Karen S Sagun, Paul Edward N Muego, Maria Eliza R Aguila
{"title":"Co-analysis in virtual spaces: engaging children with disabilities, families, and the community as research partners in low-resource settings.","authors":"Karen S Sagun, Paul Edward N Muego, Maria Eliza R Aguila","doi":"10.1186/s40900-026-00892-7","DOIUrl":"https://doi.org/10.1186/s40900-026-00892-7","url":null,"abstract":"<p><strong>Background: </strong>Traditional disability studies often overlook children with disabilities, their families, and communities from analytical processes, particularly in low-resource settings. This methodological paper describes co-analysis conducted across virtual spaces with marginalized stakeholders as partners in data interpretation, examining whether participatory approaches can address epistemic injustices while navigating resource constraints in urban Philippine communities.</p><p><strong>Methods: </strong>Children were engaged in data-gathering through a mosaic approach (storytelling, drawing, photo elicitation, interview) across 24 individual virtual sessions, while adults participated in eight (8) online focus groups. We employed a four-pronged co-analysis approach with 49 participants from a community-based rehabilitation (CBR) program for urban low-resource communities: eight (8) children with disabilities aged 9-16 years, 18 parents, nine (9) CBR workers, and 14 local organization members. The co-analysis approach comprised: (1) participant-directed methodology, (2) grassroots epistemology, (3) iterative partnership building, and (4) collective reflexivity addressing researcher positionality.</p><p><strong>Results: </strong>Co-analysis revealed four insights. First, layered accessibility is essential for inclusion, combining universal design with disability-specific scaffolding. Second, co-analysis itself creates hierarchies as analytical frameworks privilege certain cognitive and communication abilities despite accessibility adaptations. We argue for epistemic pluralism, recognizing different ways of analytical contribution. Third, virtual spaces generated different hierarchies rather than eliminating them. Fourth, structural inequities persisted despite methodological innovation, as digital access, economic precarity, and cognitive demands reproduced exclusions our methodology aimed to dismantle.</p><p><strong>Conclusions: </strong>Achieving epistemic justice through co-analysis requires institutional resources, researcher humility that values diverse analytical contributions, and acknowledgment that participatory methods may expand access but cannot overcome structural inequalities without concurrent shifts in power and resources.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2026-05-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147864649","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Alysha L Deslippe, Molly Byrne, Oonagh Meade, Eimear Morrissey, Tamara R Cohen
{"title":"Community engagement in the creation of a novel dietary intervention for high school athletes: methods to include teen athletes and coaches in feasible ways.","authors":"Alysha L Deslippe, Molly Byrne, Oonagh Meade, Eimear Morrissey, Tamara R Cohen","doi":"10.1186/s40900-026-00898-1","DOIUrl":"https://doi.org/10.1186/s40900-026-00898-1","url":null,"abstract":"<p><strong>Purpose: </strong>Teen athletes (13-18 years) have elevated nutrient requirements but consistently demonstrate limited knowledge of their dietary needs for sport. This knowledge gap contributes to a high prevalence of dietary behaviours that do not align with current recommendations, increasing an athlete's risk of injury, impaired growth and hindered performance. To address this gap, we collaborated with teen athletes and coaches who are involved in school sports to co-create a novel dietary intervention designed to be delivered in schools. As existing literature offers limited guidance on how to navigate inherent power dynamics between teen athletes and coaches during co-creation, this paper outlines the methods we used to minimize these dynamics while developing the dietary intervention's delivery route, content and name, with the aim of informing other co-creation processes.</p><p><strong>Methods: </strong>Two independent panels were established: One comprising teen athletes (n = 8) and the other, coaches (n = 7). Panelists were recruited from a single school in Vancouver (Canada), and represented a diversity of sports, ages, and sexes. Each panel met independently on a bi-monthly over 18 months. A single facilitator guided each panel through a simultaneous consensus-building process to inform dietary intervention development. Panelists received an honorarium for their time.</p><p><strong>Results: </strong>Five strategies were used to facilitate dietary intervention development: (1) Alternating which panel met first; (2) Leveraging tasks to panelists lived experiences; (3) Tailoring activities to panelists' developmental maturity; (4) Outlining decision-making authority; and (5) Keeping identities unknown. These strategies enabled panelists to collaboratively determine the dietary intervention's delivery route (i.e., an app), name (i.e., PLAYTE), logo and key features (Diet tracking, Recipe library, Sport nutrition videos and Mood, energy and hunger tracking). Future study planning tasks were also completed during the collaborative process.</p><p><strong>Conclusions: </strong>Two independent panels can feasibly be used to co-create a dietary intervention. Future co-creation processes involving groups with innate power dynamics, like teen athletes and coaches, should consider leveraging dual-panel approaches to facilitate transparent decision-making in meaningful ways.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2026-05-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147843997","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Ravi Patel, Ben Woodhouse, Amr Selim, Robin Banerjee, Niall Steele, Edward Dickenson, Rajpal Nandra, Sarah L Whitehouse, Adele Higginbottom, Johnathan T Evans, Geraint Thomas
{"title":"Patient and Public involvement to understand and inform the co-design of how we communicate mortality risk for patients aged 90 and over considering elective total hip replacement (THR).","authors":"Ravi Patel, Ben Woodhouse, Amr Selim, Robin Banerjee, Niall Steele, Edward Dickenson, Rajpal Nandra, Sarah L Whitehouse, Adele Higginbottom, Johnathan T Evans, Geraint Thomas","doi":"10.1186/s40900-026-00900-w","DOIUrl":"https://doi.org/10.1186/s40900-026-00900-w","url":null,"abstract":"<p><strong>Background: </strong>Patient and Public Involvement and Engagement (PPIE) is integral to ensuring health research remains grounded in patient priorities and lived experience. This is especially critical for underrepresented groups, such as adults aged 90 and over considering elective total hip replacement (THR). This demographic experiences a small but meaningful risk of postoperative mortality, yet conventional numeric risk communication often fails to align with their values, communication preferences, and the existential context of very advanced age. Traditional PPIE methods, like focus groups, may inadvertently exclude this group due to sensory, mobility, or digital barriers.</p><p><strong>Methods: </strong>This PPIE activity engaged eight public contributors aged 90-96 years with lived experience of total hip replacement or caring for someone who underwent it (including two carers) through semi-structured one-to-one telephone conversations, aligned with the GRIPP2 Short Form and UK Standards for Public Involvement. We detail our approach to building rapport and facilitating nuanced conversations remotely, focusing on three domains: research context, communication preferences, and decision-making. Our methodology was designed to prioritise relationship-building and flexibility to overcome barriers to participation.</p><p><strong>Results: </strong>Inductive review of facilitator notes identified three central themes: 1.A Pragmatic Conceptualisation of Risk: Participants framed mortality risk as an acceptable \"chance you take,\" shaped by life experience and advanced age.2.Values-Based Decision-Making: Quality of life outcomes: mobility, independence, and maintaining an optimistic outlook were prioritised over longevity alone.3.The Imperative for Compassionate Communication: Participants emphasised a need for clear, respectful, and multi-modal communication, while explicitly rejecting ageist or overly clinical language. Contributors unanimously affirmed the importance of this topic, feeling that as an underserved community, their perspectives on mortality were both valuable in decision making and long overdue.</p><p><strong>Limitations: </strong>This PPIE activity involved a small number of contributors and used telephone-only engagement. While this ensured accessibility, it may limit transferability to other contexts. Future work should test alternative formats and include larger, more diverse samples to enhance generalisability to the nonagenarian populations. Nonetheless, the rich feedback insights from this unrepresented group provide a valuable foundation for future work.</p><p><strong>Conclusions: </strong>The findings challenge the primacy of numerical risk presentation for this demographic, underscoring that communication must prioritise dignity, optimism, and clarity. Crucially, contributors affirmed that discussing mortality is a necessary part of informed consent, countering assumptions that this topic should be avoided. Th","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2026-05-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147844027","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Agata Pacho, Clara Martins de Barros, Carole Lamouline, Mustafa Al-Haboubi, Paul Boadu, Nicholas Mays
{"title":"When xenotransplantation enters the conversation: reflections on public involvement in research on a novel and controversial technology.","authors":"Agata Pacho, Clara Martins de Barros, Carole Lamouline, Mustafa Al-Haboubi, Paul Boadu, Nicholas Mays","doi":"10.1186/s40900-026-00894-5","DOIUrl":"https://doi.org/10.1186/s40900-026-00894-5","url":null,"abstract":"<p><strong>Background: </strong>Xenotransplantation (XT) is being explored as a potential solution to organ shortages. Driven by revived scientific interest, XT has sparked debates that remain ethically charged. While much literature focuses on why community engagement is needed, this paper examines how XT itself reshapes the public involvement. We reflect on collaboration between researchers and public contributors during development of a national survey on UK public attitudes towards XT. Co-written by researchers and contributors, the paper draws on meeting notes and email exchanges to examine how XT shaped group dynamics.</p><p><strong>Main body: </strong>We argue that XT is not only a biomedical innovation but also a disruptive force in public involvement in research in three ways. First, as a distant prospect, it permits asking philosophical rather than merely practical questions. Second, its scientific uncertainty may unsettle the expert-public divide, fostering shared curiosity and speculation. Third, XT's emergent status makes visible how research may shape what XT becomes. Working on the development of the survey, we were thus not only engaging with XT's content but also reflecting on their role in its unfolding. Our reflections highlight how focus on technologies that remain in exploratory phases can reshape researcher-contributor dynamics by flattening hierarchies. While often framed through technological determinism, XT was instead experienced as contingent, something open to questioning, negotiation, and resistance. Rather than being the sole domain of experts, it appeared amenable to influence through research and public involvement.</p><p><strong>Conclusion: </strong>XT, being a novel and controversial technology, unsettles conventional models of public involvement in research, opening new possibilities for participation and challenging assumptions about its purpose and dynamics.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2026-05-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13137622/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147843974","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Phyu Hnin Hlaing, Phaik Yeong Cheah, Soe Thandar Myint, Smith Boonchutima
{"title":"Co-designing a study on a health interventions with Myanmar migrant workers to address work-related musculoskeletal disorders in Thailand's seafood industry.","authors":"Phyu Hnin Hlaing, Phaik Yeong Cheah, Soe Thandar Myint, Smith Boonchutima","doi":"10.1186/s40900-026-00891-8","DOIUrl":"https://doi.org/10.1186/s40900-026-00891-8","url":null,"abstract":"<p><strong>Background: </strong>Myanmar migrant workers in Thailand's seafood processing industry develop work-related musculoskeletal disorders from tasks such as repetitive shrimp peeling and standing for extended periods. These workers remain largely unreached by standard health interventions due to language barriers and cultural isolation. Developing effective study for this vulnerable population requires meaningful involvement of workers in the study design process, recognizing their experiential expertise while acknowledging the distinct roles of researchers and community members. This paper documents how involvement with stakeholders such as migrant workers themselves shaped the co-design of a study testing a culturally appropriate digital health intervention for managing existing symptoms and preventing progression of musculoskeletal disorders.</p><p><strong>Methods: </strong>This was a mixed-methods co-design study combining qualitative community engagement with quantitative expert validation. We conducted engagement sessions with 29 Myanmar migrant workers, organized into three groups by length of work experience (less than 2 years, 2-5 years, more than 5 years). We engaged 5 workplace stakeholders (human resource managers and production line supervisors) and consulted 4 international physical therapy experts for validation. Sessions were structured as conversations. Workers provided substantial input on intervention content, delivery methods, and practical requirements for the planned study. We accommodated their 12-hour work schedules, communicated in Myanmar language, and valued their experiential knowledge as essential for culturally appropriate study design. Thematic analysis identified key themes from worker input. Expert validators assessed the co-designed intervention using Content Validity Index (CVI) methodology.</p><p><strong>Results: </strong>All participating workers reported hand symptoms including numbness, tingling, and pain. Workers expressed preferences for health information through platforms they used daily, with Facebook emerging as the clear preference over text-based materials or in-person workshops on their only day off. These insights shaped the study intervention: a 4-week intervention with 12 progressive exercises addressing observed strain patterns: forward-leaning postures and repetitive hand movements. Workers specified practical requirements such as exercises must function in small dormitory spaces, outside work hours, without equipment. The peer challenge format emerged from their suggestions about sustained engagement. The co-designed study intervention achieved strong content validity scores from expert validators (I-CVI: 0.95-1.00; S-CVI/Ave: 0.94). The engagement process also highlighted ethical considerations when working with vulnerable migrant populations, including managing power differentials and protecting workers from potential workplace repercussions.</p><p><strong>Conclusions: </strong>Worker","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2026-04-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147783690","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Listening to those who know: The Need for forming advisory boards with lived experiences in global mental health research.","authors":"Kripa Sigdel","doi":"10.1186/s40900-026-00888-3","DOIUrl":"https://doi.org/10.1186/s40900-026-00888-3","url":null,"abstract":"","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2026-04-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13112652/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147783716","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Lisa Tracy Morrison, Anne McGlade, Carole Anne Kirk, Ian Burnside, Gavin Davidson
{"title":"Turning the tables: creating space for lived experience leadership in research.","authors":"Lisa Tracy Morrison, Anne McGlade, Carole Anne Kirk, Ian Burnside, Gavin Davidson","doi":"10.1186/s40900-026-00881-w","DOIUrl":"https://doi.org/10.1186/s40900-026-00881-w","url":null,"abstract":"","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":"12 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2026-04-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13112753/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147783829","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Faye Forsyth, Peter Hartley, Jonathan Mant, Scott Rowbotham, John Sharpley, Alison Wood, Christi Deaton
{"title":"A critical reflective analysis of patient and public involvement in a programme of heart failure with preserved ejection fraction research.","authors":"Faye Forsyth, Peter Hartley, Jonathan Mant, Scott Rowbotham, John Sharpley, Alison Wood, Christi Deaton","doi":"10.1186/s40900-026-00867-8","DOIUrl":"https://doi.org/10.1186/s40900-026-00867-8","url":null,"abstract":"<p><strong>Introduction: </strong>There are very few reports of patient and public involvement (PPI) initiatives in cardiovascular disease research and even fewer in heart failure, the eventual end point of many cardiovascular conditions. This report describes and critically appraises a PPI endeavor conducted during a programme of work focused on designing a multi-component diet and exercise intervention for people with Heart Failure with preserved Ejection Fraction (HFpEF).</p><p><strong>Methods: </strong>This is a retrospective analysis and critical reflection of field notes and formal communication documents (produced during PPI meetings, n = 3) and transcripts (produced during workshops, n = 3) collected throughout the HFpEF research programme (PRESERVE-HFpEF).</p><p><strong>Results: </strong>PPI had a substantial effect on this project both in terms of the content of the intervention and on the researchers' perceptions and skills in conducting meaningful PPI. For example, the dietary interventions envisioned within the intervention (caloric restriction, low carbohydrate and high protein), which were based on a meta-analysis of effects we (the authors) performed, were not deemed to be appealing nor feasible by PPI contributors. Many of the researcher related learning points we identified during the analysis, for example practical arrangements that maximize participation, allowing for more open dialogue and being mindful of scientific biases, were not obvious until they were subjected to an interrogative 'critical' process.</p><p><strong>Conclusions: </strong>To build a foundation of good practice and evidence of the potential impact of PPI in cardiovascular disease research, we need further descriptions of the involvement process. This reflection is one of very few reports describing how PPI was enacted in heart failure research and what the impacts were. We hope that it will provide other researchers with some insight into how (or how not to) approach and deliver PPI in their research journey.</p><p><strong>Clinical trial number: </strong>Not applicable.</p><p><strong>Patient or public contribution: </strong>People with heart failure with preserved ejection fraction were involved throughout the lifespan of this project. They participated in the PPI meetings and workshops where the direction of the research was discussed and their opinions and expertise were sought, initially through consultation type methods and later via consultation with co-production overtones. One member (JS) contributed to data analysis and interpretation; and provided critical feedback on emerging ideas and drafts of this report.</p>","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2026-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147718355","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Carolyn Blair, Adrian Slee, Clare McKeaveney, Alexander P Maxwell, Faizan Awan, Malcolm Brown, Marion Carson, Sinead Comer, Andrew Davenport, Damian Fogarty, Denis Fouque, Oonagh Gooding, Teresa McKinley, Carolyn Hutchinson, Kamyar Kalantar-Zadeh, Karen Magee, Neal Morgan, Robert Mullan, Helen Noble, Sam Porter, David S Seres, Joanne Shields, Ian Swaine, Miles D Witham, Joanne Reid
{"title":"Using a generative co-design framework to adapt an exercise intervention as part of a multimodal intervention for patients' receiving haemodialysis with or at risk of renal cachexia.","authors":"Carolyn Blair, Adrian Slee, Clare McKeaveney, Alexander P Maxwell, Faizan Awan, Malcolm Brown, Marion Carson, Sinead Comer, Andrew Davenport, Damian Fogarty, Denis Fouque, Oonagh Gooding, Teresa McKinley, Carolyn Hutchinson, Kamyar Kalantar-Zadeh, Karen Magee, Neal Morgan, Robert Mullan, Helen Noble, Sam Porter, David S Seres, Joanne Shields, Ian Swaine, Miles D Witham, Joanne Reid","doi":"10.1186/s40900-026-00875-8","DOIUrl":"https://doi.org/10.1186/s40900-026-00875-8","url":null,"abstract":"","PeriodicalId":36999,"journal":{"name":"Research Involvement and Engagement","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2026-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147718394","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}