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Caring at home for a family member with a terminal illness: a qualitative study of relatives’ experiences

Totman, JW; (2013) Caring at home for a family member with a terminal illness: a qualitative study of relatives’ experiences. Doctoral thesis , UCL (University College London). Green open access

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Abstract

Caring for a family member at the end of their life can be highly demanding, and those in this role are at increased risk of poor physical and mental health. Policy guidelines indicate that palliative care services have a key role to play in supporting family caregivers. This thesis explores the emotional challenges faced by relatives caring for a dying family member, and the ways in which healthcare professionals can support them. Part 1 is a literature review of psychological interventions for caregivers of terminally ill patients. A total of 23 studies were identified for inclusion, and interventions were classified into four types: problem-solving, psycho-educational/supportive, behavioural and bereavement/meaning-based. The majority of the studies reported positive outcomes, but the strength of their designs varied. Overall, the studies provide encouraging evidence for the benefits of psychological interventions in improving some aspects of caregivers’ wellbeing. Part 2 is a qualitative study exploring the emotional challenges faced by home caregivers. Semi-structured interviews were conducted with 15 recently bereaved relatives who had cared at home for a family member with cancer. Transcripts were analysed thematically using the Framework approach and themes were organised under four categories based on Yalom’s (1980) existentialist theoretical framework: responsibility, isolation, death and meaningfulness. Part 3 is a reflective discussion of the process of carrying out the empirical study and the literature review. The limitations of both projects are considered, as well as some of the broader conceptual, methodological, clinical and contextual issues arising from them.

Type: Thesis (Doctoral)
Title: Caring at home for a family member with a terminal illness: a qualitative study of relatives’ experiences
Open access status: An open access version is available from UCL Discovery
Language: English
UCL classification: UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences
URI: https://discovery.ucl.ac.uk/id/eprint/1406298
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