A Collaborative approach: Care staff and families working together to safeguard the quality of life of residents living with advanced dementia

Sian Hughes; Robert Woods; Katherine Algar-Skaife; Hannah Jelley; Catrin Jones

doi:10.1177/1179573519843872

A Collaborative approach: Care staff and families working together to safeguard the quality of life of residents living with advanced dementia

Sian Hughes, Robert Woods, Katherine Algar-Skaife, Hannah Jelley, Catrin Jones

Allbwn ymchwil: Cyfraniad at gyfnodolyn › Erthygl › adolygiad gan gymheiriaid

232 Wedi eu Llwytho i Lawr (Pure)

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Objectives: This study aimed to explore the quality of life and well-being of care home residents living with advanced dementia, how personalised care can be achieved where the person is completely dependent on others for care and how individuals' choices and human rights were upheld.

Methods: The study design used a qualitative approach, with data collected through in-depth, semi-structured interviews with 8 family members, all of whom visited daily, and 8 care staff.

Results: Emerging themes highlighted the importance of family involvement, signs of well-being, communication and the valued role of direct care staff.

Discussion: Participants were able to identify factors of residents' well-being in residents living with advanced dementia. Family members who visited daily saw themselves working collaboratively with care staff to maintain the quality of life of their relatives and engage in proxy decision making. Regarding human rights, the emphasis was on avoiding abuse, rather than promoting well-being.

Iaith wreiddiol	Saesneg
Tudalennau (o-i)	1-9
Nifer y tudalennau	9
Cyfnodolyn	Journal of Central Nervous System Disease
Cyfrol	11
Dynodwyr Gwrthrych Digidol (DOIs)	https://doi.org/10.1177/1179573519843872
Statws	Cyhoeddwyd - 13 Mai 2019

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10.1177/1179573519843872Trwydded: CC BY-NC

2019 Collaborative approach PVFersiwn derfynol wedi’i chyhoeddi, 206 KBTrwydded: CC BY-NC

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title = "A Collaborative approach: Care staff and families working together to safeguard the quality of life of residents living with advanced dementia",

abstract = "Objectives: This study aimed to explore the quality of life and well-being of care home residents living with advanced dementia, how personalised care can be achieved where the person is completely dependent on others for care and how individuals' choices and human rights were upheld.Methods: The study design used a qualitative approach, with data collected through in-depth, semi-structured interviews with 8 family members, all of whom visited daily, and 8 care staff.Results: Emerging themes highlighted the importance of family involvement, signs of well-being, communication and the valued role of direct care staff.Discussion: Participants were able to identify factors of residents' well-being in residents living with advanced dementia. Family members who visited daily saw themselves working collaboratively with care staff to maintain the quality of life of their relatives and engage in proxy decision making. Regarding human rights, the emphasis was on avoiding abuse, rather than promoting well-being.",

keywords = "advanced dementia, human rights, quality of life, well-being",

author = "Sian Hughes and Robert Woods and Katherine Algar-Skaife and Hannah Jelley and Catrin Jones",

note = "The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Sian Hughes{\textquoteright} PhD studies are funded by a Knowledge Economy Skills Scholarship (KESS 2) from Bangor University in partnership with Fairways Care and the Drapers{\textquoteright} Company. The KESS 2 programme is funded by the European Social Fund. ",

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AU - Hughes, Sian

AU - Woods, Robert

AU - Algar-Skaife, Katherine

AU - Jelley, Hannah

AU - Jones, Catrin

N1 - The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Sian Hughes’ PhD studies are funded by a Knowledge Economy Skills Scholarship (KESS 2) from Bangor University in partnership with Fairways Care and the Drapers’ Company. The KESS 2 programme is funded by the European Social Fund.

PY - 2019/5/13

Y1 - 2019/5/13

N2 - Objectives: This study aimed to explore the quality of life and well-being of care home residents living with advanced dementia, how personalised care can be achieved where the person is completely dependent on others for care and how individuals' choices and human rights were upheld.Methods: The study design used a qualitative approach, with data collected through in-depth, semi-structured interviews with 8 family members, all of whom visited daily, and 8 care staff.Results: Emerging themes highlighted the importance of family involvement, signs of well-being, communication and the valued role of direct care staff.Discussion: Participants were able to identify factors of residents' well-being in residents living with advanced dementia. Family members who visited daily saw themselves working collaboratively with care staff to maintain the quality of life of their relatives and engage in proxy decision making. Regarding human rights, the emphasis was on avoiding abuse, rather than promoting well-being.

AB - Objectives: This study aimed to explore the quality of life and well-being of care home residents living with advanced dementia, how personalised care can be achieved where the person is completely dependent on others for care and how individuals' choices and human rights were upheld.Methods: The study design used a qualitative approach, with data collected through in-depth, semi-structured interviews with 8 family members, all of whom visited daily, and 8 care staff.Results: Emerging themes highlighted the importance of family involvement, signs of well-being, communication and the valued role of direct care staff.Discussion: Participants were able to identify factors of residents' well-being in residents living with advanced dementia. Family members who visited daily saw themselves working collaboratively with care staff to maintain the quality of life of their relatives and engage in proxy decision making. Regarding human rights, the emphasis was on avoiding abuse, rather than promoting well-being.

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A Collaborative approach: Care staff and families working together to safeguard the quality of life of residents living with advanced dementia

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