VEDRANA VEJZOVIC
GOING THROUGH A
COLONOSCOPY AND LIVING
WITH INFLAMMATORY BOWEL
DISEASE
Children’s and parents’ experiences and evaluation of the
bowel cleansing quality prior to colonoscopy
MALMÖ UNIVERSIT Y HEAL TH AND SOCIET Y DOCT OR AL DISSERT A TION 20 1 6:5 VEDR AN A VEJZO VIC MALMÖ UNIVERSIT GOIN G THR OUGH A C OL ON OSC OPY AND LIVIN G WITH INFL AMMA T OR Y BO WEL DISEASE
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
VEDRANA VEJZOVIC
GOING THROUGH A
COLONOSCOPY AND LIVING
WITH INFLAMMATORY BOWEL
DISEASE
Children’s and parents’ experiences and evaluation of the bowel
cleansing quality prior to colonoscopy
This publication is also available at: www.mah.se/muep
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
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
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’
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
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.
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.
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
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.
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).
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).
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
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 forendoscopy (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
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 sodiumpicosulfate (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
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).
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.).
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
(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
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
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-family-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.
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)
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.
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
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.
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
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
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
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).
(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)
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
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
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.
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
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.
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.
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
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, whohad 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)
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 theexact 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
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).
ts fr om c hi ldr en’ s a nd p ar ent s’ re spo ns es re ga rd in g ac cep tab ili ty C hi ldr en n= 70 Par en ts n =69 V er y go od n (%) Go od n (%) Ba d n (%) V er y bad n (%) M ed ian p V er y go od n (%) Go od n (%) Ba d n (%) V er y bad n (%) Me di an p ? 0.001 0.001 0( 0.0) 0( 0.0) 8( 22.9) 27( 77.1) Ver y bad 0( 0.0) 0( 0.0) 9( 26.5) 25( 73.5) Ver y bad 3( 8.6) 25( 71.4) 7( 20.0) 0( 0.0) Ver y good 2( 5.7) 25( 71.4) 7( 20.0) 1( 2.9) G ood C hi ldr en n= 71 Par en ts n =69 V er y eas y Eas y D iff ic ult V er y dif fic ult Me di an P V er y eas y Eas y D iff ic ult V er y dif fic ult Me di an P ng 0.001 0.001 1( 2.9) 4( 11.4) 10( 28.6) 20( 57.1) Ver y diffic ult 1( 2.9) 4( 11.8) 7( 20.6) 22( 64.7) Ver y diffic ult 20( 55.6) 14( 38.9) 1( 2.8) 1( 2.8) Ver y ea sy 19( 54.3) 14( 40.0) 1( 2.9) 1( 2.9) Ea sy
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).
f ro m chi ldr ens ’s ubj ec tive re spon se sr eg ar din g to le ra bilit y of bow el c le ans ing m edi ci ne be fo re c ol onos cop y PEG n= 35 N aP ico n= 36 p N ot a t a ll n (%) A little n (%) M uch n (%) V er y m uch n(%) N ot a t a ll n (%) A little n (%) M uch n (%) V er y m uch n(%) lo at ed s to m ach 9 ( 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 es 0 (0.0) 3 ( 8.6) 8 ( 22.9) 24 ( 68.6) 0 ( 0.0) 6 ( 16.7) 15 ( 41.7) 15 ( 41.7) 0.028 m ach ac he 4 (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 omitin g 3 (8.6) 21 (60.0) 6 (17.1) 5( 14.3) 20( 55.6) 12 (33.3) 2 (5.6) 2 (5.6) 0.001 ach e 23 (65.7) 11 (31.4) 0 (0 .0) 1( 2.9) 30( 83.3) 3( 8 .3) 2 (5 .6 ) 1( 2.9) 0 142 ry 11 (31.4) 15 (42.9) 5 (14.3) 4 (11.4) 20( 57.1) 11( 31.4) 3 (8 .6) 1( 2.9) 0 022 ff ic ul ty s le epi ng 16 (45.7) 16 (45.7) 1(2 .9) 2 (5.7) 21( 61.8) 10 (29.4) 2(5 .9) 1( 2.9) 0 235 14 (40.0) 13 (37.1) 6 (17.1) 2( 5.7) 26( 72 .2 ) 8 (22.2) 1( 2.8) 1( 2.8) 0 005 len e gl yc ol; N aP ico = s odi um pi cos ul ph at e n g roups
