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Background: The role of patient participation and representation during crises, such as the COVID‐19 pandemic, has been under‐researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID‐19 pandemic. Methods: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. Results: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision‐making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision‐making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. Conclusions: The struggle for patient representation during pandemic decision‐making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision‐making offer lessons for future representation activities. However, adaptations to the crisis decision‐making structure are also needed to enable patient representatives to play their role. Patient Contribution: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co‐authored this paper. [ABSTRACT FROM AUTHOR]

Background: For adults with inflammatory bowel disease (IBD), they experience many challenges in dietary decision‐making. Thus, this study examined the perspective and experiences of adults with IBD in dietary decision‐making. Objective: This study aimed to explore the perception and consideration of people with IBD in their daily dietary decisions through monitoring, interpretation and action during the decision‐making process. Design: A qualitative study of individuals affected by IBD was conducted through semistructured interviews. Results: Twenty patients were recruited from four tertiary hospitals in Nanjing, China, and each participant completed a semistructured interview. The majority of participants reported on the process and experience of dietary decision‐making. Key themes were categorised into three stages: (1) assessing needs, preferences and food cues (monitor); (2) moving from experience to expertise (interpret) and (3) balancing expectations amidst limitations (act). The majority of participants reported that their decisions were shaped by assessing current disease status and food cues. Those interviewed with IBD were willing to make tradeoffs for bowel stability, but their decisions were also influenced by past dietary experiences and traditional Chinese beliefs. The lack of awareness of dietary guidelines was a significant barrier to healthy eating decisions. Positive or negative feelings accompanied dietary decisions. Conclusion: Although most people with IBD change their diet after diagnosis, the changes made are often inconsistent with existing dietary recommendations. Several factors can influence the dietary decision‐making process. This study will help assess the experiences of people with IBD in dietary decision‐making to encourage the formation of targeted dietary health and well‐being interventions. Knowledge of nutrition and diet should be provided in education and training programmes for IBD management. Patient or Public Contribution: The first three authors of this paper were the lead researchers in this study's design. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process was co‐lead and directed by other patient participants and consultants. The results of this paper were directly obtained from patient participants. [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]

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

Background: Informal care features high on the policy agenda of many countries to deal with workforce shortages. As a consequence, care provision increasingly takes place in the care triad of care recipients, informal caregivers and care professionals. How collaboration between care partners takes shape depends on how the different partners perceive this collaboration. This paper aims to investigate the relative importance of the different aspects of collaboration from the perspectives of care recipients, informal caregivers and care professionals in the context of the care for older persons in The Netherlands. Methods: Using Q‐methodology, 32 participants ranked 28 statements that reflect different aspects of collaboration in the care triad and explained their ranking during a follow‐up interview. Participants comprised 9 older persons, 10 informal caregivers and 13 care professionals. Data were analysed using by‐person factor analysis to identify common patterns in the rankings of the statements. Emerging patterns were interpreted and described as views on collaboration using aggregated rankings and qualitative data from the interviews. Results: Five distinct views on collaboration were found: (1) Emphasizing warm collaboration, (2) trusting care professional's expertise, (3) open and compassionate care professionals, (4) responsive decision‐making by autonomous care professionals and (5) prioritizing care recipient's and informal caregiver's interests. Care recipients and/or informal caregivers were associated with views 1, 3 and, 5, whereas care professionals were associated with all five views. Conclusions: Our study highlights the importance of recognizing the potential diversity of views between and within different partner groups in care triads. Governmental and organizational policy makers, as well as healthcare professionals who aim to increase or support the involvement of informal caregivers, should take this heterogeneity into consideration. Patient or Public Contribution: An advisory board of older persons (care recipients and informal caregivers) was involved in the recruitment of the participants, the formulation of the statements and the reflection on the findings of the study and potential implications. [ABSTRACT FROM AUTHOR]

Introduction: Telepractice service delivery of allied health interventions to people with disability can potentially reduce access barriers and improve service equity. However, questions remain regarding telepractice functionality for people with disability. This study addressed questions related to how allied health clinicians and managers perceive telepractice as functioning in the provision of therapy services to people with disability. Methods: Thirteen interviews of allied health clinicians and managers from across Australia were conducted between 21 November and 22 February via MS teams. Qualitative methodology and critical realist theoretical paradigm underpin the study. Data analysis was completed using a reflective thematic analysis method and five themes were generated and described utilising an analytic metaphor. Results: The study themes were described in relation to a shopping for shoes analytic metaphor and the five themes included (1) a shoe for every foot, (2) planned purchases, (3) shoe on the other foot, (4) you need both shoes and (5) help choosing their shoes. In summary, the function of telepractice fits differently for each individual, similar to pairs of shoes. Conclusions: Telepractice has its own strengths and weaknesses and isn't a direct substitute for in‐person sessions, much like left and right shoes are similar but not the same. The results support participant perceptions that telepractice functions best as an adjunct to in‐person sessions through a flexible hybrid delivery model in the provision of therapy services to people with a disability. A strategy for improving perceived usefulness may involve positioning telepractice as unique with strengths and weaknesses, not replacing in‐person care. Patient or Public Contribution: The paper forms part of a larger codesign process which included customer and carer participants throughout the design and planning of the project, inclusion of a peer researcher, and the selection of the analytic metaphor including in the findings of this article production. [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]

Background: People with Parkinson's disease (PD) do not always access specialist outpatient services in a timely manner in Ireland. The perspectives of people living with PD, relating to service access, are largely absent in the existing literature. Aim: To explore experiences of PD service access for people living with PD, using a qualitative approach. Methods: Purposive maximum variation sampling was used. Semi‐structured telephone interviews were conducted with 25 service users, including people with PD (n = 22) and supporting carers (n = 3). Informed consent was obtained from all participants. Interviews ranged in duration from 30 to 90 min. Data were managed in NVivo 12 and interpreted inductively using thematic analysis. The researchers were reflexive throughout the research process. The Consolidated Criteria for Reporting Qualitative Research checklist was employed to maximise transparency. Results: The findings highlight several key barriers to and facilitators of equitable and timely service access. Three key themes were identified comprising experiences of PD service access including 'geographical inequity', 'discriminatory practices', and 'public and private system deficits'. Together, these themes illustrate how a two‐tiered and under‐resourced health system lacks capacity, in terms of infrastructure and workforce, to meet PD needs for both public and private patients in Ireland. Conclusions: These findings point to problems for PD care, relating to (i) how the health system is structured, (ii) the under‐provision and under‐resourcing of specialist outpatient PD services, including medical, nursing, and multidisciplinary posts, and (iii) insufficient PD awareness education and training across health settings. The findings also show that telemedicine can provide opportunities for making access to certain aspects of PD care more flexible and equitable, but the feasibility and acceptability of technology‐enabled care must be assessed on an individual basis. Implications for policy, practice and research are discussed. Patient or Public Contribution: The design and conduct of this study were supported by an expert advisory group (EAG) of 10 co‐researchers living with PD. The EAG reviewed the interview schedule and the protocol for this study and provided detailed feedback from their perspective, to improve the methods, including the interview approach. The group also reviewed the findings of the study and contributed their insights on the meaning of the findings, which fed into this paper. [ABSTRACT FROM AUTHOR]

Introduction: Support staff within social care settings have expressed a need for resources to facilitate end‐of‐life care planning with people with intellectual disabilities. This study aimed to co‐design a preliminary toolkit of end‐of‐life care planning approaches and resources that can be implemented in adult social care services for people with intellectual disabilities. Methods: An adapted Experience‐Based Co‐Design process was applied to develop a toolkit for end‐of‐life care planning with people with intellectual disabilities. A co‐design group (the 'All Together Group') met six times from January to October 2023. The group comprised nine people with intellectual disabilities (including four researchers with intellectual disabilities, who also co‐facilitated the workshops), five family members, five intellectual disability support staff including two intellectual disability service managers, and five healthcare professionals. Results: The All Together Group tested resources for and approaches to end‐of‐life care planning with people with intellectual disabilities, based on findings from a scoping review and a focus group study. Easy‐read end‐of‐life care planning forms were deemed overwhelming and complicated, whilst visual and creative approaches were welcomed. Three new visual resources to support illness planning and funeral planning with people with intellectual disabilities were developed: (i) 'When I'm ill' thinking cards; (ii) 'Let's Talk About Funerals' conversation‐starter pictures; and (iii) 'My funeral' planning cards. These three resources, alongside three positively evaluated existing resources, were included in a new toolkit for end‐of‐life care planning with people with intellectual disabilities. Conclusion: Through an iterative, flexible, inclusive, and comprehensive co‐design process, a toolkit of three newly developed and three existing resources was created to facilitate support staff in doing end‐of‐life care planning with people with intellectual disabilities. Following a trialling process with support staff, the final toolkit was made freely available online. Patient or Public Contribution: The research team included four researchers with intellectual disabilities (A.C., D.J., L.J., and R.K.‐B). Researchers with intellectual disability have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings.Intellectual disability service provider representatives (M.W., N.P., and S.S.) were part of the co‐design group as well. Two of these representatives were also co‐applicants in the overall project (N.P. and S.S.). The co‐design group included people with intellectual disabilities, families, intellectual disability support staff and health and social care professionals. The study was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities families, intellectual disability researchers, representatives from intellectual disability organisations, and policymakers. Practitioner Points: To facilitate proper and timely end‐of‐life care planning, resources and approaches should be developed together with people with intellectual disabilities and support staff to make sure they are relevant, accessible, and workable in social care practice.People with intellectual disabilities prefer visual and creative approaches to end‐of‐life care planning rather than easy‐read plans and forms.Co‐producing an end‐of‐life care planning toolkit is an iterative, time‐consuming, and complex process, which requires a flexible approach, adapting to the feedback from and needs of co‐design group members. [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: There have been some concerns about the impact of temporary doctors, otherwise known as locums, on patient safety and the quality of care. Despite these concerns, research has paid little attention to the implications of locum working on patient experience. Methods: A qualitative semi‐structured interview study was conducted with 130 participants including locums, people working with locums and patients with experience of being seen or treated by locums. Analysis was conducted using a reflexive thematic approach and abductive analysis to position themes against wider knowledge. Results: Three main themes were constructed through analysis: (1) Awareness and disclosure; patients were not always aware if their doctor was a locum, and there was some debate about whether patients had a right to know, particularly if locum working presented quality and safety risks. (2) Continuity and accessibility of care; access was regarded as priority for acute conditions, but for long‐term or serious conditions, patients preferred to see a permanent doctor who knew their history, although it was acknowledged that locums could provide fresh perspectives. (3) Communication and practice; locums and patients described how consultations were approached differently when doctors worked as locums. Patients evaluated their interactions based on how safe they felt with practitioners. Conclusion: Patients reported that they were unlikely to have continuity of care with any doctors delivering care, regardless of their contractual status. Locums sometimes provided new perspectives on care which could be beneficial for patient outcomes, but for patients with long‐term, complex or serious conditions continuity of care was important, and these patients may avoid or delay seeking care when locums are the only available option. Patient or Public Contribution: Patients and carers were involved in our study from inception to dissemination. Our Patient and Public Involvement (PPI) forum was involved throughout project design and planning and gave us feedback and guidance on research materials and outputs (e.g., study protocol, participant information sheets, survey tools, interview schedules, emerging findings). Our PPI forum co‐produced our patient interview schedule, two members of our PPI forum led the patient focus groups and all were involved in analysis of patient interviews. Our PPI Chair was involved in the preparation of this manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Social prescribing offers a formal pathway of connecting patients in the health system with sources of support within the community to help improve their health and well‐being. Since its launch in March 2022, the Canadian Institute for Social Prescribing has acted as a collective impact network to identify, connect and build upon established social prescribing initiatives using a co‐design methodology. The institute received input from a participant advisory council, co‐design partners and several communities of interest groups. This study aimed to describe the perceptions of the Canadian Institute for Social Prescribing's role in advancing social prescribing using a co‐design approach and the barriers and facilitators to implementing social prescribing in Canada. Methods: We used a qualitative descriptive study design, document analysis, participant observation and semi‐structured individual interviews (n = 7) with members of the Canadian Institute for Social Prescribing co‐design group and the institute's leadership. We also analysed documents, field notes and transcripts using codebook thematic analysis. Results: Four themes were developed representing the facilitators of implementing the Canadian Institute for Social Prescribing to support social prescribing: Creating relational mechanisms (i.e., partnerships and connections), Bringing awareness to social prescribing and contributing to the evidence (i.e., values and beliefs), Addressing systemic conditions (i.e., having a common language for social prescribing and organizing the community health sector) and Enabling funding and policy to drive social prescribing initiatives (i.e., shifting evidence into policy and securing sustainable funding). Conclusion: Participants' reflections on the co‐design process demonstrated that the Canadian Institute for Social Prescribing development provided networking opportunities and shared resources relevant to social prescribing. Co‐design efforts also fostered relational and informational support, which laid the necessary groundwork in Canada to overcome the complex interplay between the macro‐ and micro‐level settings in which social prescribing is practiced. Patient or Public Contribution: The interviews and observations involved participants with lived experience of delivering, receiving or advocating for social prescribing. [ABSTRACT FROM AUTHOR]

Introduction: Co‐design in health research involves patient and public involvement and engagement (PPIE) in intervention or service design. Traditionally, co‐design is undertaken in‐person; however, exploring online delivery is warranted. PPIE in co‐design must be considered carefully, and assumptions that in‐person approaches will transition automatically to an online environment should be avoided. Currently, there are a lack of evidence‐informed approaches to facilitating co‐design online. This study aimed to develop and evaluate a framework for authentically adapting health research co‐design into an online environment. Materials and Methods: The initial framework was developed through a literature review, synthesis of in‐person co‐design principles, and alignment of online strategies. The framework was then applied to a co‐design project with 10 participants across relevant PPIE groups (end‐users [n = 4], clinicians [n = 2], coaches [n = 2] and clinician−researchers [n = 2]). Participants' experiences of the online co‐design process were evaluated via a mixed‐methods design using surveys and semi‐structured interviews. Evaluation data were analysed using descriptive statistics and reflexive thematic analysis to inform a revised framework. Results: The developed framework, Partnership‐focussed Principles‐driven Online co‐Design (P‐POD) was used to design eight 90 min online co‐design workshops. Evaluation data involved 46 survey responses, and eight participants were interviewed on project completion. Survey data indicated that the process was satisfying, engaging and adhered to the P‐POD framework. Themes derived from interview data describe a respectful and collaborative online culture, valuing of diverse perspectives and space for healthy debate, how power was perceived as being shared but not equal and multiple definitions of success within and beyond the process. A final, refined P‐POD framework is presented. Conclusion: With evaluation of the initial P‐POD framework showing evidence of adherence to co‐design principles, positive participant experiences and goal achievement for both the project and the participants, the refined P‐POD framework may be used and evaluated within future intervention or service design. Patient or Public Contribution: This study involved the participants (end‐users, clinicians and service providers) in the co‐design process described, interpretation of the results through member‐checking interview responses, assisting in development of the final framework and as co‐authors for this manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Culturally and linguistically diverse population groups disproportionately experience higher weight and other non–weight‐related discrimination in healthcare settings outside of their ancestral country. Little is known about the experiences of individuals with Arab heritage. This study aimed to qualitatively explore the intersectional weight‐related healthcare experiences of individuals of Arab heritage with higher weight in Australia. Methods: A general inductive enquiry approach was used. Purposive, convenience and snowball sampling was used to recruit individuals of Arab heritage residing in Australia. Individuals were invited to participate in an online semistructured interview. Interviews were recorded, transcribed and thematically analysed. Results: Fifteen participants took part in the study. Of these participants, 93% were female (n = 14), 80% were aged between 18 and 44 years (n = 12), 73% were university educated (n = 11), 53% were born outside of Australia (n = 8) and all were Muslim (n = 15). Four main themes were identified: (1) appearance‐based judgement, (2) generalised advice and assumptions, (3) cultural responsiveness and (4) healthcare system constraints. Conclusion: Individuals of Arab heritage with higher weight in Australia, namely, females, often perceive their healthcare experiences as dismissive of their cultural and religious needs and driven by causality assumptions around weight. It is crucial that care delivered encompasses cultural humility, is weight‐inclusive and acknowledges systemic constraints. Cultural safety training benchmarks, healthcare management reform and weight‐inclusive healthcare approaches are recommended to assist healthcare providers in delivering effective, holistic and culturally safe care. Patient or Public Contribution: Insights gained from conversations with Arab heritage community members with lived experiences regarding weight‐related healthcare encounters informed the study design and approach. [ABSTRACT FROM AUTHOR]

Objectives: Providing personal demographic information is routine practice in the United States, and yet, little is known about the impacts of this process. This study aims to examine the experiences and perspectives of Multiracial/ethnic adults in the United States when disclosing racial/ethnic identity. Methods: Seventeen semistructured interviews were conducted with adults identifying as Multiracial/ethnic. The Multiracial/ethnic identities of participants included Black or African American and White; Black or African American, American Indian or Alaska Native (AI/AN) and Hispanic or Latino; Black or African American and Hispanic or Latino; Black or African American and AI/AN; AI/AN and White and Asian, Native Hawaiian or Pacific Islander and White. Multiple participants reported identifying with multiple ethnic groups for any single broad category. Three identified as sexual minorities. Nine were Millennials; six were Gen X; one was Gen Z; one was Baby Boomer. Qualitative data were analyzed using staged hybrid inductive–deductive thematic analysis. Results: Disclosure of racial and ethnic identities presents a unique stressor for Multiracial/ethnic populations due to methods used to obtain data, perceived mismatch of identity and phenotype and exposure to prejudice. Social norms, constructs and movements impact the categories that a Multiracial/ethnic person indicates to external parties. Conclusions: The stress and negative feelings that Multiracial/ethnic adults face when identifying their race/ethnicity underscore the broader implications of standard demographic questions on feelings of inclusivity and visibility within a population. Patient or Public Contribution: Gathering data on individuals' racial and ethnic backgrounds is a standard practice, and yet, it can pose challenges for those who identify with multiple groups or do not see their identities reflected in the options provided. Such individuals may feel excluded or experience unfair treatment when disclosing their identity, leading to significant stress. As the frequency of this data collection increases, it is essential that the questions are posed empathetically and equitably, with a strong commitment to enhancing inclusivity throughout the process. [ABSTRACT FROM AUTHOR]

Introduction: Indigenous women experience high rates of family violence‐related head injuries. At present, lived experience accounts from Indigenous women are absent, which results in incomplete understandings and inadequate responses that have detrimental impacts on them and their families. The aim of this study was to gain insight into Indigenous women's personal and family perspectives regarding violence‐related traumatic brain injury (TBI), including impacts on life, as well as decision‐making processes about healthcare access and engagement. Methods: Purposeful sampling was used to complete semi‐structured interviews with 18 Indigenous women living in regional and remote Australia who had experienced TBI from family violence. The data from these interviews were augmented by data from interviews and focus groups with 28 community members, including family members or carers of Indigenous women living with TBI from family violence. Results: Three themes were conceptualised based on the data and research aims: interweaving of the past and the present—ways women experience brain injury; factors that inform decision‐making to access healthcare; and managing everyday changes that result from TBI from family violence. Indigenous women described living with a range of symptoms following repeated head injuries including problems with memory, cognition and concentration. A range of strategies to manage long‐term symptoms of TBI were used by Indigenous women and when they did seek healthcare, Indigenous women were required to navigate a range of barriers. Conclusions: The findings identify a range of gaps in healthcare and housing supports for Indigenous women with TBI from violence, highlighting the significant investment needed to develop responsive and appropriate pathways of care in regional and remote areas. A range of suggestions are discussed including development of a specialised workforce who can provide apppropriate follow‐up support, co‐designed concussion clinics and educational resources. TBI must also be a key aspect of policy and practice for services working with Indigenous women who have experienced violence to ensure appropriate responses are provided. Public or Patient Contribution: Indigenous women shared their views and experiences of TBI from family violence as well as decision‐making about accessing healthcare and managing TBI symptoms. As such, study participants provided public contributions to the research. [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 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]

Introduction: Despite significant advances in the management of lung cancer, patients continue to experience a high burden of unmet need impacting quality of life and outcomes of care. Achieving value‐based health care, where investment is targeted to services that deliver optimal experience and outcomes of care relative to the cost of delivering that care, requires attention to what people value most in meeting their needs. To date there has been little attention to what matters most to patients with lung cancer (i.e., what they value) as a component of achieving value‐based cancer care. This qualitative study was undertaken to investigate components of care valued by people with lung cancer in Australia. Methods: This qualitative study used semistructured interviews with 23 people with lung cancer. Participants were recruited using a purposive sampling strategy from two metropolitan tertiary public health services. Data collected included demographic characteristics and patient perspectives regarding their priority concerns and components of care identified as most valuable in meeting their needs. Demographic characteristics of participants were analysed descriptively, and qualitative data were analysed thematically using Interpretive Description. Results: Data analysis generated three key themes: valued components of care; benefits of receiving valued care components and consequences of missed opportunities for care. The components of care valued by patients reflect the core dimensions of cancer supportive care, with particular emphasis on ongoing opportunities for consultation (screening for unmet needs) and provision of person‐centred information. The facilitation of trust between patients and their treating team, as a consequence of having these valued components evident in their care, was identified as a key characteristic of value‐based care. Conclusions: This study has identified valued components of care described by people with lung cancer. Importantly, the care components identified have been proven to improve access to and coordination of care, and demonstrate the importance of integrating supportive care into care provision to achieve value‐based cancer care. Patient or Public Contribution: This study was informed by perspectives of lung cancer patients who participated in semistructured interviews. We acknowledge that this contribution does not meet the criteria for patient and public involvement in research as defined by Health Expectations, but this study forms part of a larger program of cancer supportive care work being undertaken by this team, where comprehensive consumer engagement and co‐design approaches are embedded in our work. [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]

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

Introduction: People being investigated for cancer face a wealth of complex information. Non‐specific symptom pathways (NSS) were implemented in the United Kingdom in 2017 to address the needs of patients experiencing symptoms such as weight loss, fatigue or general practitioner 'gut feeling', who did not have streamlined pathways for cancer investigation. This study aimed to explore the health literacy skills needed by patients being investigated for cancer in NSS pathways. Methods: This study employed ethnographic methods across four hospitals in England, including interviews, patient shadowing and clinical care observations, to examine NSS pathways for cancer diagnosis. We recruited 27 patients who were shadowed and interviewed during their care. We also interviewed 27 professionals. The analysis focused on patient communication and understanding, drawing on the concepts of personal and organisational health literacy. Results: Our analysis derived six themes highlighting the considerable informational demands of the NSS pathway. Patients were required to understand complex blood tests and investigations in primary care and often did not understand why they were referred. The NSS pathway itself was difficult to understand with only a minority of patients appreciating that multiple organs were being investigated for cancer. The process of progressing through the pathway was also difficult to understand, particularly around who was making decisions and what would happen next. The results of investigations were complex, often including incidental findings. Patients whose persistent symptoms were not explained were often unsure of what to do following discharge. Conclusion: We have identified several potential missed opportunities for organisations to support patient understanding of NSS pathways which could lead to inappropriate help‐seeking post‐discharge. Patients' difficulties in comprehending previous investigations and findings could result in delays, overtesting or inadequately targeted investigations, hindering the effective use of their medical history. Third, patients' limited understanding of their investigations and results may impede their ability to engage in patient safety by reporting potential care errors. Patient or Public Contribution: Patient, public, clinical and policy representatives contributed to developing the research objectives through a series of meetings and individual conversations in preparation for the study. We have held several events in which patients and the public have had an opportunity to give feedback about our results, such as local interest groups in North London and academic conferences. A clinical contributor (J.‐A. M.) was involved in data analysis and writing the manuscript. [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]

Background: Community health workers represent a critical part of the health outreach and services for migrant and seasonal farmworkers ('farmworkers') in rural areas of the United States. Purpose: We sought to identify adaptations to farmworker patient engagement and health outreach made by community health workers during the first 18 months of the COVID‐19 pandemic. Methods: In this qualitative study, we used semi‐structured interviews with community health workers from August 2020 to February 2022 (n = 21). Two coders used thematic analysis to identify three themes related to the experiences of community health workers in conducting health education and outreach to farmworkers prior to and following the onset of the pandemic. Findings: We found themes related to pre‐pandemic outreach efforts to provide health education resource sharing with farmworkers and pandemic‐related outreach efforts that included adoption of porch drops and distanced delivery of health education, adaptation of modes of health education and communication through technology and the internet, and taking on new roles related to COVID‐19. Finally, we identified changes that reverted after the pandemic or will continue as adaptations. Conclusions: Community health workers created practice‐based innovations in outreach in response to the COVID‐19 pandemic. These innovations included new COVID‐19 related roles and new modes of health education and outreach, including the use of digital resources. The changes developed for emergency use in COVID‐19, particularly related to internet and technology, have likely altered how community health workers conduct outreach in North Carolina going forward. Funders, community health worker training programs, and researchers should take note of these innovations. Patient or Public Contribution: Community health workers who typically come from patient populations and provide critical navigation and connection with the health care system advised on the design and creation of this research project, including serving on an advisory board. Two authors have experience working as community health workers. [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]

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]

Introduction: Parkinson's Disease (PD) is a complex neurodegenerative disease resulting in a wide range of motor and nonmotor symptoms for which the treatment regimen is often complex. People with Parkinson's (PwP) spend time daily on self‐care practices including self‐tracking signs and symptoms or seeking disease‐specific knowledge. Research suggests self‐care interventions yield promising care and health outputs for PwP, yet most research focuses on the provider perspective rather than that of those conducting the self‐care. This study explores the meaning of self‐care, disease‐specific knowledge, and self‐tracking from the perspective of PwP in Sweden. Methods: Qualitative data from three data sets were analyzed and compared using qualitative content analysis: one focus group on self‐care (n = 14), one free‐text survey on disease‐specific knowledge (n = 197) and one free‐text survey on self‐tracking (n = 33). Findings: The analysis resulted in three categories: illness‐related tasks, internal resources and external resources. Illness‐related tasks describe various tasks PwP carry out in self‐care, including lifestyle choices, treatments, and self‐tracking. Internal resources include personal knowledge/skills as well as mindsets which could facilitate or challenge completing these tasks. Finally, external resources include other PwP, literature, clinicians and other sources of disease‐specific knowledge. Self‐care was found to fluctuate between beneficial and burdensome depending on such resources. Conclusions: In conclusion, self‐care needs to be acknowledged and discussed more often in PD and other complex conditions. Future self‐care interventions should consider self‐tracking and disease‐specific knowledge as well as internal and external resources in their design and implementation. Patient or Public Contribution: A researcher with PD was actively involved in all phases of the research: study design, data collection and analysis, and preparing the manuscript. [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]

Background: Following stroke, a sense of well‐being is critical for quality of life. However, people living with stroke, and health professionals, suggest that well‐being is not sufficiently addressed within stroke services, contributing to persistent unmet needs. Knowing that systems and structures shape clinical practice, this study sought to understand how health professionals address well‐being, and to examine how the practice context influences care practice. Methods: Underpinned by Interpretive Description methodology, we interviewed 28 health professionals across multiple disciplines working in stroke services (acute and rehabilitation) throughout New Zealand. Data were analysed using applied tension analysis. Results: Health professionals are managing multiple lines of work in stroke care: biomedical work of investigation, intervention and prevention; clinical work of assessment, monitoring and treatment; and moving people through service. While participants reported working to support well‐being, this could be deprioritised amidst the time‐oriented pressures of the other lines of work that were privileged within services, rendering it unsupported and invisible. Conclusion: Stroke care is shaped by biomedical and organisational imperatives that privilege physical recovery and patient throughput. Health professionals are not provided with the knowledge, skills, time or culture of care that enable them to privilege well‐being within their work. This has implications for the well‐being of people with stroke, and the well‐being of health professionals. In making these discourses and culture visible, and tracing how these impact on clinical practice, we hope to provide insight into why well‐being work remains other to the 'core' work of stroke, and what needs to be considered if stroke services are to better support people's well‐being. Patient or Public Contributions: People with stroke, family members and people who provide support to people with stroke, and health professionals set priorities for this research. They advised on study conduct and have provided feedback on wider findings from the research. [ABSTRACT FROM AUTHOR]

Background: Long Covid is an emerging long‐term condition, with those affected raising concerns about lack of healthcare support. Objective: We conducted a qualitative study to identify facilitators and barriers to healthcare access for people with Long Covid, aiming to enhance our understanding of the specific nature of these barriers and how patient experiences may vary. Setting and Participants: In the context of the Symptoms, Trajectory, Inequalities and Management: Understanding Long‐COVID to Address and Transform Existing Integrated Care Pathways (STIMULATE‐ICP) Delphi study, a nationally distributed online survey was conducted. Eight patients and eight healthcare practitioners (HCP) were interviewed via telephone or video call. Framework analysis, sensitised by the candidacy theory, was used to identify barriers and facilitators over four levels of access to care. Results: Three themes were identified: (i) patients' efforts to navigate emerging pathways for Long Covid, (ii) the patient–HCP interaction and (iii) service resources and structural constraints. Barriers to specialist care included long waiting times, communication gaps across services and a lack of continuity in care. Facilitators included collaborative, patient‐centred approaches, patients' active role in their healthcare and blended approaches for appointments. The perspectives of both patients and HCPs largely aligned. Discussion: The candidacy framework was valuable in understanding the experiences of people with Long Covid seeking access to healthcare. Individuals perceived themselves as eligible for care, but they often encountered obstacles in obtaining the expected level of care or, in some cases, did not receive it at all. Our findings are discussed in the context of the candidacy model through multiple processes of identification, negotiation, permeability and appearances at health services. These themes seem to be especially important for the emerging new pathway model and are relevant to both primary and secondary care. Conclusions: This study highlights that despite these interviews being conducted two years after the start of the COVID‐19 pandemic, people with Long Covid still struggle to access healthcare, emphasising the ongoing need to provide equitable timely healthcare access for people with Long Covid. Patient or Public Contribution: People with Long Covid advised on all stages of this research. [ABSTRACT FROM AUTHOR]

Introduction: Problem‐solving skills (PSS) help to provide a systematic approach to dealing with and managing complex problems. The overall aim of this study was to assess the acceptability and feasibility of developing and adapting a prison‐based PSS workbook for adults within a medium‐ and low‐secure hospital. Method: We used the Medical Research Council framework in our participatory mixed methods study incorporating an adapted survey (to identify what types of problems people experience in secure hospitals), a series of three interactive workshops (to co‐produce two case study examples for a workbook) and we gathered feedback from patients and hospital staff on the acceptability and feasibility of the workbook. Data from the survey were used to inform the case study examples, and the feedback from patients and hospital staff was descriptively summarised and the results consolidated. Results: In total, 82 (51%) patients took part in the survey; 22 patients and 49 hospital staff provided feedback on the workbook. The survey results indicated that patients regularly experience problems while in the hospital. Patients reported problems relating to restrictions of freedom and boredom. The workshops produced two case studies for the workbooks, with mainly positive patient and staff feedback. More work is required to improve the visual representation of the characters in the case studies, the amount and content of the language and the mechanism of the intervention delivery. Conclusion: The adaptation process proved acceptable and feasible to both patients and staff. The co‐production methodology for the workbook and feedback from patients and staff was an effective way of iteratively refining the materials to ensure that they were both meaningful and acceptable to staff and patients. Subsequent work is required to develop the workbook and evaluate the feasibility of the intervention delivery, recruitment rates, uptake and adherence to the PSS using a randomised controlled trial. Patient or Public Contribution: At each stage of the project consultation with patients and/or hospital staff was involved. [ABSTRACT FROM AUTHOR]

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]

Introduction: Shared decision‐making intends to align care provision with individuals' preferences. However, the involvement of people living with dementia in decision‐making about their care varies. We aimed to co‐design the EMBED‐Care Framework, to enhance shared decision‐making between people affected by dementia and practitioners. Methods: A theory and evidence driven co‐design study was conducted, using iterative workshops, informed by a theoretical model of shared decision‐making and the EMBED‐Care Framework (the intervention) for person‐centred holistic palliative dementia care. The intervention incorporates a holistic outcome measure for assessment and review, linked with clinical decision‐support tools to support shared decision‐making. We drew on the Medical Research Council (MRC) guidance for developing and evaluating complex interventions. Participants included people with dementia of any type, current or bereaved family carers and practitioners. We recruited via established dementia groups and research and clinical networks. Data were analysed using reflexive thematic analysis to explore how and when the intervention could enhance communication and shared decision‐making, and the requirements for use, presented as a logic model. Results: Five co‐design workshops were undertaken with participants comprising people affected by dementia (n = 18) and practitioners (n = 36). Three themes were generated, comprising: (1) 'knowing the person and personalisation of care', involving the person with dementia and/or family carer identifying the needs of the person using a holistic assessment. (2) 'engaging and considering the perspectives of all involved in decision‐making' required listening to the person and the family to understand their priorities, and to manage multiple preferences. (3) 'Training and support activities' to use the Framework through use of animated videos to convey information, such as to understand the outcome measure used to assess symptoms. Conclusions: The intervention developed sought to enhance shared decision‐making with individuals affected by dementia and practitioners, through increased shared knowledge of individual priorities and choices for care and treatment. The workshops generated understanding to manage disagreements in determining priorities. Practitioners require face‐to‐face training on the intervention, and on communication to manage sensitive conversations about symptoms, care and treatment with individuals and their family. The findings informed the construction of a logic model to illustrate how the intervention is intended to work. [ABSTRACT FROM AUTHOR]

Introduction: There is a growing role for patients, family members and caregivers as consultants, collaborators and partners in health system settings in Canada. However, compensation for this role is not systematized. When offered, it varies in both type (e.g., one‐time honorarium, salary) and amount. Further, broad‐based views of patient partners on compensation are still unknown. We aimed to describe the types and frequency of compensation patient partners have been offered and their attitudes towards compensation. Methods: This study uses data from the Canadian Patient Partner Study (CPPS) survey. The survey gathered the experiences and perspectives of those who self‐identified as patient partners working across the Canadian health system. Three questions were about compensation, asking what types of compensation participants had been offered, if they had ever refused compensation, and whether they felt adequately compensated. The latter two questions included open‐text comments in addition to menu‐based and scaled response options. Basic frequencies were performed for all questions and open‐text comments were analyzed through inductive qualitative content analysis. Results: A total of 603 individuals participated in the CPPS survey. Most respondents were never or rarely offered salary (81%), honorarium (64%), gift cards (80%) or material gifts (93%) while half were offered conference registration and expenses at least sometimes. A total of 129 (26%) of 499 respondents reported refusing compensation. Of 511 respondents, half felt adequately compensated always or often, and half only sometimes, rarely or never. Open‐text comments revealed positive, ambivalent and negative attitudes towards compensation. Attitudes were framed by perceptions about their role, sentiments of giving back to the health system, feelings of acknowledgement, practical considerations, values of fairness and equity and accountability relationships. Conclusions: Our findings confirm that compensation is not standardized in Canada. Half of survey respondents routinely feel inadequately compensated. Patient partners have diverse views of what constitutes adequate compensation inclusive of personal considerations such as a preference for volunteering, and broader concerns such as promoting equity in patient partnership. Organizations should attempt to ensure that compensation practices are clear, transparent and attentive to patient partners' unique contexts. Patient Contribution: Two patient partners are members of the CPPS research team and have been fully engaged in all study phases from project conception to knowledge translation. They are co‐authors of this manuscript. The survey was co‐designed and pilot tested with patient partners and survey participants were patient partners. [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]

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]

Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0–16 years with intellectual disability admitted to two tertiary state‐wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability. Design, Setting and Participants: Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi‐structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses. Results: Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability‐specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child‐centred context. Conclusions: The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital. Patient and Public Contribution: Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews. [ABSTRACT FROM AUTHOR]

Introduction: Testicular cancer is the most common cancer in men aged 15–44 years in many countries. Most men with testicular cancer present with a lump. Testicular symptoms are more likely to occur secondary to benign diseases like epididymo‐orchitis, a common sexually transmitted infection. Gender and sexual minorities are at an increased risk of testicular diseases and health disparities. The aim of this study was to co‐design an inclusive community‐based campaign to promote testicular awareness. Methods: This study uses the World Café methodology. Participation was sought from Lesbian, Gay, Bisexual, Transgender and Queer+ friendly organisations, testicular cancer survivors, health policy makers, media and marketing experts and graphic designers. Participants engaged in three rounds of conversations to co‐design the campaign. Data were collected using drawing sheets, artefact cards, sticky notes, coloured markers and a voice recorder. Deductive thematic analysis was conducted. Results: Seventeen individuals participated in the study. Six themes emerged from the analysis as follows: (i) online communication; (ii) offline communication; (iii) behavioural targeting and education; (iv) campaign frequency and reach; (v) demographic segmentation; and (vi) campaign identity. The use of social media for campaign delivery featured strongly in all conversations. Participants also recommended offline communication using posters and radio/television advertisements to scale up the campaign and achieve wider reach. Advertisements to overcome embarrassment surrounding testicular health were particularly recommended. Participants emphasised that campaign delivery must be dynamic whilst ensuring that the health‐promoting messages are not diluted or lost. They stressed the importance of being inclusive and tailoring the campaign to different age groups, gender identities and sexual orientations. Conclusions: Study recommendations will be used to design and deliver the campaign. Future research will be needed to evaluate the feasibility, acceptability, cost and effect of the campaign on promoting testicular awareness and early detection of testicular diseases. Patient or Public Contribution: A participatory research approach was used to co‐design the campaign with members of Lesbian, Gay, Bisexual, Transgender and Queer+ (LGBTQ+) friendly organisations, LGBTQ+ student bodies, LGBTQ+ staff networks, LGBTQ+ sports clubs, men's health organisations, testicular cancer survivors, health policy makers, media and marketing experts and graphic designers. [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]

Background: Chronic conditions and multimorbidity, the presence of two or more chronic conditions, are increasingly common in older adults. Effective management of chronic conditions and multimorbidity in older adults requires a collaborative and person‐centred approach that considers the individual's goals, preferences and priorities. However, ensuring high‐quality personalised care for older adults with multimorbidity can be challenging due to the complexity of their care needs, limited time and a lack of patient preparation to discuss their personal goals and preferences with their healthcare team. Objective: To codesign a communication and goal‐setting tool, My Wellbeing Journal, to support personalised care planning for older adults with chronic conditions and multimorbidity. Design: We drew on an experience‐based codesign approach to develop My Wellbeing Journal. This article reports on the final end‐user feedback, which was collected via an online survey with older adults and their carers. Setting and Participants: Older adults with chronic conditions, multimorbidity and informal carers living in Australia. Personalised care planning was considered in the context of primary care. Results: A total of 88 participants completed the online survey. The survey focused on participants' feedback on the tool in terms of effectiveness, efficiency, satisfaction and errors encountered. This feedback resulted in modifications to My Wellbeing Journal, which can be used during clinical encounters to facilitate communication, goal setting and progress tracking. Discussion and Conclusions: Clinicians and carers can use the tool to guide discussions with older adults about their care planning and help them set realistic goals that are meaningful to them. The findings of this study could be used to inform the development of recommendations for healthcare providers to implement person‐centred, goal‐oriented care for older adults with chronic conditions and multimorbidity. Patient or Public Contribution: Older adults living with chronic conditions and multimorbidity and their carers have contributed to the development of a tool that has the potential to significantly enhance the experience of personalised care planning. Their direct involvement as collaborators has ensured that the tool is optimised to meet the standards of effectiveness and usability. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement (PPI) is an increasing priority in health‐related research and education. Attracting and supporting people from different demographic groups to give up their time and get involved is important to help ensure that all parts of society are empowered, represented and their voices heard in decisions that may affect their health and quality of life. Objectives: (1) To determine if a demographically diverse cross‐section of society would be interested in contributing to healthcare research and education. (2) To understand factors that can act as barriers and enablers to effective and diverse PPI. Method: PPI survey data was collected via engagement events, with the aim of scoping interest in PPI from a diverse public. A Focus Group study involving members of the public, academic and professional service staff, was then conducted to gain a deeper understanding around the barriers and enablers of diversity within PPI. Results: 71% of a diverse rich public indicated they would like to get involved in healthcare research and teaching. 76% of survey respondents indicated that they would be happy to share a personal or family experience of healthcare. The two biggest factors impacting on our cohort getting involved are' availability of time' and 'being aware of PPI opportunities'. These factors may disproportionally affect specific groups. Shared and individual PPI enablers and barriers were identified across all stakeholder groups within the Focus Group Study, as well as generic and novel factors that would impact on an institutions' ability to improve PPI diversity. Conclusion: These data points confirm a demographically diverse public's appetite to get involved in academic health research and teaching. This needs to be recognised and harnessed to ensure public contributor networks are representative of society. Equality Impact Assessments should be undertaken in relation to all PPI opportunities. There is a need to recognise the investment of time and resources required to build mutually beneficial relationships with diverse communities as well as the development of inclusive 'fit for purpose' PPI infrastructures to support the uptake of diverse PPI contributors. Public Contribution: This study involved members of the public responding to a short survey. Public contributors made up one of the three focus groups. The School of Medicine lead public contributor was also involved in the preparation of this manuscript. [ABSTRACT FROM AUTHOR]

Background: Indiscriminate use of laboratory blood testing in hospitals contributes to patient discomfort and healthcare waste. Patient engagement in low‐value healthcare can help reduce overuse. Understanding patient experience is necessary to identify opportunities to improve patient engagement with in‐hospital laboratory testing. Objectives: To understand patient experience with the process of in‐hospital laboratory blood testing. Methods: We used a qualitative study design via semistructured interviews conducted online or over the phone. Participants were adult patients or family members/caregivers (≥18 years of age) with a recent (within 12 months of interview) experience of hospitalization in Alberta or British Columbia, Canada. We identified participants through convenience sampling and conducted interviews between May 2021 and June 2022. We analysed transcripts using thematic content analysis. Recruitment was continued until code saturation was reached. Results: We interviewed 16 participants (13 patients, 1 family member and 2 caregivers). We identified four themes from patients' experiences of in‐hospital laboratory blood testing: (i) patients need information from healthcare teams about expected blood testing processes, (ii) blood draw processes should consider patient comfort and preferences, (iii) patients want information from their healthcare teams about the rationale and frequency of blood testing and (iv) patients need information on how their testing results affect their medical care. Conclusion: Current laboratory testing processes in hospitals do not facilitate shared decision‐making and patient engagement. Patient engagement with laboratory testing in hospitals requires an empathetic healthcare team that provides clear communication regarding testing procedures, rationale and results, while considering patient preferences and offering opportunities for involvement. Patient or Public Contribution: We interviewed 16 patients and/or family members/caregivers regarding their in‐hospital laboratory blood testing experiences. Our findings show correlations between patient needs and patient recommendations to make testing processes more patient‐centred. To bring a lived‐experience lens to this study, we formed a Patient Advisory Council with 9–11 patient research partners. Our patient research partners informed the research design, co‐developed participant recruitment strategies, co‐conducted data collection and informed the data analysis. Some of our patient research partners are co‐authors of this manuscript. [ABSTRACT FROM AUTHOR]

Background: Professional caregiving relationships are central to quality healthcare but are not always developed to a consistently high standard in clinical practice. Existing literature on what constitutes high‐quality relationships and how they should be developed is plagued by dyadic conceptualisations; discipline, context and condition‐specific research; and the absence of healthcare recipient and informal carer voices. This study aimed to address these issues by exploring how healthcare recipients and carers conceptualise good professional caregiving relationships regardless of discipline, care setting and clinical condition. Design: A qualitative story completion approach was used. Participants completed a story in response to a hypothetical stem that described a healthcare recipient (and, in some instances, carer) developing a good relationship with a new healthcare provider. Stories were analysed using reflexive thematic analysis. Participants: Participants were 35 healthcare recipients and 37 carers (n = 72 total). Results: Participants' stories were shaped by an overarching discourse that seeking help from new providers can elicit a range of unwanted emotions for both recipients and carers (e.g., anxiety, fear, dread). These unwanted emotions were experienced in relation to recipients' presenting health problems as well as their anticipated interactions with providers. Specifically, recipient and carer characters were fearful that providers would dismiss their concerns and judge them for deciding to seek help. Good relationships were seen to develop when healthcare providers worked to relieve or minimise these unwanted emotions, ensuring healthcare recipients and carers felt comfortable and at ease with the provider and the encounter. Participants positioned healthcare providers as primarily responsible for relieving recipients' and carers' unwanted emotions, which was achieved via four approaches: (1) easing into the encounter, (2) demonstrating interest in and understanding of recipients' presenting problems, (3) validating recipients' presenting problems and (4) enabling and respecting recipient choice. Participants' stories also routinely oriented to temporality, positioning relationships within recipients' and carers' wider care networks and biographical and temporal contexts. Conclusion: The findings expand our understanding of professional caregiving relationships beyond dyadic, static conceptualisations. Specifically, the findings suggest that high‐quality relationships might be achieved via a set of core healthcare provider behaviours that can be employed across disciplinary, context and condition‐specific boundaries. In turn, this provides a basis to support interprofessional education and multidisciplinary healthcare delivery, enabling different healthcare disciplines, specialties, and teams to work from the same understanding of what is required to develop high‐quality relationships. Patient or Public Contribution: The findings are based on stories from 72 healthcare recipient and carer participants, providing rich insight into their conceptualisations of high‐quality professional caregiving relationships. [ABSTRACT FROM AUTHOR]

Introduction: Caring for children and youth with special health care needs (CYSHCN) is a significant undertaking for families. While respite care is intended to address this burden, demand continues to exceed supply. Exploring the perspectives of respite service providers (SPs) and stakeholders (SKs) provides unique insight into families' needs and respite care systems. Methods: We conducted semistructured interviews with 41 respite care SPs and SKs across four Canadian provinces to ascertain perspectives on current and ideal respite care for families of CYSHCN. The analysis included delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes. The second‐level analysis involved applying themes and subthemes to cross‐functional process maps. Findings: Participants noted the critical, but sometimes absent role of Community Service Workers, who have the ability to support families accessing and navigating respite care systems. SPs and SKs identified current respite systems as operating in crisis mode. New findings suggest an ideal respite care system would incorporate advocacy for families, empower families and value CYSHCN, their families and respite workers. Conclusion: The evidence of unmet respite care needs of families of CYSHCN across Canada has long been available. Our findings identifying respite system challenges and solutions can be used by funders and policymakers for planning and enhancing resources, and by healthcare professionals, respite care providers and SKs to understand barriers and take action to improve respite outcomes to meet the respite needs of all families and CYSHCN. Patient or Public Contribution: The research team is composed of patients, researchers, clinicians and decision‐makers along with our Family Advisory Committee (FAC) composed of members of families of CYSHNC. The FAC was formed and met regularly with research team members, knowledge users and collaborators throughout the study to provide input on design, review themes and ensure findings are translated and disseminated in a meaningful way. [ABSTRACT FROM AUTHOR]