Experiences of home care workers caring for people living with palliative and end of life care needs at home
Creators: name: Cardwell, Lyndsay
Publisher: name: Lancaster University
Year: 2024

description: 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.