Multiple stakeholders' perspectives on respite service access for people with dementia and their carers

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Date
2019-07-12
Authors
O'Shea, Emma
Timmons, Suzanne
O'Shea, Eamon
Irving, Kate
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Oxford University Press on behalf of the Gerontological Society of America
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Abstract
Background and Objectives: People with dementia and carers do not always access respite services in a timely manner, or in some cases, at all. Although carers’ perspectives on respite access have been explored, other stakeholder perspectives, especially providers and people with dementia, are underrepresented in the existing literature. The aim of this study was to synthesize multiple stakeholders’ perspectives, including people with dementia, on accessing respite services in the context of dementia. Research Design and Methods: Purposive maximum variation sampling was used. Semi-structured interviews were conducted with 35 key stakeholders, including people with dementia (n = 6), carers (n = 9), respite frontline staff (n = 4), respite managers (n = 8), primary care professionals (n = 3), and policy-makers/academics (n = 5). The process of consent is outlined. Data were interpreted inductively using thematic analysis. Reflexivity was considered throughout the research process. Results: Three themes (“Service Acceptability,” “Navigational Knowledge and Skills,” “Constructing and Adjudicating Respite Need”) were identified that relate to how access to respite services is negotiated between service providers and dyads. Discussion and Implications: A number of the findings support previous research; however, novel findings discussed relating to the access negotiation process include (a) the ambiguous legitimacy of respite needs, in a system configured to deliver a biomedical model of care and which considers nonmedical care as a family responsibility, and (b) the constraining effects of disparate conceptualizations of “respite” between carers and providers. Future research should interrogate the appropriate boundaries of public responsibility in relation to respite service planning/delivery for dementia, with particular reference to client preferences for community and in-home provision.
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Keywords
Informal , Adult day care , Access to and utilization of services , Caregiving
Citation
O'Shea, E., Timmons, S., O'Shea, E. and Irving, K. (2019) 'Multiple stakeholders' perspectives on respite service access for people with dementia and their carers', The Gerontologist, 59(5), pp. e490-e500. doi: 10.1093/geront/gnz095
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© 2019, the Authors. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. This is a pre-copyedited, author-produced PDF of an article accepted for publication in The Gerontologist following peer review. The version of record, O'Shea, E., Timmons, S., O'Shea, E. and Irving, K. (2019) 'Multiple stakeholders' perspectives on respite service access for people with dementia and their carers', Gerontologist, 59(5), pp. e490-e500, doi: 10.1093/geront/gnz095 is available online at: https://doi.org/10.1093/geront/gnz095