Experiences of home care workers caring for people living with palliative and end of life care needs at home

Cardwell, Lyndsay and Preston, Nancy and Simpson, Jane and Hughes, Sean (2024) Experiences of home care workers caring for people living with palliative and end of life care needs at home. PhD thesis, Lancaster University.

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Abstract

Background Home care workers are often required to provide physical and emotional support to people living with palliative and end of life care needs at home. Despite home care workers playing a vital role in ensuring people can remain at home to die, if this is their preference, not enough is known about the experience of this workforce from their own perspective. Many developed countries rely on home care workers to deliver end of life care in the community but these roles continue to offer poor financial benefits with variable access to training and support. This hermeneutic literature review and interpretative phenomenological analysis (IPA) study explored home care workers’ lived experiences of caring for people approaching the end of life. Aim The aim of this hermeneutic literature review and IPA study was to examine the lived experience of home care workers who are delivering care to people with palliative and end of life care needs in the community. Methods A literature review was conducted using a hermeneutic framework to explore the experience of home care workers caring for people with palliative and end of life care needs in their own home. The findings of this review informed the qualitative IPA study. IPA methodology, which is informed by phenomenology, hermeneutics and idiography, was selected as it enabled in-depth analysis of transcripts. Eight home care workers from community care providers in Scotland were recruited and interviewed. All home care workers had cared for people approaching the end of life at home over the previous twelve-month period. Results Four master themes arose from the IPA analysis. (1) “You are really on your own”: Coping with isolation when providing care in the community. (2) “You just treat them, you know, like they're still alive”: The value of ritual for home care workers when caring for the dying and the dead. (3) “I wait and cry most times in the car”: Understanding the impact of grief and bereavement for those delivering care. (4) “These are the rules, no matter how frustrating you just have to follow”: Frustrations with organisational influence and control within community care settings. The notion of being unseen or invisible was reflected across participant accounts and can be found in all four master themes. Conclusion IPA allowed an in-depth exploration of home care workers’ lived experiences of caring for people with end of life care needs. Home care workers were geographically, professionally, and emotionally isolated but remained overwhelmingly positive around their perception of being privileged to care for people at the end of life. Their experience of grief and bereavement was seen as an expected part of their role. Conservation of resource theory enabled home care workers occupational stress and risk of burnout to be further explored. The results of the study add to existing evidence that clarity on organisational support and access to education focused on palliative and end of life care would be meaningful for this workforce.