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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]

Introduction: Associations between structural inequalities and health are well established. However, there is limited work examining this link in relation to mental health, or that centres public perspectives. This study explores people's experience and sense‐making of inequality in their daily lives, with particular consideration of impacts on mental health. Methods: We conducted a peer research study. Participants had to live in one of two London Boroughs and have an interest in inequalities and mental health. Using social media, newsletters, local organisations and our peer researchers' contacts, we recruited 30 participants who took photos representing their experience of inequality and discussed them during semi‐structured interviews. Data were analysed using reflexive thematic analysis. Results: Three themes were identified in this study: (1) inequalities are unjust, multilayered and intertwined with mental health. Accounts demonstrated a deep understanding of inequalities and their link to mental health outcomes, describing inequalities as 'suffering' and 'not good for anyone'. Financial, housing, immigration and healthcare problems exacerbated poor mental health, with racism, gender‐based violence and job loss also contributing factors for both poor mental health and experiences of inequality; (2) inequalities exclude and have far‐reaching mental health consequences, impacting personal sense of belonging and perceived societal value and (3) moving forwards—addressing long‐standing inequality and poor public mental health necessitated coping and resilience strategies that are often unacknowledged and undervalued by support systems. Conclusion: Lived experience expertise was central in this study, creating an innovative methodological approach. To improve public mental health, we must address the everyday, painful structural inequalities experienced by many as commonplace and unfair. New policies and strategies must be found that involve communities, redistributing resources and power, building on a collective knowledge base, to coproduce actions combatting inequalities and improving population mental health. Patient or Public Contribution: This study was peer‐led, designed and carried out by researchers who had experiences of poor mental health. Six authors of the paper worked as peer researchers on this study. [ABSTRACT FROM AUTHOR]

In the late 19th century, British women were struggling to enter the dental profession. From a young age, Lilian Lindsay was determined to become a qualified dentist. This paper describes her struggles and successes in attaining her goal, which was reached in 1895 when she became the first, female, qualified dentist. The paper then continues to highlight her subsequent career. [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]

This paper reports on data that is part of a wider evaluation of a small‐scale project that offers support to parents, children and families affected by alcohol and substance use. Using semi‐structured interviews and a focus group, the data in this paper explore mother's sense making of their substance use and their experiences of various professional interventions which have helped or hindered their personal journeys of recovery. Mothers' narratives suggested a self‐critical inner dialogue conceptualized as shame. Fear of stigma and a sense of shame derived from historical abuse and had a profound effect on how mothers perceived themselves and how they negotiated a web of professionals involved in their lives. Community projects with a focus on understanding mothers and their needs, and not the risk they posed to their children, were considered most supportive. Interventions working within a non‐judgemental and empathetic framework that fostered the importance of relationships and connection had a greater impact on mothers' long‐term recovery goals. [ABSTRACT FROM AUTHOR]

Introduction: Co‐production with communities is increasingly seen as best practice that can improve the quality, relevance and effectiveness of research and service delivery. Despite this promising position, there remains uncertainty around definitions of co‐production and how to operationalize it. The current paper describes the development of a co‐production strategy to guide the work of the ActEarly multistakeholder preventative research programme to improve children's health in Bradford and Tower Hamlets, UK. Methods: The strategy used Appreciative Inquiry (AI), an approach following a five‐step iterative process: to define (Step 1) scope and guide progress; to discover (Step 2) key issues through seven focus groups (N = 36) and eight in‐depth interviews with key stakeholders representing community groups, and the voluntary and statutory sectors; to dream (Step 3) best practice through two workshops with AI participants to review findings; to design (Step 4) a co‐production strategy building on AI findings and to deliver (Step 5) the practical guidance in the strategy. Results: Nine principles for how to do co‐production well were identified: power should be shared; embrace a wide range of perspectives and skills; respect and value the lived experience; benefits should be for all involved parties; go to communities and do not expect them to come to you; work flexibly; avoid jargon and ensure availability of the right information; relationships should be built for the long‐term; co‐production activities should be adequately resourced. These principles were based on three underlying values of equality, reciprocity and agency. Conclusion: The empirical insights of the paper highlight the crucial importance of adequate resources and infrastructure to deliver effective co‐production. This documentation of one approach to operationalizing co‐production serves to avert any misappropriations of the term 'co‐production' by listening to service users, stakeholders and other relevant groups, to develop trust and long‐term relationships, and build on the learning that already exists amongst such groups. Patient or Public Contribution: The work was overseen by a steering group (N = 17) of individuals, both professional and members of the public with experience in undertaking co‐production, and/or with some knowledge of the context of the two ActEarly field sites, who provided regular oversight and feedback on the AI process. [ABSTRACT FROM AUTHOR]

Watchful waiting is a concept that is traditionally not associated with severe and enduring mental illness. This paper, however, boldly argues that the concept could be used as a ground‐breaking and accessible antidote to the perceived inequality experienced by black service users experiencing both mild and severe mental illnesses in England. The novel concepts proposed in this paper are not intended to be consensual, but rather uncompromising to provoke critical thinking in mental health practice. A conceptual framework for watchful waiting in mental health is suggested. [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]

When young people are sexually exploited, parents and professionals alike can feel uncertain about how to balance the need to protect the child's rights to agency and autonomy while also reducing the risk of harm. Despite the shared interest in keeping young people safe, there remains a substantial gap in the research literature about how practitioners engage parents to increase capacity to safeguard their children, particularly within the context of a child protection system ill‐equipped to address forms of extrafamilial harm such as child sexual exploitation. This paper aims to contribute to understanding how professionals effectively engage parents by drawing upon evidence from research evaluations of two programmes in rural/urban North and urban South locations in England, both providing specialist support to parents/carers of sexually exploited children and young people. Through interrogating elements of effective support work evidenced across both programmes, a set of emerging key themes are presented, proposing that parent support and engagement can create a 'virtuous' cycle, whereby families are strengthened and are better able to protect their children from sexual exploitation and other forms of extrafamilial harm. [ABSTRACT FROM AUTHOR]

The present paper explores psychological processes that underpin the success of community change in the context of urban regeneration schemes. We adopt a social identity approach to develop an understanding of the ways in which social identity dynamics may impact upon peoples' experiences of regeneration, and what influence these identity processes have on the creation of new communities. Qualitative interviews, using thematic analysis as an analytic technique, were conducted with community members (n = 14) in a recently (2001–2011) regenerated area in the South‐West of England. Three overarching themes were identified: Patterns of identification, willingness to engage, and the notion of regeneration as an event. The research overall highlights the central role of group‐based identity in understanding the processes of regeneration and how this is experienced by different community members. Findings are discussed in relation to the impact regeneration schemes have on community members' sense of collective self, unity, and engagement. The research highlights the pivotal role of social identity processes in delivering successful and sustainable strategies of urban regeneration. [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]

This article reports findings from a study which sought to offer primacy to the voice of the child, using narrative approaches to encourage children and young people to share their lived experiences of neglect. Using a constructivist approach, this paper explores the relationship between the voice of the child and their narrative of neglect. Drawing on the notion of 'family narrative', the discussion examines how children's views are constructed and reconstructed through the process of telling. This research documents that whilst practitioners seek to present the authentic voice of the child, our understanding of 'voice' should be problematized to take account of the fact that it is mediated through a number of filters and lenses. By attending to the voice of the child in the context of their narrative, practitioners may move closer to understanding the lived experience of the individual by exploring feelings, motivations and the myriad of factors which may influence how and for what purpose voice is shared. Engagement with the voice of their child in the context of their narrative, facilitates the development of a social work meta‐narrative to inform effective intervention. [ABSTRACT FROM AUTHOR]

In 2021, Birmingham County Football Association (BCFA) in partnership with Newman University carried out a quantitative online review to assess coaches, volunteers, parents and young people's understanding of safeguarding information, policies and procedures in relation to football. This paper examines the findings from the children (aged 5–11) and young people (aged 12–17) using the Six Principles of Safeguarding to assess the current safeguarding measures in place to protect children and young people (CYP) playing grassroots football. The review found that whilst most CYP felt safe when playing organised football, there were some concerns raised from the young people in relation to angry parents, abuse and racism. Most children in both groupings had heard of the term safeguarding, but fewer had heard of the term welfare, and struggled to explain what welfare meant. A key finding and concern is that many CYP are not aware of the role of the Club Welfare Officer at their football club or that this might be someone to whom they can disclose issues concerning them. Furthermore, it became evident that further research, awareness raising and implementation of listening to and acting on children's voices needs to be fully embedded into safeguarding practice in children and young people's organised football. [ABSTRACT FROM AUTHOR]

Friendship is a central focus in children's lives and is important for healthy development. During the Covid‐19 pandemic, children experienced restrictions on their interactions with friends. This research heard the voices of 10 children (7–11 years) in England regarding their friendships, drawing on data collected through creative participatory methods including drawings, photography and collages, and accompanying unstructured interviews. Findings provide new insights into how children endeavoured to maintain their friendships through virtual interactions, street/doorstep visits, and artwork, and how friendship disruption affected their well‐being. This paper argues for educators to heed the implications for the period of 'Covid recovery'. [ABSTRACT FROM AUTHOR]

This study explores the ways in which African Caribbean families communicate with each other and the outside world in the context of post migration. The Big and Small Story in narrative inquiry was used to make sense of the data as it pays attention to the manner and style in which this story is told, and what identities are being claimed post migration. The key findings are set out using three archetypal positions: the trickster, passer/conformer and resister/revolutionary. These were used to capture different ways people responded to power and identities claimed within their daily life. Findings in part of reflect Du Bois' concept of double consciousness to consider the way black people carry out their negotiations with power. These African Caribbean participants were having to think about what is acceptable to the power base and how can this be negotiated. This paper is intended to be helpful to practitioners interested in indigenous knowledge of self and its clinical implications. [ABSTRACT FROM AUTHOR]

The aim of this paper was to explore the experiences of perceived prejudices faced in England by Black African mental health nurses. Purposive sampling was used to identify five nurses from sub‐Saharan Africa. They were interviewed using face‐to‐face semi‐structured interviews. Data were analysed using interpretative phenomenological analysis (IPA). The findings were reported under two superordinate themes: Judging a book by its cover and opportunities. The findings showed that Black African nurses experience deep‐rooted discrimination and marginalisation. Aside from that, because of their ethnicity and the fact that they speak English as a second language, they face discrimination and have difficulty achieving leadership roles. These findings provide key stakeholders, such as nursing trade unions and professional associations, as well as NHS employers, with the opportunity to act to counter hegemony in the NHS and recognise that discriminatory and racially related barriers hinder Black African nurses from reaching their full professional potential. [ABSTRACT FROM AUTHOR]

Objectives: This paper considers home from the perspective of people living with dementia supporting ongoing discourse around ageing in place and the significance of creating more inclusive communities. Methods: Forty‐six home tour interviews led by people living with dementia were conducted in England and Scotland to better understand the connectivity between home and neighbourhood for people living with dementia. These interviews used a range of participatory and creative approaches including video, photographic images and in situ interviews. Data were analysed via reflexive thematic analysis. Results: Three themes were identified in data analysis. 1. Connected home and neighbourhood, where participants revealed the dynamic relationship between home and neighbourhood; 2. Practices of home, where participants discussed the everyday nature of their homes and routines; and 3. Displaying home and family, which reflected participant's biographical homes in the context of living with dementia. Discussion: The findings show that home holds multiple meanings for people living with dementia. For example, home is understood as a part of the neighbourhood and an extension of the home space into gardens and backyards, thus extending existing discourses that solely focus on the inside of people's homes. For people living with dementia, homes are also sites of negotiation and renegotiation where new meanings are created to reflect the changing nature and context of the home. There is not one fixed solution to these issues. Support and understanding for people living with dementia will need to evolve to adapt to the shifting dynamics and multiple meanings of home. Key points: Neighbourhoods begin within homes and are interconnected. This relationship has important implications for the discourse of ageing in place.'Home' for people living with dementia holds the same meanings for those without dementia, but with some notable differences. It is important to recognise the shifting dynamics of home and to recognise the complexity of home in the context of dementia. There is not a fixed solution to the challenges of ageing at home with dementia, but support and understanding need to evolve alongside people with lived experience.Homes are a site of renegotiation where new meanings are created to reflect the changing nature of home and the lived experience of home for those with dementia.The study has provided findings through innovation in the research design. The employment of creative methods enabled people living with dementia to participate in sharing their own narratives of home.The work provides evidence where there is a current gap in understanding 'what matters' about home for people living with dementia. [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: Meals on Wheels (MoWs) could help adults with care and support needs continue living independently. However, many people are not aware that the service still exists in England, or that it could provide benefits beyond nutrition. Objective: Working with an existing advisory group of six people with lived experience of MoWs (an adult who uses MoWs and people who have referred a family member to MoWs), this work aimed to co‐produce knowledge translation resources (two infographics and a film) to raise awareness of MoWs and their benefits. Methods: Four participatory online workshops were held in May–July 2023, to establish perceived high‐priority themes from recent qualitative research that should be included in the resources, and preferences about message content, language, design, and how the resources should be disseminated. Findings: The most important perceived MoWs benefits that the group agreed should be included in the resources were: the importance of a nutritious meal that requires no preparation; the service's reliability/consistency; the importance of interactions in reducing social isolation, and; the ease to commence the service. The group highlighted the need for language to be nontechnical and invitational, and for images to relate to respective messages, and be inclusive of anyone who could benefit from MoWs. Several routes for dissemination were proposed, highlighting the need to disseminate to the NHS, social care organisations and community groups. Conclusion: These co‐produced resources could enhance adult social care delivery in England, as raising awareness of MoWs and their benefits could increase referral rates, so that more adults with care and support needs can benefit from the service. Patient or Public Contribution: An advisory group of people with lived experience of MoWs (users of the service and family referrers) participated in the workshops, extensively discussed the findings of earlier research, co‐produced the knowledge translation resources, and advised on the implications and future dissemination steps. The group also provided informal feedback on a draft of this manuscript. [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]

Introduction: Head and neck cancer (HNC) is the eighth most common cancer in the United Kingdom. Survival rates improve when the cancer is diagnosed at an early stage, highlighting a key need to identify at‐risk patients. This study aimed to explore opportunistic HNC identification and referral by community pharmacists (CPs) using a symptom‐based risk assessment calculator, from the perspective of patients with a diagnosis of HNC. Methods: Purposive sampling was used to recruit patients from the HNC pathway in three large teaching hospitals in Northern England. Qualitative methodology was used to collect data through an iterative series of semistructured telephone interviews. Framework analysis was utilised to identify key themes. Results: Four main themes were constructed through the analytic process: (1) HNC presentation and seeking help; (2) the role of the CP; (3) public perception of HNC and (4) the role of a symptom‐based risk calculator. Participants agreed that CPs could play a role in the identification and referral of suspected HNCs, but there were concerns about access as patients frequently only encounter the medicine counter assistant when they visit the pharmacy. HNC symptoms are frequently attributed to common or minor conditions initially and therefore considered not urgent, leading to delays in seeking help. While there is public promotion for some cancers, there is little known about HNC. Early presentation of HNC can be quite variable, therefore raising awareness would help. The use of a symptom‐based risk calculator was considered beneficial if it enabled earlier referral and diagnosis. Participants suggested that it would also be useful if the public were made aware of it and could self‐assess their symptoms. Conclusion: In principle, CPs could play a role in the identification and referral of HNC, but there was uncertainty as to how the intervention would work. Future research is needed to develop an intervention that would facilitate earlier identification and referral of HNC while not disrupting CP work and that would promote HNC and the risk calculator more widely. Patient or Public Contribution: Patient and public involvement and engagement (PPIE) was integrated throughout the project. Initially, the proposal was discussed during a Cancer Head and Neck Group Experience (CHANGE) PPIE meeting. CHANGE was set up to support HNC research in 2018. The group is composed of seven members (four female, three male) with an age range of 50–71 years, who were diagnosed at Sunderland Royal Hospital. A patient representative from the University of Sunderland PPIE group and a trustee of the Northern HNC Charity were recruited as co‐applicants. They attended project management group meetings and reviewed patient‐facing documentation. [ABSTRACT FROM AUTHOR]

Background: Although kidney transplantation is the best treatment for kidney failure, scarce research has examined its effects on physical activity, physical function and quality of life. Objectives: To investigate the experiences of a group of adults living with advanced kidney disease focusing on quality of life, physical activity and function and to see how findings differ in a group of kidney transplant recipients. Approach: Individual semi‐structured interviews were conducted with adults with advanced kidney disease (n = 10; 70.5 ± 8.9 years) and adults who had received a kidney transplant (n = 10; 50.7 ± 11.5 years; transplant age: 42.7 ± 20.9 months). Interviews were transcribed verbatim, thematically analysed and composite vignettes developed. Findings: Individuals with advanced kidney disease described a sense of loss and alteration to their life plans. Kidney transplant recipients reported increased freedom, independence and a return to near normality, with improved quality of life, physical activity and function compared with their pre‐transplant lives. However, transplant recipients also described living with anxiety about the health of their transplant and fear it may fail. Conclusion: Whilst adults living with advanced kidney disease often experience a reduced quality of life, physical activity and function, kidney transplantation can help facilitate a return to pre‐disease levels of physical activity, physical function and quality of life. However, transplant recipients also reported living with anxiety around their new kidney failing. This study demonstrates the variability in the lived experiences of adults living with advanced kidney disease or a kidney transplant and highlights the need for patient‐centred care. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic has been associated with an unprecedented number of critical care survivors. Their experiences through illness and recovery are likely to be complex, but little is known about how best to support them. Aim: This study aimed to explore experiences of illness and recovery from the perspective of survivors, their relatives and professionals involved in their care. Study design: In‐depth qualitative interviews were conducted with three stakeholder groups during the first wave of the pandemic. A total of 23 participants (12 professionals, 6 survivors and 5 relatives) were recruited from 5 acute hospitals in England and interviewed by telephone or video call. Data analysis followed the principles of Reflexive Thematic Analysis. Findings: Three themes were generated from their interview data: (1) Deteriorating fast—a downhill journey from symptom onset to critical care; (2) Facing a new virus in a hospital—a remote place; and (3) Returning home as a survivor, maintaining normality and recovering slowly. Conclusions: Our findings highlight challenges in accessing care and communication between patients, hospital staff and relatives. Following hospital discharge, patients adopted a reframed 'survivor identity' to cope with their experience of illness and slow recovery process. The concept of survivorship in this patient group may be beneficial to promote and explore further. Relevance to clinical practice: All efforts should be made to continue to improve communication between patients, relatives and health professionals during critical care admissions, particularly while hospital visits are restricted. Adapting to life after critical illness may be more challenging while health services are restricted by the impacts of the pandemic. It may be beneficial to promote the concept of survivorship, following admission to critical care due to severe COVID‐19. [ABSTRACT FROM AUTHOR]

Background: Shame can be a powerfully aversive emotion that is associated with a wide variety of mental health difficulties including non‐suicidal self‐injury (NSSI). This study used a novel mixed‐methods design (Qualitative Experiential Sequence Tracking; QUEST) to investigate the experiences of shame in a sample of individuals who self‐injure. Methods: Six participants received prompts to complete brief online diaries three times per day over a period of 2 weeks. These diaries captured information about the experience of negative emotions, especially shame. Participants then underwent an individualised qualitative interview about their experiences over the previous 2 weeks. Results: Thematic analysis suggested that participants experienced shame as a social and relational emotion. Further themes included shame being associated with feelings of failure, being trapped, dangerous or contaminated, and hidden or exposed. The phenomenology of shame, and coping with shame, were also themes. NSSI could occur as a response to shame, but often shame was triggered or exacerbated by the responses of others to NSSI. Conclusions: Consistent with previous research, shame was described as an aversive emotion occurring within interpersonal and broader societal contexts and involving a negative self‐focus. A lack of compassion or understanding in response to NSSI, or anticipation of negative responses from others often triggered more intense shame than the NSSI itself. Future studies could use QUEST methodology with more diverse samples or different populations to further investigate experiences of shame. [ABSTRACT FROM AUTHOR]

Background: Due to the global pandemic, governments have enforced household isolation and social distancing to reduce infection and mortality rate. However, the impact of prolonged enforced isolation for older people who are prone to social isolation and loneliness has yet to be understood. Objectives: A longitudinal study to understand the lived experience of people aged 70 and older, living in England during COVID‐19 restrictions. Methods: All participants completed five qualitative telephone interviews from 20 April to 7 July 2020. The majority completed individual interviews (n = 13), whilst two participants completed these interviews as a couple. Interviews were audio‐recorded, transcribed verbatim and thematic analysis completed from the perspective of hermeneutic phenomenology. Results: Three themes included (1) engagement and confusion with government restrictions; (2) socialisation through virtual platforms and opportunistic physical social contact; and (3) accessing health care during COVID‐19 restrictions. Conclusion: Older people are committed to following government restrictions, and government campaigns need to consider the potential impact of placing an emphasis on avoiding healthcare services. Virtual platforms are supportive but not sufficient to reduce social isolation and loneliness of older people. Thus, nurses supporting older people living in the community need to understand these concepts to provide holistic care and support older people's mental and physical health. Implications for practice: Nurses are ideally placed to support older people to understand the current government restrictions, when to attend acute healthcare services or to engage virtually with healthcare appointments, and to discuss the risks of physically socialising with others. [ABSTRACT FROM AUTHOR]

Adoption is the preferred form of permanence for young children in care in England who are unable to live with their birth family or relatives. However, there have been growing concerns about the use of adoption, particularly in cases where birth parents have not given their consent. Despite concerns, there has been little research into birth parents' views of consent in adoption. This article reports on the experiences of 12 birth mothers and 2 birth fathers whose children were adopted from care in England. Birth parents' views on consent changed throughout the adoption process. They reported that care proceedings could be traumatic, and they did not always understand what was happening. There was a disparity in the quality of legal advice and social work support that birth parents received. The findings raise questions for practice around the level of support birth parents receive during and after care proceedings and highlight the importance of good quality support. [ABSTRACT FROM AUTHOR]

Introduction: The social and economic consequences of COVID‐19 have the potential to affect individuals and populations through different pathways (e.g., bereavement, loss of social interaction). Objective: This study adopted a solicited diary method to understand how mental health was affected during England's first lockdown. We also considered the experiences of diary keeping during a pandemic from the perspective of public participants. Methods: Fifteen adults older than 18 years of age were recruited from northwest England. Diarists completed semistructured online diaries for 8 weeks, which was combined with weekly calls. A focus group captured participants' experiences of diary keeping. Findings: Four key factors influenced mental health, which fluctuated over time and in relation to diarists' situations. These concerned navigating virus risk, loss of social connections and control and constrictions of the domestic space. Diarists also enacted a range of strategies to cope with the pandemic. This included support from social networks, engagement with natural environments, establishing normality, finding meaning and taking affirmative action. Conclusion: Use of diary methods provided insights into the lived experiences of the early months of a global pandemic. As well as contributing evidence on its mental health effects, diarists' accounts illuminated considerable resourcefulness and strategies of coping with positive effects for well‐being. While diary keeping can also have therapeutic benefits during adversity, ethical and practical issues need to be considered, which include the emotional nature of diary keeping. Public Contribution: Members of the public were involved in interpretation of data as well as critiquing the overall diary method used in the study. [ABSTRACT FROM AUTHOR]

Although disgust is recognized as a common and prominent emotion in healthcare, little is known about how healthcare professionals understand, experience and conceptualize disgust. The aim of the study was to gain an in‐depth understanding of how nursing and midwifery students experience, understand and cope with disgust in their clinical work. Interviews were transcribed verbatim and analysed using interpretative phenomenological analysis (IPA). Six participants (all women: two nursing students, four midwifery students) from a university in the South of England were interviewed. Four superordinate themes with eight subthemes were identified. Overall, findings suggest that participants experience both moral and physical disgust; however, they find it difficult to talk about and use other terms to describe their experience. Findings are discussed through the lens of social identity theory, to understand the relevance of professional identity and how this might further maintain the disgust taboo. The strategies participants have developed in order to cope with disgust are explored and understood within the current healthcare climate. Future research should focus on ways of addressing the experience of disgust by healthcare professionals in order to improve the quality of care provided, especially in the climate of the COVID‐19 crisis. [ABSTRACT FROM AUTHOR]

Accessible Summary: In the UK very few people with learning disability and/or autism and their family‐carers have a paid job although a lot of them may wish to work. National plans from the Government have not helped to change this.This article talks about a consultation we did on adults with learning disabilities and/or autism who attend day centres and their family‐carers. We asked about their current situation, their employment and the barriers to work.We found out that very few people with learning disabilities and/or autism or their family‐carers were employed. We found that there were lots of things stopping people with learning disabilities and/or autism and family‐carers from being able to work.We conclude that disability theories like the "social model of disability" need to go back to looking at inclusion, citizenship and independence, based on the real life experience of people with a learning disability. The government needs to provide strong plans to help people with learning disabilities and/or autism and family‐carers get into work. "Co‐production" networks should be set up between people with learning disabilities and families to support employment. Background: Only 5.9% of working adults with a learning disability are in paid employment and their family‐carers are similarly likely to be unemployed, as they continue to take on an extended caring and advocacy role as the welfare state retreats. Despite social policy efforts to stimulate employment for people with a learning disability, there has been little or no progress. Changes in the language of welfare benefit departments seek to use the words once heralded as success for the Disability rights activists and proponents of the social model: such as Inclusion, independence and citizenship. A new definition of the social model of disability utilising Hannah Arendt needs to redefine the "private" sphere of the lived experience of people with a learning disability to allow for a better understanding of the inter‐dependencies that exist between people with a learning disability, their family carers and a wider support network. Materials and Methods: Empirical data were collected in a mixed methods study while undertaking a consultation on the future of day services for people with a learning disability in a Local Authority in the north of England, UK. Results: The results reveal high levels of inter‐dependence between people with a learning disability and their carers, combined with the continued financial struggle as a lived experience of caring. The study found that barriers in providing care and support restrict the rights of people with a learning disability and their carers to secure employment. Conclusions: There is a need to reconceptualise the social model of disability to more closely resonate with the lived experiences of people with a learning disability and their carers. A newly revised theoretical approach should incorporate the "private" sphere of live acknowledging the inter‐dependent, co‐produced relationships, between people with a learning disability and their carers to support and enable employment for both people with a learning disability and their carers under the Care Act 2014 (Department of Health, 2014). [ABSTRACT FROM AUTHOR]

Purpose: To investigate the clinical perspectives and experiences of therapists when engaging in direct dialogue with auditory hallucinations. Method: Therapist accounts were explored via a qualitative study nested within a pilot randomized controlled trial of a novel intervention for supporting distressed voice‐hearers (Talking with Voices). Five therapists were involved, none of whom had substantive previous experience of the technique. All agreed to take part in two semi‐structured, in‐depth interviews which were arranged prior to delivering therapy and again after therapists had experience of conducting dialogues. Data were analysed using inductive thematic analysis. Results: Participants described their impressions of seeking to improve the relationship between voice(s) and voice‐hearer using dialogue. The findings are organized within three main themes and associated subthemes: (1) Commitment to delivery (professional values, mentorship, professional growth); (2) Communication and collaboration (therapeutic alliance, relationships with voices, managing clinical perceptions); and (3) Challenges of delivery (client/voice engagement, impact of trauma, systemic issues). A series of recommendations are derived from the findings to support implementation and guide the practice of therapists undertaking dialogue work with clients who hear voices. Conclusion: Despite clinical challenges, therapists also identified professional gains from conducting their work. Their accounts demonstrate that it is possible for practitioners with no previous formal experience to engage in direct communication with voices within a context of appropriate training and supervision. Practitioner points: Therapists with no previous experience of dialogue work can be trained and supported to verbally engage with the voices heard by people experiencing psychosis.Therapeutic alliance and therapist values are important components of successful therapy.Confidence for dialoguing with voices can be increased through drawing on therapist's existing transferable clinical skills.The emotional and practical needs of therapists undertaking such work should be addressed through training and regular group supervision. [ABSTRACT FROM AUTHOR]