Health Expectations最新文献

{"title":"The 'Public' in Public Involvement: A Call to Centre Frontline Staff Voices in Health Workforce Research.","authors":"Yingxi Zhao, Justin Aunger, Hilary Garrett, Paul Hewitson, Alun Davies, Manish Pareek, Sassy Molyneux","doi":"10.1111/hex.70616","DOIUrl":"10.1111/hex.70616","url":null,"abstract":"<p><p>Public involvement, or patient and public involvement and engagement (PPIE), is widely embedded in health and care research and is valued for its moral, ethical, and methodological contributions. However, its application in workforce research raises important questions about the voices that might be missing from the 'public' when research's primary object of inquiry is healthcare staff, organisations, and systems, rather than patients and service users. This viewpoint explores tensions arising from the extension of standardised public involvement requirements, which were originally developed for research where patients and service users are the primary target of focus, into workforce-focused studies. We argue that while patient and public perspectives remain crucial, the lived experience and voices of frontline staff are often under-recognised in existing involvement frameworks, including those used in NIHR domestic programmes, as they are not fully accommodated within either public involvement or stakeholder engagement activities. We therefore call for greater clarity, flexibility, and, where appropriate, expansion in how public involvement is conceptualised and operationalised in workforce research, to better centre the voices of frontline staff. Rather than offering definitive solutions, we invite debate and future research on how public involvement can be made more meaningful, proportionate, and fit-for-purpose in health and care workforce research. PATIENT OR PUBLIC CONTRIBUTION: This viewpoint article is written by researchers in the health and care workforce, PPIE, and community engagement, and a public contributor with interest and experience of involvement in health and care workforce research. We drew on our respective perspectives and experience to shape the framing and arguments presented in this viewpoint.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":"e70616"},"PeriodicalIF":3.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13045428/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147521819","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}

{"title":"Co-Creating Preconception Health Content for a Digital Resource for Women From Diverse Ethnic Backgrounds.","authors":"Asvini K Subasinghe, Sanduni Madawala, Dinali Fernando, Jue Xie, Jessica Watterson, Ling Wu, Chris Prawira, Patrick Olivier, Jacqueline A Boyle","doi":"10.1111/hex.70542","DOIUrl":"10.1111/hex.70542","url":null,"abstract":"<p><strong>Introduction: </strong>Planning pregnancy and optimal health prior to pregnancy can significantly reduce pregnancy complications and poor maternal health outcomes. Women from culturally and racially marginalised groups experience more unintended pregnancies, increased preconception risk factors and adverse pregnancy outcomes, including maternal and infant mortality, compared to native born Australians. Improving health literacy through culturally relevant and accessible resources may improve preconception health. We have previously shown that women from migrant and refugee backgrounds would prefer receiving preconception information on digital platforms. The aim of this study is to understand the focus and concerns of the women with regard to the content for a digital resource called 'BabyReady?'.</p><p><strong>Methods: </strong>We conducted virtual workshops with 10 women from East Asian, South Asian, Central Asian, Middle-Eastern, and African backgrounds to understand more about cultural practices related to pregnancy preparation, preconception information sources and to identify topics that may be useful to include on a digital dashboard. Focus group discussions were transcribed and a content analysis was conducted.</p><p><strong>Results: </strong>A range of culturally specific practices included eating warm foods, using acupuncture and alternative medicines to prepare for pregnancy. Expectations from family and friends induced high levels of stress and feeling controlled. Relatives were integral in decision making about pregnancy planning, particularly the mother-in-law. Women wanted to learn more about egg freezing, government benefits, adverse birth outcomes, how to navigate the healthcare system, interpreter services and where they could locate female health professionals.</p><p><strong>Conclusion: </strong>Digital preconception health content may be optimised for use by women from ethnically diverse backgrounds if it includes information around stress management, how to balance cultural expectations and beliefs with health advice, how to locate female health practitioners who speak their language and appropriate pregnancy planning.</p><p><strong>Patient or public contribution: </strong>The public participated in workshops providing feedback on what digital culturally responsive preconception health content means to them and how best to integrate it into a digital health dashboard.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":"e70542"},"PeriodicalIF":3.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13066709/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147646960","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}

{"title":"'If You Don't Fight for Yourself, No One Else Will': An In-Depth Interpretative Phenomenological Analysis of Rare Disorder Care Advocacy in Aotearoa New Zealand.","authors":"Lucy Bennett, Tara N Officer","doi":"10.1111/hex.70668","DOIUrl":"10.1111/hex.70668","url":null,"abstract":"<p><strong>Introduction: </strong>Rare disorders are not rare, collectively affecting around 300 million people worldwide. Rare disorders vary in aetiology, symptomology, and treatment, yet people living with them experience common challenges relating to diagnosis, information access, healthcare access, and support. This research explores the lived experiences of navigating networks of care for people living with rare disorders and their carers. Prior research in this area, particularly in Aotearoa New Zealand, is scant, meaning that it is difficult to clearly understand experiences of navigating rare disorder care and how they might be improved.</p><p><strong>Methods: </strong>Eleven people living with rare disorders and four carers were recruited to participate in interviews through the Rare Disorders New Zealand Facebook page. Relational mapping interviews were used, with participants speaking about their networks of care, while also drawing maps to represent them. The analysis of these data was informed by interpretative phenomenological analysis.</p><p><strong>Results: </strong>Participants described their roles in advocating for rare disorder care. People living with rare disorders often saw themselves as isolated and experiencing the brunt of their condition, while carers depicted the isolation as conjoint. Participants acknowledged that advocacy was a central element of their experiences but described it as a reluctant fight or a responsibility they had to take on, while also identifying the unique challenges of advocacy in the context of Aotearoa New Zealand.</p><p><strong>Conclusion: </strong>This research has implications for rare disorder policy; strategies are suggested that could be implemented to improve rare disorder care, including increasing the information and support available to people living with rare disorders and their carers in Aotearoa New Zealand, to validate and strengthen their roles as advocates. It also lays a foundation for future research into rare disorder care experiences, highlighting the value of multi-method data collection approaches and the need for more research around areas of intersectionality.</p><p><strong>Patient or public contribution: </strong>Rare Disorders New Zealand, the national representative body of people living with rare disorders and their families, supported this research, including its promotion through their social media channels. Participants could review and amend their data, and a Māori advisor was available to guide data analysis from Māori participants.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":"e70668"},"PeriodicalIF":3.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13092502/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147724604","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}

{"title":"'Beyond the Prescription': An Arts-Based Study of Older Adults Living With HIV and Their Primary Care Experiences in Ontario.","authors":"Kristina M Kokorelias, Stephanie Posa, Dean Valentine, Erica Dove, Christine Sheppard, Gordon Arbess, Andrew D Eaton, Luxey Sirisegaram","doi":"10.1111/hex.70610","DOIUrl":"10.1111/hex.70610","url":null,"abstract":"<p><strong>Background: </strong>Older adults living with HIV face unique healthcare challenges due to the intersection of aging, stigma and chronic illness management. While advances in HIV treatment have increased life expectancy, healthcare systems have not fully adapted to address the complexities of aging with HIV.</p><p><strong>Methods: </strong>This study utilised an using an arts-informed and community-based participatory qualitative approach to engage older adults living with HIV in Toronto, Ontario, Canada. Participants created visual and narrative representations to describe their experiences with primary care providers, including physicians, nurses, pharmacists and geriatricians. Thematic and visual analysis frameworks were employed to analyse the data and identify key themes in their healthcare encounters.</p><p><strong>Participants and setting: </strong>The study involved 12 older adults living with HIV who were receiving care in Toronto, Ontario, Canada. Participants were selected using purposive sampling to ensure a diverse range of experiences.</p><p><strong>Results: </strong>Key findings highlight systemic gaps in provider expertise, fragmented care and time constraints that hinder the delivery of holistic, person-centred care. Participants emphasised the importance of trust, culturally competent care and team-based healthcare models in improving their healthcare experiences. Despite these challenges, participants expressed hope for a more inclusive, integrated approach to aging with HIV.</p><p><strong>Conclusions: </strong>The study underscores the need for healthcare systems to adopt innovative models of care that recognise the lived experiences of older adults with HIV and promote equitable access to primary care. Arts-based research revealed the emotional, social and structural dimensions of healthcare interactions, contributing valuable insights for improving primary care for aging populations with complex health needs.</p><p><strong>Patient or public contribution: </strong>Older adults living with HIV were actively involved throughout this study. An HIV advisory committee, including individuals with lived experience, clinicians, community leaders and policymakers, helped shape the study design, guide recruitment, interpret findings and review manuscript drafts. A peer-researcher co-facilitated data collection and contributed to analysis. Participants also reviewed a summary of preliminary findings to ensure their perspectives were accurately reflected.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":"e70610"},"PeriodicalIF":3.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147505542","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Getting It Out There: Reflections on the Process and Impact of Public Engagement Activities in a Study on End-of-Life Care Planning With People With Intellectual Disabilities.","authors":"Andrea Bruun, Amanda Cresswell, David Jeffrey, Leon Jordan, Richard Keagan-Bull, Jo Giles, Sarah Swindells, Meg Wilding, Nicola Payne, Gemma Allen, Rhidian Hughes, Elizabeth Tilley, Sarah L Gibson, Rebecca Anderson-Kittow, Irene Tuffrey-Wijne","doi":"10.1111/hex.70653","DOIUrl":"10.1111/hex.70653","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Introduction: &lt;/strong&gt;Many tools and interventions developed from research projects are not properly implemented in health and social care practice. Engaging with stakeholders is an important part of the implementation process when developing, sharing and embedding new tools. The Victoria & Stuart Project was a 2-year project that co-designed a toolkit of resources and approaches to support end-of-life care planning for people with intellectual disabilities. It had an inclusively delivered dissemination and engagement workstream to raise awareness of the toolkit throughout the project. In this paper, we describe and reflect on the project's public 'inspiring and informing' engagement activities.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;Engagement activities included a project website, weekly blog and newsletter. The project held webinars and was promoted on various social media platforms. One-to-one stakeholder consultations with all members of the project's Research Advisory Group were held. Presentations were given to both academic and non-academic audiences.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Engagement activities were labour-intensive and time-consuming, particularly when creating regular content such as weekly blogs and social media posts. It became obvious that team members did not have expertise in marketing or communication skills and had to learn from experience. In addition, it was difficult to build and maintain a following with a changing social media landscape. There is evidence that the project is on its way to meet the project's engagement-related medium-term outcomes, such as being included in national palliative care reports and accreditation programmes as well as international guidelines.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusion: &lt;/strong&gt;Public engagement is a complex, uncertain and non-linear undertaking, requiring continual reflection and refinement in response to changing circumstances within and beyond the research. We believe a key driver for successful engagement has been employing researchers with intellectual disabilities as well as working actively with core stakeholders throughout the project. Our engagement recommendations are: (1) Involve people with lived experience; (2) Plan and allocate time; (3) Include social media and/or marketing roles in research; (4) Tailor to the audience and platform; (5) Make it engaging and fun; (6) Learn how to make videos; (7) Keep presenting your work; and (8) Make time for stakeholder consultations.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Patient or public contribution: &lt;/strong&gt;The research team included four researchers with intellectual disabilities (A.C., D.J., L.J. and R.K.-B.). Researchers with intellectual disabilities have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings, including engagement activities. Palliative care and intellectual disability service provider representatives (G.A., M.W., N.P., R.H. and S.S.) have been closely i","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":"e70653"},"PeriodicalIF":3.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13125717/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147522788","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}

{"title":"The Development and Acceptability of a Psychology-Based Intervention for Debilitating Symptom Complexes Attributed to Ticks.","authors":"Anita L Dharan, Valerie M Z Yap, Richard A Kanaan, Georgina Oliver, Yen D Y Sim, Sabine Braat, Georgia Cotter, Mary Lou Chatterton, Cathrine Mihalopoulos, Sarah J Wilson, Trudie Chalder","doi":"10.1111/hex.70634","DOIUrl":"10.1111/hex.70634","url":null,"abstract":"<p><strong>Background: </strong>Debilitating Symptom Complexes Attributed to Ticks (DSCATT) is a chronic, debilitating illness associated with tick bites in Australia. DSCATT is of unknown aetiology, can impact emotional well-being and has no recognised treatments.</p><p><strong>Objective: </strong>The development and piloting of a novel psychotherapeutic adjunctive intervention for DSCATT that aimed to increase daily functioning, improve quality of life and reduce the impact of symptoms in people with DSCATT.</p><p><strong>Methods: </strong>This is a single-site, intervention development and acceptability study. The intervention was developed iteratively according to a Human-Centred Design (HCD) approach and manualised across four phases, with input from end users at each phase: qualitative interviews, development of the intervention, piloting, and revising and refining the intervention. Acceptability of the prototype intervention was evaluated through thematic template analysis of exit interviews. Self-report measures were completed before and after intervention delivery.</p><p><strong>Results: </strong>Following qualitative interviews with 13 participants (11 females and 2 males; aged 35-70 years), the intervention was informed by an Acceptance and Commitment Therapy (ACT) model interwoven with cognitive and behavioural strategies that targeted DSCATT-specific difficulties. The manualised intervention consisted of 12 1-h weekly individual sessions, delivered by psychologists via Telehealth (video call or telephone). Modules addressed the six core psychological processes of ACT, alongside DSCATT-specific modules addressing cognitive function, sleep and social relationships. Pilot testing and follow-up interviews were conducted in a separate sample of six individuals with DSCATT (all females; aged 46-71 years). All participants reported that the approach benefited their emotional well-being and overall health and would recommend it to others with DSCATT.</p><p><strong>Conclusions: </strong>This is a novel and theoretically driven psychotherapeutic intervention for DSCATT, co-produced with patient involvement across four phases. Pilot testing suggested the manualised intervention was feasible and acceptable, supporting future evaluation of feasibility and treatment outcomes with randomised controlled trials.</p><p><strong>Patient or public contribution: </strong>This study involved the engagement and participation of individuals with DSCATT across four stages of the project, according to an HCD approach-the choice of the intervention; the development of the intervention; the piloting of the intervention, and the assessment of the intervention.</p><p><strong>Trial registration: </strong>The pilot study component of this project was prospectively registered on the Australian and New Zealand Clinical Trial Registry (ANZCTR); trial ID: ACTRN12621001032842.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":"e70634"},"PeriodicalIF":3.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13080887/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147445984","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}

{"title":"Co-Designing a Social Media and Anxiety Survey: Reflections on the Importance of Centring Mental Health Lived Experience Expertise.","authors":"Sharon Lawn, Kerri M Gillespie, Aakanksha Sahu, Stephanie J Tobin, Vasundhara Shukla, Rachael Burns, Joanne Cockle, Amrita Dasvarma, Aislin Gleeson, John Milham, Robyn Priest, Puneet Sansanwal, Ashton Spradbury, Anna Zhang, Christine Kaine, Selena E Bartlett","doi":"10.1111/hex.70677","DOIUrl":"https://doi.org/10.1111/hex.70677","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Introduction: &lt;/strong&gt;This study explores a collaborative co-design process undertaken with people with lived experience expertise (PLEE), to develop a survey investigating experiences of social media and anxiety. The research is the first step in a larger project across five countries (Australia, the United Kingdom, India, Canada and Singapore) that will seek to validate whether passive smartphone analytics and codesigned ethical protocols can underpin a scalable culturally inclusive AI chatbot that detects and mitigates anxiety based on smartphone use.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;Through three iterative co-design workshops, conducted in Australia, facilitated by and involving people with lived experience of mental health conditions, insights were gathered on psychological, social, and structural mechanisms by which social-media use influences anxiety.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Co-design workshop members strongly challenged the research team within five important themes: (1) reframing risk and safety that involved 'calling out' disempowering and discriminatory language inherent in survey processes and existing validated measures; (2) social media as both harm and Haven that emphasised social media as both a source of anxiety and a lifeline for connection for this population; (3) designing for inclusion, accessibility, and safety to ensure survey usability and psychological safety for future participants; (4) transparency, power, and representation to ensure lived experience involvement meant shared ownership, avoided tokenism, included First Nations leadership; and (5) broadening the lens - cultural, physical, and socio-economic factors involved urging a holistic view of the person and a systems view of anxiety and technology.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusion: &lt;/strong&gt;By involving people with mental health lived experience expertise in the design process, this study was able to co-create recommendations to strengthen the project's survey design, ethical framework, and implementation plan. The co-design approach ensured the social media and anxiety survey met the specific needs of the target group and was trauma-informed, promoting trust, engagement and feasibility. Future research will aim to focus on gathering insights from similar lived experience co-design workshops in the United Kingdom, India, Canada and Singapore to refine the AI Chatbot prototype and evaluating its effectiveness in a broader study. This study underscores the crucial role of mental health lived experience expertise in research that seeks to test digital solutions for people who experience anxiety exacerbated by social media use.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Patient and public contribution: &lt;/strong&gt;People with lived experience of a mental health condition contributed throughout the design, analysis and write-up of this work as members of a Lived Experience Advisory Panel (LEAP) which met over a series of co-design sessions. The co-design was led by a mental health lived ex","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":"e70677"},"PeriodicalIF":3.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13108405/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147789881","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}

{"title":"Co-Developing User-Centred Nutrition Educational Resources to Integrate Nutrition Into Multiple Sclerosis Care: A Collaborative Approach With Healthcare Professionals and Healthcare Consumers.","authors":"Shoroog Allogmanny, Yasmine Probst, Karen Zoszak, Anita Stefoska-Needham","doi":"10.1111/hex.70656","DOIUrl":"10.1111/hex.70656","url":null,"abstract":"<p><strong>Introduction: </strong>Nutrition is often overlooked in multiple sclerosis (MS) care, leading to a gap in comprehensive patient management. Developing MS-specific nutrition educational resources could address this gap. This study therefore aimed to collaboratively develop MS-specific nutrition educational resources with healthcare professionals (HCPs) and people living with MS (plwMS) to support the future integration of nutrition into MS care.</p><p><strong>Methods: </strong>A three-phased qualitative study was conducted, guided by the Design Thinking framework. Phase 1 involved separate online workshops with HCPs and plwMS, alongside semi-structured interviews with HCPs, to explore needs and challenges related to nutrition in MS care, and to generate solution-focused ideas for resource development. Phase 2 focused on developing prototypes. Phase 3 included usability testing of the co-developed prototypes through online and face-to-face interviews with HCPs and plwMS. Data from Phases 1 and 3 were analysed using an inductive, reflexive thematic analysis.</p><p><strong>Results: </strong>Two workshops (n = 9 HCPs; n = 14 plwMS) and ten HCP interviews were conducted in Phase 1, generating four themes: (1) Addressing healthcare barriers to providing nutrition education in MS care; (2) Supporting person-centred nutrition communication; (3) Fostering equity through accessible and inclusive MS-specific educational resources; and (4) The integral role of the dietitian in MS care. A set of new nutrition-resource prototypes, informed by Phase 1 theme-based design considerations, was co-developed and hosted on a website (Phase 2). In Phase 3, 18 HCPs and 15 plwMS provided feedback on the prototypes, grouped across four themes: (1) Clear, targeted messaging; (2) Visually and informative design; (3) Lived experiences; and (4) Trust, credibility and connection, suggesting that the design of user-centred educational resources can drive action, support decision-making and enhance user trust. These insights informed resource refinements for colour, language clarity, content relevance and navigation options to support their adoption into MS care.</p><p><strong>Conclusion: </strong>This study co-developed MS-specific nutrition educational resources to integrate nutrition into MS care. Future research should evaluate their applicability and effectiveness in real-world settings.</p><p><strong>Patient or public contribution: </strong>An MS consumer panel was consulted during the planning phase, and HCPs and plwMS contributed throughout the design process, including feedback on Phase 1 findings and prototypes.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":"e70656"},"PeriodicalIF":3.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13051993/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147610694","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}

{"title":"Empowering Rural Communities to Measure Walkability: Co-Development of a Digital Tool.","authors":"Verity Cleland, Sharon Campbell, Georgia McGrath, Claire Morley, Melanie Davern, Anna Timperio, Kate Garvey, Yvonne Laird, Samantha Rowbotham, Lynden Leppard, Kim Jose","doi":"10.1111/hex.70661","DOIUrl":"10.1111/hex.70661","url":null,"abstract":"<p><strong>Background: </strong>Local neighbourhood environments are important for shaping walkability, but few instruments exist to assess walkability in rural areas. Furthermore, there are no existing tools that have been designed with and for communities to collect local data on walkability, which has the potential to empower communities with ownership and knowledge of the resulting information.</p><p><strong>Objective: </strong>This paper aimed to describe the development and evaluation of a digital tool designed to measure walkability in rural areas.</p><p><strong>Methods: </strong>The Communities for Walkability (C4W) digital tool was co-developed by researchers and community members. Sixty-one community members in 10 small rural Tasmanian towns conducted 80 street segment audits and/or participated in workshops; 16 participants engaged in semi-structured interviews. Geospatial assessments of walkability were completed using Geographic Information Systems (GIS). Qualitative data were content/thematically analysed and quantitative data analysed descriptively. Exploratory analysis was performed to assess correlations between geospatially assessed walkability and a range of audit scores.</p><p><strong>Results: </strong>It was feasible for citizen scientists to collect data using the largely acceptable digital tool, with some areas for improvement identified, particularly the conflict between the sequential nature of tool items and the non-sequential nature of attributes encountered during data collection, the inability to review/save findings, and technical difficulties uploading photographs. Exploratory analysis revealed some correlations between geospatially assessed walkability and safety, commercial land use, and perceived overall walkability; however, the small sample size and exploratory nature of analyses suggest cautious interpretation.</p><p><strong>Conclusions: </strong>Although feasible and acceptable for rural communities to collect walkability data using a citizen science approach, future digital walkability tools should allow greater flexibility for real-time data collection, provide streamlined systems for uploading photographs, and include review and save features. The inclusion of citizen perspectives in the design and collection of local data has the potential to be a powerful mechanism to support communities and stakeholders to engage in collective efforts and create environments that support walkability.</p><p><strong>Patient or public contribution: </strong>Members of the public were involved in this study in four key ways: co-development of the digital walkability tool, data collection using the digital walkability tool, sense-making and interpretation of findings from the digital walkability tool, and through interviews providing feedback on the tool.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":"e70661"},"PeriodicalIF":3.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13066715/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147646923","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}

{"title":"Progress Through Engagement: A Systematic Review and Thematic Synthesis of Qualitative Community-Based Participatory Research in Vision Impairment.","authors":"Aikaterini Tavoulari, Jibraan Kidwai, Michael J Proulx, Karin Petrini","doi":"10.1111/hex.70640","DOIUrl":"10.1111/hex.70640","url":null,"abstract":"<p><strong>Background: </strong>Vision impairment (VI) presents complex challenges that extend beyond clinical measures, affecting individuals' mental health, social participation and quality of life. Traditional research often overlooks these lived realities, prompting a growing interest in community-based participatory research (CBPR) as a more inclusive and impactful approach.</p><p><strong>Methods: </strong>This systematic review examines the scope, frequency and methodological characteristics of CBPR studies involving people with VI, with a focus on qualitative research published between 1993 and 2024. Following PRISMA guidelines and PROSPERO registration, included studies were identified across diverse cultural contexts and participatory depths, from consultation to collaboration and user-driven design. Using a dual-stage thematic synthesis, we explored both the methodological approaches ('how') and the substantive content themes ('what') addressed in these studies. Participatory methods included photography and narrative storytelling, focus groups, creative workshops and final consultations, with many studies employing methodological triangulation. Although the search covered the period 1993-2024, all included studies were published between 2014 and 2024, reflecting the recent emergence of CBPR approaches in VI research.</p><p><strong>Results: </strong>Twelve studies met the inclusion criteria and were included in the final synthesis. Thematic findings revealed barriers to accessibility, cultural misalignment in interventions and the importance of user-led adaptation strategies, showing that despite growing interest, CBPR remains underutilised in VI research.</p><p><strong>Conclusion: </strong>This review highlights its potential to bridge gaps between clinical innovation and lived experience, offering a roadmap for more equitable, context-sensitive and user-centred research practices.</p><p><strong>Patient or public contribution: </strong>Patients and members of the public were not directly involved in the design, conduct, or analysis of this systematic literature review. Instead, the study focus and synthesis were informed by documented experiences of people with vision impairment, derived from community-based participatory studies, which contributed to the development of patient-centred health material design.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":"e70640"},"PeriodicalIF":3.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13125725/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147583164","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}