Young people's priorities for the self-management of distress after stoma surgery due to inflammatory bowel disease: A consensus study using online nominal group technique.

INTRODUCTION: The aim of this study was to gain consensus among young people with a stoma due to inflammatory bowel disease (IBD) on the priorities for the content of an intervention for the self-management of stoma-related distress. The current identification and management of distress in young people with a stoma is often suboptimal in clinical settings and there is a need for improved support resources. METHODS: Two consensus group meetings were carried out via online video conferencing, using nominal group technique. Participants generated, rated on a Likert scale and discussed, topics for inclusion in a future self-management intervention. RESULTS: Nineteen young people, aged 19-33, with a stoma due to IBD took part in one of two group meetings. Participants were located across England, Scotland, and Northern Ireland. Twenty-nine topics were generated by participants, seven of which reached consensus of ≥80%, that is, a mean of ≥5.6 on a 7-point Likert scale. These were: receiving advice from young people with lived experience of stoma surgery; advice on/addressing concerns about romantic relationships, sex and intimacy; information about fertility and pregnancy related to stoma surgery; stoma 'hacks', for example, useful everyday tips regarding clothing, making bag changes easier and so forth; reflecting on and recognising own emotional response to surgery; tips on managing the stoma during the night; and processing trauma related to the illness and surgery journey. CONCLUSIONS: Findings extend previous research on young people's experiences of stoma surgery, by generating consensus on young people's priorities for managing distress related to surgery and living with a stoma. These priorities include topics not previously reported in the literature, including the need for information about fertility and pregnancy. Findings will inform the development of a self-management resource for young people with an IBD stoma and have relevance for the clinical management of stoma-related distress in this population. PATIENT OR PUBLIC CONTRIBUTION: Three patient contributors are co-authors on this paper, having contributed to the study design, interpretation of results and writing of the manuscript. The study's Patient and Public Involvement and Engagement advisory group also had an integral role in the study. They met with the research team for four 2-h virtual meetings, giving input on the aims and purpose of the study, recruitment methods, and interpretation of findings. The group also advised on the age range for participants. The views of young people with a stoma are the central component of the study reported in this paper, which aims to gain consensus among young people with an IBD stoma on their priorities for the content of a resource to self-manage distress related to stoma surgery.

Healthcare professionals' priorities for training to identify and manage distress experienced by young people with a stoma due to inflammatory bowel disease: a consensus study using online nominal group technique.

OBJECTIVES: Young people with a stoma due to inflammatory bowel disease (IBD) commonly experience distress; however, this is not always well managed in clinical settings. More effective support may/is likely to reduce the possibility of individuals experiencing sustained distress, which may engender depression or anxiety. This study aimed to gain consensus among a multidisciplinary group of healthcare professionals (HCPs) on priorities for training in the identification and management of distress in this population. One of the authors is a young person with a stoma. DESIGN: Participants were recruited through Twitter (X) and the researchers' clinical/research contacts. Two consensus group meetings were conducted using Nominal Group Technique, involving participants generating, discussing and rating on a Likert scale, topics for inclusion in an HCP training package. SETTING: Online video conferencing. Participants were located across England, with one based in the USA. PARTICIPANTS: Nineteen HCPs participated: three general practitioners, three stoma nurses, two IBD nurses, nine clinical psychologists and two gastroenterologists. RESULTS: Twenty-five topics were generated by participants; 19 reached consensus of ≥80%, that is, a mean of ≥5.6 on a 7-point Likert scale. These included: recognising and validating different levels of, and variation in, distress; tackling stigma and normalising having a stoma; everyday practicalities of stoma management, including food and sleep; opening and holding conversations about stoma-related distress; considering the impact of different cultural beliefs on adaptation after stoma surgery; training in simple techniques for gauging the patient's distress during clinical encounters; having conversations about body image; and myth-busting common fears, such as odour. CONCLUSIONS: This study is the first to identify HCP training priorities for managing stoma-related distress in young people. Consensus was reached for 19 topics, reflecting the varied needs of young people with a stoma. Findings will inform development of a training package for HCPs treating young people with IBD and a stoma.

Self-directed self-management interventions to prevent or address distress in young people with long-term physical conditions: A rapid review.

BACKGROUND: Comorbid distress in adolescents and young adults with physical long-term conditions (LTCs) is common but can be difficult to identify and manage. Self-directed self-management interventions to reduce distress and improve wellbeing may be beneficial. It is unknown, however, which intervention characteristics are successful in supporting young people. This rapid review aimed to identify characteristics of self-directed self-management interventions that aimed, in whole or part, to address distress, wellbeing or self-efficacy in this population. METHODS: A systematic search was conducted for relevant controlled studies in six databases. Data on study settings, population, intervention characteristics, outcome measures, process measures and summary effects were extracted. The risk of bias was assessed using the Cochrane Risk of Bias tool v1, and the strength of evidence was rated (informed by Grading of Recommendations, Assessment, Development and Evaluations). Patient and public involvement members supported the review process, including interpretation of results. The rapid review was registered with PROSPERO (ID: CRD42021285867). RESULTS: Fourteen studies were included, all of which were randomised trials. Heterogeneity was identified in the health conditions targeted; type of intervention; outcome measures; duration of intervention and follow-up. Three had distress, wellbeing or self-efficacy as their primary outcome. Four modes of delivery were identified across interventions-websites, smartphone applications, text messages and workbooks; and within these, 38 individual components. Six interventions had a significant benefit in mental health, wellbeing or self-efficacy; however, intervention characteristics were similar for beneficial and non-beneficial interventions. CONCLUSIONS: There is a paucity of interventions directly targeting distress and wellbeing in young people with physical LTCs. In those identified, the heterogeneity of interventions and study design makes it difficult to identify which characteristics result in positive outcomes. We propose the need for high-quality, evidence-based self-management interventions for this population; including (1) more detailed reporting of intervention design, content and delivery; (2) robust process evaluation; (3) a core outcome set for measuring mental health and wellbeing for self-management interventions and (4) consistency in follow up periods. PUBLIC CONTRIBUTION: Seven young people with an LTC were involved throughout the rapid review, from the development of the review protocol where they informed the focus and aims, with a central role in the interpretation of findings.

Negotiating agency and belonging during the first lockdown of the COVID-19 pandemic: an interview study among older adults in England, UK.

OBJECTIVES: The aim of this study was to explore the agency of older adults and their strategies to restructure ways of being and belonging in a rapidly and radically changed social environment during the UK's first COVID-19 lockdown in Spring 2020. DESIGN: Qualitative study consisting of semi-structured interviews. Findings were derived from a thematic analysis of interview transcripts. We also established a patient and public involvement and engagement group who advised on study design, interview topic guide and interpretation of findings. SETTING: Interviews were conducted online with older adults in the UK through their platform of choice in Spring 2020 in England, UK. PARTICIPANTS: We conducted 28 interviews (16 women, 12 men) with older adults over the age of 70 years. Our participants were mostly white, middle class adults. RESULTS: From the data, we constructed three strategies that older adults used to employ agency and create spaces of belonging in their social networks despite lockdown restrictions. First, participants created a sense of belonging by being 'good' members of society who were knowledgeable about COVID-19. Second, older adults created new ways to socially engage with the wider community. Finally, older adults actively restructured social networks to preserve a sense of belonging. CONCLUSIONS: Older adults are actively and creatively carving a space of belonging during the societal upheaval in response to the COVID-19 lockdown and public health restrictions. Rather than internalising potential exclusionary messages based on their age, older adults instead used their agency to reimagine and transform spheres of belonging.

Community Engagement in Cutaneous Leishmaniasis Research in Brazil, Ethiopia, and Sri Lanka: A Decolonial Approach for Global Health.

Cutaneous leishmaniasis (CL) is a parasitic skin disease endemic in at least 88 countries where it presents an urgent, albeit often "neglected" public health problem. In this paper, we discuss our model of decolonial community engagement in the ECLIPSE global health research program, which aims to improve physical and mental health outcomes for people with CL. The ECLIPSE program has four interlinked phases and underpinning each of these phases is sustained and robust community engagement and involvement that guides and informs all activities in ECLIPSE. Our decolonial approach implies that the model for community engagement will be different in Brazil, Ethiopia and Sri Lanka. Indeed, we adopt a critical anthropological approach to engaging with community members and it is precisely this approach we evaluate in this paper. The data and material we draw on were collected through qualitative research methods during community engagement activities. We established 13 Community Advisory Groups (CAGs): in Brazil (n = 4), Ethiopia (n = 6), and Sri Lanka (n = 3). We identified four overarching themes during a thematic analysis of the data set: (1) Establishing community advisory groups, (2) CAG membership and community representation, (3) Culturally appropriate and context-bespoke engagement, and (4) Relationships between researchers and community members. During our first period of ECLIPSE community engagement, we have debunked myths (for instance about communities being "disempowered"), critiqued our own practices (changing approaches in bringing together CAG members) and celebrated successes (notably fruitful online engagement during a challenging COVID-19 pandemic context). Our evaluation revealed a gap between the exemplary community engagement frameworks available in the literature and the messy, everyday reality of working in communities. In the ECLIPSE program, we have translated ideal(istic) principles espoused by such community engagement guidance into the practical realities of "doing engagement" in low-resourced communities. Our community engagement was underpinned by such ideal principles, but adapted to local sociocultural contexts, working within certain funding and regulatory constraints imposed on researchers. We conclude with a set of lessons learned and recommendations for the conduct of decolonial community engagement in global health research.

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

Psychological problems are common among people with inflammatory bowel disease (IBD) following stoma surgery. However, the ways in which stoma-related psychological needs are identified and addressed in health care settings remain unexplored. In this study, we investigated the perspectives of young people with a stoma and health care professionals about access to psychological support. Semi-structured interviews were conducted with young people with an IBD stoma (18-29 years, n = 13) and health care professionals (n = 15), including colorectal surgeons, gastroenterologists, specialist nurses in IBD and stoma care, and general practitioners in England. Data collection and analysis were informed by constructivist grounded theory. Three analytic categories were developed: "initiating support-seeking," "affirming psychological needs," and "mobilizing psychological support," which capture young peoples' trajectory to access psychological support. Based on the findings, we highlight the need for both patients and health care professionals to assign greater priority to the identification of psychological symptoms post-stoma surgery. More effective care pathways, which include responsive psychological services, would enhance access to psychological support for young people with a stoma.

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

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.

Self-harm in older adults: systematic review.

BACKGROUND: Self-harm is a major public health concern. Increasing ageing populations and high risk of suicide in later life highlight the importance of identification of the particular characteristics of self-harm in older adults.AimTo systematically review characteristics of self-harm in older adults. METHODS: A comprehensive search for primary studies on self-harm in older adults was conducted in e-databases (AgeLine, CINAHL, PsycINFO, MEDLINE, Web of Science) from their inception to February 2018. Using predefined criteria, articles were independently screened and assessed for methodological quality. Data were synthesised following a narrative approach. A patient advisory group advised on the design, conduct and interpretation of findings. RESULTS: A total of 40 articles (n = 62 755 older adults) were included. Yearly self-harm rates were 19 to 65 per 100 000 people. Self-poisoning was the most commonly reported method. Comorbid physical problems were common. Increased risk repetition was reported among older adults with self-harm history and previous and current psychiatric treatment. Loss of control, increased loneliness and perceived burdensome ageing were reported self-harm motivations. CONCLUSIONS: Self-harm in older adults has distinct characteristics that should be explored to improve management and care. Although risk of further self-harm and suicide is high in all age cohorts, risk of suicide is higher in older adults. Given the frequent contact with health services, an opportunity exists for detection and prevention of self-harm and suicide in this population. These results are limited to research in hospital-based settings and community-based studies are needed to fully understand self-harm among older adults.Declaration of interestNone.