Going trough a colonoscopy and living with inflammatory bowel disease : children's and parents' experiences and evaluation of the bowel cleansing quality prior to colonoscopy

Abstract: This thesis focuses on children aged 10-18 years with symptoms of, ordiagnosed 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 ofpaediatric IBD is increasing worldwide, which will augment the number ofpaediatric colonoscopies. When the recommended laxative polyethylene glycol(PEG) was used for bowel cleansing, the children and their accompanyingparents experienced the procedure as difficult due to the large volume of badtastingPEG. Once IBD is diagnosed, the children must undergo lifelongmedical treatment, which entails several follow-up colonoscopies.Furthermore, IBD is a chronic illness with an unpredictable activity patternthat can have a negative impact on the children’s quality of life. One of theaims of this thesis was to explore a child/child’s perspective of going through acolonoscopy and child’s perspective of living with IBD. A further aim was toinvestigate whether sodium picosulphate (NaPico) can be used as an adequatealternative when the bowel is cleansed prior to colonoscopy in children.Three of the studies were interview studies (Papers I, II, & IV) with childrenand parents as participants. The data from 17 children and 12 parents (PapersI & II) was analysed using content analysis, and a phenomenologicalhermeneutic method was used when 7 children (Paper IV) were interviewed.The children’s experiences prior to colonoscopy (Paper I) were identified asbelonging to an overall theme, A private affair, which could be divided intofour categories: Preparing yourself, Mastering the situation, Reluctantlyparticipating, and Feeling emotional support. The result from the parents’ experiences when their child is undergoing an elective colonoscopy wasstructured into one theme, Charged with conflicting emotions, with threecategories: Being forced to force, Losing one’s sense of being a parent, andStanding without guidance (Paper II). The initial findings from these empirical studies undertaken served as apreparation for another study, aimed at comparing the quality of bowelcleansing using either PEG or sodium picosulphate (NaPico) in relation to thetolerability and acceptance of the laxatives among children and theiraccompanying parents (Paper III). This study was a randomised controlledtrial (RCT) that was conducted as an investigator-blinded study within theDepartment of Paediatrics at a university hospital in Sweden(www.clinicaltrials.gov, identifier NCT02009202). A total of 72 children wererandomly placed into one of two groups (PEG or NaPico). The Ottawa BowelPreparation Quality Scale (OBPQS) was used to evaluate the quality of thebowel cleansing. Two different questionnaires were used to evaluate both theacceptability and the tolerability of the laxatives. In total, 67 protocols wereanalysed according to the OBPQS. No significant difference in bowelcleansingquality was detected between the two groups. However, rates ofacceptability 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 ofIBD, an interview study with seven children was conducted. The meaning oftheir lived experience of IBD was interpreted as A daily struggle to adapt andto be perceived as normal. This interpretation was discussed in relation toIngmar 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 werereluctant to talk about their problems, including colonoscopy. However, theywere willing to share their experiences in order to help other children withsimilar problems, or in order to influence and improve paediatric care. Itemerged that both children and parents need to feel confident in their dealingswith healthcare professionals and to feel that healthcare professionals taketheir opinions seriously when preparing the child for colonoscopy. It is also important that the children have the opportunity to choose thebowel-cleansing protocol. NaPico can be recommended as the option forbowel cleansing in children aged 10 years and older. The meaning that can beextracted from the children’s experience of IBD is that they are struggling toadapt and to be perceived as normal. This is a conscious process entailing aconfrontation with various problems, such as ambitions and goals that arehard to achieve, due to reduced abilities resulting from the illness or from aninsufficiently adapted environment.