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Introduction: We conducted a systematic review of qualitative evidence to improve understanding of the processes and outcomes of redress and reconciliation following a life‐changing event from the perspectives of individuals experiencing the event and their families. Methods: We searched six bibliographic databases for primary qualitative evidence exploring the views of individuals who have experienced a life‐changing event, and/or their family or carers, of redress or reconciliation processes. This was supplemented with targeted database searches, forward and backward citation chasing and searches of Google Scholar and relevant websites. Title and abstract and full‐text screening were undertaken independently by two reviewers. Data extraction and quality appraisal were conducted by one reviewer and checked by a second. We used a best‐fit framework synthesis approach, drawing upon procedural and restorative justice concepts. Findings: Fifty‐three studies (61 papers) were eligible for inclusion. Forty‐one studies (47 papers) were included in the synthesis, from which we identified four themes. Three themes 'Transparency', 'Person‐centered' and 'Trustworthy' represent the procedural elements required to support a fair and objective process. The fourth, 'Restorative justice' encapsulates how a fair process feels to those who have experienced a life‐changing event. This theme highlights the importance of an empathic relationship between the different parties involved in the redress‐reconciliation process and the significance of being able to engage in meaningful action. Conclusion: Our findings highlight the procedural aspects and context of redress‐reconciliation processes required to ensure that the process and outcomes are experienced as fair. These criteria may be applied to the processes used to investigate both recent and historical patient safety events. Public Contribution: One member of the public affiliated with the Exeter Policy Research Programme Evidence Review Facility helped develop the review protocol. Two people with experience of medically life‐changing events provided insight which corroborated our findings and identified important limitations of the evidence included in this review. [ABSTRACT FROM AUTHOR]

Objective: Although Ireland has one of the highest levels of well‐being in Europe, having a health condition has been found to have a direct negative impact. The aim of this study is to evaluate the current situation and the experiences of patients with epidermolysis bullosa (EB), a rare genetic skin disease, and their relatives living in Ireland, with a focus on burdens and helpful practices. Methods and Measures: In a mixed‐methods design, a series of standardised questionnaires were combined with open‐ended questions. Via an online survey, data from n = 59 EB patients and relatives of EB patients living in Ireland were collected. Results: EB affects both the patients and their relatives. Burdens were found in relation to the visibility of EB, the degree of severity, the current health status, reduced mobility, the financial impact of EB, the psychosocial impact and personal and social resources. The paper also analyses existing resources and highlights opportunities for support and needs of improvement. Conclusion: Quality of life with EB is influenced by somatic symptoms and the psychosocial burden. Individual helpful practices in dealing with this rare disease can be considered as mediators, but they need to be supported by structural and healthcare improvements. Patient or Public Contribution: The perspective of EB patients, their relatives and EB experts were taken into account in the development of the study design via two feedback loops with the EB patient organisations DEBRA Ireland and DEBRA Austria. The design was adapted accordingly. Additionally, by including open‐ended questions, patients and relatives could contribute their individual perspectives and add insights into their lives with EB that might not have been captured with the structured online survey alone. [ABSTRACT FROM AUTHOR]

Introduction: Responsive, integrated and sustainable health systems require that communities take an active role in service design and delivery. Much of the current literature focuses on provider‐led initiatives to gain community input, raising concerns about power imbalances inherent in invited forms of participation. This paper provides an alternate view, exploring how, in a period following reforms, community actors forge network alliances to (re)gain legitimacy and capacities to coproduce health services with system providers. Methods: A longitudinal case study traced the network‐building efforts over 3 years of a working group formed by citizens and community actors working with seniors, minorities, recent immigrants, youth and people with disabilities. The group came together over concerns about reforms that impacted access to health services and the ability of community groups to mediate access for vulnerable community residents. Data were collected from observation of the group's meetings and activities, documents circulated within and by the group, and semi‐directed interviews. The first stage of analysis used social network mapping to reveal the network development achieved by the working group; a second traced network maturation, based on actor–network theory. Results: Network mapping revealed how the working group mobilized existing links and created new links with health system actors to explore access issues. Problematization appeared as an especially important stage in network development in the context of reforms that disrupted existing collaborative relationships and introduced new structures and processes. Conclusion: Network‐building strategies enable community actors to enhance their capacity for coproduction. A key contribution lies in the creation of 'organizational infrastructure'. Patient or Public Contribution: The lead researcher was embedded over 3 years in the activities of the community groups and community residents. Several group members provided comments on an initial draft of this paper. To preserve the anonymity of the group, their names do not appear in the acknowledgements section. [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: Engaging with patients about their lived experience of health and illness and their experience within the healthcare system can help inform the provision of care, health policies and health research. In the context of health research, however, operationalizing the levels of patient engagement is not straightforward. We suggest that a key challenge to the routine inclusion of patients as partners in health research is a lack of tangible guidance regarding how this can be accomplished. Methods: In this article, we provide guidance on how to codesign and operationalize a concrete patient engagement plan for any health research project. Results: We illustrate a seven‐step approach using the example of a national clinical trial in Canada and provide a patient engagement planning template for use in any health research project. Conclusion: Such concrete guidance should improve the design and reporting of patient engagement in health research. Patient or Public Contribution: The De‐Implementing Wisely Research group is informed by a national 9‐member patient partner council (PPC). The research team includes three lead patient partners who are coinvestigators on the grant that funds the program of research. Members of the council advise on all aspects of the study design and implementation. The ideas presented in this paper were informed by regular communication and planning with the PPC; specific contributions of lead patient partner authors are outlined as follows: Brian Johnston, Susan Goold and Vanessa Francis are patient partners with a wide breadth of experience in the healthcare system and health research projects. The guidance in this article draws on their lived and professional expertise. All patient partner authors contributed to the planning of the manuscript, participated in meetings to develop content and provided critical manuscript edits and comments on drafts. [ABSTRACT FROM AUTHOR]

Background: The term peer researcher describes the role of a person who has similar characteristics and can identify with the participant group in a research study. This paper describes the methodological approach and experiences of older people who were peer researchers on a study that explored the lived experience of people with dementia who lived in technology‐enriched housing. Methods: Nine people responded to a public recruitment campaign through nongovernment organisations using multiple methods such as seniors' forums, development officers and social media. Mandatory training across 2 days was provided and seven peer researchers successfully completed the training. A total of 22 interviews were undertaken by the seven peer researchers. The data collected from the training feedback proforma (N = 7), interview debrief forms (N = 22) and final evaluation forms (N = 5) were analysed using content analysis and triangulated. Results: Five core themes emerged from the data using a content analysis approach to examine the peer researchers' experience: (1) skill development; (2) recognition of competencies; (3) connection; (4) supplementary information; and (5) the triad dynamic. Conclusions: Considerations to enhance the peer researcher experience emerged including enhanced communication training, consideration of the optimum number of peer researchers to balance workload and identification of the characteristics that enable people to connect as peer researchers. Future research should consider the impact that experiential skill development has on the data collected. Public Contribution: Older people conducted qualitative interviews as peer researchers with people living with dementia to cocreate knowledge. [ABSTRACT FROM AUTHOR]

Background: The coronavirus disease (COVID‐19) pandemic has had far‐reaching effects upon lives, healthcare systems and society. Some who had an apparently 'mild' COVID‐19 infection continue to suffer from persistent symptoms, including chest pain, breathlessness, fatigue, cognitive impairment, paraesthesia, muscle and joint pains. This has been labelled 'long COVID'. This paper reports the experiences of doctors with long COVID. Methods: A qualitative study; interviews with doctors experiencing persistent symptoms were conducted by telephone or video call. Interviews were transcribed and analysis conducted using an inductive and thematic approach. Results: Thirteen doctors participated. The following themes are reported: making sense of symptoms, feeling let down, using medical knowledge and connections, wanting to help and be helped, combining patient and professional identity. Experiencing long COVID can be transformative: many expressed hope that good would come of their experiences. Distress related to feelings of being 'let down' and the hard work of trying to access care. Participants highlighted that they felt better able to care for, and empathize with, patients with chronic conditions, particularly where symptoms are unexplained. Conclusions: The study adds to the literature on the experiences of doctors as patients, in particular where evidence is emerging and the patient has to take the lead in finding solutions to their problems and accessing their own care. Patient and Public contribution: The study was developed with experts by experience (including co‐authors HA and TAB) who contributed to the protocol and ethics application, and commented on analysis and implications. All participants were given the opportunity to comment on findings. [ABSTRACT FROM AUTHOR]

Background: A new diagnosis of complex post‐traumatic stress disorder, CPTSD, has been agreed by the World Health Organization, WHO, and evidence is needed for what psychological treatment might be effective, particularly from those with experience of the disorder. We used a novel participatory approach to explore patient views and simultaneously studied the impact on the patient researchers of the research process itself. In this paper, we report on the latter section of the study how the involvement in research of patients with CPTSD affected their mental health. Symptoms of CPTSD may include emotional dysregulation, feelings of self‐worthlessness and difficulties in relationships. Objective: The aim of this study section was to explore whether patients' mental health could be promoted through empowering them to participate in research on CPTSD. Design: The study had a qualitative, participatory design. The clinician who led the research (first author) held group meetings with patient researchers to explore the impact of the research process. The clinician also kept notes on the process in a reflective log. Setting and participants: Six patient researchers participated in research with other patients with lived experience of CPTSD in an NHS outpatient unit in a London hospital. Intervention studied: The research process itself was analysed in group meetings with researchers which the clinician recorded and transcribed. Findings: Participation in research may promote increased self‐confidence and social inclusion for those with CPTSD. Conclusion: Involvement in research may be seen as an empowering intervention because patients felt it contributed to recovery. [ABSTRACT FROM AUTHOR]

Current orthodoxy suggests that patients need to be provided with full information about their care and that treatment options should be discussed with patients and family members. This imperative is especially challenging when there is a lack of consensus about treatment effectiveness and equivocacy over different types of interventions. In the case of prostate cancer, evidence is contested as to the efficacy of different treatments. Thus, involving patients and their family members in treatment choices is complex and little is known about how patients and their partners process these decisions when there is uncertainty about different outcomes. This paper has reviewed the literature on the way couples approach such decision making in relation to treatment for prostate cancer. A meta-ethnographic synthesis of published qualitative papers that focused on the influences on patients', and their partners' treatment decision making for prostate cancer, was conducted in order to identify and understand barriers and facilitators which impact on this process. Our synthesis indicates that the couples' relationship 'dynamic' provides a contextual background against which treatment decisions are negotiated and made. We propose that the findings from this synthesis can enhance the potential for shared decision making for patients, and their partners, when facing a treatment decision for prostate cancer. By understanding the couples' relationship dynamic pre-diagnosis, clinicians may be able to tailor the communication and information provision to both patients and their partners, providing a personalized approach to treatment decision making. [ABSTRACT FROM AUTHOR]

Background: Nonmotor symptoms (NMSs) are frequently experienced by people with Parkinson's disease (PD) and are often perceived as their most bothersome symptoms. However, these remain poorly understood with suboptimal clinical management. These unmet needs are an important determinant of health‐related quality of life (QoL) in PD. Objective: The aim of this study was to gain insights into the experience of living with the NMS of PD in real‐time using participatory action methodology. Method: Using the photovoice method, 14 people with PD took photographs to document their experiences of living with the NMS of PD. They composed corresponding written narratives to capture the impact of NMS on their daily activities and QoL. In total, 152 photographs and corresponding narratives were analysed using thematic analysis with an inductive approach. Results: Four interrelated themes were identified. Emotional well‐being and sense of self encompassed a process of adjustment to living with PD. Engaging in valued activities, adopting a positive mindset and utilising coping strategies were thought to enhance confidence and self‐esteem. Social support and societal awareness highlighted the importance of supportive relationships and socialising to aid participation and avoid isolation. Barriers to social engagement included the unpredictability of NMS and nonvisible NMS being neglected or misunderstood. Conclusion: Findings demonstrated the far‐reaching impact of nonmotor aspects of PD on emotional, occupational and social dimensions. These needs could be addressed through person‐centred and comprehensive approaches to care. Patient or Public Contribution: This study utilised a participatory research approach allowing participants to choose the subjects that mattered to them and how to present their results. Additionally, a group workshop was held with people with PD, their family members and healthcare professionals to guide theme development. [ABSTRACT FROM AUTHOR]

Introduction: Hearing loss is a chronic health condition that rises sharply with age. The way people respond to and cope with health conditions is influenced by their capacity to perform illness and treatment‐related work. The aim was to explore the cumulative burdens of living with hearing loss and the resources mobilised to ease the burdens. Methods: A qualitative design was used with semi‐structured interviews (online or in‐person) with participants recruited through audiology services and nonclinical services, such as lip‐reading classes. Forty‐six participants with hearing loss aged between 16 and 96 years were interviewed. An abductive approach, informed by May et al.'s burden of treatment theory, was used to analyse the data. Results: The illness burden involved participants working to make sense of their hearing loss, engaging in emotional work in response to changes in sound, social interactions and identity and coping with the daily frustrations required to communicate with others. Abandonment and uncertainty characterised the treatment burden; participants engaged in emotional work to adjust to hearing technology and deal with the uncertainty of how their hearing might progress. To ameliorate the burdens, participants drew on internal resources (psychological, health literacy, cognitive) and external resources (social support, financial, information, technology). Conclusions: The workload of hearing loss appears largely devolved to the patient and is not always visible. Our work indicates the need to widen approaches in audiological care through the implementation of lifeworld‐led care, family‐centred care and peer support to build support for those with hearing loss. Patient or Public Contribution: We developed the project in consultation with members of the public who have lived experience of hearing loss recruited through Aston University and volunteer links to audiology services. We also consulted people more likely to be affected by hearing loss adults including adults with learning disabilities, older adults in residential care and people from South Asia (Bangladeshi, Indian and Pakistani communities). These individuals commented on the study aims, interview schedule and participant recruitment practices. One of our co‐authors (expert by experience) contributed to the development and interpretation of themes and preparation of the final manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Recruitment and long‐term retention of adolescent participants in longitudinal research are challenging and may be especially so in studies involving remote measurement and biosampling components. The ability to effectively recruit and retain participants can be supported by the use of specific evidence‐based engagement strategies that are built in from the earliest stages. Methods: Informed by a review of the evidence on effective engagement strategies and consultations with adolescents (via two Young Person Advisory Groups [YPAGs]; ages 11–13 and 14–17), the current protocol describes the planned participant engagement strategy for the Mental Health in the Moment Study: a multimodal measurement burst study of adolescent mental health across ages 11–19. Results: The protocol incorporates engagement strategies in four key domains: consultations/co‐design with the target population, incentives, relationship‐building and burden/barrier reduction. In addition to describing general engagement strategies in longitudinal studies, we also discuss specific concerns regarding engagement in data collection methods such as biosampling and ecological momentary assessment where a paucity of evidence exists. Conclusion: Engagement strategies for adolescent mental health studies should be based on existing evidence and consultations with adolescents. We present our approach in developing the planned engagement strategies and also discuss limitations and future directions in engaging adolescents in longitudinal research. Patient or Public Contribution: The study design for this project places a strong emphasis on the active engagement of adolescents throughout its development. Specifically, the feedback and suggestions provided by the YPAGs have been instrumental in refining our strategies for maximising the recruitment and retention of participants. [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]

Objective: The paper characterizes outpatient communication in a major cancer hospital in southern China with regard to the structure, style and focus of doctor–patient communication. Method: Fifty‐one encounters between doctors and patients were recorded in the outpatient department of the cancer hospital and analysed inductively to identify patterns of doctor–patient outpatient communication. Results: Outpatient communication in the cancer hospital is characterized by structuralized conversation, doctor domination of the conversation and a focus on technology during communication. These characteristics suggest an extreme inequality of power between Chinese doctors and patients at the individual level. They are also shaped by the institutional environment of Chinese hospitals. Discussion: Measures should be taken at both the interpersonal and institutional level to improve doctor–patient communication. At the micro‐interpersonal level, public education and professional skills training are needed to improve communication and promote mutual understanding between patients and doctors. At the macro‐institutional level, changes are needed in terms of transforming the structural factors that shape doctor–patient communication. Conclusions: Structuralized conversation, doctor domination of the conversation and a focus on technology during outpatient encounters present challenges to effective doctor–patient communication. These patterns are shaped by the institutional environment of Chinese hospitals and suggest the extreme power imbalance between Chinese doctors and patients. [ABSTRACT FROM AUTHOR]

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

Background: Cocreation has the potential to engage people with lived and living experiences in the design and evaluation of health and social services. However, guidance is needed to better include people from equity‐deserving groups (EDGs), who are more likely to face barriers to participation, experience ongoing or historical harm, and benefit from accessible methods of engagement. Objective: The aim of this international forum (CoPro2022) was to advance a collective vision for equity‐based cocreation. Design: A participatory process of engagement in experiential colearning and arts‐based creative and reflective dialogue. Visual prototypes were created and synthesised to generate a collective vision for inclusive equity‐based cocreation. Setting and Participants: The Forum was held at the Gathering Place by the Grand River in Ohsweken, Ontario, Canada. A total of 48 participants attended the forum. They were purposely invited and have intersecting positionalities (21 academic experts, six experience experts, 10 trainees, and 11 members of EDGs) from nine countries (Bangladesh, Botswana, Canada, England, Italy, Norway, Scotland, Singapore, Sweden). CoPro2022 Activities: CoPro2022 was an immersive experience hosted on Indigenous land that encouraged continuous participant reflection on their own worldviews and those of others as participants openly discussed the challenges and opportunities with engaging EDGs in cocreation activities. Visual prototypes and descriptions created in small groups were informed by participants' reflections on the panel presentations at the Forum and their own experiences with equity‐based cocreation. Following the event, the authorship team inductively coded themes from the prototype descriptions and met to discuss the cross‐cutting themes. These informed the design of an illustrated collective vision for Equity Based Co‐Creation (EqCC). Results: Six prototypes were cocreated by each small group to illustrate their vision for EqCC. Within these, four cross‐cutting themes were identified: (i) go to where people are, (ii) nurture relationships and creativity, (iii) reflect, replenish and grow, (iv) and promote thriving and transformation. These four themes are captured in the Collective EqCC Vision to guide a new era of inclusive excellence in cocreation activities. Patient or Public Contribution: Service users, caregivers, and people with lived experience were involved in leading the design of the CoPro2022 and co‐led the event. This included activities at the event such as presenting, facilitating small and large group discussion, leading art‐based activities, and reflecting with the team on the lessons learned. People with lived experience were involved in the analysis and knowledge sharing from this event. Several members of the research team (students and researchers) also identified as members of EDGs and were invited to draw from their personal and academic knowledge. [ABSTRACT FROM AUTHOR]

Context: Engaging with peers is gaining increasing interest from healthcare systems in numerous countries. Peers are people who offer support by drawing on lived experiences of significant challenges or 'insider' knowledge of communities. Growing evidence suggests that peers can serve as a bridge between underserved communities and care providers across sectors, through their ability to build trust and relationships. Peer support is thus seen as an innovative way to address core issues of formal healthcare, particularly fragmentation of care and health inequalities. The wide body of approaches, goals and models of peer support speaks volumes of such interest. Navigating the various labels used to name peers, however, can be daunting. Similar terms often hide critical differences. Objectives/Background: This article seeks to disentangle the conceptual multiplicity of peer support, presenting a conceptual map based on a 3‐year knowledge synthesis project involving peers and programme stakeholders in Canada, and international scientific and grey literature. Synthesis/Main Results: The map introduces six key questions to navigate and situate peer support approaches according to peers' roles, pathways and settings of practice, regardless of the terms used to label them. As a tool, it offers a broad overview of the different ways peers contribute to integrating health and community care. Discussion: We conclude by discussing the map's potential and limitations to establish a common language and bridge models, in support of knowledge exchange among practitioners, policymakers and researchers. Patient or Public Contribution: Our team includes one experienced peer support worker. She contributed to the design of the conceptual map and the production of the manuscript. More than 10 peers working across Canada were also involved during research meetings to validate and refine the conceptual map. [ABSTRACT FROM AUTHOR]

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

Introduction: Involving people with lived experience is fundamental to healthcare development and delivery. This is especially true for inflammatory bowel disease (IBD) services, where holistic and personalised models of care are becoming increasingly important. There is, however, a significant lack of representation of underserved and diverse groups in IBD research, and there are significant barriers to healthcare access and utilisation among minority groups in IBD. IBD centres need to be aware of these experiences to address barriers via service changes, improve interactions with local communities and promote meaningful engagement for improved health outcomes. Methods: A pragmatic community‐based approach was taken to engage with leaders and members of underserved groups across 11 workshops representing Roma, Afro‐Caribbean, people of African descent and the wider black, Asian and minority ethnic (BAME) communities, Muslim women, refugee community members, deprived areas of South Yorkshire, LGBTQ+ and deaf populations. Thematic analysis of field notes identified patterns of attention across the community groups and where improvements to services were most frequently suggested. Results: Findings demonstrated several barriers experienced to healthcare access and utilisation, including language accessibility, staff attitudes and awareness, mental health and stigma, continuity of support, and practical factors such as ease of service use and safe spaces. These barriers acted as a lever to co‐producing service changes that are responsive to the health and social care needs of these groups. Conclusions: Engaging with people from a range of communities is imperative for ensuring that service improvements in IBD are accessible and representative of individual needs and values. Patient or Public Contribution: Local community leaders and members of community groups actively participated in the co‐design and development of improvements to the IBD service for a local hospital. Their contributions further informed a pilot process for quality improvement programmes in IBD centres. [ABSTRACT FROM AUTHOR]

Background: An often‐hidden element in healthcare students' education is the pedagogy of public involvement, yet public participation can result in deep learning for students with positive impacts on the public who participate. Objective: This article aimed to synthesize published literature reviews that described the impact of public participation in healthcare students' education. Search Strategy: We searched MEDLINE, EMBASE, ERIC, PsychINFO, CINAHL, PubMed, JBI Database of Systematic Reviews and Implementation Reports, the Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects and the PROSPERO register for literature reviews on public participation in healthcare students' education. Inclusion Criteria: Reviews published in the last 10 years were included if they described patient or public participation in healthcare students' education and reported the impacts on students, the public, curricula or healthcare systems. Data Extraction and Synthesis: Data were extracted using a predesigned data extraction form and narratively synthesized. Main Results: Twenty reviews met our inclusion criteria reporting on outcomes related to students, the public, curriculum and future professional practice. Discussion and Conclusion: Our findings raise awareness of the benefits and challenges of public participation in healthcare students' education and may inform future research exploring how public participation can best be utilized in higher education. Patient or Public Contribution: This review was inspired by conversations with public healthcare consumers who saw value in public participation in healthcare students' education. Studies included involved public participants, providing a deeper understanding of the impacts of public participation in healthcare students' education. [ABSTRACT FROM AUTHOR]

Background: Our knowledge of the broader impacts of antidepressant withdrawal, beyond physical side effects, is limited. Further research is needed to investigate the lived experiences of withdrawal, to aid clinicians on how to guide patients through the process. Aim: To explore antidepressant users' experiences and views on the withdrawal process and how it affected their quality of life across multiple life domains. Design and Setting: We conducted in‐depth qualitative interviews with 20 individuals from the community who had attempted to withdraw from Serotonin Reuptake Inhibitor antidepressants in the past year. Method: Semi‐structured interviews were conducted online. A topic guide was used to ensure consistency across interviews. The interviews were audio‐recorded and transcribed verbatim and analysed using inductive reflexive thematic analysis. Results: Five themes were generated. The first highlighted the challenges of managing the release from emotional blunting and cognitive suppression following antidepressant discontinuation. The second related to the negative impact of withdrawal on close relationships and social interactions. The third showed that concurrent with negative physical symptoms, there was a positive impact on health (exercise was reported by some as a coping mechanism). The fourth theme focused on support from GPs and families, emphasising the importance of mental health literacy in others. The final theme underscored the importance of gradual and flexible tapering in enabling a manageable withdrawal experience, and the consideration of timing. Conclusion: The lived experience of withdrawal significantly impacts individuals' well‐being. Participants emphasised that withdrawal is not just about physical side effects but also affects their emotional, cognitive, and social functioning. Patient and Public Involvement (PPI): Eight people attended individual online meetings to share their experiences of antidepressant withdrawal to help inform the study design and recruitment strategy. Insights from these meetings informed the development of the topic guide. Questions about GP involvement, family relationships, and mood and thinking changes were included based on this PPI work. This ensured the inclusion of topics important to antidepressant users and facilitated the researcher's questioning during the interviews. [ABSTRACT FROM AUTHOR]

Background: Recruitment of cancer clinical trial (CCT) participants, especially participants representing the diversity of the US population, is necessary to create successful medications and a continual challenge. These challenges are amplified in Phase I cancer trials that focus on evaluating the safety of new treatments and are the gateway to treatment development. In preparation for recruitment to a Phase I recurrent head and neck cancer (HNC) trial, we assessed perceived barriers to participation or referral and suggestions for recruitment among people with HNC and community physicians (oncologist, otolaryngologist or surgeon). Methods: Between December 2020 and February 2022, we conducted a qualitative needs assessment via semistructured interviews with a race and ethnicity‐stratified sample of people with HNC (n = 30: 12 non‐Hispanic White, 9 non‐Hispanic African American, 8 Hispanic and 1 non‐Hispanic Pacific Islander) and community physicians (n = 16) within the University of Florida Health Cancer Center catchment area. Interviews were analyzed using a qualitative content analysis approach to describe perspectives and identify relevant themes. Results: People with HNC reported thematic barriers included: concerns about side effects, safety and efficacy; lack of knowledge and systemic and environmental obstacles. Physicians identified thematic barriers of limited physician knowledge; clinic and physician barriers and structural barriers. People with HNC and physicians recommended themes included: improved patient education, dissemination of trial information and interpersonal communication between community physicians and CCT staff. Conclusions: The themes identified by people with HNC and community physicians are consistent with research efforts and recommendations on how to increase the participation of people from minoritized populations in CCTs. This community needs assessment provides direction on the selection of strategies to increase CCT participation and referral. Patient or Public Contribution: This study focused on people with HNC and community physicians' lived experience and their interpretations of how they would consider a future Phase I clinical trial. In addition to our qualitative data reflecting community voices, a community member reviewed the draft interview guide before data collection and both people with HNC and physicians aided interpretation of the findings. [ABSTRACT FROM AUTHOR]

Introduction: Advancements in evaluating the impact of participatory health research (PHR) have been made through comprehensive models like the community‐based participatory research (CBPR) conceptual model, which provides a useful framework for exploring how context and partnership processes can influence health research design and interventions. However, challenges in operationalising aspects of the model limit our understanding and evaluation of the PHR process. Trust is frequently identified as an important component of the CBPR model, which supports the development of key partnership outcomes, such as partnership synergy. However, trust continues to be limited to a binary view (as present or absent), which is problematic given its inherently dynamic and temporal nature. Study Aim: The aim of this qualitative study is to understand the evolution of trust in the national public and patient involvement (PPI) network in Ireland. Setting and Participants: Participants from the PPI network (n = 15/21) completed a semistructured interview discussing the evolution of trust by reviewing four social network maps derived from a previous longitudinal study. Analysis: Following Braun and Clarke, we used reflexive thematic analysis, to iteratively develop, analyse and interpret our mediated reflection of the data. Results: Participants described the evolution of trust as a function of three contextual factors: (1) the set‐up and organisation of the network, (2) how people work together and (3) reflection on the process and outcomes. Their descriptions across these themes seemed to vary depending on partnership type with National Partners and Site Leads having more opportunities to demonstrate trust (e.g., via leadership roles or more resources), compared to Local. Thus, visibility and the opportunity to be visible, depending on the set‐up and organisation of the network and how people work together, seemingly play an important role in the evolution of trust over time. Based on these findings, we provide important questions for reflection across themes that could be considered for future PHR partnerships. Discussion: Given that the opportunity and visibility to build and maintain trust over time may not be equally available to all partners, it is important to find ways to invest in and commit to equitable relationships as the key to the success (i.e., longevity) of partnerships. We reflect on/offer important implications for those engaging in PHR partnerships and those who fund such research. Patient or Public Contribution: A Research Advisory Group comprising four research partners (representing academic, service and community organisations) from the PPI Ignite Network provided input and approval for the research objectives of this study as well as previously published work informing this study. Informal consultation occurred with members of this group to discuss findings from this study, assisting with the way findings are presented and described, to be accessible for diverse audiences. Two Research Advisory Group members were involved in the interpretation of the results, and one is a co‐author of this manuscript (Zoe Hughes). [ABSTRACT FROM AUTHOR]

Introduction: People with poststroke acquired brain injury (ABI) face a complex and often troubled identity reconstruction journey. The literature is rich with studies related to the psychological and neuropsychological components involved in rehabilitation, but it is lacking with respect to the investigation of the existential dimensions and the challenges associated with finding new senses and meanings for one's identity and future perspectives, body and interpersonal relationships. Methods: The aim of this study is to investigate the narrative processes of identity reconstruction after brain damage. Through a qualitative approach, 30 autobiographical narratives about self, body and the relationships with others were collected and analyzed. Semistructured interviews were used for the data collection. Narrative and positioning analysis were applied. Results: Four main positionings emerged: sanctioning a radical break with one's previous life; assuming a sense of salvation and compulsory as well as irreversible adaptation to the limitations associated with one's condition; feeling different and disabled; and considering new possibilities and active constructions of self‐being in relationship with others. These results underline the narrative processes of construction of the injury and the identity and delineate possible resources and instruments to improve the clinical practice for health practitioners. They are also valuable for other professionals who deal with neurological services and rehabilitation, such as psychological counselling and support for persons who have experienced ABI and their families. Patient or Public Contribution: This work resulted from a close collaboration between two universities and a hospital neurological rehabilitation department in the Veneto Region (Northern Italy). Three associations of people with stroke and their families living in the same area contributed to designing the research on the basis of the needs expressed by their members with the aim to identify strategies and devices to be implemented in the public service to improve the care pathway. They also participated in the interpretation of the data. [ABSTRACT FROM AUTHOR]

Background: Actors portraying simulated patients are widely used in communication skills training in healthcare, but debates persist over the authenticity of these interactions. However, healthcare professionals value simulation‐based training because of the opportunity to think and react in real time, which alternatives cannot provide. Objective: To describe a method for the use of simulation which maximises authenticity by grounding training in real, observed, patterns of patient communication. Design: Naturally occurring care interactions were video recorded and analysed using conversation analysis (CA) to identify communication patterns. We focused on sites of recurring interactional trouble as areas for training, and identified more and less effective ways of dealing with these. We used the CA findings to train actors portraying simulated patients, based on the observed interactional patterns. Settings and Participants: Patients living with dementia and healthcare practitioners (HCPs) on two acute healthcare of the elderly wards in the English East Midlands. Outcome Measures: One month later HCPs reported using the skills learned in clinical practice. Masked‐ratings of before and after simulated patient encounters confirmed these self‐reports in relation to one key area of training. Results: The Conversation Analysis Based Simulation (CABS) method used in this setting showed positive results across a range of quantitative and qualitative outcome measures. What is significant for the transferability of the method is that qualitative feedback from trainees highlighted the ability of the method to not only illuminate their existing effective practices, but to understand why these were effective and be able to articulate them to others. Discussion/Conclusion: While the CABS method was piloted in the dementia care setting described here, it has potential applicability across healthcare settings where simulated consultations are used in communication skills training. Grounding simulated interaction in the observed communication patterns of real patients is an important means of maximising authenticity. Patient and Public Contribution: The VideOing to Improve dementia Communication Education (VOICE) intervention which piloted the CABS method was developed by a multidisciplinary team, including three carers of people with dementia. People living with dementia were involved in the rating of the before and after video simulation assessments. [ABSTRACT FROM AUTHOR]

Background: Co‐produced research holds enormous value within the health sciences. Yet, there can be a heavy focus on what research participants think, do and know; while the researcher's responsibility to explore and re/work their own knowledge or praxis tends to escape from view. This is reflected in the limited use of co‐production to explore broad structural distributions of health and risk(s). We argue this missed opportunity has the potential to unfold as what Berlant calls a 'cruel optimism', where something desirable becomes an obstacle to flourishing and/or produces harm. We explore challenges to involving lay populations meaningfully in health research amidst a neoliberal cultural landscape that tends to responsibilise people with problems they cannot solve. Methods and Findings: Drawing together principles from hermeneutic and feminist philosophy, we develop a novel methodology for co‐producing research about determinants of health and health risk (using a case study of alcohol consumption as an example) that centres on what researchers do, know and think during research: Women's Thought Collectives. Discussion: Keeping the constructed nature of social systems—because they shape ideas of value, expertise and knowledge—in view during co‐produced research illuminates the potential for cruel optimisms within it. Such reflexive awareness carves out starting points for researchers to engage with how social hierarchies might (tacitly) operate during the co‐production of knowledge. Our work has broad utility for diverse population groups and provides important considerations around the roles and responsibilities for reflexive co‐production of knowledge at all levels of health systems. Patient or Public Contribution: The development of these ideas was sparked by working with lay participants during the Women's Thought Collectives for Kristen Foley's doctoral research 2021–2023, but undertaken without their direct involvement—in accordance with the responsibilities of researchers in the reflexive co‐production of knowledge. Forthcoming publications will address the outcomes and processes of this work. [ABSTRACT FROM AUTHOR]

Aim This paper focuses on stakeholders' active involvement at key stages of the research as members of a Stakeholder Action Group (SAG), particularly in the context of lay stakeholder involvement. Some challenges that can arise and wider issues (e.g. empowerment, the impact of user involvement) are identified and explored within the literature on service user involvement in health care research, reflecting on the implications for researchers. Background In the DEPICTED study, lay and professional stakeholders were actively involved in developing a complex research intervention. Lay stakeholders comprised teenage and adult patients with diabetes, parents and patient organization representatives. Professional stakeholders were from a range of disciplines. Methods Three 1-day research meetings were attended by 13-17 lay stakeholders and 10-11 professional stakeholders (plus researchers). The SAG was responsible for reviewing evidence, advising on developing ideas for the research intervention and guiding plans for evaluation of the intervention in a subsequent trial. Formal evaluations were completed by stakeholders following each SAG meeting. Results Throughout the first (developmental) stage of this two-stage study, lay and professional stakeholders participated or were actively involved in activities that provided data to inform the research intervention. Lay stakeholders identified the need for and contributed to the design of a patient-held tool, strongly influenced the detailed design and content of the research intervention and outcome questionnaire, thus making a major contribution to the trial design. Conclusion Stakeholders, including teenagers, can be actively involved in designing a research intervention and impact significantly on study outcomes. [ABSTRACT FROM AUTHOR]

Introduction: Technological improvements alone have not led to the integration of genomic medicine across a broad range of diseases and populations. For genomic medicine to be successfully implemented across specialties and conditions, the challenges patients and caregivers experience need to be identified using a multi‐faceted understanding of the context in which these obstacles occur and how they are experienced. Individuals affected by rare conditions, like Ehlers–Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), express numerous challenges with accessing genomic medicine. Many patients living with rare diseases seek information and find comfort in online health communities. Methods: Social media conversations facilitated through online health communities are windows into patients' and caregivers' authentic experiences. To date, no other study has examined genomic medicine barriers by analysing the content of social media posts, yet the novel methodological approach of social media listening permits the analysis of virtual, organic conversations about lived experiences. Results/Conclusions: Using a modified social–ecological model, this study found that social–structural and interpersonal barriers most frequently impede access to genomic medicine for patients and caregivers living with EDS and HSD. Patient or Public Contribution: Data were retrieved through social media conversations facilitated through publicly accessible health communities through Inspire, an online health community. Social media listening permits the analysis of virtual, organic conversations about lived experiences. [ABSTRACT FROM AUTHOR]

Background: Recent systematic reviews suggest mediating factors (barriers and facilitators) of help‐seeking for children and young people (CYP) with a range of mental health problems but highlight the need for a more robust methodology underpinned by theoretical frameworks. Emotional abuse and neglect is the most prevalent and pervasive form of abuse, with many CYP remaining unknown to professional services. These CYP are underrepresented in help‐seeking research yet seek help from their peers via anonymous online publicly available message communities. Objectives: To sensitively co‐develop qualitative methodology to explore 'real‐world' data to inform our understanding of help‐seeking for these CYP, and define potential mediators (barriers and facilitators) and mechanisms of change associated with online peer support. Methods: Co‐production with 10 young co‐researchers (YCoR; aged 14–18 years) from the NeurOX Young People's Advisory Group (YPAG) included co‐development and triangulation to apply different research methods (i.e., interpretative phenomenological, thematic and conversation analyses) to analyse rich ethnographic material from 20 publicly available online message conversations between help‐seekers experiencing or questioning emotional abuse and neglect. A theoretical model of adolescent help‐seeking proposed by Rickwood et al. was used as a conceptual framework to guide methodological development. Results: The methodological approach facilitated the identification of barriers and facilitators of help‐seeking contextualized to the lives of these CYP: understanding and validating of abuse, emotional competence, fears and uncertainties around disclosure, knowledge, motivational factors and connection/trusted relationships. Notably, positive changes in expressed or perceived 'psychological state' and/or intention to seek help were noticed in 9 of 10 message threads that included a 'conversation' (≥3 posts). Themes associated with change related to connection with supportive peers; compassionate responding and the safeness of the online community. The existing adolescent help‐seeking model was found to be too simplistic to account for help‐seeking associated with emotional abuse and neglect. Conclusion: The novel methodological approach offers a meaningful way to explore 'real‐world' data with YCoR, for a population underrepresented in help‐seeking research. Proposed relational mechanisms involve connection, compassion and online communities. Further research coproduced with YCoR with diverse care experiences and characteristics is required to upscale the methodology and further validate and extend the findings. Public Contribution: The core study was co‐produced with 10 YCoRs from the NeurOX YPAG who have been involved in over 135 h on and offline work. Their roles involved co‐deciding the direction of the study, evolving methodology, detailed co‐analysis and reflective processes throughout all aspects of the study, interpretation, presentation and discussion of the findings with the NSPCC and Childline, and involvement in all communications. Additional consultation and involvement included further interested members of the NeurOX YPAG for the final online workshop and dissemination outputs. [ABSTRACT FROM AUTHOR]

Background: Involving young people (YP) as co‐researchers (YCoR) in mental health research is important for ethical and epistemological reasons. However, approaches to involve and evaluate 'meaningful involvement' in complex qualitative mental health research, and how to evaluate impacts (or change) for the co‐researcher and the research is less well defined. Objectives: This co‐produced research explored the experiences of YP seeking help for emotional abuse and neglect via an online, peer‐peer message board. This practical case study aims to evidence the meaningful role and impacts associated with YCoR involvement in sensitive and complex mental health research using a flexible approach to co‐production. Methods: During the Covid‐19 pandemic, we explored on‐ and off‐line approaches and adapted research methodology to build relationships, knowledge, skills, and confidence with YCoR. The virtual involvement was evaluated against the five principles of co‐production. Anonymous, continuous digital feedback, reflective practices and multiple dissemination outputs are used to evaluate the impact of the study on those involved and the research. Results: Ten members of NeurOX Young People's Advisory Group were involved in the core project. Additional members were invited at later stages and in the dissemination of outputs. We describe a supportive, scaffolded learning approach to build capabilities and embed the lived experience of YCoR in complex qualitative research. A digital blended approach was acceptable to YCoR, principles of co‐production were met and the impact/benefits of involvement are described. To demonstrate the epistemological value of involving YP we evidence YPs capabilities for involvement and the 'change' or contribution YCoR made to the research through reflective practices. Conclusions: This case study demonstrates how flexible approaches co‐production with YCoR can be robust and responsive to balance ethical and epistemological impact in complex mental health research. Supportive, scaffolded practices and safe environments helped build the confidence and capacity of YCoRs to demonstrate valuable phenomenological insights in the analysis. YP's perspectives on how they describe 'meaningful' and impactful involvement illustrate the reciprocal benefits gained through working together. Public Contribution: This case study describes the YCoR involvement throughout the research and dissemination of outputs. YCoR co‐authors were involved in developing the outline and reviewing the draft stages of the manuscript. [ABSTRACT FROM AUTHOR]

Objective: Health consumers (patients, their family, friends and carers) are frequently using their smartphones to record hospital clinical encounters. However, there is limited research which has explored the social interaction surrounding this behaviour. Understanding the consumer perspective is key to informing policy and practice. This study explored consumer attitudes and experiences regarding patient‐led recordings. Methods: Semistructured interviews were undertaken with 20 hospital consumers. Participants were recruited via advertising, posters and invitation letters. Interviews were digitally recorded and transcribed. Data were analysed using thematic analysis. Findings: Four main themes were identified relating to participant perspectives of patient‐led recordings: (1) consumers viewed clinician consent as important, although they reported different experiences of the consent process, (2) consumers indicated that a clinician refusing the recording had the potential to undermine the consumer–clinician relationship, (3) consumers were both uninformed and misinformed regarding relevant policy and legislation and (4) consumers expressed a number of expectations regarding their rights to record and of the health service in supporting this practice. Conclusion: Consumers want to record their clinical encounters with the consent of their clinician but are unprepared to navigate consent discussions. Health services and clinicians should inform consumers who want to record about their rights and responsibilities, to support the consent process and safe recording environments. Clinician refusal to consent to a patient‐led recording may not lead to increased covert recording; however, clear communication about the reasons for refusing a recording is needed to protect the consumer–clinician relationship. Patient or Public Contribution: A health consumer was part of the research team and was involved in all stages of this study, including the design, data analysis and reviewing of the manuscript. [ABSTRACT FROM AUTHOR]

Background: Healthcare is witnessing a new disease with the emergence of Long Covid; a condition which can result in myriad symptoms, varying in frequency and severity. As new data are emerging to help inform treatment guidelines, the perspectives of those living with Long Covid are essential in informing healthcare practice. The research aimed to collect the narratives of people living with Long Covid to better understand the lived experience of this condition. In attempting to narrate complex or traumatic experiences the arts and humanities can offer alternative ways of expressing embodied narratives, representing rich sources of meaning. Therefore, the research specifically sought to elicit creative expressions from participants with lived experience of Long Covid. Methods: Data were collected via an online repository where participants could submit their pieces of creative writing. Data were collected between August 2021 and January 2022 and a total of 28 submissions were received from participants. These were mostly written creative narratives. However, a small number were submitted as audio or video files of spoken word poetry or songs. Data collection was stopped once data saturation was achieved. Results: The submissions were subjected to thematic analysis and five themes were generated. These five themes are Identity, social relationships, symptoms, interaction with healthcare systems and time. The results provide an insight into the experience of Long Covid as detailed by the participants' creative narratives. Conclusion: The results from this study provide a unique insight into the lived experience of Long Covid. In relation to clinical practice, the results suggest that adjustment reaction and loss of sense of self could be added as common symptoms. Patient and Public Contribution: Before undertaking the research, Long Covid community groups were contacted to discuss the potential value of this study and it was widely supported. One of the leading Long Covid support groups was also involved in disseminating information regarding the project. As part of ongoing work within this project, members of the team are actively disseminating the results within Long Covid communities and seeking to develop arts‐based workshops specifically for people with Long Covid. [ABSTRACT FROM AUTHOR]

Introduction: Growing numbers of older patients occupy hospital beds despite being 'medically fit' for discharge. These Delayed Transfers of Care amplify inefficiencies in care and can cause harm. Delayed transfer because of family or patient choice is common; yet, research on patient and family perspectives is scarce. To identify barriers to, and facilitators of, shorter hospital stays, we sought to understand older people's and caregivers' thoughts and feelings about the benefits and harms of being in hospital and the decisions made at discharge. Methods: A multimethod qualitative study was carried out. Content analysis was carried out of older people's experiences of health or care services submitted to the Care Opinion online website, followed by telephone and video interviews with older people and family members of older people experiencing a hospital stay in the previous 12 months. Results: Online accounts provide insight into how care was organized for older people in the hospital, including deficiencies in care organization, the discharge process and communication, as well as how care was experienced by older people and family members. Interview‐generated themes included shared meanings of hospitalization and discharge experiences and the context of discharge decisions including failure in communication systems, unwarranted variation and lack of confidence in care and lack of preparation for ongoing care. Conclusion: Poor quality and availability of information, and poor communication, inhibit effective transfer of care. Communication is fundamental to patient‐centred care and even more important in discharge models characterized by limited assessments and quicker discharge. Interventions at the service level and targeted patient information about what to expect in discharge assessments and after discharge could help to address poor communication and support for improving discharge of older people from hospital. Patient or Public Contribution: The Frailty Oversight Group, a small group of older people providing oversight of the Community Aging Research 75+ study, provided feedback on the research topic and level of interest, the draft data collection tools and the feasibility of collecting data with older people during the COVID‐19 pandemic. The group also reviewed preliminary findings and provided feedback on our interpretation. [ABSTRACT FROM AUTHOR]

An introduction to articles in this issue is presented including a link between community engagement and PPI in research, the importance of interpersonal relationships and good communication skills and a civic engagement approach based on social values.

Introduction: Healthcare facilities adopted restrictive visitor policies as a result of the COVID‐19 (COVID) pandemic. Though these measures were necessary to promote the safety of patients, families and healthcare providers, it led to isolation and loneliness amongst acute care inpatients that can undermine patient rehabilitation and recovery. The study objectives were to (1) explore how infection prevention and control (IP&C) measures impacted stakeholders' perceptions of care quality and interactions with others and (2) investigate how these experiences and perceptions varied across stakeholder groups and care settings. Methods: A qualitative descriptive study was conducted. Patients and their families from an inpatient COVID rehabilitation hospital and healthcare providers from an acute or rehabilitation COVID hospital were interviewed between August 2020 and February 2021. Results: A total of 10 patients, 5 family members and 12 healthcare providers were interviewed. Four major themes were identified: (1) IP&C measures challenged the psychosocial health of all stakeholders across care settings; (2): IP&C measures precipitated a need for greater relational care from HCPs; (3) infection prevention tenets perpetuated COVID‐related stigma that stakeholders experienced across care settings; and (4) technology was used to facilitate human connection when IP&C limited physical presence. Conclusion: IP&C measures challenged psychosocial health and maintenance of vital human connections. Loneliness and isolation were felt by all stakeholders due to physical distancing and COVID‐related stigma. Some isolation was mitigated by the relational care provided by HCPs and technological innovations used. The findings of the study underscore the need to balance safety with psychosocial well‐being across care settings and beyond the patient–provider dyad. Patient and Public Contribution: This study was informed by the Patient‐Oriented Research Agenda and developed through consultations with patients and family caregivers to identify priority areas for rehabilitation research. Priority areas identified that informed the current study were (1) the need to focus on the psychosocial aspects of recovery from illness and injury and (2) the importance of exploring patients' recovery experiences and needs across the continuum of care. The study protocol, ethics submission, analysis and manuscript preparation were all informed by healthcare providers with lived experience of working in COVID care settings. [ABSTRACT FROM AUTHOR]

Background: Studies have highlighted common challenges and barriers to patient engagement in research, but most were based on patient partners' or academic researchers' experiences. A better understanding of how both groups differentially experience their partnership could help identify strategies to improve collaboration in patient engagement research. Aim: This study aimed to describe and compare patient partners' and academic researchers' experiences in patient engagement research. Methods: Based on a participatory approach, a descriptive qualitative study was conducted with patient partners and academic researchers who are involved in the PriCARE research programme in primary health care to examine their experience of patient engagement. Individual semi‐structured interviews with patient partners (n = 7) and academic researchers (n = 15) were conducted. Academic researchers' interview verbatims, deidentified patient partners' summaries of their interviews and summaries of meetings with patient partners were analysed using inductive thematic analysis in collaboration with patient partners. Results: Patient partners and academic researchers' experiences with patient engagement are captured within four themes: (1) evolving relationships; (2) creating an environment that fosters patient engagement; (3) striking a balance; and (4) impact and value of patient engagement. Evolving relationships refers to how partnerships grew and improved over time with an acceptance of tensions and willingness to move beyond them, two‐way communication and leadership of key team members. Creating an environment that fosters patient engagement requires appropriate structural support, such as clear descriptions of patient partner roles; adequate training for all team members; institutional guidance on patient engagement; regular and appropriate translation services; and financial assistance. For patient partners and academic researchers, striking a balance referred to the challenge of reconciling patient partners' interests and established research practices. Finally, both groups recognized the value and positive impact of patient engagement in the programme in terms of improving the relevance of research and the applicability of results. While patient partners and academic researchers identified similar challenges and strategies, their experiences of patient engagement differed according to their own backgrounds, motives and expectations. Conclusion: Both patient partners and academic researchers highlighted the importance of finding a balance between providing structure or guidelines for patient engagement, while allowing for flexibility along the way. Patient or Public Contribution: Patient partners from the PriCARE research programme were involved in the following aspects of the current study: (1) development of the research objectives; (2) planning of the research design; (3) development and validation of data collection tools (i.e., interview guides); (4) production of data (i.e., acted as interviewees); (5) validation of data analysis tools (code book); (6) analysis of qualitative data; and (7) drafting of the manuscript and contributing to other knowledge translation activities, such as conference presentations and the creation of a short animated video. [ABSTRACT FROM AUTHOR]

Introduction: People who experience social disadvantage including homelessness suffer from numerous ill health effects when compared to the general public. Use of patient‐reported outcome measures (PROMs) and patient‐reported experience measures (PREMs) enables collection of information from the point of view of the person receiving care. Involvement in research and health care decision‐making, a process that can be facilitated by the use of PROMs and PREMs, is one way to promote equity in care. Methods: This article reports on a codevelopment and consultation study investigating the use of PROMs and PREMs with people who experience homelessness and chronic illness. Data were analysed according to interpretative phenomenological analysis. Results: Committee members with lived experience identified three themes for the role of PROMs and PREMs in health care measurement: trust and relationship‐building; health and quality of life; and equity, alongside specific recommendations for the design and administration of PROMs and PREMs. The codevelopment process is reported to demonstrate the meaningful investment in time, infrastructure and relationship‐building required for successful partnership between researchers and people with lived experience of homelessness. Conclusion: PROMs and PREMs can be meaningful measurement tools for people who experience social disadvantage, but can be alienating or reproduce inequity if they fail to capture complexity or rely on hidden assumptions of key concepts. Patient or Public Contribution: This study was conducted in active partnership between researchers and people with experience of homelessness and chronic illness, including priority setting for study design, data construction, analysis and coauthorship on this article. [ABSTRACT FROM AUTHOR]

Introduction: Regular reviews of medications, including prescription reviews and adherence reviews, are vital to support pharmacological effectiveness and optimize health outcomes for patients. Despite being more likely to report a long‐term illness that requires medication when compared to their white counterparts, individuals from ethnic minority communities are less likely to engage with regular medication reviews, with inequalities negatively affecting their access. It is important to understand what barriers may exist that impact the access of those from ethnic minority communities and to identify measures that may act to facilitate improved service accessibility for these groups. Methods: Semi‐structured interviews were conducted between June and August 2021 using the following formats as permitted by governmental COVID‐19 restrictions: in person, over the telephone or via video call. Perspectives on service accessibility and any associated barriers and facilitators were discussed. Interviews were audio‐recorded and transcribed verbatim. Reflexive thematic analysis enabled the development of themes. QSR NVivo (Version 12) facilitated data management. Ethical approval was obtained from the Health Research Authority (ref: 21/HRA/1426). Results: In total 20 participants from ethnic minority communities were interviewed; these participants included 16 UK citizens, 2 refugees and 2 asylum seekers, and represented a total of 5 different ethnic groups. Three themes were developed from the data regarding the perceived barriers and facilitators affecting access to medication reviews and identified approaches to improve the accessibility of such services for ethnic minority patients. These centred on (1) building knowledge and understanding about medication reviews; (2) delivering medication review services; and (3) appreciating the lived experience of patients. Conclusion: The results of this study have important implications for addressing inequalities that affect ethnic minority communities. Involving patients and practitioners to work collaboratively in coproduction approaches could enable better design, implementation and delivery of accessible medication review services that are culturally competent. Patient or Public Contribution: The National Institute for Health Research Applied Research Collaboration and Patient and Public Involvement and Engagement group at Newcastle University supported the study design and conceptualization. Seven patient champions inputted to ensure that the research was conducted, and the findings were reported, with cultural sensitivity. [ABSTRACT FROM AUTHOR]

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

Background: Processes of the patient and public involvement (PPI) in health research shifted quickly during 2020. Faced with large‐scale issues, such as the COVID‐19 pandemic, the need to adapt processes of PPI to uphold commitments to nurturing the practice of 'nothing about us without us' in research has been urgent and profound. We describe how processes of PPI in research on patient‐oriented methods of knowledge translation and implementation science were adapted by four teams in a Canadian setting. Methods: As part of an ongoing quality improvement self‐study to enhance PPI within these teams, team members shared their experiences of PPI in the context of this pivotal year during interviews and facilitated discussions. Drawing on these experiences, we outline challenges and reflections for adapting processes of PPI in health research on methods in times of urgency, conflict and fast‐moving change. Discussion: Our reflections offer insight into common issues encountered across teams that may be amplified during times of rapid change, including handling change and uncertainty, sustaining relationship‐building and hearing differing perspectives in processes of PPI. Conclusion: These learnings present an opportunity to help others active in or planning patient‐oriented methods research to reflect on the changing nature of PPI and how to adapt PPI processes in response to turbulent situations in the future. Patient and Public Contributions: The key reflections presented draw heavily from perspectives shared by eight patient and public partners in interviews and facilitated discussions (the conduct and analysis of data in the quality improvement self‐study). [ABSTRACT FROM AUTHOR]

Background: Guillain‐Barré syndrome (GBS) is a rare inflammatory peripheral nerve disorder with variable recovery. Evidence is lacking on experiences of people with GBS and measurement of these experiences. Objective: We aimed to develop and validate an instrument to measure experiences of people with GBS. Design: We used a cross‐sectional design and online self‐administered questionnaire survey. Question domains, based on a previous systematic review and qualitative study, covered experiences of GBS, symptom severity at each stage, healthcare and factors supporting or hindering recovery. Descriptive, exploratory factor and reliability analyses and multivariable regression analysis were used to investigate the relationships between variables of interest, explore questionnaire reliability and validity and identify factors predicting recovery. Setting and Participants: People with a previous diagnosis of GBS were recruited through a social media advert. Results: A total of 291 responders, of different sexes, and marital statuses, were included, with most diagnosed between 2015 and 2019. Factor analysis showed four scales: symptoms, information provided, factors affecting recovery and care received. Positive social interactions, physical activity including physiotherapy and movement, changes made at home and immunoglobulin treatment were important for recovery. Multivariable models showed that immunoglobulin and/or plasma exchange were significant predictors of recovery. Employment and recovery factors (positive interactions, work support and changes at work or home, physical activity and therapy), though associated with recovery, did not reach statistical significance. Conclusion: The questionnaire demonstrated good internal reliability of scales and subscales and construct validity for people following GBS. Patient Contribution: Patients were involved in developing and piloting the questionnaire. [ABSTRACT FROM AUTHOR]

Background: Researchers often stress the necessity and challenge of integrating the positionings of residents, family members and nurses in order to realize each actor's involvement in long‐term dementia care. Yet most studies approach user and family involvement separately. Aim: To explain how productive involvement in care provision is accomplished in triadic relationships between residents, family members and nurses. Methods: An ethnographic study of identity work, conducted between 2014 and 2016 in a Dutch nursing home. Findings: We identify four ideal‐typical identity positionings performed by nurses through daily activities. The findings reveal how their identity positionings were inseparable from those of the residents and family members as they formed triads. Congruent, or 'matching', identity positionings set the stage for productive involvement. Our systematic analysis of participants' identity work shows how—through embedded rights and responsibilities—their positionings inherently shaped and formed the triadic types and degrees of involvement observed within these relationships. Discussion and conclusion: This study both unravels and juxtaposes the interrelatedness of, and differences between, the concepts of user and family involvement. Accordingly, our findings display how residents, family members and nurses—while continuously entangled in triadic relationships—can use their identity positionings to accomplish a variety of involvement activities. To mirror and optimize the implementation of user and family involvement, we propose a rights‐based and relational framework based on our findings. Patient or public contribution: Conversations with and observations of residents; feedback session with the Clients' Council. [ABSTRACT FROM AUTHOR]

Service user involvement in health and social care is a key policy driver in the UK. In cancer care it is central to developing services which are effective, responsive and accessible to patients. Cancer network partnership groups are set up to enable joint working between service users and health care professionals and to drive service improvements. The aim of this study was to explore the influence of the cancer network partnership groups' service user involvement activities on cancer care. This was a qualitative study involving documentary analysis and in-depth case studies of a sample of partnership groups. Five partnership groups were purposively selected as case studies from Macmillan regions across the UK; documents were collated from a further five groups. Forty people, including core group members and key stakeholders in cancer services, were interviewed. The evidence from this study suggests that cancer network partnership groups are at their most influential at 'grass roots' level - contributing to patient information resources, enhancing access to services, and improving care environments. While such improvements are undoubtedly important to patients, the groups' aim is to influence strategic changes, for example in cancer care commissioning or macro-level policy decision-making. The evolution of open, participatory relationships between service users and professionals, and recognition of the value of experiential knowledge are seen as key factors in influencing cancer care. The provision of dedicated resources to strengthen service user involvement activities is also vital. [ABSTRACT FROM AUTHOR]

Background: Public health initiatives seek to modify lifestyle behaviours associated with risk (e.g., diet, exercise, and smoking), but underpinning psychological and affective processes must also be considered to maximize success. Objective: This study aimed to qualitatively assess how participants engaged with and utilized the best possible self (BPS)‐intervention specifically as a type 2 diabetes (T2D) prevention tool. Design and Methods: Fourteen participants engaged with a tailored BPS intervention. Reflexive thematic analysis analysed accounts of participant's experiences and feasibility of use. Results: All participants submitted evidence of engagement with the intervention. The analysis considered two main themes: Holistic Health and Control. The analysis highlighted several nuanced ways in which individuals conceptualized their health, set goals, and received affective benefits, offering insights into how people personalized a simple intervention to meet their health needs. Conclusions: To our knowledge, this is the first study to tailor the BPS intervention as a public health application for the prevention of T2D. The intervention enabled users to identify their best possible selves in a way that encouraged T2D preventive behaviours. We propose that our tailored BPS intervention could be a flexible and brief tool to assist public health efforts in encouraging change to aid T2D prevention. Public Contribution: The format, language and application of the BPS intervention were adapted in response to a public consultation group that developed a version specifically for application in this study. [ABSTRACT FROM AUTHOR]

Background: In this COVID‐19 era, we need to rethink the criteria used to measure the results of person‐centred care strategies. Objective: To identify priorities, and criteria that health services can use to pursue actually the goal of achieving person‐centred care. Design: Three‐phase online qualitative study performed during May–July of 2020 using the Delphi technique. Setting and Participants: An online platform was used for a consensus meeting of 114 participants, including health planning experts, health‐care institution managers, clinicians and patients. Main Outcome Measures: Criteria and indicators for the achievement of person‐centred care. Main Results: The first round began with 125 proposals and 11 dimensions. After the second round, 28 ideas reached a high level of consensus among the participants. Ultimately, the workgroup agreed on 20 criteria for goals in the implementation of person‐centred care during the COVID‐19 era and 21 related indicators to measure goal achievement. Discussion: Nine dimensions and 28 priorities were identified. These priorities are also in accordance with the quadruple aim approach, which emphasizes the need for care for health‐care professionals, without whom it is impossible to achieve a better quality of care. Conclusions: Person‐centred care continues to be a key objective. However, new metrics are needed to ensure its continued development during the restoration of public health services beyond the control of COVID‐19. Patient or Public Contribution: Twelve professionals and patient representatives participated voluntarily in the construction of the baseline questionnaire and in the selection of the criteria and indicators using an online platform for consensus meetings. [ABSTRACT FROM AUTHOR]

Background: Health knowledge, as an important resource of online health communities (OHCs), attracts users to engage in OHCs and improve the traffics within OHCs, thereby promoting the development of OHCs. Seeking and contributing health knowledge are basic activities in OHCs and are helpful for users to solve their health‐related problems, improve their health conditions and thus influence their evaluation of OHCs (ie perceived value of OHCs). However, how do patients' health knowledge seeking and health knowledge contributing behaviours together with other factors influence their perceived value of OHCs? We still have little knowledge. Objective: In order to address the above gap, we root the current study in social cognitive theory and prior related literature on health knowledge sharing in OHCs and patients' perceived value. We treat health knowledge seeking and health knowledge contributing behaviours as behavioural factors and structural social capital as an environmental factor and explore their impacts on patients' perceived value of OHCs. Design: We have built a theoretical model composed of five hypotheses. We have designed a questionnaire composed of four key constructs and then collected data via an online survey. Setting and participants: We have distributed the questionnaire in two Chinese OHCs. We obtained a sample of 352 valid responses that were completed by patients having a variety of conditions. Results: The empirical results indicate that health knowledge seeking and health knowledge contributing have positive impacts on patients' perceived value of OHCs. The impact of health knowledge seeking on patients' perceived value of OHCs is greater than the impact of health knowledge contributing. In addition, structural social capital moderates the effects of health knowledge seeking and health knowledge contributing on patients' perceived value of OHCs. It weakens the effect of health knowledge seeking but enhances the effect of health knowledge contributing on patients' perceived value of OHCs. Conclusions: These findings contribute to the literature on patients' perceived value of OHCs and on the role of structural social capital in OHCs. For OHC managers, they should provide their users more opportunities to seek or contribute health knowledge in their communities. [ABSTRACT FROM AUTHOR]

Objective: Research into patient and public involvement (PPI) has not examined in detail patient and public involvement facilitators' (PPIFs) roles and activities. This study analysed PPIFs' roles using qualitative data gathered from three different UK health‐care organizations. Design: Thematic analysis was used to examine cross‐sectional data collected using a mixed‐methods approach from three organizations: a mental health trust, a community health social enterprise and an acute hospital trust. The data set comprised of 27 interviews and 48 observations. Findings: Patient and public involvement facilitators roles included the leadership and management of PPI interventions, developing health‐care practices and influencing quality improvements (QI). They usually occupied middle‐management grades but their PPIF role involved working in isolation or in small teams. They reported facilitating the development and maintenance of relationships between patients and the public, and health‐care professionals and service managers. These roles sometimes required them to use conflict resolution skills and involved considerable emotional labour. Integrating information from PPI into service improvement processes was reported to be a challenge for these individuals. Conclusions: Patient and public involvement facilitators capture and hold information that can be used in service improvement. However, they work with limited resources and support. Health‐care organizations need to offer more practical support to PPIFs in their efforts to improve care quality, particularly by making their role integral to developing QI strategies. [ABSTRACT FROM AUTHOR]

Background: Patients and consumers are increasingly engaged in health policymaking, research and drug regulation. Having financial relationships with the health industry creates situations of conflicts of interest (COI) and might compromise their meaningful and unbiased participation. Objective: To synthesize available evidence on the financial relationships between the health industry and patient and consumer representatives and their organizations. Methods: We systematically searched MEDLINE and EMBASE. We selected studies and abstracted data in duplicate and independently. We reported on outcomes related to financial relationships of individuals with, and/or funding of organizations by the health industry. Results: We identified a total of 14 510 unique citations, of which 24 reports of 23 studies were eligible. Three studies (13%) addressed the financial relationship of patient and consumer representatives with the health industry. Of these, two examined the proportion of public speakers in drug regulatory processes who have financial relationships; the proportions in the two studies were 25% and 19% respectively. Twenty studies (87%) addressed funding of patient and consumer organizations. The median proportion of organizations that reported funding from the health industry was 62% (IQR: 34%‐69%) in questionnaire surveys, and 75% (IQR: 58%‐85%) in surveys of their websites. Among organizations for which there was evidence of industry funding, a median proportion of 29% (IQR: 27%‐44%) acknowledged on their websites receiving that funding. Conclusion: Financial relationships between the health industry and patient and consumer representatives and their organizations are common and may not be disclosed. Stricter regulation on disclosure and management is needed. [ABSTRACT FROM AUTHOR]

Background: Alzheimer's disease (AD) is recognized as one of the greatest global public health challenges. There is increasing consensus that optimal disease modification using pharmaceuticals may best be achieved earlier in the disease continuum before symptoms occur. However, more needs to be understood about what outcomes are meaningful to potential participants in clinical trials within this preventative paradigm and how people make trade‐offs between risks and benefits. The Electronic Person‐Specific Outcome Measure (ePSOM) programme is developing an app to capture person‐specific outcomes and preferences in clinical trials. Objective: As one phase in the ePSOM programme, this study explored what matters when developing new treatments to prevent AD and how trade‐offs are made between risks and benefits, from three perspectives. Design: Focus groups were conducted with people living with memory problems (n = 21) and healthy volunteers (n = 10), and telephone interviews with health and social care professionals (n = 10). Differences and overlap between the three groups were explored. Results: Outcomes that matter lie in five key domains in relation to what matters in everyday life: Everyday Functioning; Relationships and Social Connections; Enjoying Life; Sense of Identity; and Alleviating  Symptoms. Insights were gained into the significance of reducing the risk of developing dementia with drugs and the processes of weighing up risks versus benefits. Discussion and conclusions: The key domains identified are being used to inform the next stage of the ePSOM programme which is to develop a survey to be distributed nationally in the UK to explore these issues further. [ABSTRACT FROM AUTHOR]

Background: Codesign has the potential to transform health and other public services. To avoid unintentionally reinforcing existing inequities, better understanding is needed of how to facilitate involvement of vulnerable populations in acceptable, ethical and effective codesign. Objective: To explore citizens' involvement in codesigning public services for vulnerable groups, identify challenges and suggest improvements. Design: A modified case study approach. Pattern matching was used to compare reported challenges with a priori theoretical propositions. Setting and participants: A two‐day international symposium involved 28 practitioners, academics and service users from seven countries to reflect on challenges and to codesign improved processes for involving vulnerable populations. Intervention studied: Eight case studies working with vulnerable and disadvantaged populations in three countries. Results: We identified five shared challenges to meaningful, sustained participation of vulnerable populations: engagement; power differentials; health concerns; funding; and other economic/social circumstances. In response, a focus on relationships and flexibility is essential. We encourage codesign projects to enact a set of principles or heuristics rather than following pre‐specified steps. We identify a set of principles and tactics, relating to challenges outlined in our case studies, which may help in codesigning public services with vulnerable populations. Discussion and conclusions: Codesign facilitators must consider how meaningful engagement will be achieved and how power differentials will be managed when working with services for vulnerable populations. The need for flexibility and responsiveness to service user needs may challenge expectations about timelines and outcomes. User‐centred evaluations of codesigned public services are needed. [ABSTRACT FROM AUTHOR]