Home > Research > Publications & Outputs > The experiences and preparedness of family care...

Electronic data

  • RESUBMISSION_Full_manuscript_ANON_Preparedness_of_family_carers_26_01_18

    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

Links

Text available via DOI:

View graph of relations

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

Research output: Contribution to journalJournal article

Published

Standard

The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia : A qualitative study. / Carter, Gillian; McLaughlin, Dorry; Kernohan, W George; Hudson, Peter; Clarke, Mike; Froggatt, Katherine Alison; Passmore, Peter; Brazil, Kevin.

In: Journal of Advanced Nursing, Vol. 74, 07.2018, p. 1595-1604.

Research output: Contribution to journalJournal article

Harvard

Carter, G, McLaughlin, D, Kernohan, WG, Hudson, P, Clarke, M, Froggatt, KA, Passmore, P & Brazil, K 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, vol. 74, pp. 1595-1604. https://doi.org/10.1111/jan.13576

APA

Carter, G., McLaughlin, D., Kernohan, W. G., Hudson, P., Clarke, M., Froggatt, K. A., Passmore, P., & Brazil, K. (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, 1595-1604. https://doi.org/10.1111/jan.13576

Vancouver

Author

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

Bibtex

@article{41fa63e02fc34743955dcc8a72320138,
title = "The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study",
abstract = "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{\textquoteright} 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.",
keywords = "carers, decision-making, dementia, end-of-life-care, nurse education, nursing, nursing home care",
author = "Gillian Carter and Dorry McLaughlin and Kernohan, {W George} and Peter Hudson and Mike Clarke and Froggatt, {Katherine Alison} and Peter Passmore and Kevin Brazil",
note = "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.",
year = "2018",
month = jul
doi = "10.1111/jan.13576",
language = "English",
volume = "74",
pages = "1595--1604",
journal = "Journal of Advanced Nursing",
issn = "0309-2402",
publisher = "Blackwell Publishing Ltd",

}

RIS

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 -