Jolanda H. M. Dobbe, Ellen M. A. Smets, Esmee Kreuk, Simone Coppelmans, Lars Ramaker, Moniek Schröder, Diny E. Stekelenburg, Wiebe de Vries, W. M. Monique Verschuren, Kay Deckers, Frank J. Wolters, Leonie N. C. Visser
<div> <section> <h3> Objectives</h3> <p>Optimal dementia risk reduction requires a combination of individual- and population-level approaches. Societal stakeholders play a crucial role by raising awareness, supporting individual lifestyle change, and/or influencing certain risk factors through policy changes. This study aimed to identify relevant societal stakeholders for promoting dementia risk reduction, and explore perspectives regarding their role.</p> </section> <section> <h3> Methods</h3> <p>We used a qualitative approach with participatory research elements (i.e., collaborating with stakeholders in the research). An advisory panel of citizens (<i>n</i> = 14) was installed to provide input on various study aspects (e.g., study design and interpretation of findings). Thereafter, data collection involved two phases: 1) identification of potentially relevant societal stakeholders (based on advisory panel discussions, a conference workshop, and online searches); and 2) exploration of perspectives of participants from selected stakeholder domains, through 18 interviews and one focus group (total <i>N</i> = 32). We analysed data using thematic analysis.</p> </section> <section> <h3> Results</h3> <p>Phase 2 revealed that participants, such as religious leaders, labour service employees and board members of student associations, had limited knowledge and experienced little responsibility to act as a societal stakeholder in the context of dementia risk reduction. Rather, they called for policy and regulations to make dementia risk reduction efforts obligatory and a public priority. Participants recommended incorporating information on dementia and dementia risk in general health campaigns, rather than organising dementia-specific campaigns, and stressed the need to stimulate dementia risk reduction early in life.</p> </section> <section> <h3> Conclusions</h3> <p>Effective dementia risk reduction could benefit from increased stakeholder involvement, as well as imposed policy-level risk reduction measures. Our findings also highlight the importance of including dementia in education and healthy lifestyle programmes from an early age. Future studies are needed to validate our findings on a larger scale, and among different stakeholders.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>Citizens were involved in study conceptualisation and design, and in the interpretation, reporting and dissemination of findings.</p> </s
{"title":"Involving Societal Stakeholders in Dementia Risk Reduction: An Explorative Study","authors":"Jolanda H. M. Dobbe, Ellen M. A. Smets, Esmee Kreuk, Simone Coppelmans, Lars Ramaker, Moniek Schröder, Diny E. Stekelenburg, Wiebe de Vries, W. M. Monique Verschuren, Kay Deckers, Frank J. Wolters, Leonie N. C. Visser","doi":"10.1111/hex.70541","DOIUrl":"10.1111/hex.70541","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>Optimal dementia risk reduction requires a combination of individual- and population-level approaches. Societal stakeholders play a crucial role by raising awareness, supporting individual lifestyle change, and/or influencing certain risk factors through policy changes. This study aimed to identify relevant societal stakeholders for promoting dementia risk reduction, and explore perspectives regarding their role.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We used a qualitative approach with participatory research elements (i.e., collaborating with stakeholders in the research). An advisory panel of citizens (<i>n</i> = 14) was installed to provide input on various study aspects (e.g., study design and interpretation of findings). Thereafter, data collection involved two phases: 1) identification of potentially relevant societal stakeholders (based on advisory panel discussions, a conference workshop, and online searches); and 2) exploration of perspectives of participants from selected stakeholder domains, through 18 interviews and one focus group (total <i>N</i> = 32). We analysed data using thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Phase 2 revealed that participants, such as religious leaders, labour service employees and board members of student associations, had limited knowledge and experienced little responsibility to act as a societal stakeholder in the context of dementia risk reduction. Rather, they called for policy and regulations to make dementia risk reduction efforts obligatory and a public priority. Participants recommended incorporating information on dementia and dementia risk in general health campaigns, rather than organising dementia-specific campaigns, and stressed the need to stimulate dementia risk reduction early in life.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Effective dementia risk reduction could benefit from increased stakeholder involvement, as well as imposed policy-level risk reduction measures. Our findings also highlight the importance of including dementia in education and healthy lifestyle programmes from an early age. Future studies are needed to validate our findings on a larger scale, and among different stakeholders.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Citizens were involved in study conceptualisation and design, and in the interpretation, reporting and dissemination of findings.</p>\u0000 </s","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 1","pages":""},"PeriodicalIF":3.2,"publicationDate":"2026-01-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12820418/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146012465","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Carole Bandiera, Megan Darwood, Sabuj Kanti Mistry, Elizabeth Harris, Mark F. Harris, Parisa Aslani
<div> <section> <h3> Background</h3> <p>Community health workers (CHWs) can bridge the gap between health and social services and the communities they serve. CHWs can work collaboratively with healthcare professionals, such as pharmacists, in addressing peoples' social determinants of health. However, little is known about how CHWs and pharmacists collaborate. We aimed to explore the interprofessional collaboration between pharmacists and CHWs in Australia and New Zealand and identify the challenges and strategies in their collaborative practice.</p> </section> <section> <h3> Methods</h3> <p>Semi-structured interviews were conducted with pharmacists and CHWs in Australia and New Zealand, to explore (i) CHW-pharmacist interprofessional collaboration experiences, (ii) how pharmacists perceived CHWs' roles and vice-versa, (iii), challenges to collaborative practices and (iv) strategies to foster their collaboration. Interviews took around half-an-hour and were audio-recorded, transcribed verbatim, and inductively thematically analysed.</p> </section> <section> <h3> Results</h3> <p>Twenty-nine participants (16 pharmacists and 13 CHWs) were interviewed, 19 worked in Australia and 10 in New Zealand. Participants reported that CHWs connected the patient and the pharmacist and helped bridge cultural gaps, shared patient-related information with the pharmacist, supported patient medication management and adherence, and referred patients to pharmacists. CHWs helped patients to take up pharmacy services and reinforced pharmacists' recommendations. There was a lack of clarity regarding each other's role, but pharmacists and CHWs acknowledged the benefit of each other's roles. Key challenges to collaborative practices were poor communication between CHWs and pharmacists, and lack of guidelines on the collaborative practices. Strategies to promote collaboration included clarification of their roles, improving the working relationship and knowledge of the mutual benefits of collaboration.</p> </section> <section> <h3> Conclusions</h3> <p>The study identified some collaborative practices between CHWs and pharmacists. However, challenges remain, including a lack of clarity regarding CHWs' roles by pharmacists. Future research should focus on improving knowledge of the mutual benefits of collaboration, and codesigning a CHW-pharmacist collaborative intervention with guidelines to standardise and foster collaboration.</p> </section> <section> <h3> Patient or Public Contribution</h3>
{"title":"Interprofessional Collaboration Between Community Health Workers and Pharmacists","authors":"Carole Bandiera, Megan Darwood, Sabuj Kanti Mistry, Elizabeth Harris, Mark F. Harris, Parisa Aslani","doi":"10.1111/hex.70538","DOIUrl":"10.1111/hex.70538","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Community health workers (CHWs) can bridge the gap between health and social services and the communities they serve. CHWs can work collaboratively with healthcare professionals, such as pharmacists, in addressing peoples' social determinants of health. However, little is known about how CHWs and pharmacists collaborate. We aimed to explore the interprofessional collaboration between pharmacists and CHWs in Australia and New Zealand and identify the challenges and strategies in their collaborative practice.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Semi-structured interviews were conducted with pharmacists and CHWs in Australia and New Zealand, to explore (i) CHW-pharmacist interprofessional collaboration experiences, (ii) how pharmacists perceived CHWs' roles and vice-versa, (iii), challenges to collaborative practices and (iv) strategies to foster their collaboration. Interviews took around half-an-hour and were audio-recorded, transcribed verbatim, and inductively thematically analysed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Twenty-nine participants (16 pharmacists and 13 CHWs) were interviewed, 19 worked in Australia and 10 in New Zealand. Participants reported that CHWs connected the patient and the pharmacist and helped bridge cultural gaps, shared patient-related information with the pharmacist, supported patient medication management and adherence, and referred patients to pharmacists. CHWs helped patients to take up pharmacy services and reinforced pharmacists' recommendations. There was a lack of clarity regarding each other's role, but pharmacists and CHWs acknowledged the benefit of each other's roles. Key challenges to collaborative practices were poor communication between CHWs and pharmacists, and lack of guidelines on the collaborative practices. Strategies to promote collaboration included clarification of their roles, improving the working relationship and knowledge of the mutual benefits of collaboration.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The study identified some collaborative practices between CHWs and pharmacists. However, challenges remain, including a lack of clarity regarding CHWs' roles by pharmacists. Future research should focus on improving knowledge of the mutual benefits of collaboration, and codesigning a CHW-pharmacist collaborative intervention with guidelines to standardise and foster collaboration.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 1","pages":""},"PeriodicalIF":3.2,"publicationDate":"2026-01-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70538","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146004551","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Tescha Nicholls, Sarah York, Nathan J. Harrison, Georgia Bartlett, John Paul Troiani, Biljana Stanoevska, Mei Ling Yap, Joel Rhee, Rachael H. Dodd, Henry M. Marshall, Annette McWilliams, Emily Stone, Leissa Pitts, Nicole M. Rankin
<div> <section> <h3> Introduction</h3> <p>Lung cancer is the number one cause of cancer death worldwide, including in Australia, where more than 15,000 cases were diagnosed in 2024. The Australian National Lung Cancer Screening Programme commenced in July 2025. Unique barriers to participation in existing cancer screening programmes exist for culturally and linguistically diverse (CALD) communities. Little Australian research has engaged these communities to gauge their acceptability and readiness for the implementation of lung cancer screening (LCS). The aims were to identify barriers and enablers to LCS implementation and determine views about LCS acceptability and feasibility.</p> </section> <section> <h3> Methods</h3> <p>Community-based participatory research principles were used to collaboratively engage CALD stakeholders. The research team worked with highly experienced programme managers, multicultural health workers and bilingual facilitators/translators (‘leaders’) who provide support and education to Arabic-speaking/Lebanese, Macedonian, Vietnamese and Italian communities. Leaders used culturally appropriate methods to recruit participants and deliver focus groups. Verbatim transcripts were analysed using a coding framework based on the Health Equity Implementation Framework.</p> </section> <section> <h3> Results</h3> <p>Seven focus groups were conducted either face to face (<i>n</i> = 5) or online (<i>n</i> = 2) with 57 participants across New South Wales, Australia. Six groups were delivered in community languages. LCS was generally perceived as acceptable across all focus groups. Key enablers towards engagement were understanding the importance of screening for early detection, provision of interpreters and easily accessible locations. Key barriers were financial and language barriers, poor experiences with other cancer screening programmes, concerns about tobacco-related eligibility criteria and cancer-related stigma.</p> </section> <section> <h3> Conclusions</h3> <p>This qualitative study provides crucial foundational evidence from four culturally diverse Australian communities about barriers and enablers to inform Programme implementation. The findings are highly relevant to other jurisdictions that may be preparing for LCS implementation or need to modify programmes to engage culturally diverse populations to screen.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>Members of the public were directly involved as
{"title":"Engaging Culturally and Linguistically Diverse Communities to Prepare for Lung Cancer Screening Implementation in Australia: A Qualitative Focus Group Study","authors":"Tescha Nicholls, Sarah York, Nathan J. Harrison, Georgia Bartlett, John Paul Troiani, Biljana Stanoevska, Mei Ling Yap, Joel Rhee, Rachael H. Dodd, Henry M. Marshall, Annette McWilliams, Emily Stone, Leissa Pitts, Nicole M. Rankin","doi":"10.1111/hex.70557","DOIUrl":"10.1111/hex.70557","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Lung cancer is the number one cause of cancer death worldwide, including in Australia, where more than 15,000 cases were diagnosed in 2024. The Australian National Lung Cancer Screening Programme commenced in July 2025. Unique barriers to participation in existing cancer screening programmes exist for culturally and linguistically diverse (CALD) communities. Little Australian research has engaged these communities to gauge their acceptability and readiness for the implementation of lung cancer screening (LCS). The aims were to identify barriers and enablers to LCS implementation and determine views about LCS acceptability and feasibility.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Community-based participatory research principles were used to collaboratively engage CALD stakeholders. The research team worked with highly experienced programme managers, multicultural health workers and bilingual facilitators/translators (‘leaders’) who provide support and education to Arabic-speaking/Lebanese, Macedonian, Vietnamese and Italian communities. Leaders used culturally appropriate methods to recruit participants and deliver focus groups. Verbatim transcripts were analysed using a coding framework based on the Health Equity Implementation Framework.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Seven focus groups were conducted either face to face (<i>n</i> = 5) or online (<i>n</i> = 2) with 57 participants across New South Wales, Australia. Six groups were delivered in community languages. LCS was generally perceived as acceptable across all focus groups. Key enablers towards engagement were understanding the importance of screening for early detection, provision of interpreters and easily accessible locations. Key barriers were financial and language barriers, poor experiences with other cancer screening programmes, concerns about tobacco-related eligibility criteria and cancer-related stigma.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This qualitative study provides crucial foundational evidence from four culturally diverse Australian communities about barriers and enablers to inform Programme implementation. The findings are highly relevant to other jurisdictions that may be preparing for LCS implementation or need to modify programmes to engage culturally diverse populations to screen.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Members of the public were directly involved as","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 1","pages":""},"PeriodicalIF":3.2,"publicationDate":"2026-01-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70557","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145999913","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Elena Faccio, Michele Rocelli, Giuseppe Salamina, Ludovica Aquili
Introduction
Sharing narratives about recovery is a central activity in peer support work. Researchers have so far investigated many issues related to recovery narratives, but have paid no attention to how the building and sharing of one's story are modified during training courses. This study examines the beliefs of participants in the first national training to become Peer Support Worker (PSW), funded by the Italian Ministry of Health in 2022–23, regarding how to craft their recovery story to make it ‘professional’.
Methods
16 PSWs were interviewed at the end of the course. Implicit theories and beliefs were the focus of the semi-structured interviews. Answers were transcribed and analysed through thematic analysis.
Results
The training represents a decisive moment for socialising the ‘unwritten rules’ about how to build and tell personal experiences. Seven main themes emerged: the story-sharing as the most important tool to understand what happened, as a ‘passage’ of status that changes the feeling between the person and the story through the presence of others, the need for a method for structuring the story, the emotion control as prerequisite for maintaining the right distance between one's story and the user's story—not imposing oneself on the other's experience, the relevance of acting as strategic story director, accepting stories without happy ending and story-sharing for cultural and social change. Results have been discussed with the contribution of PSW, highlighting the potentials and risks.
Conclusions
Training should develop competencies in expressing the story without standardising it, thereby avoiding the reification of the recovery journey into a single version. Story-sharing should not be considered merely as the enactment of a favourable recovery journey; even stories that do not have a happy ending, or that do not adhere to the canons of the ‘recovery genre’, have dignity and social utility. In a nutshell, the PSW must be helped in becoming the filmmaker of the story rather than the performer of a static script.
Patient or Public Involvement
The PSWs involved played a fundamental role in participating actively by deciding to make available their narratives, reading the results and commenting on them.
{"title":"How to Tell a Recovery Story ‘Professionally’? Issues Related to the Transformation of Personal Stories During a Training for Becoming a Peer Support Worker","authors":"Elena Faccio, Michele Rocelli, Giuseppe Salamina, Ludovica Aquili","doi":"10.1111/hex.70528","DOIUrl":"10.1111/hex.70528","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Sharing narratives about recovery is a central activity in peer support work. Researchers have so far investigated many issues related to recovery narratives, but have paid no attention to how the building and sharing of one's story are modified during training courses. This study examines the beliefs of participants in the first national training to become Peer Support Worker (PSW), funded by the Italian Ministry of Health in 2022–23, regarding how to craft their recovery story to make it ‘professional’.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>16 PSWs were interviewed at the end of the course. Implicit theories and beliefs were the focus of the semi-structured interviews. Answers were transcribed and analysed through thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The training represents a decisive moment for socialising the ‘unwritten rules’ about how to build and tell personal experiences. Seven main themes emerged: the story-sharing as the most important tool to understand what happened, as a ‘passage’ of status that changes the feeling between the person and the story through the presence of others, the need for a method for structuring the story, the emotion control as prerequisite for maintaining the right distance between one's story and the user's story—not imposing oneself on the other's experience, the relevance of acting as strategic story director, accepting stories without happy ending and story-sharing for cultural and social change. Results have been discussed with the contribution of PSW, highlighting the potentials and risks.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Training should develop competencies in expressing the story without standardising it, thereby avoiding the reification of the recovery journey into a single version. Story-sharing should not be considered merely as the enactment of a favourable recovery journey; even stories that do not have a happy ending, or that do not adhere to the canons of the ‘recovery genre’, have dignity and social utility. In a nutshell, the PSW must be helped in becoming the filmmaker of the story rather than the performer of a static script.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Involvement</h3>\u0000 \u0000 <p>The PSWs involved played a fundamental role in participating actively by deciding to make available their narratives, reading the results and commenting on them.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 1","pages":""},"PeriodicalIF":3.2,"publicationDate":"2026-01-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12808814/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145991905","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Ludovica Aquili, Michele Rocelli, Susanna Brunelli, Federica Mangione, Milena Negri, Giuseppe Salamina, Elena Faccio
<div> <section> <h3> Introduction</h3> <p>The role of the Peer Support Worker (PSW) has gained increasing prominence in mental health services, yet its institutionalisation raises questions about balancing autonomy and assimilation into service logics. This study examines the narrative positionings of three PSWs, focusing on how they construct professional identity in relation to mandate, collaboration with practitioners, and service organisation.</p> </section> <section> <h3> Methods</h3> <p>A qualitative design was adopted using semi-structured interviews with three PSWs. Data were analysed through Positioning Theory (Davies and Harré 1999) and Bamberg's three-level model (2022), which investigates positioning in relation to temporality, the other and agency. Particular attention was given to positions regarding the professional mandate, collaboration with practitioners, psychiatric and psychotherapeutic practices, and the services in which participants had placements or are currently engaged.</p> </section> <section> <h3> Results</h3> <p>PSW positioning emerged as dynamic and multifaceted, constantly negotiated between institutional mandates and fidelity to lived experience. Three configurations were identified: (1) a critical and independent stance, maintaining symbolic distance from services whilst collaborating with them; (2) an integrated stance, balancing institutional logics with attentiveness to user experience; and (3) a fluid stance, affirming the coexistence of PSW and service-user roles and challenging conventional boundaries between clinical and experiential knowledge. Across all narratives, PSWs located themselves in liminal spaces that foster transformative possibilities for mental health services.</p> </section> <section> <h3> Conclusion</h3> <p>PSW identity is not fixed but articulated through multiple positionings, ranging from critical autonomy to institutional integration and fluid coexistence of service-user and professional roles. This plurality, rather than constituting ambiguity, represents an epistemic and ethical resource that extends the transformative potential of services beyond the dichotomy of transformation versus assimilation. Recognising this plurality means valuing PSW agency and fostering flexible, participatory practices responsive to the complexity of lived experience.</p> </section> <section> <h3> Involving the Participants</h3> <p>The research team included both academics and PSWs in a co-participatory desi
导言：同伴支持工作者（PSW）的作用在精神卫生服务中越来越突出，但其制度化提出了关于平衡自主性和融入服务逻辑的问题。本研究考察了三名社会福利工作者的叙事定位，重点关注他们如何在任务、与从业人员的合作和服务组织方面构建专业身份。方法：采用质性设计，对3名心理健康工作者进行半结构化访谈。通过定位理论（Davies and harr 1999）和Bamberg的三层模型（2022）对数据进行了分析，该模型研究了定位与时间性、他者和代理的关系。特别注意了与专业任务、与从业人员的合作、精神病学和心理治疗做法以及参与者已安置或目前从事的服务有关的职位。结果：PSW的定位是动态的和多方面的，在机构授权和对生活经验的忠诚之间不断协商。确定了三种配置：(1)关键和独立的立场，在与服务合作的同时保持象征性的距离；(2)综合立场，平衡制度逻辑与对用户体验的关注；(3)流动的立场，肯定PSW和服务用户角色的共存，挑战临床和经验知识之间的传统界限。在所有叙述中，psw将自己定位于促进精神卫生服务变革可能性的有限空间。结论：PSW的身份不是固定的，而是通过多种定位来表达的，从关键的自主性到机构整合，以及服务-用户和专业角色的流动共存。这种多元性，而不是构成模糊性，代表了一种认知和伦理资源，它扩展了服务的变革潜力，超越了转型与同化的二分法。认识到这种多元性意味着重视PSW机构，并培养灵活的、参与性的实践，以响应生活经验的复杂性。让参与者参与：研究团队包括学者和社会福利工作者，透过自愿申请参与共同参与的设计。只有得到明确同意的访谈才被纳入研究。分析的初稿被提交给参与者验证：每个PSW审查他们自己的记录和相关评论，并可以选择修改或扩展分析。然后在小组内共享材料，以便集体反思和改进解释。通过这个集体的过程，这个小组共同撰写了这篇文章的当前版本。临床试验注册：不符合。
{"title":"Peer Support Workers in Mental Health Care: Plural Positionings Beyond Transformation and Assimilation Dichotomy","authors":"Ludovica Aquili, Michele Rocelli, Susanna Brunelli, Federica Mangione, Milena Negri, Giuseppe Salamina, Elena Faccio","doi":"10.1111/hex.70515","DOIUrl":"10.1111/hex.70515","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>The role of the Peer Support Worker (PSW) has gained increasing prominence in mental health services, yet its institutionalisation raises questions about balancing autonomy and assimilation into service logics. This study examines the narrative positionings of three PSWs, focusing on how they construct professional identity in relation to mandate, collaboration with practitioners, and service organisation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A qualitative design was adopted using semi-structured interviews with three PSWs. Data were analysed through Positioning Theory (Davies and Harré 1999) and Bamberg's three-level model (2022), which investigates positioning in relation to temporality, the other and agency. Particular attention was given to positions regarding the professional mandate, collaboration with practitioners, psychiatric and psychotherapeutic practices, and the services in which participants had placements or are currently engaged.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>PSW positioning emerged as dynamic and multifaceted, constantly negotiated between institutional mandates and fidelity to lived experience. Three configurations were identified: (1) a critical and independent stance, maintaining symbolic distance from services whilst collaborating with them; (2) an integrated stance, balancing institutional logics with attentiveness to user experience; and (3) a fluid stance, affirming the coexistence of PSW and service-user roles and challenging conventional boundaries between clinical and experiential knowledge. Across all narratives, PSWs located themselves in liminal spaces that foster transformative possibilities for mental health services.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>PSW identity is not fixed but articulated through multiple positionings, ranging from critical autonomy to institutional integration and fluid coexistence of service-user and professional roles. This plurality, rather than constituting ambiguity, represents an epistemic and ethical resource that extends the transformative potential of services beyond the dichotomy of transformation versus assimilation. Recognising this plurality means valuing PSW agency and fostering flexible, participatory practices responsive to the complexity of lived experience.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Involving the Participants</h3>\u0000 \u0000 <p>The research team included both academics and PSWs in a co-participatory desi","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 1","pages":""},"PeriodicalIF":3.2,"publicationDate":"2026-01-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12808803/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145991626","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Klaudia Kristensen, Anna Skov, Solvejg Kristensen, Ottar Ness, Søren Paaske Johnsen, Mainz Jan, Malene Terp
<div> <section> <h3> Background</h3> <p>Despite decades of quality improvement efforts in mental healthcare, patient preferences remain insufficiently integrated into care planning and system design. Although person-centered care strives to align services with patients' most valued preferences, current tools for measuring those preferences often fall short. Embedding co-design approaches—where patients and other stakeholders collaborate as equal partners in tool development—is essential to ensure that measurement instruments are both relevant and resonant with lived experience. This study aimed to develop a questionnaire that captures patient preferences in mental healthcare through a co-design process that actively integrates lived experience, thereby enhancing face and content validity.</p> </section> <section> <h3> Methods</h3> <p>The development of the questionnaire followed four key phases: identification of domain, item generation, content validity, and pre-testing of questions. A co-design approach was integral to the entire process, with active collaboration with the co-researcher or co-designers at every phase.</p> </section> <section> <h3> Results</h3> <p>Nine themes were identified in the literature, and two novel themes, “the person as a whole” and “meaningful community connections” emerged through co-design and extend beyond prior studies. From 242 preliminary items, workshops refined the questionnaire to 58, and content validation further reduced it to 54 items with recommendations for clarity, simplicity, and anonymous responses. Pre-testing of questions confirmed the questionnaire's usability and face validity.</p> </section> <section> <h3> Conclusions</h3> <p>This study demonstrates how traditional questionnaire development can be supported by co-design to effectively develop a patient preference questionnaire that is both valid and meaningful within the Danish mental healthcare context. While limitations exist, particularly regarding group dynamics and representation, the process sets a strong foundation for future work.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>This study was co-designed in collaboration with individuals with lived experience of mental illness. A co-researcher with lived experience was involved throughout several stages of the research process, including the design and facilitation of workshops, recruitment of participants, and interpretation of findings. Additional 15 co-designers with
{"title":"Initial Co-Design Development of a Questionnaire to Measure Patient Preferences in a Danish Mental Healthcare Setting","authors":"Klaudia Kristensen, Anna Skov, Solvejg Kristensen, Ottar Ness, Søren Paaske Johnsen, Mainz Jan, Malene Terp","doi":"10.1111/hex.70561","DOIUrl":"10.1111/hex.70561","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Despite decades of quality improvement efforts in mental healthcare, patient preferences remain insufficiently integrated into care planning and system design. Although person-centered care strives to align services with patients' most valued preferences, current tools for measuring those preferences often fall short. Embedding co-design approaches—where patients and other stakeholders collaborate as equal partners in tool development—is essential to ensure that measurement instruments are both relevant and resonant with lived experience. This study aimed to develop a questionnaire that captures patient preferences in mental healthcare through a co-design process that actively integrates lived experience, thereby enhancing face and content validity.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The development of the questionnaire followed four key phases: identification of domain, item generation, content validity, and pre-testing of questions. A co-design approach was integral to the entire process, with active collaboration with the co-researcher or co-designers at every phase.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Nine themes were identified in the literature, and two novel themes, “the person as a whole” and “meaningful community connections” emerged through co-design and extend beyond prior studies. From 242 preliminary items, workshops refined the questionnaire to 58, and content validation further reduced it to 54 items with recommendations for clarity, simplicity, and anonymous responses. Pre-testing of questions confirmed the questionnaire's usability and face validity.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This study demonstrates how traditional questionnaire development can be supported by co-design to effectively develop a patient preference questionnaire that is both valid and meaningful within the Danish mental healthcare context. While limitations exist, particularly regarding group dynamics and representation, the process sets a strong foundation for future work.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>This study was co-designed in collaboration with individuals with lived experience of mental illness. A co-researcher with lived experience was involved throughout several stages of the research process, including the design and facilitation of workshops, recruitment of participants, and interpretation of findings. Additional 15 co-designers with","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 1","pages":""},"PeriodicalIF":3.2,"publicationDate":"2026-01-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12808807/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145991591","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
<p>I read with great interest the article by Malapela et al., titled “Exploring Stakeholder Roles and Strategies for Preventing Teenage Pregnancy: A Comprehensive Analysis in Lepelle-Nkumpi District, South Africa” (2025) [<span>1</span>]. The authors make a very valuable contribution by foregrounding the voices of non-governmental organizations (NGOs) working closely with teenagers in rural communities. Their thematic analysis, highlighting multi-stakeholder collaboration, economic empowerment, nurturing family bonds, information sharing, and extramural activities offers a rich and pragmatic framework for community-level action.</p><p>As an obstetrician working in teenager and maternal health, I would like to offer a complementary perspective relevant to this era. The study deliberately focused on NGO workers; however, obstetricians, midwives, and nurses are also central actors in both the prevention and clinical management of teenage pregnancy. These professionals are often the first to see pregnant teenagers, manage complications, and provide post-pregnancy contraception. Their perspectives can offer valuable guidance for policymakers, communities, and stakeholders.</p><p>In my daily practice as an obstetrician, I have encountered teenagers presenting with complications of early pregnancy or with a second pregnancy within a short interval, despite having previously interacted with health services. Many of these young patients shared that no one had ever discussed effective contraception with them in a clear, nonjudgmental manner after their first pregnancy or abortion. This represents a missed opportunity for prevention. These experiences suggest that hospital- and clinic-based providers are not only treating the consequences of teenage pregnancy but are also uniquely positioned to intervene and prevent repeat pregnancies through timely counselling.</p><p>In a study conducted in socioeconomically deprived neighborhoods with high immigrant populations, a culturally adapted community-based contraceptive counselling program was implemented. Following the intervention, fertility rates among girls aged 15–19 years declined by approximately 40%. The authors concluded that brief, community-based counselling initiatives can significantly reduce adolescent fertility rates [<span>2</span>]. It is likely that if midwives and nurses were assigned community-based roles and supported to conduct such initiatives, similar reductions could be achieved.</p><p>Obstetricians can also allocate additional time within hospital settings to actively focus on preventing repeat pregnancies. The review by Sedlecky and Stanković emphasized that the most effective strategy to prevent repeated unintended adolescent pregnancies is to initiate an effective contraceptive method immediately after abortion. This timing is critical, as motivation for contraception is highest at that moment. Ovulation typically resumes within 3 weeks, and more than half of adolescents resume sexual
{"title":"Integrating Clinical Perspectives in the Prevention of Teenage Pregnancy","authors":"Erhan Muluk","doi":"10.1111/hex.70570","DOIUrl":"10.1111/hex.70570","url":null,"abstract":"<p>I read with great interest the article by Malapela et al., titled “Exploring Stakeholder Roles and Strategies for Preventing Teenage Pregnancy: A Comprehensive Analysis in Lepelle-Nkumpi District, South Africa” (2025) [<span>1</span>]. The authors make a very valuable contribution by foregrounding the voices of non-governmental organizations (NGOs) working closely with teenagers in rural communities. Their thematic analysis, highlighting multi-stakeholder collaboration, economic empowerment, nurturing family bonds, information sharing, and extramural activities offers a rich and pragmatic framework for community-level action.</p><p>As an obstetrician working in teenager and maternal health, I would like to offer a complementary perspective relevant to this era. The study deliberately focused on NGO workers; however, obstetricians, midwives, and nurses are also central actors in both the prevention and clinical management of teenage pregnancy. These professionals are often the first to see pregnant teenagers, manage complications, and provide post-pregnancy contraception. Their perspectives can offer valuable guidance for policymakers, communities, and stakeholders.</p><p>In my daily practice as an obstetrician, I have encountered teenagers presenting with complications of early pregnancy or with a second pregnancy within a short interval, despite having previously interacted with health services. Many of these young patients shared that no one had ever discussed effective contraception with them in a clear, nonjudgmental manner after their first pregnancy or abortion. This represents a missed opportunity for prevention. These experiences suggest that hospital- and clinic-based providers are not only treating the consequences of teenage pregnancy but are also uniquely positioned to intervene and prevent repeat pregnancies through timely counselling.</p><p>In a study conducted in socioeconomically deprived neighborhoods with high immigrant populations, a culturally adapted community-based contraceptive counselling program was implemented. Following the intervention, fertility rates among girls aged 15–19 years declined by approximately 40%. The authors concluded that brief, community-based counselling initiatives can significantly reduce adolescent fertility rates [<span>2</span>]. It is likely that if midwives and nurses were assigned community-based roles and supported to conduct such initiatives, similar reductions could be achieved.</p><p>Obstetricians can also allocate additional time within hospital settings to actively focus on preventing repeat pregnancies. The review by Sedlecky and Stanković emphasized that the most effective strategy to prevent repeated unintended adolescent pregnancies is to initiate an effective contraceptive method immediately after abortion. This timing is critical, as motivation for contraception is highest at that moment. Ovulation typically resumes within 3 weeks, and more than half of adolescents resume sexual","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 1","pages":""},"PeriodicalIF":3.2,"publicationDate":"2026-01-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12804142/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145971433","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Lisa D. Hawke, Katie Upham, Hajar Seiyad, Mary Rose van Kesteren
<p>Engaging people with lived/living experience and caregivers in research (also known as ‘patient engagement’ or ‘patient and public involvement’) has many benefits to research, to the community, and to the people involved in the process [<span>1</span>]. Engagement is increasingly valued by many funding bodies [<span>2, 3</span>] as being best practice when possible. However, funding barriers have been described as getting in the way of authentic engagement [<span>4</span>]. It is therefore important that grant writers optimise their descriptions of the engagement components of their protocols, making engagement a strength of their applications. Researchers have many grant writing recommendations, courses, and professional development materials available to them to support them in their grant-writing endeavours [<span>5, 6</span>]. Yet, there is minimal concrete, specific guidance on how to embed lived/living experience and caregiver engagement into grant applications effectively [<span>7</span>]. With this editorial, we aim to address this gap.</p><p>The engagement description in a grant application serves to clarify the applicants' engagement methods for their own purposes and sets them out to be judged by a team of peer reviewers, who are the gatekeepers to funding. Although rare, some funders include people with lived/living experience and caregivers as peer reviewers [<span>8</span>], who are well positioned to evaluate proposed engagement strategies. Whether lived/living experience peer reviewers are included or not, the way engagement is described in the protocol can influence the funding decision. If the engagement is poorly described and peer reviewers fear tokenistic engagement approaches, the application may be less likely to be funded. Regardless of page limits and tight application requirements, engagement can be well described in any protocol, and should be described together with lived/living experience and caregiver co-applicants or collaborators when possible.</p><p>Through our experience in writing and reviewing grant applications, we have come to recognise when engagement is well described, making it a strength of the application, versus when it is poorly described, raising fears of tokenistic, performative engagement. Based on this experience, we propose a number of recommendations to guide grant writers in effectively describing engagement in their grant applications (see Box 1). These recommendations can be generally followed regardless of the format of the funding call, to the extent possible within the limits of the application guidelines. Below, we describe an overview of how engagement might be described poorly in a grant application, which we contrast with the description of a robustly described engagement plan. In doing so, our goal is to equip researchers to optimise the engagement components of their grant applications to maximise the chances of funding, thereby increasing the amount of patient-engaged research bei
参与过程可能被视为仅仅是一个象征性的复选框，旨在满足资助者的需求，而不是反映申请人团队的合法利益和承诺。在这种情况下，无论资助人的初衷如何，参与都不太可能被评估为支持积极资助决策的应用程序的优势。相比之下，一些拨款申请表达了引人注目和令人兴奋的参与计划。他们强调参与是研究的核心价值，其方式与资助机构的授权、指示和价值观相一致，并使同行审稿人相信参与计划的真实性。参与是前沿和中心，同行评议者可以确信，研究人员有承诺和技能，以一种充实的方式吸引有生活经验的人和照顾者，体现包容、尊重、真诚和有意义的参与。一份写得好的参与计划的拨款申请有很多特点。值得注意的是，参与度贯穿于整个应用程序，并作为核心价值嵌入其中。申请人团队参考并引用参与中的模型、框架或最佳实践，包括资助者提供的任何模型、框架或最佳实践，并承诺遵循这些模型、框架或最佳实践。提供具体的业务结构，包括会议的次数、频率和长度；将参与的有生活经验的人员和护理人员的数量；以及他们将在整个项目过程中完成的具体任务，从开始到结束。该计划在整个项目中是可行的、可信的和一致的。“共同”的语言在整个拨款中使用，拨款作者表明研究工具或产品将共同生产，共同选择或共同创造。参与甚至可以直接嵌入到目标声明中，例如“与有生活经验的人和护理人员直接合作，我们的目标是……”。这延续到影响和相关性陈述以及应用程序的结论。如果赠款包括研究实施阶段，则会聘请相同的生活经历和护理伙伴来帮助将研究结果转化为现实世界的实践。相关的预算表明，承诺为所有会议、演讲和异步工作时间支付有生活经验的人和照顾者的生活工资或更高的工资，加上旅行费用，以鼓励公平，并为计划外的紧急贡献留出一些空间。描述了可访问性和多样性考虑因素。不止一个有生活经验的人可能被包括为知识使用者或合作者，或者提供了支持信，他们反映了资助申请的重点人群。他们的专业知识得到强调和重视。理想情况下，一些最初的参与将已经发生，以完善研究问题，并且生活/生活和护理经验反馈有助于形成资助申请的描述。申请人已经证明他们在参与方面具有专业知识，真正关心确保公平合作，并且真正理解参与过程，或者已经引入了具有这种互补专业知识的可靠团队成员。在同行评审看来，遵循这些建议的资助申请会显得更真诚，展示出一个充实而有意义的参与计划。参与成为应用程序的关键优势，也是促使同行审稿人决定推荐资助的一个因素。我们致力于支持在整个研究过程中嵌入生活/生活经验的研究，从创意产生到知识动员。我们相信，在整个研究部门中嵌入有意义的参与将创造更多相关的研究，为参与人员和研究人员创造更有意义的经验，建立更严格的证据基础，最终建立更强大的医疗保健系统，更能反映他们所服务的人的需求，同时为所有研究团队成员建立能力。然而，为了让参与式研究在健康研究中占据主导地位，它需要得到资助机构的鼓励，并得到成功的资助。我们希望这些建议能帮助申请基金的人强调参与是他们申请的优势。我们进一步希望，这将提高积极参与的研究团队的资助成功率，帮助提高研究标准，使强有力的参与计划成为黄金标准，并最终使卫生系统受益。Lisa D. Hawke：概念化，写作-原稿，资金获取。Katie Upham, Hajar Seiyad， Mary Rose van Kesteren：概念化，写作-评论和编辑。作者没有什么可报告的。
{"title":"Writing Patient Engagement Effectively Into Grant Applications: Practical Tips for Grant Writers","authors":"Lisa D. Hawke, Katie Upham, Hajar Seiyad, Mary Rose van Kesteren","doi":"10.1111/hex.70547","DOIUrl":"10.1111/hex.70547","url":null,"abstract":"<p>Engaging people with lived/living experience and caregivers in research (also known as ‘patient engagement’ or ‘patient and public involvement’) has many benefits to research, to the community, and to the people involved in the process [<span>1</span>]. Engagement is increasingly valued by many funding bodies [<span>2, 3</span>] as being best practice when possible. However, funding barriers have been described as getting in the way of authentic engagement [<span>4</span>]. It is therefore important that grant writers optimise their descriptions of the engagement components of their protocols, making engagement a strength of their applications. Researchers have many grant writing recommendations, courses, and professional development materials available to them to support them in their grant-writing endeavours [<span>5, 6</span>]. Yet, there is minimal concrete, specific guidance on how to embed lived/living experience and caregiver engagement into grant applications effectively [<span>7</span>]. With this editorial, we aim to address this gap.</p><p>The engagement description in a grant application serves to clarify the applicants' engagement methods for their own purposes and sets them out to be judged by a team of peer reviewers, who are the gatekeepers to funding. Although rare, some funders include people with lived/living experience and caregivers as peer reviewers [<span>8</span>], who are well positioned to evaluate proposed engagement strategies. Whether lived/living experience peer reviewers are included or not, the way engagement is described in the protocol can influence the funding decision. If the engagement is poorly described and peer reviewers fear tokenistic engagement approaches, the application may be less likely to be funded. Regardless of page limits and tight application requirements, engagement can be well described in any protocol, and should be described together with lived/living experience and caregiver co-applicants or collaborators when possible.</p><p>Through our experience in writing and reviewing grant applications, we have come to recognise when engagement is well described, making it a strength of the application, versus when it is poorly described, raising fears of tokenistic, performative engagement. Based on this experience, we propose a number of recommendations to guide grant writers in effectively describing engagement in their grant applications (see Box 1). These recommendations can be generally followed regardless of the format of the funding call, to the extent possible within the limits of the application guidelines. Below, we describe an overview of how engagement might be described poorly in a grant application, which we contrast with the description of a robustly described engagement plan. In doing so, our goal is to equip researchers to optimise the engagement components of their grant applications to maximise the chances of funding, thereby increasing the amount of patient-engaged research bei","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 1","pages":""},"PeriodicalIF":3.2,"publicationDate":"2026-01-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12802554/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145967961","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Evgenia Stepanova, Matthew Cooper, Anna Robinson-Barella, Vicki Harris, Abbie Rance, Abbie Husband, David Wright, Fabi Lorencatto, Clare Tolley, Wade Tovey, Geoff Wong, Daniel Cowie, Kerry Parker, Elise Crayton, Hamde Nazar
<div> <section> <h3> Background</h3> <p>As researchers strive to conduct culturally competent and equitable research, there remains a lack of actionable guidance across the research lifecycle. Increasingly, funding bodies require evidence of such approaches, yet a clear, practical direction for effective research practice is often lacking.</p> </section> <section> <h3> Aim</h3> <p>To develop a practical framework, grounded in Meleis' cultural competence criteria, to guide all stages of the research lifecycle.</p> </section> <section> <h3> Methods</h3> <p>Databases PsycINFO, ERIC, PubMed, Web of Science Core Collection and Google Scholar were searched (August–October 2025) for English-language publications applying Meleis' framework in research contexts. Narrative and thematic analysis synthesised identified applications into draft recommendations and measures across five research stages. A modified Delphi process with 31 experts (community leads, researchers, policymakers and translators) in two survey rounds and a consensus workshop was then used to refine and finalise items, producing a co-developed framework of actionable, measurable recommendations for culturally competent research with minoritised and/or diverse groups.</p> </section> <section> <h3> Results</h3> <p>The review identified eight studies, yielding 41 applications of Meleis' criteria. These were distilled into 29 draft recommendations and measures, which were further refined through Delphi consensus to 25 recommendations and 25 measures, offering practice-ready guidance across research focus, recruitment, measurement, analysis and dissemination. Contextuality was rated critical in four stages, highlighting how cultural identities shape engagement. Language was strongly prioritised in focus, recruitment and measurement, with emphasis on diverse, well-funded interpretation and transcription strategies. Empowerment and reciprocation were noted as underused but essential for legitimacy and impact, particularly in focus and dissemination. Continuous cultural humility training was endorsed, reinforcing critiques of competence as a static skill. During consensus discussions, recommendations initially framed as optional (‘could’) were reframed as compulsory (‘should’). The final framework is available as an accessible online resource.</p> </section> <section> <h3> Conclusions</h3> <p>Using consensus, an evidence-based, culturally competent research framework was co-designed; it comprised 2
背景：随着研究人员努力进行文化胜任和公平的研究，在整个研究生命周期中仍然缺乏可操作的指导。越来越多的资助机构需要这些方法的证据，然而有效的研究实践往往缺乏一个明确的、实用的方向。目的：开发一个实用的框架，以Meleis的文化能力标准为基础，指导研究生命周期的所有阶段。方法：检索PsycINFO、ERIC、PubMed、Web of Science Core Collection和谷歌Scholar数据库（2025年8 - 10月）中应用Meleis框架进行研究的英文出版物。叙述和专题分析将确定的应用程序综合为五个研究阶段的建议和措施草案。经过修改的德尔菲过程由31位专家（社区领导、研究人员、政策制定者和翻译人员）参与两轮调查和共识研讨会，然后用于完善和最终确定项目，为少数族裔和/或不同群体的文化主管研究提供可操作的、可衡量的建议。结果：本综述确定了8项研究，产生了41项Meleis标准的应用。这些被提炼成29项建议和措施草案，并通过德尔菲共识进一步细化为25项建议和25项措施，为研究重点、招募、测量、分析和传播提供了实践就绪的指导。情境性在四个阶段中被评为关键，突出了文化身份如何塑造参与。语言在重点、招聘和衡量方面被高度重视，并强调多样化、资金充足的口译和转录策略。有人指出，授权和相互作用没有得到充分利用，但对合法性和影响，特别是在重点和传播方面，却是必不可少的。持续的文化谦逊训练得到认可，强化了对能力是一种静态技能的批评。在协商一致的讨论中，最初作为可选（“可能”）的建议被重新定义为强制性（“应该”）。最后的框架作为可访问的在线资源提供。结论：采用共识，共同设计了一个以证据为基础、具有文化竞争力的研究框架；它包括25项建议，可供研究人员、政策制定者、社区领导和其他人采取行动、衡量和适应。这个框架是朝着促进公平和有影响力的研究实践迈出的关键一步。患者或公众贡献：由三名来自少数族裔背景的患者和两名保健专业人员组成的患者和公众参与小组举行了两次会议，审查调查结果，改进组成部分，并就语言、可及性和可用性提供反馈。
{"title":"Cultural Competency in Research: A Practical Framework for Use by Researchers, Policymakers, Community Leads and Others When Working With People From Diverse Groups","authors":"Evgenia Stepanova, Matthew Cooper, Anna Robinson-Barella, Vicki Harris, Abbie Rance, Abbie Husband, David Wright, Fabi Lorencatto, Clare Tolley, Wade Tovey, Geoff Wong, Daniel Cowie, Kerry Parker, Elise Crayton, Hamde Nazar","doi":"10.1111/hex.70544","DOIUrl":"10.1111/hex.70544","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>As researchers strive to conduct culturally competent and equitable research, there remains a lack of actionable guidance across the research lifecycle. Increasingly, funding bodies require evidence of such approaches, yet a clear, practical direction for effective research practice is often lacking.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Aim</h3>\u0000 \u0000 <p>To develop a practical framework, grounded in Meleis' cultural competence criteria, to guide all stages of the research lifecycle.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Databases PsycINFO, ERIC, PubMed, Web of Science Core Collection and Google Scholar were searched (August–October 2025) for English-language publications applying Meleis' framework in research contexts. Narrative and thematic analysis synthesised identified applications into draft recommendations and measures across five research stages. A modified Delphi process with 31 experts (community leads, researchers, policymakers and translators) in two survey rounds and a consensus workshop was then used to refine and finalise items, producing a co-developed framework of actionable, measurable recommendations for culturally competent research with minoritised and/or diverse groups.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The review identified eight studies, yielding 41 applications of Meleis' criteria. These were distilled into 29 draft recommendations and measures, which were further refined through Delphi consensus to 25 recommendations and 25 measures, offering practice-ready guidance across research focus, recruitment, measurement, analysis and dissemination. Contextuality was rated critical in four stages, highlighting how cultural identities shape engagement. Language was strongly prioritised in focus, recruitment and measurement, with emphasis on diverse, well-funded interpretation and transcription strategies. Empowerment and reciprocation were noted as underused but essential for legitimacy and impact, particularly in focus and dissemination. Continuous cultural humility training was endorsed, reinforcing critiques of competence as a static skill. During consensus discussions, recommendations initially framed as optional (‘could’) were reframed as compulsory (‘should’). The final framework is available as an accessible online resource.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Using consensus, an evidence-based, culturally competent research framework was co-designed; it comprised 2","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 1","pages":""},"PeriodicalIF":3.2,"publicationDate":"2026-01-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12796843/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145960748","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Susanna Nordin, Aaron Davis, France Légaré, Allyson Jones, Louise Meijering, Marie Elf
<div> <section> <h3> Background</h3> <p>Co-design is increasingly used to involve older adults in the development of digital tools, yet less attention has been given to how to engage them effectively in these processes. Older adults represent a highly diverse population, but co-design practices often overlook this heterogeneity and rely on limited representation. Similarly, co-design approaches vary widely in structure and degree of user involvement. While evaluations often focus on outcomes such as usability and technical performance, fewer studies explore the value of participation itself.</p> </section> <section> <h3> Aim</h3> <p>This study evaluates the process of a 5-day online design sprint where participants, including older adults, healthcare and technology professionals, researchers, facilitators and business representatives, collaborated to develop housing-related digital support tools.</p> </section> <section> <h3> Methods</h3> <p>A hybrid thematic analysis process links process documentation and participant reflections with value-based frameworks to examine how different elements of the process created or inhibited value for participants.</p> </section> <section> <h3> Results</h3> <p>The findings highlight how the structure of the design sprint, together with specific facilitation practices, fostered respectful dialogue, trust, autonomy and a sense of ownership among participants. The evaluation describes how the process satisfied participants' collectively prioritised values, and their individual needs.</p> </section> <section> <h3> Conclusions</h3> <p>The study highlights that co-design is not a neutral method, but a practice with social, ethical and emotional consequences. Effective facilitation is essential to support agency, ensure psychological safety and promote authentic collaboration. Recognising the heterogeneity of older adults and aligning facilitation strategies with participants' values and needs can enhance both the relevance of digital innovations and the meaningfulness of the co-design experience itself.</p> </section> <section> <h3> Patient and Public Contribution</h3> <p>The project was supported by a reference group that was actively involved throughout. The group included, for instance, representatives from the municipality, regional authorities and a pensioners' organisation.</p> </section>
{"title":"Designing Meaningful Engagement for Older Adults: An Evaluation of Participation in a Five-Day Co-Design Sprint","authors":"Susanna Nordin, Aaron Davis, France Légaré, Allyson Jones, Louise Meijering, Marie Elf","doi":"10.1111/hex.70555","DOIUrl":"10.1111/hex.70555","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Co-design is increasingly used to involve older adults in the development of digital tools, yet less attention has been given to how to engage them effectively in these processes. Older adults represent a highly diverse population, but co-design practices often overlook this heterogeneity and rely on limited representation. Similarly, co-design approaches vary widely in structure and degree of user involvement. While evaluations often focus on outcomes such as usability and technical performance, fewer studies explore the value of participation itself.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Aim</h3>\u0000 \u0000 <p>This study evaluates the process of a 5-day online design sprint where participants, including older adults, healthcare and technology professionals, researchers, facilitators and business representatives, collaborated to develop housing-related digital support tools.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A hybrid thematic analysis process links process documentation and participant reflections with value-based frameworks to examine how different elements of the process created or inhibited value for participants.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The findings highlight how the structure of the design sprint, together with specific facilitation practices, fostered respectful dialogue, trust, autonomy and a sense of ownership among participants. The evaluation describes how the process satisfied participants' collectively prioritised values, and their individual needs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The study highlights that co-design is not a neutral method, but a practice with social, ethical and emotional consequences. Effective facilitation is essential to support agency, ensure psychological safety and promote authentic collaboration. Recognising the heterogeneity of older adults and aligning facilitation strategies with participants' values and needs can enhance both the relevance of digital innovations and the meaningfulness of the co-design experience itself.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public Contribution</h3>\u0000 \u0000 <p>The project was supported by a reference group that was actively involved throughout. The group included, for instance, representatives from the municipality, regional authorities and a pensioners' organisation.</p>\u0000 </section>\u0000 ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 1","pages":""},"PeriodicalIF":3.2,"publicationDate":"2026-01-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12793890/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145953952","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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