]

Parents who perceived HCP communication negatively noted that the HCP exited immediately following communication of death.

“He told me that sometimes these things just happen then left the room.” pg. 346 (P)

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10 [Suppression of Parent Emotion]

Parents who perceived death notification more negatively recalled that attempts were made to suppress their emotions.

(T)he HCP told her that someone would call her husband only “after you get control of yourself.” … HCPs prevented others from seeing their emotions. … (O)ne parent … was told to exit through a side door. pg. 346 (P)(A)

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11 [Support for Parent Emotion]

(T)ime/space for feelings

(E)ither with the HCP staying with

the parent during her emotional reaction or the HCP saying something like “he would let us have a few minutes alone to let this news sink in and that he’d come back and talk about ‘getting our little one here.’” pg. 346 (P)(A)

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(E)nlisting supportive others

(S)uch as calling a family member to be with the parent. pg. 346 (A) C


(V)alidation of feelings

(A)cknowledging that the death of a baby is emotionally devastating. pg. 346 (A)

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(R)elocation

(T)aking the patient someplace more private. Relocation was framed as being given the opportunity to grieve and supporting emotion, not a means of hiding the patient, as with emotional suppression. pg. 346-347 (A)

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15 [Information sharing]

(E)xplanation

“He answered any questions we had.” pg. 347 (P) C


(I)nformation about what to

expect or what the next steps were

“The delivery nurse was great

at explaining everything that I should expect.” pg. 347 (P)

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(C)ause of death

“She explained through the ultrasound, it looked like the baby knotted his cord by turning breech.” pg. 347 (P)

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18 [Information withholding] (A) HCP told her that her baby would be stillborn but she did not know what

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Parents who perceived HCP communication negatively …(D)id not receive information regarding the baby’s death or the information they needed to make important decisions.

that meant for her or the baby. She did not receive any information from the doctor or hospital about what to expect, about her choices for birth, or about social support in the aftermath of her loss. pg. 347 (A)

19 [Lack of continuity of care] …(L)ack of continuity of care, such as not seeing the HCP who delivered death

notification again... (T)he HCP may have come into the examination room, told the parent that the baby died, exited immediately, and avoided future contact with the parent. pg. 347 (A)

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20 [Presence of continuity of care] “The midwife remained with me at all times.” Parents also reported continuity

of care into the future. For example, one parent explained, “He gave us his personal pager and told us to … call him, no matter what time of night.” pg. 347 (P) (A)

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21 [Unique message elements]

(N)egative HCP communication…(I)solation

(B)eing left alone for a long period of time or being put in an isolated location. pg. 347 (A)

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(N)egative HCP communication…(B)lame

(T)he HCP suggesting the parent caused the baby’s death. pg. 347 (A) C


(N)egative HCP communication… (C)ontradiction of experience

(B)eing told that what the parent felt was

Impossible. pg. 347 (A)

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(N)egative HCP communication… (S)tillbirth being cast as beneficial

HCP saying he would include the case in a professional publication. pg. 347 (A) C


(N)egative HCP communication… (R)eassurance

(A)n ultrasound technician’s reassurance when she began to blame herself for the baby’s death contrasted with a physician’s “cold” communication…(T)he contrasting level of empathy between the technician and doctor contributed to negative perceptions. pg. 347-378 (A)

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Rådestad I, Malm MC, Lindgren H, Pettersson K, Larsson LL. Being alone in silence - Mothers' experiences upon confirmation of their baby's death in utero.


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Midwifery. 2013.


1 [Body language of staff]

...(A)ny delay in presenting verbal information triggers feelings of anxiety and makes them feel that they are being excluded, at least during the period of silence.

“I just got this feeling that now something is wrong. There is something they want. I asked several times if they wanted to say something but we just had to watch while they were looking. I probably asked a hundred times during those minutes, what they were doing and if something was wrong.” pg. e3 (M) (Clinicians during examination)

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2 [Confirmation of the death – Inconsiderate and unclear communication]

The verbal report of the baby's death was experienced by the mothers as being unclear and…presented in such a way as to indicate a lack of respect for the situation…

“Then I didn't really understand what they were saying…when they left I just stared at the walls, and asked myself where I am and what is this about?” pg. e3 (M) (Clinicians upon diagnosis)

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The information was sometimes presented bluntly and no further discussion of what was seen on the screen was encouraged.

“Then she said the heart doesn't beat, the baby is not alive. She held us then she said; I’m going to leave you for a while so you get some time alone. I grabbed her and said; what the hell you cannot leave us now. Now is when we need you! So, she stayed for a while.” pg. e3 (M) (Clinicians upon diagnosis)

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Some clinicians delegated the task of presenting the devastating news of the death to a colleague…not taking the responsibility for telling them that the baby was dead…

“They didn't say much. The doctor looked at me and she didn't say anything either, she left it to another doctor and she just mumbled.” pg. e3 (M) (Clinicians upon diagnosis)

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5 [Confirmation of the death – Elucidate information]

(M)others said they felt better able to comprehend what had happened through sharing the death of their baby with another person…who could explain and break the silence; a ‘stepwise’

“They really explained in detail what they were doing the whole time, and what the next step was. Here you can see this, and here you can see that, and then here's the heart and it doesn't beat.” pg. e3 (M) (Clinicians upon diagnosis)

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collaborative procedure created by the clinician.

Säflund K, Sjögren B, Wredling R. The role of caregivers after a stillbirth: views and experiences of parents. Birth (Berkeley, Calif). 2004;31(2):132-7.


1 [Support in Chaos]

“(S)upport in chaos” includes structured information and help in relieving despair.

When they realized that a normal delivery would occur, they stated that they needed information, advice, and support every step of the way with the stillborn baby. pg. 134 (A).

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(P)arents wanted structured information about meeting their baby, they sometimes received more information than they could absorb.

Sometimes the parents did not know how to cope with the baby, and what was best to do for the moment or for the future. pg. 134 (A).

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They wanted some moments to recover before receiving information about the next step.

“The midwife talked about the funeral and feelings associated with the funeral before the delivery. I thought it was negative and too early.” pg. 134 (M) (Midwife)

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(C)aregivers had an important role to play, and could both relieve their despair or worsen it…(I)f the staff assisted them during this time, the parents thought that their attachment to the baby was strengthened.

“The caregivers were very competent, skilled, warm, and accommodating as they instructed us and, at the same time, kind but firm. They guided us in making the right decisions. The brief moment with the baby was very poignant. I experienced my attachment to the baby as being strengthened in that moment. It is also the only time I wept over the baby’s death.” pg. 134 (F).

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5 [Support in Meeting with and Separating from the Baby]

The time they spent with their dead baby seemed to be more important in qualitative terms than in relative terms. Regardless of how many hours the parents spent with their child, the amount of time was always too short for them.

“We were together with the baby and caressed him for a couple of hours. Afterwards I regret that we did not have him longer, and I also regret that we did not have him in the room when we were sleeping. What influenced me was that I did not know for how long the staff thought it was OK to be with the baby, and I was also afraid that the body would change.” pg. 134 (M)

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6 [Support in Meeting with and Separating from the Baby]

The encounter was strongly influenced by what the parents did with their baby when he or she was still in the delivery room. How the situation will be experienced and recollected depended on the caregivers’ basic management knowledge…

“I told the midwife before the delivery that I wanted to have him on my chest. I was scared of not coping with seeing him. I have always dreamed about giving birth to a baby. We had him in the room for seven hours (M). We dressed him; I think one might regret not having done it.

It is not easy to do, but afterwards you feel better (F). The staff told us to say when we were ready to say good-bye to him; I said maybe never, but after seven hours we said we had seen him enough” (M). pg. 134 (M)

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7 [Support in Bereavement]

“(S)upport in bereavement” includes support by caregivers and laypersons.

To meet the physician and the midwife involved even after the stillbirth and again to have the opportunity to talk about the event seemed to be beneficial for the grieving process according to the parents.

Many parents had meetings once a week with a medical social worker as long as they needed support in the grieving process…“I think the contact with the medical social worker was the most positive in the management. She made me understand my own behaviour more. She also helped us to listen to each other.” pg. 134 (M)(A)

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A piece of information or suggestion that was given to the parents could have two very different characteristics. It could be warm and empathic and full of subtle understanding of the mental pain that parents were experiencing, or it could lack sensitivity and psychological insight.

(T)he physician and other caregivers were warm and understanding in advising what to do or they were much too mechanical, ice-cold, and cursory. pg. 134 (A)

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(W)ords and formulations could be the same, but the emotional message could be different from, or opposite to, the empathic communication.

“(G)o home” or “stay at the hospital” after the ultra-sound investigation and confirmation of the baby’s death could be crucial for the parents…

“They advised us to go home and try to understand what had happened. We both thought it was right and of great value(F)

“A physician told me that the child was dead and that I should go home. The message was given in a very inappropriate manner. I became hysterical and almost lost my mind.” pg. 134-135 (M) (A)

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10 [Explanation of the Stillbirth]

“(E)xplanation of the stillbirth” includes the mothers’ feeling of guilt and the medical diagnosis.

If the stillbirth was not investigated medically, these parents thought that it might have a negative impact on any new pregnancy…(A) correct explanation of the stillbirth is an important issue for parents…

“We did not get a diagnosis of why our daughter was born dead. But I think a lot about whether it could have been the cigarettes or the fever or that I was stressed. I will never accept not getting a diagnosis of why she died.” (M)

“I thought it was relieving to have a diagnosis (F). As a mother, I thought it was awful because it was a bacterial infection and I had infected the baby. It took me a very long time before I could tell anybody about the diagnosis.” pg. 135 (M)

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11 [Organization of the Care]

“(O)rganization of the care” includes care option facilities.

The caregivers’ help with understanding the grieving process…(A)nd the offer of special antenatal care for the next pregnancy had eased their despair.

“All the staff took their time and guided us through everything. It was important that nobody disturbed us so we could concentrate on what happened. And we were very satisfied with the information given before the delivery. I got pregnant again after 4 to 5 months. Both my pregnancies after the stillborn baby have been very anxious. I got the same midwife and I am very pleased. I had special antenatal care, and for me it was very important to have staff around who know my situation. Both subsequent deliveries were induced at my own request.” pg. 135 (M)

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12 [Organization of the Care]

“(O)rganization of the care” includes care option facilities.

(T)he option to meet the same caregivers in a subsequent pregnancy seemed to increase the parents’ sense of security.

“The midwife I had with my stillborn child worked at the antenatal clinic at my next pregnancy. I also had the same physician and the chaplain christened the child. This felt very reassuring.” pg. 135 (M)

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14 [Understanding the Nature of Grief] “Since the time with the baby is too short anyway, you really need help with

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“(U)nderstanding the nature of grief” includes facing the grief and the essence of the sorrow never ends.

(T)o see and to hold the baby and to have tokens of remembrance and a photo would help them to understand what really happened and what they were grieving for.

what to do with the baby. I think it is very important to have as many memories as possible so you can face the grief and be able to mourn properly.” pg. 135 (M)

Samuelsson M, Rådestad I, Segesten K. A waste of life: fathers' experience of losing a child before birth. Birth (Berkeley, Calif). 2001;28(2):124-30.


1 [Experiencing that the baby was no longer alive]

…(F)athers found consolation in their adversity through confirmation of their misgivings and reactions and through support and information.

” I got really choked. I didn’t begun to cry directly, I got more speechless so to say. The doctor who gave us the information did this in a very good manner. I tried to comfort my wife who got more upset and despairing than me.” pg. 125 (F) (Doctor)

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2 [Time between being told of the baby’s death and induction of labor] Fathers believed that having time to adjust to the fact that the baby was dead

and to be able to calm down in peace and quiet was essential. pg. 126 (A)

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3 [Time between being told of the baby’s death and induction of labor]

The desire to be left in peace at the same time that so many things had to be dealt with presented a conflict.

One-half of the fathers thought that it was good to be allowed to go home after being informed of the intrauterine death and prepare mentally for the delivery. The others found a measure of security in being able to isolate themselves at the hospital. pg. 126 (A)

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5 [The delivery]

…(L)eft behind, outside of it all, confused, and submerged in a totally female-dominated world.

“…(O)f course there is a heavy concentration on the mother; it has to be that way, it’s only natural since she is the central figure. But somewhere in there, it probably would have been most effective, I think, if I had been able to talk to someone from a purely male point of view. It’s not so easy to absorb everything when there is so much moaning and groaning going on and you are just standing there doing nothing; it’s not all that easy.” pg. 126 (F)

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6 [The delivery]

Despite all the feelings of frustration, most fathers found reassurance in the care routine…

…(G)enerally satisfied with the medical and practical information given and the management of the delivery. They thought that the staff worked extra hard and provided consolation and support. They also thought that the staff knew what they were talking about and what they were doing, and that the

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advice they received was right. They considered that they had been allowed to think over different suggestions and then make their own decisions. pg. 126 (A)

7 [The stillbirth and aftercare]

The fathers approached the baby with respect and dignity, and a certain fear of seeing their child…(P)ersuasion and assistance was needed at times…

…(T)hey thought that they were allowed to do as they wished in the meeting with child, that there were no rules to follow. “Of course, I was still curious despite the outcome and wanted to see how he looked. But, at the same time, it was not... did not feel natural somehow. No, I think I had to be led through all these steps. They helped me with it.” pg. 126-127 (A) (F)

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8 [The stillbirth and aftercare]

Concrete items were found to be invaluable… They maintained that photos and hand and footprints should always be secured, even if the parents should decline.

(I)f they had been left to choose themselves…they probably would not have seen the baby or kept any tokens of memory of their child. They thought that they had not been themselves at that trying time and that grief had blocked their reason.

“Everything felt so wrong. It was almost taboo: you don’t keep a picture of a dead baby. But of course that is the only thing we have left now.”

“It’s good that somebody thinks of taking pictures; you are very thankful afterwards.” pg. 127 (A)(F)

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Sanchez, N. A. (2001). "Mothers' perceptions of benefits of perinatal loss support offered at a major university hospital." Journal of Perinatal Education 10(2): 23-30.

Finding Illustration

1 [Hospital support in the loss experience: Timing of Support]

Much of what women reported about their grief-recovery experiences with the hospital had a temporal theme. In many cases throughout the interviews, the timing of support or the lack of good timing appeared to be important factors in a mother’s perception of an experience as positive or negative.

Many interviewees talked about the staff’s timely or untimely preparation of the mother for the event of the loss and the role that this timing played in the mother’s feelings about the loss. (A/M) (Hospital Staff)

The length of time allowed holding the baby was mentioned on several occasions. Some women praised the unrushed period of time with their baby after birth; others wished they had been given more time with their baby. (A/M)

An emphatically negative response regarded the protocol of taking the baby away for cleaning and, then, returning the baby to the mother bathed but

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without body warmth. (A/M)

The time it took to get the news of the fetal demise from an ultrasound report and the time for the return of the autopsy report were also mentioned as painful aspects of the hospital experience. (M)

Another time-related aspect of care mentioned was the protocol of keeping pictures of the baby on file for an infinite amount of time and mailing a one-year anniversary card. Both procedures were reported as reassuring during grief recovery. (A/M)

2 The presence of the doctor or nurse at the delivery was another temporal issue important to the interviewees.

Two emphatically negative comments related to the doctor and nurse missing the delivery. (A/M) (Doctor and Nursing staff)

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3 [Hospital support in the loss experience: Nurturance]

Nurturance appeared to be another strong theme in the interviewees’ assessment of the support for perinatal loss grief.

Several very positive accounts were given of individual nurses completing nurturing tasks, such as brushing the mother’s hair, holding her hand, casually conversing, and dressing and bathing the baby. (A/M) (Nursing staff)

The interviewees’ language used to describe the nurses reflected nurturance. Words included ‘‘gently, very gently,’’ ‘‘sweet, understanding nurse,’’ ‘‘people were very caring,’’ and ‘‘the nurses were very apologetic.’’ The nurturance that accompanied any support protocol seemed an important part of the process. pg. 26 (A/M) (Nursing staff)

The sensitivity and support of the nursing staff were frequently mentioned. The majority of positive comments regarded individual nurses and included physical care aspects (‘‘she brushed my hair’’), proficiency (‘‘she explained things to me just enough’’), and psychological support (‘‘she was just a real, sweet, understanding nurse’’). pg. 26 (A/M) (Nursing staff)

Two of the positive comments were about the labor and delivery staff in general (‘‘people were very caring, they just couldn’t believe this had happened to us again’’ and ‘‘you could see that the nurses were bonded together, experienced’’). pg. 27 (A/M) (Labor and delivery staff)

The physician's role was also frequently mentioned. One emphatically positive comment regarded a physician who was proficient and well networked in the

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hospital system. (A/M) (Physician)

Another positive comment was about a physician who brought in a spouse who conducted grief counselling. (M) (Physician)

4 [Hospital support in the loss experience: Nonnurturing Actions]

…interviewees remembered nonnurturing actions as negative aspects of the recovery.

One woman reported that the doctor said, ‘‘We can bring him back.’’ The doctor was referring to the baby’s return to the room after cleaning, but the mother interpreted these words as a chance for the baby’s survival. The perceived thoughtlessness of this phrasing remained with the mother as she reflected on her loss. pg. 27 (A/M) (Doctor)

Another interviewee objected to the use of the words ‘‘cold room’’ in referring to the place where dead babies are kept. She believed that a more tactful term could be chosen for parents. (A/M)

A third interviewee objected to a nurse who came into the room and mistakenly asked, ‘‘What about a crib?’’ (A/M) (Nurse)

Another interviewee’s emphatically negative comment regarded a nurse who seemed ‘‘disgusted’’ by the surprise delivery of the dead fetus. pg. 27 (A/M) (Nurse)

Emphatically negative comments regarding the physician’s role included poor bedside manner and a comment perceived as thoughtless, such as being late for the delivery ‘‘due to traffic.’’ (A/M) (Nurse)

One physician appeared to the interviewee to be incompetent in handling the circumstances of the loss. (A/M) (Physician)

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5 [Hospital support in the loss experience: Administrative Aspects]

The administrative aspects of the hospitalization —such as rooming arrangements, errors in care, and confusing information—were reported by seven of the interviewees, ranging in comments from negative to extremely negative in feeling.

Confusion, understaffing on the unit, and being left alone in an exam room were conditions described with negative responses. (A/M)

Emphatically negative responses referred to mistakes about the sex of the baby and the condition of the baby, an unwanted autopsy, and lack of information about procedures. (A/M)

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6 [Hospital support in the loss experience: Loss Preparation]

When the loss was anticipated, preparation for the perinatal loss and

Most reports were emphatically positive (‘‘knowing in advance what I was going to see was so helpful’’ and ‘‘it helped to know how the baby would

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information about what the delivery and recovery would involve was reported among the interviewees.

look’’). pg. 27 (A/M)

One account was emphatically negative (‘‘I wish they had prepared me at the time of the ultrasound that this was going to look like a real baby’’). pg. 27 (A/M)

Reading material given to parents experiencing perinatal loss was frequently mentioned as positive (‘‘that book was so useful’’ and ‘‘they also gave us a book’’). pg. 27 (A/M)

One interviewee mentioned that she was frightened by the title of the book but found the information to be very helpful. (A/M)

7 [Hospital support in the loss experience: Partner Concerns]

Partner involvement was another theme of the hospital support of the loss. Seven of the interviewees spontaneously mentioned times when their partner was negatively impacted by noninclusion during the recovery process.

Topics included not informing the partner of when to expect the delivery and what to expect, not involving the partner in bathing, holding or being photographed with the baby, and not including the partner in the overnight stay in the hospital. (A/M)

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8 [Hospital support in the loss experience: Memorialization and Celebration]

Memorialization and celebration was an important aspect of perinatal loss recovery.

Many of the interviewees reported using a component of the hospital support—such as the photograph, certificate, quilt square, and chaplaincy referral— to plan a memorial, a baby book, or some personal kind of remembrance of the lost child. (A/M)

Interviewees mentioned that the certificate presented to parents in the hospital included the baby’s footprints and, at appropriate times, a lock of the baby’s hair. One interviewee pointed out that she framed the certificate and hung it in her home as a reminder of the baby’s existence. (M)

As a part of the hospital support protocol (and if the parents chose), photographs were taken of the baby and offered to the parents. Respondents frequently mentioned the pictures [photographs of the baby] as aspects of the hospital’s support (‘‘I must have looked at those photos one hundred times a day for a year’’ and ‘‘the pictures were a nice touch, although we took our own photos’’ and ‘‘we appreciated the photos, but we wish they were full body’’ and ‘‘those photos were too clinical’’). pg. 28 (A/M)

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Five interviewees mentioned the hospital’s suggestion for participating in a memorial quilt-square activity in order to honor their baby. One mention was emphatically positive and the interviewee expanded on the process of making the square together with her spouse and, then, ‘‘letting go’’ of the square to send it back to the hospital. pg. 28 (A/M)

Most interviewees commented on how the square was a nice idea and it was ‘‘good to know that I had the option.’’ pg. 28 (A/M)

The anniversary card sent to parents at the one-year anniversary of the loss was mentioned once in an emphatically positive way, characterized by the tears of the respondent. (M)

9 [Hospital support in the loss experience: Additional Hospital Support]

The final theme was additional hospital support services.

The hospital chaplaincy service was mentioned and comments were emphatically positive. (A/M)

One interviewee spoke about having her own priest called into the hospital by the hospital chaplain in order to receive the sacrament of the sick. (A/M)

Two people spoke about how beneficial chaplaincy was in helping to arrange funeral and memorial services for the baby. (A/M)

Social services were mentioned regarding the frequent offers for guidance and referral, and a visit by the social worker. (A/M)

Negative comments included a feeling of intrusiveness and the young age of a social worker. (A/M)

Support groups referred by the hospital were frequently mentioned (‘‘we are a club no one wants to belong to . . . but when one joins, one knows it is the best place to be’’ and ‘‘offering the support group nice’’). pg. 28 (M)

The hospital protocol of a follow-up phone call was noted both as positive and as negative when it was promised but never happened. (M)

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Sun, J. C., Rei, W. & Sheu, S. J. 2013. Seeing or not seeing: Taiwan's parents' experiences during stillbirth. Int J Nurs Stud.



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1 [Deciding to see the stillborn baby: Seeing is believing]

The parents seldom thought about witnessing their child’s death, let alone accepting it, which was a totally unimaginable situation. Some parents decided to see their stillborn infant to confirm the death.

Seeing their stillborn infant was parent’s opportunity to come to terms with the infant’s death and validate the baby’s status, thus achieving a certain degree of reassurance through the visual experience.

“My husband did not want me to see the infant because doing so would make things much more painful. However, I wanted to check and see if anything was wrong with my baby. He appeared normal, but his life was taken away before he was born.” pg. 5 (weeping) (M)

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2 [Deciding to see the stillborn baby: Seeing is to avoid regret]

Some parents said they would regret it if they lost this chance to see their stillborn infant.

“She is our first child. We discussed this. If we had decided not to see her, we would always have imagined what she looked like and would have regretted not knowing. We wanted to see her” pg. 5 (F)

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3 [Deciding to see the stillborn baby: seeing is an opportunity to say farewell]

Seeing was to bear witness to the infant’s death and was the parent’s only opportunity to bid sad farewell to their baby.

“We burst into tears upon seeing the infant. We were speechless. We looked at her and said, ‘It is our fate to lose you. In your next life, please come back to become our child again.” pg. 5 (M)

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4 [Deciding to see the stillborn baby: seeing is imprinting the stillborn infant in one’s memory]

Seeing the infant validated his or her existence, providing a meaningful image that enabled the parent to maintain memories of the baby.

“We could not stop crying when we saw him. My husband comforted me and asked me not to think of it too much. How can I not think? After seeing him, I swore that I would never forget that he is the second son in our family.” pg. 5 (M)

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5 [Deciding to see the stillborn baby: Seeing is a shock]

Seeing their stillborn babies forced parents to deal with the pain of reconciling the real and imagined appearance, size, and skin color of their infants. The infant’s appearance profoundly impacted the parents and some had negative reactions, especially parents who had little, if any, prior psychological preparation.

“The nurse asked if we would like to see the baby, and we were taken aback since we had never encountered such a situation. We agreed. I was frightened as the nurse uncovered the baby. The baby was entirely different from what we had imagined. She was so small, purplish, and swollen. I could not accept that she looked so much different than what we had imagined.” pg. 5 (F) (Nurse)

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6 [Deciding not to see the stillborn baby: Not seeing is cutting the attachment to the stillborn baby]

Stillbirth is a paradox of facing the job of life and then unexpectedly being struck by the sadness of death. Under this circumstance, some parents chose to avoid or isolate the event of stillbirth to follow their cultural taboo of not seeing their babies.

Some parents chose not to see their stillborn babies because they were fearful of greater emotional attachments to their infants and less willingness to let go after seeing them.

“It is similar to the past, when poor families gave up their children to other families; they would not look at their baby after the birth, out of fear of becoming attached to him or her. I thought I would feel conflicted if I saw our stillborn baby because his appearance would always be in my mind, so we chose not to see him.” pg. 5 (M)

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7 [Deciding not to see the stillborn baby: not seeing as preventing memory imprinting]

Some parents were afraid that their babies could be abnormal, emaciated, or deformed; thus, they chose not to see them to avoid bad memories.

“I didn’t want to seem him after he was born because I was afraid he was abnormal, swollen, or dark in appearance. If I saw him, I would never forget his face. I chose not to see my baby.” pg. 5 (M)

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8 [Deciding not to see the stillborn baby: not seeing is to avoid guilt and suffering]

Most mothers worried that they were responsible for their babies deaths, and they felt guilty. They feared that seeing their babies would create more guilt, and thus, chose not to see them.

“The nurse asked if I would like to see my baby and also if I would like to deal with her or leave it to the hospital. I did not know what to do. I was unprepared. I felt that I would have more pain and would fail to let go if I had seen the baby. I did not want to see the baby. So I let my husband see her.” pg. 5 (M)

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9 [Deciding not to see the stillborn baby: Not seeing is to pretend event closure]

After the stillbirth, some mothers chose to escape and block out all issues regarding the stillborn infant.

“I did not want to see the stillborn baby. I wanted to leave the hospital after the delivery and try to forget it. I wanted someone to bury him and never to think of him again.” pg. 5 (M)

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10 [Deciding not to see the stillborn baby: Not seeing as the act of following the cultural taboo]

In Taiwanese culture, stillborn infants have no funerals or religious ceremonies. Buddhists and Taoists believe that this will allow the

“I did not know whether I should see the baby, so my husband called my mother-in-law who said it would not be good for the baby if we saw him. I wanted to see him, but the cultural taboo prohibited us from seeing him.” pg. 5 (F)

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spirit to reincarnate, rather than “lingering as a lonely ghost.” Parents feared violating this taboo would affect the survivors and the dead, so they chose not to see their stillborn babies.

11 We recommend that clinical care personnel accommodate parents’ choices and cultural customs at an appropriate time and place.

Health professionals should orient parents to the circumstances and assist in the additional decisions parents may face in advance of the stillbirth.

Parents should have sufficient time and information to consider the implications of seeing or not seeing their stillborn infant, express their feelings, share their experiences, and discuss what to do following the stillbirth.

Among the 12 couples, four expressed that they tried to look on the Internet for information about labor induction for stillbirth so they could anticipate the impending decision of seeing their stillborn baby. pg. 6 (A)

Eight couples exclaimed that they were not prepared and were not informed about making a decision on whether or not to see their stillborn baby. pg. 6 (A)

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12 Health care staff should be mindful of and overcome the stereotypical image of the male partner carrying the overwhelming responsibility or task of seeing the stillborn infant.

Three coupes presented shared decision-making and achieved consensus for facing the event; fathers played more dominant roles than mothers in the decision-making process of seeing or not seeing their stillborn infants. Only two mothers showed more determination to see their infants than did their husbands. pg. 6 (A)

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Trulsson, O. & Rådestad, I. 2004. The silent child--mothers' experiences before, during, and after stillbirth. Birth, 31, 189-95.


1 [Before the birth]

One source of trauma above and beyond the loss itself may be a woman’s initial contact with a health care service about her suspicion that the baby has died in utero.

Two women did not perceive anything wrong—they came for a routine checkup and were informed by health care staff that all was not well with the child. Most women who telephoned the hospital because of worry about the baby’s health were told they were welcome to come in for a checkup. Women reported that the phone conversation was brief, concrete, and also reassuring. Two women who cautiously expressed their worry were advised to wait and see, and were told that their symptoms were probably normal. Four women who reported they had difficulty communicating their worry did not want to be viewed as troublesome or unnecessarily worried. Some had called

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the hospital several times and were hesitant to call again. pg. 190 (A/M)

Some study women testified that their concerns were disregarded, and no examinations were made to determine the child’s vital status, probably delaying the diagnosis of stillbirth. pg. 193 (A)

Two women who cautiously expressed their worry were advised to wait and see, and were told that their symptoms were probably normal. pg. 190 (A)

Four women who reported they had difficulty communicating their worry did not want to be viewed as troublesome or unnecessarily worried. pg. 190 (A)

Some had called the hospital several times and were hesitant to call again. pg. 190 (A)

2 [Before the Birth]

…the care (information, atmosphere, attitude) during and after determination of the vital status [of the baby] was a source of distress. Women sensed a discrepancy between what staff said to them and their gestures and actions, which created a confusing situation. They intuitively understood that something was wrong, but felt they were not part of the process and that they were being treated clumsily. Pg. 190 (A)

Five women reported that verbal communication with the staff ceased during the examination, but that body language of staff showed that something was wrong with the fetus. This silence worried the women, who said that it would have been better if the staff had talked during the examination—explaining what they saw or what was puzzling them. pg. 190 (A/M)

“They didn’t say anything. Everybody was totally silent, and we asked, ‘What’s going on, what’s happening?’ They didn’t say anything so I thought it was…First there was a midwife, then a doctor came in, and then a gynecologist, and they were all talking to each other but not to us. And obviously if you’re lying there and you’re having a baby and they don’t hear any heartbeat, then you imagine all kinds of things…” pg. 190 (M)

Almost all participants thought that the examination room had been full of personnel who were communicating with each other without involving the parents in the discussion. pg. 190 (A/M)

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“I know there were a lot of people around me; I remember how horrible it was lying there with all those people shouting around me, and I was crying a lot. I think that was awful.” pg. 190 (M)


The women described the time immediately after they learned their baby was dead as unreal and numbing. They were in turmoil with feelings of anger and sorrow. They had difficulty comprehending what had happened and what it all meant. All the women wanted simply to escape from the entire situation. The dead baby within was perceived as indefinable and frightening. They wanted to get rid of the dead child immediately.

“You don’t really understand what they’ve told you, even though you know the worst has happened. It’s unreal…that whole time…I don’t know…it’s like I can’t remember it, can’t describe my feelings. It was like being in a straitjacket.” pg. 191 (M)

“I think in some ways I was really cold...I was so...it’s hard to explain, but it was like I had no feelings. Sort of like I was completely empty inside, so I didn’t really react while we were at the hospital.” pg. 191 (M)

“At the time I just wanted to die, I can’t put it any other way, I just wanted to get away from the whole world, I couldn’t believe all this was happening. I was in shock, I got hysterical and kept saying I had to have a cesarean and get rid of him. I didn’t want to…but they said I had to give birth the usual way. And because of that—I didn’t understand what they meant by that—I thought they were being mean to me and wanted to hurt me.” pg. 191 (M)

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The optimal duration between diagnosis of stillbirth and induction of delivery for each woman may depend on the circumstances, the woman’s needs, and the risks of psychological trauma above and beyond the loss itself.

When they had been told their baby was dead, all the women were given a choice: either they could go home and return the next day, or they could stay at the hospital and wait for induction of delivery. The midwives and physicians advised them to wait a day or two before inducing labor.

Three women did not have their partners along when the stillbirth was diagnosed, and they chose to stay at the hospital. pg. 191 (A)

The other women, after discussing with their partners, decided to go home and come back the next day for induction. pg. 191 (A)

“Go home…come back the next day for our baby to be born? Everything was so chaotic we were both shocked—that we were supposed to go through a normal delivery! Wouldn’t it be better if I was anesthetized and they took out the baby…so we wouldn’t have to deal with it all? That was our first reaction. We came to terms with it pretty soon, that it wasn’t an option, that we had to deliver the baby…but we didn’t want to go home. They gave us a room or

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some place at the hospital where we could be alone for a few hours, and that was really good…so we sat there and calmed down and decided what to do.” pg. 191 (M)

“Everybody took their time. The midwife wrote her name and phone number on a piece of paper and gave it to me and said: ‘I’ll be here for you, and no matter when you call, somebody will know where I can be reached and they know who you are. I’ll leave this information at the delivery ward. You just call. If you feel you can’t go on with this dead baby inside you, or if you have any other problems, just call and come in straight away. We’ll be here with open arms, ready to take care of you.” pg. 191 (M)

“Then they asked if we wanted to go home. I wanted to stay. We lived in a little apartment and were in the process of moving; there wasn’t really anything positive about going home. So I stayed at the hospital overnight, and they induced labor the next morning.” pg. 191 (M)

“Then they gave us the choice if we wanted to go home and spend the night at home or if we wanted to stay there on the delivery ward but we decided to go home and come back the next day. It was really important for us, at least we’ve noticed afterwards, that we got to go home, got to be alone together and…digest it, you might say.” pg.191 (M)

Another woman was induced immediately after she learned of the death, and she thought that this was a good decision. pg.191 (A)

Nine women had labor induced the day after learning of the stillbirth (within 24 hours of notification). pg.191 (A)

One woman was advised to wait a couple of days before induction so that her husband could be present at the delivery. pg.191 (A)

Some women noted that they needed time, first, to motivate themselves for a vaginal delivery (and not a cesarean section), second, to prepare themselves psychologically for the birth by taking in medical information, third, to give themselves physical and psychological rest before the birth, and fourth, to prepare themselves psychologically to meet and say farewell to their long-awaited baby. pg. 193 (A)


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All women said that it would have given them a great sense of security if they had met the same caregivers at induction of labor as those on the day the stillbirth was diagnosed. They stressed the importance of calm, dependable caregivers, who had time to give them clear information about what was going to happen.

“We went and talked to the midwife on the obstetrics ward before we went home—about what would happen the next day. It was really good that we got to visit her, so when we arrived the next day she received us. She came along with us to the delivery room and sat and talked to us without making us feel rushed. We talked a long time about what we were going to go through and what we had already been through and how we felt. It was really, really good to have that time to sort of take a deep breath.” pg.191 (M)

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6 Three women thought that they were not given priority or that they were not considered important once it was known their child was dead. They felt the information they received was insufficient, they had to change rooms several times, they saw several different doctors, and several midwives were involved in their delivery. pg. 191 (A)

“The only thing I’m a bit critical about is what happened before the delivery. I just don’t think they got to grips with the situation. I felt like a thing, an object that got moved around. I got pushed out of the way like I wasn’t important. As long as you had a dead baby inside you, you weren’t important and just got pushed to one side. ‘Out of the way, out of the way,’ and nobody wanted to be responsible or talk to you.” pg. 191 (M)

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7 [The delivery]

All the women were informed that a vaginal birth would be best for them for both physical and psychological reasons. They all immediately perceived this plan as appalling—they saw no meaning in giving birth to a dead baby.

“He explained why we should give birth normally, because there’s less risk of complications and the grief process and all that. We started to take in their advice right away, but then he started talking about anesthesia, epidurals and all that. Then I realized, because that’s when I understood it would be a normal delivery and I would be going through labor. I hadn’t quite understood that, I wasn’t there mentally, so I thought it was abominable, but until then I’d been like ‘okay, alright, uh-huh’ and took in the information.” pg. 192 (M)

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8 [The delivery]

Ten women believed that they had been acknowledged and accepted in their sorrow: they thought that the midwives were standing by them, they were suitably attentive during the delivery, they sympathized, and that the women were received in a warm and caring fashion as individuals. A few women found the midwife insecure, but nonetheless caring.

“I thought the staff who took care of us were fantastic. They were people, not programmed machines in a huge organization. People who cared, who dared to cry with us, who dared to stand by us in our pain and sorrow. Just totally fantastic.” pg. 192 (M)

“She wasn’t very secure in her role, the one who took over after the first one, maybe because she hadn’t done it very many times or because she let it get to her as a human being. But what was fantastic was that they were people, not machines.” pg. 192 (M)

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9 [The delivery]

When the baby was born, the women experienced total silence. For a few this was expected, but for most it came as a shock. Some women approached their baby in a straightforward manner, whereas others found it difficult.

All women said the actions of staff were important in helping them dare to look at the baby. They felt they needed guidance in how to approach the baby to make everything as good as possible.

Nine women said it was a good and solemn feeling to give birth to, and see, the child. One woman had the baby placed on her belly as a matter of course, and described it as a positive meeting. pg. 192 (A)

Three women found their baby frightening at first glance, but after a while they could see “beyond” the appearance and focus on the baby’s normal features. pg. 192 (A)

The first reaction of 8 women was that they did not want to see the baby at all, but with pressure from the staff, they eventually looked. pg. 192 (A)

No woman regretted having seen her baby; on the contrary, they were grateful for the encouragement, and thought the staff could even more strongly emphasize the importance of seeing the baby, since the parents’ time for this meeting is so short. pg. 192 (A)

All women realized that this was their beloved and long-awaited child. pg. 192 (A)

“We had known for hours that the baby was dead, and I thought, this is it, here and now, you’ve done it and all you have left is the feelings. But then…I remember when she came out,, the midwife said it was a Maja — that was her name — and she put her on my stomach. The midwife didn’t ask if I wanted to have her there, she just put her there on my stomach, which was a smart move because I don’t know what I would have said if she’d asked. I’m sure I would have wanted to have her there. So I held her a bit and looked her over and cried.” pg. 192 (M)

We saw the hands. He had such long fingers. Yeah, that’s the kind of thing that stays with you, that his fingers were so long, his hands were so beautiful. I remember we sat and looked at him and said he’s got Mom’s nose, and Dad’s. pg. 192 (M)

When we were waiting for the baby to come out, of course we knew he wouldn’t cry...but what was strange, I think, was that when he was born it wasn’t too bad, it was just very calm and quiet and neither of us broke down when we saw him. pg. 192 (M)

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I balked at first. I had to take a couple of deep breaths before I dared to look at her, so I could get used to it slowly. My husband didn’t react, so I think he was very strong to see beyond how she looked when I couldn’t. He went and took her in his arms. pg. 192 (M)

10 All women were glad about what they had done with the baby after the birth. Four regretted that they had not done more, as encouraged by the staff. In retrospect, all women thought that health care staff should encourage parents to spend as much time as possible with their baby while in hospital, and they stressed the importance of using this time.

…All women said it was vital to inform parents both orally and in writing. They emphasized that the information must be absolutely clear, because parents have only a few days in which to receive their baby and say goodbye, while gathering as many memories as possible.

During the interviews, women expressed how grateful they were that they had pictures of the baby and other mementos; they valued these tokens (handprints and footprints of their baby, a lock of hair, and an ultrasound picture) of remembrance. pg. 192 (A)

Eight of the 12 women believed that they had far too little time with their baby, and were not given enough information about what they could do, and how they could do it. pg. 193 (A)

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Weaver-Hightower, M. B. 2012. Waltzing Matilda: An autoethnography of a father's stillbirth. Journal of Contemporary Ethnography, 41, 462-491.


1 Clearly my wife didn’t know yet, for we talked just after about how mad it made her that the technician would keep a pregnant woman frightened instead of just letting her know. (They never hesitate to break protocol when everything is OK, after all).

Because she hadn’t felt Matilda moving Thursday, as a precaution my wife went to the doctor on Friday to reassure herself……. The staff sent us into the ultrasound room without much wait, laid my wife down, and began rubbing the ultrasound wand around her gel-covered belly. The technician settled in the right spot and the screen revealed Matilda’s image. The technician checked a few places, moved the wand, pushed a few buttons. My wife, feeling panicky, asked, “Is everything OK?” The technician, straining to show no hints, said, “We’ll get these to the doctor and she can talk to you about it.” With increasing worry, my wife prodded, “Can’t you just tell us that everything’s all right?” Same answer. pg. 466. (A/F)

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2 After her delivery, the nurses and doctor whisked Matilda away, cleaned her body, and dressed her (a common death ritual in many

I hesitated to look, to see a dead baby. What if she looked deformed, mangled, or decaying (McCreight 2004, 338)? I may have actually backed

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cultures). When the nurses returned her to our hospital room, we were frightened. Simultaneously, though, an almost tidal pull drew me to see my daughter. She was our first baby, so my wife and I had found it endlessly fascinating imagining what she would look like, what our genetic material concocted.

away, if only slightly, when they wheeled in the cart holding her. pg. 469. (A/F)

3 When the nurses laid her in my arms, I knew I held not a “body,” not a “corpse.” It was her. It was all I will ever know of her. Just those few hours. Just that body.

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4 I wish that I had seen her completely naked. That may sound strange or perverse, but I wanted to know all of her, every inch, every detail of this life we created.

I never did look. I didn’t have the courage or the foresight. Now, though, I want so much to see her knees and elbows, her tiny butt, the small of her back and curves of her armpits. I wish that I had been brave enough to pull open her eyelids to see her eyes (what color were they?). All these parts formed her, and I will never see them. pg. 470 (A/F)

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5 Her body was not disgusting, as we feared, but instead miraculous, strange and wonderful.

Seeing and holding her brought both intense pain and great joy at once.

Perhaps this and other stark dualities—the body as beautiful and horrible, simultaneously saying hello and goodbye, giving birth but leaving with empty arms—best define the experience of stillbirth. pg. 470 (A/F)

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6 For the parents of stillborn babies, things perform a critical role. Things function as the tangible, earthly connections these parents have with their babies, a means of creating memories of and social identities for their children since the corporeal child no longer exists and often goes socially unrecognized.

No, the things she touched, that were a part of her, are sacred. We hoard them, treat them with the reverence of archivists, and—like curators—worry uncontrollably that they will be lost, broken, or consumed by a fire. pg. 475 (A/F)

This is all. The collected proof of life for our daughter. Though “only things,” they tie Matilda to this world. They are the runner-up prize to her first tooth, her kindergarten drawings, her soccer trophies, a flower from her wedding bouquet, and pictures of her children. As I said, for us and for other parents of stillborn children, these things perform important functions. pg. 476 (A/F)

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Worth, N. J. 1997. Becoming a father to a stillborn child. Clin Nurs Res, 6, 71-89.


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1 [Acknowledging the child’s reality / acknowledging the loss]

The child’s reality was discerned through watching the birth and then seeing and holding the child. ….Seeing and holding the child allowed the fathers to realize not only that this was a child but that this was their child. Seeing the child helped the fathers to acknowledge the reality of the child and to realize that their child was not alive.

Many fathers were surprised to find themselves counting the number of fingers and toes and looking for family resemblances just the fathers of a live child would do. (A/F)

Frank’s immediate reaction was to compare the baby, as he was born, to his other two children: “The first thing we saw when our son was born was this full head of absolutely gorgeous curly hair, just an absolutely beautiful face, you know, even though it was black and blue, the features were just beautiful… To see his full head of hair and his eyes closed and five fingers, five toes, two ears, one nose, all the accessories. Everything was in perfect proportion. The baby, he was perfect.” pg. 79 (F)

“The one father who did not see or hold his child commented: “I regret not having held my baby and that’s the hardest thing, because I can’t change that… It will never be closed because of the decision we made. We didn’t finish it the right way. I never saw the baby. It was like the baby is there, but there’ no memory in there of an image, no cry, nothing so that it is still open.” Pg. 79 (F)

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2 [Dealing with practicalities]

As with any death, dealing with practicalities had to be addressed. The first practicality to be dealt with was stillbirth registration and autopsy forms. The fathers reacted differently to these issues.

Dave, who was approached within hours of his child’s delivery, felt the timing was inappropriate. He felt the was being rushed into filling out forms when he was still trying to come to terms with what had just happened; on the other hand, Glen felt it was acceptable that administrative matters be managed.

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3 [Dealing with practicalities]

The third practicality dealt with the unit to which the wife was transferred following the delivery. Six of the fathers were upset that their wives were transferred to a postpartum unit. Two of the father’s, however, believed that having a room on a postpartum unit was therapeutic.

Frank’s wife discharged herself 15 hours after the delivery because the only room available was right next to the nursery. Their wives could see normal healthy babies to help them realize that not all babies die, but they could also be alone in their private room if they wished. (A/F)

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4 [Accepting the reality of altered fatherhood] One father, who did not see or hold his child, was having difficulty 5 years

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after the stillbirth in identifying himself as a father with respect to his child. He was still struggling with acknowledging the child’s reality, as he had never seen the child, and was also still struggling for recognition as a father by others.

5 [Maintaining memories]

Maintaining memories was important, as life would go on, but the fathers did not want to forget their child. Tangible memories included pictures of the child, a lock of hair, wrist bands, and cot cards.

A picture of the child was used by some fathers to help others validate the child, and therefore, themselves as fathers. (A/F)

Memories were important for the fathers in this study, as they incorporated the child into the family and struggled for recognition by others. For example, six fathers received a picture of their stillborn child that they treasured. (A/F)

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Yamazaki, A. 2010. Living with stillborn babies as family members: Japanese women who experienced intrauterine fetal death after 28 weeks gestation. Health Care Women Int, 31, 921-37.


1 [Living with the reality of the loss: A quiet birth without the child]

The women gave birth within several days of the fetal death. Some remarked that they were able to endure the experience by looking forward to seeing their child. Every woman, however, either describing the experience as traumatic or recalling the support from medical personnel and calling the birth “a good delivery,” found the experience eclipsed by emptiness, anger, anxiety, loneliness, and sorrow.

“It was a good delivery. My 4-year-old daughter and my husband were present; my husband prompted my daughter to hold the baby. When she said, “Cute,” the nurses began to cry.” pg. 927 (M)

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2 [Living with the reality of the loss: Life without the child]

Whether the women left the hospital immediately after the delivery, stayed another week just as in a normal childbirth, or even received good care from the maternity ward staff, they all had to face the various realities of the fetal loss. They were living with the loss of their child immediately after suddenly being told of the fetal death.

“I was given a private room, but since it was located near the room for newborn babies, I cried in the middle of the night when I heard their energetic cries.” pg. 928 (M)

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3 [Raising a child who does not exist in real life: Proof of the birth of A primiparous woman who was told of fetal death at 38 weeks, after giving

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the child]

Some hospitals provide photographs, as well as the umbilical cord and footprints, of the stillborn baby, which are cherished by the women as proof of the birth of their child.

birth, was asked, “Do you want to see the baby?” She said, “No.” Six years later, she still regrets that decision. She still vividly remembers the sight of the baby’s feet (the bottoms) before the baby was taken away. “All I have now is this (the ultrasound picture). I made a copy and put a cover over it so the colors won’t fade.” pg. 929 (M)

4 [Raising a child who does not exist in real life: Proof of the birth of the child]

A woman who initially thought that she could “pretend it did not happen” said that unless she accepted the fact that the baby had been born, she could not move on from the loss. One woman who refused to see the baby at birth now cherishes the proof that her baby existed, though not long, in this world.

A primiparous woman who was told of fetal death at 38 weeks, after giving birth, was asked, “Do you want to see the baby?” She said, “No.” Six years later, she still regrets that decision. She still vividly remembers the sight of the baby’s feet (the bottoms) before the baby was taken away. “All I have now is this (the ultrasound picture). I made a copy and put a cover over it so the colors won’t fade.” pg. 929 (M)

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5 [Raising a child who does not exist in real life]

Compared with their counterparts in Western countries, Japanese mothers tend to nurture the sense of oneness with their child rather than respect the child’s independence….they have an instilled mindset of not quite accepting the separation by death with an important person as an absolute separation.

When a fetus dies in the uterus, however, he or she has no entry in the family register. For this reason, the degree or scale of mourning is influenced by the customs of the region and the intentions of family and relatives.

There are specific ways to build the relationship with the lost child [and] some women experienced the process of raising the lost child in real life.

..there was a woman who “raised” her child by talking to a Buddhist altar every morning and evening. Thus, one can infer that the woman was living with her stillborn child as a family member. pg. 933 (M)

One woman kept her child’s cremated remains at home in order to “live together” by praying at an altar instead of placing the ashes in a tomb. pg. 933 (M)

Another woman placed the ashes inside the tomb of her ancestors and visits it every month on the day of the child’s death. pg. 933 (M)

Yet another woman lost her child to the mortician immediately after the stillbirth when he came to the maternity ward of the hospital. After cremation, she could not find the ashes of her child. She has done nothing in terms of mourning. pg. 933 (M)

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APPENDIX VII: LIST OF UNSUPPORTED FINDINGS

Study Finding

Dyson & While (2008) Helpful things: It was also considered helpful when the staff tactfully acknowledged the baby’s death, sked how the mother was feeling, and facilitated the parents to ask questions.

Helpful things: Parents also felt that it was sometimes helpful if the staff were gently directive on issues such as spending time with the baby, pain relief and counselling.

Unhelpful things: Lack of continuity in professional care was cited as being extremely unhelpful.

Unhelpful things: A detached attitude on the part of the staff was also identified as being particularly unhelpful.

Unhelpful things: Parents also cited organizational uncertainty as unhelpful, e.g. administrative problems.

Hsu, Tseng & Kuo (2002) Taiwanese hospitals to counsel the families of women who have experienced stillbirth, especially fathers, on issues associated with communication and grief.

Pullen, Golden & Cacciatore (2012) [Noted Exit of HCP] …(P)arents who perceived HCP communication positively specified that the HCP who gave the death notification stayed with them for a while before leaving.

Säflund, Sjögren & Wredling (2004) [Organization of the Care] “(O)rganization of the care” includes care option facilities. They also never forgot it when the caregivers shared their experience with the baby in an understanding, empathic, and warm setting.

[Understanding the Nature of Grief] “(U)nderstanding the nature of grief” includes facing the grief and the essence of the sorrow never ends. Both mothers and fathers were adamant in saying that physical contact with the dead child facilitated recovery.

Samuelsson, Rådestad & Segesten (2001) [The delivery] Sometimes it was difficult for the fathers to understand the information given to them, especially if the staff used professional medical terms.

Trulsson & Rådestad (2004) [Before the birth] On arrival at the hospital, women wanted clear information about what was going to happen, sympathy and understanding, a minimal number of people around them, and to be tended by the same caregivers throughout.

providing care for families who have experienced stillbirth: a · pdf file ·...

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