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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]

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: Globally, it is estimated that one in three adults live with two or more long‐term conditions (multiple long‐term conditions, MLTCs), that require self‐management. People who experience socioeconomic deprivation face significant health inequalities due to a range of interrelated characteristics that lead to a lack of resources and opportunities. Previous research with underserved populations indicate low levels of trust towards primary care providers and potential barriers for developing patient‐healthcare professional relationships. The purpose of this paper is to explore the barriers and facilitators to self‐managing MLTCs, amongst people who experience socioeconomic deprivation. Methods: Semistructured one‐to‐one interviews with adults (n = 28) living in London and Sheffield, United Kingdom with MLTCs who are experiencing socioeconomic deprivation. Participants were recruited through general practices, community channels and social media. Data were analysed in NVivo using reflexive thematic analysis methods. Findings: Four analytical themes were developed: (1) challenges in accessing healthcare services, financial assistance, and cultural awareness; (2) empowerment and disempowerment through technology, including digital exclusion, and use of technology; (3) impact and causes of exclusion on self‐management, including social isolation, area‐based and economic exclusion, and health‐related stigma and (4) adapting self‐management strategies, including cost‐effective, and culturally/lifestyle appropriate strategies. Conclusions: Future health interventions and services need to be developed with consideration of the combined complexities of managing MLTCs while experiencing socioeconomic deprivation. Increased awareness in practitioners and commissioners of the complexities surrounding the lives of people experiencing socioeconomic deprivation, and the need for targeted strategies to promote self‐management of MLTCs are of great importance. Patient or Public Contribution: A patient advisory group contributed to all stages of the study, including providing important feedback on study documents (topic guides and recruitment materials), as well as providing critical insights surrounding the interpretation of interview data. [ABSTRACT FROM AUTHOR]

Introduction: In England, primary care networks (PCNs) offer opportunities to improve access to and sustainability of general practice through collaboration between groups of practices to provide care with a broader range of practitioner roles. However, there are concerns that these changes may undermine continuity of care. Our study investigates what the organisational shift to PCNs means for continuity of care. Methods: The paper uses thematic analysis of qualitative data from interviews with general practitioners and other healthcare professionals (HCPs, n = 33) in 19 practices in five PCNs, and their patients (n = 35). Three patient cohorts within each participating practice were recruited, based on anticipated higher or lower needs for continuity of care: patients over 65 years with polypharmacy, patients with anxiety or depression and 'working age' adults aged between 18 and 45 years. Findings: Patients and clinicians perceived changes to continuity in PCNs in our study. Larger‐scale care provision in PCNs required better care coordination and information‐sharing processes, aimed at improving care for 'vulnerable' patients in target groups. However, new working arrangements and ways of delivering care in PCNs undermine HCPs' ability to maintain continuity through ongoing relationships with patients. Patients experience this in terms of reduced availability of their preferred clinician, inefficiencies in care and unfamiliarity of new staff, roles and processes. Conclusions: New practitioners need to be effectively integrated to support effective team‐based care. However, for patients, especially those not deemed 'vulnerable', this may not be sufficient to counter the loss of relationship with their practice. Therefore, caution is required in relation to designating patients as in need of, or not in need of continuity. Rather, continuity for all patients could be maintained through a dynamic understanding of the need for it as fluctuating and situational and by supporting clinicians to provide follow‐up care. Patient and Public Involvement (PPI): A PPI group was recruited and consulted during the study for feedback on the study design, recruitment materials and interpretation of findings. [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]

Background: Big data research requires public support. It has been argued that this can be achieved by public involvement and engagement to ensure that public views are at the centre of research projects. Researchers should aim to include diverse communities, including seldom‐heard voices, to ensure that a range of voices are heard and that research is meaningful to them. Objective: We explored how researchers involve and engage seldom‐heard communities around big data research. Methods: This is a qualitative study. Researchers who had experience of involving or engaging seldom‐heard communities in big data research were recruited. They were based in England (n = 5), Scotland (n = 4), Belgium (n = 2) and Canada (n = 1). Twelve semistructured interviews were conducted on Zoom. All interviews were audio‐recorded and transcribed, and we used reflexive thematic analysis to analyse participants' experiences. Results: The analysis highlighted the complexity of involving and engaging seldom‐heard communities around big data research. Four themes were developed to represent participants' experiences: (1) abstraction and complexity of big data, (2) one size does not fit all, (3) working in partnership and (4) empowering the public contribution. Conclusion: The study offers researchers a better understanding of how to involve and engage seldom‐heard communities in a meaningful way around big data research. There is no one right approach, with involvement and engagement activities required to be project‐specific and dependent on the public contributors, researchers' needs, resources and time available. Patient and Public Involvement: Two public contributors are authors of the paper and they were involved in the study design, analysis and writing. [ABSTRACT FROM AUTHOR]

Background: Co‐production is predicated on equal power‐sharing and responsibility in research partnerships. However, relatively few accounts exist that explore the subjective experience of how co‐researchers achieve such equality, from the perspectives of public contributors and researchers. Aim: This paper aims to provide a unique insight into the process of co‐production, by weaving personal reflections with principles to evaluate the impact arising from co‐produced knowledge. It is based upon participatory research that was initiated by a 'lay' person, on behalf of a community organization, seeking support for Somali families who are affected by autism. The paper explores the evolving partnerships that began with community theatre and qualitative research and leading to extensive dissemination and impact, all of which has been jointly owned and negotiated by the co‐researchers and community organizations. Discussion: Initially, this paper reflects on the process, drawing on principles defined for co‐production in health research and combining it with the co‐researcher's personal reflections of their experiences as insiders and outsiders, stepping in and out of each other's worlds. The value of reciprocity, flexibility and continuous reflection is illustrated. The latter part of the paper explores the impact of this co‐produced knowledge using a theoretical framework, to assess the specific impacts and its broader transformative potential. It demonstrates how (1) opportunities for all partners to be equitably involved to the maximum degree possible throughout the research process can affect social change and (2) co‐produced research can become a catalyst that is dynamic and complex, achieving multi‐layered impact. [ABSTRACT FROM AUTHOR]

Background: Looked after children and care leavers (denoted as LAC) are often described as a 'hard to reach' group of young people, and their voices are rarely sought to inform academic research. Methods: This paper reports on experiences and reflections of a group of children and young people and academic researchers who developed a Patient and Public Involvement (PPI) group that was set up in the context of an ongoing health service intervention trial with LAC. Setting and participants: Eighteen qualitative semi‐structured interviews were conducted with seven LAC, the participation officer within a North East Children in Care Council and the four researchers involved in developing and facilitating the PPI group. PPI sessions (n = 9) each approximately 1 hour in length were conducted over an 18‐month period. Analysis: The qualitative interviews were transcribed verbatim. Thematic analysis was used to analyse the data, and direct quotes are used within the paper. Main outcomes: The LAC used the PPI group to produce a 5‐minute video to highlight why they think young people should be involved in research. Overall findings suggested that it was feasible to develop a research‐related PPI group with LAC. Findings from the research were used to co‐develop 'top tips' of working with vulnerable young people such as looked after children. Conclusion: This paper has shown that PPI with LAC can be done if a co‐production approach to research is taken. It also suggests that assumptions regarding the capabilities of young people as researchers need to be re‐evaluated. [ABSTRACT FROM AUTHOR]

Background and context: Breastfeeding peer support is valued by women, but UK trials have not demonstrated efficacy. The ABA feasibility trial offered proactive peer support underpinned by behaviour change theory and an assets‐based approach to women having their first baby, regardless of feeding intention. This paper explores women's and infant feeding helpers' (IFHs) views of the different components of the ABA intervention. Setting and participants: Trained IFHs offered 50 women an antenatal meeting to discuss infant feeding and identify community assets in two English sites—one with a paid peer support service and the other volunteer‐led. Postnatally, daily contact was offered for the first 2 weeks, followed by less frequent contact until 5 months. Methods: Interviews with 21 women and focus groups/interviews with 13 IFHs were analysed using thematic and framework methods. Results: Five themes are reported highlighting that women talked positively about the antenatal meeting, mapping their network of support, receiving proactive contact from their IFH, keeping in touch using text messaging and access to local groups. The face‐to‐face antenatal visit facilitated regular text‐based communication both in pregnancy and in the early weeks after birth. Volunteer IFHs were supportive of and enthusiastic about the intervention, whereas some of the paid IFHs disliked some intervention components and struggled with the distances to travel to participants. Conclusions: This proactive community assets‐based approach with a woman‐centred focus was acceptable to women and IFHs and is a promising intervention warranting further research as to its effect on infant feeding outcomes. [ABSTRACT FROM AUTHOR]

Background: Engaging with the public is a key element of health research; however, little work has examined experiences of public involvement in research dissemination. The aim of this paper was to assess the extent of public involvement, experiences of public advisers and resulting changes in the dissemination of the North West Coast Household Health Survey (HHS). Methods: Three writing groups allowed public advisers to contribute to the dissemination of the HHS. A public workshop was set up to aid the co‐production of the research evidence and discuss the experiences of public advisers involved with the survey in March 2018. A focus group with public advisers was conducted in August 2018 to understand their experiences of involvement. Data were analysed using thematic analysis and coded by two researchers. Writing groups are still on‐going. Results: Fourteen public advisers contributed via three face‐to‐face writing groups, by actively interpreting findings and helping in the write‐up of research articles and by presenting talks at the public workshop. At the workshop, seven public advisors contributed to setting priorities for data analysis from the HHS. Five public advisers took part in the focus group, which highlighted that whilst public advisers were generally satisfied with their involvement, they would like to be involved in more activities. Conclusions: Members of the public shaped the dissemination of evidence and provided guidance for future steps. Public advisers were mostly positive about their involvement in the dissemination of the HHS, but highlighted the need for more transparency and support from researchers. [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]

Introduction: The adoption of remote healthcare methods has been accelerated by the COVID‐19 pandemic, but evidence suggests that some patients need additional support to engage remotely, potentially increasing health disparities if needs are not met. This study of COVID‐19 remote home monitoring services across England explores experiences of and engagement with the service across different patient groups. Methods: This was a mixed‐methods study with survey and interview data collected from 28 services across England between February and June 2021. Surveys were conducted with staff and patients and carers receiving the service. Interviews with staff service leads, patients and carers were conducted in 17 sites. Quantitative data were analysed using univariate and multivariate methods, and qualitative data were analysed using thematic analysis. Findings: Survey responses were received from 292 staff and 1069 patients and carers. Twenty‐three staff service leads, 59 patients and 3 carers were interviewed. Many service leads reported that they had considered inclusivity when adapting the service for their local population; strategies included widening the eligibility criteria, prioritising vulnerable groups and creating referral pathways. However, disparities were reported across patient groups in their experiences and engagement. Older patients reported the service to be less helpful (p = 0.004), were more likely to report a problem (p < 0.001) and had more difficulty in understanding information (p = 0.005). Health status (p = 0.004), ethnicity (p < 0.001), gender (p < 0.001) and employment (p = 0.007) were associated with differential engagement with monitoring, and minority ethnic groups reported more difficulty understanding service information (p = 0.001). Qualitative data found illness severity to be an important factor in the support required, and patients' living situation and social network affected whether they found the service reassuring. Conclusion: Addressing health disparities must be a key focus in the design and delivery of remote care. Services should be tailored to match the needs of their local population, encourage access through collaboration and referral pathways with other services and monitor their inclusiveness. Involving patients and staff in service design can illuminate the diversity of patients' needs and experiences of care. Patient or Public Contribution: The study team met with service user and public members of the BRACE PPI group and patient representatives from RSET in a series of workshops. Workshops informed study design, data collection tools, data interpretation and dissemination activities. Study documents (such as consent forms, topic guides, surveys and information sheets) were reviewed by PPI members; patient surveys and interview guides were piloted, and members also commented on the manuscript. [ABSTRACT FROM AUTHOR]

Background Social network processes impact on the genesis and management of mental health problems. There is currently less understanding of the way people negotiate networked relationships in times of crisis compared to how they manage at other times. Objective This paper explores the patterns and nature of personal network involvement at times of crises and how these may differ from day-to-day networks of recovery and maintenance. Method Semi-structured interviews with 25 participants with a diagnosis of long-term mental health ( MH) problems drawn from recovery settings in the south of England. Interviews centred on personal network mapping of members and resources providing support. The mapping interviews explored the work of network members and changes in times of crisis. Interviews were recorded, transcribed and analysed using a framework analysis. Results Three key themes were identified: the fluidity of network relationality between crisis and recovery; isolation as a means of crises management; leaning towards peer support. Personal network input retreated at times of crisis often as result of 'ejection' from the network by participants who used self-isolation as a personal management strategy in an attempt to deal with crises. Peer support is considered useful during a crisis, whilst the role of services was viewed with some ambiguity. Conclusions Social networks membership, and type and depth of involvement, is subject to change between times of crisis and everyday support. This has implications for managing mental health in terms of engaging with network support differently in times of crises versus recovery and everyday living. [ABSTRACT FROM AUTHOR]

Objectives: To explore the experiences, acceptability and utility of a decision aid for family carers of people with dementia towards the end of life. Methods: We conducted semi‐structured interviews with a sample of family carers enroled into a 6‐month feasibility study in England, sampling to gain a range of experiences and views, based on relationship to person they cared for (e.g., spouse, adult child), age, gender, and self‐reported use of the decision aid during the feasibility study. Interviews were conducted in March 2021–July 2021 and analysed using reflexive thematic analysis. We used COREQ checklist to report our methods and results. Results: Family carers found the decision aid acceptable, describing it as comprehensive, accessible with relevant information and its presentation enabled good engagement. Experiences of the decision aid covered four main themes which demonstrated the perceived acceptability and utility: 1. A source of support and reassurance; 2. Empowering conversations and confidence; 3. Including the person living with dementia; and 4. Breaking down complexity. Conclusions: An aid focussing on decisions about dementia end of life care supported family carers break down complex and emotive decisions, not only with making decisions in the moment but also in future planning. Patient or Public Contribution: Our three Patient and Public Involvement (PPI) members (all former family carers) were crucial throughout the wider study. PPI supported development of the topic guides, supported trialling the topic guide and interview procedures and finally supported the development of themes as part of the analysis. [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]

Background and Aim: Long Covid is often stigmatised, particularly in people who are disadvantaged within society. This may prevent them from seeking help and could lead to widening health inequalities. This coproduced study with a Community Advisory Board (CAB) of people with Long Covid aimed to understand healthcare and wider barriers and stigma experienced by people with probable Long Covid. Methods: An active case finding approach was employed to find adults with probable, but not yet clinically diagnosed, Long Covid in two localities in London (Camden and Merton) and Derbyshire, England. Interviews explored the barriers to care and the stigma faced by participants and were analysed thematically. This study forms part of the STIMULATE‐ICP Collaboration. Findings: Twenty‐three interviews were completed. Participants reported limited awareness of what Long Covid is and the available pathways to management. There was considerable self‐doubt among participants, sometimes reinforced by interactions with healthcare professionals (HCPs). Participants questioned their deservedness in seeking healthcare support for their symptoms. Hesitancy to engage with healthcare services was motivated by fear of needing more investigation and concerns regarding judgement about the ability to carry out caregiving responsibilities. It was also motivated by the complexity of the clinical presentation and fear of all symptoms being attributed to poor mental health. Participants also reported trying to avoid overburdening the health system. These difficulties were compounded by experiences of stigma and discrimination. The emerging themes reaffirmed a framework of epistemic injustice in relation to Long Covid, where creating, interpreting and conveying knowledge has varied credibility based on the teller's identity characteristics and/or the level of their interpretive resources. Conclusion: We have codeveloped recommendations based on the findings. These include early signposting to services, dedicating protected time to listening to people with Long Covid, providing a holistic approach in care pathways, and working to mitigate stigma. Regardless of the diagnosis, people experiencing new symptoms must be encouraged to seek timely medical help. Clear public health messaging is needed among communities already disadvantaged by epistemic injustice to raise awareness of Long Covid, and to share stories that encourage seeking care and to illustrate the adverse effects of stigma. Patient or Public Contribution: This study was coproduced with a CAB made up of 23 members including HCPs, people with lived experience of Long Covid and other stakeholders. [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: Human T‐cell lymphotropic virus type 1 (HTLV‐1) is a chronic infection affecting 5–10 million people worldwide. Ten percent develop HTLV‐1‐associated diseases, and 3%–5% develop HTLV‐1‐associated myelopathy (HAM)/tropical spastic paraparesis. Low health‐related quality of life (HRQoL) is a significant concern for those with HTLV‐1, and little is known about how it impacts daily life or what patients need from healthcare services. To address this, we report on patient involvement workshops aimed at identifying research priorities for HTLV‐1 health service provision. Methods: Participants recruited through HTLV‐1 clinics in England attended six 90‐min virtual workshops over 10 months, and two 60‐min consolidation workshops. Content developed iteratively from topic focussed group discussions. All workshops were video‐recorded with consent, transcribed verbatim and thematically analysed. Using consensus voting rounds, participants individually ranked their top six and then collectively their top three research priorities from the themes inferred from the analysis. A final feedback session explored the experiences of participating in the workshops. Findings: Twenty‐seven people with HTLV‐1 engaged with the workshops with up to 22 participants attending each meeting. The majority were diagnosed with HAM (n = 22). The top three research priorities were identified as understanding disease progression, psychosocial wellbeing, and information and knowledge. Participants valued being asked to set research priorities that directly addressed their needs and enjoyed the workshops. They stressed the importance of patient advocates for promoting research that positively impacts everyday life. Conclusion: This is the first of this type of research engagement with people with HTLV‐1 in the United Kingdom. Participants identified several avenues of investigation that could lead to improvements in healthcare services and HRQoL. Participants believed the workshops signified the start of a conversation to progress person‐centred and meaningful research in HTLV‐1. Patient or Public Contribution: People living with HTLV‐1 were involved in the iterative design, conduct, analysis, writing and dissemination of this project through the patient involvement workshops. As a result of this engagement, a patient led advisory group has been set up to assist with the dissemination of the findings. [ABSTRACT FROM AUTHOR]

Introduction: While screening uptake is variable, many individuals feel they 'ought' to participate in screening programmes to aid the detection of conditions amenable to early treatment. Those not taking part in screening are often presented as either hindered by practical or social barriers or personally at fault. Why some people choose not to participate receives less consideration. Methods: We explored screening nonparticipation by examining the accounts of participants who chose not to participate in screening offered by a national research trial of atrial fibrillation (AF) screening in England (SAFER: Screening for Atrial Fibrillation with ECG to Reduce stroke). AF is a heart arrhythmia that increases in prevalence with age and increases the risk of stroke. Systematic screening for AF is not a nationally adopted programme within the United Kingdom; it provides a unique opportunity to explore screening nonparticipation outside of the norms and values attached to existing population‐based screening programmes. We interviewed people aged over 65 (n = 50) who declined an invitation from SAFER and analysed their accounts thematically. Results: Beyond practical reasons for nonparticipation, interviewees challenged the utility of identifying and managing AF earlier. Many questioned the benefits of screening at their age. The trial's presentation of the screening as research made it feel voluntary—something they could legitimately decline. Conclusion: Nonparticipants were not resistant to engaging in health‐promoting behaviours, uninformed about screening or unsupportive of its potential benefits. Instead, their consideration of the perceived necessity, legitimacy and utility of this screening shaped their decision not to take part. Patient or Public Contribution: The SAFER programme is guided by four patient and carer representatives. The representatives are embedded within the team (e.g., one is a co‐applicant, another sits on the programme steering committee) and by participating in regular meetings advise on all aspects of the design, management and delivery of the programme, including engaging with interpreting and disseminating the findings. For the qualitative workstream, we established a supplementary patient and public involvement group with whom we regularly consult about research design questions. [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: In older people living with frailty, polypharmacy can lead to preventable harm like adverse drug reactions and hospitalization. Deprescribing is a strategy to reduce problematic polypharmacy. All stakeholders should be actively involved in developing a person‐centred deprescribing process that involves shared decision‐making. Objective: To co‐design an intervention, supported by a logic model, to increase the engagement of older people living with frailty in the process of deprescribing. Design: Experience‐based co‐design is an approach to service improvement, which uses service users and providers to identify problems and design solutions. This was used to create a person‐centred intervention with the potential to improve the quality and outcomes of the deprescribing process. A 'trigger film' showing older people talking about their healthcare experiences was created and facilitated discussions about current problems in the deprescribing process. Problems were then prioritized and appropriate solutions were developed. The review located the solutions in the context of current processes and procedures. An ideal care pathway and a complex intervention to deliver better care were developed. Setting and Participants: Older people living with frailty, their informal carers and professionals living and/or working in West Yorkshire, England, UK. Deprescribing was considered in the context of primary care. Results: The current deprescribing process differed from an ideal pathway. A complex intervention containing seven elements was required to move towards the ideal pathway. Three of these elements were prototyped and four still need development. The complex intervention responded to priorities about (a) clarity for older people about what was happening at all stages in the deprescribing process and (b) the quality of one‐to‐one consultations. Conclusions: Priorities for improving the current deprescribing process were successfully identified. Solutions were developed and structured as a complex intervention. Further work is underway to (a) complete the prototyping of the intervention and (b) conduct feasibility testing. Patient or Public Contribution: Older people living with frailty (and their informal carers) have made a central contribution, as collaborators, to ensure that a complex intervention has the greatest possible potential to enhance the experience of deprescribing medicines. [ABSTRACT FROM AUTHOR]

Objective: Blood tests are commonly used in primary care as a tool to aid diagnosis, and to offer reassurance and validation for patients. If doctors and patients do not have a shared understanding of the reasons for testing and the meaning of results, these aims may not be fulfilled. Shared decision‐making is widely advocated; yet, most research focusses on treatment decisions rather than diagnostic decisions. The aim of this study was to explore communication and decision‐making around diagnostic blood tests in primary care. Methods: Qualitative interviews were undertaken with patients and clinicians in UK primary care. Patients were interviewed at the time of blood testing, with a follow‐up interview after they received test results. Interviews with clinicians who requested the tests provided paired data to compare clinicians' and patients' expectations, experiences and understandings of tests. Interviews were analysed thematically using inductive and deductive coding. Results: A total of 80 interviews with 28 patients and 19 doctors were completed. We identified a mismatch in expectations and understanding of tests, which led to downstream consequences including frustration, anxiety and uncertainty for patients. There was no evidence of shared decision‐making in consultations preceding the decision to test. Doctors adopted a paternalistic approach, believing that they were protecting patients from anxiety. Conclusion: Patients were not able to develop informed preferences and did not perceive that choice is possible in decisions about testing, because they did not have sufficient information and a shared understanding of tests. A lack of shared understanding at the point of decision‐making led to downstream consequences when test results did not fulfil patients' expectations. Although shared decision‐making is recommended as best practice, it does not reflect the reality of doctors' and patients' accounts of testing; a broader model of shared understanding seems to be more relevant to the complexity of primary care diagnosis. Patient or Public Contribution: A patient and public involvement group comprising five participants with lived experience of blood testing in primary care met regularly during the study. They contributed to the development of the research objectives, planning recruitment methods, reviewing patient information leaflets and topic guides and also contributed to discussion of emerging themes at an early stage in the analysis process. [ABSTRACT FROM AUTHOR]

Introduction: Remote home monitoring models were implemented during the COVID‐19 pandemic to shorten hospital length of stay, reduce unnecessary hospital admission, readmission and infection and appropriately escalate care. Within these models, patients are asked to take and record readings and escalate care if advised. There is limited evidence on how patients and carers experience these services. This study aimed to evaluate patient experiences of, and engagement with, remote home monitoring models for COVID‐19. Methods: A rapid mixed‐methods study was carried out in England (conducted from March to June 2021). We remotely conducted a cross‐sectional survey and semi‐structured interviews with patients and carers. Interview findings were summarized using rapid assessment procedures sheets and data were grouped into themes (using thematic analysis). Survey data were analysed using descriptive statistics. Results: We received 1069 surveys (18% response rate) and conducted interviews with patients (n = 59) or their carers (n = 3). 'Care' relied on support from staff members and family/friends. Patients and carers reported positive experiences and felt that the service and human contact reassured them and was easy to engage with. Yet, some patients and carers identified problems with engagement (e.g., hesitancy to self‐escalate care). Engagement was influenced by patient factors such as health and knowledge, support from family/friends and staff, availability and ease of use of informational and material resources (e.g., equipment) and service factors. Conclusion: Remote home monitoring models place responsibility on patients to self‐manage symptoms in partnership with staff; yet, many patients required support and preferred human contact (especially for identifying problems). Caring burden and experiences of those living alone and barriers to engagement should be considered when designing and implementing remote home monitoring services. Patient or Public Contribution: The study team met with service users and public members of the evaluation teams throughout the project in a series of workshops. Workshops informed study design, data collection tools and data interpretation and were conducted to also discuss study dissemination. Public patient involvement (PPI) members helped to pilot patient surveys and interview guides with the research team. Some members of the public also piloted the patient survey. Members of the PPI group were given the opportunity to comment on the manuscript, and the manuscript was amended accordingly. [ABSTRACT FROM AUTHOR]

Background: Many countries are introducing low‐dose computed tomography screening programmes for people at high risk of lung cancer. Effective communication strategies that convey risks and benefits, including unfamiliar concepts and outcome probabilities based on population risk, are critical to achieving informed choice and mitigating inequalities in uptake. Methods: This study investigated the acceptability of an aspect of NHS England's communication strategy in the form of a leaflet that was used to invite and inform eligible adults about the Targeted Lung Health Check (TLHC) programme. Acceptability was assessed in terms of how individuals engaged with, comprehended and responded to the leaflet. Semi‐structured, 'think aloud' interviews were conducted remotely with 40 UK screening‐naïve current and former smokers (aged 55–73). The verbatim transcripts were analysed thematically using a coding framework based on the Dual Process Theory of cognition. Results: The leaflet helped participants understand the principles and procedures of screening and fostered cautiously favourable intentions. Three themes captured the main results of the data analysis: (1) Response—participants experienced anxiety about screening results and further investigations, but the involvement of specialist healthcare professionals was reassuring; (2) Engagement—participants were rapidly drawn to information about lung cancer prevalence, and benefits of screening, but deliberated slowly about early diagnosis, risks of screening and less familiar symptoms of lung cancer; (3) Comprehension—participants understood the main principles of the TLHC programme, but some were confused by its rationale and eligibility criteria. Radiation risks, abnormal screening results and numerical probabilities of screening outcomes were hard to understand. Conclusion: The TLHC information leaflet appeared to be acceptable to the target population. There is scope to improve aspects of comprehension and engagement in ways that would support informed choice as a distributed process in lung cancer screening. Patient or Public Contribution: The insight and perspectives of patient representatives directly informed and improved the design and conduct of this study. [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]

Introduction: In 2020 England moved to an opt‐out deceased donation law. We aimed to investigate the views of a mixed stakeholder group comprising people with kidney disease, family members and healthcare practitioners towards the change in legislation. We investigated the expected impacts of the new legislation on deceased‐donor and living‐donor transplantation, and views on media campaigns regarding the law change. Methods: We undertook in‐depth qualitative interviews with people with kidney disease (n = 13), their family members (n = 4) and healthcare practitioners (n = 15). Purposive sampling was used to ensure diversity for patients and healthcare practitioners. Family members were recruited through snowball sampling and posters. Interviews were audio‐recorded and transcribed verbatim. Transcripts were analysed using thematic analysis. Results: Three themes with six subthemes were identified: (i) Expectations of impact (Hopeful patients; Cautious healthcare professionals), (ii) Living‐donor transplantation (Divergent views; Unchanged clinical recommendations), (iii) Media campaigns (Single message; Highlighting recipient benefits). Patients expected the law change would result in more deceased‐donor transplant opportunities. Conclusions: Clinicians should ensure patients and families are aware of the current evidence regarding the impact of opt‐out consent: expectations of an increased likelihood of receiving a deceased‐donor transplant are not currently supported by the evidence. This may help to prevent a decline in living‐donor transplantation seen in other countries with similar legislation. Media campaigns should include a focus on the impact of organ receipt. Patient or Public Contribution: Two patient representatives from the Kidney Disease Health Integration Team, Primrose Granville and Soumeya Bouacida, contributed to the content and design of the study documents. [ABSTRACT FROM AUTHOR]

Background: Parents of disabled children report poorer inpatient experiences when they stay in hospital, and some staff report finding communicating with disabled children challenging. This study tested the feasibility of implementing a training package for staff on paediatric wards to improve communication with disabled children, especially those with communication difficulties, and their families. The package was developed with parent carers and clinicians, and comprises a manual, a video of parent carers talking about real experiences, discussion points and local resources. The 50‐minutes training is intended for in‐house delivery by local facilitators. Methods: Thirteen training sessions were delivered in paediatric wards across four hospitals in England, totalling 123 staff who took part. Participants completed questionnaires before (n = 109) and after (n = 36) training, and a sample of champions (senior clinicians) and facilitators were interviewed at the end of the study. Results: Facilitators found the training easy to deliver, and participants felt they took away important messages to improve their practice. After the training, further changes were reported at an organizational level, including offering further training and reviewing practices. Conclusions: This study provides supporting evidence for the implementation of a low‐cost, minimal‐resource training package to support staff communication with children and their families in hospitals. It provides promising indication of impact on behavioural change at the individual and organizational level. Patient and public contribution: Parent carers identified the need and helped to develop the training, including featuring in the training video. They were also consulted throughout the study on research design, delivery and reporting. [ABSTRACT FROM AUTHOR]

Background: There is limited evidence for the impact of involving patients and the public (PPI) in health research. Descriptions of the PPI process are seldom included in publications, particularly data analysis, yet an understanding of processes and impacts of PPI is essential if its contribution to research is to be evaluated. Objective: To describe the 'how' of PPI in qualitative data analysis and critically reflect on potential impact. Methods: We focus on the development and critical reflection of our step‐by‐step approach to collaborative qualitative data analysis (through a series of analysis workshops) in a specific care home study, and our long‐term engagement model with patients and the public (termed PPI partners). Results: An open access PPI group, with multiple events over time, sustained broad interest in care home research. Recordings of interview clips, role‐play of interview excerpts and written theme summaries were used in workshops to facilitate PPI partner engagement with data analysis in a specific study. PPI resulted in changes to data interpretation and was perceived to make the research process accessible. We reflect on the challenge of judging the benefits of PPI and presenting PPI in research publications for critical commentary. Conclusions: Patient and public involvement partners who are actively engaged with data analysis can positively influence research studies. However, guidance for researchers is needed on approaches to PPI, including appropriate levels and methods for evaluation. Without more systematic approaches, we argue that it is impossible to know whether PPI represents good use of resources and is generating a real impact. [ABSTRACT FROM AUTHOR]

Background: Our study aimed to evaluate to what extent Zero2 Expo's 'Birthing a Better Future', a co‐created multimedia exhibition, was effective in raising awareness on the importance of the first 1001 days of life and explore what refinements would help to optimize the impact of future exhibitions. Methods: We conducted a mixed‐methods evaluation of the exhibition delivered in the John Radcliffe Hospital, Oxford. Through convenience sampling, 14 participants were selected to participate in 12 structured interviews and 19 participants completed a questionnaire. Interviews were thematically analysed alongside quantitative analysis of questionnaire responses through Likert scales. Results: The majority (78.6%, n = 11/14) of participants who completed the questionnaire either agreed or strongly agreed that the exhibition raised their awareness about the first 1001 days of life. This was supported by the analysis of interviews. The use of art was found to provoke an emotional engagement from participants. Participants felt that the length of the written pieces and location of the exhibition were important factors for designers to consider in future exhibitions. Conclusion: This study demonstrated that multimedia exhibitions, combining science with art, may be an effective way to raise awareness of public health messages. Engaging with key stakeholders will be an essential step in order to improve future public health exhibitions. Public Contribution: When designing the study, the public reviewed the study tools, which were refined based on their feedback. At every phase of the study, members of the public who are artists co‐created the exhibition content. [ABSTRACT FROM AUTHOR]

Background: Hypertension is mainly managed in primary care. Shared decision making is widely recommended as an approach to treatment decision making. However, no studies have investigated; in detail, what happens during primary care consultations for hypertension. Aim: To understand patients' and clinicians' experience of shared decision making for hypertension in primary care, in order to propose how it might be better supported. Design: Longitudinal qualitative study. Setting: Five general practices in south‐west England. Method: Interviews with a purposive sample of patients with hypertension, and with the health‐care practitioners they consulted, along with observations of clinical consultations, for up to 6 appointments. Interviews and consultations were audio‐recorded and observational field notes taken. Data were analysed thematically. Results: Forty‐six interviews and 18 consultations were observed, with 11 patients and nine health‐care practitioners (five GPs, one pharmacist and three nurses). Little shared decision making was described by participants or observed. Often patients' understanding of their hypertension was limited, and they were not aware there were treatment choices. Consultations provided few opportunities for patients and clinicians to reach a shared understanding of their treatment choices. Opportunities for patients to engage in choices were limited by structured consultations and the distribution of decisions across consultations. Conclusion: For shared decision making to be better supported, consultations need to provide opportunities for patients to learn about their condition, to understand that there are treatment choices, and to discuss these choices with clinicians. Patient or Public Contribution: A patient group contributed to the design of this study. [ABSTRACT FROM AUTHOR]

Background: Patient and staff experiences provide important insights into care quality, but health systems have difficulty using these data to improve care. Little attention has been paid to understanding how patient experience feedback can act as a prompt to reflection in practice in the clinical setting. Objective: We aimed to identify the ways in which different types of patient experience feedback act as a trigger or prompt for engagement in reflection in clinical practice in acute hospital settings and identify important considerations for enhancing the value of patient experience data for reflective learning. Methods: We conducted an ethnographic study in eight acute care units in three NHS hospital trusts in England, including 140 hours of observations and 45 semi‐structured interviews with nursing, medical and managerial staff working in acute medical units and intensive care units. The data were analysed thematically. Findings: We distinguished between formal patient experience data sources: data purposively collected and collated to capture the patient experience of care, generally at organizational level, including surveys, complaints and comments; and informal sources of feedback on the patient experience recognized by staff alongside the formal data. We also identified patient narratives as an 'in between' source of data. The impact of different types of patient feedback in triggering reflection primarily depended on the extent to which the feedback was experienced as personally relevant, meaningful and emotionally salient. Discussion: Patient experience feedback is multi‐faceted, but our study suggests that all types of feedback could be harnessed more effectively to prompt reflection. [ABSTRACT FROM AUTHOR]

Background: It has been suggested that the mental health impacts of living with long‐term conditions are greater in young adulthood compared to older adulthood, due to greater disruption to identity and routine life events. Objectives: To explore the impact of living with long‐term conditions in young adulthood on mental health and identity, and what helps living well with these conditions. Methods: Fifteen in‐depth interviews with young adults with various conditions were conducted and analysed thematically. Results: Themes related to the impacts on mental health and identity include the following: negative mood and depression; anxiety and fear for the future; and identity as 'ill'/abnormal compared to former self and 'normal' others. Themes related to suggestions for addressing negative impacts include the following: promotion of positive thinking; support reaching acceptance with altered identity and limitations (through stages of denial, anger, depression, then acceptance); and more professional mental health support. Discussion: In order to promote mental health and a positive sense of self/identity, young adults with long‐term conditions should be offered advice and support on positive thinking; the long and difficult process of reconstructing identity; and reaching acceptance. This is particularly important for young adults for whom the identity reconstruction process is more complex and psychologically damaging than for older adults, as this life stage is associated with health/vitality and illness represents a shift from a perceived normal trajectory to one that appears and feels abnormal. [ABSTRACT FROM AUTHOR]

Background: High profile failures of care in the NHS have raised concerns about regulatory systems for health‐care professionals and organizations. In response, the Care Quality Commission (CQC), the regulator of health and social care in England overhauled its regulatory regime. It moved to inspections which made much greater use of expert knowledge, data and views from a range of stakeholders, including service users. Objective: We explore the role of service users and citizens in health and social care regulation, including how CQC involved people in inspecting and rating health and social care providers. Design: We analyse CQC reports and documents, and 61 interviews with CQC staff and representatives of groups of service users and citizens and voluntary sector organizations to explore the place of service user voice in regulatory processes. Results: Care Quality Commission invited comments and facilitated the sharing of existing service user experiences and engaged with representatives of groups of service users and voluntary sector organizations. CQC involved service users in their inspections as "experts by experience." Information from service users informed both the inspection regime and individual inspections, but CQC was less focused on giving feedback to service users who contributed to these activities. Discussion and conclusions: Service users can make an important contribution to regulation by sharing their experiences and having their voices heard, but their involvement was somewhat transactional, and largely on terms set by CQC. There may be scope for CQC to build more enduring relationships with service user groups and to engage them more effectively in the regulatory regime. [ABSTRACT FROM AUTHOR]

Background: In the United States, lung cancer screening aims to detect cancer early in nonsymptomatic current and former smokers. A lung screening pilot service in an area of high lung cancer incidence in the United Kingdom has been designed based on United States trial evidence. However, our understanding of acceptability and reasons for lung screening uptake or decline in a United Kingdom nontrial context are currently limited. Objective: To explore with ever smokers the acceptability of targeted lung screening and uptake decision‐making intentions. Design: Qualitative study using semistructured focus groups and inductive thematic analysis to explore acceptability and uptake decision‐making intentions with people of similar characteristics to lung screening eligible individuals. Setting and participants: Thirty‐three participants (22 ex‐smokers; 11 smokers) men and women, smokers and ex‐smokers, aged 50‐80 were recruited purposively from community and health settings in Manchester, England. Results: Lung screening was widely acceptable to participants. It was seen as offering reassurance about lung health or opportunity for early detection and treatment. Participant's desire to know about their lung health via screening was impacted by perceived benefits; emotions such as worry about a diagnosis and screening tests; practicalities such as accessibility; and smoking‐related issues including perceptions of individual risk and smoking stigma. Discussion: Decision making was multifaceted with indications that current smokers faced higher participation barriers than ex‐smokers. Reducing participation barriers through careful service design and provision of decision support information will be important in lung screening programmes to support informed consent and equitable uptake. [ABSTRACT FROM AUTHOR]

Background: Person‐centredness is important in delivering care for long‐term conditions. New models of care aim to co‐ordinate care through integration of health and social care which require new ways of working, often remotely from the patient. Objective: To describe how person‐centred care is enacted within multidisciplinary groups (MDGs) created as part of a new service, integrating health and social care for older people. Methods: We followed the implementation of eight neighbourhood MDGs, observing and interviewing staff from three MDGs at different phases of programme implementation using semi‐structured topic guides. Results: Thirty‐four MDG meetings were observed and 32 staff interviewed. Three core themes were identified which impacted on enactment of person‐centred care: the structural context of MDGs enabling person‐centred care; interaction of staff and knowledge sharing during the MDG meetings; and direct staff involvement of the person outside the MDG discussion. Conclusions: This study provides new insights into attempts to enact person‐centred care within a new model of service delivery. Teams did what they could to enact person‐centred care in the absence of the "real" patient within MDG meetings. They were successful in delivering and co‐ordinating some aspects of care (eg prompting medication reviews, referring to social worker, health improvement and arranging further multidisciplinary team meetings for complex cases). This "absence of patients" and time pressures within the MDGs led to reliance on the "virtual" record, enhanced by additional "soft" knowledge provided by staff, rather than ensuring the patient's voice was included. [ABSTRACT FROM AUTHOR]

Background: In 2010, Greater Manchester (GM) and London centralized acute stroke care services into a reduced number of hyperacute stroke units, with local stroke units providing on‐going care nearer patients' homes. Objective: To explore the impact of centralized acute stroke care pathways on the experiences of patients. Design: Qualitative interview study. Thematic analysis was undertaken, using deductive and inductive approaches. Final data analysis explored themes related to five chronological phases of the centralized stroke care pathway. Setting and participants: Recruitment from 3 hospitals in GM (15 stroke patients/8 family members) and 4 in London (21 stroke patients/9 family members). Results: Participants were impressed with emergency services and initial reception at hospital: disquiet about travelling further than a local hospital was allayed by clear explanations. Participants knew who was treating them and were involved in decisions. Difficulties for families visiting hospitals a distance from home were raised. Repatriation to local hospitals was not always timely, but no detrimental effects were reported. Discharge to the community was viewed less positively. Discussion and conclusions: Patients on the centralized acute stroke care pathways reported many positive aspects of care: the centralization of care pathways can offer patients a good experience. Disadvantages of travelling further were perceived to be outweighed by the opportunity to receive the best quality care. This study highlights the necessity for all staff on a centralized care pathway to provide clear and accessible information to patients, in order to maximize their experience of care. [ABSTRACT FROM AUTHOR]

Background: Reciprocal relationships between researchers and patient and public involvement (PPI) contributors can enable successful PPI in research. However, research and anecdotal evidence suggest that researchers do not commonly provide feedback to PPI contributors thus preventing them from knowing whether, how or where their contributions were useful to researchers and research overall. Aims: The aim of this study was to explore the variation, types, importance of, and satisfaction with feedback given by researchers to PPI contributors in six PPI groups in England, and identify the barriers to the process of feedback. Methods: An explanatory mixed methods sequential study design with a questionnaire survey followed by semi‐structured interviews with researchers and PPI contributors in six PPI groups. PPI contributors were involved in all stages of the research process. Results: Researchers do not routinely give feedback to PPI contributors. Feedback was found to have different meanings: an acknowledgement, impact and study success and progress. PPI contributors who receive feedback are motivated for further involvement; it supports their learning and development and prompts researchers to reflect on PPI impact. The importance of the role of a PPI lead or coordinator to facilitate the process of providing feedback was also highlighted. Conclusion: This study found no generic way to give feedback indicating that mutual feedback expectations should be discussed at the outset. PPI feedback needs to become integral to the research process with appropriate time and resources allocated. PPI feedback can be seen as a key indicator of mature, embedded PPI in research. [ABSTRACT FROM AUTHOR]

Abstract: Background: Colorectal cancer (CRC) screening programmes using a guaiac faecal occult blood test (gFOBt) reduce CRC mortality. Interval cancers are diagnosed between screening rounds: reassurance from a negative gFOBt has the potential to influence the pathway to diagnosis of an interval colorectal cancer. Methods: Twenty‐six semi‐structured face‐to‐face interviews were carried out in Scotland and England, with individuals diagnosed with an interval colorectal cancer following a negative gFOBt result. Results: Participants reported they were reassured by a negative gFOBt, interpreting their result as an “all clear”. Therefore, most did not suspect cancer as a possible cause of symptoms and many did not recall their screening result during symptom appraisal. Among those who did consider cancer, and did think about their screening test result, reassurance from a negative gFOBt led some to “downplay” the seriousness of their symptoms with some interviewees explicitly stating that their negative test result contributed to a delayed decision to seek help. Conclusion: Screening participants need to be informed of the limitations of screening and the ongoing risk of developing colorectal cancer even when in receipt of a negative result: the importance of minimizing delay in seeking medical advice for colorectal symptoms should be emphasized. [ABSTRACT FROM AUTHOR]

Abstract: Background: UK Hospital Trusts are charged with increasing patients’ research awareness and willingness to take part in research. This includes implementing strategies to encourage patient‐initiated enquiries about participation. Objectives: To evaluate the impact of a research statement inserted in outpatient letters in one clinical service, and to derive suggestions on potential steps towards increasing patient‐initiated recruitment. Setting: A medical outpatient clinic of a research‐active hospital trust, serving an inner‐city multi‐ethnic population across two boroughs. Methods: Pre‐intervention and post‐intervention questionnaires were administered face‐to‐face to new patients. Questionnaires included closed questions and one open comments section. Data were analysed for frequencies, with thematic coding of open‐ended responses. Results: The response rates were 87% for the pre‐intervention survey and 92% for the post‐intervention survey. In the post‐intervention survey, 85% of patients did not notice the research statement in the letter. More than half found the statement “a little unclear,” whilst one‐third considered it “clear.” Three‐quarters of respondents perceived the statement to be “a little helpful.” Only one person enquired about participating in clinical research having read the statement in the outpatient letter. Conclusion: The analysis suggests that simple, single‐solution approaches such as including research statements in outpatient letters are unlikely to be sufficient to significantly facilitate patient‐initiated recruitment. Recruitment efforts need to take into consideration the diversity of patient constituencies including the reasons they seek health care, and how patients can meaningfully access information (research literacy). [ABSTRACT FROM AUTHOR]

Background Older people are sometimes challenged in maintaining a healthy diet but, because of age and disadvantage, are also more vulnerable to the adverse health consequences of poor nutrition. It has been claimed that older adults have low levels of health literacy regarding food and struggle to discern which foods are healthy from the vast range available in developed counties. However, nutrition and eating behaviour are modifiable risk factors for health in old age and health benefits can accrue from promoting healthy eating later in life. In order to achieve these health benefits, it is necessary to understand more about the capabilities and vulnerabilities of older people in terms of acquiring and maintaining a healthy diet. Objective To understand the potential for issues around food vulnerability to arise in that group and to characterize that vulnerability, if present. Design Narrative interviews were conducted to collect the data. An interpretative thematic approach to analysis was utilized. Participants Twenty older, bereaved men from two communities in the North of England. Findings Five overarching themes were identified: financial security, social networks, cooking skills, food and routine and single servings. Discussion Our findings suggest that some older men experience cumulative benefit from resources at their disposal, which contributes towards their capabilities to avoid food vulnerability. [ABSTRACT FROM AUTHOR]

Background Recruitment to clinical research studies can prove complex. This is particularly true of mental health research, given factors such as confidentiality, capacity and consent, or when attempting to recruit family members as opposed to service users themselves. Aim This study investigated the challenges experienced and strategies employed in the recruitment of siblings of people with first episode psychosis using Early Intervention in Psychosis Services ( EIPS) in England. Methods As part of a randomized controlled trial ( RCT) of an e-health intervention for siblings, we conducted a process evaluation study whereby semistructured interview was undertaken with clinical and research staff involved in recruitment of siblings. Data were analysed thematically. Results Twelve participants from six EIPS were interviewed. Data analysis revealed seven key themes: (i) limited comprehensive family data available; (ii) data governance and consent issues; (iii) organizational factors; (iv) convoluted recruitment methods; (v) concerns about service users' opinions; (vi) fluidity in siblings' needs and expectations; and (vii) strategies to enhance recruitment. Conclusions Recruitment challenges identified in this study concerned administrative, organizational, process and attitudinal issues. These are similar to other studies recruiting mental health service users as well as family members. Failure to recruit to target implies that studies are underpowered to detect potential statistically or clinically meaningful changes. Future studies should establish how best to enhance family inclusiveness in clinical practice and research. [ABSTRACT FROM AUTHOR]

Background Newspaper stories can impact behaviours, particularly in relation to research participation. It is therefore important to understand the narratives presented and ways in which these are received. Some work to date assumes journalism transmits existing medical knowledge to a passive audience. This study aimed to explore how newspaper articles present stories about medical research and how people interpret and use them. Design Qualitative research methods were employed to analyse two data sets: newspaper articles relating to 'rheumatoid arthritis' and 'research' from UK local and national news sources; and existing transcripts of interviews with patients with rheumatoid arthritis and their carers. Results Newspapers present a positive account of medical research, through a simple narrative with three essential components: an 'innovation' offers 'hope' in the context of 'burden'. Patients frequently feature as passive subjects without attributed opinions. Few articles include patients' experiences of research involvement. Patients with rheumatoid arthritis and their carers read articles about medical research critically, often with cynicism and drawing on other sources for interpretation. Conclusions An understanding of the simple, positive narrative of medical research found in newspaper articles may enable researchers to gain mass media exposure for their work and challenge this typical style of reporting. The critical and cynical ways patients and carers read stories about medical research suggest that concerns about newspaper articles misinforming the public may be overstated, but any effect on research engagement is unknown. Newspaper articles rarely present patients' views or their experiences of research, and this can be conceptualized as 'depersonalization bias'. [ABSTRACT FROM AUTHOR]

The article presents a study which aims to explore patients' perspectives of the quality and safety of the care received during their admission on a clinically inappropriate hospital ward. The researchers detail the study design using qualitative study of a semi-structured interviews in a teaching hospital in England. The study suggests that hospital staff should take action to address the gaps in quality and safety of care identified by patients.

Background: Involving service users in the systematic review process is seen as increasingly important. As systematic reviews often include studies from diverse settings and covering a time span of several decades, involving service users in consideration of applicability to specific populations or settings might make reviews more useful to practitioners and policymakers. Objectives: To test and contextualize the findings of a systematic review of qualitative studies looking at patient and carer experiences of diagnosis and treatment of dementia. Methods: Results from the systematic review were discussed in focus groups and semi‐structured interviews with patient, public and professional participants in the South East of England. Analysis was guided by coding frameworks developed from the results of the systematic review. Participants: We recruited 27 participants, including three people with dementia, 12 carers, six service providers and five older people without dementia. Results: Findings from the focus groups and interviews were consistent with those from the systematic review and suggest that our review findings were applicable to the local setting. We found some evidence that access to information and diagnostic services had improved but, as in the systematic review, post‐diagnosis support was still often experienced as inadequate. Conclusions: Focus groups and interviews with service users and their representatives can provide useful contextual information. However, such strategies can require considerable investment of the part of the researcher in terms of time and resources, and more work is needed to refine strategies and establish the benefits for patients and the organization of services. [ABSTRACT FROM AUTHOR]

The article presents a study which aims to explore the patients' and health professionals' experiences and perceptions on the management strategies for insomia in primary care. The researchers detail the study design, participants and setting, data collection procedure and outcomes. The study provides a better understanding on the approaches and difficulties in the therapeutic options and management of insomnia in primary care setting.

The article presents a study which aims to explore the acceptability of antenatal enquiry for domestic abuse from the perspective of women using maternity services. The researchers detail the multimethod approach in data collection procedure and outcomes. It implies that women patients support and have positive views of antenatal enquiry for domestic abuse in healthcare settings.

Introduction: The term ‘post‐polio syndrome’ (PPS) is used to describe new and late manifestations of poliomyelitis that occur later in life. Research in this area has focused upon health status rather than its effect on quality of life. Aim: To gain an in‐depth understanding of the meaning of quality of life for polio survivors and to determine the type of strategies that are used by people with PPS and the support that they consider as important to facilitate participation in everyday life activities that have an impact on their quality of life. Method: Six focus groups were conducted with 51 participants from two regions in England. Data were audio‐taped and analysed using thematic analysis. Results: Our research found that polio survivors used terms used to describe quality of life which could be associated with that of happiness. Our research has identified resolvable factors that influence quality of life namely inaccessible environments, attitudes of health‐care professionals and societal attitudes. Polio survivors have tried alternative therapies, chiefly acupuncture and massage, and found them to be effective in enhancing their quality of life. Conclusion: It is suggested that health‐care professionals should consider factors which influence happiness and implement a person‐centred approach with the views of the polio survivor being listened to. The three factors that influenced quality of life could be resolved by health‐care professionals and by society. With regard to strategies used, we suggest that polio survivors should have access to the treatments that they perceive as important, although further research is required to design optimal interventions for this client group. [ABSTRACT FROM AUTHOR]

Background: Uptake of colorectal cancer screening programmes needs to be improved or at least maintained in order to achieve projected reductions in mortality and morbidity. Understanding the origins of non‐participation in screening is therefore important. Objective: To explore the beliefs and experiences of individuals who had not responded either to their screening invitation or reminder. Design: A qualitative study using in‐depth interviews with non‐participants from England's population‐based colorectal cancer screening programme. Data collection and analysis were carried out using a grounded theory approach, with an emphasis on the constant comparison method, and continued until saturation (27 interviews). Findings: The interviews provided an in‐depth understanding of a range of reasons and circumstances surrounding non‐participation in screening, including contextual and environmental influences as well as factors specific to the screening test. Non‐participation in screening was not necessarily associated with negative attitudes towards screening or a decision to not return a kit. Reasons for non‐participation in screening included not feeling that participation is personally necessary, avoiding or delaying decision making, and having some degree of intention to take part but failing to do so because of practicalities, conflicting priorities or external circumstances. Beliefs, awareness and intention change over time. Discussion and conclusions: A range of approaches may be required to improve screening uptake. Some non‐participants may already have a degree of intention to take part in screening in the future, and this group may be more responsive to interventions based on professional endorsement, repeat invitations, reminders and aids to making the test more practical. [ABSTRACT FROM AUTHOR]

Background In recent years, patient-focused interventions have been introduced aimed at increasing patient involvement in safety-related behaviours. However, patients' attitudes towards these interventions and comfort in participating in the recommended behaviours remain largely unexplored. Objective To evaluate patients' attitudes towards a video and leaflet aimed at encouraging patient involvement in safety-related behaviours. Design Two exploratory studies employing a within-subjects mixed-methods design. Setting Six hospital wards on an inner-city London teaching hospital. Participants Medical and surgical inpatients: 80 patients in study 1 (mean age 55; 69% men) and 80 patients in study 2 (mean age 52; 60% men). Intervention Patients watched the PINK patient safety video (study 1) or read the National Patient Safety Agency's 'Please Ask' about staying in hospital leaflet (study 2). Main outcome measures Perceived comfort in participating in safety-related behaviours; attitudes towards the video or leaflet. Results Both video and leaflet increased patients' perceived comfort in engaging in some (but not all) safety-related behaviours ( P < 0.05). In both studies, the majority of patients questioned whether the intervention could help to reduce medical errors in health care. Suggestions on how the video/leaflet could be improved mainly related to content and layout. Conclusion Video and leaflet could be effective at encouraging patient involvement in some safety-related behaviours. Further in-depth research on patients' attitudes towards different educational materials is required to help inform future policies and interventions in this very important but under-researched area. [ABSTRACT FROM AUTHOR]