Health Expectations

Objectives The study aims to understand the return to work (RTW) needs of young and middle‐aged people who have experienced a stroke and to contribute to the development of supportive RTW services. Design A qualitative study employing the phenomenological method. Participants Eleven young and middle‐aged people who have experienced a stroke participated in the study. Methods Semi‐structured in‐depth interviews were conducted and analysed using Colaizzi's 7‐step method to identify and categorize the RTW needs of participants. Results The analysis delineated four overarching thematic categories of RTW needs among the participants: self‐management needs, emphasizing the regulation of symptoms, health maintenance and recovery planning; social support needs, highlighting the significance of workplace accommodations, professional medical guidance, and emotional encouragement from companions and family; the need for information related to returning to work, which includes accessing resources on rehabilitation opportunities, labour rights and professional consultation services; and personal development needs, focusing on fostering self‐worth, identifying growth opportunities and acquiring new skills to adapt to changing professional demands. Conclusion The diverse and comprehensive needs of young and middle‐aged people who have experienced a stroke underscore the importance of multifaceted support from healthcare professionals. This support should encompass medical, psychological, informational and skill‐development aspects and should involve enhanced communication and collaboration with relevant stakeholders to facilitate a successful RTW. Patient or Public Contribution This study was designed without direct involvement from patients or the public in the development of the research question, the design of the study, or the conduct of the research. This decision was informed by the specific focus on qualitative experiences and perceptions of stroke survivors regarding their RTW journey, which relied heavily on personal narratives and subjective accounts collected through individual interviews. However, the insights gained from these narratives have been crucial in shaping the research outcomes, emphasizing the patient‐centred approach to understanding RTW barriers and facilitators. Reporting Method This study followed the SRQR checklist for qualitative studies as its reporting method.

Background To deliver implementable, meaningful research and advance knowledge, different stakeholders need to be brought together regularly via a suitable platform or community of practice. The Liverpool Dementia & Ageing Research Forum, set up in 2019, is a public/professional community of practice, providing in‐person and remote events and activities to connect people living with dementia, unpaid carers, health and social care professionals, Third Sector representatives and commissioners. The aim of this study was to qualitatively explore the experiences and impacts of engaging with Forum events by different stakeholders. Methods Attendees of any Forum events were eligible to take part. We conducted remote semi‐structured interviews about the experiences and impacts of engaging with the Forum between November 2023 and April 2024. Anonymised transcripts were coded by three research team members, including a trained public advisor (unpaid carer), using inductive thematic analysis. Results Seventeen attendees participated in the study. These included people living with dementia, unpaid carers, Third Sector representatives, academics and health and social care providers. Four overarching themes were identified in the data: facilitated networking within and outside of personal expertise, improved knowledge and capacity, empowerment by having one's voice heard and diversity in stakeholders but not the background. The Forum events were utilised on a drop‐ in and ‐out basis for most attendees, often picking events that were of immediate interest to them, whilst some attended almost all events. Engaging with the Forum was found to strongly facilitate increased networking and building relationships, especially outside of stakeholder background, whilst diversity in backgrounds of attendees, such as ethnic diversity, was lacking. Conclusions This Community of Practice has successfully brought together diverse stakeholders to network and expand their relationships, and increased knowledge and capacity in different stakeholder groups. Whilst the Forum was considered inclusive, future outreach work needs to ensure that greater diversity in backgrounds and personal experiences is reflected in attendees, and that a continuous flow of new attendees joins. Patient and Public Involvement One unpaid carer was involved as a public advisor and was supported in coding two anonymised transcripts and interpreting the findings. They also helped codesign the semi‐structured topic guide.

Objectives Grounded in the Health Empowerment Model, which posits that health literacy and patient empowerment are intertwined yet distinct constructs, this study investigates how the interplay of these factors influences attitudes toward seeking professional psychological help in members of online communities for mental health (OCMHs). This while acknowledging the multidimensionality of patient empowerment, encompassing meaningfulness, competence, self‐determination, and impact. Design and Methods A cluster analysis of data gathered from 269 members of Italian‐speaking OCMHs on Facebook has been performed. Results Four profiles have been identified: dangerous self‐managers (11.2%), effective self‐managers (21.2%), disempowered (40.5%) and ambivalent empowered (27.1%). Clusters provided meaningful variations in help‐seeking attitudes, also when controlling for depression and anxiety severity, F3, 265 = 11.910, p < 0.001. Conclusions The findings provided further evidence of the multidimensionality of patient empowerment. Considering the results, we discussed potential interventions aimed at enhancing the quality of OCMHs, tailoring to the unique characteristics of each cluster. Patient or Public Contribution Administrators and moderators of mental health Facebook communities—whether expert‐led by mental health professionals or peers—played a key role in this study. They provided valuable insights during the questionnaire design process to ensure the questions were both relevant and appropriate for community members. These administrators and moderators also actively facilitated participant recruitment by creating and sharing posts, either video‐ or text‐based, on community homepages. Furthermore, after completing the questionnaire, participants were encouraged to comment on the Facebook posts where the survey link was shared, mentioning that they participated and inviting other members to take part. This approach aimed to foster a sense of involvement and further promoted the survey within the community.

Background Adults who live or work with children are an important source of support and are gateways to professional help when a child is experiencing a mental health problem. This study aimed to develop consensus‐based guidelines on how adults such as parents, educators or health professionals should approach a child aged 5–12 years to discuss concerns about the child's mental health and seek help. Methods A Delphi consensus method with three rounds was used. Experts were recruited from six countries to form three panels: health professionals, educators and people with lived experience (parents and carers, and young people with mental health problems). Statements to be rated were sourced from an online search of websites designed for adults who live or work with children. Further suggestions for statements came from panellists. Statements that reached 80% consensus across all panels were included in the guidelines. Results 132 participants completed the Round 1 survey, reducing to 54 by Round 3. A total of 248 statements were presented to panel members, with 151 being endorsed and included in the guidelines. Conclusions These guidelines represent the first recommendations developed for members of the public providing mental health first aid to children aged 5–12 years. Patient or Public Contribution Lived experience advocates (i.e. those with lived experience of a mental health problem in childhood and/or caregiving experience of raising a child with a mental health problem) were involved at two stages of this research: As part of the Advisory Group for the project and as expert panel members. Advisory Group members provided input into the conduct of the study and the content and design of the research outputs. Panel members provided their expertise to review every item to be included in the guidelines, proposed new items to be included, and reviewed and approved the finalised output documents.

Introduction Information on care home residents in England is captured in numerous data sets (care home records, General Practitioner records, community nursing, etc.) but little of this information is currently analysed in a way that is useful for care providers, current or future residents and families or that realises the potential of data to enhance care provision. The DACHA study aimed to develop and test a minimum data set (MDS) which would bring together data that is useful to support and improve care and facilitate research. It is that utility that underscores the importance of meaningful public involvement (PI) with the range of groups of people affected. This paper analyses the involvement of family members of care home residents and care home staff through a PI Panel. Objectives The objective for the PI activities was to consistently bring the knowledge and perspectives of family members and care home staff to influence the ongoing design and conduct of the DACHA study. Methods The bespoke methods of PI included a dedicated PI team and a PI Panel of public contributors. Meetings were recorded and minutes agreed, resulting actions were tracked and reflections on the PI recorded. A democratic, social relations approach was used to frame the analysis. Results A PI panel met 17 times. All meetings included both family members and care home staff. Analysis of the records and reflections developed the following themes about the operation of the PI: deepened understanding of the data environment in care homes; Influence on the pilot MDS; aiming for best research practices with care homes; personal/professional development for PI members; expectations of the project. Learning points for future research projects are developed. Conclusions PI shaped the design and conduct of the DACHA study, grounding it in the needs and perspectives of people using and providing social care. Data research has a huge responsibility to accurately incorporate relevant public perspectives. There is an implicit assumption that records and data are objective and ‘speak for themselves’ however there can be unintended consequences from introduction of new data requirements in practice. Patient or Public Contribution Public contributors to this manuscript include family members of older people living in care homes and staff of care homes. The wider study also involved as the public, older people living in care homes. Public contributors helped develop the project, contributed throughout the conduct of the study and some chose to be involved in preparing this manuscript.

Background Health news refers to media coverage that informs the public about health‐related issues, policies and healthcare systems, shaping public perception and understanding. While prior research has examined media's impact on public health behaviour, limited studies have focused on how perceptions of health news affect attitudes towards healthcare professionals, especially in the context of violence against them. This study addresses this gap, examining the mediating role perception of health news on the relationship between distrust in healthcare systems and intentions to use violence against healthcare professionals. Aim This research aims to explore how the perception of health news influences the relationship between distrust in healthcare systems and the intention to use violence against healthcare professionals. Methodology A survey was conducted with 693 participants over the age of 18 who had received healthcare services in the last year. The study utilized an intermediary model to assess the role of perception of health news in the relationship between distrust in the healthcare system and the intention to use violence against healthcare professionals. Results The findings indicate a positive correlation between distrust in healthcare systems and the intention to use violence against healthcare professionals. Additionally, the perception of health news was found to significantly mediate this relationship. Conclusion The study concludes that negative perceptions of healthcare systems, exacerbated by the portrayal of health news, can escalate the risk of violence against healthcare professionals. Patient or Public Contribution There was no direct patient or public involvement in the design, conduct, reporting, or dissemination plans of this research. The study primarily relied on data collected through surveys and questionnaires administered to participants. Although the research addresses issues pertinent to the public and healthcare professionals, such as violence against healthcare professionals and the role of media in shaping public perceptions, the public's role was limited to responding to the survey. The findings and implications of this research are intended to benefit the public and healthcare community by informing future strategies and interventions, but the public did not actively contribute to the research process itself.

Background and Objective Migrant and refugee women, families, and their children can experience significant language, cultural, and psychosocial barriers to engage with child and family services. Integrated child and family health Hubs are increasingly promoted as a potential solution to address access barriers; however, there is scant literature on how to best implement them with migrant and refugee populations. Our aim was to explore with service providers and consumers the barriers, enablers, and experiences with Hubs and the resulting building blocks required for acceptable Hub implementation for migrant and refugee families. Design, Setting and Participants This project was undertaken in Sydney, New South Wales, in communities characterised by cultural diversity. In this qualitative study, we used semi‐structured interviews guided by the consolidated framework for implementation research, with service providers from health and social services (32 participants) and migrant and refugee parents (14 parents) of children who had accessed Hubs. Research and Discussion Our initial qualitative data themes were developed into step‐by‐step building blocks, representing a way to address contextual determinants to establish and sustain a Hub that can support migrant and refugee families. These include the setting‐up phase activities of buy‐in and partnership development, which outlines mechanisms to foster collective action and collaboration between health and social services. Following this, our orientation model articulates the need to establish Hub coordination and navigation, activities that enhance a Hub's relevance for migrant and refugee families and ongoing integration mechanisms, such as engagement of same‐language general practitioners. This is the first study to explore the building blocks required for acceptable Hub implementation to meet the needs of migrant and refugee families in the first 2000 days of a child's life—a critical time to optimise child development and health. Patient or Public Contribution The research questions were developed based on qualitative research undertaken with Hub participants, community members, and service providers. The original investigator team had a consumer representative who has since relocated and consultation was undertaken with local Hub partner services. The researchers also consulted multicultural health services, including cultural support workers, to ensure research materials were culturally nuanced. Patients or participants have not directly been involved in the current study design. Clinical Trial Registration This trial was registered with the Australian New Zealand Clinical Trials (ACTRN12621001088831).

Background Seasonal migrant farmworkers (SMF) make up a significant part of Spain's agricultural labour force. Due to precarious labour conditions, housing insecurity and factors related to migration, SMF are at risk of specific health issues and occupational accidents. In addition, migrants in Spain face barriers when accessing healthcare services. This study explores factors that influence the acceptability of healthcare services among SMF in Spain from the point of view of professionals working with this population. Methods Semi‐structured interviews were conducted among 92 professionals working with SMF in four regions of Spain, including NGO workers, healthcare workers, employees of worker unions, public social services and governmental institutions. A thematic content analysis was performed using Atlas.ti. Results Professionals identified several barriers and facilitators that influence the acceptability of healthcare services among SMF. The main identified barriers were language, different perceptions of health and healthcare between SMF and Spanish professionals, a limited understanding of the Spanish healthcare system, and precarious working and living conditions. The main identified facilitators were professionals taking time to explain healthcare procedures and rights to SMF and support and information from friends, family and other community members. Discussion and Conclusion To overcome barriers, the use of translational services and cultural mediators should be increased. In addition, educational interventions are needed for migrants to better understand the Spanish healthcare system and for healthcare workers to provide culturally appropriate care to migrant patients. Finally, it needs to be considered that inequalities in health and healthcare between SMF and the Spanish native‐born population reach beyond healthcare institutions. They are rooted in structural factors, which include their living and working conditions, social exclusion, and discrimination. Patient or Public Contribution As this study, which is part of a bigger project, aimed to focus on healthcare access mainly from the healthcare system perspective, patients and service users were not involved in this part. Another sub‐study within the project will focus on the experience of SMF. Caregivers were included as study participants and despite not having been directly included in the study design, the open‐ended questions used in this study allowed them to bring up the topics they considered important in the context of this study.

Background Appropriate support for the health of children with an intellectual disability by parents and healthcare professionals is pivotal, given the high risk of chronic conditions. However, there is limited research that has collected important insights from parents on their learnings for supporting their child's evolving healthcare needs. Aim This study focuses on parents' experiences and learnings from managing and supporting the health of their child with intellectual disability. It aims to understand what parents wish they had known earlier, the essential knowledge and skills they needed to manage their child's health. Method A qualitative study was carried out using semi‐structured interviews with 21 parents of adolescents and young people with intellectual disability. The children had chronic health conditions that fell into six health domains, including (1) difficulties with movement and physical activity, (2) epilepsy, (3) dental care, (4) respiratory health and infection, (5) behaviour, mental health or sleep and (6) gastrointestinal health. Results Thematic analysis yielded five themes: (1) optimising mutual engagement between healthcare professionals and families; (2) planning and practising effective healthcare; (3) having the right information at the right time; (4) finding the support that was needed and (5) navigating healthcare and disability systems. Over time, parents developed specific skills and knowledge for managing their child's health effectively. Some parents expressed regret for not seeking support and information about their child's health conditions earlier. Parents described how mutual engagement between healthcare professionals and parents optimised the management of their child's healthcare. Conclusion The study found that managing the health of a child with intellectual disability is complex. The themes were consistent across health comorbidities, indicating important common experiences. The themes aligned with conceptualisations of health literacy, suggesting that improving health literacy skills can help parents better manage their children's health conditions. Patient or Public Contribution We developed the project in consultation with members of the public who have lived experience of parenting a child with intellectual disability. They commented on the study aims, interview schedule, participant recruitment and provided feedback on the analysis and discussion.

Introduction Physical and emotional loss from amputation and associated physical disability are associated with adverse physical and psychological experiences. However, little research, within the Ghanaian context, has focused on the impact of amputation on the well‐being of amputees and their caregivers and the coping strategies they use to mitigate challenges experienced. Therefore, the present study explored the impact of amputation on the well‐being of amputees and caregivers, and the coping strategies they employ to manage distress associated with amputation and caregiving. Methods The aim of this present study was explored using a qualitative descriptive design. Twenty (20) participants (comprising 10 amputees and 10 caregivers) responded to a semi‐structured interview guide. Results Findings show that whereas amputees experienced phantom limb sensation and loss of job, caregivers reported economic hardship and fear. Though stress was a common experience, the source of stress was different for amputees and caregivers. Regarding coping, whereas amputees used social distancing, social reference and social support to cope with their traumatic ordeal, caregivers simply coped by encouraging themselves. Both amputees and caregivers used religious coping. Conclusion Amputees and their caregivers experience varied stressors yet whereas the amputees get the needed support to deal with their predicament, caregivers lack adequate support. Patient or Public Contribution The findings underscore the need for diverse support systems and psychoeducation on adaptive coping strategies for amputees and caregivers.

Objective We aimed to understand what patients, caregivers and clinicians identified as the most important information from their audio‐recorded clinic visits and why. Methods We recruited patients, caregivers and clinicians from primary and speciality care clinics at an academic medical centre in New Hampshire, U.S. Participants reviewed a recording or transcript of their visit, identifying meaningful moments and the reasons why. Two researchers performed a summative content analysis of the data. Results Sixteen patients, four with caregivers, from six clinicians participated. Patients, caregivers and clinicians identified a median of 7.5 (3–20), 12.5 (6–50) and 18 (4–31) meaningful visit moments, respectively. Moments identified were similar across stakeholders, including patient education, symptoms, recommendations and medications. Four themes emerged as a rationale for finding visit information meaningful: providing and receiving information, sharing the patient experience, forming a care plan, and providing emotional support. Clinicians rarely identified patient statements as important. Conclusion There was considerable agreement between patients, clinicians and caregivers regarding visit information that is most valuable. Patient contributions may be undervalued by clinicians. Practice Implications These findings can be used to improve patient‐centred visit communication by focusing visit summaries and decision support on information of the most value to participants.

Background A lack of social support contributes to women from culturally diverse backgrounds experiencing higher rates of perinatal distress and lower rates of service engagement. Objective/Methods This participatory action research study aimed to understand what a culturally appropriate social intervention may look like for pregnant women from culturally diverse backgrounds. Field notes and qualitative transcripts were descriptively synthesised. Results Challenges of engaging with culturally diverse communities in the context of perinatal health services were identified. Cultural factors and practices were seen to impact upon service engagement, with parents more likely to seek support outside of health settings. Community members expressed frustrations with the lack of deep cultural sensitivity in the structure and delivery of health services. Clear definitions in scope and aim of any intervention were indicated, before further community engagement. Discussion Challenges in engaging individuals and services from diverse communities highlighted the risks of ideas embedded in oversimplified understandings based on cultural stereotypes and assumptions of homogeneity of experiences at the intersection of cultural diversity, perinatal distress and health services. Conclusions Deep cultural sensitivity requires an understanding of how members of population groups perceive and understand health and wellbeing to directly inform the development of any intervention. Attempting to design a culturally sensitive intervention for socially isolated and culturally diverse parents within mainstream health services, led to a paradoxical tension between attempting to address needs in culturally insensitive ways or not attempting to address the needs at all. Patient or Public Contribution Members of the public and people who identified as having lived experience of social isolation, cultural diversity or mental distress were engaged in the community consultation phase of the study.

Introduction Medical education typically focuses on the dyadic interaction between patient and physician. However, there is another significant presence in the room that can also impact the patient's health outcomes: caregivers. This topic has been relatively underexplored until now, and there is insufficient information available regarding situations in different cultures. In this study, we aimed to separately examine the characteristics of patients that influence the frequency of being accompanied and those that affect patients' preferences regarding the presence of a companion. Methods This cross‐sectional study was conducted in family medicine clinic of a tertiary hospital. During a period of 15 days, a total of 285 patients who visited the clinic were administered the questionnaire face‐to‐face. Two logistic regression models were used for dependent variables of “actual” and “desired” situations of admitting to healthcare service with companion. Results Of the participants, 167 (58.6%) were female, and the mean age was 36.8 ± 16.2 The sole significant factor, influencing actual visits to be occurred with a companion, was the solution for transportation issues (odds ratio [OR]: 26.25). It was found that unmarried individuals (single/divorced/widowed) (OR: 5.47), those with higher income (OR: 1.84), and older individuals (OR: 1.04) had a higher tendency to prefer visiting the clinic with companion while female are as opposite (OR: 0.50). Anxiety, perceived social support, and health literacy weren't associated with actual situation or desire to have companion. Conclusion Patients have companions to address tangible issues. However, different factors may influence the desire to have a companion. There is a large group of individuals who, are accompanied at clinic visits against their wishes, indicating a conflict between being accompanied and the desire for one. Patient or Public Contribution Our study was inspired by the unsolicited comments of patients made about their companions during clinical visits. Additionally, community provided valuable feedback during the pilot application phase, particularly in the development of the data form.

Background The Human Immunodeficiency Virus (HIV) has a major impact on a person's social and personal lives, affecting both physical and mental health. To meet the global 95‐95‐95 target, it is essential to understand and address the multi‐level challenges to improve the continuum of care for persons living with HIV (PLWH). This study delves into the care‐seeking pathways and barriers encountered by PLWH residing in rural areas of Nepal, shedding light on the complexities of accessing and navigating the continuum of care. Design This study was designed as a qualitative thematic study that consisted of in‐depth interviews among 21 PLWH and key‐informant interviews among four health service providers in rural districts of Koshi province in Nepal. Semi‐structured interview guidelines were used to ensure consistency in the data collection process, followed by Inductive Coding to identify and categorize the data into codes. Subsequently, sub‐themes and themes were developed, and manifest analysis was conducted to analyze the data. The findings of the study are presented in this paper in the form of excerpts. Results The multilevel barriers to HIV care continuum included (i) socio‐cultural barriers such as stigma, discrimination, fear of disclosure, and heavy reliance on traditional healers; (ii) socio‐economic barriers such as poverty, limited access to health insurance, low health literacy and the exclusion of PLWH under Social Security Act; (iii) fatalistic lifestyles characterized by heavy alcohol consumption, and poor adherence to antiretroviral therapy and (iv) health system‐related barriers such as mistreatment by healthcare providers, and long distances to ART centers. Conclusions There is a need to expand services beyond treatment, including community‐focused awareness and sensitization, programs led by community‐based organization, economic empowerment and inclusion of PLWH under social security mechanisms in rural areas for HIV continuum of care. Patient and Public Contribution During the study design phase, two PLWH and two service providers were consulted to discuss the research gap, understand the current practices and discuss the data collection tools and their content. Similarly, four service providers supported implementation of the study and were also consulted to interpret the underlying meaning of the data. One service provider also contributed to the manuscript development process. PLWH and the service providers were also the study participants. The findings of the study are grounded in the data/information provided during the data collection phase, thus meaningfully contributing to this study.

Background Health service leaders in Thailand face substantial challenges in addressing the needs of a growing population of patients with moderate to severe Chronic Heart Failure (CHF) who require acute care management and ongoing supportive care in the community. The large number of CHF patients requiring readmission for high‐level care places a significant burden on healthcare services. Methods The design thinking model proposed by the Hasso‐Plattner Institute of Design at Stanford University underpinned an approach to developing a co‐designed, tailored, culturally acceptable model of chronic care for people with CHF. One consumer, 16 clinicians, and two organisational leaders participated in a codesign workshop that included three activities. The purpose of each activity was to (i) define the problem, (ii) brainstorm possible solutions and (iii) develop a prototype solution. The codesign workshop was one phase of a four‐phase codesign project. Data collected included physical data such as sticky notes and storyboards and audio recordings of codesign group discussions. Data were analyses using content analysis. Results Nine prototype storyboards aimed at enhancing continuity of care for CHF patients emerged from the workshop activities. The proposed solutions focused on improving consumer access to evidence‐based information, multidisciplinary expertise and ongoing community support. Participants discussed and evaluated the viability and feasibility of each prototype before reaching a final decision on an optimal model. The preferred model was a nurse‐led case management service supported by a multidisciplinary team. Conclusion Key stakeholders identified the importance of moving from a short‐term model of care to an integrated, multidisciplinary approach to providing long‐term support in the community. The final agreed prototype of a CHF Nurse Case Management service supported by a multidisciplinary team with a focus on community outreach addressed the key concerns of participants and was considered a feasible approach to developing a CHF chronic care service for the community in urban Bangkok, Thailand. Patient or Public Contribution The process of codesign involved the engagement and participation of individuals with CHF, clinicians and organisational leaders throughout the research process.

Objective Chronic musculoskeletal pain (CMSP) is frequent in chronic diseases, decreasing the quality of life of these patients. In a survey conducted in Belgium in 2019, chronic pain was named by patients as the main factor of complexity in their lives. The objective of our research was to provide elements to understand why and how CMSP contributes to the complexity of these people's lives. Design Qualitative study through semi‐structured interviews. Setting The study was conducted in Belgium with French‐speaking individuals. The interviews took place at the university, in a teaching hospital, in private clinics or in individuals' homes. Participants We included 24 individuals with CMSP and living complex situations. The recruitment was made in two phases in agreement with the grounded theory methodology and to reach the saturation of ideas. Results The complexity experienced by people with CMSP turns around the notion of recognition, which can be broken down into 3 spheres: intimate, social and legal. The poor quality of listening and the fragmented vision of aid and care professionals generate a feeling of loneliness and incomprehension in the face of illness. The unsuitability of the world of work, the opacity of protocols and the attitude of medical experts reveal inequalities in access to recognition for immigrants and people of low socio‐professional status. Conclusion The complexity of the situations experienced could be reduced by implementing health policies that facilitate: legal recognition of this illness; adaptability in the workplace; raising awareness about pain mechanisms; the risks of stigmatization and the need of interprofessional collaboration. Patient or Public Contribution Patients and the public participated in the dissemination of our research and were able to help us with recruitment through social networks (call for participation published on Facebook by the association ‘Aidants proches’) or word of mouth. The presentation of preliminary results at conferences as well as the publication of a public article in Belgian journals (http://www.lejournaldumedecin.com/magazine/douleurs-chroniques-un-veritable-parcours-du-combattant/article-normal-63055.html?cookie_check=1671467500%22) facilitated the contact with the public.

Introduction The transition from paediatric to adult health care (i.e., ‘health care transition’) poses many challenges for youth with medical complexity (YMC) and their families. YMC need specific approaches to supporting transition, tailored to individual youth and family contexts. In this study, we examine the contextual factors influencing families' transition experiences and describe their recommendations for improving the experience. Methods We conducted a qualitative explanatory case study in Ontario, Canada. We completed 21 interviews with 17 participants (11 mothers, 2 fathers, 2 YMC, 2 siblings) from 11 families of YMC. Six YMC (55%) were under 18 years of age (pre‐transfer) and five (45%) were aged 18 years and older (post‐transfer). Analytic approaches included reflexive thematic analysis and directed content analysis. Findings Participants described how the interplay of personal and environmental factors impacted their transition experiences. Recommendations for health care providers focused on providing instrumental and psychological support, advocacy and care continuity. Families expressed a need for better access to information and support from primary care providers. System‐level recommendations included streamlining transition processes, improving adult health care services and expanding community supports. A socioecological model is presented to guide health care providers and decision makers in assessing and tackling the challenges faced by YMC and their families during transition. Conclusion Findings highlight the complexity and scope of issues surrounding the transition to adult care for YMC in Ontario, with evidence of major gaps in services across multiple sectors and settings. Ongoing efforts are needed to move evidence into practice and advocate for more equitable and responsive care for YMC during the transition and beyond. Patient or Public Contribution The research team included two parent co‐researchers with lived experience, who contributed to protocol refinement, funding acquisition, recruitment, findings interpretation and ongoing knowledge translation efforts.

Background User organizations for people with disabilities in Norway work for social equality and participation, and quality of health services for people with disabilities, chronic illnesses and reduced functional capacity. Consideration of the experiences from user representatives is necessary when determining the quality and appropriateness of the rehabilitation services. Rehabilitation services constitute the provision and delivery of intangible products to maintain or improve functioning in individual patients or patient groups. Rehabilitation services can be characterized at the policy (macro), organizational (meso) and individual (micro) levels. Objectives To explore user representatives' perspectives on rehabilitation service provision and organization and how they experience the influence they exert. Methods Focus group interviews with 14 representatives nominated from 11 user organizations in Norway conducted in 2021. Two online focus groups using a semi‐structured interview guide were conducted. Data analysis was performed according to Braun and Clarke's thematic data analysis. Results Six core themes were developed when analyzing the participants' experiences and opinions regarding rehabilitation services. The themes were inter‐connected and addressed perspectives on Access to services, Integration of care, Rehabilitation team, Person centeredness, System and governance and Modes of user representation and contribution. Conclusion The user representatives revealed tension and complexity influencing the provision and organization of rehabilitation services from individual access to health policy and regulation. Empowering user representatives through training was important to fight tokenism. Filling the role of a user representative at the meso level requires the integration of personal and peer experiences at the micro level, and knowledge of health policy regulations at the macro level. Patient or Public Contribution The Norwegian Federation of Organisations of Persons with Disabilities recruited user representatives in this study. The user representatives participated in the assessment and discussion of the results of the study. The results were presented for discussion to the User panel at the Research Centre for Habilitation and Rehabilitation Models & Services (CHARM) at the University of Oslo.

Introduction In this viewpoint we highlight a gap in the literature relating to the involvement of professional stakeholders in healthcare evaluation research. Method Using the Dementia—PersonAlised Care Team (D‐PACT) project as an example, we illustrate how professional stakeholder work can serve various functions, from understanding commissioning and policy context to contributing to detail of intervention components. Outcome We argue that identifying these project‐specific functions can help researchers to effectively plan when, how and for whom they will engage in professional stakeholder work across the course of an evaluation. In addition, we call for further evidence‐based guidance and sufficient allocation of resources (provided by those funding research projects) to support effective stakeholder work. Conclusion Such support will not only enhance evaluation findings but also promote continued learning on best practice for professional stakeholder work. Patient or Public Contribution Public and patient involvement contributors were involved in the main D‐PACT study design, development of data collection tools and interpretation of study findings.

Background Pain is prevalent across the lifespan and contributes to significant societal and economic burdens. The public often holds misconceptions about pain and pain management. Despite this, there are no well‐resourced public health initiatives delivering information about pain and pain management to the public. Adolescence is an opportune time to educate the public about pain. Health interventions designed for adolescents should reflect their understanding, beliefs and experiences; however, no studies explore this in non‐clinical populations of adolescents. We aimed to explore adolescents' understanding, experiences and beliefs about pain to inform the development of a school‐based pain education module. Methods We conducted semi‐structured interviews with 25 adolescents in grades 7–10 (ages 11–16) attending Australian secondary schools. Interviews were conducted on video‐conferencing software, audio‐recorded, transcribed verbatim and analysed using Framework Analysis. Results We generated three themes: (i) physical and psychological pain are distinct, (ii) psychological and contextual factors influence how someone feels or reacts to physical pain and (iii) physical pain matters if it impacts participation in meaningful activities. Conclusions Adolescents' understanding and beliefs about pain do not always align with current scientific understanding of pain. School‐based pain education programmes should target these areas of misalignment. Addressing adolescents' misconceptions about pain through pain education could also create a more supportive school environment for adolescents experiencing pain. Interactive approaches to learning, such as discussions that encourage adolescents to reflect on their experiences of pain, could be a promising avenue for pain education. Patient or Public Contribution Two co‐authors are part of the study population and contributed to the study design and analysis. Their input ensured the interview guide was appropriate for the target population and provided an adolescent perspective on the findings. They were remunerated for their time in accordance with consumer involvement guidelines.

Background Most people with mental ill health want to be involved in decision‐making about their care, many mental health professionals now recognise the importance of this (at least in‐principle) and the Convention on the Rights of Persons with Disabilities enshrines the ethical imperative to support people in making their own treatment decisions. Nonetheless, there are widespread reports of people with mental ill health being excluded from decision‐making about their treatment in practice. Objectives We conducted a systematic review of quantitative, qualitative and mixed method research on interventions to improve opportunities for the involvement of mental healthcare service users in treatment planning. We sought to consolidate and understand the evidence on the outcomes of shared and supported decision‐making for people with mental ill health. Methods Seven databases were searched and 5137 articles were screened. Articles were included if they reported on an intervention for adult service users, were published between 2008 and October 2023 and were in English. Evidence in the 140 included articles was synthesised according to the JBI guidance on Mixed Methods Systematic Reviews. Results There was evidence relating to the effects of these interventions on a range of outcomes for people with mental ill health, including on: suicidal crisis, symptoms, recovery, hospital admissions, treatment engagement and on the use of coercion by health professionals. There is favourable evidence for these types of interventions in improving some outcomes for people with mental ill health, more so than treatment‐as‐usual. For other outcomes, the evidence is preliminary but promising. Some areas for caution are also identified. Conclusions The review indicates that when the involvement of people with mental ill health in treatment planning is supported, there can be improved outcomes for their health and care. Areas for future research are highlighted. Patient or Public Contribution This systematic review has been guided at all stages by a researcher with experience of mental health service use, who does not wish to be identified at this point in time. The findings may inform organisations, researchers and practitioners on the benefits of implementing supported decision‐making, for the greater involvement of people with mental ill health in their healthcare.

Introduction Prediction models are increasingly being used to guide clinical decision making in primary care. There is a lack of evidence exploring the views of patients and general practitioners (GPs) in primary care around their use and implementation. We aimed to better understand the perspectives of GPs and people with lived experience of depression around the use of prediction models and communication of risk in primary care. Methods Qualitative methods were used. Data were generated over 6 months (April to October 2022) through semi‐structured interviews with 23 people with lived experience of depression and 22 GPs. A multidisciplinary research team and Patient Advisory Group were involved throughout the study. Data were analysed inductively using thematic analysis. Results GPs describe using prediction models in consultations only when the models are either perceived to be useful (e.g., because they help address an important clinical problem) or if GPs feel compelled to use them to meet financial or contractual targets. These two situations are not mutually exclusive, but if neither criterion is met, a model is unlikely to be used in practice. People with lived experience of depression and GPs reported that communication of model outputs should involve a combination of risk categories, numerical information and visualisations, with discussions being tailored to the individual patients involved. Risk prediction in a mental health context was perceived to be more challenging than for physical health conditions. Conclusion Clinical prediction models are used in practice but thought must be given at the study development stage to how results will be presented and discussed with patients. Meaningful, embedded public and patient involvement and engagement are recommended when developing or implementing clinical prediction models. Patient or Public Contribution We used a combination of embedded consultation and collaboration/co‐production in our approach to public and patient involvement in this study. A Patient Advisory Group made up of people with lived experience of depression were involved from study conception and contributed to study design, participant recruitment, interpretation of findings and dissemination (including in the preparation of this manuscript).

Background Few pregnant women in France wrote birth plans as in many other countries. The literature stresses the heterogeneity of birth plan content, which limits the utility of assessing the effects of birth plans on women's experience of childbirth. This study aimed to obtain a French national consensus on the structure and content of birth plans. Methods A multidisciplinary steering committee was established. An electronic modified Delphi study was conducted to develop a structure and content for birth plans between November 2022 and June 2023. During three Delphi consensus rounds, panellists, including perinatal health care professionals and user representatives, were asked to rate individually and independently each proposed section and subsection formulation of the birth plan for its appropriateness. An external board assessed the understandability of the final birth plan's preamble and content. Results The steering committee proposed 103 formulations corresponding to items to be covered in a birth plan, categorized into 8 sections and 30 subsections, for evaluation in the Delphi rounds. The first round was completed by 42 panellists (mainly midwives), the second by 39, and the third by 36. Finally, the steering committee approved the final components of the structured birth plan in 8 sections and 19 subsections, after its reviewing by the 21 members of the external board. Conclusion A French national Delphi process, after three rounds and validation by an external board, made it possible to reach a consensus on the structure and content of a birth plan in 8 sections and 19 subsections. Patient or Public Contribution User representatives were included as experts in the Delphi rounds, and in the external board to approve the final version of the structured birth plan.