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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. [ABSTRACT FROM AUTHOR]

Background: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long‐term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. Methods: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. Results: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high‐risk situations, leading to hypervigilance and paternalistic approaches to care. Conclusion: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden. Patient or Public Contribution: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write‐up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors. [ABSTRACT FROM AUTHOR]

Background: Documented inequalities in access to eye care for people with learning disabilities and/or autism are caused by poor uptake of primary eye care services, poor identification of eye problems, lack of signposting and reasonable adjustments of existing services, concerns about costs of care and the low priority historically given to these issues in eye care policy at a regional and national level. In 2019, the charity SeeAbility employed four eye care champions (ECCs) with lived experience of learning disability and/or autism to work in local communities in London and the Northwest of England. They provided peer‐to‐peer support on understanding the need for good eye health and engaged with policy makers, and learning disability, autism and eye care professionals at the local, regional and national levels to influence both the clinical practice of individual practitioners (within existing service/pathway models) and more widely to influence the commissioning of the Easy Eye Care pathway. This study explores the experiences of these ECCs. Methods: The study was conducted in April and May 2023. A case study approach was used to describe the experiences of the ECCs from March 2019 to March 2023. Data from structured interviews with the four ECCs and workload analysis were triangulated to provide a multifaceted understanding of this novel health promotion project. Findings: The ECCs found the role useful and reported that confidence in their practice and impact grew with time but they required ongoing support in the role. A good understanding of the promotional messages was reported. Developing a good network of contacts at an early stage, both people with learning disabilities and healthcare professionals, was key. Relationships with professionals were supportive and positive and a positive emotive response to their lived experience was reported in these interactions. Conclusions: From the perspective of the ECCs, the role is useful and beneficial. The work suggests some key recommendations for future development which include planning to build networks, support in presentation and communications skills and defining key messages and knowledge. Confidence of the ECCs builds with time in the role but also needs support the emotive impact of their lived experiences on audiences is highlighted. There is a need to evaluate how the programme is perceived by those who interact with it and how it changes behaviours which leads to better health outcomes. Accessible Summaries: People with learning disabilities are 10 times more likely than other people to have a problem with their eyes but less likely to get the eye care they need.This paper explains how people with a learning disability and/or autism are employed to tell other people with learning disabilities and/or autism, their supporters, health and care professionals and people who plan services about how important it is to get regular eye care. This job is an 'Eye Care Champion'.We share what the eye care champions did in their role, what worked well and what did not.We discuss how what we have learnt can help other people with learning disabilities and/or autism work as eye care champions and perhaps as champions for other areas of healthcare. [ABSTRACT FROM AUTHOR]

This paper explores the explanatory models of mental challenges among Black Africans in England. It argues that understanding these models is critical for providing culturally appropriate care to this population. The study employed qualitative methodology, and interpretative phenomenological analysis (IPA). Twelve mental health service users who are living in England and self‐identified as first or second‐generation Black Africans were purposively selected. The data were gathered using face‐to‐face semistructured interviews. Data were manually analysed in accordance with IPA concepts of searching for common, unique and idiosyncratic themes across transcripts. The findings revealed three themes Black Africans associated to their explanatory model of mental health challenges: complexities of migration, African‐centred worldview and negative life experiences. To help alleviate the Eurocentric nature of mental health practice in England, it is hoped that this explanatory model will become an integral part of mental health practice in England and around the world. [ABSTRACT FROM AUTHOR]

There is growing recognition, in the UK and internationally, of the huge costs of recurrent appearances of parents in local authority care proceedings. This paper contributes to pressing policy and practice concerns to reduce recurrence. It presents qualitative longitudinal data from the first study of fathers' experiences of recurrent care proceedings in England. Demonstrating the emotional impact of repeat proceedings and successive loss of children on fathers, in terms of grief, loss and shame, we highlight the trauma and abuse in their developmental histories. We consider complex connections between anger and shame for these fathers, including within the arena of family justice. With the use of literature on complex trauma, shame and parental disengagement, we explore ideas for re‐framing fathers', and professionals', resistance to engagement and for better understanding fathers' intense emotions. We suggest that the link between shame and complex trauma and the value of shame reducing, dignity promoting practice in response provide a valuable way forward for working with fathers. As is recognized to be the case for mothers, without holistic, empathic interventions to address the vulnerabilities of such fathers, the risks for children, mothers and fathers are unlikely to reduce. [ABSTRACT FROM AUTHOR]

Background: Current research has identified how ethnic minority women experience poorer health outcomes during the perinatal period. In the United Kingdom, specialist perinatal mental health services provide mental health treatment for women throughout the perinatal period. Service users have previously highlighted that perinatal services are hard to access and lack cultural sensitivity, whereas healthcare professionals have described limited opportunities and resources for developing cultural competency. Objectives: We explored the experiences of ethnic minority women with National Health Service (NHS) specialist perinatal teams and identified what culturally sensitive perinatal mental health care means to this group. Design: Individual semi‐structured interviews were conducted, and an interpretative phenomenological analysis framework was used to analyse the interview transcripts. Setting and Participants: Participants were recruited from NHS specialist perinatal teams and online via social media. Results: Six women were interviewed. Four group experiential themes central to the experiences of participants emerged: (1) strengthening community networks and peer support; (2) valuing cultural curiosity; (3) making sense of how culture, ethnicity, race and racism impact mental health; and (4) tailoring interventions to ethnic minority women and their families. Discussion and Conclusions: The findings capture how ethnic minority women experience specialist perinatal teams and offer insights into practising culturally sensitive care. Perinatal mental health professionals can support ethnic minority women by strengthening their access to community resources and peer support; being curious about their culture; helping them to make sense of how culture, ethnicity, race and mental health interact; and applying cultural and practical adaptations to interventions. Patient or Public Contribution: A Lived Experience Advisory Group (LEAG) of women from ethnic minority groups contributed to the design and conduct of this study. The LEAG had lived experience of perinatal mental health conditions and accessing specialist perinatal teams. The LEAG chose to co‐produce specific aspects of the research they felt fit with their skills and available time throughout five group sessions. These aspects included developing the interview topic guide, a structure for debriefing participants and advising on the social media recruitment strategy. [ABSTRACT FROM AUTHOR]

Background: Disability is often an essentialised and oversimplified concept. We propose refining this while incorporating the multidimensional nature of disability by increasing the use of existing survey questions and their corresponding data to enrich, broaden and inform understandings of disability. Methods: We combined patient and public involvement and engagement (PPIE) with focus groups and concept mapping to collaboratively map disability survey questions into conceptual models of disability with six members of the public with lived experiences of disability. Results: Using reflexive thematic analysis, we identified three qualitative themes and eight subthemes through a series of four PPIE activities: (1) understanding concepts of disability based on individual experience, subthemes: 1.1—preference for the biopsychosocial model, 1.2—'Reviewing' instead of mapping survey questions and 1.3—comparing questions to real life; (2) consistency between understanding needs and implementing adjustments, subthemes: 2.1—connecting preparation and operation, 2.2—inclusivity and adjustments in activities and 2.3—feedback for improving activities and (3) real‐world applications—targeted awareness raising, subthemes: 3.1—who, where, what and how to share activity findings and results, 3.2—sharing with human resource and equality, diversity and inclusion professionals. Conclusion: Members of the public who collaborated in these activities felt empowered, engaged and supported throughout this study. This approach offers a model for other researchers to cede power to the public over the research aspects typically reserved for researchers. Patient or Public Contribution: We involved members of the public with lived experience throughout this study—co‐design, co‐facilitation, collaboratively mapping the disability or disability‐related survey questions into conceptual models of disability, evaluation of the activities, co‐analysis and co‐authorship. [ABSTRACT FROM AUTHOR]

Aims: This study aimed to explore the perceptions of Meals on Wheels (MoWs) service users (SUs), and people who refer them to MoWs ('referrers'), with accessing and commencing the service in England, the barriers that might hinder service uptake, and what information would be valued when considering accessing the service. Methods: Semistructured interviews were conducted in May–July 2022 with seven SUs and 21 referrers, recruited from four MoWs providers across England. Data were analysed using inductive thematic analysis. Results: Participants indicated various pathways into the service, but referrers (family members) were more likely to be the ones enquiring about, and commencing, MoWs for SUs. Once an enquiry about MoWs had been made, the service was perceived as straightforward to set up. However, existing preconceptions and stereotypes were perceived to act as barriers to accessing MoWs. Information that participants deemed important to have available when deciding on whether to access MoWs related to the meals, the specific services provided, the reliability and flexibility of delivery and the cost of services. Conclusion: These findings could inform MoWs service providers' public awareness strategies about MoWs, to facilitate referrals to the service for adults with care and support needs. Patient or Public Contribution: An advisory group of people with lived experience of MoWs (users of the service and their family referrers) extensively discussed the findings of the research and advised on the implications and future dissemination steps. [ABSTRACT FROM AUTHOR]