Optimizing meaningful engagement of older adults with multimorbidity and their caregivers as partners in health care research

Abstract

Background: The importance of engaging older adults (> 65 years) with multimorbidity and their caregivers as partners in health care research has been widely recognized. Inclusion of patients as research partners has resulted in largely positive effects. However, little is known about how best to engage and support them in this role. The objective of this study was to examine how to optimize meaningful engagement of older adults with multimorbidity and their caregivers as research partners. Methods: The research objective was addressed using the persona-scenario method. Study participants were older adults with previous experience as a research partner or a research participant. Participants worked in pairs to create a persona and a scenario about how their persona(s) was involved on the research team. Analysis was conducted in two phases: (a) identification of themes, subthemes, and codes using a qualitative descriptive approach, and (b) interpretation of themes and subthemes into design specifications (actions and products). Results: Four persona-scenario sessions were held with 8 patient participants. Three major themes emerged from the data: (a) recruitment of patient or caregiver research partners (PCRPs); (b) planning for meaningful engagement; and (c) establishing collaborative relationships. These major themes contained 15 corresponding subthemes, and design specifications (52 actions and 37 products). Findings highlight key factors influencing the engagement of older adults with multimorbidity and their caregivers as research partners, such as the need for: early engagement of PCRPs; clarification of PCRPs’ roles and responsibilities; a flexible patient-centred approach to PCRP involvement; identifying and addressing barriers to their engagement (e.g., caregiving support, transportation); training about research; and continued dialogue and feedback to clarify roles and manage expectations. The results are important for identifying ways to promote greater patient engagement in research and ensure that the research reflects the needs of the patients it strives to serve.