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.

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.

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.

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.

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.

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.

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).

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.

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.

The public and patient involvement imperative in Ireland: Building on policy drivers.

What can we learn from the history of Public and Patient Involvement (PPI) in healthcare and research across global jurisdictions? Depending on region and context, the terminology and heritage of involvement in research vary. In this paper, we draw on global traditions to explore dominant themes and key considerations and critiques pertaining to PPI in order to inform a PPI culture shift in Ireland. We then describe the heritage of PPI in Ireland and present the case for combining methodological imperatives with policy drivers to support and encourage meaningful involvement. Specifically, we propose that PPI can be enriched by the theory and processes of participatory health research (PHR); and that implementation requires concurrent capacity building. We conclude with a call for Irish researchers (authors of this paper included) to consider the conceptual complexities and nuances of a participatory approach to build on the policy imperatives driving PPI and to contribute to the international evidence base and research culture. Specifically, we call for Irish health researchers and funders to consider and reflect on: (1) the rich literature of PHR as a resource for enacting meaningful PPI; (2) the roots and origins of varying participatory health research methods; (3) how community/patient groups can lead health research; and (4) co-learning and partnership synergy to create space for both academic and community expertise; and (5) the importance of using standardized reporting tools.

Exploring the Multidimensionality of Trust in Participatory Health Partnerships - A Network Approach.

Introduction: Previous studies have identified "trust" as a key mechanism to achieve sustainable partnerships in participatory health research, which themselves can represent social networks. A recent review discussed the potential for social network analysis to investigate the development and maintenance of trust and its effects on partnership functioning in participatory health research partnerships. This review also recommended considering a comprehensive, nuanced and multidimensional approach to conceptualizing, operationalizing and measuring trust in research partnerships. Thus, this study aims to explore empirically the conceptualizing, operationalizing and measuring of trust in a multidimensional manner, approaching each trust dimension as an individual trust network, as well as combined as an overall trust network. Methods: We sampled the whole network, recruiting from a newly established network of 57 individuals that must collaborate to achieve a common goal. These individuals represented academic, service and community organizations of an existing participatory partnership, the Public and Patient Involvement Ignite Network in Ireland. Of the 57 individuals invited to take part in the study, 75% (n = 43) individuals completed the network survey. A survey about trust was designed based on literature in the area and was administered via Qualtrics. The survey included eight network questions: one on collaboration, and seven on specific dimensions of trust. From this, we constructed a network for each trust dimension. We compared several core network measures of each to identify structural differences between the dimensions of trust. To statistically validate them, we compared them to a random and preferential null model. Results: All the networks had a high reciprocity but were decentralized. Key differences were identified across trust dimensions, particularly in terms of integrity and shared values, visions and goals. None of the networks compared well to the null models indicating participants did not randomly or preferentially (based on how much trust they receive for a particular trust dimension) trust other partners. Discussion/Conclusion: This novel empirical social network analysis of trust in a real-world partnership elucidates the nuances and multidimensional nature of trust. This provides support for expanding this research direction to enhance understanding of and interventions for trust in participatory health research.

Exploring how patients, carers and members of the public are recruited to advisory boards, groups and panels as partners in public and patient involved health research: a scoping review protocol.

INTRODUCTION: Engaging patients, carers and members of the public in health research has become widely recognised as an important approach for bridging the gap between research, and health and social care by increasing the relevance of research for those who benefit from its findings. Specific approaches to engagement vary, but commonly include advisory boards, groups or patient panels that are active throughout all stages of research. The breadth of and optimal strategies for recruiting patients, carers and members of the public to such boards, groups or panels remains unclear. The objective of this manuscript is to identify the breadth of and optimal strategies used to recruit patients, carers and members of the public to advisory boards, groups or panels, within public and patient involvement (PPI) research. METHODS AND ANALYSIS: This review follows the scoping review framework by Peters et al, an elaboration on the framework by Arksey and O'Malley. The search strategy was co-developed among the research team, PPI research experts and a faculty librarian. The review will take place between July 2021 and June 2022. In July and August 2021, eight electronic databases, MEDLINE (PubMed), MEDLINE (OVID), Embase, CINAHL, PsychINFO, Scopus, Web of Science and Cochrane Library, will be explored to capture all available literature. Two independent reviewers will screen articles by title and abstract and then at full text based on predetermined criteria. The data will be presented in a tabular format with a narrative summary discussing how the research findings relate to the overarching research question. A thematic analysis will also be completed using qualitative description, identifying key themes and gaps in the literature. ETHICS AND DISSEMINATION: Ethics is not required for this review. We aim to disseminate the information gathered through presentations at academic conferences, peer-reviewed publications and consultations with lay audiences.

Conceptualising, operationalising, and measuring trust in participatory health research networks: a scoping review.

BACKGROUND: There are many described benefits of community-based participatory research (CBPR), such as increased relevance of research for those who must act on its findings. This has prompted researchers to better understand how CBPR functions to achieve these benefits through building sustainable research partnerships. Several studies have identified "trust" as a key mechanism to achieve sustainable partnerships, which themselves constitute social networks. Although existing literature discusses trust and CBPR, or trust and social networks, preliminary searches reveal that none link all three concepts of trust, CBPR, and social networks. Thus, we present our scoping review to systematically review and synthesize the literature exploring how trust is conceptualised, operationalised, and measured in CBPR and social networks. METHODS: This review follows the guidance and framework of Peters et al. which is underpinned by the widely used framework of Levac and colleagues. Levac and colleagues provided enhancements to the methodological framework of Arksey and O'Malley. We explored several electronic databases including Scopus, Medline, PubMed, Web of Science, CINAHL, Cochrane Library, Google Scholar, and PsychINFO. A search strategy was identified and agreed upon by the team in conjunction with a research librarian. Two independent reviewers screened articles by title and abstract, then by full-text based on pre-determined exclusion/inclusion criteria. A third reviewer arbitrated discrepancies regarding inclusions/exclusions. A thematic analysis was then conducted to identify relevant themes and sub-themes. RESULTS: Based on the 26 extracted references, several key themes and sub-themes were identified which highlighted the complexity and multidimensionality of trust as a concept. Our analysis revealed an additional emergent category that highlighted another important dimension of trust-outcomes pertaining to trust. Further, variation within how the studies conceptualised, operationalised, and measured trust was illuminated. Finally, the multidimensionality of trust provided important insight into how trust operates as a context, mechanism, and outcome. CONCLUSIONS: Findings provide support for future research to incorporate trust as a lens to explore the social-relational aspects of partnerships and the scope to develop interventions to support trust in 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.

Music and Movement for Health: Protocol for a pragmatic cluster-randomised feasibility pilot trial of an arts-based programme for the health and wellbeing of older adults.

Background: Arts-based health programmes (ABHP) can enhance the physical and psychosocial health and wellbeing of older people. However, the feasibility and usefulness of such programmes in Ireland are currently unknown. The primary aim of this study is to examine the feasibility of the study design, its application to a music and movement for health programme and associated costs. The secondary aim is to obtain preliminary effect estimates of an ABHP on health and wellbeing in older adults. Methods: This study is a pragmatic cluster-randomised controlled feasibility trial. Community-dwelling adults, aged 65 years or older will be recruited in the mid-west region of Ireland via methods including social prescription, traditional and social media. The clusters, based on geographical region, will be block randomised to either the ABHP or control using 1:1 allocation ratio. The programme will comprise a 1.5-hour music and dance session each week for 12-weeks together with a 1-hour home-based music and movement programme for 12-weeks. A qualitative and quantitative process evaluation of the arts-based health programme will be performed. Outcomes: Primary outcomes for feasibility include recruitment rates (the number of participants recruited per cluster per month); retention rate (the number of participants who complete measures at baseline and at follow up post intervention, and minimum average attendance. Secondary outcomes will include physical function, balance, physical activity, loneliness, social isolation, cognition, mood, as well as quality of life and cost. Conclusions: If this pioneering study finds evidence to support feasibility and acceptability, a future larger-scale definitive trial will be conducted to examine the effectiveness of an arts-based health programme for older adults. This research aims to strengthen collaborative efforts to implement effective, sustainable and cost-effective programmes for older adults to support community connection, enhancing health and wellbeing, in turn reducing demands on the healthcare system. ISRCTN registration: ISRCTN35313497 (18/02/2022).

Evidence-Based Aquatic Therapy Guidelines for Parkinson's Disease: An International Consensus Study.

BACKGROUND: Aquatic therapy is one therapy option for people living with Parkinson's disease (PD). However, the optimal prescription, dosage, and delivery remain unclear. OBJECTIVE: i) To generate consensus statements, ii) to establish evidence-based clinical practice aquatic therapy guidelines for PD. METHODS: Seventy-three international experts were invited to participate in a 3-step modified Delphi study. Gaps in the aquatic therapy evidence, patient preferences, and stakeholder engagement were considered when developing the initial list of 43-statements identified by the research development group. Practice experts rated each statement on an 11-point Likert scale. Consensus for inclusion was set at a priori of ≥70% of respondents scoring an item ≥7. Two rounds of Delphi questionnaires were completed online, and the expert comments were analyzed using content analysis. An online consensus meeting with an expert subgroup (n = 10) then advised on the guideline's acceptability and debated items until consensus for inclusion was reached. RESULTS: Fifty experts participated in the Delphi round one (83% response rate) and 45 in round two (90% response rate), representing 15 countries. In round one, 35 statements met the criteria for consensus. Content analysis informed the revised statements in round two, where 12 of the remaining 16 statements met consensus. The final agreed aquatic therapy guidelines include key information about dosage, content, safety, contraindications, and the optimal aquatic therapy delivery throughout the disease course. CONCLUSION: Stakeholders, including international practice experts, informed a rigorous evidence-based approach to integrate the best available evidence, patient preferences, and practice expertise to inform these guidelines.

Developing a Canadian evaluation framework for patient and public engagement in research: study protocol.

BACKGROUND: Patient and public engagement (PPE) in research is growing internationally, and with it, the interest for its evaluation. In Canada, the Strategy for Patient-Oriented Research has generated national momentum and opportunities for greater PPE in research and health-system transformation. As is the case with most countries, the Canadian research community lacks a common evaluation framework for PPE, thus limiting our capacity to ensure integrity between principles and practices, learn across projects, identify common areas for improvement, and assess the impacts of engagement. OBJECTIVE: This project aims to build a national adaptable framework for the evaluation of PPE in research, by: 1. Building consensus on common evaluation criteria and indicators for PPE in research; 2. Defining recommendations to implement and adapt the framework to specific populations. METHODS: Using a collaborative action-research approach, a national coalition of patient-oriented research leaders, (patient and community partners, engagement practitioners, researchers and health system leaders) will co-design the evaluation framework. We will develop core evaluation domains of the logic model by conducting a series of virtual consensus meetings using a nominal group technique with 50 patient partners and engagement practitioners, identified through 18 national research organizations. We will then conduct two Delphi rounds to prioritize process and impact indicators with 200 participants purposely recruited to include respondents from seldom-heard groups. Six expert working groups will define recommendations to implement and adapt the framework to research with specific populations, including Indigenous communities, immigrants, people with intellectual and physical disabilities, caregivers, and people with low literacy. Each step of framework development will be guided by an equity, diversity and inclusion approach in an effort to ensure that the participants engaged, the content produced, and the adaptation strategies proposed are relevant to diverse PPE. DISCUSSION: The potential contributions of this project are threefold: 1) support a national learning environment for engagement by offering a common blueprint for collaborative evaluation to the Canadian research community; 2) inform the international research community on potential (virtual) methodologies to build national consensus on common engagement evaluation frameworks; and 3) illustrate a shared attempt to engage patients and researchers in a strategic national initiative to strengthen evaluation capacity for PPE.

Key issues for participatory research in the design and implementation of humanitarian assistance: a scoping review.

BACKGROUND: Participatory approaches that engage affected populations are increasingly applied in humanitarian health programs in concert with emerging accountability frameworks and the rapid growth of research in these settings. Participatory initiatives within this domain appear to be largely adopted at an operational level and are infrequently reported as a component of research efforts. Yet the evidence of the benefits of research involving community members is growing worldwide. This is the first review of participatory research (PR) in humanitarian settings. OBJECTIVES: This study sought to understand the extent to which PR values and practices have been adopted in humanitarian health programs and to explore key issues in applying PR in this context. METHODS: This scoping review was based on the approach developed by Arksey and O'Malley. The search for relevant peer-reviewed articles included scientific databases, a humanitarian database, targeted journals and online resources published since 2009. Eleven articles were retrieved and reviewed to identify practices and key issues related to conducting PR in humanitarian settings. RESULTS: Four key themes were identified: building trust with local research stakeholders and participants; the importance of contextual understanding; implications of collaborating with affected populations in PR, and neutrality of researchers and Non-Governmental Organizations (NGOs). Study teams considered PR as a valued approach where there was mistrust or a need for contextualized understanding. The studies described how adaptations made during the study optimized collaboration with affected populations and how the presence of NGOs influenced the approach and results of PR. CONCLUSIONS: One of the most important contributions of humanitarian health programs is to develop 'medical practices that are better adapted to the living conditions and priorities of patients who are generally ignored'. Participatory approaches, such as PR, support the development of health-related practices that are more relevant and sustainable for affected populations.

Conceptualising, operationalising and measuring trust in participatory health research networks: a scoping review protocol.

INTRODUCTION: A participatory approach to co-creating new knowledge in health research has gained significant momentum in recent decades. This is founded on the described benefits of community-based participatory research (CBPR), such as increased relevance of research for those who must act on its findings. This has prompted researchers to better understand how CBPR functions to achieve these benefits through building sustainable research partnerships. Several studies have identified 'trust' as a key mechanism to achieve sustainable partnerships, which themselves constitute social networks. Although existing literature discuss trust and CBPR, or trust and social networks, preliminary searches reveal that none link all three concepts of trust, CBPR and social networks. Thus, we present our scoping review protocol to systematically review and synthesise the literature exploring how trust is conceptualised, operationalised and measured in CBPR and social networks. METHODS AND ANALYSIS: This protocol follows guidelines from Levac et al (Scoping studies: advancing themethodology. Implement Sci 2010;5:69), which follow the methodological framework of Arksey and O'Malley. This scoping review explores several electronic databases including Scopus, Medline, PubMed, Web of Science, CINAHL, Cochrane Library, Google Scholar and PsychINFO. Grey literature such as theses/dissertations and reports will be included. A search strategy was identified and agreed on by the team in conjunction with a research librarian. Two independent reviewers will screen articles by title and abstract, then by full text based on pre-determined exclusion/inclusion criteria. A third reviewer will arbitrate discrepancies regarding inclusions/exclusions. We plan to incorporate a thematic analysis. ETHICS AND DISSEMINATION: Ethics is not required for this review specifically. It is a component of a larger study that received ethical approval from the University of Limerick research ethics committee (#2018_05_12_EHS). Translation of results to key domains is integrated through active collaboration of stakeholders from community, health services and academic sectors. Findings will be disseminated through academic conferences, and peer review publications targeting public and patient involvement in health research.