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Sharaf, Ahmed Khamis (2023) Experiences of family carers of people with cancer receiving home-based end-of-life care services. PhD thesis, University of Nottingham.

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Abstract

Aim: To explore family carers experiences and perceptions about formal support services received while caring for people with cancer at home during the last year of life.

Background: Cancer is a major leading cause of death globally. Family carers of people with cancer experience significant challenges during their caregiving journey that are intensified towards the end of life. Supporting family carers of people with cancer is required for promoting their well-being and enhancing their caregiving coping, which implicitly influences the quality of caregiving provided at home for people with cancer. Although several studies have explored caregiving phenomena, many of them approached formal support in a descriptive way. However, an interpretive experience of formal support seemed to be limited, especially for the end-of-life period. Different support services are offered to facilitate family carers’ coping such as practical support, respite care, and emotional support; however, family carers reported varying experiences and satisfaction. Further research is needed to explore the contextual and experiential variations for either satisfaction or dissatisfaction with formal support and their role in empowering family carers while considering the impacts of the end-of-life trajectory on caregiving dynamics and experiences.

Study Context: This study was undertaken in the UK community healthcare setting.

Methodology: Constructivist grounded theory approach was used. In-depth, semi-structured interviews were conducted with 26 family carers of people with cancer. Constructivist grounded theory traditions guided data collection and analysis.

Findings: Three major categories were identified: living in the chaos of caregiving; interacting with formal support; feeling rewarded versus guilt and regret. These theoretical categories contributed to the development of a substantive theory of facing the caregiving chaos in the light of formal support, which described the essence of family carers’ experiences.

Conclusion: Family carers experienced different sources of chaos while caring for people with cancer at the end of life. However, their ways of coping and formal support interactions interplayed in this context, which yielded a collective experience of reward or guilt and regret. These findings provided new insight regarding the role of formal support in the facilitation of long-lasting, rewarding experiences. The present study provides several implications to enhance family carers’ support, such as enhancing work support policies and providing family-centred care. Future research is needed to explore the relevance of the proposed theory for family carers in other patient populations and in other caregiving contexts.

Item Type:	Thesis (University of Nottingham only) (PhD)
Supervisors:	Diver, Claire Whittingham, Katharine Clissett, Philip
Keywords:	Carers; Terminal illness; Formal support interactions
Subjects:	W Medicine and related subjects (NLM Classification) > WB Practice of medicine
Faculties/Schools:	UK Campuses > Faculty of Medicine and Health Sciences > School of Health Sciences
Item ID:	76664
Depositing User:	Sharaf, Ahmed
Date Deposited:	13 Dec 2023 04:40
Last Modified:	13 Dec 2023 04:40
URI:	https://eprints.nottingham.ac.uk/id/eprint/76664

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