Embracing a ‘new normal’: the construction of biographical renewal in young adults’ narratives of living with a stoma

Abstract

Stoma surgery can be a life‐changing procedure due to bodily changes and related psychological responses. Despite previous literature identifying unique challenges for young adults living with a long‐term condition, no studies have explored the biographical implications of stoma formation. Drawing on interviews with 13 young adults, aged 18–29 years, with a stoma resulting from inflammatory bowel disease, this article aims to generate new theoretical insights in understanding the process of biographical (re)construction and the wider implications of stoma formation among this group. Data analysis combined constructivist grounded theory and narrative analysis. Whilst two narratives display ‘biographical suspension’ characterised by a distancing of self from their stoma, the majority of narratives highlight positive transformations in the young adults’ conceptions of self; which we explain through the concept of ‘biographical renewal’. The liberating effects of stoma surgery allowed young adults to reclaim aspects of their pre‐illness selves, yet also reconfigure a new, altered sense of self, culminating in a ‘new normal’. However, psychological distress also co‐existed alongside these positive representations, revealing a tension that young adults attempt to reconcile through narrativising their experiences. Our findings have implications for the identification and management of the psychological needs of young people with a stoma.

Sustaining, Forming, and Letting Go of Friendships for Young People with Inflammatory Bowel Disease (IBD): A Qualitative Interview-Based Study

“…Other studies addressing the impact of long-term conditions reveal the importance of friends in mitigating the social difficulties, restrictions of the condition, and sense of isolation [ 62 , 63 ]. We found that while maintaining a sense of being “normal” and keeping pace with peers were important for many young people, they developed tactics and adaptions to work around the physical and emotional limitations imposed by their IBD, as found in other studies of young people with a long-term health condition [ 62 , 64 , 65 ].…”

Psychological issues affecting patients living with a stoma

“…Within each society, changes in body image are perceived differently as each social group has their own perceptions of health and illness, with accompanying issues and taboos (Chelvanayagam, 2014). While the body in health is often taken for granted, in the presence of illness, it brings the realization that it can no longer be relied on, but has 'failed' leaving the individual vulnerable to internal disharmony, and conflict, unable to maintain the role they once unthinkingly held (Sutherland et al 1952, Douglas 1966, Holden & Littlewood 1991, Bekkers et al 1996, Black 2000, Helman 2007, Black 2017. Polidano et al, 2019.…”

“…Patients report experiencing anxiety and fear of being 'found out' as no longer being able to fit within 'normal' behaviour, transgressing accepted patterns and practices for elimination. Such beliefs are cultural phenomena, but for many fear of social exclusion is part of the challenges faced by the individual as they try to find ways to modify their behaviour, hide what they see as their stigma and return to their culture and society from whence they came (Goffman 1968, Holden & Littlewood 1991, Black 2000, Kilic et al 2007, Black 2012, 2018. Polidano et al, 2019.…”

Access to Psychological Support for Young People Following Stoma Surgery: Exploring Patients’ and Clinicians’ Perspectives

“…This framework is based on the premise that “candidacy” is essential for patients to request a particular treatment, meaning that they must first recognize their symptoms as needing medical attention or intervention. Such recognition was found to be lacking among some of our participants (at least initially), largely due to the interpretation they assigned to their own distress—with some viewing it as transient and justifiable, and others accepting it as a reasonable price to pay for an improved health status (Polidano et al, 2020). This finding resonates with the claim that normalization of distress is common in the care of patients with a physical LTC (Coventry et al, 2011): as psychological symptoms are interpreted as a normal and understandable response.…”

“…Irrespective of their perception of the stoma, emotional distress (characterized by low mood, hopelessness, anger, and at times suicidal ideation) was reported by most young people shortly following surgery: with almost half claiming to have experienced psychological problems in the longer-term, manifesting in terms of low mood and/or anxiety. Daily challenges of living with a stoma—including leakage accidents, body image dissatisfaction and relationship concerns—were generally ascribed as the source of distress (Polidano et al, 2020). However, not all young people who reported psychological problems sought professional help, or had these concerns identified by their health care team.…”