Co-production in practice: A qualitative study of the development of advance care planning workshops for South Asian elders

Abstract

Background: Advance care planning can improve patient and family outcomes; however, minoritised ethnic communities experience access barriers. Co-production offers a way to design culturally appropriate information and support, but evidence is needed to understand its implementation in palliative care. Aim: To explore and describe how two charities used co-production to develop and deliver community-based advance care planning workshops for South Asian elders. Design: Workshops were co-produced by two charities. In parallel, a multi-component qualitative study was conducted comprising workshop observations, semi-structured interviews with charity staff and focus groups with workshop participants, facilitated by community co-researchers in English, Hindi, Urdu and Punjabi. Data were analysed using thematic analysis. Setting/participants: Four workshops were held in a London (UK) community setting (each with 5–30 participants); four interviews were conducted with charity staff members, and three focus groups with 16 workshop participants. Results: We describe three main themes: Co-production in action: organic origins and trusted foundations; Co-production processes embedded in equal partnership; and Impact of the workshops. Fundamental to co-production processes was the community-led approach of the local charity, the trust of the local South Asian community and the relationship between the charities, including transparent communication and mutual respect. The workshops were reported to be useful and enjoyable, engendering a sense of agency and connection and helped disseminate awareness and knowledge through the community, benefitting the wider system. Conclusions: Co-production can help widen access to advance care planning. Findings offer an in-depth example of co-production-in-action to inform intervention development and research.