Understanding the evolution of trust in a participatory health research partnership: A qualitative study.

INTRODUCTION: Advancements in evaluating the impact of participatory health research (PHR) have been made through comprehensive models like the community-based participatory research (CBPR) conceptual model, which provides a useful framework for exploring how context and partnership processes can influence health research design and interventions. However, challenges in operationalising aspects of the model limit our understanding and evaluation of the PHR process. Trust is frequently identified as an important component of the CBPR model, which supports the development of key partnership outcomes, such as partnership synergy. However, trust continues to be limited to a binary view (as present or absent), which is problematic given its inherently dynamic and temporal nature. STUDY AIM: The aim of this qualitative study is to understand the evolution of trust in the national public and patient involvement (PPI) network in Ireland. SETTING AND PARTICIPANTS: Participants from the PPI network (n = 15/21) completed a semistructured interview discussing the evolution of trust by reviewing four social network maps derived from a previous longitudinal study. ANALYSIS: Following Braun and Clarke, we used reflexive thematic analysis, to iteratively develop, analyse and interpret our mediated reflection of the data. RESULTS: Participants described the evolution of trust as a function of three contextual factors: (1) the set-up and organisation of the network, (2) how people work together and (3) reflection on the process and outcomes. Their descriptions across these themes seemed to vary depending on partnership type with National Partners and Site Leads having more opportunities to demonstrate trust (e.g., via leadership roles or more resources), compared to Local. Thus, visibility and the opportunity to be visible, depending on the set-up and organisation of the network and how people work together, seemingly play an important role in the evolution of trust over time. Based on these findings, we provide important questions for reflection across themes that could be considered for future PHR partnerships. DISCUSSION: Given that the opportunity and visibility to build and maintain trust over time may not be equally available to all partners, it is important to find ways to invest in and commit to equitable relationships as the key to the success (i.e., longevity) of partnerships. We reflect on/offer important implications for those engaging in PHR partnerships and those who fund such research. PATIENT OR PUBLIC CONTRIBUTION: A Research Advisory Group comprising four research partners (representing academic, service and community organisations) from the PPI Ignite Network provided input and approval for the research objectives of this study as well as previously published work informing this study. Informal consultation occurred with members of this group to discuss findings from this study, assisting with the way findings are presented and described, to be accessible for diverse audiences. Two Research Advisory Group members were involved in the interpretation of the results, and one is a co-author of this manuscript (Zoe Hughes).

Exploring participatory health research and its application to speech and language therapy research practices.

BACKGROUND: The role of participatory health research (PHR) is increasingly acknowledged by funding bodies, researchers and civil society globally; however, it continues to be under-represented in the speech and language therapy (SLT) research literature. This collaborative research approach is associated with the increased application of research evidence, and the generation of positive impacts in practice, policy, health systems and society. AIMS: To increase researchers' and other participatory partners' understanding of PHR, and to demonstrate its applicability to research in the SLT field. METHODS & PROCEDURES: This aim is achieved through a discussion on PHR, its principles, benefits and challenges, and the evaluation of its impact. A recently developed evaluation framework to support the implementation of best engagement practices is examined, and recommendations for how this framework can be used to plan and evaluate engagement in participatory stuttering research is presented. MAIN CONTRIBUTION: This paper serves as an important conversation on the value of PHR to SLT research, and presents guidance to support its increased implementation in this research field. CONCLUSIONS & IMPLICATIONS: Conclusions & Implications: PHR remains an under-represented research approach in the SLT literature, despite increasing evidence demonstrating its effectiveness and value. It offers a potential solution to the research-practice gap, and challenges the ongoing research hierarchies by democrating the process of knowledge production. WHAT THIS PAPER ADDS: What is already known on this subject PHR is increasingly attracting the attention of funders, researchers and decision-makers due to a growing body of evidence in support of this collaborative research approach. Despite its potential to bridge the research-practice gap, PHR remains significantly under-represented in the SLT research literature. What this paper adds to the existing knowledge This paper discusses the principles, benefits, challenges and impact evaluation of PHR. A recently developed evaluation framework for supporting the implementation of best engagement practices is examined. A demonstration of how this framework can be used to plan and evaluate engagement in participatory stuttering research is presented. What are the potential or actual clinical implications of this work? Speech and language therapists play a key role in PHR, as co-researchers contributing essential context-based knowledge. It is therefore imperative that they understand the principles and practices of this approach in order to maximize their input in future participatory partnerships.

'Down to the person, the individual patient themselves': A qualitative study of treatment decision-making for shoulder pain.

INTRODUCTION: Many inconsistencies have been identified in the translation of evidence-based treatment recommendations for musculoskeletal shoulder pain into healthcare services, with little known about factors influencing decision-making. The objective of this study was to explore the views and experiences of healthcare providers (HCPs) and people living with shoulder pain on treatment decision-making. METHODS: Adopting a qualitative design, purposeful sampling was employed to recruit 13 individuals with nonspecific musculoskeletal shoulder pain and 30 HCPs. Data were collected through 1:1 semi-structured interviews and analysed using an approach informed by Constructivist Grounded Theory. To facilitate analysis, two patient and public involvement (PPI) meetings were conducted. RESULTS: Most participants (69%) had shoulder pain of ≥1-year duration. Biomechanical beliefs about shoulder pain predominated and were heavily influential in decision-making for both patients and HCPs. Despite a consensus that therapeutic alliance facilitated decision-making, the extent of collaboration between HCPs and patients in treatment decision-making was rather limited. In addition to condition-specific factors, Individual patient characteristics and resources also influenced treatment decisions. CONCLUSION: Findings revealed the complexity of the decision-making process for both patients and HCPs, exposing substantial gaps between the reported views and experiences of participants and the principles of client-centred and evidence-based practice. There is a pressing need to enhance the translation of evidence-based knowledge into practice in this clinical area. PATIENT OR PUBLIC CONTRIBUTION: In line with a consultative approach to collaborative data analysis, a subgroup of participants attended two PPI meetings to provide commentary and feedback on preliminary findings.

How does integrated knowledge translation (IKT) compare to other collaborative research approaches to generating and translating knowledge? Learning from experts in the field.

BACKGROUND: Research funders in Canada and abroad have made substantial investments in supporting collaborative research approaches to generating and translating knowledge as it is believed to increase knowledge use. Canadian health research funders have advocated for the use of integrated knowledge translation (IKT) in health research, however, there is limited research around how IKT compares to other collaborative research approaches. Our objective was to better understand how IKT compares with engaged scholarship, Mode 2 research, co-production and participatory research by identifying the differences and similarities among them in order to provide conceptual clarity and reduce researcher and knowledge user confusion about these common approaches. METHODS: We employed a qualitative descriptive method using interview data to better understand experts' perspectives and experiences on collaborative research approaches. Participants' responses were analysed through thematic analysis to elicit core themes. The analysis was centred around the concept of IKT, as it is the most recent approach; IKT was then compared and contrasted with engaged scholarship, Mode 2 research, co-production and participatory research. As this was an iterative process, data triangulation and member-checking were conducted with participants to ensure accuracy of the emergent themes and analysis process. RESULTS: Differences were noted in the orientation (i.e. original purpose), historical roots (i.e. disciplinary origin) and partnership/engagement (i.e. role of partners etc.). Similarities among the approaches included (1) true partnerships rather than simple engagement, (2) focus on essential components and processes rather than labels, (3) collaborative research orientations rather than research methods, (4) core values and principles, and (5) extensive time and financial investment. Core values and principles among the approaches included co-creation, reciprocity, trust, fostering relationships, respect, co-learning, active participation, and shared decision-making in the generation and application of knowledge. All approaches require extensive time and financial investment to develop and maintain true partnerships. CONCLUSIONS: This qualitative study is the first to systematically synthesise experts' perspectives and experiences in a comparison of collaborative research approaches. This work contributes to developing a shared understanding of collaborative research approaches to facilitate conceptual clarity in use, reporting, indexing and communication among researchers, trainees, knowledge users and stakeholders to advance IKT and implementation science.

Can social network analysis help to include marginalised young women in structural support programmes in Botswana? A mixed methods study.

BACKGROUND: In Botswana, one fifth of the adult population is infected with HIV, with young women most at risk. Structural factors such as poverty, poor education, strong gender inequalities and gender violence render many young women unable to act on choices to protect themselves from HIV. A national trial is testing an intervention to assist young women to access government programs for returning to education, and improving livelihoods. Accessing marginalised young women (aged 16-29 and not in education, employment or training) through door-to-door recruitment has proved inefficient. We investigated social networks of young women to see if an approach based on an understanding of these networks could help with recruitment. METHODS: This mixed methods study used social network analysis to identify key young women in four communities (using in-degree centrality), and to describe the types of people that marginalised young women (n = 307) turn to for support (using descriptive statistics and then generalized linear mixed models to examine the support networks of sub-groups of participants). In discussion groups (n = 46 participants), the same young women helped explain results from the network analysis. We also tracked the recruitment method for each participant (door to door, peers, or key community informants). RESULTS: Although we were not able to identify characteristics of the most central young women in networks, we found that marginalised young women went most often to other women, usually in the same community, and with children, especially if they had children themselves. Rural women were better connected with each other than women in urban areas, though there were isolated young women in all communities. Peer recruitment contributed most in rural areas; door-to-door recruitment contributed most in urban areas. CONCLUSIONS: Since marginalised young women seek support from others like themselves, outreach programs could use networks of women to identify and engage those who most need help from government structural support programs. Methods that rely on social networks alone may be insufficient, and so a combination of approaches, including, for instance, peers, door-to-door recruitment, and key community informants, should be explored as a strategy for reaching marginalised young women for supportive interventions.

Evaluating an Indigenous health curriculum for diabetes prevention: engaging the community through talking circles and knowledge translation of results.

Background: Kahnawà:ke is a Kanien'kehá:ka (Mohawk) community in Quebec, Canada. In 1997, the community-controlled Kateri Memorial Hospital Centre in partnership with the Kahnawake Education Center, and the Kahnawake Schools Diabetes Prevention Project (KSDPP) developed an elementary school diabetes prevention health education program, aimed to increase knowledge of Type 2 diabetes, healthy eating and active lifestyles. Long-term goals for KSDPP community and school interventions are to decrease obesity and diabetes. Objectives: To evaluate the Kateri Memorial Hospital Centre Health Education Program for Diabetes Prevention (HEP) and use key principles of knowledge translation to promote understanding of results to upgrade HEP content and improve delivery. Methods: A KSDPP community-based participatory research team used mixed methods for evaluation, combining a cross-sectional survey for 23 teachers with interviews of two elementary school principals and three culturally appropriate Indigenous talking circles with HEP authors, teachers and parents. Questionnaire results were presented as descriptive statistics. The thematic textual analysis identified emerging themes from talking circles and interviews. Results: Facilitators of HEP delivery were an acknowledgement of its importance; appreciation of prepared lesson plans for teachers; and KSDPP's strong community presence. Barriers included reduced administrative support and instructional time due to competing academic demands; the need for increased Kanien'kehá:ka cultural content; and outdated resource materials. Recommendations included increasing teacher training, Kanien'kehá:ka cultural content and administrative support. Conclusion: Community researchers undertook detailed knowledge translation activities of facilitators, barriers and recommendations with hospital and education centre administrators and Kahnawà:ke community to maximize uptake of findings before external dissemination of results.

The shifting dynamics of social roles and project ownership over the lifecycle of a community-based participatory research project.

Background: . Community based participatory research (CBPR) is often initiated by academic researchers, yet relies on meaningful community engagement and ownership to have lasting impact. Little is understood about how ownership shifts from academic to community partners. Objectives: . We examined a CBPR project over its life course and asked: what does the evolution of ownership look like from project initiation by an academic (non-community) champion (T1); to maturation-when the intervention is ready to be deployed (T2); to independence-the time when the original champion steps aside (T3); and finally, to its maintenance-when the community has had an opportunity to function independently of the original academic champion (T4)? Methods: . Using sociometric (whole network) social network analysis, knowledge leadership was measured using 'in-degree centrality'. Stakeholder network structure was measured using 'centralisation' and 'core-periphery analysis'. Friedman rank sum test was used to measure change in actor roles over time from T1 to T4. Results: . Project stakeholder roles were observed to shift significantly (P < 0.005) from initiation (T1) to project maintenance (T4). Community stakeholders emerged into positions of knowledge leadership, while the roles of academic partners diminished in importance. The overall stakeholder network demonstrated a structural shift towards a core of densely interacting community stakeholders. Conclusion: . This was the first study to use Social network analysis to document a shift in ownership from academic to community partners, indicating community self-determination over the research process. Further analysis of qualitative data will determine which participatory actions or strategies were responsible for this observed change.

Engagement strategies that foster community self-determination in participatory research: Insider ownership through outsider championship.

Background: In order to maximize the benefits of community-based participatory research, effective ownership over the research process must be at least equally in the hands of the community. A previous social network analysis documented that the participatory research process shifted ownership from academic to community partners, but did not show what actions and strategies fostered this shift. Objectives: This study follows the trajectory of a community-academic partnership and asks, from the perspective of the project stakeholders, which actions and strategies over the lifespan of the research led to the observed shift in ownership and decision-making from the original external academics to the community stakeholders? Methods: Qualitative description using inductive thematic analysis. One academic and five community stakeholders identified as central in a previous social network analysis, participated in retrospective, semi-structured interviews. Results: Actions deemed to have fostered the observed shift in ownership included: existence of a strong champion; stimulating 'outside' ideas; emergence of core people; alignment of project goals with stakeholders' professional roles; involving the right people; personal qualities of the champion; trust-building; and active use of participatory engagement strategies. Conclusion: Although communities must take ownership over the research process to assure sustained action and change, a strong, trusted and accepted outside champion who actively enacts participatory engagement strategies can facilitate the participatory process and provide community stakeholders the time and support they need to achieve meaningful and sustained leadership roles. These findings have implications for how partnership research is designed and implemented, both in community and in clinical organisational settings.

Engaging with communities, engaging with patients: amendment to the NAPCRG 1998 Policy Statement on Responsible Research With Communities.

Background: In 1998, the North American Primary Care Research Group (NAPCRG) adopted a groundbreaking Policy Statement endorsing responsible participatory research (PR) with communities. Since that time, PR gained prominence in primary care research. Objectives: To reconsider the original 1998 Policy Statement in light of increased uptake of PR, and suggest future directions and applications for PR in primary care. This work contributed to an updated Policy Statement endorsed by NAPCRG in 2015. Methods: 32 university and 30 community NAPCRG-affiliated research partners, convened a workshop to document lessons learned about implementing processes and principles of PR. This document emerged from that session and reflection and discussion regarding the original Policy Statement, the emerging PR literature, and our own experiences. Results: The foundational principles articulated in the 1998 Policy Statement remain relevant to the current PR environment. Lessons learned since its publication include that the maturation of partnerships is facilitated by participatory processes that support increased community responsibility for research projects, and benefits generated through PR extend beyond research outcomes. Future directions that will move forward the field of PR in primary care include: (i) improve assessment of PR processes to better delineate the links between how PR teams work together and diverse PR outcomes, (ii) increase the number of models incorporating PR into translational research from project inception to dissemination, and (iii) increase application of PR approaches that support patient engagement in clinical settings to patient-provider relationship and practice change research. Conclusion: PR has markedly altered the manner in which primary care research is undertaken in partnership with communities and its principles and philosophies continue to offer means to assure that research results and processes improve the health of all communities.

A realist evaluation of community-based participatory research: partnership synergy, trust building and related ripple effects.

BACKGROUND: Community-Based Participatory Research (CBPR) is an approach in which researchers and community stakeholders form equitable partnerships to tackle issues related to community health improvement and knowledge production. Our 2012 realist review of CBPR outcomes reported long-term effects that were touched upon but not fully explained in the retained literature. To further explore such effects, interviews were conducted with academic and community partners of partnerships retained in the review. Realist methodology was used to increase the understanding of what supports partnership synergy in successful long-term CBPR partnerships, and to further document how equitable partnerships can result in numerous benefits including the sustainability of relationships, research and solutions. METHODS: Building on our previous realist review of CBPR, we contacted the authors of longitudinal studies of academic-community partnerships retained in the review. Twenty-four participants (community members and researchers) from 11 partnerships were interviewed. Realist logic of analysis was used, involving middle-range theory, context-mechanism-outcome configuration (CMOcs) and the concept of the 'ripple effect'. RESULTS: The analysis supports the central importance of developing and strengthening partnership synergy through trust. The ripple effect concept in conjunction with CMOcs showed that a sense of trust amongst CBPR members was a prominent mechanism leading to partnership sustainability. This in turn resulted in population-level outcomes including: (a) sustaining collaborative efforts toward health improvement; (b) generating spin-off projects; and (c) achieving systemic transformations. CONCLUSION: These results add to other studies on improving the science of CBPR in partnerships with a high level of power-sharing and co-governance. Our results suggest sustaining CBPR and achieving unanticipated benefits likely depend on trust-related mechanisms and a continuing commitment to power-sharing. These findings have implications for building successful CBPR partnerships to address challenging public health problems and the complex assessment of outcomes.

Participatory Approaches in the Context of Research Into Workplace Health Promotion to Improve Physical Activity Levels and Reduce Sedentary Behavior Among Office-Based Workers: Scoping Review.

BACKGROUND: Participatory research (PR) involves engaging in cocreation with end users and relevant stakeholders throughout the research process, aiming to distribute power equitably between the end users and research team. Engagement and adherence in previous workplace health promotion (WHP) studies have been shown to be lacking. By implementing a PR approach, the insights of end users and stakeholders are sought in the co-design of feasible and acceptable intervention strategies, thereby increasing the relevance of the research. OBJECTIVE: This scoping review aims to explore, identify, and map PR techniques and their impact when used in office-based WHP interventions designed to improve physical activity (PA) or reduce sedentary behavior (SB). METHODS: The reporting of this scoping review followed the PRISMA-ScR (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews). A systematic literature search of 5 electronic databases-Web of Science, PubMed, Scopus, Google Scholar, and OpenGrey-was conducted, searching from January 1, 1995, to February 8, 2023. In total, 2 independent reviewers first screened the retrieved articles by title and abstract, and then assessed the full texts based on the inclusion and exclusion criteria. The search strategy and eligibility criteria were developed and guided by an a priori population (office-based working adults), intervention (a PA WHP intervention that took a PR approach), comparison (no comparison required), and outcome (PA or SB) framework. Data were charted and discussed via a narrative synthesis, and a thematic analysis was conducted. The included studies were evaluated regarding the degree of end user engagement throughout the research process and power shared by the researchers, using Arnstein's ladder of citizen participation. RESULTS: The search retrieved 376 records, of which 8 (2.1%) met the inclusion criteria. Four key strategies were identified: (1) end user focus groups, (2) management involvement, (3) researcher facilitators, and (4) workplace champions. The degree of engagement and power shared was relatively low, with 25% (2/8) of the studies determined to be nonparticipation studies, 25% (2/8) determined to be tokenistic, and 50% (4/8) determined to provide citizen power. CONCLUSIONS: This review provides a foundation of evidence on the current practices when taking a PR approach, highlighting that previous office-based PA WHP studies have been largely tokenistic or nonparticipative, and identified that the end user is only engaged with in the conception and implementation of the WHP studies. However, a positive improvement in PA and reduction in SB were observed in the included studies, which were largely attributed to implementing a PR approach and including the end user in the design of the WHP intervention. Future studies should aim to collaborate with workplaces, building capacity and empowering the workforce by providing citizen control and letting the end users "own" the research for a sustainable WHP intervention. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2021-054402.

Antecedents and Consequences of Health Literacy among Refugees and Migrants during the First Two Years of COVID-19: A Scoping Review.

Supporting refugee and migrant health has become a critical focus of healthcare policy. Developing and designing health literacy interventions that meet the needs of refugees and migrants is core to achieving this objective. This literature review sought to identify antecedents and consequences of health literacy among refugees and migrants during the first two years of the COVID-19 pandemic. We systematically searched nine electronic databases and numerous grey literature sources to identify studies published between December 2019 and March 2022. The antecedents (societal and environmental determinants, situational determinants, and personal determinants) and consequences of health literacy among refugees and migrants were mapped to a validated integrated health literacy model. Social and environmental determinants (n = 35) were the most reported antecedent influencing health literacy among refugees and migrants during the first two years of COVID-19. Language (n = 26) and culture (n = 16) were these determinants' most frequently reported aspects. Situational determinants (n = 24) and personal determinants (n = 26) were less frequently identified factors influencing health literacy among refugees and migrants. Literacy (n = 11) and socioeconomic status (n = 8) were the most frequently reported aspects of personal determinants. Media use (n = 9) and family and peer influence (n = 7) were the most cited situational determinants reported. Refugees and migrants with higher levels of health literacy were more likely to use healthcare services, resulting in better health outcomes. The findings of this review reveal personal and situational factors that impacted health literacy among refugees and migrants during COVID-19 that require attention. However, the inadequate adaptation of health literacy interventions for linguistic and cultural diversity was a greater problem. Attention to this well-known aspect of public health preparedness and tailoring health literacy interventions to the needs of refugees and migrants during pandemics and other public health emergencies are paramount.

Series: Public engagement with research. Part 2: GPs and primary care researchers working inclusively with minoritised communities in health research to help address inequalities.

Public engagement in health research is vital for addressing health disparities and promoting inclusivity among minoritised communities who often face barriers to accessing healthcare. Minoritised communities are groups, which have been made minorities by a dominant culture, race, ethnic group and/or social class and may experience health inequalities as a result. By incorporating diverse perspectives and lived experiences of minoritised communities, this approach aims to achieve contextually relevant research outcomes that reduce health inequalities and improve overall well-being. However, underrepresentation and lack of inclusivity challenges persist, necessitating the establishment of inclusive partnerships and grassroots participatory methodologies.To foster inclusive public engagement, it is important to overcome structural and cultural barriers, address socioeconomic challenges, and build trust with minoritised communities. This can be achieved by promoting a cultural shift that values inclusivity, providing comprehensive training to researchers, and collecting rigorous data on engagement demographics for transparency and accountability. Involving minoritised communities in decision-making through participatory research approaches enhances trust and yields successful outcomes. Additionally, allocating sufficient resources, collaborating in co-production, and prioritising the diverse needs and perspectives of stakeholders contribute to fostering inclusive public engagement in research.Overall, inclusive engagement practices particularly in primary care research have the potential to reduce health inequalities and cater to the unique requirements of minoritised communities, thereby creating more impactful outcomes and promoting equitable healthcare access.

There is an important need to engage with minoritised communities in primary care researchEngaging diverse communities in research helps produce relevant research to address health inequalities.The exclusion of minoritised communities from research can be addressed by taking action towards more inclusive engagement.

Findings from a pragmatic cluster randomised controlled feasibility trial of a music and dance programme for community dwelling older adults.

INTRODUCTION: Functional decline, chronic illness, reduced quality of life and increased healthcare utilisation are common in older adults. Evidence suggests music and dance can support healthy ageing in older adults. This study explored the feasibility, potential for effect and cost effectiveness of the Music and Movement for Health (MMH) programme among community-dwelling older adults using a pragmatic cluster-randomised, controlled feasibility trial design. METHODS: Community-dwelling adults aged 65 years or older were recruited to seven clusters in the Mid-West region of Ireland. Clusters were block randomised to either the MMH intervention or control. Primary feasibility outcomes included recruitment, retention, adherence, fidelity, and safety. Secondary outcomes measured physical activity, physical and cognitive performance, and psychosocial well-being, along with healthcare utilisation were assessed at baseline and after 12 weeks. RESULTS: The study successfully met feasibility targets, with recruitment (n = 100), retention (91 %), adherence (71 %), data completeness (92 %) and intervention fidelity (21 out of 24) all meeting predetermined criteria. Both groups exhibited an increase in self-reported physical activity and improved physical function. Participants in the intervention group scored consistently better in psychosocial measures compared to the control group at follow-up. The health economic analysis confirmed the feasibility of the methodology employed and points to the potential cost-effectiveness of the MMH relative to the control or no organised programme. DISCUSSION AND IMPLICATIONS: The MMH intervention and study design were found to be feasible and acceptable with important findings to inform future evaluation of the clinical and cost-effectiveness of a definitive randomised controlled trial.

Perspectives of People with Stroke, Caregivers and Healthcare Professionals on an Adaptive mHealth Intervention for Physical Activity in the Prevention of Secondary Stroke: A Qualitative Study.

Introduction: Engaging in regular physical activity (PA) is associated with lower mortality following stroke, and PA reduces the chance of recurrent stroke. Despite recent guidelines to optimise PA following stroke, people with stroke are known to be less active than their age-matched counterparts. Given the heterogenous nature of stroke, adaptive PA interventions are recommended for people with stroke. Empirical data is lacking on adaptive PA or behavioural change interventions following stroke. Suggested strategies in the prevention of stroke recommend the use of mobile health (mHealth) interventions in the primary prevention of stroke. A structured stakeholder consultation process is key to successful implementation of complex interventions. This paper reports the findings of our consultation process to inform the development of an adaptive mHealth PA. Methods: We used a qualitative study design to explore the perspectives of key stakeholders on the development of an adaptive PA intervention delivered via mHealth post-stroke. Healthcare workers, carers and people with stroke participated in semi-structured one-to-one or focus group interviews. A reflexive thematic analysis was undertaken on transcribed interviews; key themes and sub-themes were developed using coding and summarised by two researchers, then reviewed by the full research team. Results: Twenty-eight stakeholders were interviewed and three main themes were identified; Key feature of a mHealth intervention, delivering a mHealth intervention, Challenges to development and use. There was widespread agreement across stakeholder groups that an adaptive mHealth PA intervention following stroke would be beneficial to people with stroke, following discharge from acute care. Conclusion: Our consultation supports the development of an adaptive PA programme that addresses specific impairments that can hinder exercise participation after stroke.

Sequential multiple assignment randomised trial to develop an adaptive mobile health intervention to increase physical activity in people poststroke in the community setting in Ireland: TAPAS trial protocol.

INTRODUCTION: Stroke is the second-leading cause of death and disability globally. Participation in physical activity (PA) is a cornerstone of secondary prevention in stroke care. Given the heterogeneous nature of stroke, PA interventions that are adaptive to individual performance are recommended. Mobile health (mHealth) has been identified as a potential approach to supporting PA poststroke. To this end, we aim to use a Sequential Multiple Assignment Randomised Trial (SMART) design to develop an adaptive, user-informed mHealth intervention to improve PA poststroke. METHODS AND ANALYSIS: The components included in the 12-week intervention are based on empirical evidence and behavioural change theory and will include treatments to increase participation in Structured Exercise and Lifestyle or a combination of both. 117 participants will be randomly assigned to one of the two treatment components. At 6 weeks postinitial randomisation, participants will be classified as responders or non-responders based on participants' change in step count. Non-responders to the initial treatment will be randomly assigned to a different treatment allocation. The primary outcome will be PA (steps/day), feasibility and secondary clinical and cost outcomes will also be included. A SMART design will be used to evaluate the optimum adaptive PA intervention among community-dwelling, ambulatory people poststroke. ETHICS AND DISSEMINATION: Ethical approval has been granted by the Health Service Executive Mid-Western Ethics Committee (REC Ref: 026/2022). The findings will be submitted for publication and presented at relevant national and international academic conferences TRIALS REGISTRATION NUMBER: NCT05606770.

An integrative review protocol on interventions to improve users' ability to identify trustworthy online health information.

BACKGROUND: The epidemiological transition phenomena drive the attention to focus the scope on health literacy as it has an impact on patients' health outcomes and quality of life. AIM: This paper aims to explore the implemented interventions for improving users' ability to identify trustworthy online health information. METHODOLOGY: A comprehensive search of the literature will be conducted on the following electronic bibliographic databases: Ovid Medline, Embase, Cochrane database, Academic search complete and APA psycinfo. Further, manual search of eligible studies reference lists will be carried out to identify other eligible studies. The search strategy will include a combination of three key blocks of terms, namely: (adult OR adults) Or (patient OR patients) OR (layperson OR laypersons) OR (caregiver OR caregivers), (Intervention OR Interventions) OR Educational programs OR (health literacy And curriculum) OR Community outreach OR Interactive workshops OR (Online portal OR Patient Portals), and information seeking behavior OR consumer health information OR online information OR social media OR access to information. The results of these categories will then be combined using the AND connector. Two independent reviewers will screen and assess data quality. Disagreements will be resolved by consensus. Due to the anticipated methodological pluralism of the potentially eligible studies, a narrative synthesis of the findings on interventions aimed at improving users' ability to identify trustworthy online information will be provided according to the pre-identified thematic areas. Furthermore, a narrative synthesis of the reported barriers and facilitators for applying these interventions by end users. EXPECTED RESULTS AND IMPACT: Given that the focus of our review findings is on understanding the breadth and depth of the global research into interventions to improve users' ability to identify trustworthy online health information. The findings will be of great value to inform future innovative approaches to promote identification of trustable online sources for young people worldwide.

Recruitment of patients, carers and members of the public to advisory boards, groups and panels in public and patient involved health research: a scoping review.

OBJECTIVES: The objectives of this scoping review are to: (1) identify the distribution of and context of the recruitment strategies used, (2) explore the facilitators, benefits, barriers and ethical issues of the identified recruitment strategies, (3) distinguish the varying terminology for involvement (ie, panels, boards, individual) and (4) determine if the individual recruitment strategies used were to address issues of representation or bias. DESIGN: A scoping review. SETTING: This scoping review follows the framework by Peters et al. Seven electronic databases were explored including Scopus, Medline, PubMed, Web of Science, CINAHL, Cochrane Library and PsycINFO (conducted July 2021). The search strategy was codeveloped among the research team, PPI research experts and a faculty librarian. Two independent reviewers screened articles by title and abstract and then at full text based on predetermined criteria. PRIMARY AND SECONDARY OUTCOME MEASURES: Explore recruitment strategies used, facilitators, benefits, barriers and ethical issues of the identified recruitment strategies. Identify terminology for involvement. Explore recruitment strategies used to address issues of representation or bias. RESULTS: The final sample was from 51 sources. A large portion of the extracted empirical literature had a clinical focus (37%, n=13) but was not a randomised control trial. The most common recruitment strategies used were human networks (78%, n=40), such as word of mouth, foundation affiliation, existing networks, clinics or personal contacts. Within the reviewed literature, there was a lack of discussion pertaining to facilitators, benefits, barriers and ethical considerations of recruitment strategies was apparent. Finally, 41% (n=21) of studies employed or proposed recruitment strategies or considerations to address issues of representation or bias. CONCLUSION: We conclude with four key recommendations that researchers can use to better understand appropriate routes to meaningfully involve patients, carers and members of the public to cocreate the evidence informing their care.

Designing infographics in health research with patients and the public: A scoping review protocol.

Information graphics or infographics combine visual representations of information or data with text. They have been used in health research to disseminate research findings, translate knowledge and address challenges in health communication to lay audiences. There is emerging evidence of the design of infographics with the involvement of patients and the public in health research. Approaches to involvement include public and patient involvement, patient engagement and participatory research approaches. To date, there has been no comprehensive review of the literature on the design of infographics with patients and the public in health research. This paper presents a protocol and methodological framework for a scoping review to identify and map the available evidence for the involvement of patients and the public in infographics design in health research. It has been informed by preliminary searches and discussions and will guide the conduct and reporting of this review.

Uncovering the benefits of participatory research: implications of a realist review for health research and practice.

CONTEXT: Participatory research (PR) is the co-construction of research through partnerships between researchers and people affected by and/or responsible for action on the issues under study. Evaluating the benefits of PR is challenging for a number of reasons: the research topics, methods, and study designs are heterogeneous; the extent of collaborative involvement may vary over the duration of a project and from one project to the next; and partnership activities may generate a complex array of both short- and long-term outcomes. METHODS: Our review team consisted of a collaboration among researchers and decision makers in public health, research funding, ethics review, and community-engaged scholarship. We identified, selected, and appraised a large-variety sample of primary studies describing PR partnerships, and in each stage, two team members independently reviewed and coded the literature. We used key realist review concepts (middle-range theory, demi-regularity, and context-mechanism-outcome configurations [CMO]) to analyze and synthesize the data, using the PR partnership as the main unit of analysis. FINDINGS: From 7,167 abstracts and 591 full-text papers, we distilled for synthesis a final sample of twenty-three PR partnerships described in 276 publications. The link between process and outcome in these partnerships was best explained using the middle-range theory of partnership synergy, which demonstrates how PR can (1) ensure culturally and logistically appropriate research, (2) enhance recruitment capacity, (3) generate professional capacity and competence in stakeholder groups, (4) result in productive conflicts followed by useful negotiation, (5) increase the quality of outputs and outcomes over time, (6) increase the sustainability of project goals beyond funded time frames and during gaps in external funding, and (7) create system changes and new unanticipated projects and activities. Negative examples illustrated why these outcomes were not a guaranteed product of PR partnerships but were contingent on key aspects of context. CONCLUSIONS: We used a realist approach to embrace the heterogeneity and complexity of the PR literature. This theory-driven synthesis identified mechanisms by which PR may add value to the research process. Using the middle-range theory of partnership synergy, our review confirmed findings from previous PR reviews, documented and explained some negative outcomes, and generated new insights into the benefits of PR regarding conflicts and negotiation between stakeholders, program sustainability and advancement, unanticipated project activity, and the generation of systemic change.