- Email: [email protected]
Surgery in young adults with Inflammatory Bowel Disease: A narrative account
International Journal of Nursing Studies 50 (2013) 1566–1575
Contents lists available at SciVerse ScienceDirect
International Journal of Nursing Studies journal homepage: www.elsevier.com/ijns
Surgery in young adults with Inflammatory Bowel Disease: A narrative account Marion Allison a,*, James Lindsay b, Dinah Gould c, Daniel Kelly d a
Barts Health NHS Trust, Clinic 3 Ground Floor, South Tower, Royal London Hospital, Whitechapel, London, E1 1BB, UK Barts Health NHS Trust, Endoscopy Unit, Royal London Hospital, Whitechapel, London, E1 1BB, UK c Nursing and Director of Research, School of Nursing and Midwifery Studies, Cardiff University, Cardiff, CF24 0AB, UK d Royal College of Nursing Chair of Nursing Research, School of Nursing & Midwifery Studies, Cardiff University, Cardiff, CF24 0AB, UK b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 27 August 2012 Received in revised form 31 March 2013 Accepted 2 April 2013
Background: Inflammatory Bowel Disease comprises two major intestinal disorders, Crohn’s Disease and Ulcerative Colitis. When medical management cannot control the disease, surgery is necessary. Having an operation is a major concern for young people with Inflammatory Bowel Disease. Some may try to avoid or defer it. Despite this, afterwards they may have a significant improvement in quality of life. Objectives: The aim of the study was to explore the experiences of young people with Inflammatory Bowel Disease who have had, or are about to have, surgery for their condition. Design and method: Narrative study using semi structured interviews. Participants: Twenty-four young adults aged between 18 and 25 (11 male and 13 female) with Inflammatory Bowel Disease who had undergone or were awaiting surgery from one tertiary referral centre in the United Kingdom. Findings: Key factors that affected young people as they approached and adjusted to an operation were elicited which provided an understanding of this change in their lives from their own perspective. The prospect of having an operation, particularly the fear of a stoma, generated anxiety and concern for many of these young people. As young adults, participants tended to want to be involved in deciding when their surgery should occur and to have their opinions considered. The data revealed the different types of support that were given to these participants, what they found helpful and the function that they served. Gender differences were identified in the nature of support required from partners and in body image concerns. Issues and concerns were identified which can be addressed in clinical nursing practice to prepare young adults for this life changing event. These helped to explain how young people viewed the prospect, impact and experience of surgery. Conclusion: The findings of this study revealed new information relating to the experience of surgery in young adults with Inflammatory Bowel Disease including their perceptions of the event itself, their decision making, their greatest concerns, the support they require and their ways of coping. Since there is little published work regarding how surgery affects this particular patient group, the study should be of interest to specialist nurses who are closely involved in the care of young adults with Inflammatory Bowel Disease. ß 2013 Elsevier Ltd. All rights reserved.
Keywords: Inflammatory Bowel Disease Narrative study Surgery Young people
* Corresponding author. Tel.: +44 02035941781. E-mail address: [email protected] (M. Allison). 0020-7489/$ – see front matter ß 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ijnurstu.2013.04.003
M. Allison et al. / International Journal of Nursing Studies 50 (2013) 1566–1575
What is already known about the topic? A significant number of young people with Inflammatory Bowel Disease will require at least one operation for their condition. Undergoing surgery is a major concern for young people with Inflammatory Bowel Disease, some of whom will try to avoid or delay having an operation. Surgery for Inflammatory Bowel Disease is not always curative and some patients will undergo multiple operations to manage the disease. Many patients who have surgery for Inflammatory Bowel Disease benefit from improved health and a better quality of life. What this paper adds The experience of surgery can have a major impact on the lives of young people with Inflammatory Bowel Disease. Multiple factors and experiences affect young people with Inflammatory Bowel Disease as they try to cope with and adjust to their operations. Young adults desire some control, negotiation and participation in the process of decision making relating to surgery for their Inflammatory Bowel Disease. Parents, partners and friends provide different types of support serving different functions for young adults with Inflammatory Bowel Disease undergoing surgery. The most common strategies used by young adults with Inflammatory Bowel Disease to prevent, or cope with, the stress of facing an operation and in living with the consequences are direct action, advice and information seeking. 1. Introduction Inflammatory Bowel Disease is a chronic intestinal condition that affects about 240,000 people in the UK (British Society of Gastroenterology, 2003; Rubin and Rubin, 2005). Inflammatory Bowel Disease has been described as the most significant chronic disease of childhood and adolescence (Moses et al., 1998) because of the high number of new cases that are diagnosed in this age group. Between 15 and 20% of all new cases of Ulcerative Colitis develop before the age of 20 and 20–25% of patients first develop Crohn’s disease in childhood or adolescence (Rayhorn, 2001). Therefore many young people will learn of their disease and require treatment as they reach adolescence and young adulthood. Whilst advances in medical therapy may control the disease, failure of medical management continues to be the most common indication for surgical intervention (Hwang and Varma, 2008). Childhood onset Inflammatory Bowel Disease appears to be more extensive and progressive than adult disease with higher rates of panenteric involvement, more extensive inflammation and complications (Van Limbergen et al., 2008; Vernier-Massouille et al., 2008; Goodhand et al., 2010). Therefore the need for an operation can arise at a young age and in patients with disease of short or long duration; estimates of the need for surgery in those diagnosed with Crohn’s Disease before adulthood vary
1567
between 28 and 56% and of those with moderate to severe Ulcerative Colitis at diagnosis, 25% require colectomy within 5 years (Freeman, 2004; Gupta et al., 2006; Hymans et al., 1996). 2. Literature review Young people will often need more than one operation to treat the problems that arise in Crohn’s Disease (Galandiuk et al., 2005). Stricture formation and obstruction resulting from ileal inflammation can require resection of the affected bowel (Van Limbergen et al., 2008). Scarring, fibrosis, structuring and sepsis associated with perianal involvement and fistulising disease, if not resolved medically, also call for surgical intervention which may include a temporary or permanent stoma if they persist or recur (Van Dongen and Lubbers, 1996; Schwartz et al., 2001; Pikarsky et al., 2002). Following procedures such as stoma formation and the insertion of draining setons into anal fistulae, some patients may have to cope with changes in body appearance and function for a significant amount of time (Scott and Northover, 1996; Rigueiro and Mardini, 2003). Adolescents and adults alike greatly fear the prospect of surgery for Inflammatory Bowel Disease because of its association with stoma formation where faecal flow is diverted into an external bag fitted to the abdomen (Moser et al., 1995; Daniel, 2002; Savard and Woodgate, 2009). As a consequence they may resist surgery, sometimes struggling on in the presence of severe disease in an effort to defer or avoid an operation with detriment to their body and quality of life (Lynch and Spence, 2007). This widespread patient concern has generated a considerable amount of literature that not only quantitatively delineates the impact of stoma formation in terms of its effect on lifestyle and quality of life but also describes the patient experience and explores the significance and meaning of the changes in body appearance and function imposed by stoma forming surgery (Thomas et al., 1987; White and Unwin, 1998; Persson and Hellstro¨m, 2002; Brown and Randle, 2005; Richbourg et al., 2007; Thorpe et al., 2009; Savard and Woodgate, 2009). There is a growing body of literature that explores the changes which occur in people’s lives as a result of surgery for Inflammatory Bowel Disease. Long term improvements in health related quality of life for the majority of patients after ileoanal pouch (IAPP) surgery have been documented (Fazio et al., 1999; Thirlby et al., 2001). Patients have described their transition from having the temporary ileostomy as a journey from illness to health and a return to normality (Berndtsson et al., 2004). However, poor pouch function, food restrictions and physical limitations following the operation adversely affect quality of life (Fazio et al., 1999; Ha¨user et al., 2004; Coffey et al., 2002). One paper described the experiences of young adults four years after permanent stoma formation who recalled struggles related to their decision to undergo stoma surgery and distressing emotions centering on the stoma but also perceived that they now focused on living with a new perspective (Sinclair, 2009). However, the transition patients undergo after surgery as they adjust to changes in their body and its function has never been specifically
1568
M. Allison et al. / International Journal of Nursing Studies 50 (2013) 1566–1575
investigated before so there is a lack of knowledge about what helps and hinders this process. Positive adjustment to surgery might be more difficult for women than for men. In one qualitative study women’s experiences of having a temporary stoma as part of IAPP were explored. The findings revealed that a number were determined to maintain the pouch at any cost due to the traumatising effect of having a stoma, the changes in their body and the memory of pain (Notter and Bernard, 2006). Surgery other than IAPP may also have a negative impact on body image, relationships and sexual function in women; single women appear to have a poorer image of themselves after an operation than married women or those in a relationship (da Silva et al., 2008; Muller et al., 2010). However, in previous quantitative research, young people with Inflammatory Bowel Disease aged 18–25 are rarely considered as a specific group. They are viewed as adults and incorporated into samples that extend from early adulthood into old age. Since demographic data reveals that they represent only a small proportion of the total sample and results are usually not stratified according to age, it is difficult to determine whether the findings are truly representative of their situation or their views. In terms of psychosocial development, ways of thinking and experience, emerging adulthood is now recognised as a distinct stage in life (Arnett, 2000) and it is reasonable to conclude that their perceptions and concerns are different from those of older adults. Several qualitative studies have focussed on young adults’ perceptions of living with Inflammatory Bowel Disease (Lynch and Spence, 2007; Daniel, 2002; Savard and Woodgate, 2009). However, the experience of surgery has not previously been explored in depth so there is an incomplete understanding of what the issues are for young people who face the prospect of surgery. This limits the help and support that they can be given when they are faced with the possibility of an operation. In summary, there is little information pertaining to the experience of surgery in young adults with Inflammatory Bowel Disease. More specifically, we do not know how it is perceived, what factors affect their decision making, how they cope and adjust afterwards and what factors affect this process. 3. Aim and objectives The aim of the study was to explore the experience of young people with Inflammatory Bowel Disease who faced the prospect of, or had undergone, surgery for their condition. The objectives were to elicit the changes and responses that young adults with Inflammatory Bowel Disease exhibited when they were faced with or had surgery for their condition and to describe the factors and experiences that affected them as they tried to cope with and adjust to their operation. 4. Methods 4.1. Study design A qualitative investigation was undertaken to reveal in depth information about perceptions, concerns, motiva-
tions, needs and responses and thus provide the descriptive data necessary for a better understanding of these young people’s experiences as they underwent surgery for Inflammatory Bowel Disease. One of the significant ways that individuals make sense of and give meaning to their experience is to organise them in narrative form (Mishler, 1986). A narrative approach incorporating in depth interviews was chosen as an appropriate strategy for collecting the type of data required in this study as it encourages participants to tell their stories in their own words. As young adults, the participants in this study had the necessary skills, including recall, insight, interest, attention span and life experiences to recount their personal stories related to surgery and Inflammatory Bowel Disease (Haglund, 2004). 4.2. Sample Patients aged 18–25 who attended the adolescent and young adult clinic at a single tertiary referral centre in the UK were asked to participate in semi structured interviews for the purpose of exploring their experience of surgery. The Consultant Gastroenterologist initially identified suitable potential participants who met the selection criteria from the patient database. The researcher used purposive sampling to determine which patients to approach. These patients were provided with written information about the study and then contacted a week later to ascertain their willingness to participate and arrange a date for interview if they agreed. The written information included details of the study and its purpose, the interview process and the researcher’s details and role. The final sample size of 24 participants was determined during data analysis; when no new information or insights emerged, recruitment stopped. Only one patient declined to be interviewed because he felt too unwell to participate. 4.3. Selection criteria Patients were eligible to take part if they had a confirmed diagnosis of Inflammatory Bowel Disease and had had surgery for their condition or had been referred to the Colorectal Surgical team for an opinion. Selection criteria were deliberately broad to ensure that participants within the appropriate age group of both sexes, from different cultures and backgrounds and at different stages in their experience of possible surgery were included. 4.4. Data collection Interviews took place over a period of 10 months. All interviews were conducted in a neutral, private setting within the hospital and away from the Gastroenterology clinic, usually before or after a routine clinic appointment. A small number of participants arranged an appointment for interview at another time and three others chose to be interviewed when they were hospital inpatients following surgery. The remainder were interviewed several months to two years following their last operation. Written consent was obtained from each participant immediately prior to interview, during which they gave
M. Allison et al. / International Journal of Nursing Studies 50 (2013) 1566–1575
permission for the interview to be tape recorded. The first author (MA) conducted all the interviews, which lasted from 30 min to 1.5 h. Careful consideration was given to the research objectives and how they could be transformed into suitable questions that would elicit sustainable stories (Wengraf, 2001). A broad interview guide with open questions was developed with advice from an academic supervisor experienced in conducting health care research with adolescents and young adults (Appendix). Similar guides have previously been used in research with young people to help focus their thoughts, aid the narrative flow and facilitate a comprehensive exploration of their experiences (Kynga¨s, 2003). In practice most participants were eager to tell their stories and in doing so provided information pertaining to many of the issues within the schedule without directly being asked. All participants were offered the opportunity to review the interview transcript and all but two declined, most stating that they were satisfied that the information provided would be recorded accurately or that they would not wish to remove information that they had shared. 4.5. Data analysis Interviews were transcribed verbatim and two methods used to organise and reduce the raw data in the manuscripts. The first was storymapping (Richmond, 2002) in which a grid was developed, the vertical axis of which was labelled with 10 categories that captured all the aspects of their lives the participants had discussed such as ‘the surgery’ ‘my body’ ‘family’ ‘self’. The horizontal axis was divided into ‘past experiences, present experiences’ and ‘future intentions’. This provided a means of understanding changing thoughts, feelings and behaviour over time in key areas of participants’ lives by inserting their own phrases into the appropriate cells on the grid (Table 1). The second technique used to reduce and organise the data was restorying (Cresswell, 2008), whereby repetition was removed and the participants’ storymaps were synthesised into an account that told, still in their own words, of their experience of surgery and its effect on their lives. These stories grouped together content from related categories in the storymaps and facilitated the emergence of the final key themes: perceptions of surgery, self, support and coping strategies.
Table 1 Storymap to organise transcript data. Past experiences Self Disease The surgery Health professionals Family Friends/other people Intimate relationships Appearance College/Work Activities
Present experiences
Future intentions
1569
4.6. Ethical approval Ethical permission was given by the local research ethics committee and local approval by the hospital research and development department. Because it was anticipated that some young people could experience discomfort or distress when recalling events, thoughts or feelings related to their condition arrangements were made to elicit support from appropriate health care team members. This was provided for one female participant. 5. Findings 5.1. Participants’ characteristics Of the 24 young people interviewed, 11 were male and 13 female. All were aged from 18 to 25, with the majority in their early twenties. Ethnicities represented were: 11 White, 8 Asian British, 5 Black British. Seventeen had Crohn’s Disease and 7 Ulcerative Colitis. Eleven were working, 9 were at college or university, of whom 2 had part time jobs. Four had no occupation at the time of interview. Twelve were in steady heterosexual relationships, and three of these had plans to marry. Twelve were currently single, including 5 who had not had a close relationship since surgery. Only one female participant was a parent. 5.2. Participants’ experience of surgery One participant was waiting for his first operation. One had refused surgery. Of the remaining 22 participants, four had first had surgery as a child, all but one of whom had a permanent stoma. Eight male patients had undergone major abdominal surgery, with a total of 15 procedures between them. One had had three operations, 5 had undergone two, and 2 had undergone 1. Two were living with a stoma at the time of interview. Three had had a stoma reversed, two of whom were living with an ileoanal pouch. Four operations had been done laparoscopically. All 13 females had experienced surgery. Six had undergone more than one operation. The 8 who had abdominal surgery all had open procedures. Five of these were currently living with a stoma and 1 with an ileoanal pouch. Seven females had surgery for perianal disease, 4 of which had had more than one procedure. Five currently had a seton stitch in situ. Four of the seven had also had major abdominal surgery. Two of these were among those with a stoma. 5.3. The surgery 5.3.1. Perceptions of surgery Trigger events, timing and control were often closely associated dimensions in participants’ stories and those that were mentioned most frequently. Sometimes worsening symptoms over a variable period of time enabled patients to acknowledge gradually that surgery was the only solution. Some initially resisted an operation but reached a turning point when they decided they could no longer endure their symptoms or continue living as they were.
1570
M. Allison et al. / International Journal of Nursing Studies 50 (2013) 1566–1575
Definite trigger events such as hospitalization for uncontrolled disease, overwhelming symptoms or acute complications of disease (such as perianal abscess formation, sepsis and toxic megacolon) precipitated emergency admission to hospital closely followed by surgery for others. Several participants described negotiating with the medical team about the timing of their operation, most commonly because they wanted it to take place when it would least interfere with college or work, even when their surgery was deemed urgent. Lack of control in managing the timing of surgery occurred when procedures had to be carried out as an emergency or because of the seriousness of their condition but where there was no urgency, there was time consider and prepare for the event. The dimension of control as it was experienced, perceived and expressed by the participants was complex. All were in a situation where the disease itself and its symptoms could no longer be managed by medication. The only remaining treatment choice was surgery so there was little control whether they should have an operation or not. Most were dependent on the expert opinion, knowledge and advice of their physicians and surgeons about their disease and the right course of action for its management. However four participants did not accept medical advice and exercised personal control by refusing to have surgery. One knew that he had not been compliant with his medication but had not told his physician. Another with a long history of previous surgery refused any further surgical procedures, trusting her own experience more than the advice of her doctors. The two remaining patients had been younger teenagers when surgery was first suggested. Both described situations of conflict and distress where they had argued with doctors; in the end neither could be persuaded: ‘They booked me in to have it done in the December. I went you’re joking. I ain’t having it and I didn’t. Obviously I didn’t go.’ (F6, aged 21) As they recovered from major surgery, the majority of the young people experienced a welcome change from the role as a sick person where life was dominated by considerations and disruptions related to their illness and its treatment, to the feeling of being well. They looked forward to being able to do the things that their healthy peers could do such as working, studying, finding a partner, without the constraints and difficulties associated with the symptoms of uncontrolled disease. They appreciated the increased independence that surgery gave them. Some also expressed a sense of wonder at the changes in themselves and their situation. One participant had become a mother. Her entry to this role had been difficult with a premature delivery followed by a pelvic abscess that required an ileostomy operation: ‘It just went downhill for me. . .I suffered from depression. . .just felt so low’ (F7, aged 23) There were also differences in the way that participants with Ulcerative Colitis and Crohn’s Disease perceived the duration of surgery. Those with Ulcerative Colitis knew
that the surgery was curative and that their stomas were temporary. Once they had adjusted to the ileoanal pouch they could go on to live their lives free from symptoms. Participants with Crohn’s appreciated the improvement but also had concerns about whether it would last. They hoped that the disease would not return and were vigilant about any symptoms such as abdominal pain that might signal a recurrence. Surgery for Crohn’s could also bring additional problems; after initial surgery 10 years previously one participant had never known what it was like to be completely healed. The majority of females who underwent surgery for perianal abscesses and fistulation with seton stitch insertion, particularly if they had had multiple procedures or continuing surgical complications, expressed frustration about their lives. The lack of definitive treatment impacted negatively on a desire to be ‘normal’: ‘It’s been six years of having abscesses. . .never being normal, having setons. . . I want it sorted’ (F11, aged 22) The other big issue for participants was having a stoma and knowing whether it would be temporary or permanent. With this knowledge one participant who had previously refused an operation finally consented four years later: ‘I just decided just get on and do it and that was cause he said he’d reverse it. Even if it was that bad he’d reverse it anyway’ (M3, aged 18). In common with others whose stoma was temporary this young man chose to restrict his life until it was reversed. The main way that both male participants with Ulcerative Colitis awaiting stoma reversal did this was a decrease in dating. There was often no definite time for reversal for patients with Crohn’s Disease which some had found frustrating. Others, however, elected finally to keep the stoma: ‘I’m so happy with the way I can live my life at the moment that the idea of having another operation and the risk of uncertainty, I just don’t think it’s worth it.’ (F9, aged 21) Those who had more than one operation had mixed experiences. Predictably this also influenced their views about further surgery. Participants who had had positive experiences were positive about going into another operation even if it was for disease recurrence. However previous difficult experiences gave rise to anxiety and concern about whether this time would be the same: ‘I was. . .so upset for days when I found out they were going to do it again. . .When you know what’s gonna happen, it’s scary’. (F1, aged 19) Participants’ assessments of the surgery preoperatively were individual and dependent on the factors described previously. Where there was time before surgery perceptions could change, particularly if symptoms increased or young people utilised various strategies to help them understand and cope with the forthcoming operation. Fears and concerns preoperatively related mainly to the surgery itself especially when this was a new and unknown
M. Allison et al. / International Journal of Nursing Studies 50 (2013) 1566–1575
experience. However surgery was regarded as a benefit by those who considered their current situation and how it could be improved by an operation. Some were more active in this process than others; those who had thought about how surgery could make a positive change in their lives, gathered information and prepared themselves tended to describe less difficult postoperative experiences. Self insight into their ability to cope, drawing on personal strengths and receiving positive feedback from others following previous surgery also raised confidence levels and helped with preparation when a further operation was anticipated: ‘Even though it was a major op I wasn’t nervous. The first operation, that made me a lot stronger in myself. . .I was a lot more confident’ (M2, aged 18) 5.3.2. Support All participants appreciated the care and support given by their family, especially parents, both during their illness and before and after surgery with descriptors such as ‘always there for me’, ‘really supportive’ and ‘brilliant’. By being there during the hospital stay and in the early stages of recovery families provided a constant and reassuring presence and helped participants to cope when they were psychologically fragile. It was usual for the whole family to rally round in support and one patient described a wider Christian community family that sustained him. Parents who had a supportive rather than over protective attitude and encouraged their child to live normally were perceived positively as was their use of ‘tough love’ or straight talking to prevent their children from feeling too sorry for themselves: ‘My mum. . . made me a bit stronger. . .she used to, not in a horrible way. . .say to me there’s people worse off than you’ (F7, aged 23) Parental and family support was mainly nurturing in the acute phases of illness and surgery in that just being there as a loving and caring presence was perceived as helpful. Parents also had a facilitative role in assisting their children to cope with the surgery and its effects. They did this by offering practical help, sharing experiences (such as not eating when they were nil by mouth, or discontinuing previously shared activities until they could participate again); having a positive attitude and responding appropriately to wellness and the freedom which their recovering children desired by decreasing vigilance; practical assistance and resuming normal family relationships. Participants were aware that their parents sometimes found it difficult when they could not actively help their child and also to let go when they wanted more independence. Parental overprotection was perceived negatively: ‘Since the operation I’ve had my parents on my case. They’ll be up in the morning, making my breakfast. . .now have my lunch on time and even my dinner on time. . .my mother saying this, my grandmother saying this. . . (M9, aged 23) Most participants who talked about friendships all described positive experiences although there were some
1571
differences in the type of support sought from and given by young men and young women. Young women were more open in their disclosures about their illness and surgery. Before and after the operation they expected and received emotional support from their female friends and also that they would provide practical help. Young men tended to be more selective and less open in disclosing their illness or details of their surgery than the young women. Those who made new friends at university did not disclose any information until it could no longer be avoided. Friends were perceived as encouraging when told about impending surgery. However their key role after surgery appeared to be a normalising one; participants described how in the company of supportive friends they were treated the same and had opportunities to do the things that their peers did. Their friends did not ask much about or dwell on their surgery, sometimes because they simply forgot. Male participants who talked about support in their intimate relationships looked for and received different support from female participants. Young men wanted practical support following the operation such as help managing a stoma. This was sometimes described as an extension of the role a female partner had previously undertaken such as managing medicine compliance and diet. However, ‘overvigilance’ was perceived negatively and could lead to friction. Young women wanted and received comfort, emotional support and reassurance. Male partners also used humour to make them feel better and to dissipate worries: ‘If you’re not. . .having a great day or whatever then he comes home from work and. . .just makes me laugh and that, just gives me a cuddle or whatever and it really helps’ (F3, aged 23). Participants perceived their physicians as supportive in that they would work with them to find an effective treatment but they did not tend to seek emotional support from medical staff. It was appreciated when given but they did consider this to be the doctor’s role. What they did expect was that they would support them by continuing to treat them regardless of the outcome. They also wanted medical staff to acknowledge their feelings, opinions and concerns. Where this did not occur there could sometimes be open conflict. Because they had lived with the illness for a long time some participants felt that they were the experts on their own condition and therefore had a valid contribution to make to decision making. Participants also commented that surgeons had a different approach from their physicians: ‘If you go to see a surgeon they have something that they’re going to do and they’re such straightforward people. They. . .don’t make anything seem nice or flowery or everything’s going to be fine. . .This is what we’re gonna do. . . we might have to do this but only in x per cent of cases’ (F4, aged 25). The member of the health care team who was considered appropriate for providing emotional support was the specialist nurse. They provided continuity of care when participants were outpatients and at home. It was to her that they first turned for reassurance and help:
1572
M. Allison et al. / International Journal of Nursing Studies 50 (2013) 1566–1575
‘She’s excellent. . .I’d be lost without her she’s amazing whenever there’s a problem literally I ring her and she meets me straight away’. (F7, aged 23) 5.3.3. Self Changes in bodily appearance after surgery upset young women most who described concerns about their physical attractiveness due to scarring, an uncontrolled bowel and, with a stoma, how their clothing choices were affected. Young men seemed more concerned about their bodies after surgery only when they had a stoma. They did not pay scars much regard. When the stoma was temporary young people limited their lifestyles while they waited out the time until it was reversed. However most did adapt over varying periods of time and they managed to do this while sometimes expressing strong feelings of antipathy towards the stoma. Those whose stomas were present for a long time described a gradual process of adjustment during which stoma related concerns decreased. However the key factor in adjustment was their ability to see the positive changes that the stoma had brought to their lives: ‘I did adjust to it. . .cause at the end of the day. . .I’m healthy. . .and I’m well because of it’ (M2, aged 18). The stoma was a hidden difference. Disclosing this to others, especially potential partners, was a key concern. However these young people accepted the stoma much more easily than they had anticipated. Some were suitable for reconstructive surgery but decided against this as they did not want to risk the life they had with a stoma for the uncertain outcome of another operation. Having the stoma closed was a significant milestone in the lives of those with Ulcerative Colitis. They took the adjustments necessary for living with an ileoanal pouch in their stride. Once they had physically recovered from the surgery they described lives similar to those of healthy peers. Young women with perianal surgery and seton insertion described similar problems before and after surgery: pain and constant malodorous leakage which could only be contained with pads. In addition they were stuck in a cycle of recurrent disease and multiple operations which was hard to adjust to. All but one stated they wanted the seton removed: ‘It really makes you feel unattractive. . .your confidence is down and your self esteem goes down’ (F1, aged 19). Young people of both sexes had concerns about their sexuality. These were much greater for young women who worried about conception, pregnancy, delivery and raising a child. All these young people had lived through a great deal in their lives. Some felt these experiences had affected their personality. Others described low periods with the illness, during surgery or at times of crisis but for most they were transient. All but four used the word ‘normal’ in relation to themselves. Some referred to it multiple times; they were sensitive to the fact that they looked normal to other people or expressed the wish to ‘be normal’ or to live a normal life unaffected by their illness and improved by surgery. Mostly these young adults coped well with these difficult times. Several described qualities in themselves that they felt had enabled them to do this, such as ‘bravery’,
‘determination’ and ‘commitment’. Others recognised that having the surgery had changed them and they had developed more inner strength or resilience. Those who had had multiple surgery and ongoing problems expressed pessimism about the future. Other participants described a positive attitude to life which consisted of carrying on with things, not worrying excessively and not letting their lives be circumscribed by illness. After surgery, even when it was not curative, participants felt they had got their lives back. Several described how their world had expanded, they had ambitions and made plans for the future: ‘It’s made a huge difference in my life definitely. . .I want to settle down. Five years time . . .I plan to get married. . .college next year. . .crack on with it really’ (M10, aged 20) 5.3.4. Strategies Participants described a wide variety of strategies they used to prevent or cope with the stress of facing an operation and in living with the consequences. Some used multiple strategies to help them. Those used most often were: direct action, advice and information seeking, making positive comparisons, having the right attitude, ignoring the situation and emotional release. ‘Getting on with it’ was the commonest strategy, described by over half the participants, to deal with situations such as coping with pain, adjusting to symptoms, learning how to live with an Iileoanal pouch and a stoma. Similar strategies were expressed as ‘dealing with it’ and ‘sorting it out’. ‘Getting on with it’ for participants with a stoma encompassed three elements – self reliance, direct action and not dwelling on, or making an issue of things, whether they were part of everyday experience or an unexpected problem. Participants with Crohn’s disease also used this phrase to describe how they coped with symptom recurrence and the knowledge that this was something that they could not influence. Participants sought and obtained information from a variety of sources and for a number of reasons – to help them to understand the situation, to reduce anxiety, for reassurance and to assist in decision making before an operation. Before an operation was the time when participants felt a need to find out about a situation they had not previously experienced so they could know what was going to happen to them. Common sources of information included the Internet and other people who had had surgery: ‘The main things that stopped me being afraid of it was doing research on the operation itself and just reading. . .testimonials about people that have had it done in the past. . .Mostly it’s 80% positive things that people say about it and their lifestyle after the operation – it’s much better, so that has made me feel very reassured’ (M1, aged 23). Health professionals were the other major resource. They were asked for advice about planned surgery, worrying symptoms and treatment. Positive comparisons were used widely. Participants made comparisons between their state of health and what they could do before and after surgery and between themselves and other people whom they perceived as
M. Allison et al. / International Journal of Nursing Studies 50 (2013) 1566–1575
being worse off. In considering life before and after surgery participants thought of the event as having saved their lives, restored their health and improved the quality of their lives. Three participants recognised that not adhering to their medication regimes might have contributed to the need for surgery. Some practised ignoring and avoidance towards worsening symptoms: ‘I went for two years not showing them my bum, not talking about anything and it didn’t get me anywhere. . .It got me into a situation I couldn’t get out of’ (F6, aged 21) Participants often described how important it was to have the right attitude towards surgery and how a positive attitude helped them through sometimes difficult times. Many of these comments related to personal efforts they needed to make to help themselves cope with their experiences. They demonstrated an emotional maturity they had either developed in the time before surgery or as a direct result of it. Keeping rational thoughts, avoiding panic and stress were themes repeated by other participants: ‘Just keep thinking positively. . .If you think about things rationally you’ll get through a lot faster’ (M6, aged 21) There was a difference in the way that male and female participants used emotional release. Young men described single episodes associated with specific events such as venting frustration when not being listened to or the development of a postoperative complication that slowed recovery. The young women who described emotional outbursts used them repeatedly. Although they occurred mainly with family and friends they could also do this in the presence of health professionals. Less commonly used strategies included distraction which served to help some participants to cope when they were feeling low. ‘Wishful thinking’ was evident in three participants who described wishing that things were different and two others who expressed the desire to be other than they were. A few resigned themselves to certain things about which they felt there was nothing they could do such as the inevitability of pain after an operation. Strategies used by individual participants included self blame and putting on a brave face. One young woman with a stoma uses dress and appearance to enhance her self esteem: ‘I go out in the skimpiest outfits. . .and I think that makes it a lot easier. . .people look at me and speak to me and think I’m normal’ (F6, aged 21) 6. Discussion This study is the first qualitative investigation into the prospect, impact and experience of surgery as it affects young adults with Inflammatory Bowel Disease. The strength of this study is that it elicits key factors that affect young people as they approach and adjust to an operation. It also provides an understanding of this change in their lives from their own perspective. The current study indicates that the prospect of having an operation, particularly the fear of a stoma, generated
1573
anxiety and concern. These findings are congruent with those of previous researchers (Irvine, 2004; Moser et al., 1995). The data revealed that these young adults mainly sought information from the Internet and from others who had previous experience of surgery. YouTube and Internet chat rooms provide a different sort of information from the traditional written information booklets which are given out to patients preoperatively. Health care professionals need to be aware of the resources that are available to be able to help patients access those that are reliable and accurate in their depiction and to assist them to process the wide variety of information to which they have independent access. Several interesting findings also emerged in relation to the issue of control, negotiation and participation in the process of decision making relating to surgery. As young adults the participants tended to want to be involved in deciding when surgery should occur and to have their opinions considered. They appreciated those surgeons who explained the situation and the operation so that they could understand. They responded negatively to those who ‘knew best’ and did not provide opportunities for discussion and negotiation. This has implications for the health care team in the manner in which they engage with young people prior to surgery; evidence from this study suggests that if appropriate dialogue does not occur, they may refuse necessary surgery. The data also reveals the different types of support that were given to these participants, what they found helpful and the function that they served. They depended on nurturing parenteral support whilst physically recovering from an operation. They appreciated encouragement, less vigilance and the freedom to regain independence as they returned to health. Peer friendships were significant in this process. These had a normalising effect in that participants were treated the same as their healthy friends. There were gender differences in the support that participants expected from partners; young women sought comfort and emotional support and appreciated partners who lightened the situation with humour. Male participants wanted practical help. In common with other published work on the outcomes of ileoanal pouch surgery for Ulcerative Colitis the findings revealed that the four young adults in this study had a positive result, resuming normal lives and feeling well (Berndtsson et al., 2004; McGuire et al., 2007; Carmon et al., 2003). Stoma formation, dreaded by many participants preoperatively, was also usually adjusted to over time. Those whose stoma was permanent or who had elected to keep it reported resumption of most activities and a return to health. This finding has also been noted in previous studies (Camilleri-Brennan et al., 2003; Savard and Woodgate, 2009). The young women in this study who underwent abdominal surgery, none of which was performed laparoscopically, reported more concerns with body image related to scarring and/or the presence of a stoma than the young men. They were also more worried about the consequences of both abdominal and perineal surgery on sexuality, including their attractiveness to actual or potential partners, fertility, pregnancy and childbirth. There is some evidence from work in the wider
1574
M. Allison et al. / International Journal of Nursing Studies 50 (2013) 1566–1575
adult population that women are more affected by these issues following surgery for Inflammatory Bowel Disease (Muller et al., 2010; da Silva et al., 2008). This warrants further investigation. The data suggests that some young women with perianal disease who undergo surgery may have a particularly difficult time. A draining seton controls sepsis but constant malodorous leakage appears to have a negative effect on body image and self esteem and to be difficult to adjust to. There is very little previous research on the effects of this surgery on adults with Inflammatory Bowel Disease. Finally, the data also reveal that, for young adults, preparing for and recovering from surgery is a challenge and some may have a difficult and prolonged experience. Therefore nurses who provide care for these patients have a key role to play in providing the individualised emotional and practical support they require to adjust to surgery, and to help them to utilise their individual strengths and positive coping strategies to fully attain the improved quality of life that an operation is intended to promote. 7. Study limitations The findings may be limited by the inclusion of only one male patient with experience of perianal surgery. Therefore it was not possible to draw any conclusions as to whether there are gender differences in the experiences of young adults who have surgery in this sensitive area Further study should be undertaken to investigate this. In addition, single interviews may not have fully captured an individual’s changing perceptions especially when they retrospectively recounted events that occurred several years previously. However there is sufficient information within this study to provide a useful account of the impact of surgery on young people who have Inflammatory Bowel Disease. 8. Conclusion The findings of this study revealed new information relating to the experience of surgery in young adults with Inflammatory Bowel Disease including their perceptions of the event itself, their decision making, their greatest concerns, the support they may require and their ways of coping. Since there is little published work regarding how surgery affects this particular patient group, the study should be of interest to specialist nurses and other professionals who are closely involved in the care of young adults with Inflammatory Bowel Disease as it adds to the body of knowledge in the field. It also provides nurses with information that they can use to be able to provide appropriate preoperative counselling and helpful and effective care for their own patients who find themselves in a similar situation. Acknowledgement This research was funded by a grant from the charity Crohn’s and Colitis UK.
Conflict of interest: None declared. Funding: charity Crohn’s and Colitis UK (a UK charity). Funders not involved in research activity. Ethical approval: City and East London REC 09/H0704/26. Appendix A. Appendix: Interview schedule Before When you first heard that you might have to have surgery how did you feel about that What main concerns did you have How did you think your life might be affected by the surgery How did you come to the decision that you would go ahead with the surgery After What changes were there is your life after you had the surgery What do you think has been the impact of this surgery on your everyday life How do you feel about your body after the surgery How do you feel about yourself after the surgery Sometimes after an operation relationships with other people can change. Has this been your experience What things in your life helped you to cope after your surgery Sometimes there are events or experiences related to surgery that are turning points in people’s lives. Can you remember any of these happening to you What would you say to somebody else facing similar surgery for their Inflammatory Bowel Disease Is there anything else you think I need to know References Arnett, J., 2000. Emerging adulthood: a theory of development from the teens through the twenties. American Psychologist 55, 469–480. Berndtsson, I., Oresland, T., Hulten, L., 2004. Sexuality in patients with ulcerative colitis before and after restorative proctocolectomy: a prospective study. Scandinavian Journal of Gastroenterology 39 (4) 374–379. British Society of Gastroenterology, 2003. Guidelines for the Management of Inflammatory Bowel Disease in Adults. BSG, London. Brown, H., Randle, J., 2005. Living with a stoma: a review of the literature. Journal of Clinical Nursing 14, 74–81. Camilleri-Brennan, J., Munro, A., Steele, R., 2003. Does an ileoanal pouch offer a better quality of life than a permanent ileostomy for patients with ulcerative colitis? Journal of Gastrointestinal Surgery 7 (6) 814– 819. Carmon, E., Keidar, A., Ravid, A., Goldman, G., Rabau, M., 2003. The correlation between quality of life and functional outcome in ulcerative colitis patients after proctocolectomy ileal pouch anal anastomosis. Colorectal Disease 5 (3) 228–232. Coffey, J.C., Winter, D., Neary, P., Murphy, A., Redmond, H., Kirwan, W., 2002. Quality of life after ileal pouch-anal anastomosis: an evaluation of diet and other factors using the Cleveland Global Quality of Life instrument. Diseases of the Colon and Rectum 45, 30–38. Cresswell, J., 2008. Narrative research designs. In: Educational Research: Planning Conducting and Evaluating Quantitative and Qualitative Research. 3rd ed. Pearson Education, Inc., Upper Saddle River, NJ, pp. 511–550. Daniel, J., 2002. Young adults’ perceptions of living with chronic Inflammatory Bowel Disease. Gastroenterology Nursing 25 (3) 83–94. da Silva, G., Hull, T., Roberts, P., Ruiz, D., Wexner, S., Weiss, E., Nogueras, J., Daniel, N., Bast, J., Hammel, J., Sands, D., 2008. The effect of colorectal surgery in female sexual function, body image. Self-esteem and
M. Allison et al. / International Journal of Nursing Studies 50 (2013) 1566–1575 general health: a prospective study. Annals of Surgery 248 (2) 266– 272. Fazio, V., O’Riordain, M., Lavery, I., Church, J., Lau, P., Strong, S., Hull, T., 1999. Long-term functional outcome and quality of life after stapled restorative proctocolectomy. Annals of Surgery 230 (4) 575– 584. Freeman, H., 2004. Comparison of long-standing paediatric onset and adult onset Crohn’s disease. Journal of Paediatric Gastroenterology and Nutrition 39, 183–186. Galandiuk, S., Kimberling, J., Al-Mishlab, T., Stromberg, A., 2005. Perianal Crohn’s disease: predictors of need for permanent diversion. Annals of Surgery 241 (5) 796–802. Goodhand, J., Dawson, R., Hefferon, M., Tshuma, N., Swanson, G., Wahed, M., Croft, N., Lindsay, J., 2010. Inflammatory Bowel Disease in young people: the case for transitional clinics. Inflammatory Bowel Diseases 16 (6) 947–952. Gupta, N., Cohen, S., Bostrom, A., Kirschner, B., Baldassano, R., Winter, H., Ferry, G., Smith, T., Abramson, O., Gold, B., Heyman, M., 2006. Risk factors for initial surgery in paediatric patients with Crohn’s disease. Gastroenterology 130 (4) 1069–1077. Haglund, K., 2004. Conducting life history research with adolescents. Qualitative Health Research 14, 1309–1319. Ha¨user, W., Dietz, N., Steder-Neukamm, U., Janke, K., Stallmach, A., 2004. Biopsychosocial determinants of health-related quality of life after ileal pouch anal anastomosis for ulcerative colitis. Inflammatory Bowel Diseases 10 (4) 399–407. Hwang, J., Varma, M., 2008. Surgery for Inflammatory Bowel Disease. World Journal of Gastroenterology 14 (17) 2678–2690. Hymans, J., Davis, P., Lere, T., Justinich, C., Markowitz, J., 1996. Clinical outcome of ulcerative colitis in children. Journal of Paediatrics 129, 81–88. Irvine, E., 2004. Review article: patients’ fears and unmet needs in Inflammatory Bowel Disease. Alimentary Pharmacology and Therapeutics 20 (Suppl.) 54–59. Kynga¨s, H., 2003. Patient education: perspective of adolescents with a chronic disease. Journal of Clinical Nursing 12, 744–751. Lynch, T., Spence, D., 2007. A qualitative study of youth living with Crohn’s disease. Gastroenterology Nursing 31 (3) 224–230. McGuire, B., Brannigan, A., O’Connell, P., 2007. Review: Ileal pouch - anal anastomosis British Journal of Surgery 94 (7) 812–823. Mishler, E., 1986. Research Interviewing: Context and Narrative. Harvard University Press, Cambridge, MA. Moser, G., Tillinger, W., Sachs, G., Genser, D., Maier-Dobersberger, T., Spiess, K., Wyatt, J., Vogelsang, H., Lochs, H., Gangl, A., 1995. Disease related worries and concerns: a study on outpatients with Inflammatory Bowel Disease. European Journal of Gastroenterology and Hepatology 7 (9) 853. Moses, P., Moore, B., Ferrentino, N., Bensen, S., Vecchio, J., 1998. Inflammatory Bowel Disease: 1 origins, presentation and course. Postgraduate Medicine 103 (5) 77–84. Muller, K., Prosser, R., Bampton, P., Mountifield, R., Andrews, J., 2010. Female gender and surgery impair relationships body image, and sexuality in Inflammatory Bowel Disease. Inflammatory Bowel Diseases 16, 657–663. Notter, J., Bernard, P., 2006. Preparing for loop ileostomy surgery: women’s accounts from a qualitative study. International Journal of Nursing Studies 43, 147–159.
1575
Persson, E., Hellstro¨m, A., 2002. Experiences of Swedish men and women 6–12 weeks after Ostomy surgery. Journal of Wound, Ostomy and Continence Nursing 29 (2) 103–108. Pikarsky, A., Gervaz, P., Wexner, S., 2002. Perianal Crohn’s disease: a new scoring system to evaluate and predict outcome of surgical intervention. Archives of Surgery 137, 774–777. Rayhorn, N., 2001. Treatment of Inflammatory Bowel Disease in the adolescent. Journal of Infusion Nursing 24 (4) 255–262. Richbourg, L., Thorpe, J., Rapp, C., 2007. Difficulties experienced by the ostomate after hospital discharge. Journal of Wound, Ostomy and Continence Nursing 34 (1) 70–79. Richmond, H., 2002. Learners’ Lives: A Narrative Analysis. The Qualitative Report, Vol. 7, No. 3 Retrieved 11.8.2012, from http://www.nova.edu/ ssss/QR/QR7-3/richmond.html. Rigueiro, M., Mardini, H., 2003. Treatment of perianal fistulising Crohn’s disease with infliximab alone or as an adjunct to examination under anaesthesias with seton placement. Inflammatory Bowel Disease 9, 98–103. Rubin, H., Rubin, I., 2005. Qualitative Interviewing: the Art of Hearing Data, 2nd ed. Sage, Thousand Oaks. Savard, J., Woodgate, R., 2009. Young peoples’ experience of living with ulcerative colitis and an ostomy. Gastroenterology Nursing 32 (1) 33– 41. Schwartz, D., Pemberton, J., Sandborn, W., 2001. Diagnosis and treatment of perianal fistulas in Crohn’s disease. Annals of Internal Medicine 135, 906–918. Scott, H., Northover, J., 1996. Evaluation of surgery for perianal Crohn’s fistulas. Diseases of the Colon and Rectum 39, 1039–1043. Sinclair, L., 2009. Young adults with permanent ileostomies: experiences during the first 4 years after surgery. Journal of Wound, Ostomy and Continence Nursing 36 (3) 306–316. Thirlby, R., Sobrino, M., Randall, J., 2001. The long-term benefit of surgery on health-related quality of life in patients with Inflammatory Bowel Disease. Archives of Surgery 136 (5) 521–527. Thomas, C., Madden, F., Jehu, D., 1987. Psychological effects of stomas: 1. Psychosocial morbidity one year after surgery. Journal of Psychosomatic Research 31 (3) 311–316. Thorpe, G., MacArthur, M., Richardson, B., 2009. Bodily change following faecal stoma formation: qualitative interpretive synthesis. Journal of Advanced Nursing 65 (9) 1778–1789. Van Dongen, L., Lubbers, E., 1996. Perianal fisulas in patients with Crohn’s disease. Archives of Surgery 121, 187–1190. Van Limbergen, J., Russell, R., Drummong, H., Aldhous, M., Round, N., Nimmo, E., Smith, L., Gillett, P., McGrogan, P., Weaver, L., Bisset, W., Mahdi, G., Arnoot, I., Satsangi, J., Wilson, D., 2008. Definition of phenotype characteristics of child-onset Inflammatory Bowel Disease. Gastroenterology 135, 1114–1122. Vernier-Massouille, G., Balde, M., Salleron, J., Turck, D., Dupas, J., Mouterde, O., Merle, V., Salomez, J., Branche, J., Marti, R., Lerebours, E., Cortot, A., Gower-Rousseau, C., Colomberl, J., 2008. Natural history of pediatric Crohn’s disease: a population-based cohort study. Gastroenterology 135 (4) , 1106–1103. Wengraf, T., 2001. Qualitative Research Interviewing. Sage, Thousand Oaks. White, C., Unwin, J., 1998. Postoperative adjustment to surgery resulting in the formation of a stoma: the importance of stoma-related cognitions. British Journal of Health Psychology 3, 85–93.
Contents lists available at SciVerse ScienceDirect
International Journal of Nursing Studies journal homepage: www.elsevier.com/ijns
Surgery in young adults with Inflammatory Bowel Disease: A narrative account Marion Allison a,*, James Lindsay b, Dinah Gould c, Daniel Kelly d a
Barts Health NHS Trust, Clinic 3 Ground Floor, South Tower, Royal London Hospital, Whitechapel, London, E1 1BB, UK Barts Health NHS Trust, Endoscopy Unit, Royal London Hospital, Whitechapel, London, E1 1BB, UK c Nursing and Director of Research, School of Nursing and Midwifery Studies, Cardiff University, Cardiff, CF24 0AB, UK d Royal College of Nursing Chair of Nursing Research, School of Nursing & Midwifery Studies, Cardiff University, Cardiff, CF24 0AB, UK b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 27 August 2012 Received in revised form 31 March 2013 Accepted 2 April 2013
Background: Inflammatory Bowel Disease comprises two major intestinal disorders, Crohn’s Disease and Ulcerative Colitis. When medical management cannot control the disease, surgery is necessary. Having an operation is a major concern for young people with Inflammatory Bowel Disease. Some may try to avoid or defer it. Despite this, afterwards they may have a significant improvement in quality of life. Objectives: The aim of the study was to explore the experiences of young people with Inflammatory Bowel Disease who have had, or are about to have, surgery for their condition. Design and method: Narrative study using semi structured interviews. Participants: Twenty-four young adults aged between 18 and 25 (11 male and 13 female) with Inflammatory Bowel Disease who had undergone or were awaiting surgery from one tertiary referral centre in the United Kingdom. Findings: Key factors that affected young people as they approached and adjusted to an operation were elicited which provided an understanding of this change in their lives from their own perspective. The prospect of having an operation, particularly the fear of a stoma, generated anxiety and concern for many of these young people. As young adults, participants tended to want to be involved in deciding when their surgery should occur and to have their opinions considered. The data revealed the different types of support that were given to these participants, what they found helpful and the function that they served. Gender differences were identified in the nature of support required from partners and in body image concerns. Issues and concerns were identified which can be addressed in clinical nursing practice to prepare young adults for this life changing event. These helped to explain how young people viewed the prospect, impact and experience of surgery. Conclusion: The findings of this study revealed new information relating to the experience of surgery in young adults with Inflammatory Bowel Disease including their perceptions of the event itself, their decision making, their greatest concerns, the support they require and their ways of coping. Since there is little published work regarding how surgery affects this particular patient group, the study should be of interest to specialist nurses who are closely involved in the care of young adults with Inflammatory Bowel Disease. ß 2013 Elsevier Ltd. All rights reserved.
Keywords: Inflammatory Bowel Disease Narrative study Surgery Young people
* Corresponding author. Tel.: +44 02035941781. E-mail address: [email protected] (M. Allison). 0020-7489/$ – see front matter ß 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ijnurstu.2013.04.003
M. Allison et al. / International Journal of Nursing Studies 50 (2013) 1566–1575
What is already known about the topic? A significant number of young people with Inflammatory Bowel Disease will require at least one operation for their condition. Undergoing surgery is a major concern for young people with Inflammatory Bowel Disease, some of whom will try to avoid or delay having an operation. Surgery for Inflammatory Bowel Disease is not always curative and some patients will undergo multiple operations to manage the disease. Many patients who have surgery for Inflammatory Bowel Disease benefit from improved health and a better quality of life. What this paper adds The experience of surgery can have a major impact on the lives of young people with Inflammatory Bowel Disease. Multiple factors and experiences affect young people with Inflammatory Bowel Disease as they try to cope with and adjust to their operations. Young adults desire some control, negotiation and participation in the process of decision making relating to surgery for their Inflammatory Bowel Disease. Parents, partners and friends provide different types of support serving different functions for young adults with Inflammatory Bowel Disease undergoing surgery. The most common strategies used by young adults with Inflammatory Bowel Disease to prevent, or cope with, the stress of facing an operation and in living with the consequences are direct action, advice and information seeking. 1. Introduction Inflammatory Bowel Disease is a chronic intestinal condition that affects about 240,000 people in the UK (British Society of Gastroenterology, 2003; Rubin and Rubin, 2005). Inflammatory Bowel Disease has been described as the most significant chronic disease of childhood and adolescence (Moses et al., 1998) because of the high number of new cases that are diagnosed in this age group. Between 15 and 20% of all new cases of Ulcerative Colitis develop before the age of 20 and 20–25% of patients first develop Crohn’s disease in childhood or adolescence (Rayhorn, 2001). Therefore many young people will learn of their disease and require treatment as they reach adolescence and young adulthood. Whilst advances in medical therapy may control the disease, failure of medical management continues to be the most common indication for surgical intervention (Hwang and Varma, 2008). Childhood onset Inflammatory Bowel Disease appears to be more extensive and progressive than adult disease with higher rates of panenteric involvement, more extensive inflammation and complications (Van Limbergen et al., 2008; Vernier-Massouille et al., 2008; Goodhand et al., 2010). Therefore the need for an operation can arise at a young age and in patients with disease of short or long duration; estimates of the need for surgery in those diagnosed with Crohn’s Disease before adulthood vary
1567
between 28 and 56% and of those with moderate to severe Ulcerative Colitis at diagnosis, 25% require colectomy within 5 years (Freeman, 2004; Gupta et al., 2006; Hymans et al., 1996). 2. Literature review Young people will often need more than one operation to treat the problems that arise in Crohn’s Disease (Galandiuk et al., 2005). Stricture formation and obstruction resulting from ileal inflammation can require resection of the affected bowel (Van Limbergen et al., 2008). Scarring, fibrosis, structuring and sepsis associated with perianal involvement and fistulising disease, if not resolved medically, also call for surgical intervention which may include a temporary or permanent stoma if they persist or recur (Van Dongen and Lubbers, 1996; Schwartz et al., 2001; Pikarsky et al., 2002). Following procedures such as stoma formation and the insertion of draining setons into anal fistulae, some patients may have to cope with changes in body appearance and function for a significant amount of time (Scott and Northover, 1996; Rigueiro and Mardini, 2003). Adolescents and adults alike greatly fear the prospect of surgery for Inflammatory Bowel Disease because of its association with stoma formation where faecal flow is diverted into an external bag fitted to the abdomen (Moser et al., 1995; Daniel, 2002; Savard and Woodgate, 2009). As a consequence they may resist surgery, sometimes struggling on in the presence of severe disease in an effort to defer or avoid an operation with detriment to their body and quality of life (Lynch and Spence, 2007). This widespread patient concern has generated a considerable amount of literature that not only quantitatively delineates the impact of stoma formation in terms of its effect on lifestyle and quality of life but also describes the patient experience and explores the significance and meaning of the changes in body appearance and function imposed by stoma forming surgery (Thomas et al., 1987; White and Unwin, 1998; Persson and Hellstro¨m, 2002; Brown and Randle, 2005; Richbourg et al., 2007; Thorpe et al., 2009; Savard and Woodgate, 2009). There is a growing body of literature that explores the changes which occur in people’s lives as a result of surgery for Inflammatory Bowel Disease. Long term improvements in health related quality of life for the majority of patients after ileoanal pouch (IAPP) surgery have been documented (Fazio et al., 1999; Thirlby et al., 2001). Patients have described their transition from having the temporary ileostomy as a journey from illness to health and a return to normality (Berndtsson et al., 2004). However, poor pouch function, food restrictions and physical limitations following the operation adversely affect quality of life (Fazio et al., 1999; Ha¨user et al., 2004; Coffey et al., 2002). One paper described the experiences of young adults four years after permanent stoma formation who recalled struggles related to their decision to undergo stoma surgery and distressing emotions centering on the stoma but also perceived that they now focused on living with a new perspective (Sinclair, 2009). However, the transition patients undergo after surgery as they adjust to changes in their body and its function has never been specifically
1568
M. Allison et al. / International Journal of Nursing Studies 50 (2013) 1566–1575
investigated before so there is a lack of knowledge about what helps and hinders this process. Positive adjustment to surgery might be more difficult for women than for men. In one qualitative study women’s experiences of having a temporary stoma as part of IAPP were explored. The findings revealed that a number were determined to maintain the pouch at any cost due to the traumatising effect of having a stoma, the changes in their body and the memory of pain (Notter and Bernard, 2006). Surgery other than IAPP may also have a negative impact on body image, relationships and sexual function in women; single women appear to have a poorer image of themselves after an operation than married women or those in a relationship (da Silva et al., 2008; Muller et al., 2010). However, in previous quantitative research, young people with Inflammatory Bowel Disease aged 18–25 are rarely considered as a specific group. They are viewed as adults and incorporated into samples that extend from early adulthood into old age. Since demographic data reveals that they represent only a small proportion of the total sample and results are usually not stratified according to age, it is difficult to determine whether the findings are truly representative of their situation or their views. In terms of psychosocial development, ways of thinking and experience, emerging adulthood is now recognised as a distinct stage in life (Arnett, 2000) and it is reasonable to conclude that their perceptions and concerns are different from those of older adults. Several qualitative studies have focussed on young adults’ perceptions of living with Inflammatory Bowel Disease (Lynch and Spence, 2007; Daniel, 2002; Savard and Woodgate, 2009). However, the experience of surgery has not previously been explored in depth so there is an incomplete understanding of what the issues are for young people who face the prospect of surgery. This limits the help and support that they can be given when they are faced with the possibility of an operation. In summary, there is little information pertaining to the experience of surgery in young adults with Inflammatory Bowel Disease. More specifically, we do not know how it is perceived, what factors affect their decision making, how they cope and adjust afterwards and what factors affect this process. 3. Aim and objectives The aim of the study was to explore the experience of young people with Inflammatory Bowel Disease who faced the prospect of, or had undergone, surgery for their condition. The objectives were to elicit the changes and responses that young adults with Inflammatory Bowel Disease exhibited when they were faced with or had surgery for their condition and to describe the factors and experiences that affected them as they tried to cope with and adjust to their operation. 4. Methods 4.1. Study design A qualitative investigation was undertaken to reveal in depth information about perceptions, concerns, motiva-
tions, needs and responses and thus provide the descriptive data necessary for a better understanding of these young people’s experiences as they underwent surgery for Inflammatory Bowel Disease. One of the significant ways that individuals make sense of and give meaning to their experience is to organise them in narrative form (Mishler, 1986). A narrative approach incorporating in depth interviews was chosen as an appropriate strategy for collecting the type of data required in this study as it encourages participants to tell their stories in their own words. As young adults, the participants in this study had the necessary skills, including recall, insight, interest, attention span and life experiences to recount their personal stories related to surgery and Inflammatory Bowel Disease (Haglund, 2004). 4.2. Sample Patients aged 18–25 who attended the adolescent and young adult clinic at a single tertiary referral centre in the UK were asked to participate in semi structured interviews for the purpose of exploring their experience of surgery. The Consultant Gastroenterologist initially identified suitable potential participants who met the selection criteria from the patient database. The researcher used purposive sampling to determine which patients to approach. These patients were provided with written information about the study and then contacted a week later to ascertain their willingness to participate and arrange a date for interview if they agreed. The written information included details of the study and its purpose, the interview process and the researcher’s details and role. The final sample size of 24 participants was determined during data analysis; when no new information or insights emerged, recruitment stopped. Only one patient declined to be interviewed because he felt too unwell to participate. 4.3. Selection criteria Patients were eligible to take part if they had a confirmed diagnosis of Inflammatory Bowel Disease and had had surgery for their condition or had been referred to the Colorectal Surgical team for an opinion. Selection criteria were deliberately broad to ensure that participants within the appropriate age group of both sexes, from different cultures and backgrounds and at different stages in their experience of possible surgery were included. 4.4. Data collection Interviews took place over a period of 10 months. All interviews were conducted in a neutral, private setting within the hospital and away from the Gastroenterology clinic, usually before or after a routine clinic appointment. A small number of participants arranged an appointment for interview at another time and three others chose to be interviewed when they were hospital inpatients following surgery. The remainder were interviewed several months to two years following their last operation. Written consent was obtained from each participant immediately prior to interview, during which they gave
M. Allison et al. / International Journal of Nursing Studies 50 (2013) 1566–1575
permission for the interview to be tape recorded. The first author (MA) conducted all the interviews, which lasted from 30 min to 1.5 h. Careful consideration was given to the research objectives and how they could be transformed into suitable questions that would elicit sustainable stories (Wengraf, 2001). A broad interview guide with open questions was developed with advice from an academic supervisor experienced in conducting health care research with adolescents and young adults (Appendix). Similar guides have previously been used in research with young people to help focus their thoughts, aid the narrative flow and facilitate a comprehensive exploration of their experiences (Kynga¨s, 2003). In practice most participants were eager to tell their stories and in doing so provided information pertaining to many of the issues within the schedule without directly being asked. All participants were offered the opportunity to review the interview transcript and all but two declined, most stating that they were satisfied that the information provided would be recorded accurately or that they would not wish to remove information that they had shared. 4.5. Data analysis Interviews were transcribed verbatim and two methods used to organise and reduce the raw data in the manuscripts. The first was storymapping (Richmond, 2002) in which a grid was developed, the vertical axis of which was labelled with 10 categories that captured all the aspects of their lives the participants had discussed such as ‘the surgery’ ‘my body’ ‘family’ ‘self’. The horizontal axis was divided into ‘past experiences, present experiences’ and ‘future intentions’. This provided a means of understanding changing thoughts, feelings and behaviour over time in key areas of participants’ lives by inserting their own phrases into the appropriate cells on the grid (Table 1). The second technique used to reduce and organise the data was restorying (Cresswell, 2008), whereby repetition was removed and the participants’ storymaps were synthesised into an account that told, still in their own words, of their experience of surgery and its effect on their lives. These stories grouped together content from related categories in the storymaps and facilitated the emergence of the final key themes: perceptions of surgery, self, support and coping strategies.
Table 1 Storymap to organise transcript data. Past experiences Self Disease The surgery Health professionals Family Friends/other people Intimate relationships Appearance College/Work Activities
Present experiences
Future intentions
1569
4.6. Ethical approval Ethical permission was given by the local research ethics committee and local approval by the hospital research and development department. Because it was anticipated that some young people could experience discomfort or distress when recalling events, thoughts or feelings related to their condition arrangements were made to elicit support from appropriate health care team members. This was provided for one female participant. 5. Findings 5.1. Participants’ characteristics Of the 24 young people interviewed, 11 were male and 13 female. All were aged from 18 to 25, with the majority in their early twenties. Ethnicities represented were: 11 White, 8 Asian British, 5 Black British. Seventeen had Crohn’s Disease and 7 Ulcerative Colitis. Eleven were working, 9 were at college or university, of whom 2 had part time jobs. Four had no occupation at the time of interview. Twelve were in steady heterosexual relationships, and three of these had plans to marry. Twelve were currently single, including 5 who had not had a close relationship since surgery. Only one female participant was a parent. 5.2. Participants’ experience of surgery One participant was waiting for his first operation. One had refused surgery. Of the remaining 22 participants, four had first had surgery as a child, all but one of whom had a permanent stoma. Eight male patients had undergone major abdominal surgery, with a total of 15 procedures between them. One had had three operations, 5 had undergone two, and 2 had undergone 1. Two were living with a stoma at the time of interview. Three had had a stoma reversed, two of whom were living with an ileoanal pouch. Four operations had been done laparoscopically. All 13 females had experienced surgery. Six had undergone more than one operation. The 8 who had abdominal surgery all had open procedures. Five of these were currently living with a stoma and 1 with an ileoanal pouch. Seven females had surgery for perianal disease, 4 of which had had more than one procedure. Five currently had a seton stitch in situ. Four of the seven had also had major abdominal surgery. Two of these were among those with a stoma. 5.3. The surgery 5.3.1. Perceptions of surgery Trigger events, timing and control were often closely associated dimensions in participants’ stories and those that were mentioned most frequently. Sometimes worsening symptoms over a variable period of time enabled patients to acknowledge gradually that surgery was the only solution. Some initially resisted an operation but reached a turning point when they decided they could no longer endure their symptoms or continue living as they were.
1570
M. Allison et al. / International Journal of Nursing Studies 50 (2013) 1566–1575
Definite trigger events such as hospitalization for uncontrolled disease, overwhelming symptoms or acute complications of disease (such as perianal abscess formation, sepsis and toxic megacolon) precipitated emergency admission to hospital closely followed by surgery for others. Several participants described negotiating with the medical team about the timing of their operation, most commonly because they wanted it to take place when it would least interfere with college or work, even when their surgery was deemed urgent. Lack of control in managing the timing of surgery occurred when procedures had to be carried out as an emergency or because of the seriousness of their condition but where there was no urgency, there was time consider and prepare for the event. The dimension of control as it was experienced, perceived and expressed by the participants was complex. All were in a situation where the disease itself and its symptoms could no longer be managed by medication. The only remaining treatment choice was surgery so there was little control whether they should have an operation or not. Most were dependent on the expert opinion, knowledge and advice of their physicians and surgeons about their disease and the right course of action for its management. However four participants did not accept medical advice and exercised personal control by refusing to have surgery. One knew that he had not been compliant with his medication but had not told his physician. Another with a long history of previous surgery refused any further surgical procedures, trusting her own experience more than the advice of her doctors. The two remaining patients had been younger teenagers when surgery was first suggested. Both described situations of conflict and distress where they had argued with doctors; in the end neither could be persuaded: ‘They booked me in to have it done in the December. I went you’re joking. I ain’t having it and I didn’t. Obviously I didn’t go.’ (F6, aged 21) As they recovered from major surgery, the majority of the young people experienced a welcome change from the role as a sick person where life was dominated by considerations and disruptions related to their illness and its treatment, to the feeling of being well. They looked forward to being able to do the things that their healthy peers could do such as working, studying, finding a partner, without the constraints and difficulties associated with the symptoms of uncontrolled disease. They appreciated the increased independence that surgery gave them. Some also expressed a sense of wonder at the changes in themselves and their situation. One participant had become a mother. Her entry to this role had been difficult with a premature delivery followed by a pelvic abscess that required an ileostomy operation: ‘It just went downhill for me. . .I suffered from depression. . .just felt so low’ (F7, aged 23) There were also differences in the way that participants with Ulcerative Colitis and Crohn’s Disease perceived the duration of surgery. Those with Ulcerative Colitis knew
that the surgery was curative and that their stomas were temporary. Once they had adjusted to the ileoanal pouch they could go on to live their lives free from symptoms. Participants with Crohn’s appreciated the improvement but also had concerns about whether it would last. They hoped that the disease would not return and were vigilant about any symptoms such as abdominal pain that might signal a recurrence. Surgery for Crohn’s could also bring additional problems; after initial surgery 10 years previously one participant had never known what it was like to be completely healed. The majority of females who underwent surgery for perianal abscesses and fistulation with seton stitch insertion, particularly if they had had multiple procedures or continuing surgical complications, expressed frustration about their lives. The lack of definitive treatment impacted negatively on a desire to be ‘normal’: ‘It’s been six years of having abscesses. . .never being normal, having setons. . . I want it sorted’ (F11, aged 22) The other big issue for participants was having a stoma and knowing whether it would be temporary or permanent. With this knowledge one participant who had previously refused an operation finally consented four years later: ‘I just decided just get on and do it and that was cause he said he’d reverse it. Even if it was that bad he’d reverse it anyway’ (M3, aged 18). In common with others whose stoma was temporary this young man chose to restrict his life until it was reversed. The main way that both male participants with Ulcerative Colitis awaiting stoma reversal did this was a decrease in dating. There was often no definite time for reversal for patients with Crohn’s Disease which some had found frustrating. Others, however, elected finally to keep the stoma: ‘I’m so happy with the way I can live my life at the moment that the idea of having another operation and the risk of uncertainty, I just don’t think it’s worth it.’ (F9, aged 21) Those who had more than one operation had mixed experiences. Predictably this also influenced their views about further surgery. Participants who had had positive experiences were positive about going into another operation even if it was for disease recurrence. However previous difficult experiences gave rise to anxiety and concern about whether this time would be the same: ‘I was. . .so upset for days when I found out they were going to do it again. . .When you know what’s gonna happen, it’s scary’. (F1, aged 19) Participants’ assessments of the surgery preoperatively were individual and dependent on the factors described previously. Where there was time before surgery perceptions could change, particularly if symptoms increased or young people utilised various strategies to help them understand and cope with the forthcoming operation. Fears and concerns preoperatively related mainly to the surgery itself especially when this was a new and unknown
M. Allison et al. / International Journal of Nursing Studies 50 (2013) 1566–1575
experience. However surgery was regarded as a benefit by those who considered their current situation and how it could be improved by an operation. Some were more active in this process than others; those who had thought about how surgery could make a positive change in their lives, gathered information and prepared themselves tended to describe less difficult postoperative experiences. Self insight into their ability to cope, drawing on personal strengths and receiving positive feedback from others following previous surgery also raised confidence levels and helped with preparation when a further operation was anticipated: ‘Even though it was a major op I wasn’t nervous. The first operation, that made me a lot stronger in myself. . .I was a lot more confident’ (M2, aged 18) 5.3.2. Support All participants appreciated the care and support given by their family, especially parents, both during their illness and before and after surgery with descriptors such as ‘always there for me’, ‘really supportive’ and ‘brilliant’. By being there during the hospital stay and in the early stages of recovery families provided a constant and reassuring presence and helped participants to cope when they were psychologically fragile. It was usual for the whole family to rally round in support and one patient described a wider Christian community family that sustained him. Parents who had a supportive rather than over protective attitude and encouraged their child to live normally were perceived positively as was their use of ‘tough love’ or straight talking to prevent their children from feeling too sorry for themselves: ‘My mum. . . made me a bit stronger. . .she used to, not in a horrible way. . .say to me there’s people worse off than you’ (F7, aged 23) Parental and family support was mainly nurturing in the acute phases of illness and surgery in that just being there as a loving and caring presence was perceived as helpful. Parents also had a facilitative role in assisting their children to cope with the surgery and its effects. They did this by offering practical help, sharing experiences (such as not eating when they were nil by mouth, or discontinuing previously shared activities until they could participate again); having a positive attitude and responding appropriately to wellness and the freedom which their recovering children desired by decreasing vigilance; practical assistance and resuming normal family relationships. Participants were aware that their parents sometimes found it difficult when they could not actively help their child and also to let go when they wanted more independence. Parental overprotection was perceived negatively: ‘Since the operation I’ve had my parents on my case. They’ll be up in the morning, making my breakfast. . .now have my lunch on time and even my dinner on time. . .my mother saying this, my grandmother saying this. . . (M9, aged 23) Most participants who talked about friendships all described positive experiences although there were some
1571
differences in the type of support sought from and given by young men and young women. Young women were more open in their disclosures about their illness and surgery. Before and after the operation they expected and received emotional support from their female friends and also that they would provide practical help. Young men tended to be more selective and less open in disclosing their illness or details of their surgery than the young women. Those who made new friends at university did not disclose any information until it could no longer be avoided. Friends were perceived as encouraging when told about impending surgery. However their key role after surgery appeared to be a normalising one; participants described how in the company of supportive friends they were treated the same and had opportunities to do the things that their peers did. Their friends did not ask much about or dwell on their surgery, sometimes because they simply forgot. Male participants who talked about support in their intimate relationships looked for and received different support from female participants. Young men wanted practical support following the operation such as help managing a stoma. This was sometimes described as an extension of the role a female partner had previously undertaken such as managing medicine compliance and diet. However, ‘overvigilance’ was perceived negatively and could lead to friction. Young women wanted and received comfort, emotional support and reassurance. Male partners also used humour to make them feel better and to dissipate worries: ‘If you’re not. . .having a great day or whatever then he comes home from work and. . .just makes me laugh and that, just gives me a cuddle or whatever and it really helps’ (F3, aged 23). Participants perceived their physicians as supportive in that they would work with them to find an effective treatment but they did not tend to seek emotional support from medical staff. It was appreciated when given but they did consider this to be the doctor’s role. What they did expect was that they would support them by continuing to treat them regardless of the outcome. They also wanted medical staff to acknowledge their feelings, opinions and concerns. Where this did not occur there could sometimes be open conflict. Because they had lived with the illness for a long time some participants felt that they were the experts on their own condition and therefore had a valid contribution to make to decision making. Participants also commented that surgeons had a different approach from their physicians: ‘If you go to see a surgeon they have something that they’re going to do and they’re such straightforward people. They. . .don’t make anything seem nice or flowery or everything’s going to be fine. . .This is what we’re gonna do. . . we might have to do this but only in x per cent of cases’ (F4, aged 25). The member of the health care team who was considered appropriate for providing emotional support was the specialist nurse. They provided continuity of care when participants were outpatients and at home. It was to her that they first turned for reassurance and help:
1572
M. Allison et al. / International Journal of Nursing Studies 50 (2013) 1566–1575
‘She’s excellent. . .I’d be lost without her she’s amazing whenever there’s a problem literally I ring her and she meets me straight away’. (F7, aged 23) 5.3.3. Self Changes in bodily appearance after surgery upset young women most who described concerns about their physical attractiveness due to scarring, an uncontrolled bowel and, with a stoma, how their clothing choices were affected. Young men seemed more concerned about their bodies after surgery only when they had a stoma. They did not pay scars much regard. When the stoma was temporary young people limited their lifestyles while they waited out the time until it was reversed. However most did adapt over varying periods of time and they managed to do this while sometimes expressing strong feelings of antipathy towards the stoma. Those whose stomas were present for a long time described a gradual process of adjustment during which stoma related concerns decreased. However the key factor in adjustment was their ability to see the positive changes that the stoma had brought to their lives: ‘I did adjust to it. . .cause at the end of the day. . .I’m healthy. . .and I’m well because of it’ (M2, aged 18). The stoma was a hidden difference. Disclosing this to others, especially potential partners, was a key concern. However these young people accepted the stoma much more easily than they had anticipated. Some were suitable for reconstructive surgery but decided against this as they did not want to risk the life they had with a stoma for the uncertain outcome of another operation. Having the stoma closed was a significant milestone in the lives of those with Ulcerative Colitis. They took the adjustments necessary for living with an ileoanal pouch in their stride. Once they had physically recovered from the surgery they described lives similar to those of healthy peers. Young women with perianal surgery and seton insertion described similar problems before and after surgery: pain and constant malodorous leakage which could only be contained with pads. In addition they were stuck in a cycle of recurrent disease and multiple operations which was hard to adjust to. All but one stated they wanted the seton removed: ‘It really makes you feel unattractive. . .your confidence is down and your self esteem goes down’ (F1, aged 19). Young people of both sexes had concerns about their sexuality. These were much greater for young women who worried about conception, pregnancy, delivery and raising a child. All these young people had lived through a great deal in their lives. Some felt these experiences had affected their personality. Others described low periods with the illness, during surgery or at times of crisis but for most they were transient. All but four used the word ‘normal’ in relation to themselves. Some referred to it multiple times; they were sensitive to the fact that they looked normal to other people or expressed the wish to ‘be normal’ or to live a normal life unaffected by their illness and improved by surgery. Mostly these young adults coped well with these difficult times. Several described qualities in themselves that they felt had enabled them to do this, such as ‘bravery’,
‘determination’ and ‘commitment’. Others recognised that having the surgery had changed them and they had developed more inner strength or resilience. Those who had had multiple surgery and ongoing problems expressed pessimism about the future. Other participants described a positive attitude to life which consisted of carrying on with things, not worrying excessively and not letting their lives be circumscribed by illness. After surgery, even when it was not curative, participants felt they had got their lives back. Several described how their world had expanded, they had ambitions and made plans for the future: ‘It’s made a huge difference in my life definitely. . .I want to settle down. Five years time . . .I plan to get married. . .college next year. . .crack on with it really’ (M10, aged 20) 5.3.4. Strategies Participants described a wide variety of strategies they used to prevent or cope with the stress of facing an operation and in living with the consequences. Some used multiple strategies to help them. Those used most often were: direct action, advice and information seeking, making positive comparisons, having the right attitude, ignoring the situation and emotional release. ‘Getting on with it’ was the commonest strategy, described by over half the participants, to deal with situations such as coping with pain, adjusting to symptoms, learning how to live with an Iileoanal pouch and a stoma. Similar strategies were expressed as ‘dealing with it’ and ‘sorting it out’. ‘Getting on with it’ for participants with a stoma encompassed three elements – self reliance, direct action and not dwelling on, or making an issue of things, whether they were part of everyday experience or an unexpected problem. Participants with Crohn’s disease also used this phrase to describe how they coped with symptom recurrence and the knowledge that this was something that they could not influence. Participants sought and obtained information from a variety of sources and for a number of reasons – to help them to understand the situation, to reduce anxiety, for reassurance and to assist in decision making before an operation. Before an operation was the time when participants felt a need to find out about a situation they had not previously experienced so they could know what was going to happen to them. Common sources of information included the Internet and other people who had had surgery: ‘The main things that stopped me being afraid of it was doing research on the operation itself and just reading. . .testimonials about people that have had it done in the past. . .Mostly it’s 80% positive things that people say about it and their lifestyle after the operation – it’s much better, so that has made me feel very reassured’ (M1, aged 23). Health professionals were the other major resource. They were asked for advice about planned surgery, worrying symptoms and treatment. Positive comparisons were used widely. Participants made comparisons between their state of health and what they could do before and after surgery and between themselves and other people whom they perceived as
M. Allison et al. / International Journal of Nursing Studies 50 (2013) 1566–1575
being worse off. In considering life before and after surgery participants thought of the event as having saved their lives, restored their health and improved the quality of their lives. Three participants recognised that not adhering to their medication regimes might have contributed to the need for surgery. Some practised ignoring and avoidance towards worsening symptoms: ‘I went for two years not showing them my bum, not talking about anything and it didn’t get me anywhere. . .It got me into a situation I couldn’t get out of’ (F6, aged 21) Participants often described how important it was to have the right attitude towards surgery and how a positive attitude helped them through sometimes difficult times. Many of these comments related to personal efforts they needed to make to help themselves cope with their experiences. They demonstrated an emotional maturity they had either developed in the time before surgery or as a direct result of it. Keeping rational thoughts, avoiding panic and stress were themes repeated by other participants: ‘Just keep thinking positively. . .If you think about things rationally you’ll get through a lot faster’ (M6, aged 21) There was a difference in the way that male and female participants used emotional release. Young men described single episodes associated with specific events such as venting frustration when not being listened to or the development of a postoperative complication that slowed recovery. The young women who described emotional outbursts used them repeatedly. Although they occurred mainly with family and friends they could also do this in the presence of health professionals. Less commonly used strategies included distraction which served to help some participants to cope when they were feeling low. ‘Wishful thinking’ was evident in three participants who described wishing that things were different and two others who expressed the desire to be other than they were. A few resigned themselves to certain things about which they felt there was nothing they could do such as the inevitability of pain after an operation. Strategies used by individual participants included self blame and putting on a brave face. One young woman with a stoma uses dress and appearance to enhance her self esteem: ‘I go out in the skimpiest outfits. . .and I think that makes it a lot easier. . .people look at me and speak to me and think I’m normal’ (F6, aged 21) 6. Discussion This study is the first qualitative investigation into the prospect, impact and experience of surgery as it affects young adults with Inflammatory Bowel Disease. The strength of this study is that it elicits key factors that affect young people as they approach and adjust to an operation. It also provides an understanding of this change in their lives from their own perspective. The current study indicates that the prospect of having an operation, particularly the fear of a stoma, generated
1573
anxiety and concern. These findings are congruent with those of previous researchers (Irvine, 2004; Moser et al., 1995). The data revealed that these young adults mainly sought information from the Internet and from others who had previous experience of surgery. YouTube and Internet chat rooms provide a different sort of information from the traditional written information booklets which are given out to patients preoperatively. Health care professionals need to be aware of the resources that are available to be able to help patients access those that are reliable and accurate in their depiction and to assist them to process the wide variety of information to which they have independent access. Several interesting findings also emerged in relation to the issue of control, negotiation and participation in the process of decision making relating to surgery. As young adults the participants tended to want to be involved in deciding when surgery should occur and to have their opinions considered. They appreciated those surgeons who explained the situation and the operation so that they could understand. They responded negatively to those who ‘knew best’ and did not provide opportunities for discussion and negotiation. This has implications for the health care team in the manner in which they engage with young people prior to surgery; evidence from this study suggests that if appropriate dialogue does not occur, they may refuse necessary surgery. The data also reveals the different types of support that were given to these participants, what they found helpful and the function that they served. They depended on nurturing parenteral support whilst physically recovering from an operation. They appreciated encouragement, less vigilance and the freedom to regain independence as they returned to health. Peer friendships were significant in this process. These had a normalising effect in that participants were treated the same as their healthy friends. There were gender differences in the support that participants expected from partners; young women sought comfort and emotional support and appreciated partners who lightened the situation with humour. Male participants wanted practical help. In common with other published work on the outcomes of ileoanal pouch surgery for Ulcerative Colitis the findings revealed that the four young adults in this study had a positive result, resuming normal lives and feeling well (Berndtsson et al., 2004; McGuire et al., 2007; Carmon et al., 2003). Stoma formation, dreaded by many participants preoperatively, was also usually adjusted to over time. Those whose stoma was permanent or who had elected to keep it reported resumption of most activities and a return to health. This finding has also been noted in previous studies (Camilleri-Brennan et al., 2003; Savard and Woodgate, 2009). The young women in this study who underwent abdominal surgery, none of which was performed laparoscopically, reported more concerns with body image related to scarring and/or the presence of a stoma than the young men. They were also more worried about the consequences of both abdominal and perineal surgery on sexuality, including their attractiveness to actual or potential partners, fertility, pregnancy and childbirth. There is some evidence from work in the wider
1574
M. Allison et al. / International Journal of Nursing Studies 50 (2013) 1566–1575
adult population that women are more affected by these issues following surgery for Inflammatory Bowel Disease (Muller et al., 2010; da Silva et al., 2008). This warrants further investigation. The data suggests that some young women with perianal disease who undergo surgery may have a particularly difficult time. A draining seton controls sepsis but constant malodorous leakage appears to have a negative effect on body image and self esteem and to be difficult to adjust to. There is very little previous research on the effects of this surgery on adults with Inflammatory Bowel Disease. Finally, the data also reveal that, for young adults, preparing for and recovering from surgery is a challenge and some may have a difficult and prolonged experience. Therefore nurses who provide care for these patients have a key role to play in providing the individualised emotional and practical support they require to adjust to surgery, and to help them to utilise their individual strengths and positive coping strategies to fully attain the improved quality of life that an operation is intended to promote. 7. Study limitations The findings may be limited by the inclusion of only one male patient with experience of perianal surgery. Therefore it was not possible to draw any conclusions as to whether there are gender differences in the experiences of young adults who have surgery in this sensitive area Further study should be undertaken to investigate this. In addition, single interviews may not have fully captured an individual’s changing perceptions especially when they retrospectively recounted events that occurred several years previously. However there is sufficient information within this study to provide a useful account of the impact of surgery on young people who have Inflammatory Bowel Disease. 8. Conclusion The findings of this study revealed new information relating to the experience of surgery in young adults with Inflammatory Bowel Disease including their perceptions of the event itself, their decision making, their greatest concerns, the support they may require and their ways of coping. Since there is little published work regarding how surgery affects this particular patient group, the study should be of interest to specialist nurses and other professionals who are closely involved in the care of young adults with Inflammatory Bowel Disease as it adds to the body of knowledge in the field. It also provides nurses with information that they can use to be able to provide appropriate preoperative counselling and helpful and effective care for their own patients who find themselves in a similar situation. Acknowledgement This research was funded by a grant from the charity Crohn’s and Colitis UK.
Conflict of interest: None declared. Funding: charity Crohn’s and Colitis UK (a UK charity). Funders not involved in research activity. Ethical approval: City and East London REC 09/H0704/26. Appendix A. Appendix: Interview schedule Before When you first heard that you might have to have surgery how did you feel about that What main concerns did you have How did you think your life might be affected by the surgery How did you come to the decision that you would go ahead with the surgery After What changes were there is your life after you had the surgery What do you think has been the impact of this surgery on your everyday life How do you feel about your body after the surgery How do you feel about yourself after the surgery Sometimes after an operation relationships with other people can change. Has this been your experience What things in your life helped you to cope after your surgery Sometimes there are events or experiences related to surgery that are turning points in people’s lives. Can you remember any of these happening to you What would you say to somebody else facing similar surgery for their Inflammatory Bowel Disease Is there anything else you think I need to know References Arnett, J., 2000. Emerging adulthood: a theory of development from the teens through the twenties. American Psychologist 55, 469–480. Berndtsson, I., Oresland, T., Hulten, L., 2004. Sexuality in patients with ulcerative colitis before and after restorative proctocolectomy: a prospective study. Scandinavian Journal of Gastroenterology 39 (4) 374–379. British Society of Gastroenterology, 2003. Guidelines for the Management of Inflammatory Bowel Disease in Adults. BSG, London. Brown, H., Randle, J., 2005. Living with a stoma: a review of the literature. Journal of Clinical Nursing 14, 74–81. Camilleri-Brennan, J., Munro, A., Steele, R., 2003. Does an ileoanal pouch offer a better quality of life than a permanent ileostomy for patients with ulcerative colitis? Journal of Gastrointestinal Surgery 7 (6) 814– 819. Carmon, E., Keidar, A., Ravid, A., Goldman, G., Rabau, M., 2003. The correlation between quality of life and functional outcome in ulcerative colitis patients after proctocolectomy ileal pouch anal anastomosis. Colorectal Disease 5 (3) 228–232. Coffey, J.C., Winter, D., Neary, P., Murphy, A., Redmond, H., Kirwan, W., 2002. Quality of life after ileal pouch-anal anastomosis: an evaluation of diet and other factors using the Cleveland Global Quality of Life instrument. Diseases of the Colon and Rectum 45, 30–38. Cresswell, J., 2008. Narrative research designs. In: Educational Research: Planning Conducting and Evaluating Quantitative and Qualitative Research. 3rd ed. Pearson Education, Inc., Upper Saddle River, NJ, pp. 511–550. Daniel, J., 2002. Young adults’ perceptions of living with chronic Inflammatory Bowel Disease. Gastroenterology Nursing 25 (3) 83–94. da Silva, G., Hull, T., Roberts, P., Ruiz, D., Wexner, S., Weiss, E., Nogueras, J., Daniel, N., Bast, J., Hammel, J., Sands, D., 2008. The effect of colorectal surgery in female sexual function, body image. Self-esteem and
M. Allison et al. / International Journal of Nursing Studies 50 (2013) 1566–1575 general health: a prospective study. Annals of Surgery 248 (2) 266– 272. Fazio, V., O’Riordain, M., Lavery, I., Church, J., Lau, P., Strong, S., Hull, T., 1999. Long-term functional outcome and quality of life after stapled restorative proctocolectomy. Annals of Surgery 230 (4) 575– 584. Freeman, H., 2004. Comparison of long-standing paediatric onset and adult onset Crohn’s disease. Journal of Paediatric Gastroenterology and Nutrition 39, 183–186. Galandiuk, S., Kimberling, J., Al-Mishlab, T., Stromberg, A., 2005. Perianal Crohn’s disease: predictors of need for permanent diversion. Annals of Surgery 241 (5) 796–802. Goodhand, J., Dawson, R., Hefferon, M., Tshuma, N., Swanson, G., Wahed, M., Croft, N., Lindsay, J., 2010. Inflammatory Bowel Disease in young people: the case for transitional clinics. Inflammatory Bowel Diseases 16 (6) 947–952. Gupta, N., Cohen, S., Bostrom, A., Kirschner, B., Baldassano, R., Winter, H., Ferry, G., Smith, T., Abramson, O., Gold, B., Heyman, M., 2006. Risk factors for initial surgery in paediatric patients with Crohn’s disease. Gastroenterology 130 (4) 1069–1077. Haglund, K., 2004. Conducting life history research with adolescents. Qualitative Health Research 14, 1309–1319. Ha¨user, W., Dietz, N., Steder-Neukamm, U., Janke, K., Stallmach, A., 2004. Biopsychosocial determinants of health-related quality of life after ileal pouch anal anastomosis for ulcerative colitis. Inflammatory Bowel Diseases 10 (4) 399–407. Hwang, J., Varma, M., 2008. Surgery for Inflammatory Bowel Disease. World Journal of Gastroenterology 14 (17) 2678–2690. Hymans, J., Davis, P., Lere, T., Justinich, C., Markowitz, J., 1996. Clinical outcome of ulcerative colitis in children. Journal of Paediatrics 129, 81–88. Irvine, E., 2004. Review article: patients’ fears and unmet needs in Inflammatory Bowel Disease. Alimentary Pharmacology and Therapeutics 20 (Suppl.) 54–59. Kynga¨s, H., 2003. Patient education: perspective of adolescents with a chronic disease. Journal of Clinical Nursing 12, 744–751. Lynch, T., Spence, D., 2007. A qualitative study of youth living with Crohn’s disease. Gastroenterology Nursing 31 (3) 224–230. McGuire, B., Brannigan, A., O’Connell, P., 2007. Review: Ileal pouch - anal anastomosis British Journal of Surgery 94 (7) 812–823. Mishler, E., 1986. Research Interviewing: Context and Narrative. Harvard University Press, Cambridge, MA. Moser, G., Tillinger, W., Sachs, G., Genser, D., Maier-Dobersberger, T., Spiess, K., Wyatt, J., Vogelsang, H., Lochs, H., Gangl, A., 1995. Disease related worries and concerns: a study on outpatients with Inflammatory Bowel Disease. European Journal of Gastroenterology and Hepatology 7 (9) 853. Moses, P., Moore, B., Ferrentino, N., Bensen, S., Vecchio, J., 1998. Inflammatory Bowel Disease: 1 origins, presentation and course. Postgraduate Medicine 103 (5) 77–84. Muller, K., Prosser, R., Bampton, P., Mountifield, R., Andrews, J., 2010. Female gender and surgery impair relationships body image, and sexuality in Inflammatory Bowel Disease. Inflammatory Bowel Diseases 16, 657–663. Notter, J., Bernard, P., 2006. Preparing for loop ileostomy surgery: women’s accounts from a qualitative study. International Journal of Nursing Studies 43, 147–159.
1575
Persson, E., Hellstro¨m, A., 2002. Experiences of Swedish men and women 6–12 weeks after Ostomy surgery. Journal of Wound, Ostomy and Continence Nursing 29 (2) 103–108. Pikarsky, A., Gervaz, P., Wexner, S., 2002. Perianal Crohn’s disease: a new scoring system to evaluate and predict outcome of surgical intervention. Archives of Surgery 137, 774–777. Rayhorn, N., 2001. Treatment of Inflammatory Bowel Disease in the adolescent. Journal of Infusion Nursing 24 (4) 255–262. Richbourg, L., Thorpe, J., Rapp, C., 2007. Difficulties experienced by the ostomate after hospital discharge. Journal of Wound, Ostomy and Continence Nursing 34 (1) 70–79. Richmond, H., 2002. Learners’ Lives: A Narrative Analysis. The Qualitative Report, Vol. 7, No. 3 Retrieved 11.8.2012, from http://www.nova.edu/ ssss/QR/QR7-3/richmond.html. Rigueiro, M., Mardini, H., 2003. Treatment of perianal fistulising Crohn’s disease with infliximab alone or as an adjunct to examination under anaesthesias with seton placement. Inflammatory Bowel Disease 9, 98–103. Rubin, H., Rubin, I., 2005. Qualitative Interviewing: the Art of Hearing Data, 2nd ed. Sage, Thousand Oaks. Savard, J., Woodgate, R., 2009. Young peoples’ experience of living with ulcerative colitis and an ostomy. Gastroenterology Nursing 32 (1) 33– 41. Schwartz, D., Pemberton, J., Sandborn, W., 2001. Diagnosis and treatment of perianal fistulas in Crohn’s disease. Annals of Internal Medicine 135, 906–918. Scott, H., Northover, J., 1996. Evaluation of surgery for perianal Crohn’s fistulas. Diseases of the Colon and Rectum 39, 1039–1043. Sinclair, L., 2009. Young adults with permanent ileostomies: experiences during the first 4 years after surgery. Journal of Wound, Ostomy and Continence Nursing 36 (3) 306–316. Thirlby, R., Sobrino, M., Randall, J., 2001. The long-term benefit of surgery on health-related quality of life in patients with Inflammatory Bowel Disease. Archives of Surgery 136 (5) 521–527. Thomas, C., Madden, F., Jehu, D., 1987. Psychological effects of stomas: 1. Psychosocial morbidity one year after surgery. Journal of Psychosomatic Research 31 (3) 311–316. Thorpe, G., MacArthur, M., Richardson, B., 2009. Bodily change following faecal stoma formation: qualitative interpretive synthesis. Journal of Advanced Nursing 65 (9) 1778–1789. Van Dongen, L., Lubbers, E., 1996. Perianal fisulas in patients with Crohn’s disease. Archives of Surgery 121, 187–1190. Van Limbergen, J., Russell, R., Drummong, H., Aldhous, M., Round, N., Nimmo, E., Smith, L., Gillett, P., McGrogan, P., Weaver, L., Bisset, W., Mahdi, G., Arnoot, I., Satsangi, J., Wilson, D., 2008. Definition of phenotype characteristics of child-onset Inflammatory Bowel Disease. Gastroenterology 135, 1114–1122. Vernier-Massouille, G., Balde, M., Salleron, J., Turck, D., Dupas, J., Mouterde, O., Merle, V., Salomez, J., Branche, J., Marti, R., Lerebours, E., Cortot, A., Gower-Rousseau, C., Colomberl, J., 2008. Natural history of pediatric Crohn’s disease: a population-based cohort study. Gastroenterology 135 (4) , 1106–1103. Wengraf, T., 2001. Qualitative Research Interviewing. Sage, Thousand Oaks. White, C., Unwin, J., 1998. Postoperative adjustment to surgery resulting in the formation of a stoma: the importance of stoma-related cognitions. British Journal of Health Psychology 3, 85–93.