Innovative research in care practice for older people can benefit from the active involvement of patient and family partners. Involvement may begin with identifying priorities, then move to formulate research questions and to plan the research methods, to data collection, and finally to analysis and knowledge dissemination. However, in the field of dementia care, actively engaging patients and families in co-research is a novel practice that needs exploration. This paper describes the experiences and perspectives of two patient researchers and three family researchers, along with four clinicians (two physicians, a nurse, and an occupational therapist) within a social robot project in dementia care. Meeting notes, team reflection focus groups, follow–up interviews, and a research journal were used to document the research process. The results are presented in three themes: (a) identify challenges and lessons learned, (b) co-inquire enriched learning, (c) co-produce knowledge for care improvement. All team members agreed that an inclusive environment was important to facilitate meaningful partnerships for undertaking research together. Trust and respect were seen as vital for a rewarding and productive experience in the co-inquiry journey. Some of the challenges to sustaining participant engagement were competing priorities and a risk of tokenism. This article provides a rich description as well as practical details of the research experiences among team members. We offer examples of lessons learned and practical tips to help others increase the engagement of patients and families in research.
This article is associated with the Innovation & Technology lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework)
Hung, Lillian; Berndt, Annette; Wallsworth, Christine; Horne, Neil; Gregorio, Mario; Mann, Jim; Liu, Cindy; Woldum, Evan; Au-Yeung, Andy; and Chaudhury, Habib
"Involving patients and families in a social robot study,"
Patient Experience Journal: Vol. 6
, Article 12.
Available at: https://pxjournal.org/journal/vol6/iss2/12