An interpretative phenomenological analysis of the experiences of spouses of people with young onset dementia of transition from hospital to a care home

Mada, Francisca 2024. An interpretative phenomenological analysis of the experiences of spouses of people with young onset dementia of transition from hospital to a care home. CARDIFF UNIVERSITY. Item availability restricted.

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Abstract

Introduction: It is known that people in the United Kingdom with young onset dementia (YOD) go through hospital admissions and are discharged to care homes and that their families support them through these transitions. This thesis explored the lived experiences of the wives and husbands of people with young onset dementia (YOD) of their partners’ transition from hospital to a care home. Methods: The study uses Interpretive Phenomenological Analysis (IPA). A purposive sample of five participants in the United Kingdom, three wives and two husbands of people living with YOD was recruited. Four people with YOD had experienced psychiatric hospital admissions and one had experienced a psychiatric ward in an acute hospital setting. Data were collected using semi-structured in-depth interviews. Participants’ experiences were sought and analysed using IPA’s layered approach to the data to make sense of the participants’ making sense of their world (Smith et al. 2022). Meleis’ Transition Framework (MTF) (Meleis et al. 2000) was used to conceptualise the transition on the YOD trajectory. Results: Transition from a hospital to a care home is a stressful time for families who are being impacted on by YOD and are trying to support the person with YOD as effectively as they can and deal with the difficulties they encounter along the way. The four convergent group experiential themes (GETs) identified are “The burdens of caring”, “Dementia grief”, “The system itself is not clear” and “The impact of YOD on dependent children”. The two divergent PETs are “Do it yourself dementia (DIY dementia” and “Receiving assistance”. Participants felt the health and social care system is unclear, does not have awareness or knowledge of YOD and the needs of those affected, processes are complex for families to understand, and focus is solely on the person with YOD. They described wanting professionals to be proactive in providing support and information, talk about YOD and form therapeutic relationships with families and especially consider the young children who might be involved. Conclusions: The process of transition from a hospital to a care home for people with YOD and their families is complex and multifaceted. The narratives clearly show that both the person with YOD and family’s needs cannot be separated. There is need for a knowledgeable and competent health and social care workforce. YOD is a specialist area that needs a workforce that is specialised in that specific area. iii Families go through several critical points and need professionals to understand this to be effective in their work. This study emphasises the recognition of young children of those with YOD and the need to provide age-appropriate support which was lacking for the children in this study

Item Type:	Thesis (Other)
Date Type:	Completion
Status:	Unpublished
Schools:	Healthcare Sciences
Date of First Compliant Deposit:	10 October 2024
Last Modified:	10 Oct 2024 13:43
URI:	https://orca.cardiff.ac.uk/id/eprint/172826

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