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Material practices for meaningful engagement: An analysis of participatory learning and action research techniques for data generation and analysis in a health research partnership.

ABSTRACT: The material practices which researchers use in research partnerships may enable or constrain the nature of engagement with stakeholder groups. Participatory learning and action (PLA) research approaches show promise, but there has been no detailed analysis of stakeholders' and researchers' experiences of PLA techniques for data generation and co-analysis.To explore stakeholders' and researchers' experiences of PLA techniques for data generation and co-analysis.The EU RESTORE implementation science project employed a participatory approach to investigate and support the implementation of guidelines and training initiatives (GTIs) to enhance communication in cross-cultural primary care consultations. We developed a purposeful sample of 78 stakeholders (migrants, general practice staff, community interpreters, service providers, service planners) from primary care settings in Austria, England, Greece, Ireland and The Netherlands. We used speed evaluations and participatory evaluations to explore their experiences of two PLA techniques-Commentary Charts and Direct Ranking-which were intended to generate data for co-analysis by stakeholders about the GTIs under analysis. We evaluated 16 RESTORE researchers' experiences using interviews. We conducted thematic and content analysis of all evaluation data.PLA Commentary Charts and Direct Ranking techniques, with their visual, verbal and tangible nature and inherent analytical capabilities, were found to be powerful tools for involving stakeholders in a collaborative analysis of GTIs. Stakeholders had few negative experiences and numerous multifaceted positive experiences of meaningful engagement, which resonated with researchers' accounts.PLA techniques and approaches are valuable as material practices in health research partnerships.

SUBMITTER: O'Reilly-de Brun M

PROVIDER: S-EPMC5750692 | biostudies-other | 2018 Feb

REPOSITORIES: biostudies-other

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Material practices for meaningful engagement: An analysis of participatory learning and action research techniques for data generation and analysis in a health research partnership.

O'Reilly-de Brún Mary M de Brún Tomas T O'Donnell Catherine A CA Papadakaki Maria M Saridaki Aristoula A Lionis Christos C Burns Nicola N Dowrick Chris C Gravenhorst Katja K Spiegel Wolfgang W Van Weel Chris C Van Weel-Baumgarten Evelyn E Van den Muijsenbergh Maria M MacFarlane Anne A

Health expectations : an international journal of public participation in health care and health policy 20170825 1

<h4>Background</h4>The material practices which researchers use in research partnerships may enable or constrain the nature of engagement with stakeholder groups. Participatory learning and action (PLA) research approaches show promise, but there has been no detailed analysis of stakeholders' and researchers' experiences of PLA techniques for data generation and co-analysis.<h4>Objectives</h4>To explore stakeholders' and researchers' experiences of PLA techniques for data generation and co-analy ...[more]

PMID: 28841753

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Project description:IntroductionAdvancements 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 aimThe 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 participantsParticipants 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.AnalysisFollowing Braun and Clarke, we used reflexive thematic analysis, to iteratively develop, analyse and interpret our mediated reflection of the data.ResultsParticipants 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.DiscussionGiven 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 contributionA 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).

Project description:IntroductionDespite the widely recognized ethical and practical benefits of community engagement in HIV research, epistemic injustice persists within the field. Namely, the knowledge held by communities disproportionately affected by HIV is systematically afforded less credibility than that of more privileged academic researchers. In order to illustrate what this looks like in practice, we synthesized the extent of reporting on community engagement within recent high-impact HIV intervention research papers. However, we also posit that the HIV research sector has the potential to devise and showcase world-leading examples of equitable research-community partnerships and suggest actionable key steps to achieving this goal.DiscussionIn the absence of reporting requirements within the publishing process, it is difficult to infer whether and how the community have been consulted in the design, implementation, analysis and/or interpretation of findings. As an illustrative exercise, we offer a rapid synthesis of the extent of reporting on community engagement in HIV research from 2017 to 2019, which highlighted sporadic and very low rates of reporting of community engagement in recent high-impact HIV intervention studies. Of note is that none of the included studies reported on community engagement through all stages of the research process. There were also discrepancies in how community involvement was reported. We provide three actionable recommendations to enhance reporting on community engagement in HIV research: (1) community-led organizations, researchers and scientific journals should band together to develop, publish and require adherence to standardized guidelines for reporting on community involvement in HIV research; (2) research funders should (continue to) require details about how relevant communities have been engaged prior to the submission of funding requests; and (3) researchers should take proactive measures to describe their engagement with community organizations in a clear and transparent manner.ConclusionsThere is a clear and urgent need for guidelines that facilitate transparent and consistent reporting on community engagement in HIV intervention research. Without standardized reporting requirements and accountability mechanisms within the research sector, the extent of meaningful community engagement cannot be established and may remain a catchphrase rather than reality.

Project description:BackgroundIn 2019, our interdisciplinary team of researchers, family members, and youth co-designed four simulation training videos and accompanying facilitation resources to prepare youth, family members, trainees, and researchers to build the knowledge and skills to engage in patient-oriented research (POR) authentically and meaningfully. Videos covered challenges in aspects of the research process including (1) forming a project team; (2) identifying project objectives and priorities; (3) agreeing on results; and (4) carrying out knowledge translation.MethodsThe purpose of the study was to deliver four simulation training videos across 2 two-hour facilitated workshops with researchers, trainees, and family partners. We evaluated whether the training videos and facilitated discussion of the simulations helped to improve knowledge and attitudes about authentic and meaningful partnership in research and self-perceived ability to engage in POR. An explanatory sequential two-phase mixed methods design was used. Phase 1 (quantitative) included two training workshops and a pre/post-training survey. Phase 2 (qualitative) included two qualitative focus groups. Results of each phase were analyzed separately and then combined during interpretation.ResultsSixteen individuals (including researchers/research staff, trainees, family members, clinicians) took part in this research study. Overall, participants were highly receptive to the training, providing high scores on measures of acceptability, appropriateness, and feasibility. While the training videos and facilitated discussion of the simulations were found to increase participants' knowledge and ability to engage in authentic and meaningful POR, we found no significant change in attitude or intent. Recommendations about the simulation content and delivery were provided to inform for future use.ConclusionsThe simulations were found to be a positive and impactful way for collaborative research teams to build knowledge and ability to engage in authentic and meaningful POR. Recommendations for future work include covering different content areas with varying levels of nuance; and offering the training to stakeholders in a variety of roles, such as those higher-ranked academic positions.

Dataset Information

Material practices for meaningful engagement: An analysis of participatory learning and action research techniques for data generation and analysis in a health research partnership.

Publications

Material practices for meaningful engagement: An analysis of participatory learning and action research techniques for data generation and analysis in a health research partnership.

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