Identifying unmet needs of informal dementia caregivers in clinical practice: User-centered development of a digital assessment tool

Abstract

Background: Despite the increasing interventions to support family caregivers of people with dementia, service planning and delivery is still not effective. Objective: Our study aimed to develop a digitally-supported needs assessment tool for family caregivers of people with dementia that is feasible, time-efficient, understood by users, and can be self-completed in the primary care setting. Methods: The development of the unmet needs assessment tool was part of a cluster-randomized controlled trial examining the effectiveness of a digitally supported care management programme to reduce unmet needs of family caregivers of people with dementia (GAIN [Gesund Angehörige Pflegen]) and was conducted in 3 phases. Using an iterative participatory approach with informal caregivers, health care professionals including general practitioners, neurologists, psychologists, psychiatrists, nurses, and Alzheimer Society representatives, we developed a digital self-completion unmet needs assessment tool focusing on informal caregivers' biopsychosocial health und quality of life in connection to their caregiver responsibilities. Data were collected through group discussions, written feedback, protocols, think-aloud protocols, and interviews, and analyzed thematically. Results: Data from 27 caregivers, including caregivers of people with dementia (n=18), health care professionals (n=7), and Alzheimer Society representatives (n=2) were collected. Thematic analysis identified 2 main themes: content of the assessment tool and usability and handling of the digital tablet-based assessment tool. The feedback provided by the stakeholders led to new aspects and changes to make the tool comprehensive, easy to read, and easy to handle. The overall mean completion time was reduced from the initial 37 minutes to 18 minutes, which renders the assessment tool fit to be self-completed in waiting rooms of primary care practices or other settings. Conclusions: The input of the 3 stakeholder groups has supported the development of the assessment tool ensuring that all aspects considered important were covered and understood and the completion of the assessment procedure was time-efficient and practically feasible. Further validation of the assessment tool will be performed with the data generated as part of the GAIN trial.