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Background: Working together and co‐production with public advisors have become popular among health researchers. This practice extends to doctoral researchers who involve public advisors at different stages of their research or throughout their doctoral journey. Objective: A doctoral researcher and two public advisors jointly evaluated public involvement in doctoral research. Methods: Using the established public involvement evaluation framework by Gibson and colleagues, public advisors and a doctoral researcher mapped and evaluated their experiences of public involvement in doctoral research. The four‐dimensional framework allowed the authors to reflect on (1) the strength of the public voice, (2) the number of ways in which public advisors had an opportunity to get involved, (3) whether the discussion was about the public or organisation's (doctoral researcher, university or funder) concerns and (4) if the organisation changed or resisted feedback. Results are presented in a diagrammatic and narrative way. Results: Public advisors saw themselves as having a stronger voice in doctoral research than the doctoral researcher perceived. All agreed that there existed multiple ways for public advisors to be involved. Public advisors' feedback was taken on board, but it was also limited due to restrictions of what the doctoral programme allowed. Conclusion: Public advisors ensured that the doctoral research was more relevant to the public. The ongoing involvement also shaped the doctoral researcher's thinking and views. Patient and Public Involvement: Two public advisors were involved throughout the 3 years of this doctoral research. They co‐evaluated this involvement and are co‐authors of this paper. [ABSTRACT FROM AUTHOR]

Introduction: To contribute to addressing diagnostic health inequalities in the United Kingdom, this review aimed to investigate determinants of diagnostic service use amongst people experiencing high deprivation in the United Kingdom. Methods: A systematic review was conducted using three databases (EBSCO, Web of Science and SCOPUS) to search studies pertaining to diagnostic service use amongst people experiencing high deprivation. Search terms related to diagnostics, barriers and facilitators to access and deprivation. Articles were included if they discussed facilitators and/or barriers to diagnostic service access, contained participants' direct perspectives and focussed on individuals experiencing high deprivation in the United Kingdom. Articles were excluded if the full text was unretrievable, only abstracts were available, the research did not focus on adults experiencing high deprivation in the United Kingdom, those not including participants' direct perspectives (e.g., quantitative studies) and papers unavailable in English. Results: Of 14,717 initial papers, 18 were included in the final review. Determinants were grouped into three themes (Beliefs and Behaviours, Emotional and Psychological Factors and Practical Factors), made up of 15 sub‐themes. These were mapped to a conceptual model, which illustrates that Beliefs and Behaviours interact with Emotional and Psychological Factors to influence Motivation to access diagnostic services. Motivation then influences and is influenced by Practical Factors, resulting in a Decision to Access or Not. This decision influences Beliefs and Behaviours and/or Emotional and Psychological Factors such that the cycle begins again. Conclusion: Decision‐making regarding diagnostic service use for people experiencing high deprivation in the United Kingdom is complex. The conceptual model illustrates this complexity, as well as the mediative, interactive and iterative nature of the process. The model should be applied in policy and practice to enable understanding of the factors influencing access to diagnostic services and to design interventions that address identified determinants. Patient or Public Contribution: Consulting lived experience experts was imperative in understanding whether and how the existing literature captures the lived experience of those experiencing high deprivation in South England. The model was presented to lived experience experts, who corroborated findings, highlighted significant factors for them and introduced issues that were not identified in the review. [ABSTRACT FROM AUTHOR]

Background: Liver disease is an increasing cause of morbidity and mortality in the United Kingdom and can be challenging to live with in the advanced stages. There has been little research exploring the healthcare experiences of UK individuals with decompensated disease when the liver cannot carry out its functions properly. A PhD research project was developed with people who have liver disease to explore care experiences in decompensated advanced liver disease. Public involvement (PI) is an essential aspect of meaningful health research, and this paper reports on the progression of our PI approach in this ongoing study. Objective: To embed PI throughout the research project to ensure that the study is meaningful to individuals with liver disease and the people who support them. Methods: The research adopts a Constructivist Grounded Theory methodology to develop a theory of care experience. Various PI approaches were considered in developing the PI strategy for this qualitative study. Initially, Embedded consultation was the preferred model, which has evolved to include aspects of collaboration and coproduction. A PI group was set up to oversee the project through the national public engagement website VOICE, and reflections on PI from three members of the group are included in this paper to illuminate the PI process. Results: Six individuals with liver disease and three carers from across the United Kingdom are part of an ongoing PI group. Their role includes commenting on the findings of the systematic literature review for this project and contributing to decisions about recruitment, data collection and data analysis. Additionally, they had a direct impact on changing the focus of the research. The PI group will continue involvement until the completion of the project. Conclusion: Successfully embedding PI into doctoral research, as demonstrated in this project, requires commitment, planning and dedication to reciprocal working for the benefit of PI contributors as well as the research. This approach could be adopted by other postgraduate researchers. Patient or Public Contribution: This project is overseen by the PI group, whose contribution is described throughout, including reflections from three PI group members. [ABSTRACT FROM AUTHOR]

Background: Limited research concerning existing inequities in mental health care and support services in the United Kingdom captures perceptions and lived experiences of the significantly underrepresented Muslim population. Methods: Underpinned by social constructivist theory, we used consultation to facilitate public and patient involvement and engagement (PPIE) to identify inequities in mental health care and support experienced by Muslims from minoritised ethnic communities living in deprived areas in Liverpool, UK. The rationale was to (a) better inform standards and policies in healthcare and (b) provide a psychologically safe space to members of the Muslim community to share perceptions and experiences of mental health care and support services. To ensure trustworthiness of the data, member checking was adopted. This paper describes the procedure to achieving this consultation, including our recruitment strategy, data collection and analysis as well as key findings. Findings: Twenty‐seven consultees attended the women's consultation and eight consultees attended the men's consultation. Consultees were from Yemeni, Somali, Sudanese, Egyptian, Algerian, Pakistani and Moroccan communities and share the Islamic faith. Four key interlinked themes were identified from consultees' narratives: (1) broken cycle of trust; (2) an overmedicalised model of care; (3) community mental health prevention initiatives; and (4) culturally conscious training and education. Conclusions: The Muslim population has identified numerous barriers to accessing mental health support and there is a need to resource activities that would aid deeper understanding of mental health support needs through continuous and meaningful community initiatives. This would afford mental health practitioners and organisations opportunities for developing realistic anti‐racism strategies, effectively adopting social prescription, strengthening partnerships and collaborations aimed at supporting delivery of evidence‐based mental health care provisions to tackle mental health inequities. Patient and Public Involvement: This paper reports on the involvement and engagement of Muslims from minoritised ethnic communities living in the Liverpool city region. [ABSTRACT FROM AUTHOR]

Background: Liver disease is a growing health concern and a major cause of death. It causes multiple symptoms, including financial, psychological and social issues. To address these challenges, palliative care can support people alongside active treatment, and towards the end of life, but little is known about the care experiences of individuals with liver disease in the United Kingdom. This review aimed to explore the palliative and end‐of‐life care experiences of people with liver disease in the United Kingdom. Method: A systematic review was conducted using a five‐stage process and following Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. Searches were across Web of Science, Scopus, EBSCO and grey literature until 10 May 2023. The review was registered through International Prospective Register of Systematic Reviews (PROSPERO). NVivo 12.5 was used to facilitate data analysis (systematic review registration: PROSPERO CRD42022382649). Results: Of 6035 papers (excluding duplicates) found from searches, five met the inclusion criteria of primary research related to adults with liver disease receiving palliative and/or end‐of‐life care in the United Kingdom, published in English. Reflexive thematic analysis of the data was conducted. The themes identified were the experiences of people with liver disease of relating to healthcare professionals, using services, receiving support, and experiences of information and communication. These were connected by an overarching concept of disempowerment versus empowerment, with the notion of person‐centred care as an important feature. Conclusion: This review has found variations in the care experiences of people with advanced liver disease towards the end of life and an overall lack of access to specialist palliative care services. Where services are designed to be person‐centred, experiences are more empowering. Further research is needed but with recognition that it is often unclear when care for people with liver disease is palliative or end‐of‐life. Patient and Public Contribution: An online public involvement workshop was held on 18 April 2023 through Voice (2023). This included four people with liver disease and four carers to discuss the review findings and to design a qualitative research study to further explore the topic. [ABSTRACT FROM AUTHOR]

Introduction: There is growing scientific and policy recognition that optimising health before a potential pregnancy (preconception health) improves reproductive outcomes and the lifelong health of future children. However, public awareness on this topic is low. We conducted a public consultation to develop language recommendations and identify and prioritise approaches to inform research and improve public awareness of preconception health. Methods: A public consultation was undertaken with people of any gender aged 18–50 years living in the United Kingdom who were not currently expecting a child. Public contributors were recruited through patient and public involvement, community and support groups, an existing cohort study, and an LGBTQ+ charity. An initial round of online group discussions (February/March 2021) explored public contributors' knowledge of preconception health, their recommendations for appropriate language, and ideas about public health approaches. In a subsequent discussion round (May 2021), language recommendations were refined and suggested approaches prioritised. Discussions were summarised based on notes taken by two researchers. Results: Fifty‐four people joined the initial discussion round (66% women, 21% men, 13% nonbinary or transgender; 55% aged 18–30 years, 30% 31–40 years, 15% 41–50 years). Of these, 36 people (67%) participated in the subsequent round. Very few had heard the term 'preconception health', understood what it means, or why and for whom it is important. They recommended avoiding unfamiliar terms without further explanation (e.g., preconception health, medical terms), using language that is positive, encouraging and gender‐sensitive where possible, and using messages that are specific, nonjudgmental and realistic. The phrases 'health and well‐being during the childbearing years', 'health and well‐being before pregnancy and parenthood' and 'planning for parenthood' resonated with most public contributors. School‐based education, social media campaigns and the National Health Service emerged as priority approaches/settings for raising awareness. Conclusion: This public consultation produced recommendations from a diverse group of people of reproductive age in the United Kingdom to improve language and prioritise approaches that increase public understanding of preconception health in ways that are relevant and appropriate to them. This should begin in schools and will require adaptation of curricula, alongside co‐development of public awareness campaigns and guidance for healthcare professionals. Patient or Public Contribution: This public consultation included a diverse group of members of the public. They were not involved in the original design of the project, but following the initial round of online group discussions, they contributed to the interpretation and refinement of the emerging concepts in a subsequent round of group meetings. After the consultation activity, public contributors formed a Public Advisory Group and have subsequently been involved in other studies on the same topic. Two public contributors (E.R. and F.F.) provided critical input in the preparation and revision of this manuscript and are co‐authors of the paper. [ABSTRACT FROM AUTHOR]

Introduction: Co‐production is gaining increasing recognition as a good way of facilitating collaboration among different stakeholders, including members of the public. However, it remains an ambiguous concept as there is no definitive or universal model of co‐production or clarity on what constitutes a good co‐production approach. This paper draws on the reflections of the academic researchers, practitioners and public advisors involved in co‐producing a priority‐setting exercise. The exercise was conducted by the Primary and Community Health Services (PCHS) Theme of the National Institute for Health and Care Research Applied Research Collaboration for Kent, Surrey and Sussex (NIHR ARC KSS). Methods: We collected data through written and verbal reflections from seven collaborators involved in the PCHS priority‐setting exercise. We used Gibbs' model of reflection to guide the data collection. We then analysed the data through an inductive, reflexive thematic analysis. Results: A common thread through our reflections was the concept of 'sharing'. Although co‐production is inherently shared, we used the virtuous cycle to illustrate a sequence of sharing concepts during the research cycle, which provides the underpinnings of positive co‐production outcomes. We identified six themes to denote the iterative process of a shared approach within the virtuous cycle: shared values, shared understanding, shared power, shared responsibilities, shared ownership and positive outcomes. Conclusion: Our results present a virtuous cycle of co‐production, which furthers the conceptual underpinnings of co‐production. Through our reflections, we propose that positive co‐production outcomes require foundations of shared values and a shared understanding of co‐production as a concept. These foundations facilitate a process of shared power, shared responsibilities and shared ownership. We argue that when these elements are present in a co‐production exercise, there is a greater potential for implementable outcomes in the communities in which the research serves and the empowerment of collaborators involved in the co‐production process. Public Members' Contributions: Three members of the public who are public advisors in the NIHR ARC KSS were involved in the priority‐setting exercise that informed this paper. The public advisors were involved in the design of the priority‐setting exercise and supported participants' recruitment. They also co‐facilitated the focus groups during data collection and were involved in the data analysis, interpretation and preparation of the priority‐setting report. For this current manuscript, two of them are co‐authors. They provided reflections and contributed to the writing and reviewing of this manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Those with severe and enduring mental ill health are at greater risk of long‐term physical health conditions and have a reduced life expectancy as a result. Multiple factors compound this health inequality, and the need for setting research priorities in this area is highlighted with physical and mental healthcare services being separate, and limited multimorbidity research. Methods: The aim of this exercise was to work in partnership with healthcare professionals and carers, family, friends and individuals with lived experience of both mental and physical health conditions, to set research priorities to help people with mental health conditions to look after their physical health. The exercise was guided by the James Lind Alliance approach. For this, a steering group was set up, two surveys were completed and a final priority workshop was conducted. Results: This priority setting exercise guided by people's needs and lived experience has produced a set of well‐defined research topics. Initially, 555 research questions were suggested in the first survey, which were refined to 54 questions for the second survey. A priority setting workshop was then conducted to get the final 10 priorities. Conclusions: Taking these topics forward to improve services and treatment for both mental and physical ill health may in turn improve physical health and lessen the reduced life expectancy of those living with mental ill health. Patient or Public Contribution: This work was completed in collaboration with people who have lived experience of mental ill health and physical health conditions, as well as carers, family and friends. Their contribution has been significant for this work from piloting surveys, amending language used and educating the researchers and contributing to this paper. The initial work was completed with a steering group and continued with surveys and workshops. [ABSTRACT FROM AUTHOR]

Background: Motor neuron disease (MND) (also known as amyotrophic lateral sclerosis) is a life‐limiting neurodegenerative condition. In up to 20% of people with MND, a pathogenic variant associated with autosomal dominant inheritance can be identified. Children of people carrying a pathogenic variant have a 50% chance of inheriting this and a higher, although harder to predict, chance of developing the disease compared to the general adult population. This paper explores the experience of living with the genetic risk of MND. Methods: We undertook a UK‐based interview study with 35 individuals, including: 7 people living with genetically‐mediated forms of MND; 24 asymptomatic relatives, the majority of whom had an increased risk of developing the disease; and 4 unrelated partners. Results: We explore how individuals make sense of genetic risk, unpacking the interplay between genetic knowledge, personal perception, experiences of the disease in the family, age and life stage and the implications that living with risk has for different aspects of their lives. We balance an emphasis on the emotional and psychological impact described by participants, with a recognition that the salience of risk fluctuates over time. Furthermore, we highlight the diverse strategies and approaches people employ to live well in the face of uncertainty and the complex ways they engage with the possibility of developing symptoms in the future. Finally, we outline the need for open‐ended, tailored support and information provision. Conclusions: Drawing on wider literature on genetic risk, we foreground how knowledge of MND risk can disrupt individuals' taken‐for‐granted assumptions on life and perceptions of the future, but also its contextuality, whereby its relevance becomes more prominent at critical junctures. This research has been used in the development of a public‐facing resource on the healthtalk.org website. Patient or Public Contribution: People with experience of living with genetic risk were involved throughout the design and conduct of the study and advised on aspects including the topic guide, sampling and recruitment and the developing analysis. Two patient and public involvement contributors joined a formal advisory panel. [ABSTRACT FROM AUTHOR]

Introduction: Disparities in the uptake of routine and COVID‐19 vaccinations have been observed in migrant populations, and attributed to issues of mistrust, access and low vaccine confidence. Participatory research approaches and behaviour change theory hold the potential for developing tailored vaccination interventions that address these complex barriers in partnership with communities and should be explored further. Methods: This study used a theory‐informed, community‐based participatory research approach to co‐design a culturally tailored behaviour change intervention aimed at increasing COVID‐19 vaccine uptake among Congolese migrants in London, United Kingdom (2021–2022). It was designed and led by a community‐academic partnership in response to unmet needs in the Congolese community as the COVID‐19 pandemic started. Barriers and facilitators to COVID‐19 vaccination, information and communication preferences, and intervention suggestions were explored through qualitative in‐depth interviews with Congolese migrants, thematically analysed, and mapped to the theoretical domains framework (TDF) and the capability, opportunity, motivation, behaviour model to identify target behaviours and strategies to include in interventions. Interventions were co‐designed and tailored in workshops involving Congolese migrants. Results: Thirty‐two Congolese adult migrants (24 (75%) women, mean 14.3 (SD: 7.5) years in the United Kingdom, mean age 52.6 (SD: 11.0) years) took part in in‐depth interviews and 16 (same sample) took part in co‐design workshops. Fourteen barriers and 10 facilitators to COVID‐19 vaccination were identified; most barrier data related to four TDF domains (beliefs about consequences; emotion; social influences and environmental context and resources), and the behavioural diagnosis concluded interventions should target improving psychological capability, reflective and automatic motivations and social opportunities. Strategies included culturally tailored behaviour change techniques based on education, persuasion, modelling, enablement and environmental restructuring, which resulted in a co‐designed intervention comprising community‐led workshops, plays and posters. Findings and interventions were disseminated through a community celebration event. Conclusions: Our study demonstrates how behavioural theory can be applied to co‐designing tailored interventions with underserved migrant communities through a participatory research paradigm to address a range of health issues and inequalities. Future research should build on this empowering approach, with the goal of developing more sensitive vaccination services and interventions which respond to migrant communities' unique cultural needs and realities. Patient or Public Contribution: Patient and public involvement (PPI) were embedded in the participatory study design and approach, with community members co‐producing all stages of the study and co‐authoring this paper. An independent PPI board (St George's Migrant Health Research Group Patient and Public Involvement Advisory Board) comprising five adult migrants with lived experience of accessing healthcare in the United Kingdom were also consulted at significant points over the course of the study. [ABSTRACT FROM AUTHOR]

Introduction: People who call emergency ambulances frequently are often vulnerable because of health and social circumstances, have unresolved problems or cannot access appropriate care. They have higher mortality rates. Case management by interdisciplinary teams can help reduce demand for emergency services and is available in some UK regions. We report results of interviews with people who use emergency ambulance services frequently to understand their experiences of calling and receiving treatment. Methods: We used a two‐stage recruitment process. A UK ambulance service identified six people who were known to them as frequently calling emergency services. Through third‐sector organisations, we also recruited nine individuals with healthcare experiences reflecting the characteristics of people who call frequently. We gained informed consent to record and transcribe all telephone interviews. We used thematic analysis to explore the results. Results: People said they make frequent calls to emergency ambulance services as a last resort when they perceive their care needs are urgent and other routes to help have failed. Those with the most complex health needs generally felt their immediate requirements were not resolved and underlying mental and physical problems led them to call again. A third of respondents were also attended to by police and were arrested for behaviour associated with their health needs. Those callers receiving case management did not know they were selected for this. Some respondents were concerned that case management could label frequent callers as troublemakers. Conclusion: People who make frequent calls to emergency ambulance services feel their health and care needs are urgent and ongoing. They cannot see alternative ways to receive help and resolve problems. Communication between health professionals and service users appears inadequate. More research is needed to understand service users' motivations and requirements to inform design and delivery of accessible and effective services. Patient or Public Contribution: People with relevant experience were involved in developing, undertaking and disseminating this research. Two public contributors helped design and deliver the study, including developing and analysing service user interviews and drafting this paper. Eight public members of a Lived Experience Advisory Panel contributed at key stages of study design, interpretation and dissemination. Two more public contributors were members of an independent Study Steering Committee. [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: Migrant and ethnic inequalities in maternal and perinatal mortality persist across high‐income countries. Addressing social adversity and inequities across the childbirth trajectory cannot be left to chance and the good intentions of practitioners. Robust, evidence‐based tools designed to address inequity by enhancing both the quality of provision and the experience of care are needed. Methods: An inductive modelling approach was used to develop a new evidence‐based conceptual model of woman–midwife relationships, drawing on data from an ethnographic study of relationships between migrant Pakistani women and midwives, conducted between 2013 and 2016 in South Wales, UK. Key analytic themes from early data were translated into social–ecological concepts, and a model was developed to represent how these key themes interacted to influence the woman–midwife relationship. Results: Three key concepts influencing the woman–midwife relationship were developed from the three major themes of the underpinning research: (1) Healthcare System; (2) Culture and Religion; and (3) Family Relationships. Two additional weaving concepts appeared to act as a link between these three key concepts: (1) Authoritative Knowledge and (2) Communication of Information. Social and political factors were also considered as contextual factors within the model. A visual representation of this model was developed and presented. Conclusions: The model presented in this paper, along with future work to further test and refine it in other contexts, has the potential to impact on inequalities by facilitating future discussion on cultural issues, encouraging collaborative learning and knowledge production and providing a framework for future global midwifery practice, education and research. Patient or Public Contribution: At the outset of the underpinning research, a project involvement group was created to contribute to study design and conduct. This group consisted of the three authors, an Advocacy Officer at Race Equality First and an NHS Consultant Midwife. This group met regularly throughout the research process, and members were involved in discussions regarding ethical/cultural/social issues, recruitment methods, the creation of participant information materials, interpretation of data and the dissemination strategy. Ideas for the underpinning research were also discussed with members of the Pakistani community during community events and at meetings with staff from minority ethnic and migrant support charities (BAWSO, Race Equality First, The Mentor Ring). Local midwives contributed to study design through conversations during informal observations of antenatal appointments for asylum seekers and refugees. [ABSTRACT FROM AUTHOR]

Introduction: An admission to a mental health ward is an uncertain and unexpected part of a person's journey with dementia and consequently, families require information about what to expect and how to prepare. This study aimed to establish the information needs of people with dementia and their families at the point of admission to a mental health ward and to collate existing ward information leaflets to explore if they meet these information needs. Methods: This research was conducted in two parts: (1) a qualitative study using focus groups, one with people with dementia and family carers with lived experience of such an admission (n = 6), and another with Admiral Nurses (n = 6) to explore information needs at the point of admission. (2) Each National Health Service (NHS) mental health trust (n = 67) was asked to provide a copy of their ward information shared at admission. A total of 30 leaflets were received from 15 NHS trusts; after removing duplicates, 22 were included. A content analysis was conducted to evaluate to what extent leaflets met the information needs identified by focus groups. Results: Two main categories 'honest, accurate and up‐to‐date information' and 'who is the information for' and four subcategories were derived from focus group data. Participants felt that people with dementia and their families were likely to have different information needs. Material for people with dementia needed to be in an accessible format. Information should cover the aim of the admission, a timeline of what to expect and details about how families will be involved in care. Practical information about what to pack and ward facilities was valued. Participants spoke about the need to consider the tone of the information, given that people are likely to be distressed. The information leaflets reviewed did not meet the information needs identified by focus group participants. Conclusions: People with dementia and family carers have different information needs at the point of admission to a mental health ward. Information provided to people with dementia needs to be in an accessible format with content relevant to these needs. Wards should aim to co‐create information to ensure that they meet people's information needs. Patient or Public Contribution: This research was supported by a patient and public involvement (PPI) group of people with dementia and carers who have experience in mental health wards. The idea for the study came from the group and was motivated by their experiences. The PPI group helped with the design of the study and took part in the focus groups. The information generated has been written up in this paper, and the knowledge generated has also been used to co‐create a guide for wards on writing their information leaflets and to support the co‐creation of a public information leaflet by Dementia UK about mental health admissions for people with dementia. [ABSTRACT FROM AUTHOR]

Introduction: A range of nonpharmaceutical public health interventions has been introduced in many countries following the rapid spread of Covid‐19 since 2020, including recommendations or mandates for the use of face masks or coverings in the community. While the effectiveness of face masks in reducing Covid‐19 transmission has been extensively discussed, scant attention has been paid to the lived experience of those wearing face masks. Method: Drawing on 40 narrative interviews with a purposive sample of people in the United Kingdom, with a particular focus on marginalised and minoritized groups, our paper explores experiences of face mask use during the pandemic. Results: We find that face masks have a range of societal, health and safety impacts, and prompted positive and negative emotional responses for users. We map our findings onto Lorenc and Oliver's framework for intervention risks. We suggest that qualitative data offer particular insights into the experiences of public health interventions, allowing the potential downsides and risks of interventions to be more fully considered and informing public health policies that might avoid inadvertent harm, particularly towards marginalised groups. Patient or Public Contribution: The study primarily involved members of the public in the conduct of the research, namely through participation in interviews (email and telephone). The conception for the study involved extensive discussions on social media with a range of people, and we received input and ideas from presentations we delivered on the preliminary analysis. [ABSTRACT FROM AUTHOR]

Introduction: A person‐centred model of care, developed in the early days of the HIV epidemic when there were no effective treatments for HIV, led to relatively close relationships between carers and people living with HIV (PLWH). Our study examines the experiences of carers using a relational framework, exploring the traumas and challenges involved, coping practices instigated by carers and the emergence of 'relational traumatic growth' opportunities. Methods: Twenty‐two UK healthcare workers and charity volunteers working with PLWH from the early years of the epidemic were recruited. Semistructured interviews were used to elicit participants' own stories of working with PLWH, from their initial involvement to the present time, and their reflections on the personal impact of working in the field of HIV. Data were analysed using a thematic approach employing relational categories. Results: The impact of care was related to the formation of close relationships, identification with PLWH, high numbers of deaths and the difficulties and challenges encountered relationally. Participants described attempts to cope through informal and formal support, as well as endeavours to manage professional boundaries. Various ways of making sense of experiences were described, ranging from denial to abandoning the HIV field, to intense commitment. For some, traumatic experiences lead to validation, a search for personal meaning and managing the sense of loss with an exploration of further ventures, contributing to the achievement of relational traumatic growth. Conclusion: The intensity of relationships in HIV work, developed through the emotional and practical work of caring for PLWH, led healthcare workers and volunteers to experience a range of psychological consequences, both negative (including distress and emotional exhaustion) and also positive (such as acquiring a sense of purpose). Patient or Public Contribution: People living with HIV and those working with them were involved in the initial study conceptualization and design. The second and fourth authors of this paper were professionals working in HIV throughout the pandemic and have led on all aspects of the study. People living with HIV and those working with them additionally guided participant selection by suggesting participants and supporting recruitment. Narrative transcripts were checked and amended (if necessary) by participants. Initial findings were presented at the AIDS impact conference, where PLWH and those working with them attended and feedback on important ideas that helped to prioritize and shape the study findings. [ABSTRACT FROM AUTHOR]

Introduction: This paper explores doctor–patient and companion communication about care decisions in a UK emergency department (ED). Doctors interface between patients and healthcare systems and facilitate access to care across a range of encounters, drawing on information and authority to make and communicate clinical care decisions. Materials and Methods: We explored characteristics of communication through ethnographic observation of 16 video‐recorded case studies of ED consultations (average length: 1 h) collected over 6 months. Companions were present in 10 cases. We conducted a framework analysis to understand the roles of doctors, consultants, patients and companions in relaying ED care decisions. Findings: We present two cases to reflect companion roles and their effect on the consultation. The urgency for care and scarcity of resources means clinicians justify decisions and strategize to move patients along ED pathways. Discussion: Everyday care interactions between patients and doctors are goal‐oriented and companions participate by providing case information, querying decisions and advocating for care. Our findings reflect how doctors justify decisions made in communicating the next steps in ways that characterize the clinical encounter. Conclusion: By exploring everyday interactions our study contributes to a growing understanding of patient–clinician and companion communication in the ED. Patient or Public Contribution: Patients and caregivers voluntarily participated in data collection and consented to video recordings being conducted of ED consultations between them and junior doctors. There was extensive consultation with all grades of staff about the acceptability of the work and the best way to conduct it to minimize the impact on patients and staff. Through this manuscript, we have demonstrated the presence and important role of companions. On reflection it would have been valuable to have included patients and companions in discussions about the work; however, this project was conducted with very limited funding and no resources were committed to patient and public involvement. Given the setting and scope of the study, it was not feasible to involve patients or members of the public in other stages of the research or preparation of the manuscript. We recognize this as a potential limitation of the work. [ABSTRACT FROM AUTHOR]

Introduction: British South Asians have a higher prevalence of overweight and obesity than the wider population. Bradford (UK), with its high Pakistani presence and levels of economic deprivation, has exceptionally high instances, especially in deprived areas where many Pakistanis reside. British Pakistani women in Bradford are more likely to be overweight and obese. There is uncertainty on how these women can be aided to manage their weight. Therefore, the objective of this study was to explore the obesity concerns of Pakistani women living in deprived inner‐city areas of Bradford. Methods: Three focus groups interviews were carried out with 23 Pakistani women living in deprived areas of Bradford. Data were analysed thematically. Results: This exploratory study identified a wide range of concerns that women had around managing their weight. Participants disclosed distrust in information given around medication, conflicting dietary information and reported low levels of trust in women‐only organized physical activities. Cultural barriers were identified, which included the gender role of the woman, the lack of culturally appropriate dietary advice, cultural misunderstandings of what constitutes a healthy diet and healthy weight, the lack of culturally suitable exercise facilities and conforming to family and community expectations. Other concerns were language barriers around a lack of understanding, the inability to read Urdu and reliance on others to translate information. Conclusion: These findings have implications for researchers, local authorities, policy makers and others with an interest in reducing the rates of obesity in this population. Recommendations include training health practitioners to be culturally aware of the diet and eating practices of this community, exploring different ways to support socially isolated women to be more physically active at home, addressing physical activity and diet misconceptions and designing obesity management information materials appropriate for a range of literacy levels. Patient or Public Contribution: Public contributors were involved in the development of the interview guide and design of the research. A pilot focus group with participants not included in the present paper was used to help test and refine the focus group questions. Interview transcripts were member checked by participants, and participants assisted with data analysis. [ABSTRACT FROM AUTHOR]

Background: CBT is an effective treatment for depression, but access varies across the United Kingdom. Online CBT increases access. The INTERACT platform was designed to support patient engagement in CBT, enabling therapists to deliver high‐intensity CBT via typed instant messaging and allowing patients and therapists access to an integrated online library of resources during and between sessions. Methods: The INTERACT trial aimed to evaluate this integrated approach to delivering CBT for primary care patients with depression. A nested qualitative study was conducted within the trial. Interviews were conducted with 20 patients who received the intervention, 9 therapists who delivered it and 3 therapist supervisors. Data were analysed using thematic analysis. Results: The combination of receiving support from a therapist and having access to integrated online CBT resources enabled patients to better manage their depression. Platform benefits included the opportunity to review transcripts to clarify how to complete homework tasks and track progress in managing their depression. The typing process allowed reflection and a focused discussion. However, less could be covered than during an in‐person session, which reduced therapists' expectations around goal setting. Patients who did not complete therapy struggled with the typing and found the CBT approach too demanding. Conclusion: Findings highlight the importance of establishing patient and therapist goals and expectations about what can be achieved in CBT mediated by typing. Some patients are comfortable communicating via typing and are motivated to utilise online resources in between sessions. Exploring the benefits and challenges of typed CBT with patients will enable them to make an informed choice about referral for this novel approach to therapy. Patient or Public Contribution: Patients, service users and members of the public were involved in the study design and management. Substantial pilot work gathered stakeholder feedback and informed the design of the intervention, before undertaking the RCT. Coauthor P.L. is a service user representative co‐applicant and member of the management group responsible for developing the intervention and the trial. Two PPI members sit on the Independent Steering Committee. PPI members provided valuable feedback on the study resources and documents. [ABSTRACT FROM AUTHOR]

Background and Aims: Communication is important in determining how patients understand the diagnostic process. Empirical studies involving direct observation of communication within diagnostic processes are relatively limited. This ethnographic study aimed to identify communicative practices facilitating or inhibiting shared understanding between patients and doctors in UK acute secondary care settings. Methods: Data were collected in acute medical sectors of three English hospitals. Researchers observed doctors as they assessed patients; semistructured interviews were undertaken with doctors and patients directly afterwards. Patients were also interviewed 2–4 weeks later. Case studies of individual encounters (consisting of these interviews and observational notes) were created, and were cross‐examined by an interdisciplinary team to identify divergence and convergence between doctors' and patients' narratives. These data were analysed thematically. Results: We conducted 228 h of observation, 24 doctor interviews, 32 patient interviews and 15 patient follow‐up interviews. Doctors varied in their communication. Patient diagnostic understanding was sometimes misaligned with that of their doctors; interviews revealed that they often made incorrect assumptions to make sense of the fragmented information received. Thematic analysis identified communicative practices that seemed to facilitate, or inhibit, shared diagnostic understanding between patient and doctor, revealing three themes: (1) communicating what has been understood from the medical record, (2) sharing the thought process and diagnostic reasoning and (3) closing the loop and discharge communication. Shared understanding was best fostered by clear communication about the diagnostic process, what had already been done and what was achievable in acute settings. Written information presents an underutilised tool in such communication. Conclusions: In UK acute secondary settings, the provision of more information about the diagnostic process often fostered shared understanding between doctor and patient, helping to minimise the confusion and dissatisfaction that can result from misaligned expectations or conclusions about the diagnosis, and the uncertainty therein. Patient/Public Contribution: A patient and public involvement group (of a range of ages and backgrounds) was consulted. They contributed to the design of the protocol, including the timing of interviews, the acceptability of a follow‐up telephone interview, the development of the interview guides and the participant information sheets. [ABSTRACT FROM AUTHOR]

Introduction: People experiencing homelessness (PEH) have poorer health than housed people but face barriers accessing care and being involved in research. As an often‐ignored group, their contribution to help shape research that is for and about them is essential, as it can strengthen the research proposal, in turn facilitating research and outcomes that are relevant to this vulnerable group. Methods: Six people with experience of homelessness attended a PPI consultation aided by Pathway, a UK homeless peer advocacy charity, which coordinates an 'Experts by Experience' group. We present reflections on conducting PPI with PEH that informed the development of a physiotherapy research proposal. Kolb's Experiential Learning Cycle guided reflections across four stages: (1) describing the PPI experience; (2) reviewing and reflecting on the PPI experience; (3) learning from the PPI experience; and (4) planning and trying out learning. Results: Reflections highlighted the importance of: working closely with an advocacy organisation and leader to reach under‐served people; the diversity of experiences; using familiar venues, contingency and budget planning; flexibility and 'allowing time; talking less; listening more'; planning for early and ongoing PPI, and the potential of mobile 'one‐off' PPI outreach models to reach vulnerable groups. Conclusion: Kolb's Experiential Learning Cycle aided team reflection on feedback from PEH, which helped refine and strengthen a physiotherapy research proposal. The project was unfunded. However, a reflective model helped maximize learning and impact including for future PPI and research. The novel application of Kolb's Experiential Learning Cycle provided structure, facilitated reflection and enhanced individual and collective learning and may benefit capturing learning from PPI with other vulnerable populations. Patient or Public Contribution: We highlight how a PPI consultation with people with experience of homelessness helped shape a funding proposal. Additionally, the reflections of the experts by experience team leader are included. [ABSTRACT FROM AUTHOR]

Introduction: Many people experience persistent symptoms for more than 12 weeks following SARS‐CoV‐2 infection, which is known as post‐COVID‐19 condition (PCS) or Long COVID (LC). PCS can impair people's quality of life and daily functioning. However, there is a lack of in‐depth research exploring the PCS patient journey, as well as gendered aspects of patients' experiences. Methods: Nineteen semi‐structured qualitative interviews were conducted with people living with PCS in the United Kingdom (13 women, 6 men). Interviews were transcribed verbatim and analysed inductively using reflexive thematic analysis. Results: Five main themes were identified: 'Symptom dismissal', 'Lack of information and support', 'Life before and after Long COVID', 'Psychological impact' and 'Acceptance'. A shift overtime to self‐management of symptoms was evident. These themes represent different stages of patients' PCS journey. Narratives indicated that women highlighted dismissal by healthcare professionals (HCPs), which was not as prominent in men's narratives. In addition, women went into more detail about the psychological impact of PCS compared to men. Conclusion: Women with PCS reported symptom dismissal by HCPs, which may have delayed their diagnosis and negatively affected their well‐being. We were not able to explore the experiences of people from non‐conforming gender groups. Raising awareness of these issues among HCPs, particularly general practitioners, could improve patient care in PCS. Patient or Public Contribution: Patient and public involvement consisted of people who took part in the interviews and commented on the themes' interpretation and study conclusions. [ABSTRACT FROM AUTHOR]

Introduction: James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) produce 'Top 10' lists of health and care research priorities through a structured, shared decision‐making process with patients or service users, carers and health or care professionals who identify questions that are most important to them. To date, over 150 PSPs in different areas of health and care have published research priorities. Some PSPs share similar priorities, which could be combined, promoted and addressed through collaborative research to increase value and reduce research waste. Aim: The aim of this study was to identify overarching themes common to JLA PSP priorities across different areas of health and care. Methods: Our analysis included 'Top 10' research priorities produced by UK‐based JLA PSPs between 2016 and 2020. The priorities were coded deductively by the Health Research Classification System (HRCS) health category and research activity. We then carried out online workshops with patients, service users and carers to generate new codes not already captured by this framework. Within each code, multistakeholder inductive thematic analysis was used to identify overarching themes, defined as encompassing priorities from three or more PSPs covering two or more health categories. We used codesign methods to produce an interactive tool for end users to navigate the overarching themes. Results: Five hundred and fifteen research priorities from 51 PSPs were included in our analysis. The priorities together encompassed 20 of 21 HRCS health categories, the most common being 'generic health relevance' (22%), 'mental health' (18%) and 'musculoskeletal' (14%). We identified 89 overarching themes and subthemes, which we organised into a hierarchy with seven top‐level themes: quality of life, caregivers and families, causes and prevention, screening and diagnosis, treatment and management, services and systems and social influences and impacts. Conclusion: There are many overarching themes common to research priorities across multiple areas of health and care. To facilitate new research and research funding, we have developed an interactive tool to help researchers, funders and patients or service users to explore these priority topics. This is freely available to download online. Patient or Public Contribution: Patients or service users and carers were involved throughout the study, including deciding the aims, designing the study, analysing priorities to identify themes, interpreting and reporting the findings. [ABSTRACT FROM AUTHOR]

Introduction: Over a fifth of pregnant women are living with multiple long‐term health conditions, which is associated with increased risks of adverse outcomes for mothers and infants. While there are many examples of research exploring individuals' experiences and care pathways for pregnancy with a single health condition, evidence relating to multiple health conditions is limited. This study aimed to explore experiences and care of women with multiple long‐term health conditions around the time of pregnancy. Methods: Semistructured interviews were conducted between March 2022 and May 2023 with women with multiple long‐term health conditions who were at least 28 weeks pregnant or had had a baby in the last 2 years, and healthcare professionals with experience of caring for these women. Participants were recruited from across the United Kingdom. Data were analysed using thematic analysis. Results: Fifty‐seven women and 51 healthcare professionals participated. Five themes were identified. Women with long‐term health conditions and professionals recognised that it takes a team to avoid inconsistent care and communication, for example, medication management. Often, women were required to take a care navigation role to link up their healthcare providers. Women described mixed experiences regarding care for their multiple identities and the whole person. Postnatally, women and professionals recognised a downgrade in care, particularly for women's long‐term health conditions. Some professionals detailed the importance of engaging with women's knowledge, and recognising their own professional boundaries of expertise. Many participants described difficulties in providing informational continuity and subsequent impacts on care. Specifically, the setup of care systems made it difficult for everyone to access necessary information, especially when care involved multiple sites. Conclusion: Pregnant women with long‐term health conditions can experience a substantial burden of responsibility to maintain communication with their care team, often feeling vulnerable, patronised, and let down by a lack of acknowledgement of their expertise. These results will be used to inform the content of coproduction workshops aimed at developing a list of care recommendations for affected women. It will also inform future interventional studies aimed at improving outcomes for these women and their babies. Patient or Public Contribution: Our Patient and Public Involvement group were involved in the design of the study and the analysis and interpretation of the data, and a public study investigator was part of the author group. [ABSTRACT FROM AUTHOR]

Introduction: The mental health of young people (aged 16–25 years) is a growing public health concern in the United Kingdom due to the increasing numbers of young people experiencing mental health difficulties, with many not in contact with mental health services. To design services that meet the needs of all young people, a diversity of young people must be involved in mental health research, beyond being participants. This Delphi study aimed to identify different types of 'involvement' and to define and describe 'under‐representation' in young people's involvement in mental health research. Methods: Twenty‐seven experts in young people's mental health research completed a series of online questionnaires. The experts were academic researchers, patient and public involvement (PPI) professionals and young 'experts by experience'. Round 1 generated panellists' views on 'involvement' and 'under‐representation'. Round 2 summarised panellists' responses from Round 1 and sought consensus (minimum 70% agreement) in nine question areas. Round 3 validated the findings of the previous rounds. Results: Consensus was achieved in eight out of nine areas, resulting in a matrix (with definitions) of the different types of young people's involvement in mental health research, from being advisors to involvement ambassadors. The findings generated an agreed‐upon definition of under‐representation, an identification of when in the research process there is under‐representation and the characteristics of the young people who are under‐represented. Experts further agreed on demographic data that should be collected to improve reporting on involvement. Conclusions: This study adds to our understanding of involvement and under‐representation in the context of young people's mental health research through expert consensus. It provides a practical resource for researchers considering involving young people in the research process and suggests the data that should be collected to improve reporting on the diversity of the young people involved. Patient and Public Contribution: A research oversight group of five young people advised on this study. They contributed throughout the project—from endorsing the research question to commenting on the findings and dissemination. Two of the group reviewed all participant materials and piloted the initial questionnaire. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement and engagement (PPIE) have long been considered important to good research practice. There is growing, yet diverse, evidence in support of PPIE with children and young people (CYP). We must now understand the various approaches to involvement of CYP in research. Aims: This rapid umbrella review aimed to provide an overview of when, how and to what extent CYP are involved in the conduct of health research, as well as the reported benefits, challenges, and facilitators of involvement. Methods: We searched OVID Medline, Embase and PubMed. Published reviews were included if they reported meaningful involvement of CYP in the conduct of health research. Extracted data were synthesised using thematic analysis. Results: The 26 reviews included were predominately systematic and scoping reviews, published within the last decade, and originating from North America and the United Kingdom. CYPs were involved in all stages of research across the literature, most commonly during research design and data collection, and rarely during research funding or data sharing and access. Researchers mostly engaged CYP using focus groups, interviews, advisory panels, questionnaires, and to a lesser extent arts‐based approaches such as photovoice and drawing. Visual and active creative methods were more commonly used with children ≤12 years. The evidence showed a shared understanding of the benefits, challenges, and facilitators for involvement of CYP, such as time and resource commitment and building partnership. Conclusion: Overall, the review identified consistency in the range of methods and approaches used, and stages of research with which CYP are commonly involved. There is a need for more consistent reporting of PPIE in the literature, both in terminology and detail used. Furthermore, the impact of approaches to CYP involvement on research and community outcomes must be better evaluated. Patient/Public Contribution: This review forms part of broader research initiatives being led by the authors. Together, these projects aim to support embedding of child voices in research practice and to explore the desirability and suitability of Young Persons Advisory Groups within birth cohort studies. The findings from this review, alongside public and stakeholder consultation, will inform development of resources such as practice recommendations to guide future involvement of CYP in health research undertaken at the author's respective institutions. [ABSTRACT FROM AUTHOR]

Background: Supported self‐management can improve clinical and psychosocial outcomes in people with cancer; the considerations required to implement self‐management support (SMS) for people living with a lower‐grade glioma (LGG)—who often have complex support needs—are not known. We aimed to identify and understand these implementation considerations through the lens of normalisation process theory (NPT), from the perspectives of healthcare professionals (HCP) and people with LGG. Methods: We conducted semistructured interviews with HCPs who support adults with brain tumours (n = 25; 12 different healthcare professions), and people with LGG who had completed primary treatment (n = 28; male n = 16, mean age 54.6 years, mean time since diagnosis 8.7 years), from across the United Kingdom. Interviews were transcribed and inductive open coding conducted, before deductively mapping to constructs of NPT. We first mapped HCP data, then integrated data from people with LGG to explore alignment in experiences and perspectives. Results: We generated supporting evidence for all four NPT constructs and related subconstructs, namely: 'Coherence', 'Cognitive participation', 'Collective action' and 'Reflexive monitoring'. Data from HCPs and people with LGG clearly demonstrated that effective SMS constitutes a collective activity. Key implementation considerations included: ensuring awareness of, and access to, support; building strong HCP‐support recipient relationships; and careful inclusion of close family and friends. We identified pertinent challenges, such as identifying support needs (influenced by the extent to which those with LGG engage in help‐seeking), resistance to support (e.g., technology literacy), training for HCPs and HCP cooperation. Conclusions: This study demonstrates the collective nature of, and provides insight into the individual roles within, supported self‐management. We outline considerations to operationalise, sustain and appraise the implementation of SMS for people with LGG. Patient or Public Contribution: People with brain tumours, and informal caregivers, were involved in the development of information materials and topic guides to ensure accessibility and pertinence. They also had opportunities to comment on interview findings. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study was to uncover perspectives on the COVID‐19 pandemic and the responses implemented by the UK and Scottish Governments to help control the spread of infection. Such understanding could help to inform future responses to pandemics at individual, community and national levels. Method: Q methodology was used to elicit perspectives from people in England and Scotland with different experiences of the pandemic including public health officials, key workers, those on furlough, those who were unvaccinated or vaccinated to different levels, those who were 'shielding' because they were at higher risk and people with different scientific expertise. Participants rank‐ordered phrases about different aspects of COVID‐19 according to their viewpoint. Factor analysis was then conducted in conjunction with interview material from the same respondents. Results: A four‐factor solution was statistically supported and was interpretable alongside the qualitative accounts of participants loading on these factors. These four perspectives are titled Dangerous and Unaccountable Leadership, Fear and Anger at Policy and Public responses, Governing Through a Crisis and Injustices Exposed. Conclusion: The four perspectives demonstrate plurality and nuance in views on COVID‐19 and the associated policies and restrictions, going beyond a binary narrative that has been apparent in popular and social media. The four perspectives include some areas of common ground, as well as disagreement. We argue that understanding the detail of different perspectives might be used to build cohesion around policy initiatives in future. Patient or Public Contribution: The development of the statement set, which is rank‐ordered by participants in a Q study, and factor interpretations were informed by views of the general public. The statement set was initially developed using existing publicly available material based on members of the general public experiencing the pandemic first hand. It was then piloted with members of the public experiencing different challenges as a result of COVID‐19 and the subsequent lockdown and updated based on feedback. Finally, interpretations of the identified factors were presented publicly and edited according to their feedback. [ABSTRACT FROM AUTHOR]

Background: Healthcare and support workers play a pivotal role in delivering quality services and support to people seeking sanctuary who have experienced poor physical and mental health linked to previous trauma, relocation and loss of freedoms. However, they often encounter various challenges in their daily work, ranging from communication barriers to resource constraints. This qualitative study seeks to delve into the perspectives of healthcare and support workers' experience of workarounds, employed to overcome barriers to providing care. Aim: This study aims to describe healthcare providers', practitioners' and health and third sector support workers' views on barriers and workarounds to providing care for people seeking sanctuary, to inform policy and practice. Design: A qualitative study was carried out using semi‐structured telephone interviews. Setting: This study focused on primary, secondary, community and specialist National Health Service (NHS) support services for people seeking sanctuary in Wales, United Kingdom (2018). Method: We interviewed 32 healthcare providers, practitioners and support workers employed by primary care and third sector organisations. Our approach involved obtaining verbal informed consent before digitally recording and transcribing all interviews. To analyse the data, we used the Four Levels of Change for Improving Quality model as a guiding framework for interpretation. Results: Our study findings reveal that certain respondents expressed challenges in meeting the needs of people seeking sanctuary; notably, their experience of delivering care differed by care settings. Specifically, those involved in providing specialist NHS care believed that there was room for improvement. Mainstream primary, secondary and community health practitioners faced limitations due to resource constraints and lacked tailored information to address the unique circumstances and needs of sanctuary seekers. To address these gaps, workarounds emerged at both individual and local levels (team/departmental and organisational level). These included establishing informal communication channels between providers, fostering cross service collaboration to fill gaps and adapting existing services to enhance accessibility. Conclusion: Understanding healthcare providers', practitioners' and support workers' perspectives offers invaluable insights into ways to enhance healthcare delivery to sanctuary seekers. Acknowledging challenges and harnessing innovative workarounds can foster a more effective and compassionate service for this vulnerable population. Patient or Public Contribution: The HEAR study actively involved public contributors in the design, delivery and dissemination of the research. Two public contributors (S. M. and G. R.) who had personal experience of seeking asylum served as study co‐applicants. They played pivotal roles in shaping the research by participating in its development and securing funding. Alongside other co‐applicants, S. M. and G. R. formed the Research Management Group, overseeing study delivery. Their contributions extended to strategic decision‐making and specific feedback at critical junctures, including participant recruitment, data collection, analysis and reporting. Additionally, S. M. and G. R. were instrumental in recruiting and supporting a team of peer researchers, enhancing respondent participation among people seeking sanctuary. To facilitate effective public involvement, we provided named contacts for support (A. K. and R. F.), research training, honoraria, reimbursement of expenses and accessible information in line with best practice. [ABSTRACT FROM AUTHOR]

Introduction: This exploratory literature review seeks to examine the literature around commissioning processes in the co‐production of health and care services, focusing on two questions: How do health and care commissioning processes facilitate and/or pose barriers to co‐production in service design and delivery? What are the contextual factors that influence these processes? Method: A systematic search of three databases (Medline, Public Health and Social Policy and Practice) and a search platform (Web of Science) was conducted for the period 2008–2023. A total of 2675 records were retrieved. After deduplication, 1925 were screened at title and abstract level. Forty‐seven reports from 42 United Kingdom and Ireland studies were included in the review. A thematic synthesis of included studies was conducted in relation to the research questions. Results: The review identified one overarching theme across the synthesised literature: the complexity of the commissioning landscape. Three interconnected subthemes illuminate the contextual factors that influence this landscape: commissioners as leaders of co‐production; navigating relationships and the collective voice. Conclusion: Commissioning processes were commonly a barrier to the co‐production of health and care services. Though co‐production was an aspiration for many commissioners, the political and economic environment and service pressures meant that it was often not fully realised. More flexible funding models, longer‐term pilot projects, an increased emphasis in social value across the health and care system and building capacity for strong leadership in commissioning is needed. Patient and Public Contribution: Patients and the public did not contribute to this review as it was a small piece of work following on from a completed project, with no budget for public involvement. [ABSTRACT FROM AUTHOR]

Background: Receiving and accessing care after a diagnosis of dementia, both for the person and their carer, are fraught with inequalities. The aim of this public engagement activity was to co‐produce a board game about dementia inequalities to facilitate learning, dialogue and educate about different barriers, and facilitators, to diagnosis and care and to test the game's impact on dementia knowledge with the general public. Methods: Two virtual and two face‐to‐face workshops with people with dementia, unpaid carers, health and social care professionals and Third Sector representatives were held between October 2022 and June 2023. Virtual workshops involved discussions of inequalities and how a board game may feature inequalities. The first face‐to‐face workshop was split into the same activities, aided by outcomes from workshops 1 and 2. Workshop 4 attendees tested the prototype. The impact of the game on knowledge about dementia and inequalities was tested at a game play workshop in October 2023. Results: Forty stakeholders attended four workshops. Workshops provided step‐by‐step thoughts on how the game could be designed or modified. The final game, prototype tested in workshop 4, consists of a one‐sided, two‐half board depicting the prediagnosis process (left half) and postdiagnosis process (right half). Fifty‐two members of the general public participated in the game play workshop, which led to significant improvements in knowledge about dementia (p <.001) and inequalities (p <.001). Discussion: The game can be used to improve knowledge about dementia inequalities for health and social care professionals, carers, people living with dementia, decision makers and the general public. Patient or Public Contribution: This engagement activity fully involved people with dementia, unpaid carers, health and social care professionals and Third Sector representatives throughout, with two unpaid carers as public advisers on the team. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end‐of‐life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. Research Design and Objective: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. Findings: Thirty‐eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. Discussion and Implications: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. Patient or Public Contribution: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Many older people live with both multiple long‐term conditions and frailty; thus, they manage complex medicines regimens and are at heightened risk of the consequences of medicines errors. Research to enhance how people manage medicines has focused on adherence to regimens rather than on the wider skills necessary to safely manage medicines, and the older population living with frailty and managing multiple medicines at home has been under‐explored. This study, therefore, examines in depth how older people with mild to moderate frailty manage their polypharmacy regimens at home. Methods: Between June 2021 and February 2022, 32 patients aged 65 years or older with mild or moderate frailty and taking five or more medicines were recruited from 10 medical practices in the North of England, United Kingdom, and the CARE 75+ research cohort. Semi‐structured interviews were conducted face to face, by telephone or online. The interviews were recorded, transcribed verbatim and analysed using reflexive thematic analysis. Findings: Five themes were developed: (1) Managing many medicines is a skilled job I didn't apply for; (2) Medicines keep me going, but what happened to my life?; (3) Managing medicines in an unclear system; (4) Support with medicines that makes my work easier; and (5) My medicines are familiar to me—there is nothing else I need (or want) to know. While navigating fragmented care, patients were expected to fit new medicines routines into their lives and keep on top of their medicines supply. Sometimes, they felt let down by a system that created new obstacles instead of supporting their complex daily work. Conclusion: Frail older patients, who are at heightened risk of the impact of medicines errors, are expected to perform complex work to safely self‐manage multiple medicines at home. Such a workload needs to be acknowledged, and more needs to be done to prepare people in order to avoid harm from medicines. Patient and Public Involvement: An older person managing multiple medicines at home was a core member of the research team. An advisory group of older patients and family members advised the study and was involved in the first stages of data analysis. This influenced how data were coded and themes shaped. [ABSTRACT FROM AUTHOR]

Introduction: It is increasingly recognised by UK researchers and population health advocates that an important impetus to effective policy action to address health inequalities is activation of public dialogue about the social determinants of health and how inequalities might be addressed. The limited body of existing scholarship reaches varying conclusions on public preferences for responding to health inequalities but with consensus around the importance of tackling poverty. Young people's perspectives remain underexplored despite their increasingly visible role in activism across a range of policy issues and the potential impact of widening inequalities on their generation's health and wellbeing. Methods: Six groups of young people (39 in total) from two UK cities (Glasgow and Leeds) were engaged in online workshops to explore views on health inequalities and potential solutions. Inspired by calls to employ notions of utopia, artist–facilitators and researchers supported participants to explore the evidence, debating solutions and imagining a more desirable society, using visual and performance art. Drawing together data from discussions and creative outputs, we analysed participants' perspectives on addressing health inequalities across four domains: governance, environment, society/culture and economy. Findings: Proposals ranged from radical, whole‐systems change to support for policies currently being considered by governments across the United Kingdom. The consensus was built around embracing more participatory, collaborative governance; prioritising sustainability and access to greenspace; promoting inclusivity and eliminating discrimination and improving the circumstances of those on the lowest incomes. Levels of acceptable income inequality, and how best to address income inequality were more contested. Individual‐level interventions were rarely presented as viable options for addressing the social inequalities from which health differences emanate. Conclusion: Young people contributed wide‐ranging and visionary solutions to debates around addressing the enduring existence of health inequalities in the United Kingdom. Their reflections signal support for 'upstream' systemic change to achieve reductions in social inequalities and the health differences that flow from these. Public Contribution: An advisory group of young people informed the development of project plans. Participants shaped the direction of the project in terms of substantive focus and were responsible for the generation of creative project outputs aimed at influencing policymakers. [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]

Background: Parent carers of disabled children are at increased risk of physical and mental health problems. The Healthy Parent Carers (HPC) programme is a manualised peer‐led group‐based programme that aims to promote parent carer health and wellbeing. Previously, the programme had been delivered in person, with recruitment and delivery managed in a research context. This study explored implementation by two delivery partner organisations in the United Kingdom. Facilitator Training and Delivery Manuals were modified for online delivery using Zoom due to COVID‐19. Methods: The study methodology utilised the Replicating Effective Programs framework. A series of stakeholder workshops informed the development of the Implementation Logic Model and an Implementation Package. After delivering the programme, delivery partner organisations and facilitators participated in a workshop to discuss experiences of implementing the programme. A wider group of stakeholders, including commissioners, Parent Carer Forums and charity organisations representatives and researchers subsequently met to consider the sustainability and potential barriers to delivering the programme outside the research context. Results: This study explored implementation by two delivery partner organisations in the United Kingdom that were able to recruit facilitators, who we trained, and they recruited participants and delivered the programme to parent carers in different localities using Zoom. The co‐created Implementation Logic Model and Implementation Package were subsequently refined to enable the further roll‐out of the programme with other delivery partner organisations. Conclusions: This study provides insight and understanding of how the HPC programme can be implemented sustainably outside of the research context. Further research will evaluate the effectiveness of the programme and refine the implementation processes. Patient and Public Contribution: Parent carers, delivery partner organisation staff and service commissioners were consulted on the design, delivery and reporting of the research. [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]

Background: The COVID‐19 pandemic brought rapid and major changes to research, and those wishing to carry out Patient and Public Involvement (PPI) activities faced challenges, such as restrictions on movement and contact, illness, bereavement and risks to potential participants. Some researchers moved PPI to online settings during this time but remote consultations raise, as well as address, a number of challenges. It is important to learn from PPI undertaken in this period as face‐to‐face consultation may no longer be the dominant method for PPI. Methods: UK stay‐at‐home measures announced in March 2020 necessitated immediate revisions to the intended face‐to‐face methods of PPI consultation for the ESORT Study, which evaluated emergency surgery for patients with common acute conditions. PPI plans and methods were modified to all components being online. We describe and reflect on: initial plans and adaptation; recruitment; training and preparation; implementation, contextualisation and interpretation. Through first‐hand accounts we show how the PPI processes were developed, experienced and viewed by different partners in the process. Discussion and Conclusions: While concerns have been expressed about the possible limiting effects of forgoing face‐to‐face contact with PPI partners, we found important benefits from the altered dynamic of the online PPI environment. There were increased opportunities for participation which might encourage the involvement of a broader demographic, and unexpected benefits in that the online platform seemed to have a 'democratising' effect on the meetings, to the benefit of the PPI processes and outcomes. Other studies may however find that their particular research context raises particular challenges for the use of online methods, especially in relation to representation and inclusion, as new barriers to participation may be raised. It is important that methodological challenges are addressed, and researchers provide detailed examples of novel methods for discussion and empirical study. Patient and Public Contribution: We report a process which involved people with lived experience of emergency conditions and members of the public. A patient member was involved in the design and implementation, and two patients with lived experience contributed to the manuscript. [ABSTRACT FROM AUTHOR]

Introduction: It is increasingly accepted that young people need to be centrally involved in research on issues that affect them. The aim of this study was to explore young people's perceptions of the benefits for them of being involved in mental health research and the processes that enabled these benefits. Methods: Qualitative interviews were conducted by co‐researchers (young people with lived experience and/or interest in mental health) with 13 young people (aged 13–24 years) who had experience of being involved in mental health research when they were between 11 and 16 years of age. Reflective thematic analysis was used to identify important aspects of young people's experiences. Results: Four main themes were identified: (1) opportunity to have a meaningful impact, (2) opportunity to be part of a supportive community, (3) opportunity to learn and grow and (4) increasing opportunities for young people. Conclusion: This study highlights young people's experiences of being involved in mental health research and identifies ways in which researchers can ensure that involvement opportunities bring benefits to both the young people and the research. Patient or Public Contribution: This research was a response to issues raised by young people involved in research. The project was supported by co‐researchers throughout, including design, data collection, analysis and write‐up. [ABSTRACT FROM AUTHOR]

Introduction: Clinical trials must include diverse participants to ensure the wide applicability of results. However, people from ethnic minorities are included in clinical trials at rates lower than expected given their share of the population. Working with South Riverside Community Development Centre (SRCDC), Talking Trials used public engagement to foster discussions around the underrepresentation of those from minority ethnic communities in clinical trials and to identify and address concerns surrounding trial participation. Methods: We conducted three workshops with 13 co‐researchers from minority ethnic backgrounds. We explored perceptions and understanding of clinical trials alongside participatory art activities to help move away from verbocentric methods of communication. These artworks formed an exhibition that was presented to the community, prompting further discussions and engagement. Findings: Co‐production workshops were an effective tool to introduce the public to trial research. With little knowledge of clinical trials at the beginning of the process, our co‐researchers formed a cohesive group, sharing initial fears and mistrust towards trials. As conversations progressed these attitudes clearly shifted. Artwork produced during the workshops was incorporated into an exhibition. Quotes and creative pieces from the group were included to reflect the themes identified. Presenting the exhibition at Riverside Festival enabled further engagement with a wider diverse community. The focus on co‐production helped build a network of individuals new to research and keen to become involved further. Conclusion: Inclusive and democratic co‐production, enriched by participatory art practices, provided a powerful means of enabling our group to create new insights and foster new relationships. Projects like Talking Trials can diversify the research process itself—for example, four co‐researchers have commenced lay research partner roles on trial management groups and a lay advisory group is in development. Patient or Public Contribution: Three members of staff at SRCDC were on the project delivery group and involved in the initial project design, subsequently helping to connect us with members of the Riverside community to work as co‐researchers. Two of the SRCDC staff are co‐authors of this manuscript. The project had 13 public co‐researchers guiding the direction of this research and creating the artwork displayed in the art exhibition. [ABSTRACT FROM AUTHOR]

Introduction: There is a growing understanding of the benefits of patient and public involvement (PPI), and its evaluation, in research. An online version of the CUBE PPI evaluation framework has been developed. We sought to use the CUBE to evaluate the value of early PPI with two small healthcare companies during product development. Methods: Contributors were recruited online and had lived experience of either type 1 diabetes or obesity. Two 1‐h sessions were run with a company developing a smartphone application to manage diabetes (DEE‐EM): one with young people (YP; n = 5) and one with parents (n = 7). Two 1‐h sessions were run with a company developing a weight‐loss product, both with adults (n = 7 in each session). Sessions were facilitated by an independent University researcher and attended by company representatives, who presented their product. One facilitator led the evaluation of the session by giving a demonstration of the CUBE and asking simple questions in the YP session. Results: A high proportion of contributors completed the CUBE (80.5% DEE‐EM; 93% Oxford Medical Products). Responses were positive to all four CUBE dimensions (in italics). Contributors felt there were diverse ways to contribute to the sessions, and that they had a strong voice to add to the discussion. Balance was achieved regarding whose concerns (public or company) led the agenda, and contributors felt that both companies would make changes based on the discussion. The supportive attitude of both companies resulted in most contributors feeling comfortable participating in PPI sessions with the industry, while recognising the profit‐making aspect of their work. Conclusions: PPI with small healthcare companies is both feasible and worthwhile. The CUBE framework facilitated the evaluation of the interaction between experts in different knowledge spaces. We provide recommendations for future projects, including considerations of who should participate and the level of implicit endorsement of the product that participation implies. Patient or Public Contribution: People with lived experience of type 1 diabetes or obesity were invited to contribute to one of four PPI sessions, which they then evaluated. One contributor agreed to contribute to the analysis of the evaluation data and interpretation and preparation of the manuscript. [ABSTRACT FROM AUTHOR]

Background and Objective: There is a need for better integration of services across communities and sectors for people living with traumatic brain injury (TBI) to meet their complex needs. Building on insights gained from earlier pilot work, here we report the outcomes of a participatory workshop that sought to better understand the challenges, barriers and opportunities that currently exist within the care pathway for survivors of TBI. Methods: A diverse range of stakeholders from the acute and rehabilitation care pathway and the health and social care system were invited to participate in a 3‐h workshop. The participants worked in four mixed subgroups using practice development methodology, which promotes person‐centred, inclusive and participatory action. Results: Thematic analysis identified shared purposes and values that were used to produce a detailed implementation and impact framework for application at both the level of the care interface and the overarching integrated care system. A variety of enablers were identified that related to collective values and behaviours, case management, team leadership and integrated team working, workforce capability, evidence‐based practice and resourcing. The clinical, economic, cultural and social outcomes associated with these enablers were also identified, and included patient safety, independence and well‐being, reduced waiting times, re‐admission rates, staff retention and professional development. Conclusion: The co‐produced recommendations made within the implementation and impact framework described here provide a means by which the culture and delivery of health and social care services can be better tailored to meet the needs of people living with TBI. We believe that the recommendations will help shape the formation of new services as well as the development of existing ones. Patient or Public Contribution: Patient and public involvement have been established over a 10‐year history of relationship building through a joint forum and events involving three charities representing people with TBI, carers, family members, clinicians, service users, researchers and commissioners, culminating in a politically supported event that identified concerns about the needs of people following TBI. These relationships formed the foundation for the interactive workshop, the focus of this publication. [ABSTRACT FROM AUTHOR]

Background: Health and social care systems face difficulties in managing multimorbidity, disease burden and complex needs in long‐term conditions such as Parkinson's disease. Objective: This study aimed to develop a European understanding of how health and social care professionals can collaborate with stakeholders from different organizations and sectors to enhance the management of Parkinson's disease in a community setting by identifying the existing gaps in this process and how people with Parkinson's disease and their family carers could benefit from these partnerships. Methods: A mixed‐methods sequential study was conducted in Denmark, Norway, Spain and the United Kingdom. The findings from the qualitative phase are presented. Individual semistructured interviews were analysed using Braun's and Clarke's thematic analysis. A meta‐ethnography approach was used to analyse and synthesize cross‐national findings. Results: A total of 41 healthcare professionals and 39 stakeholders from different disciplines and sectors were interviewed in the four countries. The participants acknowledged a lack of awareness of available resources and poor communication between the different support systems in the management of Parkinson's disease. To promote multiagency collaborations, the participants highlighted the need to organize services along the Parkinson's disease journey, patient involvement and strategic involvement of carers in organizing resources and Parkinson's disease care pathways. According to the participants, the benefits from multiagency partnerships could lead to an enhanced continuity of care and specialized knowledge, mobilization of resources in the community, personalized support and improved access to services. Conclusions: Policymakers are called upon to create formal structures that facilitate multisectoral collaborations to promote an integrated system of care for the management of Parkinson's disease in the community. To address this challenge, we propose five strategies showing how organizations can work together to optimize the use of resources and enhance the management of Parkinson's disease throughout the illness trajectory. Patient or Public Contribution: Patient and Public Involvement groups made up of stakeholders, healthcare professionals, patients with Parkinson's disease and family carers participated in the design of the study, the development of the interview guides and the validation of the findings. [ABSTRACT FROM AUTHOR]

Introduction: As children with long‐term conditions (LTCs) mature, they are usually expected to assume responsibility from their parents for self‐management of their condition. Little is known about what supports families with this handover of responsibility, including the role of healthcare professionals (HCPs). This study aimed to explore what supports young people with chronic kidney disease (CKD) to assume self‐management responsibility and parents to relinquish control. Methods: A qualitative study, using a grounded theory approach was conducted. Individual and dyadic interviews and focus groups were carried out with 16 young people aged 13–17 years old with CKD, 13 parents, and 20 HCPs. Participants were recruited from two UK children's renal units. Findings: Building and maintaining trust, fostering positivity, learning from mistakes, forming partnerships and individualized support, facilitated the transfer of self‐management responsibility. However, HCPs' focus on developing partnerships with young people meant some parents felt excluded, highlighting uncertainty around whether support should be child‐ or family‐centred. Although tailored support was identified as critical, aspects of local service provision appeared to impact on HCPs' capacity to implement individualized approaches. Conclusion: This study has identified what supports the handover of responsibility, and, importantly, HCPs' current, and potential role in helping young people to assume responsibility for managing their LTC. Further research is needed to explore how HCPs' involvement balances child‐ and family‐centred care, and how HCPs can adopt personalized, strengths‐based approaches to help ensure the support that families receive is tailored to their individual needs. Patient or Public Contribution: Patient and public involvement was integrated throughout the study, with young adults with CKD and parents who had a child with CKD actively involved in the study's design and delivery. [ABSTRACT FROM AUTHOR]

Background: In October 2022, it was estimated 2.3 million people in the United Kingdom have self‐reported Long Covid (LC). Many people have reported not receiving adequate healthcare support. There is a lack of research which provides an in‐depth exploration of the barriers faced by people with LC in accessing healthcare support. It is important to understand these barriers to provide better support, care and advice for those experiencing LC. Objective: To understand the barriers faced in accessing primary, secondary and specialist healthcare support for people with LC. Design and Participation: 40 interviews were conducted with people living with LC in Bradford alongside 12 interviews with healthcare professionals (HCPs) providing LC support in Bradford healthcare settings. Interviews were analysed using reflexive thematic analysis. Results: People living with LC had a large degree of difficulty in accessing healthcare services for LC support. We categorized the healthcare access experiences of participants into five main types: (1) being unable to access primary care, (2) accessing primary care but receiving (perceived) inadequate support, (3) extreme persistence, (4) alternatives to mainstream health care and (5) positive experiences. There was a severe lack of access to specialist LC services. Ethnic minority participants faced a further barrier of mistrust and fear of services deterring them from accessing support. HCPs discussed systemic barriers to delivering services. Experiences were embedded in macrostructural issues further exacerbated by the pandemic. Conclusion: To better support people with LC, the barriers faced in accessing healthcare support must be addressed. Of significance, improvements to general practitioner access are required; especially as GPs are the first line of support for people living with LC. Patient and Public Involvement: A patient and public involvement group is engaged at regular intervals in the project. [ABSTRACT FROM AUTHOR]

Background: COVID‐19 vaccines have been the central pillar of the public health response to the pandemic, intended to enable us to 'live with Covid'. It is important to understand change and complexity of COVID‐19 vaccines attitudes and decisions to maximize uptake through an empathetic lens. Objective: To explore the factors that influenced people's COVID‐19 vaccines decisions and how their complex attitudes towards the vaccines had changed in an eventful year. Design and Participants: This is a follow‐up study that took place in Bradford, UK between October 2021 and January 2022, 1 year after the original study. In‐depth phone interviews were conducted with 12 (of the 20 originally interviewed) people from different ethnic groups and areas of Bradford. Reflexive thematic analysis was conducted. Results: Eleven of the 12 participants interviewed had received both doses of the COVID‐19 vaccine and most intended to have a booster dose. Participants described a variety of reasons why they had decided to have the vaccines, including the following: feeling at increased risk at work; protecting family and others in their communities; unrestricted travel and being influenced by the vaccine decisions of family, friends and colleagues. All participants discussed ongoing interaction with COVID‐19 misinformation and for some, this meant they were uneasy about their decision to have the vaccine. They described feeling overloaded by and disengaged from COVID‐19 information, which they often found contradictory and some felt mistrustful of the UK Government's motives and decisions during the pandemic. Conclusions: The majority of participants had managed to navigate an overwhelming amount of circulating COVID‐19 misinformation and chosen to have two or more COVID‐19 vaccines, even if they had been previously said they were unsure. However, these decisions were complicated, demonstrating the continuum of vaccine hesitancy and acceptance. This follow‐up study underlines that vaccine attitudes are changeable and contextual. Patient or Public Contribution: The original study was developed through a rapid community and stakeholder engagement process in 2020. Discussion with the Bradford Council Public Health team and the public through the Bradford COVID‐19 Community Insights Group was undertaken in 2021 to identify important priorities for this follow‐up study. [ABSTRACT FROM AUTHOR]

Introduction: Making a diagnosis of asthma can be challenging for clinicians and patients. A clinical decision support system (CDSS) for use in primary care including a patient‐facing mode, could change how information is shared between patients and healthcare professionals and improve the diagnostic process. Methods: Participants diagnosed with asthma within the last 5 years were recruited from general practices across four UK regions. In‐depth interviews were used to explore patient experiences relating to their asthma diagnosis and to understand how a CDSS could be used to improve the diagnostic process for patients. Interviews were audio recorded, transcribed verbatim and analysed using a thematic approach. Results: Seventeen participants (12 female) undertook interviews, including 14 individuals and 3 parents of children with asthma. Being diagnosed with asthma was generally considered an uncertain process. Participants felt a lack of consultation time and poor communication affected their understanding of asthma and what to expect. Had the nature of asthma and the steps required to make a diagnosis been explained more clearly, patients felt their understanding and engagement in asthma self‐management could have been improved. Participants considered that a CDSS could provide resources to support the diagnostic process, prompt dialogue, aid understanding and support shared decision‐making. Conclusion: Undergoing an asthma diagnosis was uncertain for patients if their ideas and concerns were not addressed by clinicians and were influenced by a lack of consultation time and limitations in communication. An asthma diagnosis CDSS could provide structure and an interface to prompt dialogue, provide visuals about asthma to aid understanding and encourage patient involvement. Patient and Public Contribution: Prespecified semistructured interview topic guides (young person and adult versions) were developed by the research team and piloted with members of the Asthma UK Centre for Applied Research Patient and Public Involvement (PPI) group. Findings were regularly discussed within the research group and with PPI colleagues to aid the interpretation of data. [ABSTRACT FROM AUTHOR]

Background: Psychological therapy assessments are a key point at which a person is accepted into a service or referred on. There is evidence of service users experiencing harm, dropping out of services and potentially experiencing poor outcomes because of inadequate assessment practices. Approaches to assessment tend to be developed by individual services, with a lack of research identifying what makes a good assessment. Methods: This survivor‐led study, based in England, aimed to generate guidelines for conducting trauma‐informed psychological therapy assessments. The study was guided by a Service User Advisory Group and a Clinician Advisory Group. The study was conducted in three key stages: (i) identifying, modelling and drafting guideline content (ii) modified Delphi study and (iii) guideline finalization. Stage 1 was informed by literature reviews, qualitative research, data workshops with Advisory Groups and an expert consultation. Fifty‐nine people with relevant experiences then participated in a single‐stage modified Delphi (Stage 2). The guidelines were finalized through an analysis of Delphi open comments and a final expert consultation (Stage 3). Results: The guidelines evolved through each stage of the process, and all items were deemed important by >90% of Delphi participants. The final trauma‐informed guidelines contain eight principles, including 'focus on relationships', 'from systems to people' and 'healing environments'. Conclusions: Experiential knowledge was key in generating the guidelines and conceptualizing content, with a consequent focus on areas, such as recognizing power differentials, understanding oppression as trauma and the relational aspects of assessments. Future research should focus on guideline implementation and investigate whether this impacts service user dropout, engagement with therapy, and outcomes. Patient or Public Contribution: This study is an example of survivor research, with several authors, including the study lead, identifying as survivors. We consider the ways in which our identities as survivor researchers impacted the study findings. [ABSTRACT FROM AUTHOR]

Background: Self‐management strategies improve asthma outcomes, although interventions for South Asian populations have been less effective than in White populations. Both self‐management and culture are dynamic, and factors such as acculturation and generation have not always been adequately reflected in existing cultural interventions. We aimed to explore the perspectives of Bangladeshi and Pakistani people in the United Kingdom, across multiple generations (first, second and third/fourth), on how they self‐manage their asthma, with a view to suggesting recommendations for cultural interventions. Methods: We purposively recruited Bangladeshi and Pakistani participants, with an active diagnosis of asthma from healthcare settings. Semi‐structured interviews in the participants' choice of language (English, Sylheti, Standard Bengali or Urdu) were conducted, and data were analysed thematically. Results: Twenty‐seven participants (13 Bangladeshi and 14 Pakistani) were interviewed. There were generational differences in self‐management, influenced by complex cultural processes experienced by South Asians as part of being an ethnic minority group. Individuals from the first generation used self‐management strategies congruent to traditional beliefs such as 'sweating' and often chose to travel to South Asian countries. Generations born and raised in the United Kingdom learnt and experimented with self‐management based on their fused identities and modified their approach depending on whether they were in familial or peer settings. Acculturative stress, which was typically higher in first generations who had migration‐related stressors, influenced the priority given to asthma self‐management throughout generations. The amount and type of available asthma information as well as social discussions within the community and with healthcare professionals also shaped asthma self‐management. Conclusions: Recognizing cultural diversity and its influence of asthma self‐management can help develop effective interventions tailored to the lives of South Asian people. Patient or Public Contribution: Patient and Public Involvement colleagues were consulted throughout to ensure that the study and its materials were fit for purpose. [ABSTRACT FROM AUTHOR]

Background: Around 2 million people have migrated from Central and Eastern Europe to the UK since 2004. The UK Central and Eastern European Community (UK‐CEE) are disproportionately exposed to the social determinants of poor physical and mental health. Their health and healthcare beliefs remain under‐researched, particularly regarding primary care. Objective: This review explores UK‐CEE community members' use and perceptions of UK general practice. Methods: A systematic search of nine bibliographic databases identified 2094 publications that fulfilled the search criteria. Grey literature searches identified 16 additional relevant publications. Screening by title and abstract identified 201 publications of relevance, decreasing to 65 after full‐text screening. Publications were critically appraised, with data extracted and coded. Thematic analysis using constant comparison allowed generation of higher‐order thematic constructs. Results: Full UK‐CEE national representation was achieved. Comparatively low levels of GP registration were described, with ability, desire and need to engage with GP services shaped by the interconnected nature of individual community members' cultural and sociodemographic factors. Difficulties overcoming access and in‐consultation barriers are common, with health expectations frequently unmet. Distrust and dissatisfaction with general practice often persist, promoting alternative health‐seeking approaches including transnational healthcare. Marginalized UK‐CEE community subgroups including Roma, trafficked and homeless individuals have particularly poor GP engagement and outcomes. Limited data on the impact of Brexit and COVID‐19 could be identified. Conclusions: Review findings demonstrate the need for codesigned approaches to remove barriers to engagement, culturally adapt and develop trust in GP care for UK‐CEE individuals. Community Involvement: Community members and stakeholders shaped the conceptualisation of the review question and validation of emergent themes. [ABSTRACT FROM AUTHOR]