JMIR Publications

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 online program developed by the World Health Organization (WHO) to provide education and support to informal everyday care.

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 iSupport Swiss version that informed the development of the desktop version, mobile application, and printed manual.

Methods:

We used a mixed-methods design, with a community based participatory research approach. The adaptation of iSupport followed the WHO adaptation guidelines and was developed into five 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:

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 (e.g., from “lesson” to “chapter”; from “suffering from” dementia to “affected by” dementia); resources (hyperlinks to local resources for dementia); contents (e.g., from general, non-familiar scenarios to local and verisimilar examples); graphics (e.g. from generalized objects’ illustrations to featured humans’ illustrations), and extra features (e.g., glossary, interactive forum, read-aloud option; navigation survey).

Conclusions:

Our study provides evidence on how to culturally adapt an online 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 online interventions to a specific cultural context.