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Co-designing a Care Plan Guide App to Support Early Conversations About End-of-Life Care in Dementia

2020-10-23Comunicação em conferência Acesso aberto
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datacite.subject.fosCiências Sociais::Outras Ciências Sociais
datacite.subject.fosCiências Sociais::Ciências da Comunicação
datacite.subject.fosCiências Sociais::Economia e Gestão
datacite.subject.sdg03:Saúde de Qualidade
datacite.subject.sdg12:Produção e Consumo Sustentáveis
datacite.subject.sdg13:Ação Climática
dc.contributor.authorNeves, S.
dc.contributor.authorMacdonald, A.
dc.contributor.authorMcLellan, E.
dc.contributor.authorPoole, M.
dc.contributor.authorHarrison-Dening, K.
dc.contributor.authorTucker, S.
dc.contributor.authorBamford, C.
dc.contributor.authorRobinson, L.
dc.date.accessioned2026-04-16T16:09:59Z
dc.date.available2026-04-16T16:09:59Z
dc.date.issued2020-10-23
dc.descriptionLink para o documento: https://radar.gsa.ac.uk/7443/1/Digicom2020_010_v1_accepted.pdf
dc.descriptionEISBN - 9783030616717
dc.description.abstractTalking 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.eng
dc.description.sponsorshipThis article presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research (Grant Reference Number RP-PG-0611-20005). The views expressed in this publication are those of the authors and not necessarily those of the National Health Service, the National Institute for Health Research or the Department of Health. We are very grateful to all participants for their time and enthusiasm.
dc.identifier.citationNeves, 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.
dc.identifier.doi10.1007/978-3-030-61671-7_31
dc.identifier.eissn2661-8192
dc.identifier.isbn9783030616700
dc.identifier.isbn9783030616717
dc.identifier.issn2661-8184
dc.identifier.urihttp://hdl.handle.net/10400.8/16135
dc.language.isoeng
dc.peerreviewedyes
dc.publisherSpringer Nature
dc.relation.hasversionhttps://link.springer.com/chapter/10.1007/978-3-030-61671-7_31
dc.relation.ispartofSpringer Series in Design and Innovation
dc.relation.ispartofAdvances in Design and Digital Communication
dc.rights.uriN/A
dc.subjectco-design research
dc.subjectpatient and families’ engagement
dc.subjectprototyping digital resources
dc.titleCo-designing a Care Plan Guide App to Support Early Conversations About End-of-Life Care in Dementiaeng
dc.typeconference paper
dspace.entity.typePublication
oaire.citation.conferenceDate2020
oaire.citation.endPage12
oaire.citation.startPage1
oaire.citation.titleSpringer Series in Design and Innovation
oaire.versionhttp://purl.org/coar/version/c_970fb48d4fbd8a85
person.familyNameNeves
person.givenNameSandra
person.identifier.ciencia-id5B11-280A-E9BD
person.identifier.orcid0000-0002-1679-6002
relation.isAuthorOfPublicationf7bff82d-59f7-4a4c-bce6-22416111448e
relation.isAuthorOfPublication.latestForDiscoveryf7bff82d-59f7-4a4c-bce6-22416111448e

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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.
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