Death, loss and community-Perspectives from children, their parents and older adults on intergenerational community-based arts initiatives in Sweden

Abstract

Studio DöBra is a community-based initiative in which children (9 y/o) and older adults (mostly 80+) engaged with topics related to dying, death and loss through shared arts activities (e.g. collage, sculpture, games). In an ageing society, Sweden's end-of-life (EoL) care is increasingly professionalised and specialised, but there is little community involvement. One goal of Studio DöBra was therefore to support community engagement with EoL-related topics. Another goal was to create opportunities for interaction between children and older adults as there are few intergenerational meeting places. Two iterations of Studio DöBra were developed (2016, 2018) in different Swedish cities, utilising a community-based participatory research approach. Project groups comprised first author MK and representatives of community organisations such as meeting places for older adults, after-school centres and artistic organisations. Each iteration engaged eight children and eight older adults in a series of five workshops. This article investigates how children and older adults motivate their participation, their experiences of participating and ways in which they were affected by participation. We also investigate how parents reflect on their child's participation in Studio DöBra. Older adults, children and their parents were interviewed after each Studio DöBra. An inductive qualitative process guided by interpretive description was used to analyse the transcripts. Findings indicate that participants acted as individuals with agency in connecting across generations and in creating spaces for engaging with EoL-topics, not only in Studio DöBra but also in their social networks. Participants reflected on a changing sense of community through new intergenerational connections and social activities, and expressed a desire to maintain these. However, participants indicated sustainability challenges related to lacking agency in maintaining these spaces and sense of intergenerational community, as they rely on support from community organisations.

Keywords: community-based research; end-of-life care; health promotion; intergenerational relationships; loss and bereavement; neighbourhood-based initiatives.