Participatory methods in designing digital health interventions for informal caregivers of people with dementia. A systematic review

Aims: The growing use of technology in healthcare has contributed to the development of digital interventions for informal caregivers of people living with dementia. However, the marked heterogeneity of interventions poses challenges in evaluating their effectiveness. We conducted a review to delineate the distinctive features and development of the interventions, with focus on participatory methods. Methods: We searched the following databases: Cochrane; Cinahl; Pubmed; Psychinfo; Scopus; Web of Knowledge, and IEEE, and screened and selected studies based on titles, abstracts and full texts. We used standardized procedure to abstract and synthetize relevant data of primary studies, and the Mixed Methods Appraisal Tool to assess their quality. Results: Of 3136 records, 20 studies met the inclusion criteria. Most of the studies were web-based interventions, with multiple components and interactive features. The design and development of eight interventions employed participatory methods with large variations in the underlying framework and application. Conclusions: This review sheds light on the design and development of digital interventions for dementia caregivers. The limited and heterogeneous use of participatory methods, along with inadequate reporting, hinders a clear understanding of intervention efficacy and implementation. Formal standardization of participatory action research methods is necessary to improve the design, development, and evaluation of digital interventions for caregivers of people with dementia.