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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]

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: 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: Obesity rates are higher among people of lower socioeconomic status. While numerous health behaviour interventions targeting obesity exist, they are more successful at engaging higher socioeconomic status populations, leaving those in less affluent circumstances with poorer outcomes. This highlights a need for more tailored interventions. The aim of this study was to enhance an existing weight loss course for adults living in low socioeconomic communities. Methods: The Behaviour Change Wheel approach was followed to design an add‐on intervention to an existing local authority‐run weight loss group, informed by mixed‐methods research and stakeholder engagement. Results: The COM‐B analysis of qualitative data revealed that changes were required to psychological capability, physical and social opportunity and reflective motivation to enable dietary goal‐setting behaviours. The resulting SMART‐C booklet included 6 weeks of dietary goal setting, with weekly behavioural contract and review. Conclusion: This paper details the development of the theory‐ and evidence‐informed SMART‐C intervention. This is the first report of the Behaviour Change Wheel being used to design an add‐on tool to enhance existing weight loss services. The process benefitted from a further checking stage with stakeholders. [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]

This paper explores the methodological aspects of a user‐led study investigating mental health service user experiences of targeted violence and abuse (often called 'hate crime'). 'Keeping Control' was a 16‐month qualitative study, undertaken in the context of adult safeguarding reforms in England. By collecting data on service user concepts and experiences, the research sought to address a gap in research and practice knowledge relating to targeted violence, abuse and hostility against people with mental health problems. In this paper, we discuss the significance of the design and methodology used for this study, with a particular focus on the interviews with service users. The research was both user‐led and carried out in collaboration with practitioners and academics, a form of research co‐production. Our aim is to inform researchers, practitioners and policymakers about the value of user leadership in co‐productive research with practitioners, particularly for a highly sensitive and potentially distressing topic. [ABSTRACT FROM AUTHOR]

Background: A new diagnosis of complex post‐traumatic stress disorder, CPTSD, has been agreed by the World Health Organization, WHO, and evidence is needed for what psychological treatment might be effective, particularly from those with experience of the disorder. We used a novel participatory approach to explore patient views and simultaneously studied the impact on the patient researchers of the research process itself. In this paper, we report on the latter section of the study how the involvement in research of patients with CPTSD affected their mental health. Symptoms of CPTSD may include emotional dysregulation, feelings of self‐worthlessness and difficulties in relationships. Objective: The aim of this study section was to explore whether patients' mental health could be promoted through empowering them to participate in research on CPTSD. Design: The study had a qualitative, participatory design. The clinician who led the research (first author) held group meetings with patient researchers to explore the impact of the research process. The clinician also kept notes on the process in a reflective log. Setting and participants: Six patient researchers participated in research with other patients with lived experience of CPTSD in an NHS outpatient unit in a London hospital. Intervention studied: The research process itself was analysed in group meetings with researchers which the clinician recorded and transcribed. Findings: Participation in research may promote increased self‐confidence and social inclusion for those with CPTSD. Conclusion: Involvement in research may be seen as an empowering intervention because patients felt it contributed to recovery. [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: Meals on Wheels (MoWs) could help adults with care and support needs continue living independently. However, many people are not aware that the service still exists in England, or that it could provide benefits beyond nutrition. Objective: Working with an existing advisory group of six people with lived experience of MoWs (an adult who uses MoWs and people who have referred a family member to MoWs), this work aimed to co‐produce knowledge translation resources (two infographics and a film) to raise awareness of MoWs and their benefits. Methods: Four participatory online workshops were held in May–July 2023, to establish perceived high‐priority themes from recent qualitative research that should be included in the resources, and preferences about message content, language, design, and how the resources should be disseminated. Findings: The most important perceived MoWs benefits that the group agreed should be included in the resources were: the importance of a nutritious meal that requires no preparation; the service's reliability/consistency; the importance of interactions in reducing social isolation, and; the ease to commence the service. The group highlighted the need for language to be nontechnical and invitational, and for images to relate to respective messages, and be inclusive of anyone who could benefit from MoWs. Several routes for dissemination were proposed, highlighting the need to disseminate to the NHS, social care organisations and community groups. Conclusion: These co‐produced resources could enhance adult social care delivery in England, as raising awareness of MoWs and their benefits could increase referral rates, so that more adults with care and support needs can benefit from the service. Patient or Public Contribution: An advisory group of people with lived experience of MoWs (users of the service and family referrers) participated in the workshops, extensively discussed the findings of earlier research, co‐produced the knowledge translation resources, and advised on the implications and future dissemination steps. The group also provided informal feedback on a draft of this manuscript. [ABSTRACT FROM AUTHOR]

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

Introduction: In the United Kingdom, fractures of the cervical dens process in older and/or frail patients are usually managed nonsurgically in a hard collar. However, hard collars can lead to complications and this management approach is now being questioned, with growing interest in maximising patients' short‐term quality‐of‐life. It is vital that patients' perspectives are considered; yet, there is a dearth of literature examining the aspect. To help inform wider decision‐making about use of collar/no collar management of dens fractures in older/frail people, we explored older/frail people's experience of the two management approaches and how they affected their perceived quality‐of‐life. Methods: We interviewed older and/or frail adults with a recent dens fracture (aged ≥65 years or with a clinical frailty score of ≥5) or their caregiver. Participants were recruited from both arms of a clinical trial comparing management using a hard collar for 12 weeks (SM) with early removal of the collar (ERC) and were interviewed following randomisation and again, 12–16 weeks later. Data were analysed using a framework approach. Results: Both participant groups (SM/ERC) reported substantial, negative quality‐of‐life (QoL) experiences, with the fall itself and lack of access to care services and information being frequent major contributory factors. Many negative experiences cut across both participant groups, including pain, fatigue, diminished autonomy and reduced involvement in personally meaningful activities. However, we identified some subtle, yet discernible, ways in which using SM/ERC reinforced or alleviated (negative) QoL impacts, with the perceived benefits/burdens to using SM/ERC varying between different individuals. Conclusion: Study findings can be used to support informed decision‐making about SM/ERC management of dens fractures in older/frail patients. Patient or Public Contribution: Public and patient involvement contributors were involved in the study design, development of interview topic guides and interpretation of study findings. [ABSTRACT FROM AUTHOR]

Introduction: Problem‐solving skills (PSS) help to provide a systematic approach to dealing with and managing complex problems. The overall aim of this study was to assess the acceptability and feasibility of developing and adapting a prison‐based PSS workbook for adults within a medium‐ and low‐secure hospital. Method: We used the Medical Research Council framework in our participatory mixed methods study incorporating an adapted survey (to identify what types of problems people experience in secure hospitals), a series of three interactive workshops (to co‐produce two case study examples for a workbook) and we gathered feedback from patients and hospital staff on the acceptability and feasibility of the workbook. Data from the survey were used to inform the case study examples, and the feedback from patients and hospital staff was descriptively summarised and the results consolidated. Results: In total, 82 (51%) patients took part in the survey; 22 patients and 49 hospital staff provided feedback on the workbook. The survey results indicated that patients regularly experience problems while in the hospital. Patients reported problems relating to restrictions of freedom and boredom. The workshops produced two case studies for the workbooks, with mainly positive patient and staff feedback. More work is required to improve the visual representation of the characters in the case studies, the amount and content of the language and the mechanism of the intervention delivery. Conclusion: The adaptation process proved acceptable and feasible to both patients and staff. The co‐production methodology for the workbook and feedback from patients and staff was an effective way of iteratively refining the materials to ensure that they were both meaningful and acceptable to staff and patients. Subsequent work is required to develop the workbook and evaluate the feasibility of the intervention delivery, recruitment rates, uptake and adherence to the PSS using a randomised controlled trial. Patient or Public Contribution: At each stage of the project consultation with patients and/or hospital staff was involved. [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: 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: Care home staff working during the COVID‐19 pandemic experienced higher levels of stress and increased workloads. People from diverse ethnic backgrounds were disproportionately affected by the COVID‐19 pandemic. This study explored the identity experiences of care home staff from diverse ethnic backgrounds in the context of working during the COVID‐19 pandemic. Methods: Fourteen semistructured interviews were conducted between May 2021 and April 2022 with ethnic minority care home staff in England, who worked during the pandemic. Participants were recruited using convenience and theoretical sampling. Interviews were conducted via telephone or online platforms. A social constructivist grounded theory methodology was utilised in analysing the data. Findings: Participants described five key processes which facilitated or hindered the impact that their experiences had on their identity: dealing with uncertainty and transitioning into a COVID‐19 world; difficult emotions; experiences of discrimination and racism; the response from the care home and societal systems; and the personal vs collective responsibility. When participants' physical and psychological needs went unmet by support structures within the care home and/or society, they experienced a sense of injustice, lack of control and being unvalued or discriminated against by others. Conclusions: This study highlights the importance of recognising the unique needs of staff from diverse ethnic backgrounds working in care homes and adapting working practices to improve impact on identity, job satisfaction and staff retention. Patient and Public Involvement: One care home worker was involved in developing the topic guide and helping to interpret the findings. [ABSTRACT FROM AUTHOR]

Introduction: Using co‐design processes, we aimed to develop an evidence‐based decision guide for family carers and hospital professionals to support decision‐making about eating and drinking for hospital patients with severe dementia. Methods: Following a systematic review, we interviewed people with mild dementia, family carers and hospital professionals in England. We then held co‐design workshops with family carers and hospital professionals. In parallel with the workshops, we used a matrix to synthesize data from all studies and to develop a decision guide prototype. The prototype was iteratively refined through further co‐design workshops and discussions among researchers and Patient and Public Involvement (PPI) representatives. We conducted user testing for final feedback and to finalize the decision guide. Results: Most participants acknowledged the limited benefits of tube feeding and would not use or want it for someone with severe dementia. However, they found decision‐making processes and communication about nutrition and hydration were emotionally demanding and poorly supported in acute hospitals. The co‐design groups developed the aims of the decision guide to support conversations and shared decision‐making processes in acute hospitals, and help people reach evidence‐based decisions. It was designed to clarify decision‐making stages, provide information and elicit the values/preferences of everyone involved. It encouraged person‐centred care, best‐interests decision‐making and multidisciplinary team working. From user testing, family carers and hospital professionals thought the decision guide could help initiate conversations and inform decisions. The final decision guide was disseminated and is being used in clinical practice in England. Conclusion: We used rigorous and transparent processes to co‐design the decision guide with everyone involved. The decision guide may facilitate conversations about nutrition and hydration and help people reach shared decisions that meet the needs and preferences of people with severe dementia. Future evaluation is required to test its real‐world impacts. Patient or Public Contribution: People with mild dementia, family carers and hospital professionals contributed to the design of the decision guide through the interviews and co‐design workshops. PPI members helped design study procedures and materials and prepare this manuscript. [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]

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: 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: Studies have identified young adults as more likely to use emergency departments for 'clinically unnecessary' problems, with limited similar evidence for emergency ambulance use. Media portrayals depict young adults as motivated by 'convenience', but little research has explored the reasons for their help‐seeking behaviour. Methods: Qualitative interviews with 16 young adults (18‐30) considered by clinicians to have made unnecessary use of emergency ambulance, emergency department or an urgent GP appointment. Data analysis was informed by interpretive phenomenological analysis. Findings: A number of interrelated factors contributed to participants' decisions. They were anxious about the seriousness of their symptoms, sometimes exacerbated by reduced coping capacity due to poor mental health or life stresses. They looked to others to facilitate their decision making, who sometimes encouraged urgent contact. They wanted to avoid impact on existing day‐to‐day commitments including work or study. They had strong views about different health services, sometimes based on frustration with lack of resolution of on‐going health problems. Convenience was not identified as a significant factor, although some actions could be interpreted in this light if the context was not considered. Conclusions: Young adults make 'clinically unnecessary' use of urgent and emergency care for more than convenience. Their decisions need to be understood in relation to the complexity of their experience, including lack of confidence in making health‐related decisions, lowered coping capacity and concern to maintain normal daily life. [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: 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: Having a stroke or transient ischaemic attack increases the risk of a subsequent one, especially with high blood pressure (BP). Home‐based BP management can be effective at maintaining optimal BP. Objective: To describe the optimization of a digital intervention for stroke patients and the value of participant diversity, using the person‐based approach (PBA) and integral patient and public involvement (PPI). Setting and participants: Stroke patients recruited from primary care and community settings, and health‐care professionals in primary care, in England and Ireland. Design: Three linked qualitative studies conducted iteratively to develop an intervention using the PBA, with integral PPI. Intervention: The BP: Together intervention, adapted from existing BP self‐monitoring interventions, is delivered via mobile phone or web interface to support self‐monitoring of BP at home. It alerts patients and their clinicians when a change in antihypertensive medication is needed. Findings: Feedback from a diverse range of participants identified potential barriers, which were addressed to improve the intervention accessibility, feasibility and persuasiveness. Easy‐to‐read materials were developed to improve usability for patients with aphasia and lower literacy. The importance of including family members who support patient care was also highlighted. Feedback messages regarding medication change were refined to ensure usefulness for patients and clinicians. Discussion: Input from PPI alongside qualitative research with a diverse study sample allowed the creation of a simple and equitable BP management intervention for stroke patients. Patient involvement: Two PPI co‐investigators contributed to design, conduct of study, data interpretation and manuscript preparation; community PPI sessions informed early planning. Study participants were stroke patients and family members. [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]

Objective: Evidence for early intervention and prevention‐based approaches for improving social and emotional health in young children is robust. However, rates of participation in programmes are low. We explored the dynamics which affect levels of community readiness to address the issues of social and emotional health for pregnant women, young children (0‐4 years) and their mothers. Setting: A deprived inner‐city housing estate in the north of England. The estate falls within the catchment area of a project that has been awarded long‐term funding to address social and emotional health during pregnancy and early childhood. Methods: We interviewed key respondents using the Community Readiness Model. This approach applies a mixed methodology, incorporating readiness scores and qualitative data. A mean community readiness score was calculated enabling the placement of the community in one of nine possible stages of readiness. Interview transcripts were analysed using a qualitative framework approach to generate contextual information to augment the numerical scores. Results: An overall score consistent with vague awareness was achieved, indicating a low level of community readiness for social and emotional health interventions. This score suggests that there will be a low likelihood of participation in programmes that address these issues. Conclusion: Gauging community readiness offers a way of predicting how willing and prepared a community is to address an issue. Modifying implementation plans so that they first address community readiness may improve participation rates. [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 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 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: The involvement of consumers and the general public in improving cancer services is an important component of health services. However, consumer involvement in cancer research is relatively unexplored. The objective of this study was to explore different ways of involving consumers in cancer research in one regional network. Methods: Thames Valley Cancer Network Consumer Research Partnership (CRP) group was formed in 2009. The group consists of consumers and professionals to help in promoting consumer involvement in Cancer Research in the Thames Valley. This study evaluated the project of consumer involvement in cancer research in the Thames Valley from March 2010 to March 2011. We used different indices to judge the level of consumer involvement: number of projects involving consumers through the group, types of projects, level of involvement (ranged from consultation on research documents to collaborating in preparing grant applications) and the methods of involving consumers in cancer research. Results: Fifteen projects were submitted to the CRP group during the 12‐month period studied. Of these, eight projects were clinical trials, three were qualitative research projects, two were patients' surveys and two were non‐randomized interventional studies. Seven projects requested consumer involvement on patient information sheets for clinical trials. Of these seven applications, three also requested consumers' help in designing research questionnaires and another three requested that consumers should be involved in their project management group. In addition, four projects involved consumers in the proposal development phase and another four projects asked for advice on how to increase trial recruitment, conduct patient interviews or help with grant applications. Conclusions: The creation of the CRP and this audit of its activity have documented consumer involvement in cancer research in the Thames Valley. We have clearly shown that consumers can be involved in designing and managing cancer research projects. [ABSTRACT FROM AUTHOR]

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 Pregnancy and the first years of life are important times for future child well-being. Early identification of families and children who might be likely to experience poorer outcomes could enable health professionals and parents to work together to promote each child's well-being. Little is known about the acceptability and feasibility of such an approach to parents. Objective To investigate parents' views about how health professionals should identify and work with families who may benefit from additional input to maximize their children's future health and well-being. Design A qualitative study using focus groups. Setting and participants Eleven focus groups were conducted with a total of 54 parents; 42 mothers and 12 fathers living in the north of England. Results Parents welcomed the idea of preventive services. They strongly believed that everyone should have access to services to enhance child well-being whilst recognizing that some families need additional support. Making judgements about who should receive additional services based on specific criteria evoked powerful emotions because of the implication of failure. Parents projected a belief in themselves as 'good parents' even in adverse circumstances. Conclusions Targeted additional preventive services can be acceptable and welcome if health professionals introduce them sensitively, in the context of an existing relationship, providing parents are active participants. [ABSTRACT FROM AUTHOR]

Background Over recent years, several initiatives have impacted on the referral of patients to secondary care, most notably targets for urgent referral in suspected cancer and the patient choice agenda. At the same time, improved long-term survival in cancer has increased numbers attending follow-up, doubts about the effectiveness of specialist follow-up have emerged, and alternative models of follow-up have been tested. Aim The aim of the study was to explore patient and carer perspectives on the flexibility and responsiveness of cancer services. This article focuses on findings relating to referral, subsequent outpatient appointments and cessation of outpatient follow-up. Methods Issues were explored in a qualitative study using face-to-face interviews with a purposive sample of 54 people affected by cancer. Data were analysed concurrently with data collection, using qualitative analysis software. Findings The study gave rise to a number of salient themes. Links were identified between three of these: choice and responsiveness during referral; the flexibility and responsiveness of outpatient appointment systems; and negotiating cessation of follow-up. It appeared that policy on urgent referrals might be adversely affecting practice relating to appointment systems and the continuance of follow-up. Discussion and conclusions Hospital-based cancer follow-up is being given decreasing priority because of doubts about effectiveness and a target-driven focus on referral. This is impacting on patients, who may value outpatient follow-up as a 'safety net' but have difficulties in obtaining appointments, and may be discharged without negotiation or adequate support. For these reasons, new forms of flexible/responsive aftercare are urgently needed. [ABSTRACT FROM AUTHOR]

Objective To explore expectations and experiences of online cognitive behavioural therapy (CBT) among primary-care patients with depression, focusing on how this mode of delivery impacts upon the therapeutic experience. Design Qualitative study, using repeat semi-structured interviews with patients before and after therapy. The study was conducted in parallel with a randomized controlled trial examining the effectiveness and cost-effectiveness of online CBT for patients with depression. Participants Twenty-four patients with depression recruited from five general practices in southwest England, who were offered up to 10 sessions of CBT, delivered via the internet by a psychologist. Results Most participants accessed the therapy from their home computer and found this to be a major advantage, in terms of convenience and fitting therapy into their daily routine, with any technical problems quickly resolved. Two key themes regarding expectations and experiences of online CBT were: developing a virtual relationship with a therapist, and the process of communicating thoughts and emotions via an online medium. Online CBT seems to be acceptable to, and experienced as helpful by, certain subgroups of patients with depression, particularly those who are familiar with computers, feel comfortable with writing their feelings down, enjoy the opportunities to review and reflect that written (or typed) communication offers are attracted to the ‘anonymity’ of an online therapeutic relationship and are open to the proactive requirements of CBT itself. However, on-line CBT may feed into the vulnerability of depressed people to negative thoughts, given the absence of visual cues and the immediate response of face-to-face interaction. Conclusions Online CBT has the potential to enhance care for patients with depression who are open to engaging in ‘talking’ (or typing) therapies as part of their treatment. If online CBT is to be provided via the NHS, it is important to establish patient preferences regarding this mode of delivery and ensure that referral practices are appropriately targeted. The results of our main trial will provide evidence regarding the effectiveness and cost-effectiveness of receiving therapy via this modality. [ABSTRACT FROM AUTHOR]