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Co-designing a Care Plan Guide App to Support Early Conversations About End-of-Life Care in Dementia
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| Talking about death and end-of-life care (EoLC) can be a sensitive topic for people affected by dementia and their families. However, recent research [1] has identified the need for people living with dementia (PLwD) to start planning timely discussions about their future care to help their family and professional carers to confidently make decisions on their behalf when they are no longer able to do so themselves [2]. This paper describes a five-stage iterative co-design approach aimed at understanding the type and nature of these sensitive discussions and developing a resource to support PLwD, their families and carers. The resource took the form of a Care Plan Guide app, as a tool to help initiate early discussions about anticipatory care planning [3] in dementia for PLwD to ensure good personalized care and that important wishes were honoured. The paper highlights the importance of the involvement and active collaboration of families living with the illness. It discusses lessons learned, reflections and recommendations for approaching co-designing healthcare digital resources for sensitive EoLC issues that may have wider applications than for PLwD. | 2.72 MB | Adobe PDF |
Orientador(es)
Resumo(s)
Talking about death and end-of-life care (EoLC) can be a sensitive topic for people affected by dementia and their families. However, recent research [1] has identified the need for people living with dementia (PLwD) to start planning timely discussions about their future care to help their family and professional carers to confidently make decisions on their behalf when they are no longer able to do so themselves [2]. This paper describes a five-stage iterative co-design approach aimed at understanding the type and nature of these sensitive discussions and developing a resource to support PLwD, their families and carers. The resource took the form of a Care Plan Guide app, as a tool to help initiate early discussions about anticipatory care planning [3] in dementia for PLwD to ensure good personalized care and that important wishes were honoured. The paper highlights the importance of the involvement and active collaboration of families living with the illness. It discusses lessons learned, reflections and recommendations for approaching co-designing healthcare digital resources for sensitive EoLC issues that may have wider applications than for PLwD.
Descrição
Link para o documento: https://radar.gsa.ac.uk/7443/1/Digicom2020_010_v1_accepted.pdf
EISBN - 9783030616717
EISBN - 9783030616717
Palavras-chave
co-design research patient and families’ engagement prototyping digital resources
Contexto Educativo
Citação
Neves, S. et al. (2021). Co-designing a Care Plan Guide App to Support Early Conversations About End-of-Life Care in Dementia. In: Martins, N., Brandão, D. (eds) Advances in Design and Digital Communication . Digicom 2020. Springer Series in Design and Innovation , vol 12. Springer, Cham. https://doi.org/10.1007/978-3-030-61671-7_31.
Editora
Springer Nature
Licença CC
Sem licença CC