Title

Experiences of caregivers around the final decision-making process of transferring an older person living with dementia to long-term care: A grounded theory study

Author Identifiers

Joyce Muge

https://orcid.org/0000-0003-3598-6271

Date of Award

2022

Degree Type

Thesis - ECU Access Only

Degree Name

Doctor of Philosophy

School

School of Nursing and Midwifery

First Advisor

Caroline Vafeas

Second Advisor

Lisa Whitehead

Abstract

The decision to transfer an older person living with dementia to long-term residential care is challenging for family caregivers. The experiences of family caregivers leading up to the transfer have been previously explored; however, no study has explicitly focused on family experiences related to making the final decision to transfer. This study presents a constructivist grounded theory of the experiences of 12 family caregivers of older adults living with dementia. Caregivers of these older people were recruited through a residential aged care facility in the metropolitan area, Western Australia. Data collection was conducted using face to face interviews with the participants and guided by the interview questions. Data collection and analysis followed the steps and fundamentals of a grounded theory approach which included concurrent data collection and analysis, constant comparison and memo-writing. Data was analysed using Charmaz’s coding technique to include initial coding, focused coding and theoretical coding (Charmaz, 2006).

This thesis presents a substantive constructivist theory of: “The journey of uncertainty punctuated by key moments.” The journey of uncertainty in the context of this study includes the unpredictable experiences of family caregivers before, during and post transfer of an older person living with dementia to long-term residential care. The key moments were the major changes that older people living with dementia, or the family caregiver, experienced. Four core categories exemplified the journey of uncertainty: “cascade of events triggering the final decision.” which illuminated the burden of care to family caregivers, the gradual deterioration and the unpredictable acute care needs of the older person living with dementia. “Responsibility for decision-making and living with the decision” captured the experiences of family caregiver on decision-making to transfer and life post decision. The complex transfer process to residential aged care was perceived as “Navigating the maze of the complex transfer process” punctuated by bureaucracy and lack of knowledge and support. “Life after transfer to long-term residential care” depicted continuity of the journey with ongoing uncertainties among family caregivers about the need to partner and build relationships with long-term residential staff and the support they needed post transfer. The substantive grounded theory suggests that there is need to increase support provided to family caregivers. The study highlights implications for professional practice, future policy and residential aged care providers and identifies areas for further research.

Comments

Author also known as Joyce Muge

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