vedrana vejzovic going through a colonoscopy and living with inflammatory bowel disease
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VEDRANA VEJZOVICGOING THROUGH A COLONOSCOPY AND LIVING WITH INFLAMMATORY BOWEL DISEASEChildren’s and parents’ experiences and evaluation of the bowel cleansing quality prior to colonoscopy
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G O I N G T H R O U G H A C O L O N O S C O P Y A N D L I V I N G W I T H I N F L A M M A T O R Y B O W E L D I S E A S E
Malmö University Health and Society, Doctoral Dissertation 2016:5
© Vedrana Vejzovic 2016
ISBN: 978-91-7104-681-9 (print)
ISBN: 978-91-7104-682-2 (pdf)
ISSN: 1653-5383
Holmbergs, Malmö 2016
VEDRANA VEJZOVIC GOING THROUGH A COLONOSCOPY AND LIVING WITH INFLAMMATORY BOWEL DISEASEChildren’s and parents’ experiences and evaluation of the bowel cleansing quality prior to colonoscopy
Malmö University, 2016Faculty of Health and Society
This publication is also available at: www.mah.se/muep
In memory of my son Dino, and to my family and all others who believed in me!
CONTENTS
ABSTRACT ......................................................................... 9
LIST OF PUBLICATIONS I-IV ............................................... 12
ABBREVIATIONS ............................................................... 13
INTRODUCTION ............................................................... 15
BACKGROUND ................................................................ 17 Inflammatory bowel disease in children ....................................... 17 Incidence of paediatric IBD ......................................................... 17 Diagnosis and treatment ............................................................. 18 Colonoscopy in children ............................................................. 18
Preparation prior to colonoscopy............................................ 19 Bowel cleansing prior to colonoscopy ..................................... 20
Children (10-18) with IBD ........................................................... 20 Parents’ role in paediatric care.................................................... 22 The child and the child’s perspective ............................................ 24 Rationale ................................................................................... 26
AIMS ............................................................................... 27
METHOD ......................................................................... 28 Settings ..................................................................................... 30 Participants ................................................................................ 30 Procedures (I-IV) ........................................................................ 31 Data collection ........................................................................... 34
Interviews (I, II, & IV) ............................................................. 34 Bowel cleansing quality ......................................................... 35 Questionnaires ...................................................................... 36
DATA ANALYSIS ....................................................................... 36 Qualitative method ..................................................................... 36 Quantitative method ................................................................... 38 Pre-understanding ...................................................................... 39
ETHICAL CONSIDERATIONS ............................................... 41
FINDINGS ........................................................................ 43 Children’s experiences of colonoscopy (I & III) .............................. 43 The parents’ experiences when their child undergoes a colonoscopy (II & III) ................................................................... 49 Bowel cleansing quality with PEG or NaPico (III) ........................... 50 The meaning of the children’s lived experience of IBD (IV) ............. 53
METHODOLOGICAL DISCUSSION ....................................... 55 Participants................................................................................ 56 Interviews .................................................................................. 57 Trustworthiness .......................................................................... 58 Reliability and validity ................................................................ 59
GENERAL DISCUSSION OF FINDINGS ................................. 60
CONCLUSION .................................................................. 66
CLINICAL IMPLICATIONS .................................................... 67
FURTHER RESEARCH .......................................................... 69
SVENSK SAMMANFATTNING ............................................. 70
ACKNOWLEDGEMENTS ..................................................... 73
REFERENCES ..................................................................... 76
APPENDICES ..................................................................... 87 Appendix I ................................................................................ 88 Appendix II ............................................................................... 89
PAPERS I --- IV .................................................................... 91
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ABSTRACT
This thesis focuses on children aged 10-18 years with symptoms of, or diagnosed with, inflammatory bowel disease (henceforth referred to as IBD). Before the disease can be diagnosed, a child must undergo several procedures, with colonoscopy as an established investigation, including bowel cleansing, which is crucial for the safe examination of the intestine. The prevalence of paediatric IBD is increasing worldwide, which will augment the number of paediatric colonoscopies. When the recommended laxative polyethylene glycol (PEG) was used for bowel cleansing, the children and their accompanying parents experienced the procedure as difficult due to the large volume of bad-tasting PEG. Once IBD is diagnosed, the children must undergo lifelong medical treatment, which entails several follow-up colonoscopies. Furthermore, IBD is a chronic illness with an unpredictable activity pattern that can have a negative impact on the children’s quality of life. One of the aims of this thesis was to explore a child/child’s perspective of going through a colonoscopy and child’s perspective of living with IBD. A further aim was to investigate whether sodium picosulphate (NaPico) can be used as an adequate alternative when the bowel is cleansed prior to colonoscopy in children. Three of the studies were interview studies (Papers I, II, & IV) with children and parents as participants. The data from 17 children and 12 parents (Papers I & II) was analysed using content analysis, and a phenomenological hermeneutic method was used when 7 children (Paper IV) were interviewed. The children’s experiences prior to colonoscopy (Paper I) were identified as belonging to an overall theme, A private affair, which could be divided into four categories: Preparing yourself, Mastering the situation, Reluctantly participating, and Feeling emotional support. The result from the parents’
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experiences when their child is undergoing an elective colonoscopy was structured into one theme, Charged with conflicting emotions, with three categories: Being forced to force, Losing one’s sense of being a parent, and Standing without guidance (Paper II). The initial findings from these empirical studies undertaken served as a preparation for another study, aimed at comparing the quality of bowel cleansing using either PEG or sodium picosulphate (NaPico) in relation to the tolerability and acceptance of the laxatives among children and their accompanying parents (Paper III). This study was a randomised controlled trial (RCT) that was conducted as an investigator-blinded study within the Department of Paediatrics at a university hospital in Sweden (www.clinicaltrials.gov, identifier NCT02009202). A total of 72 children were randomly placed into one of two groups (PEG or NaPico). The Ottawa Bowel Preparation Quality Scale (OBPQS) was used to evaluate the quality of the bowel cleansing. Two different questionnaires were used to evaluate both the acceptability and the tolerability of the laxatives. In total, 67 protocols were analysed according to the OBPQS. No significant difference in bowel-cleansing quality was detected between the two groups. However, rates of acceptability and tolerability were significantly higher in the NaPico group than in the PEG group, according to both the children and the parents. Finally, in order to illuminate the meaning of children’s lived experience of IBD, an interview study with seven children was conducted. The meaning of their lived experience of IBD was interpreted as A daily struggle to adapt and to be perceived as normal. This interpretation was discussed in relation to Ingmar Pörn’s theory of adaptedness (Paper IV). The findings point to the conclusion that both children’s and parents’ perspectives are important, in order to improve the paediatric colonoscopy. The children (10-18 years) with symptoms of, or diagnosed with, IBD were reluctant to talk about their problems, including colonoscopy. However, they were willing to share their experiences in order to help other children with similar problems, or in order to influence and improve paediatric care. It emerged that both children and parents need to feel confident in their dealings with healthcare professionals and to feel that healthcare professionals take their opinions seriously when preparing the child for colonoscopy.
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It is also important that the children have the opportunity to choose the bowel-cleansing protocol. NaPico can be recommended as the option for bowel cleansing in children aged 10 years and older. The meaning that can be extracted from the children’s experience of IBD is that they are struggling to adapt and to be perceived as normal. This is a conscious process entailing a confrontation with various problems, such as ambitions and goals that are hard to achieve, due to reduced abilities resulting from the illness or from an insufficiently adapted environment.
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LIST OF PUBLICATIONS I-IV
This thesis is based on the following papers, referred to in the text by their Roman numerals I-IV. The papers have been reprinted with permission from the respective publishers.
I. Vejzovic, V., Wennick, A., Idvall, E., & Bramhagen, A. C. (2014). A private affair: children’s experiences prior to colonoscopy. Journal of Clinical Nursing, 24, 1038–1047.
II. Vejzovic, V., Bramhagen, A. C., Idvall, E., & Wennick, A. (2015). Parents’ experiences when their child is undergoing an elective colonoscopy. Journal for Specialists in Pediatric Nursing, 20,123–130.
III. Vejzovic, V., Wennick, A., Idvall, E., Agardh, D., & Bramhagen, A. C. (2015). Polyethylene Glycol- or Sodium Picosulphate-Based Laxatives before Colonoscopy in Children. Journal of Pediatric Gastroenterology and Nutrition, 62(3), 414-419.
IV. Vejzovic, V., Bramhagen, A. C., Idvall, E., & Wennick, A. Swedish Childrens’ Lived Experience of Inflammatory Bowel Disease. (Submitted 2016)
Contributions to the publications listed above: V.V. initiated the design, planned the studies, collected the data, performed the analysis, and wrote the papers with support from the co-authors.
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ABBREVIATIONS
CD Crohn’s disease ESPGHAN IBD Working Group of the European Society for
Paediatric Gastroenterology, Hepatology and Nutrition
FCC Family-centered care GI Gastrointestinal IBD Inflammatory bowel disease OBPQS Ottawa Bowel Preparation Quality Scale PEG Polyethylene glycol RCT Randomised controlled trial NaPico Sodium picosulphate UC Ulcerative colitis UNCRC United Nations Convention on the Right of the
Child HRQoL Health-related quality of life
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INTRODUCTION
Chronic illnesses and medical conditions in children are often associated with a risk for emotional and behavioural problems. It is well known that IBD, comprising ulcerative colitis (UC) and Crohn’s disease (CD), is a common chronic illness among children and young people and that it is increasing globally (e.g., Sawczenko et al. 2001; Kugathasan et al. 2003; Turunen et al. 2006; Pant et al. 2013). In addition to standard diagnostic laboratory testing, it is recommended that the children undergo both an upper endoscopy and a colonoscopy at the time of the initial investigation in order to determine the diagnosis of IBD (ESPGHAN 2005). As a result of this recommendation, there is an expected increase in the number of children who must undergo a colonoscopy due to suspected IBD. The colonoscopy is a medical investigation which can be experienced as unpleasant by children, because of the large volume of laxative needed when the generally recommended polyethylene glycol (PEG) is used to prepare the bowel prior to colonoscopy (e.g., Turner et al. 2009; Di Nardo et al. 2014; Hagiwara et al. 2015). The role of colonoscopy is crucial for the diagnosis and monitoring of paediatric gastroenterology diseases with as clean a bowel as possible for the appropriate detection of bowel disorders (e.g., Turcotte et al. 2012; Elitsur et al. 2013). However, only a limited number of randomised controlled trials (RCT), with a limited number of children as participants, have been conducted in this area, which is a problem. Due to this, it is difficult to find the one laxative which has a good bowel cleansing quality and which is at the same time tolerated by and acceptable for children.
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It is also well known that children with IBD must undergo lifelong treatment and that IBD might have a negative impact on the children’s life. These issues have been highlighted by several reports about the health-related quality of life (HRQoL) of children with IBD (e.g., Van Der Zaag-Loonen et al. 2004; Mackner et al. 2006; Hommel et al. 2008; Gray et al. 2011; Ross et al. 2011; Mueller et al. 2015). However, the knowledge about children’s lived experience of IBD is sparse (Nicholas et al. 2007).
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BACKGROUND
Inflammatory bowel disease in children IBD is a term used to classify a group of chronic diseases, two of the most common of them being UC and CD. UC occurs in the large bowel and CD can impact any portion of the gastrointestinal tract (Dubinsky 2008). Previous studies have shown that IBD is present in the adolescent age group in 25 per cent of the cases. The prevalence is greater in adolescents between the ages of 15 and 19, with a median age of 15 years (Kappelman et al. 2007). The exact factors that trigger these diseases are still unclear, but research indicates that IBD results from an interaction of genetic, host immunity, and environmental factors, with a positive family history of the disorder as one of the most important risk factors, and with abdominal pain, diarrhoea, weight loss, gastrointestinal (GI) bleeding, growth failure, and anaemia as the most common symptoms (ESPGHAN 2005). Incidence of paediatric IBD The overall incidence of paediatric IBD is rapidly increasing worldwide (Sawczenko et al. 2001; Kugathasan et al. 2003; Turunen et al. 2006; Perminow et al. 2009; Malaty et al. 2010; Malmborg et al. 2013; Pant et al. 2013; Ashton et al. 2014). For example, in the United States, the incidence was doubled between 1991 and 2002 (Malaty et al. 2010), and in southern England it continues to increase, with a rise of 50 per cent in the last decade, and the cause of this increase remains unclear (Ashton et al. 2014). Similar trends have been reported in Sweden, with reports from the Stockholm region showing that 133 children were diagnosed with IBD between 2002 and 2007. This was a significant (4-8 per cent) increase in annual incidence (Malmborg et al. 2013), above that observed between 1990 and 2001 (Hildebrand et al. 2003).
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Diagnosis and treatment The children with symptoms of IBD undergo standard diagnostic laboratory testing for, for example, anaemia, erytrocyte sedimentation rate, and fecal calprotectin. In contrast to adults, children with a milder form of the disease may present no laboratory abnormality (Rabizadeh & Dubinsky 2013). Children with symptoms of IBD undergoing an initial evaluation for IBD must often be subjected to a series of diagnostic tests, including abdominal CT, upper endoscopy, and colonoscopy with biopsies. In many paediatric centres, children undergo a combined upper endoscopy, colonoscopy, and terminal ileoscopy as the initial diagnostic procedure (ESPGHAN/NASPGHAN 2007). The colonoscopy examination is today the gold standard for the diagnosis of paediatric IBD (ESPGHAN 2005). The treatment of children with IBD focuses on the individual patient, taking into account both the symptoms and the HRQoL, with less powerful medication being tested first in order to minimise its side effects (Rabizadeh & Dubinsky 2013; Rosen et al. 2015). The children have regular contact with medical care for their treatment, involving, for example, medication that requires regular checks of blood values, a dietary regime, and in some cases surgery, as well as follow-ups of IBD, including several endoscopies (Hommel et al. 2008; Greenley et al. 2010). The side effects of the medication may contribute to additional difficulties for the children in their daily life (Greenley et al. 2010). Colonoscopy in children Colonoscopy is a routine endoscopic non-surgical investigation of the colon and the outermost part of the small intestine (ESPGHAN 2005). The investigation is considered effective and safe for children of all ages, including premature newborns (ESPGHAN 2005; Fried & Welch 2013), and it is normally performed while the child is under anaesthesia (Heus et al. 2005; Devitt et al. 2008; Triantafillidis et al. 2013). Despite of possible complications, the role of colonoscopy is crucial for the diagnosis and monitoring of paediatric gastroenterology diseases with as clean a bowel as possible for the appropriate detection of bowel disorders (e.g., Turcotte et al. 2012; Elitsur et al. 2013).
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Children who need to undergo a colonoscopy often endure long periods of gastrointestinal (GI) symptoms (Mamula et al. 2003; Mackner et al. 2004; Thakkar et al. 2008; Rabizadeh & Dubinsky 2013). A safe, informative, and effective colonoscopy, performed in a child-friendly atmosphere with minimal distress to the child, is the recommended practice in the care of children (ESPGHAN 2005). It is, as already pointed out, generally a safe examination; yet it also has the potential of complications. The adverse effects of sedatives, perforation, infection, and bleeding have been described as possible risks of colonoscopy (Thakkar et al. 2015). There is, however, limited paediatric data showing complication rates, and the frequency of these complications remains unclear, because previous studies usually involved a limited number of procedures (ibid.). Preparation prior to colonoscopy Preparation prior to colonoscopy has two different aspects, one of which is the practical preparation of the examination itself, while the other one is the psychological preparation. Children experience anxiety associated with medical procedures, which can influence their memories of them (Rocha et al. 2009). Thus, it is widely recognised that children need to be well prepared before undergoing stressful medical procedures, and the goal of this preparation is to minimise their level of anxiety (Coyne et al. 2006; Li & Lopez 2007; Pelander & Leino-Kilpi 2009; Coyne & Gallagher 2011). The psychological preparation before endoscopy can significantly decrease child and parental anxiety (Mahajan et al. 1998). This was shown in a study with children aged 6 to 19 involved in a randomised controlled trial (RCT) with the aim to investigate the effects of a programme of psychological preparation for children undergoing endoscopy. Furthermore, psychological preparation, including therapeutic play, was recommended in order to reduce fear, misunderstandings, and other forms of psychological stress when 20 children, aged 4 to 15, were hospitalised for endoscopy (Tanaka et al. 2010). Children’s preparation prior to colonoscopy can entail unique challenges for healthcare professionals, who must have knowledge of the development and psychological needs of each age group of patients entrusted into their care (Heard 2008). There are several studies which found that the intake of large volumes of bad-tasting laxative was the most difficult part of the procedure prior to colonoscopy from both a child’s and a parents’ perspective (Turner et
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al. 2009; Elitsur et al. 2013; Friedt & Welsch 2013; Di Nardo et al. 2014; Hagiwara et al. 2015). Bowel cleansing prior to colonoscopy The ESPGHAN working group generally recommend polyethylene glycol with electrolytes (PEG) as a standard laxative, due to its cleansing efficacy (Mathus-Vliegen et al. 2013). The recommended intake of PEG is 25-35 ml/kg body-weight per hour until clear intestinal fluid is obtained, either orally or by nasogastric tube (Millar et al. 1988). A variety of bowel cleansing regimens have been evaluated, but the most common in children are PEG (Abbas et al. 2013; Elitsur et al. 2013; Walia et al. 2013; Terry et al. 2013; Pall et al. 2014; Sorser et al. 2014), oral sodium phosphate (El-Babba et al. 2006; Hasall et al. 2007), or sodium picosulfate (NaPico) (Worthington et al. 2008; Turner et al. 2009; Di Nardo et al. 2014). In contrast to conventional PEG, the use of NaPico requires a smaller volume of laxatives for bowel cleansing and appears to be better tolerated by children (Turner et al. 2009; Khour et al. 2010; Di Nardo et al. 2014). Regarding colonoscopy preparation in children with a median age of 12 years, a total of 81 per cent (27/33) of the children were satisfied with NaPico and 58 per cent (16/18) were satisfied with PEG (Khour et al. 2010). However, the limitation of these studies is the relatively small number of participating children. Thus, NaPico is recommended only as a possible alternative (Mathus-Vliegen et al. 2013). Children (10-18) with IBD Even without the presence of a chronic illness, children between 10 and 18 years undergo a challenging life phase because of changes in both the psychological and the physical realm. Bearing in mind that IBD is a chronic illness with unpredictable activities often diagnosed in adolescents, it is not surprising that IBD has a negative impact on the children’s daily life. Results from studies which compare children with IBD and healthy children showed the negative psychosocial effects of IBD on children, but also that this group is at risk of more difficulties, such as depression, anxiety, and social and school difficulties, than healthy children (e.g., Mackner & Crandall 2006; Fishman et al. 2010; Ross et al. 2011; Mackner et al. 2012). Similar risks were found in children with other chronic illnesses (Mackner & Crandall 2007).
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There are several studies about the HRQoL, which means the physical, emotional, and social aspects of the health perception and health functioning, of children with IBD (e.g., Ryan et al. 2013; Engelmann et al. 2015), and about the overall QoL of these children (e.g., Loonen et al. 2002; Ross et al. 2011; Ryan et al. 2013; Mueller et al. 2015; Varni et al. 2015). Children (7-18 years) with IBD who reported lower HRQoL had more IBD-related hospital admissions, psychology clinic visits, or telephone contacts with the medical clinician over a 12 months period than their healthy peers (Ryan et al 2013). A meta-analytic review of the psychosocial adjustment of youths with IBD by Greenley et al. (2010) showed that the QoL was perceived to be lower by both children and their parents compared to healthy controls. However, it was higher, or marginally higher, compared to children with other chronic illnesses (ibid.). When 765 children diagnosed with IBD, mean age of 14, 3 years, were screened in order to understand the relation between IBD and depressive symptom profiles, the result showed that approximately 75 per cent of the participating children had a mild depression (Szigethy et al. 2014). In the studies which have investigated self-esteem among children with IBD, the results vary. Some studies with comparison groups found that children with IBD had significantly lower self-esteem than their healthy peers (Engström 1999; Mackner & Crandall 2005), and some found that it was in the same range as that of their healthy peers (Lindfred et al. 2008). Quality of life among children and adolescents with IBD is an important clinical outcome variable that requires a better understanding of the children’s issues, but it is also important to hear the voice of the children themselves. However, few studies have illuminated children’s lived experience of IBD. In a study by Nicholas et al. (2007), 44 children (7-19 years old) were interviewed about how they understood and made sense of IBD and how IBD affected their daily life. When the disease was active, discomfort and concern associated with the symptoms were described. A child might spend a great deal of time in the toilet and withdraw from others in order to avoid negative comments, which might, in turn, limit his/her social activities (ibid.). As children are often diagnosed at school age, requiring the toilet frequently during school hours can be a great burden, especially since healthy children have also been found not to use school toilets during school hours as often as they would like (Norling et al. 2015).
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A total of 20 children diagnosed with IBD, mean age 12, 2 (range 7-16), were interviewed about what coping strategies they used to handle their disease and about the effect of IBD on their everyday life. The study found that some children were reluctant to discuss their disease and that they denied that IBD had any impact on their daily life, whereas some children thought that they could affect the course of IBD but also expressed that IBD had a stressful effect on them (Engström 1999). Another Swedish study, with 77 children (11-16 years old), has shown that children often express well-being and an ability to manage IBD, but that they are also influenced by disease-related symptoms such as a poor physical condition and negative sleep patterns (Lindfred et al. 2012). This thesis focuses on children aged between 10 and 18, and the children in this age group are in an adolescent phase, which can be classified into early, mid and late adolescence (McIntosh et al. 2003). Early/mid adolescence typically means emotional separation from one’s parents and the start of a strong identification with one’s peers. Late adolescence refers to the child’s development of social autonomy and intimate relationships (ibid.). Since the illness (IBD) makes its appearance in adolescence, that is, during a period of major physical, psychological, and social developmental changes, with symptoms such as diarrhoea and abdominal pain, one possible explanation of the children’s problems might be linked to symptoms of the illness which can be socially embarrassing and humiliating (Engström 1999). Children with IBD do not speak openly about their abdominal symptoms, keeping their thoughts on the diagnosis or the symptoms to themselves (Casati et al. 2000; Nicholas et al. 2007). Similar results have been shown in young adults. Five young adults (18-24 years of age) were interviewed about their perspective of living with IBD, in a study using the phenomenological method (Daniel 2001). The young adults spoke of the fear and humiliation of losing bowel control in social or public environments, of reduced living space due to dependency on being near a toilet, and of the importance of support and of being listened to and believed by the healthcare professionals (ibid.). Parents’ role in paediatric care Parents have an important role in a child’s life, and previous studies have shown that parents feel responsible for their child’s physical care and
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emotional welfare and are willing to provide basic paediatric care when their child is sick (Coyne et al. 2006; Power & Franck 2008; Coyne 2013; Stuart & Melling 2014; Nilsson et al. 2015). Nevertheless, parents are reluctant to perform care if it causes pain or discomfort to their children (Coyne 2013; Stuart & Melling 2014), and they often feel a lack of individual preparation for paediatric care (Chorney & Kain 2010; Andersson et al. 2012; Bray et al. 2012; Ford et al. 2012). Chronic illnesses in childhood, for example, diabetes and IBD, have been recognised as having an impact not only on children, but on the daily lives of families as well (Wennick et al. 2009; Gray et al. 2013). A poor family functioning in the domains of affective involvement may predispose some children with IBD for depressive symptoms (Gray et al. 2013). Parental presence during a child’s hospital stay may reduce the child’s emotional stress and increase the child’s sense of safety and cooperativeness (Aein et al. 2009). However, self-reported parenting stress can affect children with IBD and may contribute to elevated adolescent-reported depressive symptoms (Guilfoyle et al. 2014). In order to meet the requirements of the parental role, parents need adequate information when their child is in hospital (Byczkowski et al. 2014; McGarry et al. 2014). They consider information as the most essential factor for being able to cope with their children’s situation (Andersson et al. 2012). This is particularly important because children often have many questions about a forthcoming medical procedure or treatment, and it is usually the parents who provide their children with the required information (Gordon et al. 2011). For example, the information on medication intake before a paediatric endoscopy has been shown to be insufficient, and the parents would appreciate a more detailed description of the type of sedation used during the procedure (Khour et al. 2010). On the other hand, in a study with 128 parents of children undergoing colonoscopy, only 30 per cent of both children and parents responded that they preferred a more detailed description of the procedure (Hagiwara et al. 2015). However, a total of 60 per cent of the parents reported that they were concerned about the endoscopic procedure (ibid.). Parenting a child with a chronic illness may be experienced as complex because the parents often have difficulty balancing caring for their child with other responsibilities, and as a result they may experience stress and worries
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(Eccleston et al. 2015). Thus, the parents have their own concerns when their child is sick, and their perspective of the child’s health or well-being is not necessarily valid for the child’s perspective. The child and the child’s perspective Children have their own way of experiencing things, and research-based knowledge about children’s experiences can further help healthcare professionals to better understand the children’s world of experiences (Korteslouma et al. 2003; Alderson & Morrow 2011). Children have a right to participate, receive information, and make health-related decisions. Paediatric care needs to be of good quality; it should meet the children’s needs of safety, and the best interest for the child should always be a priority in all actions concerning children (UNCRC 1989). Historically, children have been excluded from the research process or decision making regarding their own health care (Christensen & James 2008; Alderson & Morrow 2011; Beauchamp & Childress 2013). One reason for this could be that research with children as participants raises many ethical questions (Alderson & Morrow 2011; Nilsson et al. 2015); another reason may be that children have been seen as vulnerable and without competence due to their age and immaturity (Beauchamp & Childress 2013). What is the best interest for the child has been considered from a child perspective, which is based on parents’ and professionals’ perceptions of the child’s desires and experiences (Sommer et al. 2010). That this perspective is not enough has been shown in previous research. Children’s experiences in paediatric care of not being listened to, or not being supported, and their desire to have more of a say, are reported by several researchers (Coyne 2006; Coyne 2008; Coyne & Gallagher 2011). When children describe the factors which may restrict them from actively participating in their care, they include, for example, fear of causing trouble by asking questions, fear of being ignored or disbelieved, and the difficulty to understand medical terminology (Coyne 2008). Lack of involvement in their own care can result in the children feeling unprepared for the necessary procedures, which can increase fears and anxiety (Coyne 2006).
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According to some studies, children have positive experiences of being involved in discussions about their own care, which helps prepare them for what to expect and, thus, makes them feel less anxious (Coyne & Gallagher 2011; Nilsson et al. 2015). Children also appreciate being given options with regard to their care, and they feel valued when being asked to make decisions (Moules et al. 2010). In view of the recommendation that all treatment and procedures should be based on respect for the child’s autonomy and integrity and that it should be performed with the child’s active participation (UNCRC 1989), today children are asked about their view on many aspects of their lives. The child’s perspective, which means the child’s own voice, can give the child an opportunity to express his/her own perceptions, desires, and understanding of the world (Söderbäck et al. 2011; Nilsson et al. 2015). The child’s perspective is an important precondition when discussing paediatric care, in order to take into account the child’s reflections on what would be the optimal care, for example, during an unpleasant procedure (Coyne 2013; Nilsson et al. 2015). A good communication between the child and the nurse can be the key to including the child in his/her health care. This may, in turn, help healthcare professionals to increase the quality of child care (Pelander et al. 2009; Alderson & Morrow 2011; Coyne & Gallagher 2011; Nilsson et al. 2015). Previous research has shown that the children’s participation in consultations can improve their understanding of the illness they have (Coyne & Gallagher 2011) or reduce the perception of pain during painful procedures (Runeson et al. 2002; Nilsson et al. 2011). It is widely recognised that children need to be well prepared in their own individual way before, for example, undergoing stressful medical procedures. Thus, the goal of this preparation is to minimise the level of anxiety (Coyne et al. 2006; Li & Lopez 2007; Pelander & Leino-Kilpi 2009; Coyne & Gallagher 2011). Both a child and a child’s perspective are used today in paediatric nursing and research, and both are focused on children (Christensen & James 2008; Söderbäck et al. 2011; Nilson et al. 2015). During the last twenty years, there has been an active discussion around the child perspective in paediatric care, and family-centered care (FCC) has been quite central in these discussions. FCC is based on partnerships between children, families, and healthcare providers, and it has been considered the best way to provide quality care to
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children in hospital, despite a lack of evidence about its effectiveness (Shields et al. 2007). Since the children participate more and more in research, knowledge about the importance of their own experience and perception of health care has increased. Due to this, the possibility of redirecting family-centred care to a child-centred care approach has been discussed, since the child-centred approach "incorporates the rights of the child to participate in all aspects of health care delivery in conjunction with the need of their family" (Söderbäck et al. 2011, p. 104). Rationale Apart from the knowledge that the increased incidence of IBD will augment the number of paediatric colonoscopies and that children have difficulties with the intake of laxative, there is still a lack of knowledge about colonoscopy from both the children’s and the accompanying parents’ perspective. The need of a laxative which has a significantly good quality of bowel cleansing, and which can simultaneously be tolerated and found acceptable by children, has also been recognised, but the clinical studies in this area are still sparse. Further, the symptoms of CD and UC are often described in the literature as contributing to the negative psychosocial effects of IBD on children’s life. Previous studies conducted in relation to quality of life (e.g., Loonen et al. 2002), coping behaviours (e.g., Schwenk et al. 2014), psychological distress, and school difficulties (e.g., Mackner et al. 2012), have often used quantitative methodology, which has made it difficult to illuminate the children’s feelings and thoughts. In conclusion, more studies from a child/child’s perspective, using both a qualitative and a quantitative approach, would help to reduce the gap that exists in contemporary literature.
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AIMS
The overall aim of this thesis was to explore the child/child’s perspective of going through a colonoscopy and the child’s perspective of living with IBD. A further aim was to investigate whether sodium picosulphate (NaPico) can be used as an adequate alternative when the bowel is cleansed prior to colonoscopy in children. The specific aims were:
o To illuminate children’s experiences prior to colonoscopy (I)
o To illuminate parents’ experiences when their children
undergo elective colonoscopy using a PEG-based regime for bowel preparation (II)
o To compare the quality of bowel cleansing using either PEG or NaPico in relation to the tolerability and acceptance of the laxatives among children and their parents (III)
o To illuminate the meaning of children’s lived experience of inflammatory bowel disease (IV)
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METHOD
In this thesis, a combination of qualitative and quantitative methods was used. The relative strengths and weaknesses of qualitative and quantitative data in reaching the objectives of a study, influence the choice of which method to use when collecting and analysing data (Patton 2002).
In order to illuminate different perspectives of the children’s and their parents’ experiences of the children’s preparation prior to colonoscopy (I, II) and to illuminate the children’s lived experiences of IBD (IV), a qualitative approach was applied, with data collected through interviews. Finally, in order to compare the quality of bowel cleansing using either PEG or NaPico in relation to the tolerability and acceptance of the laxatives among children and their parents, a quantitative approach was applied (III). In this study, data was collected through a randomised controlled trial, conducted as an investigator-blinded study when investigating bowel cleansing quality, and through questionnaires where the tolerability and acceptance of the laxatives were investigated. An overview of the designs and methods is shown in Table 1.
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Table 1: Overview of the studies included in the thesis
Study I Study II Study III Study IV
Design Qualitative design Qualitative design Quantitative design Qualitative design
Aim To illuminate
children’s
experiences prior to
colonoscopy.
To illuminate
parents’ experiences
when their children
are undergoing an
elective
colonoscopy
performed using
polyethylene glycol-
based regimes for
bowel preparation.
To compare the
quality of bowel
cleansing using
either polyethylene
glycol or sodium
picosulfate in
relation to the
tolerability and
acceptance of these
laxatives among
children and their
caregivers.
To describe the lived
experiences of IBD in
children.
Participants n=17 children n=12 parents n=71 children
n=71 parents
n=7 children
Data collection Individual
interviews
Individual
interviews
Randomised
controlled trial
Individual interviews
Time for data
collection
2012 2013 November 2012 -
June 2014
2015
Data analysis Qualitative content
analysis
Qualitative content
analysis
Descriptive
statistics; Mann-
Whitney test;
Power; Kappa
statistic
Phenomenological
hermeneutics
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Settings All the children were recruited from a university hospital in southern Sweden which caters for about 1.2 million inhabitants, that is, 13 per cent of the Swedish population (I-IV). Study III was conducted at the university hospital in southern Sweden. The gastroenterology department for children and adolescents is responsible for the treatment and follow-up of children and adolescents with conditions affecting the gastrointestinal tract. Participants In order to illuminate children’s experiences prior to colonoscopy (I), data was collected from 17 children of both genders (12 girls and five boys) of an age ranging from 10 to 17 years (md = 13). The overall inclusion criteria were: children aged 10-18 years and the ability to speak Swedish. Further inclusion criteria were: suspected IBD and first colonoscopy (I). With the intention of illuminating parents’ experiences when their children undergo an elective colonoscopy (II), data was collected from 12 parents (mothers n=11, and father n=1). Participants were 30–64 years old (md = 39). The inclusion criteria for parents were: parents with children aged 10-18 years and who were present when their child underwent the first elective colonoscopy performed using a PEG-based regimen, and who understood and spoke the Swedish language (II). In order to compare the quality of bowel cleansing using either PEG or NaPico in relation to the tolerability and acceptability of these laxatives among children and their parents (III), data was collected from 71 children and 71 accompanying parents. The overall inclusion criteria for children in this study were: age 10-18 years, suspected IBD or known IBD, elective colonoscopy, non-kidney disease or perforated bowel, and the ability to speak Swedish. The inclusion criteria for parents were: parents whose child was included in the RCT study, who were present when the child’s bowel was prepared prior to colonoscopy, and who understood and spoke the Swedish language (III). The demographic data for the children in this study is shown in Table 2.
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Table 2 Gender, age, and reason for colonoscopy PEG
n=35
NaPico
n=36
Gender Boys 17(47.2) 19(52.8) N(%) Girls 18(51.4) 17(48.6) Age mean
(SD)
15.29(1.88) 14.64(2.40)
Reason for colonoscopy
(%)
Known IBD 4(36.4) 7(63.6) Suspected
IBD
31(51.7) 29(48.3)
In order to illuminate the meaning of the lived experience of children having the diagnosis IBD (IV), data was collected from a sample of seven children, three girls and four boys, aged 13-18. These children were recruited from the sample participating in the RCT (III) and received a diagnosis of IBD between 2012 and 2014. A total of 26 children who were involved in the RCT received a diagnosis, and at the time of mailing information letters (2015), a total of 22 children were < 19 years of age and all of them were, consequently, asked to participate. Procedures (I-IV) Children and parents were given written and verbal information about the respective studies (I-IV), but the procedure varied somewhat between the studies. A gastroenterological nurse, who was involved in the children’s admissions to the hospital prior to the colonoscopy, informed the children and their parents about the possibility to be interviewed about their experiences of the colonoscopy, and requested their approval regarding the first author telephoning them for further verbal information about the studies (I & II). Written information about study III, for both the children and their parents, was attached to the letter of invitation to the colonoscopy. Before the preparation prior to the colonoscopy, the responsible gastroenterological nurse, who was not involved in the child’s preparation prior to the
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colonoscopy but was responsible for the registration of the children, provided verbal information about this study.
The children and parents who wished to participate (I, II, IV) were also informed that the studies would be conducted by the first author, who was not involved in the child’s care. The participants in all the studies were informed that participation was voluntary and that they could withdraw at any time without any consequences for the child. Written informed consent was obtained from parents and children older than 15 years. In families with younger children, the parents gave written informed consent and the children gave their verbal assent (I, III, IV). The participants in study III were randomised into two groups with computer-generated randomisation: receiving either PEG (Group 1) or NaPico (Group 2). Information about group number, bowel cleansing regimen, instructions for intake, and two questionnaires regarding acceptance and tolerance of the allocated bowel cleansing solution, were provided to both the children and their parents in numbered closed envelopes. The envelopes were opened after written informed consent had been obtained. The laxative solution was prescribed by a physician who was not involved in the colonoscopies. All colonoscopies were performed by one and the same experienced paediatric endoscopist, who was not involved in or received any information about the choice of bowel cleansing prior to the colonoscopy. Information about the colonoscopy, food restrictions, and blood tests, was provided in accordance with standard procedures, irrespective of group. Before the laxative solution was given, a capillary blood test was collected. A standard colonoscopy with biopsy was performed under general anaesthesia or deep sedation with propofol, and all the children included in the study were on a glucose drip under anaesthesia. The reason for colonoscopy was the clinical suspicion of inflammatory bowel disease (n=60) or the need to perform a control colonoscopy for previously treated inflammatory bowel disease (n=11). A flow diagram for the participants in this study is shown in Figure 1 Flow diagram.
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The children who were randomised into Group 1 received a weight-adjusted dosage of PEG 3350 with electrolytes: 25-35 ml/kg bodyweight per hour until clear intestinal fluid was obtained, either orally or by nasogastric tube. Administration via nasogastric tube was performed at a rate of 1-1.25 litres PEG per hour, evenly, until the recommended amount had been administered. When (n=2) a nasogastric tube was used, the administration rate was 20-30 ml/minute. The nasogastric tube was used in cases when the children accepted the tube, but only after they were not able to drink a laxative after several attempts. The children who were randomised into Group 2 received cleansing with NaPico at a dosage of one sachet (100 g) of NaPico mixed with water at
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approximately 8 a.m. on the day before the colonoscopy. The second sachet was taken six to eight hours later. The questionnaires (Appendix I) from children who were randomised in Group I (PEG) and Group 2 (NaPico) and their parents, regarding the acceptability and tolerability of the bowel cleansing method used, were collected directly after the bowel cleansing before the colonoscopy. Data collection Interviews (I, II, & IV) Data was retrieved using interviews with children (I, IV) and parents (II).The interviews with children/parents about their experiences prior to the colonoscopy were conducted 3–10 days after the colonoscopy (I, II), and the interviews about lived experiences of IBD 1-3 years after the children had been diagnosed with IBD (IV). In order to examine the experiences of children and parents, interview techniques influenced by Mishler (1991) were used. All interviews began with the interviewer introducing herself, and presenting the study, followed by a general conversation about the child’s school and interests. In this way, the children and their parents were provided with the opportunity to ask questions about what they felt was important. This conversation was also an opportunity for the interviewer to adapt the interview to each individual person, which is an important part of interviewing (Mishler 1991). In the interview situation, the intention was to let the interviewees narrate their experiences as freely as possible. The interviews started with some questions concerning background factors and were of a conversational nature, and follow-up questions such as, “What do you mean?”, “Could you explain?”, and “Could you tell me a bit more about that?”, were frequently asked throughout the interviews in order to give the interviewees the opportunity to elaborate on what had been said (I, II, IV). All interviews were recorded digitally and conducted in 2012 (I), 2013 (II), and 2015 (IV), respectively. The place and time of all 36 interviews (24 with children and 12 with parents) were chosen by the families, and the interviews took place in the family’s home (n=24), in a secluded parlour in the hospital
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(n=11), and in the meeting room at the child’s school (n=1). The interviews with children were performed without parents being present. Bowel cleansing quality The quality of the bowel cleansing (III) was evaluated by direct visualisation during the colonoscopy, using the Ottawa Bowel Preparation Quality Scale (OBPQS). The OBPQS is validated in adults (Rostom & Joliceur 2004) and has been used in children (Worthington et al. 2008; Turner et al. 2009; Di Nardo et al. 2014). The OBPQS guide consisted of three parts. The first part assessed each of the colon segments: the right colon (RC), the mid-colon (MC), and the recto-sigmoid colon (RSC). The second part assessed the volume of residual solution. Finally, the third part assessed the total score (TS), calculated by adding the scores for each colon segment (range 0-4) and the score for the residual solution (range 0-2), with total sums ranging from 0 (perfect) to 14 (completely unprepared colon). The bowel cleansing was considered inadequate if the colonoscopy could not be performed due to an unprepared colon, but all the colonoscopies were possible to perform. Ottawa Bowel Preparation Quality Scale (Rostom & Jolicoeur 2004)
Grade Cleanliness
0 Excellent: Mucosal detail clearly visible. If fluid is present, it is clear. Almost no stool residue.
1 Good: Some turbid fluid or stool residue but mucosal detail still visible. Washing and suctioning not necessary.
2 Fair: Turbid fluid or stool residue obscuring mucosal detail. Mucosal detail becomes visible with suctioning. Washing not necessary.
3 Poor: Presence of stool obscuring mucosal detail and contour. A reasonable view is obtained with washing and suctioning.
4 Inadequate: Solid stool obscuring mucosal detail contour despite aggressive washing and suctioning.
Fluid Small (0) Moderate (1) Large (2)
Total score R: ___+ M: ___ + R-S: ___ + Fluid: ___ = ____/ 14
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Questionnaires Two questionnaires were used to measure acceptability and tolerability (III). The acceptability was based on the child’s experience of the easiness of the laxative intake and the taste of it, in conjunction with the parents’ experience of the child’s reaction. This was measured by two questions influenced by Turner et al. (2009). After the bowel cleansing, but prior to the colonoscopy, all children and their caregivers were asked to respond independently to two questions: “How did the bowel cleansing medicine taste?” and “How easy was it to drink the bowel cleansing medicine?". Parents responded to the questions based on their own understanding of how their child experienced the taste of the medicine and the easiness of drinking it. The following scale was used to grade the ease of the laxative intake: “very easy” (1), “easy” (2), “difficult” (3), and “very difficult” (4). And in order to grade the laxative’s taste, the following scale was used: “very good” (1), “good” (2), “bad” (3), and “very bad” (4). A study-specific questionnaire (n=8 questions) on the tolerability of the bowel cleansing preparation for children, influenced by Bramhagen et al. (2016), was designed for the purposes of this study. The questionnaire was used in the absence of a well-validated tool. It was, however, based on indices successfully used in previous trials of bowel cleansing (Salwen & Basson 2004; Turner et al. 2009). Tolerability was evaluated by the child’s subjective assessment of symptoms during and after bowel cleansing prior to the colonoscopy. The children ranked the tolerability of the laxative using a four-point scale: “not at all,” (1) “a little,” (2) “a lot”(3), and “very much”(4). The questions about the children’s subjective response regarding tolerability were the following: “Have I had a bloated stomach?”, “Have I had faeces?”, “Have I had a stomach ache?”, “Have I felt like vomiting?”, “Have I had a headache?”, “Have I felt worry?”, “Have I had difficulties sleeping?”, and “Have I felt sad?”. DATA ANALYSIS Qualitative method The qualitative content analysis, influenced by Burnard (1996) and Burnard et al. (2008), was used for analysing data (I, II) in order to develop a detailed and systematic overview of the children’s and the parents’ experiences of issues raised in the interviews, and to link them together. Qualitative content
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analysis is a systematic analysis of various forms of human communication, such as interview data (Polit & Beck 2008). The qualitative studies in this thesis (I, II) used an inductive approach, which involves analysing data with little or no predetermined theory, structure, or framework, and using the actual data itself to derive the structure of the analysis. The method of analysis described in these papers involves managing the data ‘by hand’. The interviews were listened to immediately after the collection and transcribed verbatim. All transcripts were read and re-read in order to ensure familiarity with the data, and open coding was conducted in order to provide a summary statement or word for each element that was discussed in the interviews. Words that described the experiences of the children (I) and the parents (II) were abstracted, and the authors, first separately and then together, created codes that were sorted into categories and overall themes after discussions and consensus among the authors. One example of how data was analysed (I, II) is shown in Table 3. Table 3 An example of a final coding framework after reduction of the categories in the initial coding framework Initial coding framework (I) Final coding framework (I)
Information from healthcare staff 1. Preparing yourself
Information from parents/relatives
Information the children sought out themselves
Questions/thoughts
Initial coding framework (II) Final coding framework (II)
Difficulties in assisting the child in taking the
laxative
1. Being forced to force
Could not take the child’s side
Could not show empathy
A phenomenological hermeneutic method (IV), inspired by Lindseth and Norberg (2004), was used to interpret the interviews with children with IBD. The method is based on philosopher Paul Ricoeur’s theory of interpretation (1976). According to Ricoeur (1981), there is an interrelation between phenomenology and hermeneutics, and this method focuses on people’s lived
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experiences in order to achieve an understanding based on the deeper meaning of their experiences. Using this method, the researcher is always alternating between what the text says (its sense) and what it talks about (its reference), that is, between understanding and explanation. For the meaning of individual lived experiences of phenomena, for example, IBD, to be available to others, these experiences need to be narrated and converted into text which can be further interpreted (Lindseth & Norberg 2004). The interpretation of the text involved a hermeneutic circle, where the parts of the text are processed in relation to the whole text, which means a recurrent movement between pre-understanding and new understanding, and the interpretation goes through three phases: first, naive understanding, which is followed by structural analysis, and then, finally, comprehensive understanding (Lindseth & Norberg 2004). Thus, the interviews with the children were transcribed, and a naive understanding, which is a preliminary interpretation of the text, was formulated. The text was read and re-read several times by the authors with an open-minded approach in order to obtain a naive understanding. The open-minded approach means being open enough to allow the text to speak to us, and it is referred to as a “phenomenological attitude” (Lindseth & Norberg 2004). Organising the text into meaning units was the next stage of the process. All the text from the children’s narrations was taken into consideration during the naive reading; however, only the text which related to the lived experience of IBD was used when meaning units were organised and discussed between the authors. The meaning units were condensed and expressed in words that were as close to common expressions in everyday life as possible. The meaning units were further condensed and organised using structural analysis, which means that impressions from the naive reading can be rejected or confirmed. When themes and sub-themes were formulated, both meaning units and sentences were taken into account. The last part of the process was to link the findings of the study to existing literature based on Pörn’s conception of adaptedness (1993), in order to gain a deeper understanding of the meaning of the children’s lived experience of having IBD. Quantitative method For the statistical analysis (III), the software programme SPSS statistics 22.0 (IBM Corp., Chicago, IL., USA) was used. Frequency distribution in number,
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per cent, mean, median, and standard deviation (SD) was performed to describe demography data. Ordinal data should be used when referring to quantities that have a natural ordering (Altman 1991), for example, in this study (III), when using rating scales with a subjective assessment of tolerability and acceptability. A non-parametric Mann-Whitney U test of two independent samples and a Chi-square test were performed in order to compare the bowel cleansing between groups, with regard to tolerability and acceptability. The median was also calculated in order to describe the answers of children and caregivers regarding acceptability. All comparisons were made using two-sided significance levels of p = 0.05. The kappa statistic by Viera and Garrett (2005) was calculated in order to compare the consensus of children and caregivers regarding acceptability. A power analysis for sample size was used to increase the probability of detecting a statistically significant difference between the groups. Small sample sizes run a high risk of gathered data not supporting the hypotheses even when the hypotheses are correct (Altman 1991). The sample size was calculated so that 50 people in each group, a total of 100, could detect a difference in the groups with 80 per cent statistical power and 5 per cent significance level. However, organisational changes resulted in the decision to terminate the study after 71 colonoscopies were performed. A post hoc analysis was performed to describe the actual power. Pre-understanding As the interviewer is a part of the interpretation process, it is important to present and discuss pre-understanding regarding both data collection and data analysis when qualitative research is presented, and the researcher needs to be aware of his/her own pre-understanding in order to be able to comprehend something new (Nyström & Dahlberg 2004). Thus, in order to increase her awareness, the author was interviewed about her own pre-understanding of children with IBD by a colleague before the research process was started. The interview was recorded and regularly listened to during the work on the studies. Bracketing, that is, putting aside the interpreter’s pre-understanding, is difficult to achieve from a Ricoeurian perspective, since the process of reflecting has its starting point in the researcher as a person. The open-minded
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approach is recommended (Lindseth & Norberg 2004), and in order to keep an open-minded approach, and to reduce the risk of only confirming what is already known (Lincoln & Guba 1985), the data was discussed between the authors during the interpretational process. As a paediatric nurse, the author has been working for several years with children who have had GI symptoms, but she has not been involved in work with paediatric colonoscopy or children undergoing treatment for IBD. However, her experience of children who have different chronic illnesses could have influenced the quality of this thesis. On the other hand, the author’s pre-understanding, experiences, and knowledge may have had a positive impact when data was collected. During her earlier work with children and parents in hospital, the author had contact and dialogue with children/parents from different cultures, of different ages, and with different illnesses, and she believes that this pre-understanding had a positive impact on the interview situation.
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ETHICAL CONSIDERATIONS
The children participated in studies I, III and IV, and the parents in studies II and III. The ethical principles of research are the same, regardless of whether the participant is a child or an adult, but they are often more complex in studies involving children. Informed consent is an ongoing agreement by participants in research after they have received an explanation about all potential risks and benefits (Beauchamp & Childress 2013). When children are participants in research studies, they, as well as their parents, should give informed consent. Before written informed consent is acquired from the participants, they need an adequate explanation of the risks and benefits if they participate (Beauchamp & Childress 2013). All participants were given written and oral information about the respective studies, and they had the opportunity to choose the place and the time for the interview after having been given time to reflect. The parents signed the informed consent document before the interview started (II). When children were participants, both the parent (caregiver) and the child signed the informed consent document (I, III, & IV). The information was adjusted so as to be as comprehensible as possible, and a separate mail was sent to children and parents. The information sent to children under the age of 15 was shorter and no medical terms were used. Both the children and their parents were guaranteed confidentiality; no names were included when the interviews were transcribed. Thus, no connection to any person could be made. Questionnaires and protocols in study III were kept safe and only available to the researchers.
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The children with symptoms of IBD often miss social activities because of the nature of their illness, and the interviews could, consequently, have taken time away from other activities, something which could have been perceived as negative. The parents of these children could also have perceived time constraints in connection with the interviews. However, one benefit of the interview studies may have been that the children and parents were given the opportunity to express their experiences, an opportunity that might not otherwise have been available to them. In relation to this, there was a potential risk (in studies I, II, and IV) that unpleasant memories would come up during the interview. In order to reduce this hazard, all children/parents received information about the possibility for contact with a healthcare professional at a later stage, if needed. However, no participant chose to utilise this opportunity. The author had time, before the interview started, to clarify for the child the purpose of the interview, and to describe the role the child was expected to have during the interview. As Kortesluoma et al. (2003) described, the researcher needs to be skilled in understanding the nature of children’s cognitive development and also sensitive to children’s needs. Potential infringements of the children’s privacy were taken into consideration in relation to the interviews, as accounts were obtained of their experiences of an investigation that is considered by many to be unpleasant. Since previous research has shown that children diagnosed with IBD have a need to talk but usually do not talk openly about their abdominal symptoms, they might find it beneficial to share their lived experience with someone who will listen but who is not involved in their care. Children being prepared for colonoscopy with NaPico (III) run the risk of having to repeat the bowel cleansing and the colonoscopy if the bowel was not clean the first time. However, NaPico was already tested in both adults and children and the colonoscopies were performed by an experienced paediatric endoscopist in order to reduce this risk. The balance between risks and benefits plays a role in nearly every medical decision, as well as when participants’ involvement in research is planned. The Regional Review Board in Lund granted ethical approval for the thesis (Ref. No. 2011/155; 2012/186; 2012/464; 2015/ 340).
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FINDINGS
The overall aim of this thesis was to explore the child/child’s perspective of going through a colonoscopy and the child’s perspective of living with IBD. A further aim was to investigate whether sodium picosulfate (NaPico) can be used as an adequate alternative when the bowel is cleansed prior to colonoscopy in children. A summary of the results is presented below. More detailed results of the individual studies can be found in the respective papers (I-IV). Children’s experiences of colonoscopy (I & III) The children’s experiences prior to colonoscopy were identified as belonging to an overall theme, A private affair (I). Outside the hospital, the children did not speak openly about either their abdominal symptoms or the colonoscopy. The children’s experiences prior to colonoscopy were identified as a factor that the children felt was of concern only to themselves. They did not want to talk about the colonoscopy, or the reasons for why they had to undergo it, either. They preferred to speak to their parents, who had been present and involved in the preparatory procedure, and kept their apprehension about certain aspects, such as the diagnosis, to themselves, as they considered this to be something private. Keeping their thoughts to themselves was felt to be a comfort. Some children had spoken to their friends about the colonoscopy, but only in general terms, and they had specifically avoided the term colonoscopy, referring to it merely as an examination.
“It hasn’t been the right type of situation … I feel that I can really talk to my
friends but … it’s a bit like you talk about it over and over again all the time …
explain … and … then you don’t know… how much people will bother to listen
… how much they care … so I tried to talk about it briefly… “(IP 17 study I)
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The children prepared themselves for the colonoscopy in different ways; some wanted detailed information about each of its components, while others felt that it was enough simply to know the exact time it would take place. On the other hand, the children were in need of support from others in order to be able to prepare themselves prior to the colonoscopy. However, some children did not wish to disclose their thoughts and speculations in the presence of their parents or siblings, as they felt that their family needed to be protected from worry:
"And so I thought about my mum, as she had become really sad the first
time she came with me."(IP 13 study I)
They were reluctant to undergo a colonoscopy. Most children reported experiencing various emotions over the course of the process, such as frustration, sadness, anger, fear, anxiety, and stress, and they did not wish to reveal these emotions to anyone. The emotions were linked to the difficulty of taking the laxatives. The laxative solution, which was used to clean the children’s bowels, was described as tasting “disgusting”, “bad”, “awful”, “salty”’, and/or “like oil”. Difficulties of ingesting large quantities of bad-tasting fluid encouraged them to develop strategies to continue drinking. Thus, the children tried to find methods to ease their passage through the process, for example, they tried not to think about the procedure, or to find ways to facilitate ingesting the laxative. Others did as they were told without objecting or attempting to get themselves out of the situation, because they believed that this was what was expected of them.
"I felt that everyone surrounding me expected me not to complain ... I just
felt it ... so I didn’t do that ... but the doctor said that I had to do that and I
did it." (IP 3 study I)
Some children felt that the information about the procedure was not sufficient, but they did not feel comfortable about asking the healthcare staff questions; they said that they preferred to ask their parents, as this was perceived as easier. When using PEG, a number of children admitted to not being convinced of the necessity for the prescribed quantity of fluid for bowel cleansing, as they had
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not eaten anything for two days. Some children reported that they had "cheated" with the laxative. They had their own individual explanations for why they considered that the cleanliness of the colon would not be affected by “a little cheating”. The cheating with the laxative was not disclosed to either the parents or the healthcare staff.
"I cheated a little ... didn’t drink it ... always left a bit ... held my nose ...
then you don’t taste it ...” (IP 15 study I)
The children’s experiences prior to colonoscopy were often related to the difficulties of the intake of a large volume of polyethylene glycol (PEG) over a short duration (I). The difficulties with the intake of PEG were also confirmed when the children responded to questions (acceptability) in self-reporting about the intake and taste of two bowel cleansing medicines, PEG or NaPico (III). Nearly 90 per cent of the children (30/34) responded that it was very difficult or difficult to drink PEG (md=Very difficult). No children responded that PEG tasted good or very good, and there was a statistically significant difference between the groups (p= 0.001) in terms of the taste and easiness of the intake of the laxative (Table 4).
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46
Tabl
e 4
Res
ults
from
chi
ldre
n’s a
nd p
aren
ts’r
espo
nses
rega
rdin
g ac
cept
abili
tyC
hild
ren
n=70
Pare
nts n
=69
Ver
y go
odn
(%)
Goo
d
n (%
)
Bad
n (%
)
Ver
y ba
dn
(%)
Med
ian
pV
ery
good
n (%
)
Goo
d
n (%
)
Bad
n (%
)
Ver
y ba
dn
(%)
Med
ian
p
How
did
the
bow
elbo
wel
clea
nsin
g m
edic
ine
tast
e?
0.00
10.
001
PEG
n=
35/3
40(
0.0)
0(0.
0)8(
22.9
)27
(77.
1)Ve
ry
bad
0(0.
0)0(
0.0)
9(26
.5)
25(7
3.5)
Very
ba
dSo
dium
pi
cosu
lpha
ten=
35/3
5
3(8.
6)25
(71.
4)7(
20.0
)0(
0.0)
Very
go
od2(
5.7)
25(7
1.4)
7(20
.0)
1(2.
9)G
ood
Chi
ldre
n n=
71Pa
rent
s n=6
9V
ery
easy
Easy
Diff
icul
tV
ery
diff
icul
tM
edia
nP
Ver
y ea
syEa
syD
iffic
ult
Ver
y di
ffic
ult
Med
ian
P
How
eas
y w
as
to d
rink
the
bow
el c
lean
sing
m
edic
ine?
0.00
10.
001
PEG
n=3
5/34
1(2.
9)4(
11.4
)10
(28.
6)20
(57.
1)Ve
ry
diffi
cult
1(2.
9)4(
11.8
)7(
20.6
)22
(64.
7)Ve
ry
diffi
cult
Sodi
um
pico
sulp
hat
n=36
/35
20(5
5.6)
14(3
8.9)
1(2.
8)1(
2.8)
Very
ea
sy19
(54.
3)14
(40.
0)1(
2.9)
1(2.
9)Ea
sy
P= v
alue
be
twee
n gr
oups
47
The children also tolerated NaPico significantly better than PEG (p= 0.001). Those who used NaPico were less worried (not at all/a little, n=31/36), less sad (not at all/a little, n=34/36), and felt less nausea (not at all/a little, n=32/36) compared to those in the PEG group (Table 5). The parents perceived NaPico as tasting better and that it was significantly easier for the child to drink than PEG. Both the children and the parents responded similarly, indicating that PEG was difficult to drink for the children, and these responses showed a moderate agreement (Kappa=0.41-0.61) (III).
47
48
48
Tabl
e 5
Res
ults
fro
m c
hild
rens
’sub
ject
ive
resp
onse
sreg
ardi
ng to
lera
bilit
yof
bow
el c
lean
sing
med
icin
e be
fore
col
onos
copy
PEG
n=35
NaP
ico
n=36
pN
ot a
t all
n (%
)A
little
n (%
)M
uch
n (%
)V
ery
muc
hn(
%)
Not
at a
lln
(%)
Alit
tlen
(%)
Muc
hn
(%)
Ver
y m
uch
n(%
)
Hav
e I
had
a bl
oate
d st
omac
hn=
689
(25.
7)12
(34.
3)9
(25.
7)5
(14.
3)16
(48.
5)12
(36.
4)3
(9.1
)5
(14.
3)0.
017
Hav
e I h
ad fa
eces
n=71
0(0
.0)
3 (8
.6)
8 (2
2.9)
24 (6
8.6)
0 (0
.0)
6 (1
6.7)
15 (4
1.7)
15 (4
1.7)
0.02
8
Hav
e Ih
ad a
stom
ach
ache
n= 7
14
(11.
4)16
(45.
7)12
(34.
3)3
(8.6
)6(
16.7
)19
(52.
8)9
(25.
0)2
(5.6
)0.
267
Hav
e I f
elt l
ike
vom
iting
n=71
3(8
.6)
21(6
0.0)
6(1
7.1)
5(14
.3)
20(5
5.6)
12(3
3.3)
2(5
.6)
2(5
.6)
0.00
1
Hav
e Ih
ad a
hea
dach
en=
7123
(65.
7)11
(31.
4)0
(0.0
)1(
2.9)
30(8
3.3)
3( 8
.3)
2(5
.6)
1(2.
9)0
142
Hav
e I f
elt w
orry
n=70
11(3
1.4)
15(4
2.9)
5(1
4.3)
4(1
1.4)
20(5
7.1)
11(3
1.4)
3 (8
.6)
1(2.
9)0
022
Hav
e I
had
diff
icul
ty s
leep
ing
n=69
16(4
5.7)
16(4
5.7)
1(2.
9)2
(5.7
)21
(61.
8)10
(29.
4)2(
5.9)
1(2.
9)0
235
Hav
e I f
elt s
adn=
7114
(40.
0)13
(37.
1)6
(17.
1)2(
5.7)
26(7
2.2)
8(2
2.2)
1(2.
8)1(
2.8)
0 00
5
PEG
= po
lyet
hyle
negl
ycol
; NaP
ico
= so
dium
pic
osul
phat
ep=
valu
e be
twee
n gr
oups
49
The parents’ experiences when their child undergoes a colonoscopy (II & III) The parents viewed colonoscopy as something positive and important, because the investigation could lead to knowledge of the causes of their child’s problem (II). The parents’ experiences of their child’s colonoscopy were that it entailed a constant inner battle between feelings of hope and feelings of despair. They hoped that nothing serious would be detected, although that possibility existed and was constantly present. However, they also felt despair, as there were too many unanswered questions about the child’s condition, resulting in a feeling of being pressured. Initially, the children showed no reluctance to undergo their colonoscopies, which was a relief for their parents. However, this attitude changed as soon as the children started drinking the laxative. On the other hand, the parents understood the necessity of drinking the laxative, and they felt that they were responsible for the bowel preparation and that they could not support their child’s perspective. The parents emphasised that although the situation forced them to put the child’s feelings aside and forced the child to proceed with the bowel preparation, this was necessary for the colonoscopy to be performed.
“I felt really mean ... I felt like that ... I don’t know, it was probably like
seeing a photo of a parent who forces their child to drink poison and you
know that it’s poisonous. I knew that it wasn’t poisonous, but it still didn’t
make her feel good from it at that time and forcing her to drink it was very
difficult ... and at the same time you have to try.” (IP 9 study II)
When parents were interviewed in study II, they also described that a large volume of laxative resulted in them often having conflicts with the child instead of supporting him/her during the colonoscopy. They needed to hide their own feelings to be able to force their children to undergo the bowel cleansing contrary to the children’s wishes.
“... it felt like total child abuse ... seeing him sitting with tears running and
drinking this salt water and refilling with ... it was awful ... I tried to be
there and be supportive and not, like, show myself, and encouraged him, it’s
going well, you’re strong, like ... no, I probably wouldn’t have done it one
more time ... so I wouldn’t have subjected him to it one more time, I
wouldn’t ...” (IP 11 study II)
49
50
The parents trusted the healthcare staff and expected to receive help from them during the child’s hospitalisation, but instead they felt compelled to take on a role equivalent to that of the healthcare staff. Whereas the parents stayed by the child’s bedside during the entire hospitalisation, the healthcare staff only stayed with the child for a short time to help the parents convince the child to drink the laxative. The parents expressed that it was important to be able to feel like a parent and to be with and support their children. However, they experienced that it was impossible to be a supportive parent during the bowel preparation prior to the colonoscopy. Instead, their role as a parent was transformed into being a parent who was unable to help his/her child. Being admitted to the hospital for the bowel cleansing was therefore considered to be safe by the parents:
“I thought it was brilliant that I didn’t have to give her an enema at home
and that we were at the hospital. When you don’t have a medical back-
ground yourself, you feel safe because you’re around those who are compe-
tent ...” (IP 6 study II)
The importance of clear information provided by the healthcare staff was emphasised, because of experiences that information was not always accurate in terms of what would happen next or when. The lack of clear information led to feelings of anxiety, as the parents felt that their children expected answers to their questions, answers which they were not confident in providing. Difficulties intensified due to their unfamiliarity with the routines and the environment at the hospital. This factor resulted in parents feeling that they did not receive the guidance they had expected, which in turn negatively affected the hospital stay experience (II). Bowel cleansing quality with PEG or NaPico (III) The characteristics of the children in the two groups are presented in Table 2, which shows that the groups were comparable. The mean ages of the children were 15.3 (SD=1.9) and 14.6 (SD=2.4) years, in the PEG and NaPico groups, respectively. In total, 71 children (35 girls, 36 boys) completed the bowel cleansing; 12 children declined before randomisation, and one child declined after the envelopes were opened. However, it was only possible to evaluate the bowel cleansing quality among a total of 67 children, since some protocols
50
51
were missing (n=4) after the colonoscopy (PEG, n=1; NaPico, n=3). No children had abnormal salt values before bowel cleansing, and all children were checked for approximately two hours at the recovery ward; no dehydration or other deviating status was reported. The adverse effects reported by children in both groups included vomiting, a bloated stomach, and stomach ache. The Mann-Whitney test showed no significant difference between the two groups regarding cleansing of the right colon or the recto-sigmoid colon, residual solution, or total score. The cleansing of the mid colon was significantly higher in Group 1 (excellent, n=12; good, n=16) than in Group 2 (excellent, n=12; good, n=16) (p=0.040). This result is presented in Table 6.
51
52
52
Tabl
e 6
Bow
el c
lean
sing
acc
ordi
ngO
ttaw
a Sc
ale
PEG
n=
34N
aPic
o n
= 33
Exce
llent
Goo
dFa
irPo
orEx
celle
ntG
ood
Fair
Poor
pR
ight
Col
on(R
C)
11(3
2.4)
11(3
2.4)
10(2
9.4)
2(5.
9)4(
12.1
)12
(36.
4)13
(39.
4)4(
12.1
)0.
062
Mid
Col
on(M
C)
12(3
5.3)
16(4
7.1)
5(14
.7)
1(2.
9)7(
21.2
)12
(36.
4)12
(36.
4)2(
6.1)
0.04
0R
ecto
-sig
moi
d (R
S)6(
17.6
)15
(44.
1)10
(29.
4)3(
8.8)
6(17
.6)
10(3
0.3)
13(3
9.4)
4(12
.1)
0.42
8
Tota
l sco
re(T
S)PE
Gn=
34N
aPic
on=
330.
096
01(
2.9)
2(6.
1)1
6(17
.6)
3(9.
1)2
6(17
.6)
0(0.
0)3
4(11
.8)
6(18
.2)
47(
20.6
)7(
21.2
)5
1(2.
9)4(
12.1
)6
5(14
.7)
1(3.
0)7
2(5.
9)5(
15.2
)8
1(2.
9)2(
6.1)
90(
0.0)
1(3.
0)10
1(2.
9)1(
3.0)
110(
0.0)
1(3.
0)12
-14
0(0.
0)0(
0.0)
53
The meaning of the children’s lived experience of IBD (IV) The meaning of the children’s lived experience of IBD was interpreted as a main theme: A daily struggle to adapt and to be perceived as normal (IV), which was linked to existing literature based on Pörn’s theory of adaptedness (1993), in order to gain a deeper understanding of the meaning of the children’s experience of IBD. Pörn explains adaptedness as a balance (equilibrium) between the repertoire (ability) of the individual, including her health and competence, her goals (desire, wishes), and the environment. Adaptedness is an optimal or good state to be in, since being in balance allows the individual to achieve all her goals in the present (or expected) environment. This balance may be disturbed (creating a disequilibrium) in three ways. The ability may falter, the goals may become more ambitious and therefore harder to achieve, or the environment may become more challenging. There are also three ways in which the person can find a new balance, namely, by increasing her abilities (if possible), changing her goals, or changing the environment (Pörn 1993). At the time of the interview, all of the children had been living with their diagnosis for more than one year. Despite symptoms of IBD (e.g., pain, triggers, bloating), the children viewed themselves as healthy or normal. However they mentioned that the symptoms prevented them from leading “normal” lives, reducing the extent of opportunities granted to them every day. In order to convince themselves that they were not different from their peers, they linked the IBD exclusively to the intestine and not to themselves as individuals. The children described how they suffered concentration problems and battled with their thoughts and feelings of being different from their peers. They tried to cope with their tasks as well as possible, but expressed that this caused quite a lot of stress. It was important to them to try to cope with problems independently, since this gave them a sense that they were like their peers. However, when the symptoms recurred and the side effects of the medicine were obvious, their opportunities to socialise with friends were affected, much as they strove to fulfil the wish to be normal. The children expressed that they always needed to know where the toilets were and that they only felt safe at home, where they could quietly satisfy
53
54
their need to defecate. Regardless of whether the symptoms were apparent (when the disease was back), or whether they were mild, the children always felt the need to have control of their surroundings because of a fear that the need to defecate could arise suddenly:
“If we’re going somewhere, to a bar, for example ... or taking the train ... I
always think whether there is paper ... I always take that with me … I al-
ways have a runny nose and it helps that people don’t ask ... but that’s what
people have reacted to … if I’m going to the toilet then I take paper with me
and I know what I’m doing, I’ve done it so many times ... the others never
use the train toilet unless it’s an emergency ... in the school, I know that
there’s a toilet as well ... sometimes I’ve had the need to go just when the
lesson has started ... everyone is watching ... I often come late to the lessons
... I can’t control myself until the … uhh.” (IP 6 study IV)
During the time when they had no symptoms, the children experienced that everything was “normal” and they felt healthy. They felt that they were like everyone else and did not think about the disease too much. When they described “the normal state”, they referred to the feeling that the disease was not present during periods when the symptoms were minimal. The children also expressed that their parents played an important role in their everyday lives. The parents were generally recognised as being well-informed, demonstrating an interest in their child’s health and well-being as well as an understanding of their child’s struggles. It was the parents who assisted the children and reminded them to take their medication or food. However, for the children, their parents’ constant remarks regarding abdominal pain, and intake of food and medication, were just another indication of their chronic illness, which the children wished to disregard in order to endure their everyday life. In light of Pörn’s theory, our interpretation of the findings from the children’s narratives was that the illness reduced their abilities to achieve their goals in daily life. The children, despite symptoms of IBD, were not prepared to be diagnosed with a chronic illness requiring lifelong treatment. They were not mentally prepared for all the limitations in daily life that the illness would entail, due to its unpredictability, and they experienced that they were forced to accept the illness and the limitations caused by the illness. Thus, adapting to the new situation was presented as a daily struggle for the children.
54
55
METHODOLOGICAL DISCUSSION
In this thesis, different designs were used to explore the child/child’s perspective of going through a colonoscopy (I, II, III), and the child’s perspective of living with IBD (IV). A further aim was to investigate whether sodium picosulphate (NaPico) can be used as an adequate alternative when the bowel is cleansed prior to colonoscopy in children (III). Qualitative methods, with data collected through interviews, make it possible to describe the qualitative human world (Kvale & Brinkmann 2009), for example, the world of children. The advantage of the qualitative interviews was that they allowed investigation of, for example, the children’s situation from both the children’s and the parents’ perspectives. The UN Convention of the Rights of the Child (1989), which sets out children’s rights, is based on the underlying concept of the child as an autonomous individual. During the planning stage of this thesis, it was born in mind by the author that research with children might differ from research with adults, mostly in that it is difficult for an adult researcher to understand the world as perceived by a child, as described by Nilsson et al. (2015). However, despite the challenges involved in taking the child’s perspective it must never be forgotten that only the children themselves can best describe their world (Clarke 2015). Regardless of the difficulties of interpreting data, or performing an analysis, only from the child’s perspective, the children were given an opportunity to express their own feelings and experiences through the interviews, which is important in order to improve paediatric care (I, IV). No single method adequately solves the problem of rival explanations, since each method reveals different aspects of the data (Patton 2002). Thus, the results from the study with children’s experiences prior to colonoscopy (I) can
55
56
supplement results from the study with parents (II) and the RCT study (III), based on the children’s and the parents’ subjective assessments and the clinical findings. Participants A qualitative design was chosen in studies I, II, and IV. The number of participants in these interview studies varied (17 (I), 12 (II), & 7 (IV)), and, according to Patton (2002), there are no rules for sample size in qualitative studies; in-depth information from a small number of informants can be valuable, especially if the information is rich. Further, the recommended sample size for phenomenological studies ranges between 6 (Denzin & Lincoln 1994), 6–8 (Kuzel 1999), and 6–10 (Morse 2000) interviews, and bearing this in mind study IV could be said to have an optimal number of participants. The phenomenological hermeneutic method was used when data was analysed in this study, which can be an appropriate method for a small number of interviews, according to Lindseth and Norberg (2004). It was expected that several children would like to be included in study IV, because it had been shown previously (I) that children with IBD need to talk about their situation and that they are willing to share their experiences when they are given the opportunity to do so. A total of 22 children were invited to participate, but 15 of them declined (IV). The reasons for this were not explored further but may be linked to the children’s already tough situation due to their illness. That the study design can influence willingness to participate both negatively and positively has been shown in adults with IBD (Ravikoff et al. 2012), and according to Ravikoff et al. a majority of adult patients with IBD who had previously participated in research were not interested in participating in future studies (ibid.). Bearing in mind results from studies with adults, it may be either the study design or the fact that the children were already participants in study III that influenced the children’s willingness to participate or not. The sample size in study III was calculated to detect a difference in bowel cleansing quality in the groups according to OBQRS, with 80 per cent statistical power and 5 per cent significance level. The post hoc power analysis using the obtained data provided a power of 36.3 per cent for detecting a significant difference between the two treatment groups when considering a
56
57
Mann-Whitney U test of two independent samples. Thus, with a type I error of 0.05, we would have a type II error of 63.7 per cent. Because of the small sample size, however, it is difficult to conclude that the overall bowel cleansing quality between groups was equivalent in the present study. Organisational changes after 71 colonoscopies resulted in subsequent colonoscopies being performed by additional endoscopists, who did not have prior experience of paediatric colonoscopies. As a result, the research group decided to terminate the study after 71 colonoscopies were performed. The aim of the decision to discontinue the study was to minimise the risk of having to repeat colonoscopies among the children. At the same time, the result from the questionnaires showed statistically significant differences between the groups, despite the low number of participants, and this result conformed to the result of other studies (Turunen et al. 2009; Di Nardo et al. 2014). According to the power analyses, an important limitation of the present study was the small sample size available for assessments of bowel cleansing quality. However, all the colonoscopies were successfully performed. Taking these aspects into consideration, it seems reasonable to assume that the findings from study III have a clinical value in spite of the small sample size. Interviews Being interviewed is an important event in a child’s life, and interviews should therefore be well prepared and individually adapted (Korteslouma et al. 2003). Researchers need to be reflective throughout the research process and to be critically aware of the range of reasons why research with children may be potentially different from research with adults. Perceiving children as competent social actors does not necessarily mean that the research should be conducted in the same way as with adults (ibid.). The interviews with the children (I, IV) varied in length, which could perhaps have been influenced by the subjects’ varying age, but no relations between age and interview length could be identified in this data; rather, the child’s way of expressing his/her experience was the determining factor for the length of each interview. Furthermore, no relation was found between the child’s age and the description of his/her experiences. The time for the interviews in study IV varied between 1 and 3 years after the diagnosis and that might have impacted the children’s narratives.
57
58
When study II was planned, our intention was to interview parents of both genders, but only one man participated in the study. This result was mainly due to mothers being present throughout their children’s in-hospital stays, whereas fathers were more often present only during some stages of their children’s preparations. This factor may have influenced the results, because other studies indicate that mothers may show more concern regarding various medical procedures, such as day surgery (Andersson et al. 2012). Trustworthiness According to Lincoln and Guba (1985), there are four criteria in establishing trustworthiness in qualitative studies. These criteria are credibility, transferability, dependability, and conformability. Credibility refers to the confidence in the truth of the data and in the analysis process (ibid.). Interviews were conducted with children and parents who had experience of the procedures prior to colonoscopy, and with children about their lived experience of IBD. To increase the credibility of the study, all children/parents were interviewed by the same interviewer, who is a paediatric nurse with extensive experience of conversing with children and parents. The interviewer’s intention was to attain an understanding of the children’s/parents’ accounts and to guide them towards talking about their experiences. Dependability and conformability are demonstrated by detailed descriptions of all phases of the analysis process (I, II, IV). Various steps during the analysis process were discussed between the authors, and each stage of the research process was described in detail. This procedure was adopted in order to show that the findings were based on the data and not on the subjective stance of the researcher. When a research question is planned, it is important to keep in mind the possibility of transferability of the findings to other settings or groups. Interviews were only conducted with Swedish-speaking children/parents and this may influence the transferability to other groups. However, the intention was to apply the results to other groups, as the participants varied in terms of age, gender, and origin.
58
59
Reliability and validity The reliability of an instrument refers to the consistency with which an instrument measures what it is supposed to measure (Polit & Beck 2013). The reliability of the OBPQS, which was the scale used in study III, has been tested by Rostom and Jolicoeur (2004). It was validated prospectively and demonstrated high interobserver agreement and reliability, whether used as a total score or for individual colon segments. The OBPQS is a simple, objectively framed bowel preparation quality scale that assesses colonic segments individually and colonic fluid overall, and provides a summary score for the entire colon (Rostom & Jolicoeur 2004). Validity is the degree to which an instrument measures what it is supposed to measure (Polit & Beck 2013). The OBPQS has been validated in adults and used among children (Turner et al. 2009; Di Nardo et al. 2014). There are several different, validated scales which can be used to measure bowel cleansing in children: the Boston, Aronchick, Harefield, and Ottawa scales. The Ottawa scale was used in study III to record cleansing in each segment of the bowel, a selection that could be seen as a limitation since this scale was validated in 97 colonoscopies in adults only (Rostom & Jolicoeur 2004). However, there is currently insufficient evidence to recommend one scale over another, given the widely varied number of colonoscopies during validation (Mathus-Vliegen et al. 2013). When self-reports are used, the researcher must decide which type of self-report interviews or questionnaires should be used, because the design may affect the findings and the quality of the evidence (Polit & Beck 20013). In order to get answers to various questions about the taste, the easiness of intake, and the side effects of laxatives, two questionnaires were used. The questions about the taste and intake of laxatives were used previously in similar studies in children (Turner et al. 2009) and that was the reason for using them in study III. The questionnaire about side effects was made for the present study, based on the recording of the occurrence and severity of GI symptoms in children. Since the bias was minimal, the questions can be regarded as having an appropriate reading level.
59
60
GENERAL DISCUSSION OF FINDINGS
The overall aim of this thesis was to explore the child’s perspective of going through a colonoscopy and the child’s perspective of living with IBD. A further aim was to investigate whether sodium picosulphate (NaPico) can be used as an adequate alternative when the bowel is cleansed prior to colonoscopy in children. The detailed findings are reported in papers I-IV, and this discussion presents the overall findings. By studying the child’s perspective of going through a colonoscopy (I-III) and of living with IBD (IV), it has been possible to shed light on different aspects of the child’s needs, thoughts, and feelings around the colonoscopy, as well as his/her reflections about living with IBD. The results of the studies showed that children felt that going through a colonoscopy was something they wanted to keep to themselves as ‘a private affair’ (I) and that they were determined not to speak openly about their gastrointestinal problems in daily life (I, IV). They wanted privacy, but at the same time they were open to sharing their thoughts for the benefit of this study. All in all, regardless of the children’s unwillingness to talk about their thoughts and reflections linked to IBD, the healthcare professionals can meet various challenges when they plan the care. The children and their parents (I, II) describe healthcare professionals by using positive adjectives such as “nice” and “kind”, which is also seen in other studies, when the children are in-patients (Coyne & Kirwan 2012), or when they describe a radiographer after a radiographic examination (Björkman et al. 2012). However, experiences of kind healthcare staff were not sufficient to help the children experience the preparing process, in particular, as less negative. Both the children and the parents experienced a lack of knowledge
60
61
about the colonoscopy despite written and verbal information about all the details before and during colonoscopy (I, II). That may indicate that this protocol is not sufficient. Therefore, the children and their parents need further guidance from healthcare staff so that parents do not feel too great a responsibility for the child’s preparation for colonoscopy. Our result showed that the children preferred to ask their parents about the colonoscopy, as they did not feel comfortable about asking the healthcare professional (I). Additionally, the children recounted that the presence of their parents enabled them to relax and helped them to divert their thoughts from the colonoscopy, and that the parents supported them through the particularly difficult aspects of the process, such as ingesting the laxative (I). Therefore, if the parents are comfortable with the procedure, they will feel more confident and they may be able to support their children in a better way. The present results, namely, that the children rarely express what they think about a colonoscopy or about their symptoms, can be explained in different ways. IBD is a chronic illness with symptoms whose nature children can experience as embarrassing and humiliating (Engström 1999; Reigada et al. 2011), and children as well as young adults (Sanders 2014) may experience a stigma when the facts about the illness and what it entails are revealed. Further, the children in this thesis are in the middle of adolescence. During this relatively short period, both a physical and a mental development take place. The children can think in abstract ways, and they are interested in themselves in a new and more self-critical way. They are also more interested in connections with their peers and in being independent (Christie & Viner 2005). This, in combination with symptoms from an illness such as IBD, can make heavy demands on a child. Although it is not revolutionary, it is an important result of the studies presented in this thesis that children aged between 10 and 18 years are not willing to share their deeper thoughts about their daily life with symptoms or colonoscopies, either with their peers or with their parents or the healthcare professionals. Therefore, the healthcare staff actively need to ask about the children’s wishes as well as their parents’ desires when they plan a colonoscopy or follow up the medical treatment. The chronic and embarrassing nature of their symptoms, with persistent toilet needs, stomach pain, and the perception that no one without similar experiences will understand them, as well the constant struggle to be perceived as their peers, are only a small part of the issues that these children have.
61
62
It was noted that some children were afraid of negative reactions from friends and therefore chose not to disclose much about their situation. This is in consensus with Berntsson et al. (2007) and Nicholas et al. (2007), who showed that some children with chronic diseases, for example, IBD, choose not to disclose anything about their disease to their friends in order to maintain their integrity, and because they are exposed to great challenges in their lives by attempting to be like other children. However, for the purpose of these studies, all participating children were eager to speak about their experiences. The children wanted privacy but at the same time they were open to share their thoughts for the benefit of the study. This might indicate their need to talk about what they experienced. The focus of this thesis was placed on capturing the child’s perspective, which is an important perspective, bearing in mind the UN Convention on the Rights of the Child (1989) that sets out children’s rights, based on the underlying concept of the child as an autonomous individual. Some children from these studies (I, IV) told the first author about the feeling of relief they had after they had narrated their experiences when they were interviewed. This can be linked to the opportunity to reflect before making the decision to participate in the study, something which may also be used as a basis when the healthcare professionals help the child to prepare psychologically before an unpleasant procedure. Colonoscopy in children requires effective bowel cleansing for both diagnostic and therapeutic purposes. The safety of the procedure is directly affected by the quality of the bowel preparation. The fact that the children interviewed in this thesis experienced colonoscopy as a difficult and unpleasant procedure can partly be due to bowel cleansing with large volumes of the bad-testing laxative PEG, according to the participating children and their accompanying parents (I, II, III). The efficacy of PEG, and the safety profile, are the primary reasons this was chosen as the recommended laxative (Mathus-Vliegen et al. 2013; Pal et al. 2014). Difficulties with PEG in children has been shown previously (Turner et al. 2009; Di Nardo et al. 2014), but it is still the most used laxative. This may be explained by the focus often being placed on the quality of bowel cleansing as the most important part of the preparation prior to colonoscopy and not on children’s experiences of ingesting the laxative.
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The result from study III shows that all colonoscopies (n=71), whether using NaPico or PEG, provided effective bowel cleansing, and all colonoscopies could be completed successfully. This result can be linked to the fact that the same experienced paediatric gastroenterologist performed all colonoscopies, and this fact can also be viewed as a major strength of our assessment of bowel cleansings using the OBPQS, because it minimised interobserver variability. Furthermore, the result shows that in the NaPico group no bowel portion was cleansed to an inappropriate level in terms of the OBPQS. However, because of the small sample size it is difficult to conclude whether the overall bowel cleansing quality was different between groups. NaPico met the requirements for cleansing quality as well as acceptability and tolerability in children (10-18), which is in accordance with other studies (Turner et al. 2009; Di Nardo et al. 2014). The present result was expected, because NaPico requires significantly lower quantities of laxatives than PEG. Our findings, thus, support that NaPico should be offered to children when preparing them for a colonoscopy. When PEG is used, an inpatient admission is often required for nasogastric tube administration, if the child is not capable of taking in a large volume of laxative. Indeed, offering more options to children can be an important factor influencing their willingness to follow the recommendations for bowel cleansing before colonoscopy. When using NaPico, the child does not need to stay in hospital, but instead the bowel can be prepared at home, an opportunity which will be appreciated by many children and parents. This opportunity can also contribute to reducing the cost of the preparation. Further, the results from this thesis show that the children with symptoms of IBD need support from their parents and healthcare professionals when they must undergo a colonoscopy (I, II), as well as in daily life (IV). However, the parents felt uncomfortable in the role that was unexpectedly assigned to them while their child stayed in hospital, since colonoscopy is an investigation that causes discomfort to the child. The parents felt responsible for their children’s emotional well-being and for the bowel cleansing procedure prior to colonoscopy. Previous research has shown similar feelings in parents, that is, how they are willing to provide basic childcare but are reluctant to perform nursing care if it will cause their children discomfort (e.g., Coyne et al. 2006; Power & Franck 2008; Stuart & Melling 2014).
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The results from the present study (II) also show that the parents often did not feel comfortable about asking for help or guidance during the colonoscopy procedure, particularly not if they thought that the healthcare staff expected them to be able to manage the situation. In cases where the parents felt confident with their knowledge about the colonoscopy and the bowel cleansing, the children felt less stressed (I). Previous research with healthcare staff has shown that they believe that they are extremely sensitive to the needs of the child and his/her parents when preparing the child for the procedure (Lloyd et al. 2008). It constitutes an interesting contrast to other studies, which report that parents feel a lack of individual preparation for paediatric care (Chorney & Kain 2010; Andersson et al. 2012; Bray et al. 2012; Ford et al. 2012). This factor is crucial, considering the parents’ role and importance for the child, especially when the child has the symptoms of a chronic illness and is dependent on the parents’ help in many situations, for example, in connection with a colonoscopy (I), or when the child needs daily help with, for example, medicine or food intake (III). Therefore, the results from this thesis may contribute to continued efforts to make it possible to meet the requirements which are the recommended practice for paediatric colonoscopy according to ESPGHAN (2005). The children with IBD (IV) viewed themselves as healthy or normal, and they began their narrations by expressing that they felt good. The meaning of the children’s lived experience of IBD in study IV was presented as a theme: A daily struggle to adapt and to be perceived as normal. They were diagnosed with UC and their narrations of their experiences showed that they were capable of adapting to daily activities that they thought were important in order to feel healthy, but they also showed that they needed support. It is not surprising that they experienced difficulties in comparison to their peers because of the many limitations of their life and the challenges they had to deal with. The result from study IV shows that children with IBD try to adapt in order to make their everyday life as normal as the life they perceive that their peers have. This is especially important for these children due to the natural development which takes place in their age group. According to the children participating in a study by Kostmann & Nilsson (2012), aiming to investigate children’s perspectives on health, relations are the single most important factor
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for their well-being. Relations are in fact almost as important to the children’s well-being as basic needs such as eating, drinking, and exercising (ibid.). This is interesting to reflect on in relation to children with symptoms of IBD. The children in our studies had GI symptoms, which means stomach pain, triggers, and a bloated stomach, symptoms which had a negative impact on food intake or on different activities in their daily life, and which could, furthermore, have a negative impact on relations with their peers. Involving children as participants in different studies might open up for a perspective that is closer to the children’s real needs, thoughts, and reflections, especially when they need to undergo an unpleasant medical procedure, such as colonoscopy, or are living with a chronic illness, such as IBD.
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CONCLUSION
This thesis showed that both the child and the child’s perspective of going through a colonoscopy are important in order to improve paediatric health care. The children with symptoms of IBD felt that the colonoscopy, and the symptoms they had, were something they wanted to keep to themselves. To enable the children to cope with the preparation for a colonoscopy while maintaining their personal integrity, support was needed from both their parents and the healthcare professionals. Furthermore, the children appreciated being given an active role in the preparatory steps and an opportunity to choose between different options, if available. Parents need clear and specific guidance about what is expected of them, as well as the opportunity to receive training, in order to feel secure with the procedure. Sodium picosulphate was more tolerable to children aged 10 to 18 years than polyethylene glycol; both the children and their accompanying parents were more accepting of sodium picosulphate than polyethylene glycol. The present result may contribute to new recommendations regarding bowel cleansing for children before colonoscopy. The interpretation put forward in this thesis is that one meaning that can be extracted from children’s experience of IBD is that they are struggling to adapt and to be perceived as normal. This is a conscious process entailing a confrontation with various problems, such as ambitions and goals that are hard to achieve due to reduced abilities resulting from illness or an insufficiently adapted environment.
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CLINICAL IMPLICATIONS
The children’s experiences of going through a colonoscopy and living with IBD indicate that healthcare staff need to take certain measures aimed at identifying and individualising the children’s needs, in order to provide optimal help to children with symptoms of, or diagnosed with, IBD. Since children with symptoms of IBD have varying requirements and may not like to share their thoughts and needs prior to colonoscopy, the result suggests that supportive parents who get individual guidance during the procedure can help and support their children and thus minimise the negative experiences of the procedure. Children’s experiences prior to colonoscopy are a private affair, and the children need an individually adapted preparation to comprehend the ‘preprocedural’ preparation. Increased knowledge of children’s experiences prior to colonoscopy can improve the chances of healthcare staff carrying out the colonoscopy in a way that children experience as less distressing. The results indicate that the healthcare staff need time to establish a relationship with the family before the child is admitted to the hospital. Our suggestion is that the child and his/her parents meet the healthcare professional that will be present during the child’s preparation at an information meeting a few days before the planned examination, in order to establish contact and provide opportunities for both questions and discussion regarding the parents’ role when their children undergo a colonoscopy. An important step in this context is to ask what the children know about colonoscopy and help them prepare fully for the procedure. A dialogue between child, parents, and healthcare staff about their mutual roles is preferable, in order to reduce both the children’s and the parents’ anxiety and
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uncertainty. Such a dialogue is considered to be important because it emerged that the children turned to their parents for both advice and answers to their questions, and the parents felt that it was easier to manage the child’s preparation when healthcare staff were present at the bedside. The present result further demonstrates that NaPico should be offered as an equivalent laxative option, especially for children who need to undergo several colonoscopies. Where possible, healthcare staff will need to adapt the existing standard information to each individual child’s requirements, in terms of any practical teaching materials, for example, a film, pictures, or other information. In this way, they can stimulate the children to ask their own questions. Children’s lived experience of IBD, and the fact that children in this age group need to strive for adaptedness and to experience themselves as healthy, can constitute an important basis for clinical implications. It is relevant for the reason that children often have ambitious goals that they, due to the negative impact of IBD on their physical and emotional condition, have difficulties in achieving. In order for the children to manage daily life they need support, which is something that healthcare professionals can offer, taking into account the variation of the children’s needs. Healthcare professionals could, for example, create opportunities for the children to meet other children with IBD, which could constitute an important factor in helping the children cope with their daily life.
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FURTHER RESEARCH
The findings of this thesis, based on the child/child’s perspective, indicate that an improvement is needed in the care of children with symptoms of, or diagnosed with, IBD, and future research in the form of similar studies from the child’s perspective is necessary in order to further improve paediatric care. It would be interesting to illuminate younger children’s and their parents’ experiences prior to colonoscopy. It would also be interesting to investigate the anxiety of children, in all age group, who undergo a colonoscopy. There are few clinical studies in children which have evaluated the use of the different bowel cleansing protocols, and thus, the potential area for future randomised trials, with the same and other age groups of children, should include the development of child-friendly bowel cleansing laxatives. Furthermore, future studies that take the healthcare staff perspective are also needed, that is, studies that focus on the difficulties that healthcare staff may experience in the interaction with children of various ages who are prepared for colonoscopy.
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SVENSK SAMMANFATTNING
Inflammatorisk tarmsjukdom (IBD), bestående av Crohns sjukdom (CD) och ulcerös kolit (UC), är en kronisk sjukdom som drabbar både vuxna och barn. I Sverige idag finns cirka 60 000 individer som är diagnostiserade med sjukdomen. Även om endast cirka två procent av alla individer som har IBD är barn, har 10-25 procent av alla IBD-patienter insjuknat som barn (<18 år). Orsaken till insjuknandet är fortfarande oklar, men arvets betydelse är välkänd. Typiska symtom är: buksmärtor, diarré samt blod och slem i avföringen. Sjukdomens förlopp är svårt att kontrollera, då den kommer i skov och oftast utan förvarning. Hos barn som drabbas kan sjukdomen hämma tillväxten samt orsaka försenad pubertet. Diagnostiken baseras på en noggrann anamnes (sjukhistoria), en endoskopisk undersökning (endoskopi är ett samlingsnamn för undersökningar där ett endoskop används) samt inflammatoriska markörer i blod och avföring. Fortfarande finns inte någon kurativ behandling för sjukdomen, men befintliga behandlingar kan minska symtomen och drabbade barn kan uppleva relativt symtomfria perioder. Det är välkänt att sjukdomen har en negativ inverkan på barnets livskvalitet, och en koppling mellan sjukdomens aktivitet och sänkt livskvalitet har kunnat ses. Historiskt sett har forskningen kring barn med IBD fokuserat på föräldrars och professionellas perspektiv, medan denna avhandling baseras på barnens perspektiv, med fokus på barn i åldersgruppen 10-18 år. Koloskopi är en undersökning av tjocktarmen, ändtarmen och nedre delen av tunntarmen och räknas idag som ”golden standard” för att kunna ställa diagnosen IBD. De flesta koloskopier på barn görs då barnet är nedsövt och förberedelserna inför koloskopi är omfattande. För att koloskopi ska kunna
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genomföras är det nödvändigt att tarmen är ren. Undersökningen görs via ändtarmen med en mjuk slang försedd med kamera och ljus. Det övergripande syftet med denna avhandling var att undersöka barns perspektiv på att genomgå koloskopi och på att leva med IBD. Ett ytterligare syfte var att undersöka om natriumpikosulfat (NaPico) kan användas som ett lämpligt laxeringsalternativ för att rengöra tarmen inför koloskopi. I den första delstudien intervjuas 17 barn om sina upplevelser av att genomgå en koloskopi och dess förberedelse. Urvalskriterierna för att ingå i studien var: att barnet skulle genomgå en koloskopi för första gången och att barnet kunde tala och förstå svenska språket. Informanterna instruerades att berätta om sina upplevelser, och om de känslor och tankar som uppstod i samband med undersökningen. Intervjuerna transkriberades och analyserades med hjälp av innehållsanalys. I analysen av barnens berättelser framkom fyra kategorier: Att förbereda sig själv, Att hantera situationen, Att delta motvilligt och Att känna emotionellt stöd. Dessa kategorier utgjorde underlag för ett övergripande tema: En privat angelägenhet. Koloskopi och dess förberedelse beskrevs som något barnen inte var villiga att prata om med sina kompisar eller sjukvårdspersonalen, och det framkom att de hade olika strategier för att hantera situationen. Trots detta uttalade barnen behov av information och stöd för att klara undersökningen. Syftet med den andra delstudien var att belysa föräldrarnas upplevelser när deras barn genomgår en koloskopi med polyetylenglykolbaserat laxeringsmedel (PEG). Individuella intervjuer med 12 föräldrar (11 kvinnor och en man) utfördes 7-10 dagar efter barnens koloskopi. Intervjuerna analyserades med innehållsanalys. Föräldrarna hade motstridiga känslor när de var tvungna att få barnet att dricka laxeringsmedlet och när de upplevde att de inte kunde visa sin empati för barnet. De upplevde att de saknade vägledning av sjukvårdspersonalen, och de hade en känsla av att de förlorade sin föräldraroll. Dessa två delstudier ledde fram till den tredje studien med syftet att jämföra tarmrengöring vid användande av PEG och natriumpikosulfat (NaPico) samt barnens tolerans och acceptans av dessa. Studien genomfördes som en randomiserad kontrollerad studie. Totalt erbjöds 84 barn och föräldrar att
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delta och 72 barn med medföljande föräldrar deltog i undersökningen. Den undersökande läkaren bedömde tarmens renhet med hjälp av ett instrument. För att mäta barnens tolerans respektive acceptans användes två olika enkäter. Totalt 71 barn genomgick koloskopi, varav 67 protokoll fanns tillgängliga för analys gällande tarmrensningskvalitet. Alla koloskopier kunde genomföras. Statistiska beräkningar visade att det inte fanns någon skillnad mellan grupperna gällande renhet; dock tolererade och accepterade barnen NaPico signifikant bättre, utifrån såväl barnens som föräldrarnas svar. Denna studie hade ett relativt lågt antal deltagare, varför NaPico endast kan rekommenderas som ett möjligt alternativ till PEG. Den fjärde studien syftade till att belysa barnens levda erfarenhet av att ha sjukdomen IBD. Fenomenologisk hermeneutik användes som analysmetod då intervjuer med sju barn (tre flickor och fyra pojkar) mellan 13 och18 år analyserades. De svårigheter barnen upplevde i det dagliga livet var framför allt baserade på sjukdomens oförutsägbara och okontrollerade karaktär. De strävade efter att känna sig friska och ville upplevas som friska av sin omgivning. Barnen kopplade helt och hållet sin sjukdom till tarmen och inte till sig själva som individer. Sjukdomen påverkade barnens liv negativt, men barnen berättade också att de bemödade sig om att återskapa den balans som gått förlorad på grund av sjukdomen.
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ACKNOWLEDGEMENTS
This thesis was carried out at the Department of Care Science, Faculty of Health and Society, Malmö University, and I am grateful for the opportunity to write it. I would like to extend my warmest gratitude to everyone who has had any part in this work, but first and foremost to all the children and their parents who contributed with their participation. I would also like to express my sincere gratitude to the following persons: My supervisor, Professor Ewa Idvall, Department of Care Science, Faculty of Health and Society, Malmö University. Thank you for believing in me and letting me grow through my research education, and for your valuable critique when reading my manuscripts and discussing them with me. My co-supervisor, Senior Lecturer Ann-Cathrine Bramhagen, Department of Care Science, Faculty of Health and Society, Malmö University. Thank you for your encouraging words and support. I was often beset by doubts, but you never doubted me. Thank you for your valuable critique and our discussions, and thank you for being with me. My co-supervisor, Senior Lecturer Anne Wennick, Department of Care Science, Faculty of Health and Society, Malmö University. Thank you for sharing your knowledge with me and for your valuable critique. My co-author, Associate Professor Daniel Agardh, Children’s University Hospital, Malmö. Thank you for your support and speedy, valuable comments, and for believing in me and my ideas.
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My contact person and colleague, Anna Andersson, thank you for your important assistance with my studies, especially regarding study III. Professor Per-Anders Tengland, Department of Care Science, Faculty of Health and Society, Malmö University. Thank you for being generously supportive throughout the analysing process of the data in study IV. Professor Ania Willman, Department of Care Science, Faculty of Health and Society, Malmö University. Thank you for reading and commenting on paper IV. Elisabeth Carlsson and Mia Hylén, thank you for taking the time to read and comment on my thesis and for helping me to get in the right direction with it. Håkan Lövquist, thank you for your help with the statistics in paper III. Katarina Graah-Hagelbäck, thank you for your careful proofreading of parts of this thesis. Karin Örmon, my colleague, roommate and dear friend, thank you for all your support. You are very valuable to me. My doctoral colleagues Jenny, Annika, Mona, and Christel, thank you for all our discussions, your constructive criticism, and your confidence in me during this time. Special thanks to Annette Holst-Hansson, my doctoral colleague, my friend, and my companion in many courses. Thank you for all the moments when we laughed and cried together, and for being a nice and supportive friend through all these years. My colleagues at the Faculty of Health and Society, thank you for your interest in my work. Special thanks to Marianne Kisthinios, Anne-Marie Wangel, and Anna Carlsson for all our precious coffee breaks and for being there and listening; to Monzer El-Dakkak and Vedran Boskovic for IT support; to Hélena Bogazzi for practical matters; to Maria Brandström for layout support; and to Mikael Matteson for reading through the Swedish summary.
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My dear friend Margareta Jalmtorp, who is with me in spirit, thank you for being my friend. My wonderful friends, Zeljka and Tomislav Josipovic, Lejla and Emir Hadjihasanovic, Yvonne and Carl-Gustav Christenssen, and the Kovacevic family, thank you for being there and enriching my life. My parents, Maja-Antonija and Sefik Alajbegovic, thank you for always being there and believing in me. My wonderful sister and my best friend, Sanja, and her family, Milorad-Bato, Srdjan, and Aljosa Remetic, thank you for being such an important part of my life, for believing in me and listening. I love you! Finally, but most especially, my children Sasa, Dino (my angel) and Denni, thank you for your love and belief in me. Thank you Dino for showing me which way I need to go. My love for you is eternal. My daughter-in-law Silvia Marinkovic, my grandchild Stella, and my bonus grandchild Danilo, thank you for enriching my life. Last in this thesis but first in my heart, the love of my life Asim Lola Vejzovic. Thank you for all your infinite love and patience. I love you all!
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APPENDICES
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88
Appendix I Questionnaire for acceptability (III)
88
FRÅGEFORMULÄR
Del II. Hur barnet och vårdnadshavare har upplevt förberedelseproceduren
Svaras av både barnet/ungdomen och vårdnadshavare.
Sätt ett kryss i rutan som bäst överensstämmer med hur du har känt dig under förberedelsetiden.
Svaras av barnet/ungdom
1. Hur lätt var det att dricka tarmsköljningsmedicin?
Mycket lätt Lätt Svårt Mycket svårt
2. Hur smakade tarmrensningsmedicin?
Mycket gott Gott Illa Mycket illa
Svaras av vårdnadshavaren
1. Hur lätt var det att dricka tarmsköljningsmedicin för ditt barn enligt din uppfattning?
Mycket lätt Lätt Svårt Mycket svårt
2. Hur tror du att tarmsköljningsmedicin smakade?
Mycket gott Gott Illa Mycket illa
89
Appendix II Questionnaire for tolerability (III)
89
FRÅGEFORMULÄR
Del I. Hur barnet har mått under förberedelseproceduren
Svaras bara av barnet/ungdomen.
Sätt ett kryss i rutan som bäst överensstämmer med hur du har känt dig under förberedelsetiden.
Under tiden jag förbereddes inför koloskopi
Inte alls Lite Mycket Jättemycket
1 Har jag haft uppsvälld mage?
2 Har jag haft avföring?
3 Har jag haft ont i magen?
4 Har jag mått illa?
5 Har jag haft ont i huvudet?
6 Har jag varit orolig?
7 Har jag haft svårt att sova?
8 Har jag varit ledsen?
ORIGINAL ARTICLE
A private affair: children’s experiences prior to colonoscopy
Vedrana Vejzovic, Anne Wennick, Ewa Idvall and Ann-Cathrine Bramhagen
Aims and objectives. To illuminate children’s experiences prior to colonoscopy.
Background. It is well known that children need to be well prepared before
undergoing stressful medical procedures, and the goal of such preparations should
focus on minimising their level of anxiety. The clinical investigation of children
with suspected inflammatory bowel disease involves several steps, with colonos-
copy being routinely used to investigate the colon and the lower part of the small
intestine. To minimise children’s anxiety during various medical procedures, it is
important that information about their experiences is obtained directly from the
children themselves.
Design. A qualitative study.
Method. The study was designed as a qualitative interview study involving 17
children aged 10–17 years undergoing colonoscopy at a children’s university hos-
pital in Sweden. Verbatim transcripts were analysed using content analysis.
Results. The children’s experiences prior to colonoscopy were identified as
belonging to an overall theme, a private affair, and to four categories: preparing
yourself, mastering the situation, reluctantly participating and feeling emotional
support.
Conclusion. This study shows that children’s experiences prior to colonoscopy
are a private affair and that the preparation needs to be individually adapted for
the ‘preprocedural’ preparation to be comprehended.
Relevance to clinical practice. The children’s experiences ascertained in this study
can contribute to a greater understanding of children’s needs prior to a colonos-
copy and may provide professional care staff with the basis for future nursing
assessments.
Key words: children, children’s nurses, colonoscopy, paediatric nursing, patient’s
experience, preparation, qualitative study
What does this paper contribute
to the wider global clinical
community?
• Children’s experiences prior tocolonoscopy are a private affair,and the children need an individ-ually adapted preparation tocomprehend the ‘preprocedural’preparation.
• Increased knowledge of chil-dren’s experience prior to colo-noscopy can improve the chancesof healthcare staff carrying outthe colonoscopy in a way thatchildren experience as less dis-tressing.
Accepted for publication: 17 June 2014
Authors: Vedrana Vejzovic, RN, RSCN, MNSc, Doctoral Student,
Department of Care Science, Faculty of Health and Society, Malm€o
University, Malm€o, Sweden; Anne Wennick, PhD, RN, RSCN,
Senior Lecturer, Department of Care Science, Faculty of Health
and Society, Malm€o University, Malm€o, Sweden; Ewa Idvall, PhD,
RN, Professor, Department of Care Science, Faculty of Health and
Society, Malm€o University, and Department of Intensive Care and
Perioperative Medicine, Sk�ane University Hospital, Malm€o,
Sweden; Ann-Cathrine Bramhagen, PhD, RN, RSCN, Senior
Lecturer, Department of Care Science, Faculty of Health and
Society, Malm€o University and Sk�ane University Hospital, Malm€o,
Sweden
Correspondence: Vedrana Vejzovic, Doctoral Student, Department
of Care Sciences, Faculty of Health and Society, Malm€o University,
SE-205 06 Malm€o, Sweden. Telephone: +46 40 665 74 46.
E-mail: [email protected]
© 2014 John Wiley & Sons Ltd
1038 Journal of Clinical Nursing, 24, 1038–1047, doi: 10.1111/jocn.12661
ORIGINAL ARTICLE
A private affair: children’s experiences prior to colonoscopy
Vedrana Vejzovic, Anne Wennick, Ewa Idvall and Ann-Cathrine Bramhagen
Aims and objectives. To illuminate children’s experiences prior to colonoscopy.
Background. It is well known that children need to be well prepared before
undergoing stressful medical procedures, and the goal of such preparations should
focus on minimising their level of anxiety. The clinical investigation of children
with suspected inflammatory bowel disease involves several steps, with colonos-
copy being routinely used to investigate the colon and the lower part of the small
intestine. To minimise children’s anxiety during various medical procedures, it is
important that information about their experiences is obtained directly from the
children themselves.
Design. A qualitative study.
Method. The study was designed as a qualitative interview study involving 17
children aged 10–17 years undergoing colonoscopy at a children’s university hos-
pital in Sweden. Verbatim transcripts were analysed using content analysis.
Results. The children’s experiences prior to colonoscopy were identified as
belonging to an overall theme, a private affair, and to four categories: preparing
yourself, mastering the situation, reluctantly participating and feeling emotional
support.
Conclusion. This study shows that children’s experiences prior to colonoscopy
are a private affair and that the preparation needs to be individually adapted for
the ‘preprocedural’ preparation to be comprehended.
Relevance to clinical practice. The children’s experiences ascertained in this study
can contribute to a greater understanding of children’s needs prior to a colonos-
copy and may provide professional care staff with the basis for future nursing
assessments.
Key words: children, children’s nurses, colonoscopy, paediatric nursing, patient’s
experience, preparation, qualitative study
What does this paper contribute
to the wider global clinical
community?
• Children’s experiences prior tocolonoscopy are a private affair,and the children need an individ-ually adapted preparation tocomprehend the ‘preprocedural’preparation.
• Increased knowledge of chil-dren’s experience prior to colo-noscopy can improve the chancesof healthcare staff carrying outthe colonoscopy in a way thatchildren experience as less dis-tressing.
Accepted for publication: 17 June 2014
Authors: Vedrana Vejzovic, RN, RSCN, MNSc, Doctoral Student,
Department of Care Science, Faculty of Health and Society, Malm€o
University, Malm€o, Sweden; Anne Wennick, PhD, RN, RSCN,
Senior Lecturer, Department of Care Science, Faculty of Health
and Society, Malm€o University, Malm€o, Sweden; Ewa Idvall, PhD,
RN, Professor, Department of Care Science, Faculty of Health and
Society, Malm€o University, and Department of Intensive Care and
Perioperative Medicine, Sk�ane University Hospital, Malm€o,
Sweden; Ann-Cathrine Bramhagen, PhD, RN, RSCN, Senior
Lecturer, Department of Care Science, Faculty of Health and
Society, Malm€o University and Sk�ane University Hospital, Malm€o,
Sweden
Correspondence: Vedrana Vejzovic, Doctoral Student, Department
of Care Sciences, Faculty of Health and Society, Malm€o University,
SE-205 06 Malm€o, Sweden. Telephone: +46 40 665 74 46.
E-mail: [email protected]
© 2014 John Wiley & Sons Ltd
1038 Journal of Clinical Nursing, 24, 1038–1047, doi: 10.1111/jocn.12661
Introduction
The incidence of paediatric inflammatory bowel disease
(IBD) is increasing worldwide (Sawczenko et al. 2001,
Kugathasan et al. 2003, Turunen et al. 2006, Pant et al.
2013). The overall incidence of paediatric IBD in the USA,
for example, doubled between 1991–2002 (Malaty et al.
2010). Similar trends have been reported in Sweden, with
recent reports from the Stockholm region showing that 133
children were diagnosed with IBD between 2002–2007.
This is a significant (4�8%) increase in annual incidence
(Malmborg et al. 2013) above that observed between
1990–2001 (Hildebrand et al. 2003). At present, the clini-
cal investigation of children with suspected IBD involves
several steps, with colonoscopy being routinely used to
investigate the colon and the lower part of the small intes-
tine (ESPGHAN, 2005).
A safe, informative and effective colonoscopy, performed
in a child-friendly atmosphere, with minimum distress to
the child is the recommended best practice in the care of
children (Thomson 2001). To minimise a child’s anxiety
during various medical procedures, it is important that
information about the children’s experiences is obtained
directly from the children themselves (Haskard et al. 2009).
Background
Preparation prior to colonoscopy has different aspects, one
of which is the practical preparation for the examination
itself, while another is the emotional preparation. Before
the colonoscopy is performed, the child needs to undergo
several procedures in order for the examination to be
implemented, with a cleansing of the colon being the most
crucial (e.g. Turcotte et al. 2012, Elisur et al. 2013). There
are several bowel cleansing regimens available in paediatric
colonoscopy, none of which is always easy for the child
(Thomson 2001).
Turner et al. (2010) did not identify a single ideal regi-
men, identifying instead several evidence-based protocols
for evaluation in the search for an optimal method for pae-
diatric bowel cleansing.
It is well known that children need to be well prepared
before undergoing stressful medical procedures, and the
goal of this preparation is to minimise their level of anxiety
(Li & Lopez 2007, Pelander & Leino-Klipi 2010), which is
the emotion reported most frequently prior to a stressful
medical procedure (Li & Lopez 2007). Age, past illness
experience, social and cultural factors and family context
impact how children experience the preparation. For
example, psychological preparation by demonstrating the
materials to be used has been shown by Mahajan et al.
(1998) to reduce significantly self-reported anxiety before
and during an endoscopy among children aged 6–19 years.
It is recommended that prior to a colonoscopy, the patient
and parents watch preparatory videos containing informa-
tion about what is to be expected (Thomson 2001). Tanaka
et al. (2011) found that psychological preparation before
an endoscopy, including therapeutic play, was required to
reduce fear, misunderstandings and other forms of
psychological stress. Parents feel that preparation is an
effective way to enhance understanding and reduce stress
and anxiety in children (Thomson 2001, Tanaka et al.
2011).
Children want to actively participate in decisions made
about their care, and age-appropriate information can
reduce stress as well as anxiety (Jaaniste et al. 2007, Hull
& Clark 2010). Children aged 7–11 years think logically,
and over the age of 11, children develop abstract thinking
(Piaget & Inhelder 1969). However, another factor to be
taken into account, besides chronological age, is a child’s
wish to agree with a given decision depending upon their
own related experience, the type of decision, information
and support given by adults (Alderson et al. 2006).
This is something to bear in mind when preparing chil-
dren for a procedure in a healthcare setting (Hull & Clark
2010). Furthermore, children who are satisfied with the
amount of information they have received rate themselves
as less frightened to return to the hospital (Gordon et al.
2010).
Children appreciate being given praise by nurses when
undergoing unpleasant procedures, as well as when taking
medication that tastes unpleasant (Brady et al. 2009).
Children also appreciate being given options in connection
with their care and feel valued when being asked to make
decisions (Moules et al. 2010). Despite studies that have
described how children are prepared in advance of a
colonoscopy in terms of the bowel cleansing procedure
(Tanaka et al. 2011), we are not aware of previous
studies that have focused on the child’s experiences prior
to colonoscopy.
Aim
To illuminate children’s experiences prior to colonoscopy.
Methods
The study has a qualitative design in which interviews have
been used to elicit the experiences of children undergoing a
colonoscopy at a children’s university hospital in Sweden.
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1038–1047 1039
Original article Experience of Swedish children
Sample
Participants (n = 17) were children of both genders (12
girls and five boys) of an age ranging from 10–17 years
(md = 13). The age of the children selected for our study
was based on the work of Sawczenko and Sandhu (2003),
who found that the median age of paediatric IBD onset in
children is 12 years.
The inclusion criteria for the children with suspected IBD
were that they were to undergo an elective first colonos-
copy and that they understood the study information. A
total of 22 children were asked consecutively if they wished
to participate, with five declining.
Data collection
Written information about the study, for both the child
and the parents, was attached to the letter scheduling the
colonoscopy. During the child’s first precolonoscopy clinic
visit, the responsible gastroenterological nurse sought their
approval to be telephoned by the first author for verbal
study information. Those who agreed received a call dur-
ing which the family was given the opportunity to ask
further questions about the study. After being given two
days to reflect, the child and their parents were asked
whether the child wished to participate. Verbal informed
consent was obtained from those parents whose children
agreed to participate, whereupon a time and location for
the interview, chosen by the family, was scheduled. The
interviews were conducted from 3–10 days after the colo-
noscopy. At the time of the interview, written informed
consent was obtained from both the parents and children
older than 15 years. In the families with younger chil-
dren, the parents gave written consent and the children
gave their verbal assent. Most of the interviews (n = 14)
took place in the child’s home; however, three were held
at the hospital. No parents were present during eleven of
the interviews. In five instances, the parents were present
a few minutes at the beginning of their child’s interview,
and on one occasion, a cousin who provided emotional
support was present. The interviews were conducted in
2012.
Interviews
All interviews began with the interviewer introducing
herself and presenting the study, as well as with a
general conversation about the child’s school and inter-
ests. In this way, the children were provided with the
opportunity to ask questions about what they felt was
important, as well as providing the interviewer with the
opportunity to adapt the interview technique to each
individual child.
The interviews started with an input question allowing
the children to describe the reason why the colonoscopy
had been performed, followed by an open question about
their experiences prior to the colonoscopy. The interviews
with the children had conversational character and
follow-up questions such as ‘What do you mean?’, ‘Could
you explain?’ and ‘Could you tell me a bit more
about that?’ were frequently asked throughout the inter-
views. To conclude the interviews, the children were
asked the closing question, ‘If you had a friend who
needed to undergo the same procedure, what would you
tell them?’
After the first interview, three of the authors listened to
the recording to ensure that the questions covered all areas
of the study and that the interview technique was suitably
adapted for children. The duration of the interviews varied
from 10–48 minutes (md = 29), in accordance with each
child’s eagerness to participate.
Data analysis
The analysis of the data was conducted in the form of
content analysis influenced by the work of Burnard (1996)
and Burnard et al. (2008). All of the interviews were
recorded for later transcription and were conducted by
one of the authors who were not involved in the child’s
preparation, investigation or treatment. To gain a sense of
the overall text, the transcripts were first read and re-read
by the first author to ensure familiarity with the data
prior to the development of words and phrases that
described the children’s experiences of preparation prior to
colonoscopy. For a deeper understanding of the data, all
interviews were subsequently read by the second and
fourth author. Sentences containing information about the
children’s experiences of preparation prior to colonoscopy
were extracted and condensed with the aim of summaris-
ing the text while retaining the content. The same authors
then individually open-coded the data to provide a sum-
marised statement or word for each of the elements that
were used by the children in the text. The various descrip-
tions were placed under corresponding codes. The authors
together categorised the data several times, developing
four categories to represent all the data. In the final stage
of the analysis process, the underlying meaning of the cat-
egories was assessed and one overall theme was identified
and formulated. Examples of the data analysis are pre-
sented in Tables 1 and 2.
© 2014 John Wiley & Sons Ltd
1040 Journal of Clinical Nursing, 24, 1038–1047
V Vejzovic et al.
Introduction
The incidence of paediatric inflammatory bowel disease
(IBD) is increasing worldwide (Sawczenko et al. 2001,
Kugathasan et al. 2003, Turunen et al. 2006, Pant et al.
2013). The overall incidence of paediatric IBD in the USA,
for example, doubled between 1991–2002 (Malaty et al.
2010). Similar trends have been reported in Sweden, with
recent reports from the Stockholm region showing that 133
children were diagnosed with IBD between 2002–2007.
This is a significant (4�8%) increase in annual incidence
(Malmborg et al. 2013) above that observed between
1990–2001 (Hildebrand et al. 2003). At present, the clini-
cal investigation of children with suspected IBD involves
several steps, with colonoscopy being routinely used to
investigate the colon and the lower part of the small intes-
tine (ESPGHAN, 2005).
A safe, informative and effective colonoscopy, performed
in a child-friendly atmosphere, with minimum distress to
the child is the recommended best practice in the care of
children (Thomson 2001). To minimise a child’s anxiety
during various medical procedures, it is important that
information about the children’s experiences is obtained
directly from the children themselves (Haskard et al. 2009).
Background
Preparation prior to colonoscopy has different aspects, one
of which is the practical preparation for the examination
itself, while another is the emotional preparation. Before
the colonoscopy is performed, the child needs to undergo
several procedures in order for the examination to be
implemented, with a cleansing of the colon being the most
crucial (e.g. Turcotte et al. 2012, Elisur et al. 2013). There
are several bowel cleansing regimens available in paediatric
colonoscopy, none of which is always easy for the child
(Thomson 2001).
Turner et al. (2010) did not identify a single ideal regi-
men, identifying instead several evidence-based protocols
for evaluation in the search for an optimal method for pae-
diatric bowel cleansing.
It is well known that children need to be well prepared
before undergoing stressful medical procedures, and the
goal of this preparation is to minimise their level of anxiety
(Li & Lopez 2007, Pelander & Leino-Klipi 2010), which is
the emotion reported most frequently prior to a stressful
medical procedure (Li & Lopez 2007). Age, past illness
experience, social and cultural factors and family context
impact how children experience the preparation. For
example, psychological preparation by demonstrating the
materials to be used has been shown by Mahajan et al.
(1998) to reduce significantly self-reported anxiety before
and during an endoscopy among children aged 6–19 years.
It is recommended that prior to a colonoscopy, the patient
and parents watch preparatory videos containing informa-
tion about what is to be expected (Thomson 2001). Tanaka
et al. (2011) found that psychological preparation before
an endoscopy, including therapeutic play, was required to
reduce fear, misunderstandings and other forms of
psychological stress. Parents feel that preparation is an
effective way to enhance understanding and reduce stress
and anxiety in children (Thomson 2001, Tanaka et al.
2011).
Children want to actively participate in decisions made
about their care, and age-appropriate information can
reduce stress as well as anxiety (Jaaniste et al. 2007, Hull
& Clark 2010). Children aged 7–11 years think logically,
and over the age of 11, children develop abstract thinking
(Piaget & Inhelder 1969). However, another factor to be
taken into account, besides chronological age, is a child’s
wish to agree with a given decision depending upon their
own related experience, the type of decision, information
and support given by adults (Alderson et al. 2006).
This is something to bear in mind when preparing chil-
dren for a procedure in a healthcare setting (Hull & Clark
2010). Furthermore, children who are satisfied with the
amount of information they have received rate themselves
as less frightened to return to the hospital (Gordon et al.
2010).
Children appreciate being given praise by nurses when
undergoing unpleasant procedures, as well as when taking
medication that tastes unpleasant (Brady et al. 2009).
Children also appreciate being given options in connection
with their care and feel valued when being asked to make
decisions (Moules et al. 2010). Despite studies that have
described how children are prepared in advance of a
colonoscopy in terms of the bowel cleansing procedure
(Tanaka et al. 2011), we are not aware of previous
studies that have focused on the child’s experiences prior
to colonoscopy.
Aim
To illuminate children’s experiences prior to colonoscopy.
Methods
The study has a qualitative design in which interviews have
been used to elicit the experiences of children undergoing a
colonoscopy at a children’s university hospital in Sweden.
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1038–1047 1039
Original article Experience of Swedish children
Sample
Participants (n = 17) were children of both genders (12
girls and five boys) of an age ranging from 10–17 years
(md = 13). The age of the children selected for our study
was based on the work of Sawczenko and Sandhu (2003),
who found that the median age of paediatric IBD onset in
children is 12 years.
The inclusion criteria for the children with suspected IBD
were that they were to undergo an elective first colonos-
copy and that they understood the study information. A
total of 22 children were asked consecutively if they wished
to participate, with five declining.
Data collection
Written information about the study, for both the child
and the parents, was attached to the letter scheduling the
colonoscopy. During the child’s first precolonoscopy clinic
visit, the responsible gastroenterological nurse sought their
approval to be telephoned by the first author for verbal
study information. Those who agreed received a call dur-
ing which the family was given the opportunity to ask
further questions about the study. After being given two
days to reflect, the child and their parents were asked
whether the child wished to participate. Verbal informed
consent was obtained from those parents whose children
agreed to participate, whereupon a time and location for
the interview, chosen by the family, was scheduled. The
interviews were conducted from 3–10 days after the colo-
noscopy. At the time of the interview, written informed
consent was obtained from both the parents and children
older than 15 years. In the families with younger chil-
dren, the parents gave written consent and the children
gave their verbal assent. Most of the interviews (n = 14)
took place in the child’s home; however, three were held
at the hospital. No parents were present during eleven of
the interviews. In five instances, the parents were present
a few minutes at the beginning of their child’s interview,
and on one occasion, a cousin who provided emotional
support was present. The interviews were conducted in
2012.
Interviews
All interviews began with the interviewer introducing
herself and presenting the study, as well as with a
general conversation about the child’s school and inter-
ests. In this way, the children were provided with the
opportunity to ask questions about what they felt was
important, as well as providing the interviewer with the
opportunity to adapt the interview technique to each
individual child.
The interviews started with an input question allowing
the children to describe the reason why the colonoscopy
had been performed, followed by an open question about
their experiences prior to the colonoscopy. The interviews
with the children had conversational character and
follow-up questions such as ‘What do you mean?’, ‘Could
you explain?’ and ‘Could you tell me a bit more
about that?’ were frequently asked throughout the inter-
views. To conclude the interviews, the children were
asked the closing question, ‘If you had a friend who
needed to undergo the same procedure, what would you
tell them?’
After the first interview, three of the authors listened to
the recording to ensure that the questions covered all areas
of the study and that the interview technique was suitably
adapted for children. The duration of the interviews varied
from 10–48 minutes (md = 29), in accordance with each
child’s eagerness to participate.
Data analysis
The analysis of the data was conducted in the form of
content analysis influenced by the work of Burnard (1996)
and Burnard et al. (2008). All of the interviews were
recorded for later transcription and were conducted by
one of the authors who were not involved in the child’s
preparation, investigation or treatment. To gain a sense of
the overall text, the transcripts were first read and re-read
by the first author to ensure familiarity with the data
prior to the development of words and phrases that
described the children’s experiences of preparation prior to
colonoscopy. For a deeper understanding of the data, all
interviews were subsequently read by the second and
fourth author. Sentences containing information about the
children’s experiences of preparation prior to colonoscopy
were extracted and condensed with the aim of summaris-
ing the text while retaining the content. The same authors
then individually open-coded the data to provide a sum-
marised statement or word for each of the elements that
were used by the children in the text. The various descrip-
tions were placed under corresponding codes. The authors
together categorised the data several times, developing
four categories to represent all the data. In the final stage
of the analysis process, the underlying meaning of the cat-
egories was assessed and one overall theme was identified
and formulated. Examples of the data analysis are pre-
sented in Tables 1 and 2.
© 2014 John Wiley & Sons Ltd
1040 Journal of Clinical Nursing, 24, 1038–1047
V Vejzovic et al.
Ethical considerations
Ethical approval was granted by the Regional Ethical
Review Board in Lund (Ref. No. 2011/155). Potential
infringement of the children’s privacy was taken into con-
sideration in relation to the interviews, as accounts were
obtained of their experiences of an investigation that is con-
sidered by many to be unpleasant. The interviews would, in
addition, have taken time away from other activities, which
could have been perceived as negative. One benefit of the
study could have been that the children were given the
opportunity to speak about their experiences, an opportu-
nity that might not otherwise have been available to them.
Setting
At the time of the study, the number of paediatric colonos-
copies at the study hospital was approximately 50 per year.
The colonoscopies were performed in accordance with stan-
dard procedures. Before being admitted to the hospital,
children were briefed about the procedure both in writing
and in verbally. Two to three days prior to the bowel pre-
parative regime, various capillary blood samples were
taken, and the children were recommended to start on a
special diet. The bowel preparation comprised a polyethyl-
ene glycol-based laxative (PEG) given over two days with
the child as an inpatient in the paediatric department. The
dose of PEG was 25–35 ml/kg and was administered over
several hours, either orally or by nasogastric tube, until
clear intestinal fluid was obtained. The children were not
allowed to eat while the laxative was being administered.
The use of a nasogastric tube depended upon the child’s
willingness and ability to take in the prescribed fluid. If the
diarrhoea fluid was reported as unclean, a rectal bowel
preparation was performed in the morning of the day of
the colonoscopy. The preparatory procedure also involved
the insertion of a peripheral venous catheter and prepara-
tion for the administration of a general anaesthetic. The
colonoscopy was performed while the child was under gen-
eral anaesthetic.
Results
The children’s experiences prior to colonoscopy were iden-
tified as belonging to an overall theme, a private affair, and
to four categories: preparing yourself, mastering the situa-
tion, reluctantly participating and feeling emotional
support. To enhance the conformance of the study’s find-
ings, quotations from the original transcripts have been
provided for each category to clarify its inherent meaning.
A private affair
The way the children prepared themselves, mastered the
situation, their reluctant participation, yet strengthened
support participated reluctantly and felt supported showed
that this was something that only was of a concern to
them. On the other hand, the children were in need of
support from others to be able to prepare prior to the
colonoscopy. Outside the hospital, the children neither
spoke openly about their abdominal symptoms nor of the
colonoscopy. They preferred to speak to their parents who
had been present and involved in the preparatory procedure
Table 1 An example of an initial coding framework
Interview transcript Open coding Initial coding framework
The doctor said that they needed to do a colonoscopy to find out what
was wrong. He explained that it would be done while I was under a
general anaesthetic and that I should not worry. Then he did not say
anything else. I wish he had done. My gran had the same test and she
told me that was unpleasant and tough and he did not say anything
about that. (I.P. 3 p. 1 h. 9)
Information from doctor
Do not worry
Little information, wanted more
Grandmother had experience
Grandmother’s narrative
Information from healthcare
staff
Information from relatives
Table 2 An example of a final coding framework after reduction
of the categories in the initial coding framework
Final coding framework Initial coding framework
1. Preparing yourself Information from healthcare staff
Information from parents/relatives
Information they sought out themselves
Questions/thoughts
2. Mastering
the situation
Hard/tough/disgusting taking the laxative
Participation
3. Reluctantly
participating
Different strategies
Thoughts about the disease/colonoscopy
Fear/pain/anxiety
4. Feeling emotional
support
Stressful
Friends
Nice staff
Parents
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1038–1047 1041
Original article Experience of Swedish children
and kept their apprehension about certain aspects, such as
the diagnosis, to themselves. Keeping their thoughts to
themselves was felt to be a comfort and something private.
Most children reported experiencing various emotions
over the course of the process such as frustration, sadness,
anger, fear, anxiety and stress and did not wish to reveal
these emotions to anyone. Some children had told their
closest friends, albeit only in general terms, and some had
specifically avoided the term colonoscopy, referring to it
merely as an examination.
They experienced doubt about how the information
would be received if they were to speak about it, as they
felt that their friends ‘made jokes about everything’. In
some instances, the children expressed that they had
wished to withhold the information from their friends
out of consideration for them because their friends had
previously expressed fears in relation to various hospital
procedures.
The children did not speak much to the staff either,
mainly as they felt that the staff could not reliably report
experiences of a procedure that they had not undergone
themselves. Most children would only ask the healthcare
staff about practical details of the colonoscopy.
Preparing yourself
The children prepared themselves for the colonoscopy in
different ways. Some wanted detailed information about
each of its components, while others felt that it was enough
simply to know the exact time it would take place. The
children who felt that they were capable of preparing for
the procedure perceived that the information they received
was appropriate for their needs:
It felt safe because they really described everything. (IP11, age 17)
Some children relied on family members for information,
and although most doubted the credibility of information
that they obtained for themselves (and therefore avoided
it), some found answers to their questions on the internet:
/. . ./It was a camera that they used to check. . .. I checked it on the
internet. (IP 12 age 16)
Some information was felt to be insufficient and provided
with too little time before the procedure:
About four or five in the afternoon, they told me that I would be
having an enema. I wasn’t prepared for this, it wasn’t in the papers
and they hadn’t said anything about it . . .. (IP 8, age 17)
The importance of repeating information was frequently
emphasised. Some children reported that they did not know
much about the procedures, as they had not listened to the
healthcare staff when the information was given to them
during their inpatient stay:
I don’t remember that . . . I didn’t listen that much . . . I was tired
. . . Mum, she talked with her . . . Maybe she knows . . . No, I don’t
remember. (IP 4, age 12)
Some children felt that the information was not suffi-
cient, but they did not feel comfortable asking the health-
care staff questions; they said that they preferred to ask
their parents as this was perceived as easier. The children
had various ways of preparing themselves, from wanting all
available information to relying on their parents to collect
all of the necessary information.
Mastering the situation
The laxative solution, which was used to clean out the chil-
dren’s bowels, was described as tasting ‘disgusting’, ‘bad’,
‘awful’, ‘salty’ and/or ‘like oil’. Difficulties with ingesting
the large quantities of bad-tasting fluid stimulated them to
develop strategies to keep drinking. The children tried to
find methods to ease their passage through the process.
Some tried not to think much about the procedures. Some
tried to divert their thoughts, while others tried to find
ways to facilitate ingesting the laxative. Another did as they
were told without protesting to get themselves out of the
situation or because they believed that this was what was
expected of them:
I felt that everyone surrounding me expected me not to com-
plain. . ...I just felt it. . .so I didn’t do that. . .but the doctor said that
I had to do that and I did it. (IP3 age 17)
The children felt that by thinking nothing dangerous
could happen and that it was possible to forget about their
difficulty, things would be made easier:
I thought that it wasn’t dangerous, that it would soon be over. I
just thought that tomorrow is another day and then I’ll have done
this. (IP 6, age 16)
A number of children admitted to not being convinced of
the necessity for the prescribed quantity of fluid for the
cleansing of the colon, as they had not eaten anything for
two days. Some children reported that they had ‘cheated’
with the laxative. The children had their own individual
explanations for why they considered that the cleanliness of
the colon would not be affected by ‘a little cheating’. The
cheating with the laxative was not disclosed to either the
parents or the healthcare staff:
I cheated a little . . . didn’t drink it all . . . always left a bit . . . held
my nose . . . then you don’t taste it . . .. (IP 15, age 10)
© 2014 John Wiley & Sons Ltd
1042 Journal of Clinical Nursing, 24, 1038–1047
V Vejzovic et al.
Ethical considerations
Ethical approval was granted by the Regional Ethical
Review Board in Lund (Ref. No. 2011/155). Potential
infringement of the children’s privacy was taken into con-
sideration in relation to the interviews, as accounts were
obtained of their experiences of an investigation that is con-
sidered by many to be unpleasant. The interviews would, in
addition, have taken time away from other activities, which
could have been perceived as negative. One benefit of the
study could have been that the children were given the
opportunity to speak about their experiences, an opportu-
nity that might not otherwise have been available to them.
Setting
At the time of the study, the number of paediatric colonos-
copies at the study hospital was approximately 50 per year.
The colonoscopies were performed in accordance with stan-
dard procedures. Before being admitted to the hospital,
children were briefed about the procedure both in writing
and in verbally. Two to three days prior to the bowel pre-
parative regime, various capillary blood samples were
taken, and the children were recommended to start on a
special diet. The bowel preparation comprised a polyethyl-
ene glycol-based laxative (PEG) given over two days with
the child as an inpatient in the paediatric department. The
dose of PEG was 25–35 ml/kg and was administered over
several hours, either orally or by nasogastric tube, until
clear intestinal fluid was obtained. The children were not
allowed to eat while the laxative was being administered.
The use of a nasogastric tube depended upon the child’s
willingness and ability to take in the prescribed fluid. If the
diarrhoea fluid was reported as unclean, a rectal bowel
preparation was performed in the morning of the day of
the colonoscopy. The preparatory procedure also involved
the insertion of a peripheral venous catheter and prepara-
tion for the administration of a general anaesthetic. The
colonoscopy was performed while the child was under gen-
eral anaesthetic.
Results
The children’s experiences prior to colonoscopy were iden-
tified as belonging to an overall theme, a private affair, and
to four categories: preparing yourself, mastering the situa-
tion, reluctantly participating and feeling emotional
support. To enhance the conformance of the study’s find-
ings, quotations from the original transcripts have been
provided for each category to clarify its inherent meaning.
A private affair
The way the children prepared themselves, mastered the
situation, their reluctant participation, yet strengthened
support participated reluctantly and felt supported showed
that this was something that only was of a concern to
them. On the other hand, the children were in need of
support from others to be able to prepare prior to the
colonoscopy. Outside the hospital, the children neither
spoke openly about their abdominal symptoms nor of the
colonoscopy. They preferred to speak to their parents who
had been present and involved in the preparatory procedure
Table 1 An example of an initial coding framework
Interview transcript Open coding Initial coding framework
The doctor said that they needed to do a colonoscopy to find out what
was wrong. He explained that it would be done while I was under a
general anaesthetic and that I should not worry. Then he did not say
anything else. I wish he had done. My gran had the same test and she
told me that was unpleasant and tough and he did not say anything
about that. (I.P. 3 p. 1 h. 9)
Information from doctor
Do not worry
Little information, wanted more
Grandmother had experience
Grandmother’s narrative
Information from healthcare
staff
Information from relatives
Table 2 An example of a final coding framework after reduction
of the categories in the initial coding framework
Final coding framework Initial coding framework
1. Preparing yourself Information from healthcare staff
Information from parents/relatives
Information they sought out themselves
Questions/thoughts
2. Mastering
the situation
Hard/tough/disgusting taking the laxative
Participation
3. Reluctantly
participating
Different strategies
Thoughts about the disease/colonoscopy
Fear/pain/anxiety
4. Feeling emotional
support
Stressful
Friends
Nice staff
Parents
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1038–1047 1041
Original article Experience of Swedish children
and kept their apprehension about certain aspects, such as
the diagnosis, to themselves. Keeping their thoughts to
themselves was felt to be a comfort and something private.
Most children reported experiencing various emotions
over the course of the process such as frustration, sadness,
anger, fear, anxiety and stress and did not wish to reveal
these emotions to anyone. Some children had told their
closest friends, albeit only in general terms, and some had
specifically avoided the term colonoscopy, referring to it
merely as an examination.
They experienced doubt about how the information
would be received if they were to speak about it, as they
felt that their friends ‘made jokes about everything’. In
some instances, the children expressed that they had
wished to withhold the information from their friends
out of consideration for them because their friends had
previously expressed fears in relation to various hospital
procedures.
The children did not speak much to the staff either,
mainly as they felt that the staff could not reliably report
experiences of a procedure that they had not undergone
themselves. Most children would only ask the healthcare
staff about practical details of the colonoscopy.
Preparing yourself
The children prepared themselves for the colonoscopy in
different ways. Some wanted detailed information about
each of its components, while others felt that it was enough
simply to know the exact time it would take place. The
children who felt that they were capable of preparing for
the procedure perceived that the information they received
was appropriate for their needs:
It felt safe because they really described everything. (IP11, age 17)
Some children relied on family members for information,
and although most doubted the credibility of information
that they obtained for themselves (and therefore avoided
it), some found answers to their questions on the internet:
/. . ./It was a camera that they used to check. . .. I checked it on the
internet. (IP 12 age 16)
Some information was felt to be insufficient and provided
with too little time before the procedure:
About four or five in the afternoon, they told me that I would be
having an enema. I wasn’t prepared for this, it wasn’t in the papers
and they hadn’t said anything about it . . .. (IP 8, age 17)
The importance of repeating information was frequently
emphasised. Some children reported that they did not know
much about the procedures, as they had not listened to the
healthcare staff when the information was given to them
during their inpatient stay:
I don’t remember that . . . I didn’t listen that much . . . I was tired
. . . Mum, she talked with her . . . Maybe she knows . . . No, I don’t
remember. (IP 4, age 12)
Some children felt that the information was not suffi-
cient, but they did not feel comfortable asking the health-
care staff questions; they said that they preferred to ask
their parents as this was perceived as easier. The children
had various ways of preparing themselves, from wanting all
available information to relying on their parents to collect
all of the necessary information.
Mastering the situation
The laxative solution, which was used to clean out the chil-
dren’s bowels, was described as tasting ‘disgusting’, ‘bad’,
‘awful’, ‘salty’ and/or ‘like oil’. Difficulties with ingesting
the large quantities of bad-tasting fluid stimulated them to
develop strategies to keep drinking. The children tried to
find methods to ease their passage through the process.
Some tried not to think much about the procedures. Some
tried to divert their thoughts, while others tried to find
ways to facilitate ingesting the laxative. Another did as they
were told without protesting to get themselves out of the
situation or because they believed that this was what was
expected of them:
I felt that everyone surrounding me expected me not to com-
plain. . ...I just felt it. . .so I didn’t do that. . .but the doctor said that
I had to do that and I did it. (IP3 age 17)
The children felt that by thinking nothing dangerous
could happen and that it was possible to forget about their
difficulty, things would be made easier:
I thought that it wasn’t dangerous, that it would soon be over. I
just thought that tomorrow is another day and then I’ll have done
this. (IP 6, age 16)
A number of children admitted to not being convinced of
the necessity for the prescribed quantity of fluid for the
cleansing of the colon, as they had not eaten anything for
two days. Some children reported that they had ‘cheated’
with the laxative. The children had their own individual
explanations for why they considered that the cleanliness of
the colon would not be affected by ‘a little cheating’. The
cheating with the laxative was not disclosed to either the
parents or the healthcare staff:
I cheated a little . . . didn’t drink it all . . . always left a bit . . . held
my nose . . . then you don’t taste it . . .. (IP 15, age 10)
© 2014 John Wiley & Sons Ltd
1042 Journal of Clinical Nursing, 24, 1038–1047
V Vejzovic et al.
The ability to choose between drinking the laxative and
having it administered by means of a nasogastric tube was
experienced positively. However, when informed that the
nasogastric tube would be inserted ‘into the stomach
through the nose’, discomfort and fear arose. The children
were aware that the taste experience could be avoided in
this manner. In most cases, however, this was not consid-
ered a sufficient argument in favour of the procedure. Nev-
ertheless, some of the children agreed to the insertion of a
nasogastric tube while expressing that they found the proce-
dure to be as unpleasant as having something foreign in
their stomach felt unnatural:
They said . . . if I thought that it was too hard to drink it and taste
it, then I could get a tube in my throat . . . I would, like, swallow it
. . . I didn’t want to . . . I would rather not have it, not in my stom-
ach . . . I don’t like it . . . I think it will only get worse . . . I pre-
ferred to force myself to drink it. (IP 10, age 15)
The children hoped that the colonoscopy could be carried
out and that they would not have to undergo it again.
Some children perceived that no one could reliably describe
the experience of the preparation. They perceived that
experiencing the preparation themselves would be the only
way of knowing how it would feel and felt that they had to
find ways of managing the procedures by themselves:
No one can comfort you by saying that it doesn’t hurt when they
don’t know how much it hurts . . . and when they say ‘hurt’, you
don’t like know how much . . . you can only comfort yourself and
think that it’s more or less painful. (IP 10, age 15)
The children felt that it was important to master the situ-
ation and tried, in various ways and on their own, to ease
themselves through the examination and its preparation.
Reluctantly participating
The children felt reluctant to undergo the colonoscopy
while simultaneously seeing it as the only way to find
answers to questions about the ‘pesky’ symptoms. Knowing
that the physician would not be able to guarantee any con-
clusive findings was also a concern. When asked, every
child voluntarily agreed to undergo the colonoscopy; how-
ever, they felt that there was a limited opportunity to
decline:
No, first I did not drink; I wanted to ask them to take back the
glass. Then, so, you were forced to drink it. (IP 6, age 16)
Some children expressed that they did everything without
protest merely because their parents were concerned and as
they did not wish to cause their parents any further sadness
or worry:
I don’t think so much about what could happen . . . I can’t affect
that . . . I only thought that it would be OK and mum would be
happy. (IP 13, age 17)
Some children described how they were not convinced
that the colonoscopy was the best way of getting a diagno-
sis but that they wanted to do it to reduce their parents’
anxiety. One child described ‘mum’s nagging’ as bother-
some and therefore drank the laxative without protest:
Because my mum nagged and nagged and nagged, and I didn’t
want to hear anyone nagging, so I drank it. (IP 5, age 10)
Feeling emotional support
The children felt that their parents had supported them
before, during and after the procedure. They were confident
in their parents’ presence and felt that it was important that
they be present during the preparation to support them.
They felt that it was important that they were able to talk,
to ask questions and to openly display their emotions,
which could fluctuate from amusement to sadness. The chil-
dren recounted that the presence of their parents enabled
them to relax. The parents helped them to divert their
thoughts from the colonoscopy and supported them
through the especially difficult aspects of the process such
as ingesting the laxative:
She (the mother) had a lot of patience . . . I wasn’t perhaps the nic-
est person in the world. . . I was bad-tempered and she said ‘you
have to take another gulp’ and I didn’t want to and started to cry
. . . She supported me the whole time. (IP 17 age 17)
The children’s confidence in their parents increased when
they felt that their parents were informed about the prepa-
ration and when the parents demonstrated patience. How-
ever, some children did not wish to disclose their thoughts
and speculations in the presence of their parents or siblings,
as they felt that their family needed to be protected from
worry:
And so I thought about my mum, as she had become really sad the
first time she came with me. (IP 13, age 17)
‘Good’, ‘nice’ and ‘honest’ were words used by the chil-
dren when describing those members of the nursing staff on
whom they felt they could rely. Regardless of the children’s
positive experiences of the healthcare staff, most children
did not feel that they could speak openly with the staff:
No, we didn’t talk with them much. Gran (who had been through
the test herself) told me what would happen. They haven’t been
through it themselves. They (healthcare staff) don’t know. (IP 3,
age 16)
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1038–1047 1043
Original article Experience of Swedish children
The level of confidence in the healthcare staff varied from
child to child. This was often a result of the way in which
information was given about the proceedings:
Everyone was so nice and said that it would be OK so I thought
‘well OK’, even though I was worried. (IP 3, age 17)
Children felt insecure in situations where the healthcare
staff were felt to be stressed, or where the healthcare staff
failed to provide them with information. Some children per-
ceived that the staff expected them to undergo the prepara-
tions without protest. This notion had a negative effect on
their willingness to ask questions about various procedures
that were felt to be difficult. It was evident that the children
needed their parents’ support and that the children turned
to their parents for both advice and answers to their ques-
tions.
Discussion
The study shows that ‘a private affair’ is the most impor-
tant theme of children’s experience prior to colonoscopy.
The children were as determined not to speak openly about
their gastrointestinal problems as about the colonoscopy.
The results are in accordance with Reigada et al. (2011),
who showed that children with IBD are not willing to talk
about the symptoms they experience with either their peers
or their parents because of the embarrassing nature of their
symptoms and the perception that no one will understand.
However, for the purpose of this study, all the children
were eager to speak about their experiences. The children
wanted privacy but at the same time were open to share
their thoughts for the benefit of the study. This might indi-
cate a need to talk about what they experienced. The
opportunity of a conversation after the colonoscopy may
perhaps facilitate and contribute to reduced fear in relation
to future hospital procedures.
It was noted that some children were afraid of negative
reactions and chose not to disclose much about the colo-
noscopy to their friends. This is in consensus with Bernts-
son et al. (2007), who showed that some children with
chronic diseases chose not to disclose anything about
their disease to their friends to maintain their integrity,
yet they still felt that support from their friends was
important. In yet another study, Holmbeck (2002)
showed that children are exposed to great challenges in
their lives attempting to be like other children. This may
be one reason for the children’s unwillingness to talk
about the colonoscopy with their friends. It might be eas-
ier to talk to their friends about diseases that everyone
knows about.
The interviewed children felt that the preparation prior
to the colonoscopy was a demanding experience and that
they were obliged to undergo the colonoscopy. They had to
prepare themselves in their own way and master the situa-
tion to cope with it. The results also show that children,
regardless of age, need support from both their parents and
the healthcare staff to address the distressing concerns that
they experienced. They should at the same time have strate-
gies to care for themselves emotionally and psychologically.
This is confirmed by Forsner et al. (2005) in their study of
children’s (11–18 years old) experiences of being sick,
which showed that adolescents want to take care of them-
selves while simultaneously needing caring and warmth.
In the present study, children acquired information in dif-
ferent ways and, depending on their own ability to process
it, sought the help of their parents. Age-appropriate infor-
mation prior to coming to hospital, whether it comes from
nursing staff or parents, can minimise feelings of fear and
anxiety (Mahajan et al. 1998, Gordon et al. 2010). Plan-
ning admission and receiving information that the children
experienced as good can enhance the child’s willingness to
cooperate and can, moreover, minimise distress and
improve the child’s adjustment during and after the proce-
dure (Gordon et al.2010). Children who feel that they lack
the ability to influence the situation may become stressed
(Holmbeck 2002).
The children in the present study indicated that they had
expectations about the knowledge of the healthcare staff
and of their understanding of the children’s situation; how-
ever, the children also thought that first-hand experiences
of the procedures were important. Because we did not
observe the healthcare staff preparing the child for the colo-
noscopy, we can only presume that the standard informa-
tion was given with the child’s individual needs in mind.
The healthcare staff need more knowledge of children’s
requirements to minimise the anxiety of both the children
and their parents before, during and after a planned colo-
noscopy. This is confirmed by several other studies (Li &
Lopez 2007, Gursky et al. 2010, Robinson 2010). The chil-
dren’s accounts in the present study affirm the importance
of communication between all those involved. Cline et al.
(2006) identified communication as an important aspect of
the preparation prior to medical procedures, and Hull and
Clark (2010) emphasised the importance of placing addi-
tional focus on the manner in which communication is
implemented, instead of merely on what is communicated.
In cases where the parents had knowledge about the pro-
ceedings, children did not feel dependent on the informa-
tion provided by the healthcare staff and felt less stressed.
This finding is important and is confirmed by Gordon et al.
© 2014 John Wiley & Sons Ltd
1044 Journal of Clinical Nursing, 24, 1038–1047
V Vejzovic et al.
The ability to choose between drinking the laxative and
having it administered by means of a nasogastric tube was
experienced positively. However, when informed that the
nasogastric tube would be inserted ‘into the stomach
through the nose’, discomfort and fear arose. The children
were aware that the taste experience could be avoided in
this manner. In most cases, however, this was not consid-
ered a sufficient argument in favour of the procedure. Nev-
ertheless, some of the children agreed to the insertion of a
nasogastric tube while expressing that they found the proce-
dure to be as unpleasant as having something foreign in
their stomach felt unnatural:
They said . . . if I thought that it was too hard to drink it and taste
it, then I could get a tube in my throat . . . I would, like, swallow it
. . . I didn’t want to . . . I would rather not have it, not in my stom-
ach . . . I don’t like it . . . I think it will only get worse . . . I pre-
ferred to force myself to drink it. (IP 10, age 15)
The children hoped that the colonoscopy could be carried
out and that they would not have to undergo it again.
Some children perceived that no one could reliably describe
the experience of the preparation. They perceived that
experiencing the preparation themselves would be the only
way of knowing how it would feel and felt that they had to
find ways of managing the procedures by themselves:
No one can comfort you by saying that it doesn’t hurt when they
don’t know how much it hurts . . . and when they say ‘hurt’, you
don’t like know how much . . . you can only comfort yourself and
think that it’s more or less painful. (IP 10, age 15)
The children felt that it was important to master the situ-
ation and tried, in various ways and on their own, to ease
themselves through the examination and its preparation.
Reluctantly participating
The children felt reluctant to undergo the colonoscopy
while simultaneously seeing it as the only way to find
answers to questions about the ‘pesky’ symptoms. Knowing
that the physician would not be able to guarantee any con-
clusive findings was also a concern. When asked, every
child voluntarily agreed to undergo the colonoscopy; how-
ever, they felt that there was a limited opportunity to
decline:
No, first I did not drink; I wanted to ask them to take back the
glass. Then, so, you were forced to drink it. (IP 6, age 16)
Some children expressed that they did everything without
protest merely because their parents were concerned and as
they did not wish to cause their parents any further sadness
or worry:
I don’t think so much about what could happen . . . I can’t affect
that . . . I only thought that it would be OK and mum would be
happy. (IP 13, age 17)
Some children described how they were not convinced
that the colonoscopy was the best way of getting a diagno-
sis but that they wanted to do it to reduce their parents’
anxiety. One child described ‘mum’s nagging’ as bother-
some and therefore drank the laxative without protest:
Because my mum nagged and nagged and nagged, and I didn’t
want to hear anyone nagging, so I drank it. (IP 5, age 10)
Feeling emotional support
The children felt that their parents had supported them
before, during and after the procedure. They were confident
in their parents’ presence and felt that it was important that
they be present during the preparation to support them.
They felt that it was important that they were able to talk,
to ask questions and to openly display their emotions,
which could fluctuate from amusement to sadness. The chil-
dren recounted that the presence of their parents enabled
them to relax. The parents helped them to divert their
thoughts from the colonoscopy and supported them
through the especially difficult aspects of the process such
as ingesting the laxative:
She (the mother) had a lot of patience . . . I wasn’t perhaps the nic-
est person in the world. . . I was bad-tempered and she said ‘you
have to take another gulp’ and I didn’t want to and started to cry
. . . She supported me the whole time. (IP 17 age 17)
The children’s confidence in their parents increased when
they felt that their parents were informed about the prepa-
ration and when the parents demonstrated patience. How-
ever, some children did not wish to disclose their thoughts
and speculations in the presence of their parents or siblings,
as they felt that their family needed to be protected from
worry:
And so I thought about my mum, as she had become really sad the
first time she came with me. (IP 13, age 17)
‘Good’, ‘nice’ and ‘honest’ were words used by the chil-
dren when describing those members of the nursing staff on
whom they felt they could rely. Regardless of the children’s
positive experiences of the healthcare staff, most children
did not feel that they could speak openly with the staff:
No, we didn’t talk with them much. Gran (who had been through
the test herself) told me what would happen. They haven’t been
through it themselves. They (healthcare staff) don’t know. (IP 3,
age 16)
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1038–1047 1043
Original article Experience of Swedish children
The level of confidence in the healthcare staff varied from
child to child. This was often a result of the way in which
information was given about the proceedings:
Everyone was so nice and said that it would be OK so I thought
‘well OK’, even though I was worried. (IP 3, age 17)
Children felt insecure in situations where the healthcare
staff were felt to be stressed, or where the healthcare staff
failed to provide them with information. Some children per-
ceived that the staff expected them to undergo the prepara-
tions without protest. This notion had a negative effect on
their willingness to ask questions about various procedures
that were felt to be difficult. It was evident that the children
needed their parents’ support and that the children turned
to their parents for both advice and answers to their ques-
tions.
Discussion
The study shows that ‘a private affair’ is the most impor-
tant theme of children’s experience prior to colonoscopy.
The children were as determined not to speak openly about
their gastrointestinal problems as about the colonoscopy.
The results are in accordance with Reigada et al. (2011),
who showed that children with IBD are not willing to talk
about the symptoms they experience with either their peers
or their parents because of the embarrassing nature of their
symptoms and the perception that no one will understand.
However, for the purpose of this study, all the children
were eager to speak about their experiences. The children
wanted privacy but at the same time were open to share
their thoughts for the benefit of the study. This might indi-
cate a need to talk about what they experienced. The
opportunity of a conversation after the colonoscopy may
perhaps facilitate and contribute to reduced fear in relation
to future hospital procedures.
It was noted that some children were afraid of negative
reactions and chose not to disclose much about the colo-
noscopy to their friends. This is in consensus with Bernts-
son et al. (2007), who showed that some children with
chronic diseases chose not to disclose anything about
their disease to their friends to maintain their integrity,
yet they still felt that support from their friends was
important. In yet another study, Holmbeck (2002)
showed that children are exposed to great challenges in
their lives attempting to be like other children. This may
be one reason for the children’s unwillingness to talk
about the colonoscopy with their friends. It might be eas-
ier to talk to their friends about diseases that everyone
knows about.
The interviewed children felt that the preparation prior
to the colonoscopy was a demanding experience and that
they were obliged to undergo the colonoscopy. They had to
prepare themselves in their own way and master the situa-
tion to cope with it. The results also show that children,
regardless of age, need support from both their parents and
the healthcare staff to address the distressing concerns that
they experienced. They should at the same time have strate-
gies to care for themselves emotionally and psychologically.
This is confirmed by Forsner et al. (2005) in their study of
children’s (11–18 years old) experiences of being sick,
which showed that adolescents want to take care of them-
selves while simultaneously needing caring and warmth.
In the present study, children acquired information in dif-
ferent ways and, depending on their own ability to process
it, sought the help of their parents. Age-appropriate infor-
mation prior to coming to hospital, whether it comes from
nursing staff or parents, can minimise feelings of fear and
anxiety (Mahajan et al. 1998, Gordon et al. 2010). Plan-
ning admission and receiving information that the children
experienced as good can enhance the child’s willingness to
cooperate and can, moreover, minimise distress and
improve the child’s adjustment during and after the proce-
dure (Gordon et al.2010). Children who feel that they lack
the ability to influence the situation may become stressed
(Holmbeck 2002).
The children in the present study indicated that they had
expectations about the knowledge of the healthcare staff
and of their understanding of the children’s situation; how-
ever, the children also thought that first-hand experiences
of the procedures were important. Because we did not
observe the healthcare staff preparing the child for the colo-
noscopy, we can only presume that the standard informa-
tion was given with the child’s individual needs in mind.
The healthcare staff need more knowledge of children’s
requirements to minimise the anxiety of both the children
and their parents before, during and after a planned colo-
noscopy. This is confirmed by several other studies (Li &
Lopez 2007, Gursky et al. 2010, Robinson 2010). The chil-
dren’s accounts in the present study affirm the importance
of communication between all those involved. Cline et al.
(2006) identified communication as an important aspect of
the preparation prior to medical procedures, and Hull and
Clark (2010) emphasised the importance of placing addi-
tional focus on the manner in which communication is
implemented, instead of merely on what is communicated.
In cases where the parents had knowledge about the pro-
ceedings, children did not feel dependent on the informa-
tion provided by the healthcare staff and felt less stressed.
This finding is important and is confirmed by Gordon et al.
© 2014 John Wiley & Sons Ltd
1044 Journal of Clinical Nursing, 24, 1038–1047
V Vejzovic et al.
(2010) who suggest that the parents play an important role
as information providers and can ease the stress for chil-
dren experiencing various medical procedures. This is par-
ticularly true when children feel that they are obliged to
undergo procedures that they see as potentially unpleasant,
such as a colonoscopy. While all the children in the present
study agreed to the examination voluntarily, they all felt
that, in reality, they did not have a choice. The children
could not opt out of the colonoscopy, but they appreciated
options to choose between for the preparation. Previous
research has also shown that children want to participate in
their own care and that they value the ability to make
choices related to their care (Moules et al. 2010, Pelander
& Leino-Klipi 2010).
The study focus was placed on capturing the child’s per-
spective, which is an important perspective. The UN Con-
vention on the Rights of the Child (1989), which sets out
children’s rights, is based on the underlying concept of the
child as an autonomous individual. To be interviewed is an
important event in the child’s life, and interviews should
therefore be well prepared as well as individually adapted
(Korteslouma et al. 2003). The interviews varied in length,
which could perhaps be influenced by the subject’s age, but
no relationship between age and interview length could be
identified in these data; rather, the child’s way of express-
ing their experience was the determining factor. Further-
more, there was no relationship found between the child’s
age and his or her description of experiences, ability to
drink laxative, participation in preparations prior to the
colonoscopy or ability to discuss the procedure with friends
and family. Thus, further research focusing on the influence
of age on a child’s experience in preparation for an elective
colonoscopy for the first time is needed.
To increase the credibility of the study, all children were
interviewed by the same interviewer, who is a paediatric
nurse with extensive experience in conversing with children.
The interviewer’s intention was to attain an understanding
of the children’s accounts and to guide the children towards
talking about their experiences prior to colonoscopy, which
is necessary according to Mishler (1986). Dependability
and conformability are demonstrated by detailed descrip-
tions of all phases of the analysis process. Researchers with
different experiences were actively involved in the analysis
process to reduce subjectivity and to increase credibility.
Parts of this study’s results could be applicable to other
children who need to be prepared for other demanding
medical examinations.
Conclusion
The most important result was that children felt that col-
onoscopy was something they wanted to keep to them-
selves as ‘a private affair’. To enable children to cope
with the preparation for colonoscopy while maintaining
their personal integrity, they needed the support of both
their parents and the healthcare staff. The children appre-
ciated an active role in the preparatory steps and an
opportunity to choose between different options, if avail-
able.
Relevance to clinical practice
The children’s experiences recorded in this study can con-
tribute to a greater understanding of children’s needs prior
to a colonoscopy and may provide professional care staff
with the basis for future nursing assessments. Children
need to have access to individualised information and
instructions. This is because children have varying require-
ments and may not like to share their thoughts and needs
before the colonoscopy. The result also suggests that
ensuring that parents are informed can help support chil-
dren to minimise the negative experiences of the proce-
dure. Where possible, healthcare staff will need to adapt
the existing standard information to each individual child’s
requirements, in terms of any practical teaching materials,
for example film, pictures or other information. In this
way, they can stimulate children to ask their own ques-
tions.
Disclosure
The authors have confirmed that all authors meet the
ICMJE criteria for authorship credit (www.icmje.org/ethi-
cal_1author.html), as follows: (1) substantial contributions
to conception and design of, or acquisition of data or
analysis and interpretation of data, (2) drafting the article
or revising it critically for important intellectual content,
and (3) final approval of the version to be published.
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troenterology, Hepatology and Nutri-
tion (2005) Inflammatory bowel
disease in children and adolescents:
recommendation for diagnosis – The
Porto Criteria. Journal of Pediatric
Gastroenterology, Hepatology, and
Nutrition 41, 1–7.
Forsner M, Jansson L & Sorlie V (2005)
Being ill as narrated by children aged
11–18 years. Journal of Child Health
Care 9, 314–323.
Gordon BK, Jananiste T, Barlett K, Perin
M, Jackson A, Sandstrom A, Charles-
ton R & Sheehan S (2010) Child and
parental surveys about pre-hospitaliza-
tion information provision. Child:
Care, Health and Development 37,
727–733.
Gursky B, Kastler L & Lewis M (2010)
Psychosocial intervention on proce-
dure-related distress in children being
treated for laceration repair. Journal
of Developmental and Behavioral
Pediatrics 31, 214–222.
Haskard KB, DiMatteo MR & Heritage J
(2009) Affective and instrumental
communication in primary care inter-
actions: predicting the satisfaction of
nursing staff and patients. Health
Communication 24, 21–32.
Hildebrand H, Finkel Y, Grahnquist L,
Lindholm J, Ekbom A & Askling J
(2003) Changing pattern of paediat-
ric inflammatory bowel disease in
northern Stockholm 1990–2001.
GUT: An International Journal of
Gastroenterology and Hepatology 52,
1432–1434.
Holmbeck GN (2002) A developmental
perspective on adolescent health and
illness: an introduction to the special
issues. Journal of Pediatric Psychology
27, 409–416.
Hull K & Clark D (2010) Restraining chil-
dren for clinical procedures: a review
of the issues issues that continue to
challenge children’s nursing. British
Journal of Nursing 19, 346–350.
Jaaniste T, Hayes B & Von Baeyer CL
(2007) Effects of preparatory informa-
tion and distraction on children‘s cold-
pressor pain outcomes: a randomized
controlled trial. Behaviour Research
and Therapy 45, 2789–2799.
Korteslouma R-L, Hentinen M & Nikko-
nen M (2003) Conducting a qualita-
tive child interview: methodological
considerations. Journal of Advanced
Nursing 42, 434–441.
Kugathasan S, Judd RH, Hoffmann RG,
heikenen J, Telega G, Khan F,
Weisdorf-Schindele S, San Pablo WJr,
Perranult J, Park R, Yaffe M, Browen
C, Rivera-Bennett MT, Mohabi I,
Martinez A, Blank E, Werlin SL,
Rudolph CD, Binion DG, Wisconsin
Pediatric Inflammatory Bowel Disease
Alliance (2003) Epidemiologic and
clinical characteristics of children with
newly diagnosed inflammatory bowel
disease in Wisconsin: a statewide pop-
ulation-based study. The Journal of
Pediatrics 143, 525–531.
Li HCW & Lopez V (2007) Development
and validation of a short form of
the Chinese version of the state anxi-
ety scale for children. International
Journal of Nursing Studies 44, 566–
573.
Mahajan L, Wyllie R, Steffen R, Kay M, Kit-
aoka G, Dettorre J, Sarigol S & McCue
K (1998) The effects of a psychological
preparation program on anxiety in
children and adolescents undergoing
gastrointestinal endoscopy. Journal of
Pediatric Gastroenterology, Hepatolo-
gy, and Nutrition 27, 161–165.
Malaty HM, Fan X, Opekun AR, Thibo-
deaux C & Ferry GD (2010) Rising
incidence of inflammatory bowel dis-
ease among children: a 12-year study.
Journal of Pediatric Gastroenterology
and Nutrition 50, 27–31.
Malmborg P, Grahnquist L, Lindholm J,
Montgomery S & Hildebrant H
(2013) Increasing incidence of paediat-
ric inflammatory bowel disease in
Northern Stockholm county 2002–
2007. Journal of Pediatric Gastroen-
terology and Nutrition 57, 29–34.
Mishler EG (1986) Research Interviewing:
Context and Narrative. Harvard
University Press, Cambridge, MA.
Moules NJ, MacLeod MLP, Thirsk LM &
Hanlon N (2010) And then you’ll see
her in the grocery store: the working
relationships of public health nurses
and high-priority families in Northern
Canadian communities. Journal of
Pediatric Nursing 25, 327–334.
Pant C, Anderson MP, Deshpande A,
Grunow J, O’Connor JA, Philpott J &
Sferra T (2013) Trends in hospitaliza-
tions of children with inflammatory
bowel disease within the United States
from 2000 to 2009. Journal of Investi-
gative Medicine 61, 1036–1038.
Pelander T & Leino-Klipi H (2010) Chil-
dren’s best and worst experiences during
hospitalization. Scandinavian Journal of
Caring Sciences 24, 726–733.
Piaget J & Inhelder B (1969) The Psychol-
ogy of the Child. Basic books, New
York, NY.
Reigada LC, Bruzzese J-M, Benkov KJ,
Levy J, Waxman AR, Petkova E &
Warner CM (2011) Illness- specific
anxiety: implications for functioning
and utilization of medical services in
adolescents with inflammatory bowel
disease. Journal for Specialists in Pedi-
atric Nursing 16, 207–215.
Robinson S (2010) Children and young
people’s views of health professionals
in England. Journal of Child Health
Care 14, 310–326.
Sawczenko A & Sandhu BK (2003) Pre-
senting features of inflammatory
bowel disease in Great Britain and
Ireland. Archives of Disease in Child-
© 2014 John Wiley & Sons Ltd
1046 Journal of Clinical Nursing, 24, 1038–1047
V Vejzovic et al.
(2010) who suggest that the parents play an important role
as information providers and can ease the stress for chil-
dren experiencing various medical procedures. This is par-
ticularly true when children feel that they are obliged to
undergo procedures that they see as potentially unpleasant,
such as a colonoscopy. While all the children in the present
study agreed to the examination voluntarily, they all felt
that, in reality, they did not have a choice. The children
could not opt out of the colonoscopy, but they appreciated
options to choose between for the preparation. Previous
research has also shown that children want to participate in
their own care and that they value the ability to make
choices related to their care (Moules et al. 2010, Pelander
& Leino-Klipi 2010).
The study focus was placed on capturing the child’s per-
spective, which is an important perspective. The UN Con-
vention on the Rights of the Child (1989), which sets out
children’s rights, is based on the underlying concept of the
child as an autonomous individual. To be interviewed is an
important event in the child’s life, and interviews should
therefore be well prepared as well as individually adapted
(Korteslouma et al. 2003). The interviews varied in length,
which could perhaps be influenced by the subject’s age, but
no relationship between age and interview length could be
identified in these data; rather, the child’s way of express-
ing their experience was the determining factor. Further-
more, there was no relationship found between the child’s
age and his or her description of experiences, ability to
drink laxative, participation in preparations prior to the
colonoscopy or ability to discuss the procedure with friends
and family. Thus, further research focusing on the influence
of age on a child’s experience in preparation for an elective
colonoscopy for the first time is needed.
To increase the credibility of the study, all children were
interviewed by the same interviewer, who is a paediatric
nurse with extensive experience in conversing with children.
The interviewer’s intention was to attain an understanding
of the children’s accounts and to guide the children towards
talking about their experiences prior to colonoscopy, which
is necessary according to Mishler (1986). Dependability
and conformability are demonstrated by detailed descrip-
tions of all phases of the analysis process. Researchers with
different experiences were actively involved in the analysis
process to reduce subjectivity and to increase credibility.
Parts of this study’s results could be applicable to other
children who need to be prepared for other demanding
medical examinations.
Conclusion
The most important result was that children felt that col-
onoscopy was something they wanted to keep to them-
selves as ‘a private affair’. To enable children to cope
with the preparation for colonoscopy while maintaining
their personal integrity, they needed the support of both
their parents and the healthcare staff. The children appre-
ciated an active role in the preparatory steps and an
opportunity to choose between different options, if avail-
able.
Relevance to clinical practice
The children’s experiences recorded in this study can con-
tribute to a greater understanding of children’s needs prior
to a colonoscopy and may provide professional care staff
with the basis for future nursing assessments. Children
need to have access to individualised information and
instructions. This is because children have varying require-
ments and may not like to share their thoughts and needs
before the colonoscopy. The result also suggests that
ensuring that parents are informed can help support chil-
dren to minimise the negative experiences of the proce-
dure. Where possible, healthcare staff will need to adapt
the existing standard information to each individual child’s
requirements, in terms of any practical teaching materials,
for example film, pictures or other information. In this
way, they can stimulate children to ask their own ques-
tions.
Disclosure
The authors have confirmed that all authors meet the
ICMJE criteria for authorship credit (www.icmje.org/ethi-
cal_1author.html), as follows: (1) substantial contributions
to conception and design of, or acquisition of data or
analysis and interpretation of data, (2) drafting the article
or revising it critically for important intellectual content,
and (3) final approval of the version to be published.
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parental surveys about pre-hospitaliza-
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actions: predicting the satisfaction of
nursing staff and patients. Health
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Hildebrand H, Finkel Y, Grahnquist L,
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(2003) Changing pattern of paediat-
ric inflammatory bowel disease in
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GUT: An International Journal of
Gastroenterology and Hepatology 52,
1432–1434.
Holmbeck GN (2002) A developmental
perspective on adolescent health and
illness: an introduction to the special
issues. Journal of Pediatric Psychology
27, 409–416.
Hull K & Clark D (2010) Restraining chil-
dren for clinical procedures: a review
of the issues issues that continue to
challenge children’s nursing. British
Journal of Nursing 19, 346–350.
Jaaniste T, Hayes B & Von Baeyer CL
(2007) Effects of preparatory informa-
tion and distraction on children‘s cold-
pressor pain outcomes: a randomized
controlled trial. Behaviour Research
and Therapy 45, 2789–2799.
Korteslouma R-L, Hentinen M & Nikko-
nen M (2003) Conducting a qualita-
tive child interview: methodological
considerations. Journal of Advanced
Nursing 42, 434–441.
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C, Rivera-Bennett MT, Mohabi I,
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Alliance (2003) Epidemiologic and
clinical characteristics of children with
newly diagnosed inflammatory bowel
disease in Wisconsin: a statewide pop-
ulation-based study. The Journal of
Pediatrics 143, 525–531.
Li HCW & Lopez V (2007) Development
and validation of a short form of
the Chinese version of the state anxi-
ety scale for children. International
Journal of Nursing Studies 44, 566–
573.
Mahajan L, Wyllie R, Steffen R, Kay M, Kit-
aoka G, Dettorre J, Sarigol S & McCue
K (1998) The effects of a psychological
preparation program on anxiety in
children and adolescents undergoing
gastrointestinal endoscopy. Journal of
Pediatric Gastroenterology, Hepatolo-
gy, and Nutrition 27, 161–165.
Malaty HM, Fan X, Opekun AR, Thibo-
deaux C & Ferry GD (2010) Rising
incidence of inflammatory bowel dis-
ease among children: a 12-year study.
Journal of Pediatric Gastroenterology
and Nutrition 50, 27–31.
Malmborg P, Grahnquist L, Lindholm J,
Montgomery S & Hildebrant H
(2013) Increasing incidence of paediat-
ric inflammatory bowel disease in
Northern Stockholm county 2002–
2007. Journal of Pediatric Gastroen-
terology and Nutrition 57, 29–34.
Mishler EG (1986) Research Interviewing:
Context and Narrative. Harvard
University Press, Cambridge, MA.
Moules NJ, MacLeod MLP, Thirsk LM &
Hanlon N (2010) And then you’ll see
her in the grocery store: the working
relationships of public health nurses
and high-priority families in Northern
Canadian communities. Journal of
Pediatric Nursing 25, 327–334.
Pant C, Anderson MP, Deshpande A,
Grunow J, O’Connor JA, Philpott J &
Sferra T (2013) Trends in hospitaliza-
tions of children with inflammatory
bowel disease within the United States
from 2000 to 2009. Journal of Investi-
gative Medicine 61, 1036–1038.
Pelander T & Leino-Klipi H (2010) Chil-
dren’s best and worst experiences during
hospitalization. Scandinavian Journal of
Caring Sciences 24, 726–733.
Piaget J & Inhelder B (1969) The Psychol-
ogy of the Child. Basic books, New
York, NY.
Reigada LC, Bruzzese J-M, Benkov KJ,
Levy J, Waxman AR, Petkova E &
Warner CM (2011) Illness- specific
anxiety: implications for functioning
and utilization of medical services in
adolescents with inflammatory bowel
disease. Journal for Specialists in Pedi-
atric Nursing 16, 207–215.
Robinson S (2010) Children and young
people’s views of health professionals
in England. Journal of Child Health
Care 14, 310–326.
Sawczenko A & Sandhu BK (2003) Pre-
senting features of inflammatory
bowel disease in Great Britain and
Ireland. Archives of Disease in Child-
© 2014 John Wiley & Sons Ltd
1046 Journal of Clinical Nursing, 24, 1038–1047
V Vejzovic et al.
hood 88, 995–1000. doi:10.1136/adc.
88.11.995
Sawczenko A, Sandhu BK, Logan RFA, jan-
kins H, Taylor CJ, Mian S & Lynn R
(2001) Prospective survey of child-
hood inflammatory bowel disease
in the British Isles. Lancet 357, 1093–
1094.
Tanaka K, Oikawa N, Terao R, Neqishi
Y, Fujii T, Kudo T & Shimizu T
(2011) Evaluations of psychological
preparation for children undergoing
endoscopy. Journal of Pediatric
Gastroenterology and Nutrition 52,
227–229.
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endoscopy. Gastrointestinal Endos-
copy Clinics of North America 11,
603–639.
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LA, Kao D, Kroeker K, Claggett B,
Saltzman JR, Wine E, Ferdorak RN &
Liu JJ (2012) Increased epithelial gaps
in the small intestine are predictive of
hospitalization and surgery in patients
with inflammatory bowel disease.
Clinical and Translational Gastroen-
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matory Bowel Diseases 12, 677–683.
The Journal of Clinical Nursing (JCN) is an international, peer reviewed journal that aims to promote a high standard of
clinically related scholarship which supports the practice and discipline of nursing.
For further information and full author guidelines, please visit JCN on the Wiley Online Library website: http://
wileyonlinelibrary.com/journal/jocn
Reasons to submit your paper to JCN:High-impact forum: one of the world’s most cited nursing journals, with an impact factor of 1�316 – ranked 21/101
(Nursing (Social Science)) and 25/103 Nursing (Science) in the 2012 Journal Citation Reports� (Thomson Reuters,
2012).
One of the most read nursing journals in the world: over 1�9 million full text accesses in 2011 and accessible in over
8000 libraries worldwide (including over 3500 in developing countries with free or low cost access).
Early View: fully citable online publication ahead of inclusion in an issue.
Fast and easy online submission: online submission at http://mc.manuscriptcentral.com/jcnur.
Positive publishing experience: rapid double-blind peer review with constructive feedback.
Online Open: the option to make your article freely and openly accessible to non-subscribers upon publication in Wiley
Online Library, as well as the option to deposit the article in your preferred archive.
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1038–1047 1047
Original article Experience of Swedish children
hood 88, 995–1000. doi:10.1136/adc.
88.11.995
Sawczenko A, Sandhu BK, Logan RFA, jan-
kins H, Taylor CJ, Mian S & Lynn R
(2001) Prospective survey of child-
hood inflammatory bowel disease
in the British Isles. Lancet 357, 1093–
1094.
Tanaka K, Oikawa N, Terao R, Neqishi
Y, Fujii T, Kudo T & Shimizu T
(2011) Evaluations of psychological
preparation for children undergoing
endoscopy. Journal of Pediatric
Gastroenterology and Nutrition 52,
227–229.
Thomson M (2001) Colonoscopy and
endoscopy. Gastrointestinal Endos-
copy Clinics of North America 11,
603–639.
Turcotte JF, Wong K, Mah SJ, Dielemon
LA, Kao D, Kroeker K, Claggett B,
Saltzman JR, Wine E, Ferdorak RN &
Liu JJ (2012) Increased epithelial gaps
in the small intestine are predictive of
hospitalization and surgery in patients
with inflammatory bowel disease.
Clinical and Translational Gastroen-
terology 26, 1–6.
Turner D, Lavine A, Weiss B, Hirsh A &
Shamir R (2010) Evidence-based rec-
ommendations for bowel cleansing
before colonoscopy in children: a rap-
port from a national working group.
Endoscopy 42, 1063–1070.
Turunen P, Kolho KL, Auvinen A, IItanen S,
Huhtala H & Ashorn M (2006) Inci-
dence of inflammatory bowel disease in
Finnish children, 1987–2003. Inflam-
matory Bowel Diseases 12, 677–683.
The Journal of Clinical Nursing (JCN) is an international, peer reviewed journal that aims to promote a high standard of
clinically related scholarship which supports the practice and discipline of nursing.
For further information and full author guidelines, please visit JCN on the Wiley Online Library website: http://
wileyonlinelibrary.com/journal/jocn
Reasons to submit your paper to JCN:High-impact forum: one of the world’s most cited nursing journals, with an impact factor of 1�316 – ranked 21/101
(Nursing (Social Science)) and 25/103 Nursing (Science) in the 2012 Journal Citation Reports� (Thomson Reuters,
2012).
One of the most read nursing journals in the world: over 1�9 million full text accesses in 2011 and accessible in over
8000 libraries worldwide (including over 3500 in developing countries with free or low cost access).
Early View: fully citable online publication ahead of inclusion in an issue.
Fast and easy online submission: online submission at http://mc.manuscriptcentral.com/jcnur.
Positive publishing experience: rapid double-blind peer review with constructive feedback.
Online Open: the option to make your article freely and openly accessible to non-subscribers upon publication in Wiley
Online Library, as well as the option to deposit the article in your preferred archive.
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1038–1047 1047
Original article Experience of Swedish children
OR I G I NA L ART I C L E
Parents’ experiences when their child is undergoing anelective colonoscopyVedrana Vejzovic, Ann-Cathrine Bramhagen, Ewa Idvall, and AnneWennick
Vedrana Vejzovic, RN, RSCN,MSc, is a Doctoral Student, Department of Care Science, Faculty of Health and Society, Malmö University; Ann-Cathrine
Bramhagen, RN, RSCN, PhD, is a Senior Lecturer, Department of Care Science, Faculty of Health and Society, Malmö University, and a Clinical Lecturer,
Skåne University Hospital; Ewa Idvall, RN, PhD, is a Professor, Department of Care Science, Faculty of Health and Society, Malmö University, and a Clinical
Professor, Department of Intensive Care and PerioperativeMedicine, Skåne University Hospital; and AnneWennick, RN, RSCN, PhD, is a Senior Lecturer,
Department of Care Science, Faculty of Health and Society, Malmö University, Malmö, Sweden
Search termsColonoscopy, parent, pediatric nursing,
qualitative research.
Author [email protected], with a copy to the
Editor: [email protected]
AcknowledgementNo external or intramural funding was received.
Disclosure: The authors report no actual or
potential conflicts of interest.
First Received November 19, 2014; Revision
received February 26, 2015; Accepted for
publication February 26, 2015.
doi: 10.1111/jspn.12109
Abstract
Purpose. The purpose was to illuminate parents’ experiences when theirchildren are undergoing an elective colonoscopy performed using polyeth-ylene glycol-based regimes for bowel preparation.Design and Methods. Individual interviews with 12 parents were per-formed and analysed using content analysis.Results. The parents’ experiences were structured into one theme:“Charged with conflicting emotions” with three categories: “Being forcedto force,” “Losing one’s sense of being a parent” and “Standing withoutguidance.”Practice Implications. Understanding parents’ experiences can helphealthcare staff guide parents in helping their children undergo acolonoscopy.
Colonoscopy is considered a safe and effectiveexamination and treatment of children, and is cur-rently the gold standard procedure for assessmentand evaluation of the colon. The number of childrenundergoing a colonoscopy to determine paediatricinflammatory bowel disease, chronic diarrhoea, andabdominal pain is increasing worldwide (Pant et al.,2013; Rabizadeh & Dubinsky, 2013).
Previous research with parents of children undergo-ing preoperative preparation has shown that parentsusually experience a lack of information or that theinformation supplied is not adapted to their individualneeds (Bray, Callery, & Kirk, 2012). Recent researchof parents who shared their experience of theirhospitalised child has, however, emphasised theimportance of information (Byczkowski, Munafo, &Britto, 2014; McGarry et al., 2014). Parents considerinformation as the most essential factor for being ableto cope with their children’s situations (Andersson,
Johansson, & Almerud Österberg, 2012). This is par-ticularly important because it is usually the parentswho provide their children with the required informa-tion about colonoscopy (Gordon et al., 2011; Vejzovic,Wennick, Idvall, & Bramhagen, 2014).
For a colonoscopy to be effective, a large volumeof laxative must be ingested over a relatively shortperiod of time, which is not always easy for the child(Elitsur, Butcher, Lund, & Elisur, 2013; Friedt &Welsch, 2013). In an interview study with childrenage 10–17 years, the children had difficulties ingest-ing large quantities of the bad-tasting fluid, regard-less of age (Vejzovic et al., 2014). Children alsoexpressed that they needed support from theirparents to cope with the bowel preparation as well asthe colonoscopy (Vejzovic et al., 2014).
Prior to a colonoscopy, a child must undergoseveral procedures to prepare for the examination,including cleansing the colon of faecal debris to
bs_bs_banner
Journal for Specialists in Pediatric Nursing
123Journal for Specialists in Pediatric Nursing 20 (2015) 123–130© 2015,Wiley Periodicals, Inc.
OR I G I NA L ART I C L E
Parents’ experiences when their child is undergoing anelective colonoscopyVedrana Vejzovic, Ann-Cathrine Bramhagen, Ewa Idvall, and AnneWennick
Vedrana Vejzovic, RN, RSCN,MSc, is a Doctoral Student, Department of Care Science, Faculty of Health and Society, Malmö University; Ann-Cathrine
Bramhagen, RN, RSCN, PhD, is a Senior Lecturer, Department of Care Science, Faculty of Health and Society, Malmö University, and a Clinical Lecturer,
Skåne University Hospital; Ewa Idvall, RN, PhD, is a Professor, Department of Care Science, Faculty of Health and Society, Malmö University, and a Clinical
Professor, Department of Intensive Care and PerioperativeMedicine, Skåne University Hospital; and AnneWennick, RN, RSCN, PhD, is a Senior Lecturer,
Department of Care Science, Faculty of Health and Society, Malmö University, Malmö, Sweden
Search termsColonoscopy, parent, pediatric nursing,
qualitative research.
Author [email protected], with a copy to the
Editor: [email protected]
AcknowledgementNo external or intramural funding was received.
Disclosure: The authors report no actual or
potential conflicts of interest.
First Received November 19, 2014; Revision
received February 26, 2015; Accepted for
publication February 26, 2015.
doi: 10.1111/jspn.12109
Abstract
Purpose. The purpose was to illuminate parents’ experiences when theirchildren are undergoing an elective colonoscopy performed using polyeth-ylene glycol-based regimes for bowel preparation.Design and Methods. Individual interviews with 12 parents were per-formed and analysed using content analysis.Results. The parents’ experiences were structured into one theme:“Charged with conflicting emotions” with three categories: “Being forcedto force,” “Losing one’s sense of being a parent” and “Standing withoutguidance.”Practice Implications. Understanding parents’ experiences can helphealthcare staff guide parents in helping their children undergo acolonoscopy.
Colonoscopy is considered a safe and effectiveexamination and treatment of children, and is cur-rently the gold standard procedure for assessmentand evaluation of the colon. The number of childrenundergoing a colonoscopy to determine paediatricinflammatory bowel disease, chronic diarrhoea, andabdominal pain is increasing worldwide (Pant et al.,2013; Rabizadeh & Dubinsky, 2013).
Previous research with parents of children undergo-ing preoperative preparation has shown that parentsusually experience a lack of information or that theinformation supplied is not adapted to their individualneeds (Bray, Callery, & Kirk, 2012). Recent researchof parents who shared their experience of theirhospitalised child has, however, emphasised theimportance of information (Byczkowski, Munafo, &Britto, 2014; McGarry et al., 2014). Parents considerinformation as the most essential factor for being ableto cope with their children’s situations (Andersson,
Johansson, & Almerud Österberg, 2012). This is par-ticularly important because it is usually the parentswho provide their children with the required informa-tion about colonoscopy (Gordon et al., 2011; Vejzovic,Wennick, Idvall, & Bramhagen, 2014).
For a colonoscopy to be effective, a large volumeof laxative must be ingested over a relatively shortperiod of time, which is not always easy for the child(Elitsur, Butcher, Lund, & Elisur, 2013; Friedt &Welsch, 2013). In an interview study with childrenage 10–17 years, the children had difficulties ingest-ing large quantities of the bad-tasting fluid, regard-less of age (Vejzovic et al., 2014). Children alsoexpressed that they needed support from theirparents to cope with the bowel preparation as well asthe colonoscopy (Vejzovic et al., 2014).
Prior to a colonoscopy, a child must undergoseveral procedures to prepare for the examination,including cleansing the colon of faecal debris to
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Journal for Specialists in Pediatric Nursing
123Journal for Specialists in Pediatric Nursing 20 (2015) 123–130© 2015,Wiley Periodicals, Inc.
ensure adequate visualisation (Elitsur et al., 2013;Turcotte et al., 2012). The bowel can be preparedwith several different regimens, but polyethyleneglycol (PEG) has been recommended as first line forpaediatric bowel preparation for many years (Friedt& Welsch, 2013; Millar, Rode, Buchler, & Cywes,1988; Sondheimer, Sokol, Taylor, Silverman, &Zelasney, 1991). Colonoscopies in children areusually performed while the child is under generalanaesthesia. Thus, in addition to cleansing the colon,the preparatory procedure involves the insertion ofa peripheral venous catheter and preparation foradministration of general anaesthesia.
Previous research has shown that children need tobe psychologically well prepared before undergoingstressful medical procedures (Larsen, Heilmann,Johansen, & Adamsen, 2011; Pelander & Leino-Kilpi,2010). Proper psychological preparation of the childbefore a colonoscopy increases the child’s under-standing of the procedure and reduces stress on boththe child and parents (Tanaka et al., 2011). Parentalinvolvement is beneficial for a child’s well-being andquality of care, and therefore is an important factor inthe care of the hospitalised child (Coyne, 2013). Forexample, a study by Aein, Alhani, Mohammadi, andKazemnejad (2009) showed that parental presenceduring a child’s hospital stay reduced the child’s emo-tional stress and increased the child’s safety and coop-erativeness.
Parents are generally willing to assist in theirchild’s care and to support the child. However, toparticipate fully, they require supervision, support,and a clear explanation of what their role entails(Coyne, 2013), especially in situations in which theymay lose control (Andersson et al., 2012).
Children also have expressed their need for paren-tal support to cope with the bowel preparation aswell as the colonoscopy (Vejzovic et al., 2014).Parents have an important role in supporting theirchildren in difficult medical investigations, such as acolonoscopy, and therefore it is important to learnfrom their experiences. This was the reason for con-ducting the present study, with the aim of illuminat-ing parents’ experiences when their childrenundergo elective colonoscopy using a PEG-basedregime for bowel preparation.
METHODS
The study applied a qualitative descriptive designusing interviews for data collection and contentanalysis influenced by Burnard, Gill, Stewart,Treasure, and Chadwick (2008) for data analysis.
Participants
Data were obtained from 12 parents (11 mothers and1 father). Participants were 30–64 years old (Mdn =39); eight were Swedish, two were from other Euro-pean countries, and two were Asian. The family sizevaried from one to four children, and two participantswere living with the other biological parent. Threeparticipants were single parents, and seven wereliving with other partners. All parents had previousexperiences of paediatric care, and five had experi-ences of hospital paediatric care and anaesthesia.
Using criterion sampling (Patton, 2001), a total of 14parents of children undergoing a colonoscopy at a chil-dren’s university hospital in southern Sweden wereasked whether they wished to participate. Two parentsdeclined, and 12 were included. The inclusion criteriafor the study were parents with children younger than18 years who had undergone their first elective colo-noscopy performed using a PEG-based regimen andwho understood and spoke the Swedish language.
Ethical considerations
Ethical approval was granted by the Regional EthicalReview Board in Lund (Ref. No. 2012/ 186).
Data collection
The parents were given written and verbal informationabout the study by a paediatric nurse who wasinvolved in the children’s admissions to the hospital.The paediatric nurse was not involved in a child’spreparation but responsible for the registration of achild. The parents were also informed about the studydesign and that it would be conducted by the firstauthor, who was not involved in the children’s care.Prior to a child’s hospital discharge after colonoscopy,parents were asked whether they wished to participatein the study and informed that their responses wouldbe treated confidentially. Verbal informed consent wasobtained from those interested in participating, and atime and location for the interview, chosen by theparent, was scheduled. At the time of the interview,written informed consent was obtained. The parentswere informed that participation was voluntary andthat they could withdraw at any time without any con-sequences for their children.
Interviews
All interviews were conducted in 2013, 7–10 daysafter each child had undergone a colonoscopy. The
Parents’ ExperiencesWhen Their Child Is Undergoing an Elective Colonoscopy V. Vejzovic et al.
124 Journal for Specialists in Pediatric Nursing 20 (2015) 123–130© 2015,Wiley Periodicals, Inc.
interviews took place in the family’s home (n = 9) orin a secluded parlour at the hospital (n = 3). Theduration of the interviews varied from 17 to 52 min(Mdn = 33.39). Interviews started with an openingquestion allowing the parents to describe “thereason why the colonoscopy was performed,” fol-lowed by an open question about their “experienceswhen their child underwent a colonoscopy.”Follow-up questions such as “What do you mean?”,“Could you explain?”, “Could you tell me a bit moreabout that?”, “How did you feel when . . .?” and“What were you thinking about . . .?” were fre-quently asked throughout the interviews.
Data analysis
Data were analysed using content analysis (Burnardet al., 2008). First, the interviews were transcribed ver-
batim, and then read and re-read by three of fourauthors to ensure familiarity with the data. Second,the text was read again in search of sentences or wordsdescribing parents’ experiences with their childrenundergoing elective colonoscopies. These sentenceswere condensed into meaning units. Words thatdescribed parents’ experiences were abstracted, and allthe authors first separately and then together createdcodes that were sorted into one theme and three cat-egories (Figure 1). The co-authors coded the materialseparately but discussed and compared the materialjointly until consensus was reached.
FINDINGS
Parents’ experiences when their children wereundergoing elective colonoscopies performed using
Final coding framework Initial coding framework
Charged with conflicting emotions
Being forced to force
Losing one’s sense of being a parent
Standing without guidance
Difficulties assisting child to take the laxative
Could not take the child’s side
Could not show empathy
Concerned about the child’s symptoms
Lose control
In favour of colonoscopy
Involvement in bowel preparation
Colonoscopy in the hospital with experts
Responsibility for the bowel preparation
Without knowledge about colonoscopy
Without knowledge about hospital protocols
Need to plan
Feeling uncomfortable
Figure 1 AnOverview of the Final Coding
Framework.
V. Vejzovic et al. Parents’ ExperiencesWhen Their Child Is Undergoing an Elective Colonoscopy
125Journal for Specialists in Pediatric Nursing 20 (2015) 123–130© 2015,Wiley Periodicals, Inc.
ensure adequate visualisation (Elitsur et al., 2013;Turcotte et al., 2012). The bowel can be preparedwith several different regimens, but polyethyleneglycol (PEG) has been recommended as first line forpaediatric bowel preparation for many years (Friedt& Welsch, 2013; Millar, Rode, Buchler, & Cywes,1988; Sondheimer, Sokol, Taylor, Silverman, &Zelasney, 1991). Colonoscopies in children areusually performed while the child is under generalanaesthesia. Thus, in addition to cleansing the colon,the preparatory procedure involves the insertion ofa peripheral venous catheter and preparation foradministration of general anaesthesia.
Previous research has shown that children need tobe psychologically well prepared before undergoingstressful medical procedures (Larsen, Heilmann,Johansen, & Adamsen, 2011; Pelander & Leino-Kilpi,2010). Proper psychological preparation of the childbefore a colonoscopy increases the child’s under-standing of the procedure and reduces stress on boththe child and parents (Tanaka et al., 2011). Parentalinvolvement is beneficial for a child’s well-being andquality of care, and therefore is an important factor inthe care of the hospitalised child (Coyne, 2013). Forexample, a study by Aein, Alhani, Mohammadi, andKazemnejad (2009) showed that parental presenceduring a child’s hospital stay reduced the child’s emo-tional stress and increased the child’s safety and coop-erativeness.
Parents are generally willing to assist in theirchild’s care and to support the child. However, toparticipate fully, they require supervision, support,and a clear explanation of what their role entails(Coyne, 2013), especially in situations in which theymay lose control (Andersson et al., 2012).
Children also have expressed their need for paren-tal support to cope with the bowel preparation aswell as the colonoscopy (Vejzovic et al., 2014).Parents have an important role in supporting theirchildren in difficult medical investigations, such as acolonoscopy, and therefore it is important to learnfrom their experiences. This was the reason for con-ducting the present study, with the aim of illuminat-ing parents’ experiences when their childrenundergo elective colonoscopy using a PEG-basedregime for bowel preparation.
METHODS
The study applied a qualitative descriptive designusing interviews for data collection and contentanalysis influenced by Burnard, Gill, Stewart,Treasure, and Chadwick (2008) for data analysis.
Participants
Data were obtained from 12 parents (11 mothers and1 father). Participants were 30–64 years old (Mdn =39); eight were Swedish, two were from other Euro-pean countries, and two were Asian. The family sizevaried from one to four children, and two participantswere living with the other biological parent. Threeparticipants were single parents, and seven wereliving with other partners. All parents had previousexperiences of paediatric care, and five had experi-ences of hospital paediatric care and anaesthesia.
Using criterion sampling (Patton, 2001), a total of 14parents of children undergoing a colonoscopy at a chil-dren’s university hospital in southern Sweden wereasked whether they wished to participate. Two parentsdeclined, and 12 were included. The inclusion criteriafor the study were parents with children younger than18 years who had undergone their first elective colo-noscopy performed using a PEG-based regimen andwho understood and spoke the Swedish language.
Ethical considerations
Ethical approval was granted by the Regional EthicalReview Board in Lund (Ref. No. 2012/ 186).
Data collection
The parents were given written and verbal informationabout the study by a paediatric nurse who wasinvolved in the children’s admissions to the hospital.The paediatric nurse was not involved in a child’spreparation but responsible for the registration of achild. The parents were also informed about the studydesign and that it would be conducted by the firstauthor, who was not involved in the children’s care.Prior to a child’s hospital discharge after colonoscopy,parents were asked whether they wished to participatein the study and informed that their responses wouldbe treated confidentially. Verbal informed consent wasobtained from those interested in participating, and atime and location for the interview, chosen by theparent, was scheduled. At the time of the interview,written informed consent was obtained. The parentswere informed that participation was voluntary andthat they could withdraw at any time without any con-sequences for their children.
Interviews
All interviews were conducted in 2013, 7–10 daysafter each child had undergone a colonoscopy. The
Parents’ ExperiencesWhen Their Child Is Undergoing an Elective Colonoscopy V. Vejzovic et al.
124 Journal for Specialists in Pediatric Nursing 20 (2015) 123–130© 2015,Wiley Periodicals, Inc.
interviews took place in the family’s home (n = 9) orin a secluded parlour at the hospital (n = 3). Theduration of the interviews varied from 17 to 52 min(Mdn = 33.39). Interviews started with an openingquestion allowing the parents to describe “thereason why the colonoscopy was performed,” fol-lowed by an open question about their “experienceswhen their child underwent a colonoscopy.”Follow-up questions such as “What do you mean?”,“Could you explain?”, “Could you tell me a bit moreabout that?”, “How did you feel when . . .?” and“What were you thinking about . . .?” were fre-quently asked throughout the interviews.
Data analysis
Data were analysed using content analysis (Burnardet al., 2008). First, the interviews were transcribed ver-
batim, and then read and re-read by three of fourauthors to ensure familiarity with the data. Second,the text was read again in search of sentences or wordsdescribing parents’ experiences with their childrenundergoing elective colonoscopies. These sentenceswere condensed into meaning units. Words thatdescribed parents’ experiences were abstracted, and allthe authors first separately and then together createdcodes that were sorted into one theme and three cat-egories (Figure 1). The co-authors coded the materialseparately but discussed and compared the materialjointly until consensus was reached.
FINDINGS
Parents’ experiences when their children wereundergoing elective colonoscopies performed using
Final coding framework Initial coding framework
Charged with conflicting emotions
Being forced to force
Losing one’s sense of being a parent
Standing without guidance
Difficulties assisting child to take the laxative
Could not take the child’s side
Could not show empathy
Concerned about the child’s symptoms
Lose control
In favour of colonoscopy
Involvement in bowel preparation
Colonoscopy in the hospital with experts
Responsibility for the bowel preparation
Without knowledge about colonoscopy
Without knowledge about hospital protocols
Need to plan
Feeling uncomfortable
Figure 1 AnOverview of the Final Coding
Framework.
V. Vejzovic et al. Parents’ ExperiencesWhen Their Child Is Undergoing an Elective Colonoscopy
125Journal for Specialists in Pediatric Nursing 20 (2015) 123–130© 2015,Wiley Periodicals, Inc.
a PEG-based regime for bowel preparation wereidentified as belonging to one theme: “Charged withconflicting emotions”; and three categories: “Beingforced to force,” “Losing one’s sense of being aparent,” and “Standing without guidance.” The cat-egories are reinforced by quotes from parents whodescribed their experiences.
Charged with conflicting emotions
During the entire hospital stay, parents experienceda constant inner battle between feelings of hope andfeelings of despair. They hoped that nothing seriouswould be discovered, although that possibilityexisted and was constantly present. However, theyfelt despair, as there were too many unansweredquestions about the child’s condition, resulting in afeeling of being pressured. Therefore, they desiredanswers and a solution to their child’s state ofhealth. Additionally, they struggled with thethought of various serious diseases that might befound during the colonoscopy.
Simultaneously, they felt relieved that the colo-noscopy was performed under general anaesthesia,and therefore the child hopefully did not have a dif-ficult experience. Meanwhile, they experiencedincreased levels of anxiety as the time to begin theanaesthesia was approaching. Regardless of whetherthey were in the company of other relatives or not,they experienced being alone with their thoughtswhile waiting for the colonoscopy to be performed.Therefore, the parents experienced conflicting emo-tions regarding their involvement in their children’sbowel preparation prior to, as well as during, andafter the colonoscopies. Their wish to be at their chil-dren’s sides and to support them was in constantconflict with a feeling of standing without guidancewhile preparing prior to the colonoscopy, in whichthey had to force the child to undergo the bowelpreparation. The parents felt uncomfortable withthe responsibility they were given.
Being forced to force
The children showed no reluctance to undergo theircolonoscopies, which was a relief to their parents.However, this attitude changed as soon as the chil-dren started drinking the laxative. Although theparents understood the necessity to drink the laxa-tive for the bowel cleansing to succeed, they per-ceived it as a difficult task to have been assigned.Therefore, they felt forced to force their children todrink the laxative as they feared that the colonos-
copy would not be performed if the bowel was notclean, and they would risk having to go througheverything again. They felt that they could not taketheir children’s perspectives and had to overlooktheir requirements due to the responsibility for thebowel preparation to be performed correctly. “I feltreally mean . . . I felt like that . . . I don’t know, it wasprobably like seeing a photo of a parent who forcestheir child to drink poison and you know that it ispoisonous. I knew that it wasn’t poisonous, but shestill didn’t feel good from it at that time and forcingher to drink it was very difficult . . . and at the sametime you have to try” (IP 9).
The parents felt that they had to be strict towardstheir children instead of being empathic. “You haveto nag because it needs to go down and to show thatit needs to be done . . . so I had to be on her back allthe time: ‘now you have drunk . . . and rested a bit,now you need to take it again . . . the time is passingand soon there will be another litre . . . and another,’if she could decide herself then she would neverhave drunk it . . . you need to be with it all the time. . .” (IP 1).
Therefore, the parents needed to hide their ownfeelings to be able to force their children to undergothe preparation despite the children’s wishes. “. . .it felt like total child abuse . . . seeing him sittingwith tears running and drinking this salt water andrefilling with . . . it was awful . . . I tried to be thereand support and not like show myself and encour-aged him, it is going well, you are strong like . . . no Iprobably wouldn’t have done it one more time . . .so I wouldn’t have subjected him to it one moretime, I wouldn’t . . .” (IP 11). The parents empha-sised that although the situation forced them to putthe child’s feelings aside and force the child toproceed with the bowel preparation, it was neces-sary for the colonoscopy to be performed.
Losing one’s sense of being a parent
The parents expressed that it was important to beable to feel like a parent and to be with and for theirchildren. However, the bowel preparation impliedmany steps during the first day at the hospital, whichmeant having to “prioritise” these steps instead ofthe child’s feelings and needs. The parents, there-fore, experienced that it was impossible to be a sup-porting parent during the bowel preparation prior tothe colonoscopy. Instead, their role as a parent wastransformed into a parent who was unable to helphis/her children. Although they were happy withthe fact that they could be with their children, they
Parents’ ExperiencesWhen Their Child Is Undergoing an Elective Colonoscopy V. Vejzovic et al.
126 Journal for Specialists in Pediatric Nursing 20 (2015) 123–130© 2015,Wiley Periodicals, Inc.
felt that they had to act against the child rather thanjust to be with her or him. “I felt sorry for her, it wastough . . . I just wanted to be there to support her. . .” (IP 3).
Because their children experienced symptomsfrom the bowel preparation and were not feelingwell, the parents thought of the colonoscopy as anopportunity. They believed that a successful colo-noscopy could generate a diagnosis, and a correctdiagnosis could generate a correct treatment. “Herstomach has hurt for several years, on and off, soI was worried about her . . . getting a colono-scopy done was a little difficult but at the same timeI was happy that someone had believed us . . .”(IP 2).
Therefore, being enrolled at the hospital for thebowel preparation, which involved ingesting a largevolume of laxative, as opposed to taking it at home,was considered to be safe. “I thought it was brilliantthat I didn’t have to give her an enema at home andthat we were at the hospital. When you don’t have amedical background yourself, you feel safe becauseyou are around those who are competent . . .”(IP 6).
The parents trusted the healthcare staff andexpected to receive help from them during thechild’s hospitalisation, but instead they felt com-pelled to take on a role equivalent to the healthcarestaff. Whereas the parents stayed by the child’sbedside during the entire hospitalisation, the health-care staff only stayed with the child for a short timeto help the parents convince the child to drink thelaxative. While the healthcare staff was present,everything was under control, but as soon as theparent was left alone with the child, the childshowed unwillingness to drink the laxative, whichled to parents being compelled to act in a mannerwhich, as one parent expressed, aroused “strongfeelings of guilt afterwards” (IP 4). Another parentsaid: “They (the healthcare staff) were good but theydon’t know her and she didn’t say much when theywere there . . . when they left she just said no . . . shewanted to go home . . .” (IP 7).
The parents wanted to be with their children duringtheir hospitalisations as parents, but instead they expe-rienced that they lost their sense of being a parent.
Standing without guidance
The parents felt that it was important to have priorknowledge about each step of the investigation anda need for all the components to be planned ahead indetail. They experienced difficulties in assisting their
children because the information regarding the dif-ferent steps of the investigation continuouslychanged. Difficulties intensified due to their unfa-miliarity with the routines and environment at thehospital. “I knew that he was going to go, but didn’tknow where he was going to go . . . not whichdepartment . . . even though we understood that wewere going to go to the department where we willperform this . . . we weren’t told what it is called orwhere it is or . . .” (IP 5). This factor resulted inparents feeling that they did not receive the guid-ance they had expected, which in turn negativelyaffected the in-hospital stay experience. The sameparent continued: “. . . I didn’t know how it wasgoing to happen and that is also something I thinkabout . . . even that the information had been sent inthe notice to attend . . . I understand that everythingis personal with these things, but a form of outline. . . of what is happening . . . that is what I thoughtabout . . . during those entire two days . . . all thetime” (IP 5).
The parents experienced that the healthcare staffsuffered from time constraints. Therefore, becausethe parents did not share the healthcare staff’sknowledge about or experience of the colonoscopyor similar procedures, they experienced that the staffinformed them too quickly. This rushed informationcaused difficulties, as the parents needed to informtheir children about the procedures. The lack of clearinformation led to feelings of anxiety, as the parentsfelt that their children expected answers to theirquestions, which they were not confident in provid-ing. “He (the son) asked me all the time . . . I haven’tdone this . . . I didn’t know a lot . . . didn’t dare toanswer . . . I was scared that I would say the wrongthing . . .” (IP 10).
Another difficulty was that the provided informa-tion was not always accurate in terms of what wouldhappen next or when. This misinformation causedthe parents to feel uncertainty, reduced their trust inthe healthcare staff, and led to irritation. “I got irri-tated with the person who said the wrong thing, Ididn’t trust her then. We didn’t really believe theinformation which she came with later, we wantedto hear it from someone else . . .” (IP 8). Therefore,the importance of clear information provided by thehealthcare staff was emphasised.
These difficulties contributed to an experience ofbeing left alone at the child’s bedside. “If I am reallyhonest then it was terrible . . . you are lonely and sadwhen the doors close . . . didn’t have control . . .didn’t know what happens in there . . . didn’t knowwhat to expect . . . it was tough” (IP 12). The parents
V. Vejzovic et al. Parents’ ExperiencesWhen Their Child Is Undergoing an Elective Colonoscopy
127Journal for Specialists in Pediatric Nursing 20 (2015) 123–130© 2015,Wiley Periodicals, Inc.
a PEG-based regime for bowel preparation wereidentified as belonging to one theme: “Charged withconflicting emotions”; and three categories: “Beingforced to force,” “Losing one’s sense of being aparent,” and “Standing without guidance.” The cat-egories are reinforced by quotes from parents whodescribed their experiences.
Charged with conflicting emotions
During the entire hospital stay, parents experienceda constant inner battle between feelings of hope andfeelings of despair. They hoped that nothing seriouswould be discovered, although that possibilityexisted and was constantly present. However, theyfelt despair, as there were too many unansweredquestions about the child’s condition, resulting in afeeling of being pressured. Therefore, they desiredanswers and a solution to their child’s state ofhealth. Additionally, they struggled with thethought of various serious diseases that might befound during the colonoscopy.
Simultaneously, they felt relieved that the colo-noscopy was performed under general anaesthesia,and therefore the child hopefully did not have a dif-ficult experience. Meanwhile, they experiencedincreased levels of anxiety as the time to begin theanaesthesia was approaching. Regardless of whetherthey were in the company of other relatives or not,they experienced being alone with their thoughtswhile waiting for the colonoscopy to be performed.Therefore, the parents experienced conflicting emo-tions regarding their involvement in their children’sbowel preparation prior to, as well as during, andafter the colonoscopies. Their wish to be at their chil-dren’s sides and to support them was in constantconflict with a feeling of standing without guidancewhile preparing prior to the colonoscopy, in whichthey had to force the child to undergo the bowelpreparation. The parents felt uncomfortable withthe responsibility they were given.
Being forced to force
The children showed no reluctance to undergo theircolonoscopies, which was a relief to their parents.However, this attitude changed as soon as the chil-dren started drinking the laxative. Although theparents understood the necessity to drink the laxa-tive for the bowel cleansing to succeed, they per-ceived it as a difficult task to have been assigned.Therefore, they felt forced to force their children todrink the laxative as they feared that the colonos-
copy would not be performed if the bowel was notclean, and they would risk having to go througheverything again. They felt that they could not taketheir children’s perspectives and had to overlooktheir requirements due to the responsibility for thebowel preparation to be performed correctly. “I feltreally mean . . . I felt like that . . . I don’t know, it wasprobably like seeing a photo of a parent who forcestheir child to drink poison and you know that it ispoisonous. I knew that it wasn’t poisonous, but shestill didn’t feel good from it at that time and forcingher to drink it was very difficult . . . and at the sametime you have to try” (IP 9).
The parents felt that they had to be strict towardstheir children instead of being empathic. “You haveto nag because it needs to go down and to show thatit needs to be done . . . so I had to be on her back allthe time: ‘now you have drunk . . . and rested a bit,now you need to take it again . . . the time is passingand soon there will be another litre . . . and another,’if she could decide herself then she would neverhave drunk it . . . you need to be with it all the time. . .” (IP 1).
Therefore, the parents needed to hide their ownfeelings to be able to force their children to undergothe preparation despite the children’s wishes. “. . .it felt like total child abuse . . . seeing him sittingwith tears running and drinking this salt water andrefilling with . . . it was awful . . . I tried to be thereand support and not like show myself and encour-aged him, it is going well, you are strong like . . . no Iprobably wouldn’t have done it one more time . . .so I wouldn’t have subjected him to it one moretime, I wouldn’t . . .” (IP 11). The parents empha-sised that although the situation forced them to putthe child’s feelings aside and force the child toproceed with the bowel preparation, it was neces-sary for the colonoscopy to be performed.
Losing one’s sense of being a parent
The parents expressed that it was important to beable to feel like a parent and to be with and for theirchildren. However, the bowel preparation impliedmany steps during the first day at the hospital, whichmeant having to “prioritise” these steps instead ofthe child’s feelings and needs. The parents, there-fore, experienced that it was impossible to be a sup-porting parent during the bowel preparation prior tothe colonoscopy. Instead, their role as a parent wastransformed into a parent who was unable to helphis/her children. Although they were happy withthe fact that they could be with their children, they
Parents’ ExperiencesWhen Their Child Is Undergoing an Elective Colonoscopy V. Vejzovic et al.
126 Journal for Specialists in Pediatric Nursing 20 (2015) 123–130© 2015,Wiley Periodicals, Inc.
felt that they had to act against the child rather thanjust to be with her or him. “I felt sorry for her, it wastough . . . I just wanted to be there to support her. . .” (IP 3).
Because their children experienced symptomsfrom the bowel preparation and were not feelingwell, the parents thought of the colonoscopy as anopportunity. They believed that a successful colo-noscopy could generate a diagnosis, and a correctdiagnosis could generate a correct treatment. “Herstomach has hurt for several years, on and off, soI was worried about her . . . getting a colono-scopy done was a little difficult but at the same timeI was happy that someone had believed us . . .”(IP 2).
Therefore, being enrolled at the hospital for thebowel preparation, which involved ingesting a largevolume of laxative, as opposed to taking it at home,was considered to be safe. “I thought it was brilliantthat I didn’t have to give her an enema at home andthat we were at the hospital. When you don’t have amedical background yourself, you feel safe becauseyou are around those who are competent . . .”(IP 6).
The parents trusted the healthcare staff andexpected to receive help from them during thechild’s hospitalisation, but instead they felt com-pelled to take on a role equivalent to the healthcarestaff. Whereas the parents stayed by the child’sbedside during the entire hospitalisation, the health-care staff only stayed with the child for a short timeto help the parents convince the child to drink thelaxative. While the healthcare staff was present,everything was under control, but as soon as theparent was left alone with the child, the childshowed unwillingness to drink the laxative, whichled to parents being compelled to act in a mannerwhich, as one parent expressed, aroused “strongfeelings of guilt afterwards” (IP 4). Another parentsaid: “They (the healthcare staff) were good but theydon’t know her and she didn’t say much when theywere there . . . when they left she just said no . . . shewanted to go home . . .” (IP 7).
The parents wanted to be with their children duringtheir hospitalisations as parents, but instead they expe-rienced that they lost their sense of being a parent.
Standing without guidance
The parents felt that it was important to have priorknowledge about each step of the investigation anda need for all the components to be planned ahead indetail. They experienced difficulties in assisting their
children because the information regarding the dif-ferent steps of the investigation continuouslychanged. Difficulties intensified due to their unfa-miliarity with the routines and environment at thehospital. “I knew that he was going to go, but didn’tknow where he was going to go . . . not whichdepartment . . . even though we understood that wewere going to go to the department where we willperform this . . . we weren’t told what it is called orwhere it is or . . .” (IP 5). This factor resulted inparents feeling that they did not receive the guid-ance they had expected, which in turn negativelyaffected the in-hospital stay experience. The sameparent continued: “. . . I didn’t know how it wasgoing to happen and that is also something I thinkabout . . . even that the information had been sent inthe notice to attend . . . I understand that everythingis personal with these things, but a form of outline. . . of what is happening . . . that is what I thoughtabout . . . during those entire two days . . . all thetime” (IP 5).
The parents experienced that the healthcare staffsuffered from time constraints. Therefore, becausethe parents did not share the healthcare staff’sknowledge about or experience of the colonoscopyor similar procedures, they experienced that the staffinformed them too quickly. This rushed informationcaused difficulties, as the parents needed to informtheir children about the procedures. The lack of clearinformation led to feelings of anxiety, as the parentsfelt that their children expected answers to theirquestions, which they were not confident in provid-ing. “He (the son) asked me all the time . . . I haven’tdone this . . . I didn’t know a lot . . . didn’t dare toanswer . . . I was scared that I would say the wrongthing . . .” (IP 10).
Another difficulty was that the provided informa-tion was not always accurate in terms of what wouldhappen next or when. This misinformation causedthe parents to feel uncertainty, reduced their trust inthe healthcare staff, and led to irritation. “I got irri-tated with the person who said the wrong thing, Ididn’t trust her then. We didn’t really believe theinformation which she came with later, we wantedto hear it from someone else . . .” (IP 8). Therefore,the importance of clear information provided by thehealthcare staff was emphasised.
These difficulties contributed to an experience ofbeing left alone at the child’s bedside. “If I am reallyhonest then it was terrible . . . you are lonely and sadwhen the doors close . . . didn’t have control . . .didn’t know what happens in there . . . didn’t knowwhat to expect . . . it was tough” (IP 12). The parents
V. Vejzovic et al. Parents’ ExperiencesWhen Their Child Is Undergoing an Elective Colonoscopy
127Journal for Specialists in Pediatric Nursing 20 (2015) 123–130© 2015,Wiley Periodicals, Inc.
suggested that the healthcare staff show anincreased interest in spending time with the parentand child to support and educate them and to reas-sure the parent of their actions and statements to thechild.
DISCUSSION
This study shows that parents whose childrenundergo elective colonoscopies are charged withconflicting emotions and need guidance during theirchildren’s bowel preparations and the followingsteps in the preparations prior to a colonoscopy.Because colonoscopy is an investigation that causesdiscomfort to the child, parents felt uncomfortable inthe in-hospital-stay-role that was unexpectedlyassigned to them. Parents came to the hospital withthe belief that there would be assistance from thehealthcare staff, but they did not receive the assis-tance needed. Parents’ expectations came into con-flict with the actual situations, which may haveaffected their experiences of their children’sin-hospital stays for their colonoscopies. Parents feltresponsible for their children’s emotional well-beingand the responsibility for the bowel cleansing proce-dure prior to colonoscopy.
Previous research has also shown that parents feelresponsible for their children’s physical care and emo-tional welfare, and are willing to provide basic child-care but are reluctant to perform nursing care if itwould cause their children pain or discomfort (Power& Franck, 2008; Stuart & Melling, 2014). It is possiblethat the parents and the healthcare staff have differentperceptions whether the bowel preparation is consid-ered to be basic childcare or nursing care; therefore, it isimportant to clarify this perception. It is also possiblethat they have not discussed their mutual roles in thechild’s care during the preparations prior to the colo-noscopy, which may have contributed to the difficul-ties the parents experienced. Previous studies aboutfamily-centred care show that it is unclear if parentsand healthcare staff discuss their roles or care activitiesduring a child’s hospitalisation (Coyne, 2013; Stuart &Melling, 2014).
It is interesting that the parents, regardless of theirneed for help or support, did not ask the healthcarestaff for help. This factor is perhaps the reason whythe healthcare staff felt that there was no need toprovide them with any further help. However,parents may not always feel comfortable asking forhelp and particularly not if they think that thehealthcare staff expect them to be able to managethe situation. This lack of interaction may perhaps
also explain why the parents in our study experi-enced that the information provided by the health-care staff was insufficient for their individual needs.Previous research with healthcare staff has shownthat they believe that they are extremely sensitive tothe needs of the parents and their children ininforming about procedures (Lloyd, Urquhart,Heard, & Kroese, 2008), whereas studies withparents show that parents feel a lack of individualpreparation for childcare (Andersson et al., 2012;Bray et al., 2012; Chorney & Kain, 2010; Ford,Courtney-Pratt, & Fitzgerald, 2012). These factorsare even more important if a child needs to undergoa colonoscopy, which can be difficult for both thechild and the parents.
According to hospital policy, written informationabout colonoscopy and its preparation is usuallysent by mail to all children and their parents a fewdays before the scheduled procedure. Verbal infor-mation about all the details before and during colo-noscopy is usually given to all families. However,the fact that parents emphasised their lack of infor-mation and knowledge about the procedure priorto the elective colonoscopy may indicate that thisprotocol is not sufficient. Therefore, parents needfurther guidance so that they do not feel too greata responsibility for the child’s preparation for colo-noscopy. This factor is important because a childprefers to ask his or her parents about a colonos-copy, as he/she does not feel comfortable withasking questions to the healthcare staff (Vejzovicet al., 2014). Therefore, the healthcare staff activelyneed to ask parents about their needs as well astheir children’s needs. Additionally, children haverecounted that the presence of their parentsenables them to relax and helps them to diverttheir thoughts from the colonoscopy and supportsthem through the particularly difficult aspectsof the process, such as ingesting the laxative(Vejzovic et al., 2014). Therefore, if parents arecomfortable with the procedure, they will feel con-fident and they may support their children in abetter way.
The parents’ conflicting emotions based on lack ofguidance may have negatively influenced the chil-dren’s willingness to cooperate. Because the chil-dren were more cooperative if the healthcare staffwere present, more time with the healthcare staffmay have been desirable. This finding shows thatparents’ guidance needs to be designed in a way thatleads to clear roles in which parents can continue tobe parents in nursing situations and support theirchildren as parents.
Parents’ ExperiencesWhen Their Child Is Undergoing an Elective Colonoscopy V. Vejzovic et al.
128 Journal for Specialists in Pediatric Nursing 20 (2015) 123–130© 2015,Wiley Periodicals, Inc.
The parents in our study experienced the timeat the hospital as stressful and lonely, which isconsistent with a systematic literature review ofresearch on parent participation in the care ofhospitalised children (Power & Franck, 2008). Whenhealth professional staff realise that parents arestressed, they have an opportunity to try and under-stand the parents’ situations better. It is importantthat healthcare staff frequently take the time andmake contact with parents during hospitalisationand update parents throughout the planning andimplementation of procedures.
Scientific rigour
The analytical process was conducted both indepen-dently and jointly to meet the demands of trustwor-thiness. Although the intention was to interviewboth parents, only one father participated in thestudy. This result was mainly due to mothers beingpresent throughout their children’s in-hospitalstays, whereas fathers were more often present onlyduring some stages of their children’s preparations.This factor may have influenced the results becauseother studies indicate that mothers may show moreconcern regarding various medical procedures, suchas day surgery (Andersson et al., 2012; Scrimin,Haynes, Altoè, Bornstein, & Axia, 2009). To reducevariability in the research procedures, the firstauthor conducted all the interviews. Interview tran-scripts were not returned to respondents to deter-mine credibility. Therefore, to enhance the study’scredibility, the data analysis was performed indi-vidually by three of the authors, followed by fre-quent discussion of the categories (Lincoln & Guba,1985). The interviews were conducted after theparents had received a preliminary response to thecolonoscopy but before they were given a definitiveresult from the gastroenterologist. This timing mayalso have impacted the study results.
CONCLUSION
Parents experience conflicting emotions when theirchildren undergo elective colonoscopy. Addition-ally, they feel responsible to ensure their child com-plies with test requirements, which indicates thatthey need continuous guidance from healthcarestaff to feel like parents. Parents also need clear andspecific guidance about what is expected from themand the opportunity to receive training to feel securewith the procedure.
Howmight this information affectnursing practice?
This study may be an important step in future guid-ance of parents of children who need to undergo anelective colonoscopy. Because parents have con-flicting emotions, feel forced to force their childrento drink the laxative, feel like they lose their senseof being a parent, and feel like they are withoutguidance, healthcare staff need to better under-stand and guide parents through this procedure.The results indicate that the healthcare staff needtime to establish a relationship with parents beforethe child is admitted to the hospital. Our suggestionis that parents can meet healthcare professionalswho will be present during the child’s preparationat an information meeting a few days before theplanned examination to establish contact andprovide opportunities for questions and discussionon the parents’ role when their children undergo acolonoscopy. Therefore, an important step is to askparents what they and their children know aboutcolonoscopy and help them prepare fully for theprocedure. A dialogue between parents andhealthcare staff about their mutual roles is prefer-able to reduce parents’ anxiety and uncertainty.This relationship is considered to be importantbecause parents felt that it was easier to managethe child’s preparation when healthcare staff werepresent at the bedside. Parents’ needs when theirchildren undergo difficult medical procedures andstaff perceptions of parents’ needs require addi-tional research.
References
Aein, F., Alhani, F., Mohammadi, E., & Kazemnejad, A.(2009). Parental participation and mismanagement: Aqualitative study of child care in Iran. Nursing & HealthSciences, 11, 221–227. doi:10.1111/j.1442-2018.2009.00450.x
Andersson, L., Johansson, I., & Almerud Österberg, S.(2012). Parents’ experiences of their child’s firstanaesthetic in day surgery. British Journal of Nursing,21(20), 1204–1210. doi:10.12968/bjon.2012.21.20.1204
Bray, L., Callery, P., & Kirk, S. (2012). A qualitative studyof the pre-operative preparation of children, youngpeople and their parents for planned continencesurgery: Experiences and expectations. Journal of ClinicalNursing, 21, 1964–1973. doi:10.1111/j.13652702.2011.03996.x
Burnard, P., Gill, P., Stewart, K., Treasure, E., & Chadwick,B. (2008). Analysing and presenting qualitative data.
V. Vejzovic et al. Parents’ ExperiencesWhen Their Child Is Undergoing an Elective Colonoscopy
129Journal for Specialists in Pediatric Nursing 20 (2015) 123–130© 2015,Wiley Periodicals, Inc.
suggested that the healthcare staff show anincreased interest in spending time with the parentand child to support and educate them and to reas-sure the parent of their actions and statements to thechild.
DISCUSSION
This study shows that parents whose childrenundergo elective colonoscopies are charged withconflicting emotions and need guidance during theirchildren’s bowel preparations and the followingsteps in the preparations prior to a colonoscopy.Because colonoscopy is an investigation that causesdiscomfort to the child, parents felt uncomfortable inthe in-hospital-stay-role that was unexpectedlyassigned to them. Parents came to the hospital withthe belief that there would be assistance from thehealthcare staff, but they did not receive the assis-tance needed. Parents’ expectations came into con-flict with the actual situations, which may haveaffected their experiences of their children’sin-hospital stays for their colonoscopies. Parents feltresponsible for their children’s emotional well-beingand the responsibility for the bowel cleansing proce-dure prior to colonoscopy.
Previous research has also shown that parents feelresponsible for their children’s physical care and emo-tional welfare, and are willing to provide basic child-care but are reluctant to perform nursing care if itwould cause their children pain or discomfort (Power& Franck, 2008; Stuart & Melling, 2014). It is possiblethat the parents and the healthcare staff have differentperceptions whether the bowel preparation is consid-ered to be basic childcare or nursing care; therefore, it isimportant to clarify this perception. It is also possiblethat they have not discussed their mutual roles in thechild’s care during the preparations prior to the colo-noscopy, which may have contributed to the difficul-ties the parents experienced. Previous studies aboutfamily-centred care show that it is unclear if parentsand healthcare staff discuss their roles or care activitiesduring a child’s hospitalisation (Coyne, 2013; Stuart &Melling, 2014).
It is interesting that the parents, regardless of theirneed for help or support, did not ask the healthcarestaff for help. This factor is perhaps the reason whythe healthcare staff felt that there was no need toprovide them with any further help. However,parents may not always feel comfortable asking forhelp and particularly not if they think that thehealthcare staff expect them to be able to managethe situation. This lack of interaction may perhaps
also explain why the parents in our study experi-enced that the information provided by the health-care staff was insufficient for their individual needs.Previous research with healthcare staff has shownthat they believe that they are extremely sensitive tothe needs of the parents and their children ininforming about procedures (Lloyd, Urquhart,Heard, & Kroese, 2008), whereas studies withparents show that parents feel a lack of individualpreparation for childcare (Andersson et al., 2012;Bray et al., 2012; Chorney & Kain, 2010; Ford,Courtney-Pratt, & Fitzgerald, 2012). These factorsare even more important if a child needs to undergoa colonoscopy, which can be difficult for both thechild and the parents.
According to hospital policy, written informationabout colonoscopy and its preparation is usuallysent by mail to all children and their parents a fewdays before the scheduled procedure. Verbal infor-mation about all the details before and during colo-noscopy is usually given to all families. However,the fact that parents emphasised their lack of infor-mation and knowledge about the procedure priorto the elective colonoscopy may indicate that thisprotocol is not sufficient. Therefore, parents needfurther guidance so that they do not feel too greata responsibility for the child’s preparation for colo-noscopy. This factor is important because a childprefers to ask his or her parents about a colonos-copy, as he/she does not feel comfortable withasking questions to the healthcare staff (Vejzovicet al., 2014). Therefore, the healthcare staff activelyneed to ask parents about their needs as well astheir children’s needs. Additionally, children haverecounted that the presence of their parentsenables them to relax and helps them to diverttheir thoughts from the colonoscopy and supportsthem through the particularly difficult aspectsof the process, such as ingesting the laxative(Vejzovic et al., 2014). Therefore, if parents arecomfortable with the procedure, they will feel con-fident and they may support their children in abetter way.
The parents’ conflicting emotions based on lack ofguidance may have negatively influenced the chil-dren’s willingness to cooperate. Because the chil-dren were more cooperative if the healthcare staffwere present, more time with the healthcare staffmay have been desirable. This finding shows thatparents’ guidance needs to be designed in a way thatleads to clear roles in which parents can continue tobe parents in nursing situations and support theirchildren as parents.
Parents’ ExperiencesWhen Their Child Is Undergoing an Elective Colonoscopy V. Vejzovic et al.
128 Journal for Specialists in Pediatric Nursing 20 (2015) 123–130© 2015,Wiley Periodicals, Inc.
The parents in our study experienced the timeat the hospital as stressful and lonely, which isconsistent with a systematic literature review ofresearch on parent participation in the care ofhospitalised children (Power & Franck, 2008). Whenhealth professional staff realise that parents arestressed, they have an opportunity to try and under-stand the parents’ situations better. It is importantthat healthcare staff frequently take the time andmake contact with parents during hospitalisationand update parents throughout the planning andimplementation of procedures.
Scientific rigour
The analytical process was conducted both indepen-dently and jointly to meet the demands of trustwor-thiness. Although the intention was to interviewboth parents, only one father participated in thestudy. This result was mainly due to mothers beingpresent throughout their children’s in-hospitalstays, whereas fathers were more often present onlyduring some stages of their children’s preparations.This factor may have influenced the results becauseother studies indicate that mothers may show moreconcern regarding various medical procedures, suchas day surgery (Andersson et al., 2012; Scrimin,Haynes, Altoè, Bornstein, & Axia, 2009). To reducevariability in the research procedures, the firstauthor conducted all the interviews. Interview tran-scripts were not returned to respondents to deter-mine credibility. Therefore, to enhance the study’scredibility, the data analysis was performed indi-vidually by three of the authors, followed by fre-quent discussion of the categories (Lincoln & Guba,1985). The interviews were conducted after theparents had received a preliminary response to thecolonoscopy but before they were given a definitiveresult from the gastroenterologist. This timing mayalso have impacted the study results.
CONCLUSION
Parents experience conflicting emotions when theirchildren undergo elective colonoscopy. Addition-ally, they feel responsible to ensure their child com-plies with test requirements, which indicates thatthey need continuous guidance from healthcarestaff to feel like parents. Parents also need clear andspecific guidance about what is expected from themand the opportunity to receive training to feel securewith the procedure.
Howmight this information affectnursing practice?
This study may be an important step in future guid-ance of parents of children who need to undergo anelective colonoscopy. Because parents have con-flicting emotions, feel forced to force their childrento drink the laxative, feel like they lose their senseof being a parent, and feel like they are withoutguidance, healthcare staff need to better under-stand and guide parents through this procedure.The results indicate that the healthcare staff needtime to establish a relationship with parents beforethe child is admitted to the hospital. Our suggestionis that parents can meet healthcare professionalswho will be present during the child’s preparationat an information meeting a few days before theplanned examination to establish contact andprovide opportunities for questions and discussionon the parents’ role when their children undergo acolonoscopy. Therefore, an important step is to askparents what they and their children know aboutcolonoscopy and help them prepare fully for theprocedure. A dialogue between parents andhealthcare staff about their mutual roles is prefer-able to reduce parents’ anxiety and uncertainty.This relationship is considered to be importantbecause parents felt that it was easier to managethe child’s preparation when healthcare staff werepresent at the bedside. Parents’ needs when theirchildren undergo difficult medical procedures andstaff perceptions of parents’ needs require addi-tional research.
References
Aein, F., Alhani, F., Mohammadi, E., & Kazemnejad, A.(2009). Parental participation and mismanagement: Aqualitative study of child care in Iran. Nursing & HealthSciences, 11, 221–227. doi:10.1111/j.1442-2018.2009.00450.x
Andersson, L., Johansson, I., & Almerud Österberg, S.(2012). Parents’ experiences of their child’s firstanaesthetic in day surgery. British Journal of Nursing,21(20), 1204–1210. doi:10.12968/bjon.2012.21.20.1204
Bray, L., Callery, P., & Kirk, S. (2012). A qualitative studyof the pre-operative preparation of children, youngpeople and their parents for planned continencesurgery: Experiences and expectations. Journal of ClinicalNursing, 21, 1964–1973. doi:10.1111/j.13652702.2011.03996.x
Burnard, P., Gill, P., Stewart, K., Treasure, E., & Chadwick,B. (2008). Analysing and presenting qualitative data.
V. Vejzovic et al. Parents’ ExperiencesWhen Their Child Is Undergoing an Elective Colonoscopy
129Journal for Specialists in Pediatric Nursing 20 (2015) 123–130© 2015,Wiley Periodicals, Inc.
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Elitsur, R., Butcher, L., Lund, V., & Elisur, Y. (2013).Polyethylene glycol 3350 based colon cleaning protocol:2 d vs 4 d head to head comparison. World Journal ofGastrointestinal Endoscopy, 5(4), 165–168. doi:10.4253/wjge.v5.i4.165
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