Culturally Adapting the World Health Organization Digital Intervention for Family Caregivers of People With Dementia (iSupport): Community-Based Participatory Approach

Abstract

Background: Informal caregivers of people with dementia are at high risk of developing mental and physical distress because of the intensity of the care provided. iSupport is an evidence-based digital program developed by the World Health Organization to provide education and support for the informal everyday care of people living with dementia.

Objective: Our study aims to describe in detail the cultural adaptation process of iSupport in Switzerland. We specifically focused on the participatory strategies we used to design a culturally adapted, Swiss version of iSupport that informed the development of the desktop version, mobile app, and printed manual.

Methods: We used a mixed methods design, with a community-based participatory approach. The adaptation of iSupport followed the World Health Organization adaptation guidelines and was developed in 4 phases: content translation, linguistic and cultural revision by the members of the community advisory board, validation with formal and informal caregivers, and refinement and final adaptation.

Results: The findings from each phase showed and consolidated the adjustments needed for a culturally adapted, Swiss version of iSupport. We collected feedback and implemented changes related to the following areas: language register and expressions (eg, from "lesson" to "chapter" and from "suffering from" dementia to "affected by" dementia), resources (hyperlinks to local resources for dementia), contents (eg, from general nonfamiliar scenarios to local and verisimilar examples), graphics (eg, from generalized illustrations of objects to human illustrations), and extra features (eg, a glossary, a forum session, and a read-aloud option, as well as a navigation survey).

Conclusions: Our study provides evidence on how to culturally adapt a digital program for informal caregivers of people living with dementia. Our results suggest that adopting a community-based participatory approach and collecting lived experiences from the final users and stakeholders is crucial to meet local needs and to inform the further development, testing, and implementation of digital interventions in a specific cultural context.

Keywords: caregiver; community; community-based participatory research; dementia; development; digital interventions; iSupport; informal caregivers; mHealth; mental distress; physical distress; support.

Figure 1

iSupport index.

Figure 2

Flowchart of the adaptation process of iSupport in Switzerland. CAB: community advisory board; WHO: World Health Organization.