Psychological needs and support following stoma surgery: exploring the perspectives of young adults and healthcare professionals

Stoma surgery is commonly described as a life-changing procedure, due to the radical bodily changes and related psychosocial challenges it brings about; especially so for individuals with Inflammatory Bowel Disease (IBD) who may undergo this surgery at a relatively young age. Although the psychological impact of stoma formation is emphasised in the literature, how stoma-related psychological needs are addressed remains unexplored. This study explores the perspectives of young adults with a stoma and healthcare professionals about access to psychological support within and beyond the healthcare system. In-depth interviews were conducted with 13 young adults with a stoma (aged 18-29 years) and 15 healthcare professionals (including colorectal surgeons, gastroenterologists, specialist nurses in IBD and stoma care, and general practitioners). Data collection and analysis were informed by constructivist grounded theory and narrative inquiry. Most young adults reported a positive transformation following stoma surgery, explicated through the concept of ‘biographical renewal’, which is characterised by physical relief from IBD symptoms and a reconfiguration of self and biography. Psychological distress, however, was sometimes found to co-exist alongside these transformations. Several barriers to the identification and management of psychological problems were identified on patient, professional, and systemic levels. Whilst peer support was recognised as a valuable support avenue, preference was expressed for these psychological needs to be met by healthcare services. Findings indicate the need for clinicians to encourage disclosure of psychological concerns following stoma surgery. The development of more effective care pathways, which include psychological services, as well as more age-appropriate peer support, are recommended to enhance access to psychological support for young adults with a stoma

Betwixt and between student and professional identities : UK medical students during COVID times

The COVID-19 pandemic lockdown in Spring 2020 brought about unprecedented disruption to medical education in the United Kingdom (UK). Medical students were encouraged to take up paid roles in the National Health Service to help with workforce shortages. This article explores medical students’ views and experiences of the COVID-19 pandemic vis-à-vis their professional identity formation. Semi-structured interviews were conducted with 22 medical students from all five undergraduate years in one UK medical school, between April and June 2020. Three themes were generated: (1) disruption to medical education involving suspension of clinical placements, cancellation of assessments and ceremonial markers; (2) decision-making around joining the clinical workforce, decisions which were influenced by students’ sense of professional obligation, perceived personal gains, and health and safety considerations; (3) experiences of working in clinical settings during the pandemic, including reflections about managing risks and challenges, learning on the job and becoming a better doctor. The findings provide evidence that the UK’s first lockdown destabilised many medical students’ expectations tied to their educational and career trajectory, requiring them to improvise to address gaps in learning and professional development. Taking on a paid healthcare role catapulted them into a liminal period, working in a space ‘betwixt and between’ a medical student and healthcare professional. This swift readjustment of roles and responsibilities accelerated their identity formation as ‘future doctors’. Support for medical students around negotiating such dual role is important in present and future public health crises.peer-reviewe

Betwixt and between student and professional identities: UK medical students during COVID times

The COVID-19 pandemic lockdown in Spring 2020 brought about unprecedented disruption to medical education in the United Kingdom (UK). Medical students were encouraged to take up paid roles in the National Health Service to help with workforce shortages. This article explores medical students’ views and experiences of the COVID-19 pandemic vis-à-vis their professional identity formation. Semi-structured interviews were conducted with 22 medical students from all five undergraduate years in one UK medical school, between April and June 2020. Three themes were generated: (1) disruption to medical education involving suspension of clinical placements, cancellation of assessments and ceremonial markers; (2) decision-making around joining the clinical workforce, decisions which were influenced by students’ sense of professional obligation, perceived personal gains, and health and safety considerations; (3) experiences of working in clinical settings during the pandemic, including reflections about managing risks and challenges, learning on the job and becoming a better doctor. The findings provide evidence that the UK’s first lockdown destabilised many medical students’ expectations tied to their educational and career trajectory, requiring them to improvise to address gaps in learning and professional development. Taking on a paid healthcare role catapulted them into a liminal period, working in a space ‘betwixt and between’ a medical student and healthcare professional. This swift readjustment of roles and responsibilities accelerated their identity formation as ‘future doctors’. Support for medical students around negotiating such dual role is important in present and future public health crises

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.peer-reviewe

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.peer-reviewe

Community-based interventions for the prevention and control of Cutaneous Leishmaniasis: A systematic review

We reviewed the evidence on community-based interventions for the prevention and control of cutaneous leishmaniasis (CL). Community initiatives tailored towards awareness and mobilisation are regarded as a priority area in the Neglected Tropical Disease Roadmap 2021–2030 by the World Health Organization. We searched nine electronic databases for intervention-based studies. Two independent reviewers screened and assessed the articles for methodological quality using predefined criteria. We conducted a meta-analysis using a random effects model, along with narrative synthesis. Thirteen articles were eligible for inclusion, of which 12 were quantitative studies (quasi-experimental with control group and pre-post interventions) and one qualitative study. All articles reported on health education interventions aimed at changing people’s knowledge, attitudes, and practices (KAP) in relation to CL. Participant groups included students, mothers, housewives, volunteer health workers, and residents in general. An increased score was recorded for all outcomes across all interventions: knowledge (SMD: 1.85, 95% CI: 1.23, 2.47), attitudes (SMD: 1.36, 95% CI: 0.56, 2.15), and practices (SMD: 1.73, 95% CI: 0.99, 2.47). Whilst our findings show that educational interventions improved people’s knowledge, attitudes, and practices about CL, we argue that this approach is not sufficient for the prevention and control of this disease. Knowledge does not always translate into action, particularly where other structural barriers exist. Therefore, we recommend the design of more innovative community-based interventions with a broader focus (e.g., stigma, financial barriers, and healthcare access

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

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.peer-reviewe

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

Abstract 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 sub-optimal 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 &gt;80%, that is, a mean of &gt;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’, e.g. useful everyday tips regarding clothing, making bag changes easier etc.; 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 peoples’ 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.<br/

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 ( = 4), Ethiopia ( = 6), and Sri Lanka ( = 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. [Abstract copyright: Copyright © 2022 Polidano, Parton, Agampodi, Agampodi, Haileselassie, Lalani, Mota, Price, Rodrigues, Tafere, Trad, Zerihun and Dikomitis.

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

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.peer-reviewe