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

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 network

Development of the Physical Activity Interactive Recall (PAIR) for Aboriginal children

Background: Aboriginal children in Canada are at increased risk for type 2 diabetes. Given that physical inactivity is an important modifiable risk factor for type 2 diabetes, prevention efforts targeting Aboriginal children include interventions to enhance physical activity involvement. These types of interventions require adequate assessment of physical activity patterns to identify determinants, detect trends, and evaluate progress towards intervention goals. The purpose of this study was to develop a culturally appropriate interactive computer program to self-report physical activity for Kanien'kehá:ka (Mohawk) children that could be administered in a group setting. This was an ancillary study of the ongoing Kahnawake Schools Diabetes Prevention Project (KSDPP). Methods: During Phase I, focus groups were conducted to understand how children describe and graphically depict type, intensity and duration of physical activity. Sixty-six students (40 girls, 26 boys, mean age = 8.8 years, SD = 1.8) from four elementary schools in three eastern Canadian Kanien'kehá:ka communities participated in 15 focus groups. Children were asked to discuss and draw about physical activity. Content analysis of focus groups informed the development of a school-day and non-school-day version of the physical activity interactive recall (PAIR). In Phase II, pilot-tests were conducted in two waves with 17 and 28 children respectively to assess the content validity of PAIR. Observation, videotaping, and interviews were conducted to obtain children's feedback on PAIR content and format. Results: Children's representations of activity type and activity intensity were used to compile a total of 30 different physical activity and 14 non-physical activity response choices with accompanying intensity options. Findings from the pilot tests revealed that Kanien'kehá:ka children between nine and 13 years old could answer PAIR without assistance. Content validity of PAIR was judged to be adequate. PAIR was judged to be comprehensive, acceptable, and enjoyable by the children. Conclusions: Results indicate that PAIR may be acceptable to children between nine and 13 years old, with most in this age range able to complete PAIR without assistance. The flexibility of its programming makes PAIR an easily adaptable tool to accommodate diverse populations, different seasons, and changing trends in physical activity involvement

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’Malle. 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 high-lighted 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 partnershi

Impact in participatory health research

The idea for this special issue arose from the first International Scientific Meeting on the Impact of Participatory Health Research organized by the International Collaboration for Participatory Health Research (ICPHR), the German Network for Participatory Health Research (PartNet), the Institute of Population and PublicHealth,Canadian Institutes ofHealth Research (CIHR), and Community-Based Research Canada (CBRC). The conference took place in June 2015 at the Center for Interdisciplinary Research (ZiF) in Bielefeld, Germany. Experts in PHR from eleven countries met to launch an international discussion on what impact means in the participatory research process, how to maximize the impact of the research, and how to observe and document what impact has occurred. Several of the themes discussed at the conference are addressed in this issue

‘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. Bio mechanical 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

A needs assessment informs development of a participatory research faculty development workshop

University-based researchers are finding they need a new set of skills to collaborate meaningfully with non-academic research partners, and to compete for funding opportunities that require community and end-user partnerships. This article describes a needs assessment conducted to develop a participatory research faculty development workshop at McGill University in Montreal, Quebec, Canada. This assessment and faculty development workshop design process distinguished the varying needs of potential participants based on the types of partnerships they were interested in forming, and their pre-existing participatory research competence

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. </p

Cree youth engagement in health planning

Indigenous communities experience a greater burden of ill health than all other communities in Canada. Across the Eeyou Istchee territory of northern Quebec, all nine James Bay Cree communities experience similar health challenges. In 2014, the Cree Health Board (CHB) supported an initiative to stimulate local community prioritization for health change. While many challenges identified were specific to youth (10-29 years of age), youth’s perspectives in these reports to date have been limited. We sought to understand how Cree youth perceived youth health and their engagement in health and health planning across Eeyou Istchee. As part of a CHB-McGill partnership, this qualitative descriptive study adopted a community-based participatory research approach. Cree community partners recruited ten Cree youth to participate in two focus groups, and five Cree youth coordinators to participate in key informant interviews. Thematic analysis was conducted and inductive codes were grouped into themes. Cree participants characterized youth engagement into the following levels: participation in community and recreational activities; membership in youth councils at the local and regional levels; and, in decision-making as planners of health-related initiatives. Cree youth recommended greater use of social media, youth assemblies, and youth planners to strengthen their engagement and youth health in the region. Our findings revealed an interconnectedness between youth health and youth engagement; Cree youth described how they need to be engaged to be healthy and need to be healthy to be engaged. Cree participants contributed novel and practical insights to engage Indigenous youth in health planning across Canada

Successful strategies to engage research partners for translating evidence into action in community health: a critical review

Objectives. To undertake a critical review describing key strategies supporting development of participatory research (PR) teams to engage partners for creation and translation of action-oriented knowledge. Methods. Sources are four leading PR practitioners identified via bibliometric analysis. Authors’ publications were identified in January 1995–October 2009 in PubMed, Embase, ISI Web of Science and CAB databases, and books. Works were limited to those with a process description describing a research project and practitioners were first, second, third, or last author. Results. Adapting and applying the “Reliability Tested Guidelines for Assessing Participatory Research Projects” to retained records identified five key strategies: developing advisory committees of researchers and intended research users; developing research agreements; using formal and informal group facilitation techniques; hiring co-researchers/partners fromcommunity; and ensuring frequent communication. Other less frequentlymentioned strategies were also identified. Conclusion. This review is the first time these guidelines were used to identify key strategies supporting PR projects. They proved effective at identifying and evaluating engagement strategies as reported by completed research projects. Adapting these guidelines identified gaps where the tool was unable to assess fundamental PR elements of power dynamics, equity of resources, and member turnover. Our resulting template serves as a new tool to measure partnerships

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