The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia:A qualitative study

Carter, Gillian and McLaughlin, Dorry and Kernohan, W George and Hudson, Peter and Clarke, Mike and Froggatt, Katherine Alison and Passmore, Peter and Brazil, Kevin (2018) The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia:A qualitative study. Journal of Advanced Nursing, 74. pp. 1595-1604. ISSN 0309-2402

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Abstract

Aim To explore the experience and the preparedness of family carers in their caregiving role as best interest decision‐makers of a relative living with advanced dementia. Background The prevalence of dementia is a global issue. The role of being a carer of a relative living with dementia does not necessarily lessen once they are admitted to a nursing home. Best interest decision‐making including end‐of‐life care decisions need to be made and reaching these choices can be challenging. The preparedness of family carers in this role needs greater understanding. Design Descriptive qualitative study. Methods During 2015 twenty semi‐structured interviews were conducted of family carers of nursing home residents living with advanced dementia, then analysed using Braun and Clarke's thematic analysis. Results Three themes were identified: (1) Caring for someone living with dementia. The impact on the carer's holistic well‐being and their experience of being a best interest decision‐maker; (2) Accessing support. The influential nature of formal and informal networks; (3) Perceived knowledge and understanding of the dementia trajectory of carers and nursing staff. Conclusion The experiences and preparedness of informal carers is a reflection of their personal response, but the distress experienced highlights the significant need of adequate support availability and of enhancing nursing staffs’ dementia expertise to maximize their role in facilitating best interest decision‐making. This has significant implications for nursing practice and for service user and nursing staff education. Considering the global impact of dementia, our findings have international relevance to similar nursing homes across the world.

Item Type: Journal Article
Journal or Publication Title: Journal of Advanced Nursing
Additional Information: This is the peer reviewed version of the following article: Carter G, McLaughlin D, Kernohan WG, et al. The experiences and preparedness of family carers for best interest decision‐making of a relative living with advanced dementia: A qualitative study. J Adv Nurs. 2018;74:1595–1604. https://doi.org/10.1111/jan.13576 which has been published in final form at http://onlinelibrary.wiley.com/doi/10.1111/jan.13576/abstract This article may be used for non-commercial purposes in accordance With Wiley Terms and Conditions for self-archiving.
Uncontrolled Keywords: /dk/atira/pure/subjectarea/asjc/2900
Subjects:
Departments: Faculty of Health and Medicine > Health Research
ID Code: 126093
Deposited By: ep_importer_pure
Deposited On: 28 Jun 2018 07:46
Refereed?: Yes
Published?: Published
Last Modified: 19 Feb 2020 04:40
URI: https://eprints.lancs.ac.uk/id/eprint/126093

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