ANNOTATED BIBLIOGRAPHY

Genetic Library: Grief and Bereavement

Courtney Sebold & Christine Koil

Received: 8 October 2008 /Accepted: 24 November 2008 /Published online: 27 February 2009# National Society of Genetic Counselors, Inc. 2008

Abstract As genetic counselors, we frequently encounterfamilies that have experienced a significant loss, be it apregnancy, a child, or a parent. The purpose of this GeneticLibrary is to introduce genetic counselors to some of theresearch that is currently being conducted in the areas ofgrief and bereavement support, as well as end-of-life care.Of course, it is impossible to capture the richness of thesearticles in one or two paragraphs. We therefore encourageinterested genetic counselors to request and review the fullversion of these papers.

Keywords Grief . Bereavement . Perinatal hospice . Loss .

Death .Miscarriage . Stillbirth . End-of-life care .

Genetic library . Palliative care

Maciejewski, P.K., Zhang, B., Block, S.D., Prigerson,H.G. (2007). An Empirical Examination of the StageTheory of Grief. Journal of the American MedicalAssociation, 297(7), 716–723.

Most genetic counselors are familiar with the stage theoryof grief. This is the theory that, following a loss, individuals

go through distinct phases of reactions. The most wellknown stage theory of grief is the Kübler-Ross model.However, up to this point in time, there have not beenany empirical studies that examine whether reactions toa loss actually do progress through stages. In this study,the authors examined a cohort of 233 bereavedindividuals to determine whether their grief progressedthrough the stages of disbelief, yearning, anger, depres-sion, and acceptance. The cohort was obtained from alarger ongoing longitudinal study, The Yale Bereave-ment Study, and was followed over the course of2 years. Validated scales including the Inventory ofComplicated Grief-Revised and the Hamilton RatingScale for Depression were used to assess indicators ofthe five grief reactions. The results indicated that,although all five reactions were present throughout thecourse of the study, acceptance was always the mostdominant reaction to a loss, followed by yearning. Inaddition to the original analysis, the authors examinedthe data in a unique way: by plotting reactionsaccording to their maximum values over time. Althoughacceptance was the predominant reaction to lossthroughout the course of the study, each reaction peakedat different times. Reactions peaked in the followingorder: disbelief, yearning, anger, depression, and, finally,acceptance. When examined in this way, the datasupport the stage theory of grief. In addition, the dataindicate that by approximately 6 months after the loss,disbelief, yearning, anger, and depression were all in adecline, though still present. Taken together, thesefindings provide the first empirical evidence in supportof the stage theory of grief. By shedding light on thereactions following a loss, these results may helpgenetic counselors provide anticipatory guidance tobereaved families.

J Genet Counsel (2009) 18:200–203DOI 10.1007/s10897-008-9207-7

C. Sebold (*)Chromosome 18 Clinical Research Center,University of Texas Health Science Center at San Antonio,7703 Floyd Curl Drive,San Antonio, TX 78229, USAe-mail: seboldc@uthscsa.edu

C. KoilCenter for Prenatal Development,4010 Montgomery Blvd. NE,Albuquerque, NM 87109, USAe-mail: ckoil@cpdhealth.com

Gold, S.J. (2007). Navigating Care after a BabyDies: A Systematic Review of Parent Experienceswith Health Providers. Journal of Perinatology, 27(4),230–237.

Genetic counselors frequently work with parents that haveexperienced a perinatal loss, including miscarriage, stillbirth,or neonatal death. Studies suggest that families recall eventssurrounding the loss with great clarity, including both positiveand negative interactions with health care providers. There-fore, it is important for genetic counselors to be cognizant ofthe potential ramifications of their conversations and actionswith bereaved families. This study is a systematic review of 60articles regarding interactions between parents and health careproviders following a perinatal loss. Included in the analysiswere English-language articles that evaluated losses between14 weeks gestation and 1 month after birth; were completedwithin the United States; had four or more participants; andcontained direct patient input (via surveys, interviews, orfocus groups). Based on the literature review, Gold concludedthat a high number of parents expressed dissatisfaction withtheir interactions with physicians, nurses, and other hospitalstaff members. Some interactions were particularly distressingto families. These included interactions in which hospital staffseemed unaware of the loss or when a health care providerappeared to avoid the family following the loss. Manyfamilies experienced distress when a health care providerwould make a thoughtless comment or neglect to provideemotional support. The author of this literature review alsoidentified behaviors that were appreciated by familymembers.Some interactions were particularly helpful, such as a providertaking extra time to sit with the family or treating the remainswith great care. When a provider was tearful with the family,several parents indicated that this seemed appropriate. Also,families appreciated providers that took the time and energy toprovide them with accurate, honest information regardingtheir infant’s condition and status. One particularly usefulaspect of this article is a table summarizing behaviors thatparents found most useful and appropriate. As professionalsthat frequently work with bereaved families, geneticcounselors should be aware of the potential implicationsof their words and actions during the days, weeks andmonths following a loss. This article provides an excellentreview of the literature on perinatal loss and providespractical suggestions that may be useful for geneticcounselors when working with such families.

Brier, N. (2008). Grief Following Miscarriage:A Comprehensive Review of the Literature. Journalof Women’s Health, 17(3), 451–464.

The literature on grief and miscarriage is complicated bymethodological challenges, including differences in the

definition of a miscarriage; differences in the amount oftime that had passed since the loss; the indicators of griefthat are measured; and the tools used for these evaluations.Thus, it is difficult for practitioners to summarize andcompare the literature accurately and concisely. Thankfully,this article does the job for you. Articles included in thereview met the following criteria: related to early mis-carriage; used a standardized measure to assess griefindicators; and specified the time interval since themiscarriage. The review covers a wide range of topicsrelating to grief, including the intensity and duration ofgrief following a miscarriage; the relationship betweengender and grief intensity; and potential moderators ofgrief. Despite the thoroughness of this literature review, itremains difficult to make definitive statements regardingthe nature of grief following a miscarriage. However, theauthors are able to draw a few conclusions that aresupported by the body of literature available. It appearsthat individuals who experience an early miscarriage seemto have similar reactions to those who experience othertypes of significant losses, suggesting that guidelines forcoping with other types of losses may also be appropriatefor families that have experienced a miscarriage. It alsoappears that the intensity of grief starts to diminish by6 months after the loss and also when a subsequentpregnancy occurs. There are clear gender differences ingrief reactions following a miscarriage. The forte of thisreview may be its thorough review of the strengths andweaknesses of the studies and the author’s call for moreresearch into the nature of grief following a miscarriage. Ifa genetic counselor is looking for a summary of the currentliterature, this is a great resource.

Engelkemeyer, S.M. & Marwit, S.J. (2008).Posttraumatic Growth in Bereaved Parents. Journalof Traumatic Stress, 21(3), 344–346.

The great majority of the available literature on bereave-ment and grief focuses on the negative consequences ofloss. Of course, this is to be expected, as these consequencesare predominant and frequently need to be addressed byhealth care providers. This study, in contrast, investigates aconcept that has been suggested recently: that coping with aloss may eventually result in some degree of personalgrowth. Using multiple validated scales, the authors inves-tigated this concept among 111 bereaved parents, hypothe-sizing that a negative world view and low self-worth wouldbe inversely correlated with personal growth. They alsohypothesized that grief intensity would be inversely relatedto personal growth. The study participants were all bereavedparents who had lost a child before the age of 25 byhomicide, accident, or illness. The Post-Traumatic Growth

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Inventory was used to assess five domains of personalgrowth, including new possibilities; relating to others;personal strength; spiritual change; and appreciation of life.The World Assumptions Scale and the Revised GriefExperiences Inventory were used to evaluate partici-pants’ world views and intensity of grief. Results of thestudy indicate that parents who had positive feelings ofself-worth were more likely to experience some degreeof personal growth following the loss. Also, theintensity of the parents’ grief was inversely correlatedwith personal growth. The parents’ world views werenot significantly correlated with personal growth. Insummary, this study provides a different way to look atgrief. Although this type of information is unlikely tobe useful or appreciated when counseling a bereavedindividual, it is nevertheless important for geneticcounselors to be aware that loss may have both positiveand negative ramifications.

Rogers, C.H., Floyd, F.J., Seltzer, M.M., Greenberg, J.,Hong, J. (2008). Long-term Effects of the Deathof a Child on Parents’ Adjustment in Midlife. Journalof Family Psychology, 22(2), 203–211.

Most of the studies that have investigated bereavement andloss have been completed within a few years of the loss.However, as most genetic counselors understand, theimpact of the death of an immediate family memberreaches far beyond a few short years after the event. Rogerset al. followed parents who had lost a child at an average of18 years post-loss. This is a well-designed case-controlstudy using a cohort from the Wisconsin LongitudinalStudy. Participants had all lost at least one child, althoughthe cause of death was not used in the selection of cases.The control subjects were matched to the cases based onfamily background variables; the two groups did not differsignificantly on any of the demographic characteristicsassessed. Participants completed several well-validatedindices to assess depressive symptoms; psychologicalwell-being and sense of purpose in life; physical health;social and marital participation; and job attainment andsatisfaction. Of the 488 cases, 38% had experienced a losscaused by complications of pregnancy and childbirth orcongenital anomalies, while another 27% lost a child due toillness. The remaining 36% of participants lost a child frominjuries or poisoning. On average, middle-aged parents whohad experienced the loss of a child had higher rates ofdepressive symptoms and medical problems, and they weremore likely to have experienced marital problems thanmiddle-aged parents who had not experienced such a loss.However, there were no differences between the two groupsin terms of job attainment or income, suggesting that, in the

long-term, the loss of a child did not impact a parent’sability to obtain employment or to provide for the family.Taken together, these findings suggest that although parentsmay seem to function well within social norms severalyears after the loss, they may still experience psychologicaland physical effects from the loss. Given these findings,genetic counselors working with parents that have experi-enced a loss of a child may wish to inquire about supportsystems and to provide information about communityresources, if desired by the parents.

Dodd, P., Guerin, S., McEnvoy, J., Buckley, S., Tyrrell,J., Hillery, J. (2008). A Study of Complicated GriefSymptoms in People with Intellectual Disabilities.Journal of Intellectual Disabilities Research, 52(Pt 5),415–25.

It has been shown that people with intellectual disabilities(ID) experience feelings of grief and sadness following thedeath of a loved one. However, there is still very littleknown about the characteristics of this population’s griefresponse and whether their grief reactions represent“normal” grief symptoms or more serious “complicatedgrief” symptoms. Complicated grief is characterized bymarked depression, preoccupations with the deceased,disbelief, withdrawal and avoidance that continue forlonger than is typical. These symptoms have been shownto cause significant distress and have been associated withimpaired quality of life, poor medical outcomes, andincreased rates of suicide. This study used a matched-sample independent design to assess symptoms of compli-cated grief for 76 individuals with ID. The study sampleconsisted of 38 individuals with ID who had experiencedthe loss of a parent within the previous 2 years, and amatched group who had not been bereaved during the sametime period. There were no significant differences betweenthe bereaved and comparison group with regard todemographics or level of functioning. Complicated griefsymptoms were assessed by caregivers through TheComplicated Grief Questionnaire for People with Intellec-tual Disabilities, a previously validated measure. Approx-imately one-third of the bereaved group was reported aspresenting with more than ten of the complicated griefsymptoms whereas the number of symptoms among thecomparison group ranged from 0–2, with a vast majority(87%) reporting no symptoms. These findings demonstratethat complicated grief symptoms occur in the ID popula-tion. In addition, the researchers examined the individuals’bereavement histories in relationship to grief symptoms,including circumstances surrounding the death, the level ofsupport received, and the level of participation in bereave-ment rituals. They found a surprising positive correlation

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between involvement in bereavement rituals after the deathand the development of complicated grief symptoms. Thisfinding conflicts with the common practice of maximizinginvolvement in bereavement rituals as a means of coming toterms with a loss. The authors suggest this result may raisequestions about how best to support and involve individualswith ID in bereavement rituals. The finding also raisesquestions about other factors that may contribute tocomplicated grief symptoms in individuals with ID. Thisstudy will be useful to genetic counselors as they serve theneeds of bereaved patients with intellectual disabilities.Further research is needed to determine how complicatedgrief reactions among people with ID compare to thosewithout ID.

Sumner, L.H., Kavanaugh, K., Moro, T. (2006).Extending Palliative Care into Pregnancyand the Immediate Newborn Period: Stateof the Practice of Perinatal Palliative Care. Journalof Perinatal and Neonatal Nursing, 20(1), 113–116.

Genetic counselors have long had an integral role incounseling families who are faced with the unfortunateprenatal diagnosis of a lethal or life-limiting condition.Some studies have suggested that up to 20% of parentswho receive a prenatal diagnosis of severe chromosomalor anatomic anomalies choose to continue the preg-nancy. Previously, families only had the options oftermination of pregnancy or expectant management,usually without an active care plan or extensive supportfrom a healthcare team. This article reviews the newparadigm of perinatal palliative care, which consists ofholistic physical and emotional support for dying babiesand their families. The authors state that the primary goalof perinatal palliative care is to “help families with theprocess of making choices about pregnancy managementand after-birth care that incorporate their personal andreligious beliefs and are in the best interest of their baby”(p. 114 ). This may include a variety of specific taskssuch as creating a birthing or care plan for the baby afterbirth or making memories through experiences or memen-tos that are meaningful to the family. It may also involvebereavement support or referral to community resources.Perinatal palliative care is provided by a multidisciplinaryteam that may include physicians, nurses, social workersand clergy among other health professionals. Care opti-mally begins at the time of prenatal diagnosis andcontinues through the bereavement process. Geneticcounselors in the prenatal setting have a unique opportu-nity to discuss perinatal palliative care as a viable optionwith families, keeping in mind site-specific resources. Inaddition, given our established roles in promoting informed

choices and adaptation to a risk or condition, as well aspsychosocial counseling, our profession seems uniquelysuited to play a direct role in perinatal palliative care. Thespecific role of a genetic counselor in perinatal palliative carehas not been reported in the literature and warrants furtherstudy.

Munson, D. & Leuthner, S.R. (2007). Palliative Carefor the Family Carrying a Fetus with a Life-limitingDiagnosis. Pediatric Clinics of North America, 54(5),787–798.

In the past 20 years, there has been a growing awarenessof the importance of palliative care for the unborn andnewborns with life-limiting conditions. The number ofperinatal palliative care programs is increasing in theUnited States and, recently, both the American Academyof Pediatrics and the Institute of Medicine have recog-nized this model of care. However, there is little researchor information regarding the state of practice of perinatalpalliative care. The authors of this article offer aframework from their experience for the necessarycomponents of this type of care beginning from the timeof prenatal diagnosis of a life-limiting fetal conditionthrough the pregnancy, delivery, life and death of thebaby, and bereavement period. The authors providespecific interventions for health care providers at eachstage in accordance with the holistic focus of palliativecare on emotional, spiritual, social and symptom supportfor dying babies and their families. With respect to thetime of prenatal diagnosis, they offer insight on how toengage families in a dialog about the option of perinatalpalliative care along with other options such as termina-tion of pregnancy in a safe and nondirective environ-ment. During the pregnancy, they discuss anticipatoryguidance for these families as well as how to facilitateparental attachment with their unborn child. They reviewthe generation of a birth plan that includes the family’smedical and non-medical goals and questions. Finally,there is discussion about postpartum care, testingoptions, and bereavement support after a perinatal death.It is probable that genetic counselors in the prenatal orpediatrics settings will encounter families who havechosen a palliative care model. This article providesexcellent interventions for health care providers frommultiple disciplines to increase their comfort level withthese families and to help families grieve and heal. Theprimary limitation of this article is that there is littleresearch available that has assessed the specifics of thisapproach to perinatal palliative care; however, thislimitation is due to the relatively recent developmentof this paradigm of care.

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