M A L M Ö U N I V E R S I T Y H E A LT H A N D S O C I E T Y D O C T O R A L D I S S E R TAT I O N 2 016 : 5
VEDR ANA 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
GOING THROUGH A COLONOSCOPY AND LIVING WITH
INFLAMMATORY BOWEL DISEASE
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
VEDR ANA VEJZOVIC
GOING THROUGH A
COLONOSCOPY AND LIVING
WITH INFL AMMATORY BOWEL
DISEASE
Children’s and parents’ experiences and evaluation of the bowel
cleansing quality prior to colonoscopy
Malmö University, 2016
Faculty 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
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 badtasting 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 bowelcleansing 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.
II.
III.
IV.
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.
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.
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.
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
ESPGHAN
FCC
GI
IBD
OBPQS
PEG
RCT
NaPico
UC
UNCRC
HRQoL
Crohn’s disease
IBD Working Group of the European Society for
Paediatric Gastroenterology, Hepatology and
Nutrition
Family-centered care
Gastrointestinal
Inflammatory bowel disease
Ottawa Bowel Preparation Quality Scale
Polyethylene glycol
Randomised controlled trial
Sodium picosulphate
Ulcerative colitis
United Nations Convention on the Right of the
Child
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 (MathusVliegen et al. 2013). The recommended intake of PEG is 25-35 ml/kg bodyweight 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 (1116 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 & LeinoKilpi 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 familycentred 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 investigatorblinded 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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28
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
To
To
the
To describe the lived
bowel
experiences of IBD in
illuminate
illuminate
compare
children’s
parents’ experiences
quality
experiences prior to
when their children
cleansing
colonoscopy.
are undergoing an
either polyethylene
elective
glycol
or
sodium
colonoscopy
picosulfate
in
performed
using
of
relation
using
to
children.
the
polyethylene glycol-
tolerability
and
based regimes for
acceptance of these
bowel preparation.
laxatives
among
children and their
caregivers.
Participants
n=17 children
n=12 parents
n=71 children
n=7 children
n=71 parents
Data collection
Time
for
Individual
data
Individual
Individual interviews
interviews
interviews
controlled trial
2012
2013
November 2012 -
Qualitative content
Qualitative content
Descriptive
analysis
analysis
statistics;
Mann-
Whitney
test;
collection
Data analysis
Randomised
2015
June 2014
Power;
Phenomenological
hermeneutics
Kappa
statistic
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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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30
Table 2 Gender, age, and reason for colonoscopy
PEG
NaPico
n=35
n=36
Gender
Boys
17(47.2)
19(52.8)
N(%)
Girls
18(51.4)
17(48.6)
15.29(1.88)
14.64(2.40)
Known IBD
4(36.4)
7(63.6)
Suspected
31(51.7)
29(48.3)
Age mean
(SD)
Reason
for
colonoscopy
(%)
IBD
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 computergenerated 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
1. Being forced to force
laxative
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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37
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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39
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 preunderstanding, 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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41
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 badtasting 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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44
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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45
46
46
P= value
between groups
Sodium
picosulphat
n=36/35
How easy was
to drink the
bowel cleansing
medicine?
PEG n=35/34
Sodium
picosulphate
n=35/35
20(55.6) 14(38.9) 1(2.8)
1(2.8)
10(28.6) 20(57.1)
4(11.4)
1(2.9)
0(0.0)
27(77.1)
Difficult Very
difficult
25(71.4) 7(20.0)
8(22.9)
Children n= 71
Very
Easy
easy
3(8.6)
0(0.0)
Very
difficult
Very
easy
Median
Very
bad
Very
good
0.001
P
4(11.8)
1(2.9)
25(73.5)
Very
bad
n (%)
7(20.6)
1(2.9)
22(64.7)
Difficult Very
difficult
19(54.3) 14(40.0) 1(2.9)
1(2.9)
9(26.5)
n (%)
Bad
25(71.4) 7(20.0)
Parents n=69
Very
Easy
easy
2(5.7)
0(0.0)
0(0.0)
0(0.0)
How did the
bowel bowel
cleansing
medicine taste?
PEG n= 35/34
0.001
Parents n=69
Very
Good
good
n (%)
n (%)
Table 4 Results from children’s and parents’ responses regarding acceptability
Children n=70
Very
Good
Bad
Very
Median
p
good
bad
n (%)
n (%)
n (%)
n (%)
Very
difficult
Easy
Median
Very
bad
Good
Median
0.001
P
0.001
p
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).
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48
48
6 (17.1)
0 (0.0)
5 (14.3)
1(2.9)
6 (17.1)
21 (60.0)
23 (65.7) 11 (31.4)
11 (31.4) 15 (42.9)
16 (45.7) 16 (45.7)
14 (40.0) 13 (37.1)
3 (8.6)
4 (11.4) 16 (45.7)
12 (34.3)
8 (22.9)
0 (0.0)
3 (8.6)
9 (25.7)
9 (25.7) 12 (34.3)
PEG= polyethylene glycol; NaPico = sodium picosulphate
p= value between groups
Have I had a bloated stomach
n=68
Have I had faeces
n=71
Have I had a stomach ache
n= 71
Have I felt like vomiting
n=71
Have I had a headache
n=71
Have I felt worry
n=70
Have I had difficulty sleeping
n=69
Have I felt sad
n=71
2(5.7)
2 (5.7)
4 (11.4)
1(2.9)
5(14.3)
3 (8.6)
24 (68.6)
5 (14.3)
26(72.2)
21(61.8)
20(57.1)
30(83.3)
20(55.6)
6(16.7)
0 (0.0)
16 (48.5)
8 (22.2)
10 (29.4)
11(31.4)
3( 8.3)
12 (33.3)
19 (52.8)
6 (16.7)
12 (36.4)
1(2.8)
2(5.9)
3 (8.6)
2 (5.6)
2 (5.6)
9 (25.0)
15 (41.7)
3 (9.1)
Table 5 Results from childrens’ subjective responses regarding tolerability of bowel cleansing medicine before colonoscopy
PEG n=35
NaPico n=36
Not at all
A little
Much
Very much
Not at all
A little
Much
n (%)
n (%)
n (%)
n(%)
n (%)
n (%)
n (%)
1(2.8)
1(2.9)
1(2.9)
1(2.9)
2 (5.6)
2 (5.6)
15 (41.7)
5 (14.3)
Very much
n(%)
0 005
0 235
0 022
0 142
0.001
0.267
0.028
0.017
p
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)
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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 background yourself, you feel safe because you’re around those who are competent ...” (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
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50
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.
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0
1
2
3
4
5
6
7
8
9
10
11
12-14
Total score(TS)
Right Colon(RC)
Mid Colon(MC)
Recto- sigmoid
(RS)
PEG
n=34
1(2.9)
6(17.6)
6(17.6)
4(11.8)
7(20.6)
1(2.9)
5(14.7)
2(5.9)
1(2.9)
0(0.0)
1(2.9)
0(0.0)
0(0.0)
NaPico
n=33
2(6.1)
3(9.1)
0(0.0)
6(18.2)
7(21.2)
4(12.1)
1(3.0)
5(15.2)
2(6.1)
1(3.0)
1(3.0)
1(3.0)
0(0.0)
Excellent
Good
Fair
4(12.1) 12(36.4) 13(39.4)
7(21.2) 12(36.4) 12(36.4)
6(17.6) 10(30.3) 13(39.4)
Excellent
Good
Fair
11(32.4) 11(32.4) 10(29.4)
12(35.3) 16(47.1) 5(14.7)
6(17.6) 15(44.1) 10(29.4)
Poor
2(5.9)
1(2.9)
3(8.8)
NaPico n= 33
PEG n= 34
Table 6 Bowel cleansing according Ottawa Scale
Poor
4(12.1)
2(6.1)
4(12.1)
0.096
p
0.062
0.040
0.428
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
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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 always 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.
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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
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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
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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.
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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.
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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 selfreport 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.
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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
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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.
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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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REFERENCES
Abbas, M. I., Nylund, C. M., Bruch, C. J., et al. (2013). Prospective evaluation of 1-day
polyethylene glycol-3350 bowel preparation regimen in children. Journal of Pediatric
Gastroenterology and Nutrition, 56(2), 220-224.
Aein, F., Alhani, F., Mohammadi, E., & Kazemnejad, A. (2009). Parental participation and
mismanagement: A qualitative study of child care in Iran. Nursing & Health Sciences,
11, 221-227.
Alderson, P., & Morrow, V. (2011). The Ethic of Research with Children and Young
People: A Practical Handbook. (2 ed.) London: SAGE Publications.
nd
Altman, D. G. (1991). Practical statistics for Medical Research. (1 ed.) London: Chapman
& Hall.
st
Andersson, L., Johansson, I., & Almerud Österberg, S. (2012). Parents’ experiences of their
child’s first anaesthetic in day surgery. British Journal of Nursing, 21(20), 1204-1210.
Ashton, J. J., Wiskin, A. E., Ennis, S., Batra, A., Afzal, N. A., & Beattie, R. M. (2014).
Rising incidence of paediatric inflammatory bowel disease (PIBD) in Wessex, Southern
England. Archives of Disease in Childhood, 99, 659-664.
Beauchamp, T. L., & Childress, J. F. (2013). Principles of Biomedical Ethics. (7 ed.) New
York, NY: Oxford University Press.
th
Berntsson, L., Berg, M., Brydolf, M., & Hellström, A-L. (2007). Adolescents’ experiences
of well-being when living with a long-term illness or disability. Scandinavian Journal of
Caring Sciences, 21,419-425.
Björkman, B., Nilsson, S., Sigstedt, B., & Enskär, K. (2012). Children’s pain and distress
while undergoing an acute radiographic examination. Radiography, 18, 191-196.
Bramhagen, A. C., Triksson, M., Ericsson, E., Nilsson, I., Harden, S., & Idvall, E. (2016).
Self-reported post-operative recovery in children: development of an instrument. Journal
of Evaluation in Clinical Practice, 22, 180-188.
Bray, L., Callery, P., & Kirk, S. (2012). A qualitative study of the pre-operative preparation
of children, young people and their parents for planned continence surgery: Experiences
and expectations. Journal of Clinical Nursing, 21, 1964-1973.
76
76
Burnard, P. (1996).Teaching the analysis of textual data: an experiential approach. Nurse
Education Today, 16, 278-281.
Burnard, P., Gill, P., Stewart, K., Tresure, E., & Chadwick, B. (2008). Analysing and
presenting qualitative data. British Dental Journal, 204, 429-432.
Byczkowski, T. L., Munafo, J. K., & Britto, M. T. (2014). Family perceptions of the
usability and value of chronic disease web-based patient portals. Health Informatics
Journal, 20(2), 151-162.
Casati, J., Toner, B. B., de Rooy, E. C., Drossman, D. A., & Maunder, R. G. (2000).
Concerns of patients with inflammatory bowel disease: A review of emerging themes.
Digestive Diseases and Sciences, 45, 26-31.
Chorney, J. M., & Kain, Z. N. (2010). Family-centered pediatric perioperative care.
Anaesthesiology, 112(3), 751-755.
Christie, D., & Viner, R. (2005) ABC of adolescence: Adolescent development. British
Medical Journal, 330, 301-304.
Christensen, P., & James, A. (2008). Research with children: Perspectives and Practices.
(pp. 1-10). New York, NY: The Falmer Press.
Clarke, S. (2015). A Child’s Rights Perspective: The Right of Children and Young People to
Participate in Health Care Research. Issues in Comprehensive Pediatric Nursing, 38(3),
161-180.
Coyne, I. (2006). Children’s experiences of hospitalization. Journal of Child Health Care,
10(4), 326-336.
Coyne, I. (2008). Children’s participation in consultations and decision-making at health
service level: A review of the literature. International Journal of Nursing Studies, 45,
1682–1689.
Coyne, I., & Gallagher, P. (2011). Participation in communication and decision-making:
children and young people’s experiences in a hospital setting. Journal of Clinical
Nursing, 20, 2334-2343.
Coyne, I., & Kirwan, L. (2012). Ascertaining children’s wishes and feelings about hospital
life. Journal of Child Health Care, 16(3), 293-304.
Coyne, I. (2013). Families and health-care professionals’ perspectives and expectations of
family-centred care: Hidden expectations and unclear roles. Health Expectations: an
international journal of public participation in health care and health policy,
doi:10.1111/hex.12104 [Online publication].
Daniel, J. M. (2001). Young Adults’ Perceptions of Living with Chronic Inflammatory
Bowel Disease. Gastroenterology Nursing, 25(3), 83-94.
Denzin, N. K., & Lincoln, Y. S. (1994). Handbook of qualitative research. Thousand Oaks,
CA: Sage.
77
77
Devitt, J., McGreevy, K., Sherman, S., & Imperiale, T. F. (2008). Nurse-administered
propofol sedation compared with midazolam and meperidine for EUS: a prospective,
randomized trial. Gastrointestinal Endoscopy, 68, 499-509.
Di Nardo, G., Aloi, M., Cucchiara, S., Spada, C., Hassan, C., Civitelli, F., Nuti, F., Ziparo,
C., Pession, A., Lima, M., La Torre, G., & Oliva, S. (2014). Bowel preparations for
colonoscopy: an RCT. Pediatrics, 134(2), 249-256.
Dubinsky, M. (2008). Special issues in pediatric inflammatory bowel disease. World
Journal of Gastroenterology, 14(3), 413-420.
Eccleston, C., Fisher, E., Law, E., Barlett, J., & Palermo, T. M. (2015). Psychological
interventions for parents of children and adolescents with chronic illness. The Cochrane
Library, John Wiley & Sons.
El-Baba, M. F, Padilla, M., Houston, C., et al. (2006). A Prospective Study Comparing
Oral Sodium Phosphate Solution to a Bowel Cleansing Preparation with Nutrition Food
Package in Children. Journal of Pediatric Gastroenterology and Nutrition, 42(2), 174177.
Elitsur, R., Butcher, L., Lund, V., & Elitsur, Y. (2013). Polyethylene glycol 3350 based
colon cleaning protocol: 2 d vs 4 d head to head comparison. World Journal of
Gastrointestinal Endoscopy, 5(4), 165-168.
Engelmann, G., Erhard, D., Petersen, M., Parzer, P., Schlarb, A. A., Resch, F., Brunner, R.,
Hoffmann, G. F., Lenhartz, H., & Richterich, A. (2015). Health-related quality of life in
adolescents with inflammatory bowel disease depends on disease activity and psychiatric
comorbidity. Child psychiatry and human development, 46(2), 300-3007.
Engström, I. (1999). Inflammatory Bowel Disease in Children and Adolescents: Mental
Health and Family Functioning. Journal of Pediatric Gastroenterology and Nutrition,
28, 528-533.
ESPGHAN, European Society for Paediatric Gastroenterology, Hepatology and Nutrition.
(2005). IBD Working group inflammatory bowel disease in children and adolescents:
recommendations for diagnosis – the Porto criteria. Journal of Pediatric
Gastroenterology and Nutrition, 41(1), 1-7.
ESPGHAN/NSPGHAN, European Society for Paediatric Gastroenterology, Hepatology and
Nutrition, and North American Society for Pediatric Gastroenterology, Hepatology and
Nutrition. (2007). Differentiating Ulcerative Colitis from Crohn’s Disease in Children
and Young Adults: Report of a Working Group of the North American Society for
Pediatric Gastroenterolog, Hepatology, and Nutrition and the Crohn’s and Colitis
Foundation of America. Journal of Pediatric Gastroenterology and Nutrition, 44, 653674.
Fishman, L. N., Barendse, R. M., Hait, E., Burdick, C., & Arnold, J. (2010). SelfManagement of Older Adolescents with Inflammatory Bowel Disease: A Pilot Study of
Behaviour and Knowledge as Prelude to Transition. Clinical Pediatrics, 49(12), 11291233.
78
78
Ford, K., Courtney-Pratt, H., & Fitzgerald, M. (2012). Post-discharge experiences of
children and their families following children’s surgery. Journal of Child Health Care,
16(4), 320-330.
Friedt, M., & Welsch, S. (2013). An update on pediatric endoscopy. European Journal of
Medical Research, 18(1), 24.
Gordon, B. K., Jaaniste, T., Bartlett, K., Perrin, M., Jackson, A., Sandstrom, A., &
Sheehan, S. (2011). Child and parental surveys about pre-hospitalization information
provision. Child: Care, Health and Development, 37(5), 727-733.
Gray, W. N., Denson, L. A., Baldassano, R. N., & Hommel, K. A. (2011). Disease Activity,
Behavioural Dysfunction, and Health-related Quality of Life in Adolescents with
Inflammatory Bowel Disease. Inflammatory Bowel Diseases, 17(7), 1581-1586.
Gray, W. N., Graef, D. M., Schuman, S. S., Janicke, D. M., & Hommel, K. A. (2013).
Parenting stress in pediatric IBD: relations with child psychopathology, family
functioning, and disease severity. Journal of Developmental and Behavioral Pediatrics,
34(4), 237-244.
Greenley , R. N., Hommel, K. A., Nebel, K., Tara Rabaion, B. A., & Shun-Hwa Li, B. A.
(2010). Meta-analytic Review of the Psychosocial Adjustment of Youth with
Inflammatory Bowel Disease. Journal of Pediatric Psychology, 35(8), 857-869.
Guilfoyle, S. M., Gray, W. N., Herzer-Maddux, M., & Hommel, K. A. (2014). Parenting
stress predicts depressive symptoms in adolescents with inflammatory bowel disease.
European Journal of Gastroenterology and Hepatology, 26(9), 964-971.
Hagiwara, S-I., Nakayama, Y., Tagawa, M., Arai, K., Ishige, T., Murakoshi, T., Sekine, H.,
Abukawa, D., Yamada, H., Inoue, M., Saito, T., Kudo, T., & Seki, Y. (2015). Pediatric
Patient and Parental Anxiety and Impressions Related to Initial Gastrointestinal
Endoscopy: A Japanese Multicenter Questionnaire Study. Scientifica,
doi:10.1155/2015/797564. [Online publication].
Hassall, E., & Lobe, T. E. (2007). Risks of oral sodium phosphate for pre colonoscopy
bowel preparation in children. Gastrointestinal Endoscopy, 65(7), 1102-1105.
Heard, L., (2008). Taking care of the little things: preparation of the pediatric endoscopy
patient. Journal of Gastroenterology Nursing, 31 (2), 108-112.
Heuss, L. T., Froehlich, F., & Beglinger, C. (2005). Changing patterns of sedation and
monitoring practice during endoscopy: results of a nationwide survey in Switzerland.
Endoscopy, 37, 161-166.
Hildebrand, H., Finkel, Y., Granquist, L., Lindholm, J., Ekbom, A., & Askling, J. (2003).
Changing pattern of paediatric inflammatory bowel disease in northern Stockholm
1990-2001. Gut, 52(10), 1432-1434.
Hommel, K. A., Davis, C. N., & Baldassan, R. N. (2008). Medication adherence and
quality of life in pediatric inflammatory bowel disease. Journal of Pediatric Psychology,
33(8), 867-874.
79
79
Hommel, K. A., Denson, L. A., & Baldassano, R. N. (2011). Oral medication adherence
and disease severity in pediatric inflammatory bowel disease. European Journal of
Gastroenterology and Hepatology, 23, 250-254.
Kappelman, M. D., Rifas-Shiman, S. L., Kleinman, K., et al. (2007). The prevalence and
geographic distribution of Crohn’s disease and ulcerative colitis in the United States.
Clinic Gastroenterology and Hepatology, 5, 1424-1429.
Khour, H., Perreault, P., & Herzog, D. (2010). Patient Satisfaction With the service of a
Pediartric Digestive Tract Endoscopy Unit: Validation and Application of a
Questionnaire. Quality Management in Health Care, 19(1), 82-85.
Korteslouma, R.-L., Hentinen, M., & Nikkonen, M. (2003). Conducting a qualitative child
interview: methodological considerations. Journal of Advanced Nursing, 42, 434-441.
Kostman, E., & Nilsson, A. (2012). Children’s Perspectives of Health: What makes
Children Feel Good According to Themselves? International Journal of Education,
http://dx.doi.org/10.5296/ije.v4i1.914.
Kugathasan, S., Judd, R. H., Hoffmann, R. G., Heikenen, J., Telega, G., Khan, F.,
Weisdorf-Schindele, S., San Pablo, W. Jr., Perranult, J., Park, R., Yaffe, M., Browen, C.,
Rivera-Bennett, M. T., Mohabi, I., Martinez, A., Blank, E., Werlin, S. L., Rudolph, C.
D., & Binion, D. G. (2003). Epidemiologic and clinical characteristic of children with
newly diagnosed inflammatory bowel disease in Wisconsin: a state wide populationbased study. The Journal of Pediatrics, 143(4), 525-531.
Kuzel, A. J. (1999). Sampling in qualitative inquire. In B. F. Crabtree, & W. L. Miller
(Eds.), Doing qualitative research (2 ed., pp. 33–46). Thousand Oaks, CA: Sage.
nd
Kvale, S., & Brinkmann, S. (2009). Den kvalitativa forskningsintervjun. (2 ed.) Lund:
Studentlitteratur.
nd
Li, H. C. W., & Lopez, V. (2007). Development and validation of a short form of the
Chinese version of the state anxiety scale for children. International Journal of Nursing
Studies, 44, 566-573.
Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage
Publication.
Lindfred, H., Saalman, R., Nilsson, S., & Reichenberg, K. (2008). Inflammatory bowel
disease and self-esteem in adolescence. Acta Paediatrica, 97(2), 201-205.
Lindfred, H., Saalman, R., Nilsson, S., Sparud-Lundin, C., & Leep, M. (2012). Selfreported health, self-management, and the impact of living with inflammatory bowel
disease during adolescence. Journal of Pediatric Nursing, 27(3), 256-264.
Lindseth, A., & Norberg, A. (2004). A phenomenological hermeneutical method for
researching lived experience. Scandinavian Journal of Caring Science, 18, 145-153.
Lloyd, M., Urguhart, G., Heard, A., & Kroese, B. (2008). When a child says “no”:
Experiences of nurses working with children having invasive procedures. Paediatric
Nursing, 20(4), 29-34.
80
80
Loonen, H. J., Grootenhuis, M. A., Last, B. F., Koopman, H. M., & Derkx, H. H. (2002).
Quality of life in paediatric inflammatory bowel disease measured by a generic and a
disease-specific questionnaire. Acta Paediatrica, 91, 348-354.
Mackner, L. M., Sisson, D. P., & Crandall, W. V. (2004). Review: Psychosocial Issues in
Pediatric Inflammatory Bowel Disease. Journal of Pediatric Psychology, 29(4), 243-57.
Mackner, L. M., & Crandall, W. V. (2005). Oral medication adherence in pediatric
inflammatory bowel disease. Inflammatory Bowel Diseases, 11, 1006-1012.
Mackner, L. M., & Crandall, W. V. (2006). Brief report: psychosocial adjustment in
adolescents with inflammatory bowel disease. Journal of Pediatric Psychology, 31:281285.
Mackner, L. M., & Crandall, W. V. (2007). Psychological factors affecting pediatric
inflammatory bowel disease. Current Opinion in Pediatrics, 19, 548-552.
Mackner, L. M., Bickmeier, R. M., & Crandall, W. V. (2012). Academic achievement,
attendance, and school-related quality of life in pediatric inflammatory bowel disease.
Journal of Developmental and Behavioral Pediatrics, 33(2), 106-11.
Mahajan, R. J., Barthel, J. S., & Marshall, J. B. (1996). Appropriateness of referrals for
open-access endoscopy. How do physicians in different medical specialties do? Archives
of Internal Medicine, 14(156), 2065-2069.
Malaty, H. M., Fan, X., Opekun, A. R., Thibodeaux, C., & Ferry, G. D. (2010). Rising
incidence of inflammatory bowel disease among children: a 12-year study. Journal of
Pediatric Gastroenterology and Nutrition, 50(1), 27-31.
Malmborg, P., Grahnquist, L., Lindholm, J., Montgomery, S., & Hildebrand, H. (2013).
Increasing incidence of paediatric inflammatory bowel disease in northern Stockholm
County, 2002– 2007. Journal of Pediatric Gastroenterology and Nutrition, 57, 29-34.
Mamula, P., Markowitz, J. E., & Baldassano, R. N. (2003). Inflammatory bowel disease in
early childhood and adolescence: special considerations. Gastroenterology Clinic of
North America, 32(3), 967-995.
Mathus-Vliegen, E., Pellisé, M., Heresbach, D., Fischbach, W., Dixon, T., Belsey, J.,
Parente, F., Rio-Tinto, R., & Brown, A. (2013). Consensus guidelines for the use of
bowel preparation prior to colonic diagnostic procedures: colonoscopy and small bowel
video capsule endoscopy. Current Medical Research and Opinion, 29(8), 931-945.
McGarry, S., Elliott, C., McDonald, A., Valentine, J., Wood, F., & Girdler, S. (2014).
“This is not just a little accident”: A qualitative understanding of paediatric burns from
the perspective of parents. Disability and Rehabilitation, 37(1), 41-50.
McIntosh, N., Helms, P., & Smyth, R. (Eds.) (2003). Forfar and Arneil’s textbook of
paediatrics. (6 ed.) Edinburgh: Churchill Livingstone, 1757-1768.
th
Millar, A. J. W., Rode, H., Buchler, I., & Cywes, S. (1988). Whole-gut lavage in children
using an iso-osmolar solution containing polyethelene glycol (golytely). Journal of
Pediatric Surgery, 23(9), 822-824.
81
81
Mishler, E. G. (1991). Research Interviewing: Context and Narrative. Cambridge, MA:
Harvard University Press.
Mokkink, L. B., van der Lee, J. H., Grootenhuis, M., Offringa, M., & Heymans, H. D.,
(2008). Defining Chronic Diseases and Health Conditions in Childhood (0-18 years of
age): National Consensus in the Netherlands. European Journal of Pediatrics, 167(12),
1441-7.
Morse, J. M. (2000). Determining sample size. Qualitative Health Research, 10, 3-5.
Moules, N. J., MacLeod, M. L. P., Thirsk, L. M., & Hanlon, N. (2010). And then you’ll
see her in the grocery store: the working relationships of public health nurses and highpriority families in Northern Canadian communities. Journal of Pediatric Nursing, 25,
327-334.
Mueller, R., Ziade, F., Pittet, V., Fournier, R., Ezri, J., Schopfer, A., Schibli, S., Spalinger,
J., Braegger, C., & Nydegger, A. (2016). Quality of Life in Swiss Paediatric
Inflammatory Bowel Disease Patients: Do Patients and Their Parents Experience Disease
in the Same Way? Journal of Crohn’s Colitis, 10(3), 269-276.
Nicholas, D. B., Otley, A., Smith, C., Avolio, J., Munk, M., & Griffiths, A. M. (2007).
Challenges and strategies of children and adolescents with inflammatory bowel disease: a
qualitative examination. Health and Quality of Life Outcomes, doi: 10.1186/1477-75255-28 [Open access].
Nilsson, S., Hallqvist, C., Sidenvall, B., & Enskär, K. (2011). Children’s experiences of
procedural pain management in conjunction with trauma wound dressings. Journal of
Advanced Nursing, 67(7), 1449-1457.
Nilsson, S., Björkman, B., Almqvist, A. L., Almqvist, L., Björk-Willén, P., Donohue, D.,
Enskär, K., Granlund, M., Huus, K., & Hvit, S. (2015). Children's voices –
Differentiating a child perspective from a child's perspective. Developmental
Neurorehabilitation, 18(3):162-8.
Norling, M., Stenzelius, K., Ekman, N., & Wennick, A. (2015). High School Students’
Experiences in School Toilets or Restrooms. The Journal of School Nursing, pii:
1059840515611476. [Epub ahead of print].
Nyström, M., & Dahlberg, K. (2001). Pre-understanding and openness a relationship
without hope. Scandinavian Journal of Caring Science, 15, 339-346.
Okasha, S. (2002). Kort om vetenskapsfilosofi. Riga: Livonia Print.
Pall, H., Zacur, G. M., Kramer, R. E., et al. (2014). Bowel preparation for pediatric
colonoscopy: report of the NASPGHAN endoscopy and Procedures Committee. Journal
of Pediatric Gastroenterology and Nutrition, 59(3), 409-416.
82
82
Pant, C., Anderson, M. P., Deshpande, A., Grunow, J. E., O’Connor, J. A., Philpott, J. R.,
& Sferra, T. J. (2013). Trends in hospitalizations of children with inflammatory bowel
disease within the United States from 2000 to 2009. Journal of Investigative Medicine,
61(6), 1036-1038.
Patton, M. Q. (2002). Qualitative research and evaluation methods (2 ed.). Thousand
Oaks, CA: Sage Publications, Inc.
nd
Pelander, T., & Leino-Kilpi, H. (2009). Children’s best and worst experience during
hospitalisation. Scandinavian Journal of Caring Science, 24, 726-733.
Perminow, G., Brackmann, S., Lyckander, L. G., Franke, A., Borthne, A., Rydning, A.,
Aamodt, G., Schreiber, S., & Vatn, M. H. IBSEN II Group. (2009). A characterization in
childhood inflammatory bowel disease, a new population-based inception cohort from
South-Eastern Norway, 2005-07, showing increased incidence in Crohn’s disease.
Scandinavian Journal of Gastroenterology, 44, 446-56.
Plevinsky, J. M., Gumidyala, A. P., & Fishman, L. N. (2014). Transition experience of
young adults with inflammatory bowel diseases (IBD): a mixed methods study. Child:
care, health and development, 41(5), 755-761.
Polit, D. F., & Beck, C. T. (2013). Essentials of Nursing Research: Assessing Evidence for
Nursing Practice. Philadelphia: Wolters Kluwer Health/Lippincott Williams & Wilkins.
Power, N., & Franck, L. (2008). Parent participation in the care of hospitalized children: A
systematic review. Journal of Advanced Nursing, 62(6), 622-641.
Pörn, I. (1993). Health and Adaptedness. Theoretical Medicine, 14, 295-303.
Ravikoff, J. E., Cole, E. B., & Korzenik, J. R. (2012). Barriers to enrolment in
inflammatory bowel disease randomized controlled trials: an investigation of patient
perspectives. Inflammatory Bowel Disease, 18(11), 2092-2098.
Reigada, L. C., Bruzzese, J.-M., Benkov, K. J., Levy, J., Waxman, A. R., Petkova, E., &
Warner, C. M. (2011). Illness-specific anxiety: implications for functioning and
utilization of medical services in adolescents with inflammatory bowel disease. Journal
for Specialists in Pediatric Nursing, 16, 207-215.
Ricoeur, P. (1976). Interpretation theory: discourse and the surplus of meaning. Fort
Worth, TEX: Texas Christian University Press.
Robizadeh, S., & Dubinsky, M. (2013). Update in pediatric inflammatory bowel disease.
Rheumatic diseases clinics of North America, 39(4), 789-99.
Rocha, E. M., Marche, T. A., & von Baeyer, C. L. (2009). Anxiety influences children’s
memory for procedural pain. Pain Research & Management. The Journal of the
Canadian Pain Society, 14(3), 233-237.
Rosen, M. J., Dhawan, A., & Saeed, S. A. (2015). Inflammatory Bowel Disease in Children
and Adolescents. JAMA Pediatrics, 169(11), 1053-60.
Ross, S. C., Strachan, J., Russell, R. K., & Willson, S. L. (2011). Psychosocial functioning
and health-related quality of life in paediatric inflammatory bowel disease. Journal of
Pediatric Gastroenterology and Nutrition, 53(5), 480-8.
83
83
Rostom, A., & Jolicoeur, E. (2004). Validation of a new scale for the assessment of bowel
preparation quality. Gastrointestinal Endoscopy, 59(4), 482-486.
Runeson, I., Hallström, I., Elander, G., & Hermerén, G. (2002). Children’s participation in
decision-making process during hospitalisation: an observational study. Nursing Ethics,
9, 583-598.
Ryan, J. L., Mellon, M. W., Junger, K. W. F., Hente, E., Denson, L. A., Saeed, S. A., &
Hommel, K. A. (2013). The Clinical Utility of Health Quality of Life Screening in a
Pediatric Inflammatory Bowel Disease Clinic. Inflammatory Bowel Disease, 19(12),
2662-2672.
Salwen, W. A., & Basson, M. (2004). Effect of four-day psyllium supplementation on
bowel preparation for colonoscopy: A prospective double blind randomized trial
[ISRCTN76623768]. BMC Gastroenterology, 4(2) Doi: 10.1186/1471-230X-4-2 [Open
access].
Sanders, B. (2014). Stigma, deviance and morality in young adults’ accounts of
inflammatory bowel disease. Sociology of Health & Illness, 36(7), 1020–1036.
Sawczenk, O. A., Sandhu, B. K., Logan, R. F. A., Jankins, H., Taylor, C. J., Mian, S., &
Lynn, R. (2001). Prospective survey of childhood inflammatory bowel disease in the
British Isles. The Lancet, 357, 1093–1094.
Schwenk, H. T., Lightdale, J. R., Arnold, J. H., Goldmann, D. A. & Weitzman, E. R.
(2014). Coping with College and Inflammatory Bowel Disease: Implications for Clinical
Guidance and Support. Inflammatory Bowel Disease, 20, 1681-1627.
Scrimin, S., Haynes, M., Altoè, G., Bornstein, M. H., & Axia, G. (2009), Anxiety and stress
in mothers and fathers in the 24 h after their child’s surgery. Child: Care, Health and
Development, 35(2), 227-233.
Sewitch, M. J., Abrahamowicz, M., Bitton, A., Daly, D., Wild, G. E., Cohen, A., Katz, S.,
Szego, P. L., & Dobkin, P. L. (2001). Psychological Distress, Social Support, and Disease
Activity in Patients with Inflammatory Bowel Disease. The American Journal of
Gastroenterology, 96(5), 1470-1479.
Shields, L., Pratt, J., Davis, L. M., & Hunter, J. (2007). Family-centred care for children in
hospital. Cochrane Database Systematic Review, Issue 1,
doi:10.1002/14651858.CD004811.pub2.
Sommer, D., Pramling-Samuelsson, I., & Hundeide, K. (2010). Child Perspectives and
Children’s Perspectives in Theory and Practice. London: Springer.
Sorser, S. A., Konanki, V., Hursh, A., Haglund, K., & Lions, H. (2014). 1-day bowel
preparation with polyethylene glycol 3350 is as effective and safe as a 3-day preparation
for colonoscopy in children. BMC Research Notes, 7, doi: 10.1186/1756-0500-7-648
[Open access].
Stuart, M., & Melling, S. (2014). Understanding nurses’ and parents’ perceptions of familycentred care. Nursing Children and Young People, 26(7) 16-21.
84
84
Szigethy, E. M., Youk, A. O., Benhayon, D., Fairclough, D., Newara, M. C., Kirshner, M.
A., Bujoreanu, S. I., Mrakotsky, C., Bousvaros, A., Srinath, A. I., Keljo, D. J., Kupfer, D.
J., & De Maso, D. R. (2014). Depression Subtypes in Pediatric Inflammatory Bowel
Disease. Journal of Pediatric Gastroenterology and Nutrition, 58(5), 574-581.
Söderbäck, M., Coyne, I., & Harder, M. (2011). The importance of including both a child
perspective and the child’s perspective within health care settings to provide truly childcentred care. Journal of Child Health Care, 15, 99-106.
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.
Terry, N. A., Chen-Lim, M. L., Jatla, M., Ciavardone, D., Esch, S., Farace, L., Jannelli, F.,
Puma, A., Carlow, D., & Mamula, P. (2013). Polyethylene glycol powder solution
versus senna for bowel preparation for colonoscopy in children. Journal of Pediatric
Gastroenterology and Nutrition, 56(2), 215-219.
Thakkar, K., Halub, J. L., Gilger, M. A., Shub, M. D., McOmber, M., Tsou, M., &
Fishman, D. S. (2015). Quality indicators for pediatric colonoscopy: results from a
multicenter consortium. Gastrointestinal Endoscopy [Article in press].
Triantafillidis, J. K., Merikas, E., Nikolakis, D., & Papalois, A. E. (2013). Sedation in
gastrointestinal endoscopy: current issues. World Journal of Gastroenterology, 19, 463481.
Turcotte, J. F., Wong, K., Mah, S. J., Dielemon, L. A., Kao, D., Kroeker, K., Claggett, B.,
Saltzman, J. R., Wine, E., Ferdorak, R. N., & Liu, J. J. (2012). Increased epithelial gaps
in the small intestine are predictive of hospitalization and surgery in patients with
inflammatory bowel disease. Clinical and Translational Gastroenterology, 26, 1-6.
Turner D, Benchimol EI, Dunn H, Griffiths, A. M., Frost, K., Scaini, V., Avolio, J., & Ling,
S. C. (2009). Pico-Salax versus polyethylene glycol for bowel cleanout before
colonoscopy in children: a randomized controlled trial. Endoscopy, 41, 1038-45.
Turunen, P., Kolho, K. L., Auvinen, A., IItanen, S., Huhtala, H., & Ashorn, M. (2006).
Incidence of inflammatory bowel disease in Finnish children, 1987–2003. Inflammatory
Bowel Diseases, 12, 677-683.
Van der Zaag-Loonen, H. J., Groothenhuis, M. A., Last, B. F., & Derkx, H. F. (2004).
Coping strategies and quality of life of adolescents with inflammatory bowel disease.
Quality of life Research, 13, 1011-1019.
Varni, J. W., Franciosi, J. P., Shulman, R. J., Saeed, S., Nurko, S., Neigut, D. A., Bendo, C.
B., Patel, A. S., Self, M. M., Saps, M., Zacur, G. M., Denham, J., Vaughan Dark, C., &
Pohl, J. F. (2015). PedsQL Gastrointestinal Symptoms Scale and Gastrointestinal Worry
Scales in Pediatric Patients with Inflammatory Bowel Disease in Comparison with
Healthy Controls. Inflammatory Bowel Disease, 2(5), 1115-1124.
Viera, A. J., & Garrett, J. M. (2005). Understanding Interobserver Agreement: The Kappa
Statistic. Family Medicine, 37, 360-363.
85
85
Walia, R., Steffen, R., Feinberg, L., Wotley, S., & Mahajan, L. (2013). Tolerability, safety,
and efficacy of PEG 3350 as a 1-day Bowel Preparation in children. Journal of Pediatric
Gastroenterology and Nutrition, 56(2), 225-228.
Wennick, A., Lundqvist, A., & Hallström, I. (2009). Everyday experience of families three
years after diagnosis of type 1 diabetes in children: a research paper. Journal of Pediatric
Nursing, 24(3), 222-230.
World Medical Association (2000). Declaration of Helsinki: ethical principles for medical
research involving human subjects. Geneva: WMA.
Worthington, J., Thyssen, M., Chapman, G., Chapman, R., & Geraint, M. (2008). A
randomised controlled trial of a new 2 litre polyethylene glycol solution versus sodium
picosulphate + magnesium citrate solution for bowel cleansing prior to colonoscopy.
Current Medical Research and Opinion, 24(2), 481-488.
United Nations General Assembly (1989). Convention on the Rights of the Child. Geneva:
UN.
86
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APPENDICES
87
87
Appendix I
Questionnaire for acceptability (III)
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
2.
Lätt
Svårt
Mycket svårt
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
88
88
Appendix II
Questionnaire for tolerability (III)
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
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?
Inte alls
Lite
Mycket
Jättemycket
89
89
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 colonoscopy 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 hospital 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 colonoscopy and may provide professional care staff with the basis for future nursing
assessments.
What does this paper contribute
to the wider global clinical
community?
• 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 experience prior to colonoscopy can improve the chances
of healthcare staff carrying out
the colonoscopy in a way that
children experience as less distressing.
Key words: children, children’s nurses, colonoscopy, paediatric nursing, patient’s
experience, preparation, qualitative study
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,
1038
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
Journal of Clinical Nursing, 24, 1038–1047, doi: 10.1111/jocn.12661
Experience of Swedish children
Original article
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 (48%) increase in annual incidence
(Malmborg et al. 2013) above that observed between
1990–2001 (Hildebrand et al. 2003). At present, the clinical 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 intestine (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 regimen, identifying instead several evidence-based protocols
for evaluation in the search for an optimal method for paediatric 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
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1038–1047
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 information 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 children 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.
1039
V Vejzovic et al.
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 colonoscopy 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 during 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 colonoscopy. 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 children, 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 interests. In this way, the children were provided with the
opportunity to ask questions about what they felt was
1040
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 interviews. 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 summarising the text while retaining the content. The same authors
then individually open-coded the data to provide a summarised statement or word for each of the elements that
were used by the children in the text. The various descriptions 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 categories was assessed and one overall theme was identified
and formulated. Examples of the data analysis are presented in Tables 1 and 2.
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1038–1047
Experience of Swedish children
Original article
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
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
Hard/tough/disgusting taking the laxative
Participation
Different strategies
Thoughts about the disease/colonoscopy
Fear/pain/anxiety
Stressful
Friends
Nice staff
Parents
2. Mastering
the situation
3. Reluctantly
participating
4. Feeling emotional
support
Information from relatives
taken, and the children were recommended to start on a
special diet. The bowel preparation comprised a polyethylene 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 preparation for the administration of a general anaesthetic. The
colonoscopy was performed while the child was under general anaesthetic.
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 consideration in relation to the interviews, as accounts were
obtained of their experiences of an investigation that is considered 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 opportunity that might not otherwise have been available to them.
Setting
At the time of the study, the number of paediatric colonoscopies at the study hospital was approximately 50 per year.
The colonoscopies were performed in accordance with standard 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 preparative regime, various capillary blood samples were
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1038–1047
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. To enhance the conformance of the study’s findings, 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
1041
V Vejzovic et al.
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
1042
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 sufficient, but they did not feel comfortable asking the healthcare 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 children’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 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. (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
Journal of Clinical Nursing, 24, 1038–1047
Experience of Swedish children
Original article
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 considered a sufficient argument in favour of the procedure. Nevertheless, some of the children agreed to the insertion of a
nasogastric tube while expressing that they found the procedure to be as unpleasant as having something foreign in
their stomach felt unnatural:
I don’t think so much about what could happen . . . I can’t affect
They said . . . if I thought that it was too hard to drink it and taste
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 children 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:
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 stomach . . . I don’t like it . . . I think it will only get worse . . . I preferred 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 situation 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 conclusive findings was also a concern. When asked, every
child voluntarily agreed to undergo the colonoscopy; however, 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:
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1038–1047
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 diagnosis but that they wanted to do it to reduce their parents’
anxiety. One child described ‘mum’s nagging’ as bothersome 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)
She (the mother) had a lot of patience . . . I wasn’t perhaps the nicest 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 preparation and when the parents demonstrated patience. 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, age 17)
‘Good’, ‘nice’ and ‘honest’ were words used by the children 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)
1043
V Vejzovic et al.
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 perceived that the staff expected them to undergo the preparations 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 questions.
Discussion
The study shows that ‘a private affair’ is the most important 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 indicate 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 colonoscopy to their friends. This is in consensus with Berntsson 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 easier to talk to their friends about diseases that everyone
knows about.
1044
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 situation 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 strategies 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 themselves while simultaneously needing caring and warmth.
In the present study, children acquired information in different ways and, depending on their own ability to process
it, sought the help of their parents. Age-appropriate information 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). Planning 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 procedure (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; however, 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 colonoscopy, we can only presume that the standard information 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 colonoscopy. This is confirmed by several other studies (Li &
Lopez 2007, Gursky et al. 2010, Robinson 2010). The children’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 additional 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 proceedings, children did not feel dependent on the information 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
Journal of Clinical Nursing, 24, 1038–1047
Experience of Swedish children
Original article
(2010) who suggest that the parents play an important role
as information providers and can ease the stress for children experiencing various medical procedures. This is particularly 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 perspective, which is an important perspective. The UN Convention 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 expressing their experience was the determining factor. Furthermore, 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 descriptions 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 colonoscopy was something they wanted to keep to themselves 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 appreciated an active role in the preparatory steps and an
opportunity to choose between different options, if available.
Relevance to clinical practice
The children’s experiences recorded in this study can contribute 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 requirements 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 children to minimise the negative experiences of the procedure. 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 questions.
Disclosure
The authors have confirmed that all authors meet the
ICMJE criteria for authorship credit (www.icmje.org/ethical_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.
References
Alderson P, Sutcliffe K & Curtis K (2006)
Children as partners with adults in
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1038–1047
their medical care. Archives of Disease
in Childhood 91, 300–303.
Berntsson L, Berg M, Brydolf M &
Hellstr€
om A-L (2007) Adolescents’
1045
V Vejzovic et al.
experiences of well-being when living
with a long-term illness or disability.
Scandinavian Journal of Caring Sciences 21, 419–425.
Brady AM, Malone AM & Fleming S
(2009) A literature review of the individual and systems factors that contribute to medication errors in nursing
practice. Nursing Management 17,
679–697.
Burnard P (1996) Teaching the analysis of
textual data: an experiential approach.
Nurse Education Today 16, 278–281.
Burnard P, Gill P, Stewart K, Tresure E. &
Chadwick B (2008) Analysing and
presenting qualitative data. British
Dental journal 204, 429–432.
Cline RJ, Harper FW, Penner LA, Peterson
AM, Taub JW & Albrecht Tl (2006)
Parent communication and child pain
distrss during painful pediatric cancer
treatments. Social Science & Medicine
63, 883–898.
Convention on the Rights of the Child
(1989) UN Doc General Assembly
A/RES/44/25, 61st plenary meeting on
20 November 1898.
Elitsur Y (2013) Colon preparation for
children: the quest for the ideal
protocol. Journal of Pediatric Gastroenterology and Nutrition 57, 14 doi:
10.1097/MPG.0b013e3182999b65.
ESPGHAN: IBD Working Group of the
European Society for Paediatric Gastroenterology, Hepatology and Nutrition (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, Charleston R & Sheehan S (2010) Child and
parental surveys about pre-hospitalization information provision. Child:
Care, Health and Development 37,
727–733.
Gursky B, Kastler L & Lewis M (2010)
Psychosocial intervention on procedure-related distress in children being
treated for laceration repair. Journal
of Developmental and Behavioral
Pediatrics 31, 214–222.
1046
Haskard KB, DiMatteo MR & Heritage J
(2009) Affective and instrumental
communication in primary care interactions: 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 paediatric 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 children 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 information and distraction on children‘s coldpressor pain outcomes: a randomized
controlled trial. Behaviour Research
and Therapy 45, 2789–2799.
Korteslouma R-L, Hentinen M & Nikkonen M (2003) Conducting a qualitative 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 population-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 anxiety scale for children. International
Journal of Nursing Studies 44, 566–
573.
Mahajan L, Wyllie R, Steffen R, Kay M, Kitaoka 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, Hepatology, and Nutrition 27, 161–165.
Malaty HM, Fan X, Opekun AR, Thibodeaux C & Ferry GD (2010) Rising
incidence of inflammatory bowel disease 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 paediatric inflammatory bowel disease in
Northern Stockholm county 2002–
2007. Journal of Pediatric Gastroenterology 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 hospitalizations of children with inflammatory
bowel disease within the United States
from 2000 to 2009. Journal of Investigative Medicine 61, 1036–1038.
Pelander T & Leino-Klipi H (2010) Children’s best and worst experiences during
hospitalization. Scandinavian Journal of
Caring Sciences 24, 726–733.
Piaget J & Inhelder B (1969) The Psychology 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 Pediatric 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) Presenting features of inflammatory
bowel disease in Great Britain and
Ireland. Archives of Disease in Child-
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1038–1047
Experience of Swedish children
Original article
hood 88, 995–1000. doi:10.1136/adc.
88.11.995
Sawczenko A, Sandhu BK, Logan RFA, jankins H, Taylor CJ, Mian S & Lynn R
(2001) Prospective survey of childhood 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 Endoscopy 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 Gastroenterology 26, 1–6.
Turner D, Lavine A, Weiss B, Hirsh A &
Shamir R (2010) Evidence-based recommendations for bowel cleansing
before colonoscopy in children: a rapport from a national working group.
Endoscopy 42, 1063–1070.
Turunen P, Kolho KL, Auvinen A, IItanen S,
Huhtala H & Ashorn M (2006) Incidence of inflammatory bowel disease in
Finnish children, 1987–2003. Inflammatory Bowel Diseases 12, 677–683.
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Journal of Clinical Nursing, 24, 1038–1047
1047
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Journal for Specialists in Pediatric Nursing
ORIGINAL ARTICLE
Parents’ experiences when their child is undergoing an
elective colonoscopy
Vedrana Vejzovic, Ann-Cathrine Bramhagen, Ewa Idvall, and Anne Wennick
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 Perioperative Medicine, Skåne University Hospital; and Anne Wennick, RN, RSCN, PhD, is a Senior Lecturer,
Department of Care Science, Faculty of Health and Society, Malmö University, Malmö, Sweden
Search terms
Colonoscopy, parent, pediatric nursing,
qualitative research.
Author contact
[email protected], with a copy to the
Editor: [email protected]
Acknowledgement
No 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.
Abstract
Purpose. The purpose was to illuminate parents’ experiences when their
children are undergoing an elective colonoscopy performed using polyethylene glycol-based regimes for bowel preparation.
Design and Methods. Individual interviews with 12 parents were performed and analysed using content analysis.
Results. The parents’ experiences were 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.”
Practice Implications. Understanding parents’ experiences can help
healthcare staff guide parents in helping their children undergo a
colonoscopy.
doi: 10.1111/jspn.12109
Colonoscopy is considered a safe and effective
examination and treatment of children, and is currently the gold standard procedure for assessment
and evaluation of the colon. The number of children
undergoing a colonoscopy to determine paediatric
inflammatory bowel disease, chronic diarrhoea, and
abdominal pain is increasing worldwide (Pant et al.,
2013; Rabizadeh & Dubinsky, 2013).
Previous research with parents of children undergoing preoperative preparation has shown that parents
usually experience a lack of information or that the
information supplied is not adapted to their individual
needs (Bray, Callery, & Kirk, 2012). Recent research
of parents who shared their experience of their
hospitalised child has, however, emphasised the
importance of information (Byczkowski, Munafo, &
Britto, 2014; McGarry et al., 2014). Parents consider
information as the most essential factor for being able
to cope with their children’s situations (Andersson,
Journal for Specialists in Pediatric Nursing 20 (2015) 123–130
© 2015, Wiley Periodicals, Inc.
Johansson, & Almerud Österberg, 2012). This is particularly important because it is usually the parents
who provide their children with the required information about colonoscopy (Gordon et al., 2011; Vejzovic,
Wennick, Idvall, & Bramhagen, 2014).
For a colonoscopy to be effective, a large volume
of laxative must be ingested over a relatively short
period of time, which is not always easy for the child
(Elitsur, Butcher, Lund, & Elisur, 2013; Friedt &
Welsch, 2013). In an interview study with children
age 10–17 years, the children had difficulties ingesting large quantities of the bad-tasting fluid, regardless of age (Vejzovic et al., 2014). Children also
expressed that they needed support from their
parents to cope with the bowel preparation as well as
the colonoscopy (Vejzovic et al., 2014).
Prior to a colonoscopy, a child must undergo
several procedures to prepare for the examination,
including cleansing the colon of faecal debris to
123
Parents’ Experiences When Their Child Is Undergoing an Elective Colonoscopy
ensure adequate visualisation (Elitsur et al., 2013;
Turcotte et al., 2012). The bowel can be prepared
with several different regimens, but polyethylene
glycol (PEG) has been recommended as first line for
paediatric bowel preparation for many years (Friedt
& Welsch, 2013; Millar, Rode, Buchler, & Cywes,
1988; Sondheimer, Sokol, Taylor, Silverman, &
Zelasney, 1991). Colonoscopies in children are
usually performed while the child is under general
anaesthesia. Thus, in addition to cleansing the colon,
the preparatory procedure involves the insertion of
a peripheral venous catheter and preparation for
administration of general anaesthesia.
Previous research has shown that children need to
be psychologically well prepared before undergoing
stressful medical procedures (Larsen, Heilmann,
Johansen, & Adamsen, 2011; Pelander & Leino-Kilpi,
2010). Proper psychological preparation of the child
before a colonoscopy increases the child’s understanding of the procedure and reduces stress on both
the child and parents (Tanaka et al., 2011). Parental
involvement is beneficial for a child’s well-being and
quality of care, and therefore is an important factor in
the care of the hospitalised child (Coyne, 2013). For
example, a study by Aein, Alhani, Mohammadi, and
Kazemnejad (2009) showed that parental presence
during a child’s hospital stay reduced the child’s emotional stress and increased the child’s safety and cooperativeness.
Parents are generally willing to assist in their
child’s care and to support the child. However, to
participate fully, they require supervision, support,
and a clear explanation of what their role entails
(Coyne, 2013), especially in situations in which they
may lose control (Andersson et al., 2012).
Children also have expressed their need for parental support to cope with the bowel preparation as
well as the colonoscopy (Vejzovic et al., 2014).
Parents have an important role in supporting their
children in difficult medical investigations, such as a
colonoscopy, and therefore it is important to learn
from their experiences. This was the reason for conducting the present study, with the aim of illuminating parents’ experiences when their children
undergo elective colonoscopy using a PEG-based
regime for bowel preparation.
METHODS
The study applied a qualitative descriptive design
using interviews for data collection and content
analysis influenced by Burnard, Gill, Stewart,
Treasure, and Chadwick (2008) for data analysis.
124
V. Vejzovic et al.
Participants
Data were obtained from 12 parents (11 mothers and
1 father). Participants were 30–64 years old (Mdn =
39); eight were Swedish, two were from other European countries, and two were Asian. The family size
varied from one to four children, and two participants
were living with the other biological parent. Three
participants were single parents, and seven were
living with other partners. All parents had previous
experiences of paediatric care, and five had experiences of hospital paediatric care and anaesthesia.
Using criterion sampling (Patton, 2001), a total of 14
parents of children undergoing a colonoscopy at a children’s university hospital in southern Sweden were
asked whether they wished to participate. Two parents
declined, and 12 were included. The inclusion criteria
for the study were parents with children younger than
18 years who had undergone their first elective colonoscopy performed using a PEG-based regimen and
who understood and spoke the Swedish language.
Ethical considerations
Ethical approval was granted by the Regional Ethical
Review Board in Lund (Ref. No. 2012/ 186).
Data collection
The parents were given written and verbal information
about the study by a paediatric nurse who was
involved in the children’s admissions to the hospital.
The paediatric nurse was not involved in a child’s
preparation but responsible for the registration of a
child. The parents were also informed about the study
design and that it would be conducted by the first
author, 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 participate
in the study and informed that their responses would
be treated confidentially. Verbal informed consent was
obtained from those interested in participating, and a
time and location for the interview, chosen by the
parent, was scheduled. At the time of the interview,
written informed consent was obtained. The parents
were informed that participation was voluntary and
that they could withdraw at any time without any consequences for their children.
Interviews
All interviews were conducted in 2013, 7–10 days
after each child had undergone a colonoscopy. The
Journal for Specialists in Pediatric Nursing 20 (2015) 123–130
© 2015, Wiley Periodicals, Inc.
Parents’ Experiences When Their Child Is Undergoing an Elective Colonoscopy
V. Vejzovic et al.
Final coding framework
Initial coding framework
Charged with conflicting emotions
Difficulties assisting child to take the laxative
Being forced to force
Could not take the child’s side
Could not show empathy
Losing one’s sense of being a parent
Concerned about the child’s symptoms
Lose control
In favour of colonoscopy
Figure 1 An Overview of the Final Coding
Framework.
Involvement in bowel preparation
Colonoscopy in the hospital with experts
Responsibility for the bowel preparation
Standing without guidance
Without knowledge about colonoscopy
Without knowledge about hospital protocols
Need to plan
Feeling uncomfortable
interviews took place in the family’s home (n = 9) or
in a secluded parlour at the hospital (n = 3). The
duration of the interviews varied from 17 to 52 min
(Mdn = 33.39). Interviews started with an opening
question allowing the parents to describe “the
reason why the colonoscopy was performed,” followed by an open question about their “experiences
when their child underwent a colonoscopy.”
Follow-up questions such as “What do you mean?”,
“Could you explain?”, “Could you tell me a bit more
about that?”, “How did you feel when . . .?” and
“What were you thinking about . . .?” were frequently asked throughout the interviews.
batim, and then read and re-read by three of four
authors to ensure familiarity with the data. Second,
the text was read again in search of sentences or words
describing parents’ experiences with their children
undergoing elective colonoscopies. These sentences
were condensed into meaning units. Words that
described parents’ experiences were abstracted, and all
the authors first separately and then together created
codes that were sorted into one theme and three categories (Figure 1). The co-authors coded the material
separately but discussed and compared the material
jointly until consensus was reached.
Data analysis
FINDINGS
Data were analysed using content analysis (Burnard
et al., 2008). First, the interviews were transcribed ver-
Parents’ experiences when their children were
undergoing elective colonoscopies performed using
Journal for Specialists in Pediatric Nursing 20 (2015) 123–130
© 2015, Wiley Periodicals, Inc.
125
Parents’ Experiences When Their Child Is Undergoing an Elective Colonoscopy
a PEG-based regime for bowel preparation were
identified as belonging to one theme: “Charged with
conflicting emotions”; and three categories: “Being
forced to force,” “Losing one’s sense of being a
parent,” and “Standing without guidance.” The categories are reinforced by quotes from parents who
described their experiences.
Charged with conflicting emotions
During the entire hospital stay, parents experienced
a constant inner battle between feelings of hope and
feelings of despair. They hoped that nothing serious
would be discovered, although that possibility
existed and was constantly present. However, they
felt despair, as there were too many unanswered
questions about the child’s condition, resulting in a
feeling of being pressured. Therefore, they desired
answers and a solution to their child’s state of
health. Additionally, they struggled with the
thought of various serious diseases that might be
found during the colonoscopy.
Simultaneously, they felt relieved that the colonoscopy was performed under general anaesthesia,
and therefore the child hopefully did not have a difficult experience. Meanwhile, they experienced
increased levels of anxiety as the time to begin the
anaesthesia was approaching. Regardless of whether
they were in the company of other relatives or not,
they experienced being alone with their thoughts
while waiting for the colonoscopy to be performed.
Therefore, the parents experienced conflicting emotions regarding their involvement in their children’s
bowel preparation prior to, as well as during, and
after the colonoscopies. Their wish to be at their children’s sides and to support them was in constant
conflict with a feeling of standing without guidance
while preparing prior to the colonoscopy, in which
they had to force the child to undergo the bowel
preparation. The parents felt uncomfortable with
the responsibility they were given.
Being forced to force
The children showed no reluctance to undergo their
colonoscopies, which was a relief to their parents.
However, this attitude changed as soon as the children started drinking the laxative. Although the
parents understood the necessity to drink the laxative for the bowel cleansing to succeed, they perceived it as a difficult task to have been assigned.
Therefore, they felt forced to force their children to
drink the laxative as they feared that the colonos126
V. Vejzovic et al.
copy would not be performed if the bowel was not
clean, and they would risk having to go through
everything again. They felt that they could not take
their children’s perspectives and had to overlook
their requirements due to the responsibility for the
bowel preparation to be performed correctly. “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 is
poisonous. I knew that it wasn’t poisonous, but she
still didn’t 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).
The parents felt that they had to be strict towards
their children instead of being empathic. “You have
to nag because it needs to go down and to show that
it needs to be done . . . so I had to be on her back all
the time: ‘now you have drunk . . . and rested a bit,
now you need to take it again . . . the time is passing
and soon there will be another litre . . . and another,’
if she could decide herself then she would never
have drunk it . . . you need to be with it all the time
. . .” (IP 1).
Therefore, the parents needed to hide their own
feelings to be able to force their children to undergo
the preparation despite 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 support and not like show myself and encouraged him, it is going well, you are 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). The parents emphasised that although the situation forced them to put
the child’s feelings aside and force the child to
proceed with the bowel preparation, it was necessary for the colonoscopy to be performed.
Losing one’s sense of being a parent
The parents expressed that it was important to be
able to feel like a parent and to be with and for their
children. However, the bowel preparation implied
many steps during the first day at the hospital, which
meant having to “prioritise” these steps instead of
the child’s feelings and needs. The parents, therefore, experienced that it was impossible to be a supporting parent during the bowel preparation prior to
the colonoscopy. Instead, their role as a parent was
transformed into a parent who was unable to help
his/her children. Although they were happy with
the fact that they could be with their children, they
Journal for Specialists in Pediatric Nursing 20 (2015) 123–130
© 2015, Wiley Periodicals, Inc.
V. Vejzovic et al.
Parents’ Experiences When Their Child Is Undergoing an Elective Colonoscopy
felt that they had to act against the child rather than
just to be with her or him. “I felt sorry for her, it was
tough . . . I just wanted to be there to support her
. . .” (IP 3).
Because their children experienced symptoms
from the bowel preparation and were not feeling
well, the parents thought of the colonoscopy as an
opportunity. They believed that a successful colonoscopy could generate a diagnosis, and a correct
diagnosis could generate a correct treatment. “Her
stomach has hurt for several years, on and off, so
I was worried about her . . . getting a colonoscopy done was a little difficult but at the same time
I was happy that someone had believed us . . .”
(IP 2).
Therefore, being enrolled at the hospital for the
bowel preparation, which involved ingesting a large
volume of laxative, as opposed to taking it at home,
was considered to be safe. “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 background yourself, you feel safe because
you are around those who are competent . . .”
(IP 6).
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 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. While the healthcare staff was present,
everything was under control, but as soon as the
parent was left alone with the child, the child
showed unwillingness to drink the laxative, which
led to parents being compelled to act in a manner
which, as one parent expressed, aroused “strong
feelings of guilt afterwards” (IP 4). Another parent
said: “They (the healthcare staff) were good but they
don’t know her and she didn’t say much when they
were there . . . when they left she just said no . . . she
wanted to go home . . .” (IP 7).
The parents wanted to be with their children during
their hospitalisations as parents, but instead they experienced that they lost their sense of being a parent.
Standing without guidance
The parents felt that it was important to have prior
knowledge about each step of the investigation and
a need for all the components to be planned ahead in
detail. They experienced difficulties in assisting their
Journal for Specialists in Pediatric Nursing 20 (2015) 123–130
© 2015, Wiley Periodicals, Inc.
children because the information regarding the different steps of the investigation continuously
changed. Difficulties intensified due to their unfamiliarity with the routines and environment at the
hospital. “I knew that he was going to go, but didn’t
know where he was going to go . . . not which
department . . . even though we understood that we
were going to go to the department where we will
perform this . . . we weren’t told what it is called or
where it is or . . .” (IP 5). This factor resulted in
parents feeling that they did not receive the guidance they had expected, which in turn negatively
affected the in-hospital stay experience. The same
parent continued: “. . . I didn’t know how it was
going to happen and that is also something I think
about . . . even that the information had been sent in
the notice to attend . . . I understand that everything
is personal with these things, but a form of outline
. . . of what is happening . . . that is what I thought
about . . . during those entire two days . . . all the
time” (IP 5).
The parents experienced that the healthcare staff
suffered from time constraints. Therefore, because
the parents did not share the healthcare staff’s
knowledge about or experience of the colonoscopy
or similar procedures, they experienced that the staff
informed them too quickly. This rushed information
caused difficulties, as the parents needed to inform
their children about the procedures. The lack of clear
information led to feelings of anxiety, as the parents
felt that their children expected answers to their
questions, which they were not confident in providing. “He (the son) asked me all the time . . . I haven’t
done this . . . I didn’t know a lot . . . didn’t dare to
answer . . . I was scared that I would say the wrong
thing . . .” (IP 10).
Another difficulty was that the provided information was not always accurate in terms of what would
happen next or when. This misinformation caused
the parents to feel uncertainty, reduced their trust in
the healthcare staff, and led to irritation. “I got irritated with the person who said the wrong thing, I
didn’t trust her then. We didn’t really believe the
information which she came with later, we wanted
to hear it from someone else . . .” (IP 8). Therefore,
the importance of clear information provided by the
healthcare staff was emphasised.
These difficulties contributed to an experience of
being left alone at the child’s bedside. “If I am really
honest then it was terrible . . . you are lonely and sad
when the doors close . . . didn’t have control . . .
didn’t know what happens in there . . . didn’t know
what to expect . . . it was tough” (IP 12). The parents
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Parents’ Experiences When Their Child Is Undergoing an Elective Colonoscopy
suggested that the healthcare staff show an
increased interest in spending time with the parent
and child to support and educate them and to reassure the parent of their actions and statements to the
child.
DISCUSSION
This study shows that parents whose children
undergo elective colonoscopies are charged with
conflicting emotions and need guidance during their
children’s bowel preparations and the following
steps in the preparations prior to a colonoscopy.
Because colonoscopy is an investigation that causes
discomfort to the child, parents felt uncomfortable in
the in-hospital-stay-role that was unexpectedly
assigned to them. Parents came to the hospital with
the belief that there would be assistance from the
healthcare staff, but they did not receive the assistance needed. Parents’ expectations came into conflict with the actual situations, which may have
affected their experiences of their children’s
in-hospital stays for their colonoscopies. Parents felt
responsible for their children’s emotional well-being
and the responsibility for the bowel cleansing procedure prior to colonoscopy.
Previous research has also shown that parents feel
responsible for their children’s physical care and emotional welfare, and are willing to provide basic childcare but are reluctant to perform nursing care if it
would cause their children pain or discomfort (Power
& Franck, 2008; Stuart & Melling, 2014). It is possible
that the parents and the healthcare staff have different
perceptions whether the bowel preparation is considered to be basic childcare or nursing care; therefore, it is
important to clarify this perception. It is also possible
that they have not discussed their mutual roles in the
child’s care during the preparations prior to the colonoscopy, which may have contributed to the difficulties the parents experienced. Previous studies about
family-centred care show that it is unclear if parents
and healthcare staff discuss their roles or care activities
during a child’s hospitalisation (Coyne, 2013; Stuart &
Melling, 2014).
It is interesting that the parents, regardless of their
need for help or support, did not ask the healthcare
staff for help. This factor is perhaps the reason why
the healthcare staff felt that there was no need to
provide them with any further help. However,
parents may not always feel comfortable asking for
help and particularly not if they think that the
healthcare staff expect them to be able to manage
the situation. This lack of interaction may perhaps
128
V. Vejzovic et al.
also explain why the parents in our study experienced that the information provided by the healthcare staff was insufficient for their individual needs.
Previous research with healthcare staff has shown
that they believe that they are extremely sensitive to
the needs of the parents and their children in
informing about procedures (Lloyd, Urquhart,
Heard, & Kroese, 2008), whereas studies with
parents show that parents feel a lack of individual
preparation for childcare (Andersson et al., 2012;
Bray et al., 2012; Chorney & Kain, 2010; Ford,
Courtney-Pratt, & Fitzgerald, 2012). These factors
are even more important if a child needs to undergo
a colonoscopy, which can be difficult for both the
child and the parents.
According to hospital policy, written information
about colonoscopy and its preparation is usually
sent by mail to all children and their parents a few
days before the scheduled procedure. Verbal information about all the details before and during colonoscopy is usually given to all families. However,
the fact that parents emphasised their lack of information and knowledge about the procedure prior
to the elective colonoscopy may indicate that this
protocol is not sufficient. Therefore, parents need
further guidance so that they do not feel too great
a responsibility for the child’s preparation for colonoscopy. This factor is important because a child
prefers to ask his or her parents about a colonoscopy, as he/she does not feel comfortable with
asking questions to the healthcare staff (Vejzovic
et al., 2014). Therefore, the healthcare staff actively
need to ask parents about their needs as well as
their children’s needs. Additionally, children have
recounted that the presence of their parents
enables them to relax and helps them to divert
their thoughts from the colonoscopy and supports
them through the particularly difficult aspects
of the process, such as ingesting the laxative
(Vejzovic et al., 2014). Therefore, if parents are
comfortable with the procedure, they will feel confident and they may support their children in a
better way.
The parents’ conflicting emotions based on lack of
guidance may have negatively influenced the children’s willingness to cooperate. Because the children were more cooperative if the healthcare staff
were present, more time with the healthcare staff
may have been desirable. This finding shows that
parents’ guidance needs to be designed in a way that
leads to clear roles in which parents can continue to
be parents in nursing situations and support their
children as parents.
Journal for Specialists in Pediatric Nursing 20 (2015) 123–130
© 2015, Wiley Periodicals, Inc.
V. Vejzovic et al.
Parents’ Experiences When Their Child Is Undergoing an Elective Colonoscopy
The parents in our study experienced the time
at the hospital as stressful and lonely, which is
consistent with a systematic literature review of
research on parent participation in the care of
hospitalised children (Power & Franck, 2008). When
health professional staff realise that parents are
stressed, they have an opportunity to try and understand the parents’ situations better. It is important
that healthcare staff frequently take the time and
make contact with parents during hospitalisation
and update parents throughout the planning and
implementation of procedures.
Scientific rigour
The analytical process was conducted both independently and jointly to meet the demands of trustworthiness. Although the intention was to interview
both parents, only one father 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; Scrimin,
Haynes, Altoè, Bornstein, & Axia, 2009). To reduce
variability in the research procedures, the first
author conducted all the interviews. Interview transcripts were not returned to respondents to determine credibility. Therefore, to enhance the study’s
credibility, the data analysis was performed individually by three of the authors, followed by frequent discussion of the categories (Lincoln & Guba,
1985). The interviews were conducted after the
parents had received a preliminary response to the
colonoscopy but before they were given a definitive
result from the gastroenterologist. This timing may
also have impacted the study results.
CONCLUSION
Parents experience conflicting emotions when their
children undergo elective colonoscopy. Additionally, they feel responsible to ensure their child complies with test requirements, which indicates that
they need continuous guidance from healthcare
staff to feel like parents. Parents also need clear and
specific guidance about what is expected from them
and the opportunity to receive training to feel secure
with the procedure.
Journal for Specialists in Pediatric Nursing 20 (2015) 123–130
© 2015, Wiley Periodicals, Inc.
How might this information affect
nursing practice?
This study may be an important step in future guidance of parents of children who need to undergo an
elective colonoscopy. Because parents have conflicting emotions, feel forced to force their children
to drink the laxative, feel like they lose their sense
of being a parent, and feel like they are without
guidance, healthcare staff need to better understand and guide parents through this procedure.
The results indicate that the healthcare staff need
time to establish a relationship with parents before
the child is admitted to the hospital. Our suggestion
is that parents can meet healthcare professionals
who will be present during the child’s preparation
at an information meeting a few days before the
planned examination to establish contact and
provide opportunities for questions and discussion
on the parents’ role when their children undergo a
colonoscopy. Therefore, an important step is to ask
parents what they and their children know about
colonoscopy and help them prepare fully for the
procedure. A dialogue between parents and
healthcare staff about their mutual roles is preferable to reduce parents’ anxiety and uncertainty.
This relationship is considered to be important
because parents felt that it was easier to manage
the child’s preparation when healthcare staff were
present at the bedside. Parents’ needs when their
children undergo difficult medical procedures and
staff perceptions of parents’ needs require additional research.
References
Aein, F., Alhani, F., Mohammadi, E., & Kazemnejad, A.
(2009). Parental participation and mismanagement: A
qualitative study of child care in Iran. Nursing & Health
Sciences, 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 first
anaesthetic 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 study
of the pre-operative preparation of children, young
people and their parents for planned continence
surgery: Experiences and expectations. Journal of Clinical
Nursing, 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.
129
Parents’ Experiences When Their Child Is Undergoing an Elective Colonoscopy
British Dental Journal, 204, 429–432. doi:10.1038/sj
.bdj.2008.292
Byczkowski, T. L., Munafo, J. K., & Britto, M. T. (2014).
Family perceptions of the usability and value of chronic
disease web-based patient portals. Health Informatics
Journal, 20(2), 151–162. doi:10.1177/
1460458213489054
Chorney, J. M., & Kain, Z. N. (2010). Family-centered
pediatric perioperative care. Anesthesiology, 112(3),
751–755. doi:10.1097/ALN.0b013e3181cb5ad
Coyne, I. (2013). Families and health-care professionals’
perspectives and expectations of family-centred care:
Hidden expectations and unclear roles. Health
Expectations. doi:10.1111/hex.12104; Advanced online
publication.
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 of
Gastrointestinal Endoscopy, 5(4), 165–168. doi:10.4253/
wjge.v5.i4.165
Ford, K., Courtney-Pratt, H., & Fitzgerald, M. (2012).
Post-discharge experiences of children and their
families following children’s surgery. Journal of Child
Health Care, 16(4), 320–330. doi:10.1177/
1367493512448129
Friedt, M., & Welsch, S. (2013). An update on pediatric
endoscopy. European Journal of Medical Research, 18(1),
24. doi:10.1186/2047-783X-18-24
Gordon, B. K., Jaaniste, T., Bartlett, K., Perrin, M., Jackson,
A., Sandstrom, A., . . . Sheehan, S. (2011). Child and
parental surveys about pre-hospitalization information
provision. Child: Care, Health and Development, 37(5),
727–733. doi:10.1111/j.1365-2214.2010.01190.x
Larsen, H. B., Heilmann, C., Johansen, C., & Adamsen, L.
(2011). An analysis of parental roles during
haematopoietic stem cell transplantation of their
offspring: A qualitative and participant observational
study. Journal of Advanced Nursing, 67(7), 1458–1467.
doi:10.1111/j.1365-2648.2010.05587.x
Lincoln, Y., & Guba, E. (1985). Naturalistic inquiry.
Thousand Oaks, CA: Sage Publications.
Lloyd, M., Urquhart, G., Heard, A., & Kroese, B. (2008).
When a child says “no”: Experiences of nurses working
with children having invasive procedures. Paediatric
Nursing, 20(4), 29–34. doi:10.7748/paed2008.05.20.4
.29.c8252
McGarry, S., Elliott, C., McDonald, A., Valentine, J., Wood,
F., & Girdler, S. (2014). “This is not just a little accident”:
A qualitative understanding of paediatric burns from the
perspective of parents. Disability and Rehabilitation, 37(1),
41–50. doi:10.3109/09638288.2014.892640
Millar, A. J. W., Rode, H., Buchler, I., & Cywes, S. (1988).
Whole-gut lavage in children using an iso-osmolar
solution containing polyethelene glycol(golytely).
130
V. Vejzovic et al.
Journal of Pediatric Surgery, 22(9), 822–824. doi:10.1016/
S0022-3468(88)80231-8
Pant, C., Anderson, M. P., Deshpande, A., Grunow, J. E.,
O’Connor, J. A., Philpott, J. R., & Sferra, T. J. (2013).
Trends in hospitalizations of children with inflammatory
bowel disease within the United States from 2000 to
2009. Journal of Investigative Medicine, 61(6), 1036–1038.
doi:10.231/JIM.0b013e31829a4e2510.231/JIM
.0b013e31829a4e25
Patton, M. Q. (2001). Qualitative research and evaluation
methods (2nd ed.). Thousand Oaks, CA: Sage
Publications.
Pelander, T., & Leino-Kilpi, H. (2010). Children’s best and
worst experiences during hospitalisation. Scandinavian
Journal of Caring Sciences, 24(4), 726–733. doi:10.1111/
j.1471-6712.2010.00770.x
Power, N., & Franck, L. (2008). Parent participation in the
care of hospitalized children: A systematic review.
Journal of Advanced Nursing, 62(6), 622–641.
doi:10.1111/j.1365-2648.2008.04643.x
Rabizadeh, S., & Dubinsky, M. (2013). Update in pediatric
inflammatory bowel disease. Rheumatic Disease Clinics of
North America, 39(4), 789–799. doi:10.1016/j.rdc.2013
.03.010
Scrimin, S., Haynes, M., Altoè, G., Bornstein, M. H., &
Axia, G. (2009). Anxiety and stress in mothers and
fathers in the 24 h after their child’s surgery. Child: Care,
Health and Development, 35(2), 227–233. doi:10.1111/
j.1365-2214.2008.00920.x
Sondheimer, J. M., Sokol, R. J., Taylor, S. F., Silverman, A.,
& Zelasney, B. (1991). Safety, efficacy and tolerance of
intestinal lavage in pediatric patients undergoing
diagnostic colonoscopy. Journal of Pediatrics, 19(1),
148–152. doi:10.1016/S0022-3476(05)1056-x
Stuart, M., & Melling, S. (2014). Understanding nurses’
and parents’ perceptions of family-centred care. Nursing
Children and Young People, 26(7), 16–21. doi:10.7748/
ncyp.26.7.16.e479
Tanaka, K., Oikawa, N., Terao, R., Negishi, Y., Fujii, T.,
Kudo, T., & Shimizu, T. (2011). Evaluations of
psychological preparation for children undergoing
endoscopy. Journal of Pediatric Gastroenterology and
Nutrition, 52(2), 227–229. doi:10.1097/MPG
.0b013e3181f25f57
Turcotte, J. F., Wong, K., Mah, S. J., Dieleman, L. A., Kao,
D., Kroeker, K., . . . Liu, J. J. (2012). Increased epithelial
gaps in the small intestine are predictive of
hospitalization and surgery in patients with
inflammatory bowel disease. Clinical and Translational
Gastroenterology, 3, e19. doi:10.1038/ctg.2012.13
Vejzovic, V., Wennick, A., Idvall, E., & Bramhagen, A. C.
(2014). A private affair: Children’s experiences prior to
colonoscopy. Journal of Clinical Nursing. doi:10.1111/
jocn.12661; Early view first published online.
Journal for Specialists in Pediatric Nursing 20 (2015) 123–130
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