Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations.
This presentation will characterize our experiences integrating stakeholder engagement into a multisite pragmatic clinical trial focused on optimizing care for nursing home residents with dementia. We will discuss our methods for building OT capacity to conduct research that includes the voices of stakeholders.
Primary Author and Speaker: Jenny Martinez
Additional Authors and Speakers: Catherine Piersol
Contributing Authors: Lauren Terhorst, Sherrie Holloway, Felicia Chew, and Natalie Elizabeth Leland
PURPOSE AND RATIONALE: Caregivers, residents, payors, and other stakeholders have prioritized the use of non-pharmacological approaches to optimize care delivery for nursing home residents with dementia. Despite a strong evidence-base, systematic translation and implementation into clinical practice is limited. Thus, as efforts are made to evaluate the system level implementation of effective interventions, stakeholder engagement (SE) is essential.1 SE optimizes impact, relevance, and implementability.2 Moreover, it ensures the voice of the enduser and care receiver are represented throughout the research process. Although SE has received increased attention, there is little guidance on its implementation, particularly in nursing homes research. In response, we characterize our experiences with SE into a multi-site pragmatic clinical trial focused on optimizing nursing home care for residents with dementia.
DESIGN: Qualitative
METHODS: We collected data on SE in our research study, including (a) descriptive surveys completed by advisory committee members; (b) activity via an online platform (www.basecamp.com); and (c) meeting minutes. In accordance with Concannon's framework for reporting SE,3 data was analyzed for descriptions of when and how SE occurred, and its impact on our research.
ANALYSIS AND RESULTS: Through data triangulation, our analysis revealed SE occurred through consistent and informative electronic updates promoting feedback and comment. Of note is an in-person kickoff meeting with our diverse advisory committee members (e.g., patient advocate, caregiver, practitioner, health system leadership, etc.), which established our approach to SE and promoted stakeholder-researcher-funder camaraderie. Subsequently the research team employed various methods to communicate with stakeholders including synchronous (e.g., monthly videoconferences) and asynchronous methods (e.g., online discussions, engaging individuals based on expertise, email, collaboration on dissemination). Through consistent, multi-modal engagement, stakeholders contributed to decision-making, including: (1) a credible strategy for recruiting nursing home residents with dementia and their caregivers; (2) design and content of study recruitment and intervention materials; (3) a realistic plan for collecting and accessing resident data; (4) development of a caregiver interview and quantitative survey; and (5) manuscripts and presentations that represent stakeholder voices.
CONCLUSION: Our preliminary findings demonstrate the value of SE in research and that building a sustainable, active community in occupational therapy-led dementia care research is feasible. Studies can be enhanced by early and consistent SE and a project infrastructure that prioritizes partnership with stakeholders.
IMPACT STATEMENT AND RELATION TO RESEARCH PRIORITIES: Executing stakeholder-driven and prioritized occupational therapy research is essential for meeting the needs of nursing home residents with dementia and their caregivers. Given occupational therapy's focus on client-centered research and practice, conducting SE research is one way to enhance the professions' distinct value, build capacity for rehabilitation-specific SE, and produce easily-actionable results that reduce the research-practice gap.1,2
References
1. Grimshaw, J. M., Eccles, M. P., Lavis, J. N., Hill, S. J., & Squires, J. E. (2012). Knowledge translation of research findings. Implementation Science: IS, 7, 50-50. https://doi.org/10.1186/1748-5908-7-50
2. Frank, L., Basch, E., & Selby, J. V. (2014). The PCORI perspective on patient-centered outcomes research. Journal of the American Medical Association, 312(15), 1513-1514.
3. Concannon, T.W., Fuster, M., Saunders, T., Patel, K., Wong, J.B., Keslie, L.K., & Lau, J. (2014) A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research. Journal of General Internal Medicine, 29(12), 1692-1701.
