In the UK, approximately 21 000 people undergo intestinal stoma surgery each year for bowel cancer, abdominal trauma, neurogenic bowel due to spinal injury, and inflammatory bowel disease (IBD)(Beeken et al, 2019). Population health demographics are changing; on average, people live longer and enter middle and older age with at least one chronic condition (Barnett et al, 2012; Department of Health (DH), 2012). Survival needs to be accompanied by good quality of life (QoL) (Davis et al, 2017).
Lifesaving and symptom-improving stoma surgery improves QoL for many (Camilleri-Brennan et al, 2003; Silva et al, 2003; Umanskiy and Fichera, 2010; Kuruvilla et al, 2012), but can also contribute to a disease-related burden of distress (Dibley et al, 2018a), which may be compounded in individuals who find change difficult.
Stoma surgery presents a major emotional challenge, and for some people with IBD it may relieve, rather than resolve, disease. In the authors' previous study (Dibley et al, 2018b) participants indicated that ‘I would rather die than live like that’. Unpublished data from the same study revealed disgust at the prospect of a stoma: ‘there was no way I was going to be walking round with a bag of shit [sic] attached to me’, denial of the existence of their stoma: ‘I didn't tell my [teenage] children that I was having one. I hid it from them successfully for five months. I don't know if that was a good thing to do or not’, and a struggle to achieve psychosocial adjustment: ‘it's taken me two years to come to terms—if indeed I have—with the results’.
These responses may be driven by factors such as age, childhood socialisation regarding bodily functions, and resilience, which are known to influence patient adjustment to living well with IBD (Ma et al, 2007; Sirois and Hirsch, 2017; Dibley et al, 2018c).
Preoperative preparation for patients with IBD who are facing stoma surgery necessarily addresses practical management (Burch, 2017) since physically and cognitively able patients must learn to manage their stoma. In a time and resource-pressured environment, highly skilled stoma care nurses prepare patients for surgery. In the initial postoperative phase, the focus of patients and nurses is often on the immediate practicalities of stoma care rather than the patient's psychosocial needs or capacity to adjust to life with a stoma. Retrospective QoL research on postoperative stoma patients mostly focuses on clinical outcomes such as disease resolution or palliation, and incidence of side-effects such as parastomal herniation or peristomal skin damage (Pittman et al, 2008; Näsvall et al, 2017). Persson and Hellstrom (2002) provide the only prospective evidence on psychosocial adjustment to stoma from their small Swedish study (n=9), with data collected 6 and 12 weeks after ostomy surgery. Despite receiving preoperative education, participants struggled to adapt; better understanding of the needs of patients anticipating stoma surgery, and improved preparation and support for new stoma patients, is recommended. However, the sample size was small and heterogeneous; only three participants had ulcerative colitis, none had Crohn's disease, and two of the nine stomas were urinary diversions. Additionally, as 12 weeks is the average time it takes patients to become competent with stoma management, the authors could not demonstrate adjustment, or the average timeline to achieving it. Consequently, very little is known about the process of adjustment, the personal and external factors that influence it, or how long it takes for most people to come to terms with their perhaps permanently changed body.
Of course, some people adapt easily. Numerous patients with IBD, relieved of their relentless debilitating symptoms, find a new lease of life, with many realising—in retrospect—that they should have opted for surgery sooner. So why is it that some people adapt well, and some do not? What can be learned from those that do to help those that do not? How do we identify the patients in our care who are more likely to find the transition to living well with a stoma more challenging than others? The key word is transition—adjustment is a process, and cross-sectional studies that collect data at one moment in time demonstrate that psychosocial adjustment is possible, but do not explain the process of that adjustment. If we understood the personal attributes that inform how people adjust, we could develop assessment tools to help identify those more likely to find that adjustment challenging. If we understood the process of adjustment over time, we could develop interventions that support patients postoperatively in ways that suit their specific needs. Systematic reviews of research into adjustment to disease in patients with IBD (McCombie et al, 2013) and to permanent or temporary stomas due to IBD or bowel cancer (Carlsson et al, 2010) advocate the use of longitudinal research to capture adjustment, acknowledging that it is a process rather than a specific event (Walker et al, 2004).
Adaptation or adjustment can be defined as ‘a return to equilibrium after critical illness events or stressors’ (Moss-Morris, 2013:685), and in chronic inflammatory conditions may be framed around Taylor's (1983) cognitive adaptation model due to the emphasis on restoring psychological wellbeing, and acknowledgement that illness adjustment is a continuous process, necessitated by fluctuations (relapses, remissions, changes in levels of pain) over time. Poor adjustment to life with a stoma is reported as a reduced QoL affecting intimate and social relationships, self-esteem and employment (Camilleri-Brennan et al, 2003; Silva et al, 2003).
Several psychological factors are known to influence patient outcomes following stoma surgery for IBD. Resilience reduces stigma (Dibley et al, 2018c) and influences psychological thriving (Sirois and Hirsch, 2017). Illness perceptions and coping styles also impact on outcomes (Knowles et al, 2013), and coping style is a strong predictor of adjustment (McCombie et al, 2013). Younger patients cope less well initially, but improve over time (Savard and Woodgate, 2009), whereas older patients cope better initially, but do not progress significantly (Ma et al, 2007). Disgust trait (Haidt et al, 1994)—an individual's sensitivity to disgusting stimuli—also influences adjustment to colorectal disease and/or stoma (Notter and Burnard, 2006; Smith et al, 2007). Patients may also find it harder to adjust psychosocially to a temporary stoma, feeling unwilling to commit emotional energy to adapting to an impermanent situation (Smith et al, 2009; Dibley et al, 2018b).
Stoma leakage, odour and noise cause embarrassment, which impairs QoL (Mitchell et al, 2007) and contributes to feelings of stigma in people with IBD, disrupting social and emotional wellbeing and delaying adjustment (Dibley et al, 2018c); conversely, strong social support networks reduce stigma in IBD (Frohlich, 2014; Dibley et al, 2018c). Childhood learning of illness behaviours (Whitehead et al, 1992) and childhood socialisation regarding bodily functions affect adjustment, especially if stoma formation directly challenges ingrained expectations (Notter and Burnard, 2006; Dibley et al, 2018c).
These psychosocial factors may be important indicators of adjustment and having been explored individually in cross-sectional or retrospective studies, could be incorporated into a new tool for assessing adjustment to a stoma in patients with IBD, and repeating that assessment prospectively over time.
There is no single tool available for use in clinical practice to assess the impact of the identified psychosocial factors alongside more familiar measures of adjustment (for example, confidence in stoma management, attending work or school). Existing tools, typically used in cross-sectional research, measure adjustment to stoma (Oades-Souther and Olbrisch, 1984), stoma-related QoL (Prieto et al, 2005) and resilience (Wagnild and Young, 1993). All report small sample sizes and none contain the components proposed here to be useful in assessing adjustment—age, coping style, childhood socialisation, and disgust trait. None have used current recommended procedures for patient reported outcome measure (PROM) development (Rothrock et al, 2011), which includes drawing directly on patient experiences and perceptions to inform tool development: research into ‘adjustment’, therefore, remains medically focused and clinically led.
Future research
Early assessment of need and access to appropriate interventions following stoma surgery may facilitate a smoother transition with less disruption across many areas of patients' lives, thereby enhancing wellbeing. Suggestions for future research include:
Conclusion
Assessment of a patient's psychosocial response to stoma surgery would enable accurate identification of specific patient concerns and needs, and provision of appropriate support. Enhanced preoperative education delivered by experienced lay people, preoperative nurse-led education focused on individual patient need, linking to a ‘stoma buddy’, and community-based collaborative projects with key stakeholders are potential strategies that may be beneficial.
Improving patients' non-clinical QoL may promote patient wellbeing and reduce the burden on the NHS, particularly in geographic areas where specialist follow-up stoma care or IBD nurse services are less readily available.