A stakeholder engagement strategy for an ongoing research program in rural dementia care: Stakeholder and researcher perspectives.

Participatory research approaches have developed in response to the growing emphasis on translation of research evidence into practice. However, there are few published examples of stakeholder engagement strategies, and little guidance specific to larger ongoing research programs or those with a rural focus. This paper describes the evolution, structure, and processes of an annual Rural Dementia Summit launched in 2008 as an engagement strategy for the Rural Dementia Action Research (RaDAR) program and ongoing for more than 10 years; and reports findings from a parallel mixed-methods study that includes stakeholder and researcher perspectives on the Summit's value and impact. Twelve years of stakeholder evaluations were analyzed. Rating scale data were summarized with descriptive statistics; open-ended questions were analyzed using an inductive thematic analysis. A thematic analysis was also used to analyze interviews with RaDAR researchers. Rating scale data showed high stakeholder satisfaction with all aspects of the Summit. Five themes were identified in the qualitative data: hearing diverse perspectives, building connections, collaborating for change, developing research and practice capacity, and leaving recharged. Five themes were identified in the researcher data: impact on development as a researcher, understanding stakeholder needs, informing research design, deepening commitment to rural dementia research, and building a culture of engagement. These findings reflect the key principles and impacts of stakeholder engagement reported in the literature. Additional findings include the value stakeholders place on connecting with stakeholders from diverse backgrounds, how the Summit was revitalizing, and how it developed stakeholder capacity to support change in their communities. Findings indicate that the Summit has developed into a community of practice where people with a common interest come together to learn and collaborate to improve rural dementia care. The Summit's success and sustainability are linked to RaDAR's responsiveness to stakeholder needs, the trust that has been established, and the value that stakeholders and researchers find in their participation.

Evolution of a community-based participatory approach in a rural and remote dementia care research program.

BACKGROUND: Community-based participatory research (CBPR) approaches are valuable strategies for addressing complex health and social problems and powerful tools to support effective transformation of social and health policy to better meet the needs of diverse stakeholders. OBJECTIVES: Since 1997, our team has utilized CBPR approaches to improve health service delivery for persons with dementia and their caregivers in rural and remote settings. We describe the evolution of our approach, including benefits, challenges, and lessons learned over the last 15 years. METHODS: A multistage approach initiated an ongoing CBPR research program in rural dementia care and shaped its direction based on stakeholders' recommendation to prioritize both community and facility-based care. Strategies to develop and foster collaborative partnerships have included travel to rural and remote regions, province-wide community meetings, stakeholder workshops, creation of a Decision-Maker Advisory Council to provide ongoing direction to the overall program, development of diverse project-specific advisory groups, and a highly successful and much anticipated annual knowledge exchange and team-building event. LESSONS LEARNED: Partnering with stakeholders in the full research process has enhanced the research quality, relevance, application, and sustainability. These benefits have supported the team's evolution from a relatively traditional focus to an integrated approach guiding all aspects of our research. CONCLUSIONS: Developing and sustaining the full range of stakeholder and decision-maker partnerships is resource-and time-intensive, but our experience shows that community-based participatory strategies are highly suited to health services research that is designed to support sustainable service delivery improvements.