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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Developing and using a structured, conversation-based intervention for clarifying values and preferences for
Carol Tishelman1,2,3,4, Malin Eneslätt1,5, Elizabeth Menkin6
1Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
Abstract:
Sweden has no systematic advance care planning (ACP), nor legal recognition of end-of-life proxies. We describe our experiences and reflections from a participatory action research process, aiming at developing and initially using a conversation-based, structured ACP approach among community-dwelling, older adults in Sweden. Eco-mapping and DöBra cards were used with 65 people to catalyze discussions on preferences for the end-of-life. We found great individual variation in both Eco-map depictions of social networks and prioritization of the 37 DöBra card items. The DöBra cards were concluded to be a viable tool for stimulating person-centered conversations on preferences for future end-of-life care.
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