Development of an app‐based life story intervention: Lessons learned from including persons living with dementia in focus group research

Abstract

AbstractBackgroundA small‐scale focus group study was conducted utilizing persons living with dementia (PLWD) to inform the development of an app‐based life story review intervention.MethodTwo (Time 1 and Time 2) 60‐minute virtual (Zoom) focus groups were conducted 9 months apart with persons living with dementia (n = 5) and facilitated by research staff. In Time 1, participants were sent in advance a series of LifeBio MemoryTM tablet‐app prototypes and asked to provide specific feedback on the following: 1) ease of use, 2) clarity of instructions, 3) feasibility to use the product, and 4) potential impact on person‐centered care practices. Time 2 presented the complete app to participants for similar feedback. To maximize successful participation, participants received one‐on‐one support by research staff prior to focus groups. Assistance was provided with using Zoom and navigating the tablet and LifeBio MemoryTM prototype and app. Dementia‐friendly materials were created for participants. Research staff conducted a thematic analysis of all transcripts. Time 1 findings were utilized to inform product development based on PLWD‐specific feedback; Time 2 findings were utilized for product refinement.ResultAlthough the PLWD sample was small, promising acceptability and feasibility findings were reported. All 5 PLWD participated in Time 1 and Time 2 focus groups. Themes from Time 1 (prototype) findings included: 1) Comfort using app‐based product technology, 2) Value of sharing their life story, 3) Training issues, 4) Implementation concerns, and 5) Concerns with how PLWD are perceived. PLWD feedback, was integrated in the development of the product. Analysis of Time 2 determined: 1) Some remaining training concerns, 2) High levels of satisfaction, and 3) Buy‐in that a product like LifeBio MemoryTM can impact person‐centered care. Themes, recommendations, and action steps were proposed and changes were made in content and functionality, in preparation for an upcoming feasibility study to test the LifeBio MemoryTM app with PLWDs living in residential care (n = 242).ConclusionBy building in supports, persons living with dementia are able to successfully participate as members of a research team, providing valuable feedback as stakeholders in product development research; further, virtual delivery of focus groups is also possible.