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Title: Advance care planning for people with dementia in long term care settings : an explanatory mixed methods study of health care professionals' and families' perspectives
Author: Beck, Esther-Ruth
ISNI:       0000 0004 6348 5586
Awarding Body: Ulster University
Current Institution: Ulster University
Date of Award: 2017
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Advance care planning is advocated for people with dementia, yet discussions with this group are rare, particularly in long-term care settings. The role of health care professionals & family are pivotal, therefore further understanding of their perspective is needed. Aim: To examine the understanding and experience of family caregivers of people with dementia, general practitioners and registered nursing home staff, regarding the process of advance care planning, underpinned by the Theory of Planned Behaviour. Methods: A sequential explanatory mixed methods design incorporating three phases was adopted. • A cross-sectional survey to nursing home managers (n=116). • Interviews and focus groups with key health care professionals (n=49). • Interviews with family caregivers (n=16). Quantitative data was analysed using SPSS, whilst qualitative data was analysed using thematic analysis, utilising Miles and Huberman’s framework. Results: All three groups had poor knowledge of the process of advance care planning, particularly the legal aspects. Whilst health care professionals and families considered there were benefits, there were challenges to implementation in this setting. These included: concerns regarding the ability of the person with dementia to engage, the increased role of the family, a lack of context specific guidance, and a knowledge deficit regarding dementia and advance care planning. There was widespread variations in perspectives, including when it should be implemented, who should be responsible and what it should focus on. The GP played a key role, whilst nursing staff remained on the periphery. Families were central in the decision making process, yet their ability was influenced by a limited awareness of dementia, decisional burden due to guilt and anticipatory grief, and a limited ability to reflect the wishes of the person with dementia. Conclusions: Advance care planning for people with dementia is a complex process within nursing homes, influenced by multiple factors related to the setting, the perspectives of those involved and the context of dementia itself.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available