Rights statement: 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.
Accepted author manuscript, 727 KB, PDF document
Available under license: CC BY-NC: Creative Commons Attribution-NonCommercial 4.0 International License
Final published version
Research output: Contribution to Journal/Magazine › Journal article › peer-review
Research output: Contribution to Journal/Magazine › Journal article › peer-review
}
TY - JOUR
T1 - The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia
T2 - A qualitative study
AU - Carter, Gillian
AU - McLaughlin, Dorry
AU - Kernohan, W George
AU - Hudson, Peter
AU - Clarke, Mike
AU - Froggatt, Katherine Alison
AU - Passmore, Peter
AU - Brazil, Kevin
N1 - 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.
PY - 2018/7
Y1 - 2018/7
N2 - AimTo 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.BackgroundThe 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.DesignDescriptive qualitative study.MethodsDuring 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.ResultsThree 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.ConclusionThe 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.
AB - AimTo 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.BackgroundThe 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.DesignDescriptive qualitative study.MethodsDuring 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.ResultsThree 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.ConclusionThe 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.
KW - carers
KW - decision-making
KW - dementia
KW - end-of-life-care
KW - nurse education
KW - nursing
KW - nursing home care
U2 - 10.1111/jan.13576
DO - 10.1111/jan.13576
M3 - Journal article
VL - 74
SP - 1595
EP - 1604
JO - Journal of Advanced Nursing
JF - Journal of Advanced Nursing
SN - 0309-2402
ER -