Co-design of an Online Mindfulness Program for Informal Carers of People Living With Dementia: A Qualitative Study of Co-designers’ Experience

Informal carers face significant challenges related to care provision for people living with dementia. Participating in a mindfulness-based stress reduction program could improve the wellbeing of informal carers. However, engaging in these programs can be difficult for informal carers due to the needs of their care recipients. Purpose: This study aimed to co-design an online mindfulness program in collaboration with a range of stakeholders and those with lived experience as carers. Methods: This co-design study adopted an interpretive descriptive qualitative approach to the development of the program. The stakeholders (co-designers) included people with lived experience as informal carers and experts with experience in delivering mindfulness programs. The co-designers reviewed the program content which comprised a range of resources including a booklet, online content and audio recordings of mindfulness activities and provided feedback on the content and delivery methods, via one-to-one interviews. The data were synthesised via inductive content analysis. Findings: Two main categories were formulated: support for participants and program delivery and content. Sub categories for support for participants included, recognition of participants’ roles, promoting self-care and acceptance through mindfulness, accounting for participants’ limitations, developing a virtual social support network and providing support beyond the program. Sub-categories for program delivery and content included tailoring the program to the practical needs of the participants, providing options for program delivery and ensure a culturally safe program. Conclusion: Co-design approaches in collaboration with people with lived experience is essential for the successful adaptation of authentic and appropriate programs which account for carers’ complex care demands and individual challenges. Co-design is an approach that can provide valuable insight about tailoring online programs for end-users to minimise implementation challenges and maximise the potential benefits.