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

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

Background: Historically, researchers have been apt at conducting research on, rather than with, the people who are the focus of their efforts. Such approaches often fail to effectively support and benefit the populations they are intended to. This study aimed to explore the preferences of people with lived experience for engagement with research either as research participants within studies, or through active involvement in mental health research. Methods: Data for this paper were collected in three separate lived experience agenda‐setting studies conducted over a 9‐year period from 2013 to 2022; two group discussions and an open‐ended online survey. Data were combined and thematic analysis undertaken. Results: Participants described the inclusion of lived experience as a critical ingredient and the highest level of knowledge and expertise in mental health research that should lead to knowledge generation and research agendas. Participants discussed the importance and value of research that enables sharing experiences and stories, expressed a need for flexibility in research methods for choice and agency, and support for greater active involvement of people with lived experience across all stages of research. Participants also spoke to the need for perspective and knowledge generated from people with lived experience to have equal power in research, making space for lived experience voices across multiple aspects of research, and greater respect and recognition of the value of lived experience. Conclusion: Lived experience in mental health research is coming of age, but dedicated, cocreated development is needed to get it right. People with lived experience increasingly understand the value their experiential knowledge brings to the mental health research effort, and describe a wide range of ways that researchers can support them to be research participants, and to get actively involved. Power‐sharing, respect and recognition of lived experience as central to effective mental health research are the keys to 'keeping it real'. Patient or Public Contribution: People with lived experience of mental health problems or distress either personally, and/or as carers, family and kinship group members, were involved in the coideation and codesign of this research. All authors identify as people with lived experience. [ABSTRACT FROM AUTHOR]

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

Objectives: Despite high levels of mental ill‐health amongst young people (aged 15–30), this group demonstrates low help‐seeking and high drop‐out from mental health services (MHS). Whilst shared decision‐making can assist people in receiving appropriate and effective health care, young people frequently report that they do not feel involved in treatment decisions. The current study focused on co‐design of a clinical education and participant information programme for the Brain and Mind Centre Youth Model of Care. This model, which articulates a youth‐focused form of highly personalised and measurement‐based care, is designed to promote shared decision‐making between young people and clinical service providers. Methods: We conducted workshops with 24 young people (16–31; MAge = 21.5) who had accessed mental health services. Participants were asked what advice they would give to young people entering services, before giving advice on existing materials. Workshops were conducted and transcripts were coded using thematic analysis by two lived experience researchers and a clinical researcher. Results: Young people found it empowering to be educated on transdiagnostic models of mental illness, namely clinical staging, which gives them a better understanding of why certain treatments may be inappropriate and ineffective, and thus reduce self‐blame. Similarly, young people had limited knowledge of links between mental health and other life domains and found it helpful to be educated on multidisciplinary treatment options. Measurement‐based care was seen as an important method of improving shared decision‐making between young people and health professionals; however, to facilitate shared decision‐making, young people also wanted better information on their rights in care and more support to share their expertise in their own needs, values and treatment preferences. Conclusions: These findings will inform the delivery of the further development and implementation of a youth‐specific clinical education and participant information programme for the BMC Youth Model. Patient or Public Contribution: Workshops were facilitated by researchers with lived expertise in mental ill‐health (A.H. and/or C.G.) and a clinical researcher (who has expertise as an academic and a clinical psychologist). A.H. and C.G. were also involved in conceptualisation, analysis, interpretation, review and editing of this paper. [ABSTRACT FROM AUTHOR]

Aim: To describe the life situation of spouses having a partner with heart disease and adolescents living at home. Design: Qualitative inductive design. Method: Participants (n = 22) were included from three Scandinavian countries. Semi‐structured interviews were analysed using thematic analysis with an inductive and latent approach. Results: Three themes were derived. 'Being in spousal and parental role transition' described how daily life had been affected and parental responsibilities had been doubled due to their partner's heart disease. 'Living with unpredictability and insecurity' included how the unpredictable illness trajectory caused worries and affected the well‐being of the family. 'Managing a challenging life situation' highlights how spouses coped with their partners' heart disease and adapted to a new life situation. Conclusion: Young spouses' life situation was greatly affected by their partner's heart disease, resulting in increased responsibilities and double parenthood. Having a positive attitude and mindset towards life was used as a strategy to cope with the changed life situation and find a new way of life. Implications for the Profession and/or Patient Care: All family members are affected by heart disease. Spouses needed additional professional support and guidance on how to involve the children when a parent is ill. Impacts: This study highlights how young spouses, with adolescents living at home, experience their life situation.The life situation is unpredictable due to the partner's heart disease, as they must handle both caring for their partner and taking on double parenthood.Research involving family members can improve person‐ and family‐centred care and treatment outcomes in health care and society. Reporting Method: COREQ checklist was used preparing the manuscript. Patient or Public Contribution: Data collection included interviews with spouse. What Does This Paper Contribute to the Wider Global Clinical Community?: By highlighting the spouses changed life situation due to heart disease and the importance of including them in health care. [ABSTRACT FROM AUTHOR]

Background: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long‐term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. Methods: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. Results: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high‐risk situations, leading to hypervigilance and paternalistic approaches to care. Conclusion: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden. Patient or Public Contribution: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write‐up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors. [ABSTRACT FROM AUTHOR]

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

Background: The global population is ageing rapidly and there is a need for strategies to promote health and wellbeing among older adults. Nutrition knowledge is a key predictor of dietary intake; therefore, effective educational programmes are urgently required to rectify poor dietary patterns. Digital health technologies provide a viable option for delivering nutrition education that is cost‐effective and widely accessible. However, few technologies have been developed to meet the unique needs and preferences of older adults. Objective: The aim of this study was to explore technology use among older adults and qualitatively determine the content needs and design preferences for an online nutrition education resource tailored to older adult consumers in Australia. Methods: Twenty adult participants aged 55 years and older (95% female) participated in one of four 2‐h participatory design workshops. In each workshop, prompted discussion questions were used to explore participants' technology use and preferences and to explore content needs and design preferences for an online nutrition education resource specific to older adults. Results: All participants were regularly using a range of different devices (e.g., smartphones, tablets and computers) and reported being comfortable doing so. Participants wanted a website that provided general nutrition information, practical advice and recipes. To enhance engagement, they sought a personalised resource that could be adjusted to suit their needs, included up‐to‐date information and allowed for easy sharing with others by exporting information as a PDF. Conclusions: Participatory design methods generate new knowledge for designing and tailoring digital health technologies to be appropriate and useful for the target audience. Specifically, older adults seek an online resource that has large and simple fonts with clear categories, providing them with practical advice and general nutrition information that can be personalised to suit their own needs and health concerns, with the option to export and print information into a paper‐based format. Patient or Public Contribution: Older adults actively participated in the development and evaluation process to generate ideas about potential features, functionalities, uses and practicalities of an online nutrition education resource. [ABSTRACT FROM AUTHOR]

Introduction: People who call emergency ambulances frequently are often vulnerable because of health and social circumstances, have unresolved problems or cannot access appropriate care. They have higher mortality rates. Case management by interdisciplinary teams can help reduce demand for emergency services and is available in some UK regions. We report results of interviews with people who use emergency ambulance services frequently to understand their experiences of calling and receiving treatment. Methods: We used a two‐stage recruitment process. A UK ambulance service identified six people who were known to them as frequently calling emergency services. Through third‐sector organisations, we also recruited nine individuals with healthcare experiences reflecting the characteristics of people who call frequently. We gained informed consent to record and transcribe all telephone interviews. We used thematic analysis to explore the results. Results: People said they make frequent calls to emergency ambulance services as a last resort when they perceive their care needs are urgent and other routes to help have failed. Those with the most complex health needs generally felt their immediate requirements were not resolved and underlying mental and physical problems led them to call again. A third of respondents were also attended to by police and were arrested for behaviour associated with their health needs. Those callers receiving case management did not know they were selected for this. Some respondents were concerned that case management could label frequent callers as troublemakers. Conclusion: People who make frequent calls to emergency ambulance services feel their health and care needs are urgent and ongoing. They cannot see alternative ways to receive help and resolve problems. Communication between health professionals and service users appears inadequate. More research is needed to understand service users' motivations and requirements to inform design and delivery of accessible and effective services. Patient or Public Contribution: People with relevant experience were involved in developing, undertaking and disseminating this research. Two public contributors helped design and deliver the study, including developing and analysing service user interviews and drafting this paper. Eight public members of a Lived Experience Advisory Panel contributed at key stages of study design, interpretation and dissemination. Two more public contributors were members of an independent Study Steering Committee. [ABSTRACT FROM AUTHOR]

Background: Current research has identified how ethnic minority women experience poorer health outcomes during the perinatal period. In the United Kingdom, specialist perinatal mental health services provide mental health treatment for women throughout the perinatal period. Service users have previously highlighted that perinatal services are hard to access and lack cultural sensitivity, whereas healthcare professionals have described limited opportunities and resources for developing cultural competency. Objectives: We explored the experiences of ethnic minority women with National Health Service (NHS) specialist perinatal teams and identified what culturally sensitive perinatal mental health care means to this group. Design: Individual semi‐structured interviews were conducted, and an interpretative phenomenological analysis framework was used to analyse the interview transcripts. Setting and Participants: Participants were recruited from NHS specialist perinatal teams and online via social media. Results: Six women were interviewed. Four group experiential themes central to the experiences of participants emerged: (1) strengthening community networks and peer support; (2) valuing cultural curiosity; (3) making sense of how culture, ethnicity, race and racism impact mental health; and (4) tailoring interventions to ethnic minority women and their families. Discussion and Conclusions: The findings capture how ethnic minority women experience specialist perinatal teams and offer insights into practising culturally sensitive care. Perinatal mental health professionals can support ethnic minority women by strengthening their access to community resources and peer support; being curious about their culture; helping them to make sense of how culture, ethnicity, race and mental health interact; and applying cultural and practical adaptations to interventions. Patient or Public Contribution: A Lived Experience Advisory Group (LEAG) of women from ethnic minority groups contributed to the design and conduct of this study. The LEAG had lived experience of perinatal mental health conditions and accessing specialist perinatal teams. The LEAG chose to co‐produce specific aspects of the research they felt fit with their skills and available time throughout five group sessions. These aspects included developing the interview topic guide, a structure for debriefing participants and advising on the social media recruitment strategy. [ABSTRACT FROM AUTHOR]

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

Introduction and Aims: Stroke survivors with aphasia (impaired language/communication) have poor outcomes and gaps in the clinical implementation of best practice contribute to this. Little is known, however, about speech pathologist perspectives on the touchpoints (key moments shaping experiences) in the clinical care pathway that have the greatest impact on service delivery nor how this varies by geographical location. We explored the experiences of speech pathologists who provide aphasia services to establish priorities for improvement and design. Methods and Analysis: This is the initial experience gathering and priority identification stage of an experience‐based co‐design (EBCD) project. Speech pathologists were recruited from 21 geographically diverse Hospital and Health Services in Queensland, Australia. Speech pathologists working in acute, rehabilitation and community services shared positive and negative experiences of delivering aphasia care in interviews and focus groups. Experiential data were analysed using qualitative thematic analysis to determine touchpoints. Priorities for service design were identified using an adapted nominal group technique. Results: Speech pathologists (n = 62) participated in 16 focus groups and nine interviews and shared 132 experiences of delivering aphasia care. Providing care in teams with poor awareness of the impacts of aphasia was identified as a key challenge, as poor patient‐provider communication was perceived to increase risk of adverse outcomes for patients. Speech pathologists identified areas for improvement related to their own professional needs (e.g., greater access to clinical supervision); collaborative health care (e.g., better coordination and interdisciplinary care to increase therapy time); and the service context and environment (e.g., psychological services able to support diverse communication needs). Conclusions: Speech pathologist delivery of aphasia services could be improved through increased access to clinical supervision, opportunities for peer debriefing and interdisciplinary care. Priorities for service design varied by geographical location and included: education to support care transitions (remote areas), improved referral pathways and service linkage (regional areas) and dedicated aphasia staffing (metropolitan areas). Patient or Public Contribution: A consumer advisory committee comprising people with aphasia (n = 3, authors K.M., K.D. and B.A.), their significant others (n = 2, authors J.D. and P.M.), and a Cultural Capability Officer (author G.B.) guided this research. The team: (1) reviewed participant information; (2) co‐designed surveys and workshop resources; (3) copresented research outcomes and contributed to publications. Research questions and study design (e.g., analysis methods and assessment measures) were developed by the research team (authors L.A., V.J.P., D.A.C. and S.J.W.). [ABSTRACT FROM AUTHOR]

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

Background: Integrated care is based around values of involvement and shared decision‐making, but these are not often reflected within planning and implementation. Barriers include continued emphasis on professional and managerial perspectives, skills gaps on how best to engage people and communities and insufficient investment in involvement infrastructure. Despite such challenges, people with lived experience have still led changes in policy and services. Design: Qualitative study involving 25 participants with lived experience from 12 countries. Participants shared their background stories and engaged in semistructured interviews relating to leadership identity, experience of influencing and personal learning. Transcripts were analysed through a framework approach informed by narrative principles. Results: Participants were motivated by their own experiences and a wish to improve care for future individuals and communities. Sharing their story was often the entry point for such influencing. Participants gained skills and confidence in story telling despite a lack of support and development. Many felt comfortable being described as a leader while others rejected this identity and preferred a different title. No common alternative term to leader was identified. Influencing services required considerable personal cost but also led to new networks, skills development and satisfaction when change was achieved. Discussion: Leadership within integrated care is often awarded to those with structural power related to management or clinical seniority. People with lived experience are though uniquely placed to identify what needs to change and can develop inspiring visions based around their personal stories. Claiming identity as leader can be challenging due to traditional notions of who is eligible to lead and unwillingness by professionals and managers to grant such identity. Conclusions: People with lived experience should be recognised as leaders of integrated care and have access to developmental opportunities and practical support to strengthen their skills, including that of storytelling. Patient and Public Contribution: The research was instigated on the request of a community advisory board of people with lived experience who shaped its design, contributed to the analysis and informed the conclusions and implications. [ABSTRACT FROM AUTHOR]

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

Background: A growing body of research is addressing the process and science of engaging people with lived experience (PWLE) of mental health challenges and other psychiatric conditions, and family members, in research activities. Objective: This scoping review of reviews synthesizes literature reviews on the engagement of PWLE and family members in research across the field of psychiatry. Method: Systematic searches were conducted in seven bibliographic databases. Records were independently screened first at the title and abstract level, then at the full‐text level. Included were any literature synthesis studies published in English, French, or Spanish in any given year, focusing on the engagement of PWLE and/or family members in research within psychiatry. Twenty records were included. Data were extracted in a spreadsheet and codebook thematic analysis was used across the body of articles to synthesize the findings. Results: Aspects of PWLE engagement have been synthesized in 20 review articles reviewing 376 articles across psychiatry as a whole and several subpopulations, including youth mental health, dementia, neurodevelopmental disorders, people who use drugs, and forensic mental health. Information specific to family engagement is lacking. Barriers, facilitators, and positive impacts of PWLE engagement have been widely reported across domains of research, with a considerable degree of consensus across subpopulations. Some negative impacts and reporting challenges have also been identified. Discussion: This scoping review of reviews provides an overarching understanding of the current state of the science of PWLE and family engagement across psychiatry research. The findings can inform future research practices enriched with a genuine and effective engagement with PWLE and families. Patient or Public Contribution: The authorship team includes members with intersecting lived experience and academic identities. Additional lived experience engagement was not conducted as part of this review. [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: Best practice guidelines for the recovery and return to work (RTW) of people with mental disorders recommend access to the services of an interdisciplinary team combining pharmacological, psychological and work rehabilitation interventions. In the Canadian context, primary healthcare services are responsible for providing these services for people with common mental disorders, such as depressive or anxiety disorders. However, not everyone has easy access to these recommended primary healthcare services, and previous studies suggest that multiple personal, practice‐related and organizational factors can influence the patient's journey. Moreover, previous studies documented that family physicians often work in silos and lack the knowledge and time needed to effectively manage by themselves patients' occupational health. Thus, the care and service trajectories of these patients are often suboptimal and can have important consequences on the person's recovery and RTW. Objective and Population Studied: Our study aimed to gain a better understanding of the patient journeys and the factors influencing their access to and experience with primary healthcare services while they were on sick leave due to a common mental disorder. Methods: A descriptive qualitative research design was used to understand and describe these factors. Conventional content analysis was used to analyze the verbatim. Results: Five themes describe the main factors that influenced the patient's journey of the 14 participants of this study: (1) the fragmented interventions provided by family physicians; (2) patients' autonomy in managing their own care; (3) the attitude and case management provided by the insurer, (4) the employer's openness and understanding and (5) the match between the person's needs and their access to psychosocial and rehabilitation services. Conclusions: Our findings highlight important gaps in the collaborative practices surrounding the management of mental health‐related sick leave, the coordination of primary healthcare services and the access to work rehabilitation services. Occupational therapists and other professionals can support family physicians in managing sick leaves, strengthen interprofessional and intersectoral collaboration and ensure that patients receive needed services in a timelier manner no matter their insurance coverage or financial needs. Patients of Public Contribution: This study aimed at looking into the perspective of people who have lived or are currently experiencing a sick leave related to a mental health disorder to highlight the factors which they feel hindered their recovery and RTW. Additionally, two patient partners were involved in this study and are now engaged in the dissemination of the research results and the pursuit of our team research programme to improve services delivered to this population. [ABSTRACT FROM AUTHOR]

Background: The involvement of people with lived experience (LEX) workers in the development, design, and delivery of integrated health services seeks to improve service user engagement and health outcomes and reduce healthcare gaps. Yet, LEX workers report feeling undervalued and having limited influence on service delivery. There is a need for systematic improvements in how LEX workforces are engaged and supported to ensure the LEX workforce can fully contribute to integrated systems of care. Objective: This study aimed to operationalize the Consolidated Framework for Implementation Research (CFIR) using a rigorous scoping review methodology and co‐creation process, so it could be used by health services seeking to build and strengthen their LEX workforce. Search Strategy: A systematic literature search of four databases was undertaken to identify peer‐reviewed studies published between 2016 and 2022 providing evidence of the inclusion of LEX workers in direct health service provision. Data Extraction and Synthesis: A descriptive‐analytical method was used to map current evidence of LEX workers onto the CFIR. Then, co‐creation sessions with LEX workers (n = 4) and their counterparts—nonpeer workers (n = 2)—further clarified the structural policies and strategies that allow people with LEX to actively participate in the provision and enhancement of integrated health service delivery. Main Results: Essential components underpinning the successful integration of LEX roles included: the capacity to engage in a co‐creation process with individuals with LEX before the implementation of the role or intervention; and enhanced representation of LEX across organizational structures. Discussion and Conclusion: The adapted CFIR for LEX workers (CFIR‐LEX) that was developed as a result of this work clarifies contextual components that support the successful integration of LEX roles into the development, design, and delivery of integrated health services. Further work must be done to operationalize the framework in a local context and to better understand the ongoing application of the framework in a health setting. Patient or Public Contribution: People with LEX were involved in the operationalization of the CFIR, including contributing their expertise to the domain adaptations that were relevant to the LEX workforce. [ABSTRACT FROM AUTHOR]

Background: This study investigated healthcare access and quality for people who are transgender and gender‐diverse (PTGD) in Saskatchewan (SK), Canada, to inform a larger project that was piloting two peer health navigators for PTGD. Methods: Two online focus groups were held. Nineteen participants were recruited to represent a broad range in age, gender and location in SK. Transcripts of the focus groups were analyzed using a thematic approach. Results: The core theme that was identified was participants' desire for culturally safe healthcare. This core theme had two component themes: (1) systemic healthcare factors and (2) individual healthcare provider (HCP) factors. The healthcare system primarily acted as a barrier to culturally safe healthcare. HCPs could be either barriers or facilitators of culturally safe care; however, negative experiences outweighed positive ones. Conclusions: PTGD in SK face discrimination, with delays and barriers to care at all levels of the healthcare system. Peer health navigators can address some of these discrepancies; however, greater support is required for PTGD to be able to access culturally safe healthcare. Patient or Public Contribution: People with lived experience/PTGD were involved in all stages of this project. They were included on the team as community researchers and co‐developed the research project, conducted the focus groups, participated in the analyses and are co‐authors. As well, both navigators and all the participants in the focus groups were also PTGD. [ABSTRACT FROM AUTHOR]

Introduction: The transition from hospital to home is often suboptimal, resulting in patients not receiving the necessary allied healthcare after discharge. This may, in turn, lead to delayed recovery, a higher number of readmissions, more emergency department visits and an increase in mortality and healthcare costs. This study aimed to gain insight into patients' experiences, perceptions, and needs regarding hospital‐to‐home transition, focusing on allied healthcare as a first step towards the development of a transitional integrated allied healthcare pathway for patients with complex care needs after hospital discharge. Methods: We conducted semistructured interviews with patients. Participants were recruited from universities and general hospitals in the Amsterdam region between May and July 2023. They were eligible if they (1) were discharged from the hospital minimally 3 and maximally 12 months after admission to an oncologic surgery department, internal medicine department, intensive care unit, or trauma centre, (2) received hospital‐based care from at least one allied healthcare provider, who visited the patient at least twice during hospital admission, (3) spoke Dutch or English and (4) were 18 years or older. Interviews were audio‐recorded and transcribed verbatim. We performed a thematic analysis of the interview data. Results: Nineteen patients were interviewed. Three themes emerged from the analysis. 'Allied healthcare support during transition' depicts patients' positive experiences when they felt supported by allied health professionals during the hospital‐to‐home transition. 'Patient and family involvement' illustrates how much patients value the involvement of their family members during discharge planning. 'Information recall and processing' portrays the challenges of understanding and remembering overwhelming amounts of information, sometimes unclear and provided at the wrong moment. Overall, patients' experiences of transitional care were positive when they were involved in the discharge process. Negative experiences occurred when their preferences for postdischarge communication were ignored. Conclusions: This study suggests that allied health professionals need to continuously collaborate and communicate with each other to provide patients and their families with the personalized support they need. To provide high‐quality and person‐centred care, it is essential to consider how, when, and what information to provide to patients and their families to allow them to contribute to their recovery actively. Patient or Public Contribution: The interview guide for this manuscript was developed with the assistance of patients, who reviewed it and provided us with feedback. Furthermore, patients provided us with their valuable lived experiences by participating in the interviews conducted for this study. [ABSTRACT FROM AUTHOR]

Purpose: Long Covid syndrome is a multiorgan condition with multiple sequelae affecting quality of life, capacity to work and daily activities. The advantages that new technologies can offer are presented as an opportunity in the current healthcare framework. Objective: This research aimed to explore people with Long Covid's experiences with a digital physiotherapy practice intervention, during four weeks. Methods: Qualitative semistructured interviews were conducted by video call. Thirty‐two Long Covid participants were invited to join an in‐depth interview once the intervention was completed. Participants were queried on their intervention experiences and perceptions, as well as any lifestyle changes made, as a result of receiving digital physiotherapy practice. The interviews were transcribed and analysed using inductive qualitative content analysis. Results: In‐depth qualitative analysis has revealed four themes that reflect participants' perceptions of digital physiotherapy intervention. The helpfulness of the exercises, interaction with the physiotherapist, the domestic use of technology and the future of digital health practice were the topics highlighted by Long Covid participants. Some improvements have been suggested including video sounds and the need to introduce face‐to‐face sessions. Participants stated that interventions were helpful and superior to printed exercise sheets, mobile phone apps and usual care received. This intervention did not present major barriers, highlighting the importance of personalized care and continuity in the provision of health services. Conclusion: The digital physiotherapy practice is perceived by people with Long Covid as an appropriate method for the care of their health needs. Participants stated the need for this type of intervention in the public health system, where it would eliminate waiting lists, facilitate accessibility and improve existing care. Patient and Public Contribution: Participants contributed to the interpretation of the data acquired in the interview. Clinical Trial Registration: Trial registration NCT04742946. [ABSTRACT FROM AUTHOR]

Background and Context: Involving people with lived experience of health conditions and the public (consumers) in health research is supported by policy, practice and research funding schemes. However, consumer involvement programmes in discovery‐based preclinical research settings are uncommon. Few formal evaluations of these programmes are reported in the literature. Objective: This study aimed to evaluate an established patient and public involvement programme operating in a major Australian Discovery‐Based Medical Research Institute (DBMRI) to inform programme development and the wider field. Design and Participants: A multimethods programme evaluation incorporating demographic, descriptive and qualitative data obtained through consumer/researcher co‐developed online surveys and semistructured virtual interviews. Programme participants (n = 111) were invited to complete an online survey seeking feedback on their experience of involvement, programme processes and perceived impacts. A purposive sample of 25 participants was interviewed. Descriptive data were analysed using explanatory statistics and qualitative data from surveys and interviews were thematically analysed. Results: This consumer involvement programme was found to be useful and meaningful for most participants, with specific examples of perceived added value. Consumers most commonly engaged with researchers to inform research development, prepare funding applications or strengthen lay communication of science. Genuine consumer–researcher interactions, relationship development and mutual respect were key elements in a positive experience for participants. Opportunities to 'give back', to learn and to ground research in lived experience were identified programme strengths and benefits. Developing researcher training in how to work with consumers, increasing the diversity of the consumer group membership and expanding the range of consumer activities were identified opportunities for improvement. Organisational support and adequate programme resourcing were identified as key enablers. Conclusion: Discovery‐based preclinical research is often viewed as being distant from clinical application; therefore, consumer involvement may be considered less relevant. However this study identified value in bringing a strong consumer voice to the discovery‐based research process through a coordinated, organisation‐wide approach with the potential for application in similar preclinical research settings. Patient or Public Contribution: Four consumer partners from the DBMRI Consumer Advisory Panel were actively engaged in developing this programme evaluation. Specifically, these consumer partners co‐developed and pilot‐tested surveys and interview guides, reviewed and commented on project data analysis and reporting and also contributed as co‐authors by editing the manuscript. [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]

Introduction: The usual output following health consultations from paediatric services is a clinical letter to the referring professional or primary care provider, with a copy sent to the patient's caregiver. There is little research on how patients and caregivers perceive the letter content. We aimed to: first understand child, young people and caregiver experiences of and preferences for receiving a health feedback letter about the child/young person's health measures within a healthy lifestyle programme; and second to provide a set of recommendations for designing letters to children, young people and their families within a healthy lifestyle programme. Methods: This qualitative study, informed by Kaupapa Māori principles, included focus groups of children aged 5–11 years and young people aged 12–18 years who were participants in a healthy lifestyle programme in Taranaki, Aotearoa New Zealand and of their respective caregivers (total n = 47). Discussions were audio‐recorded, transcribed and analysed using thematic analysis. Findings: Key themes were identified: letters sometimes acted as 'discourses of disempowerment'—some participants experienced a lack of safety, depersonalisation with medical jargon and 'feeling like a number'. Participants described the need for acknowledgement and affirmation in written communication—health feedback should include validation, choice regarding content, respectful tone and a strengths‐based approach to health messages. Interpretation: Letters to referrers, copied to families, can be perceived as disempowering, and participant and caregiver perspectives of content should be considered. This study challenges conventional practice in communicating health feedback with broader implications for written communication in healthcare. We propose separate letters aimed at the child/young person and their caregiver that offer choice in the information they receive. The administrative burden of multiple letters can be mitigated by advances in digital health. Patient Contribution: This study originated in response to feedback from service users that current health feedback was not meeting their needs or expectations. Patient perspectives, especially from children, are rarely considered in the generation of clinic letters from health professionals. Participants were child participants in the community‐based clinical service and their caregivers, and care was taken to represent the demographic backgrounds of service users. Collection and interpretation of Māori data were led by researchers who were local community members to ensure prioritisation and preservation of participant voice. Where possible, results are illustrated in the text by direct quotes from participants, whose identities are protected with a pseudonym. [ABSTRACT FROM AUTHOR]

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

Aims: This study aimed to explore the perceptions of Meals on Wheels (MoWs) service users (SUs), and people who refer them to MoWs ('referrers'), with accessing and commencing the service in England, the barriers that might hinder service uptake, and what information would be valued when considering accessing the service. Methods: Semistructured interviews were conducted in May–July 2022 with seven SUs and 21 referrers, recruited from four MoWs providers across England. Data were analysed using inductive thematic analysis. Results: Participants indicated various pathways into the service, but referrers (family members) were more likely to be the ones enquiring about, and commencing, MoWs for SUs. Once an enquiry about MoWs had been made, the service was perceived as straightforward to set up. However, existing preconceptions and stereotypes were perceived to act as barriers to accessing MoWs. Information that participants deemed important to have available when deciding on whether to access MoWs related to the meals, the specific services provided, the reliability and flexibility of delivery and the cost of services. Conclusion: These findings could inform MoWs service providers' public awareness strategies about MoWs, to facilitate referrals to the service for adults with care and support needs. Patient or Public Contribution: An advisory group of people with lived experience of MoWs (users of the service and their family referrers) extensively discussed the findings of the research and advised on the implications and future dissemination steps. [ABSTRACT FROM AUTHOR]

Background: Persistent somatic symptoms (PSS) frequently remain under‐treated in health care settings. Evidence‐based services that lead affected individuals to early guideline‐based care are currently missing. This study aimed to identify the needs of those affected concerning an internet‐based guide. The second aim was to evaluate public and patient involvement (PPI). Methods: Participants experiencing PSS for at least 6 months were recruited via hospitals, psychotherapeutic practices and self‐help organizations. Qualitative data were gathered via ideation discussions and prioritization tasks. Thematic analysis was conducted to gain insight on the needs of people with lived experiences. PPI was quantitatively evaluated with the Public and Patient Engagement Evaluation Tool. Results: A total of 12 individuals participated (eight females, ages 22–66 years, duration of symptoms 1–43 years). Participants wanted to feel more supported, validated, in control and engaged with managing their health. Content‐related preferences included education, self‐help, social support and contact addresses. The majority of participants (>90%) experienced their involvement as worthwhile. Conclusions: To the best of our knowledge, this is one of the first studies describing PPI in intervention development for PSS. The involvement was perceived as a valuable contribution to the development process. Patient or Public Contribution: Adults with lived experiences were involved at the level of collaboration through the establishment of a participatory research team (PRT) and at the level of consultation through a workshop series, including one of the coauthors. They were involved in developing and validating intervention material and checking data interpretation. [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]