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Family Carers’ Experiences of Paid Domiciliary Care at the End of Life
  1. Jenny Newbury, Community Palliative Care Nurse Specialist
  1. Dorothy House Hospice Care, Dorothy House Hospice, Winsley, Wiltshire. Email: jenny.newbury{at}dorothyhouse-hospice.org.uk

Abstract

Background: Most informal family carers looking after a dying loved one at home need some help from paid domiciliary carers. These carers are usually care assistants who provide personal care. They are employed by independent domiciliary care agencies. This article is derived from a qualitative study of carers’ expectations of the dying process. It focuses on informal family carers’ experiences of paid domiciliary carers during this period. Aims: The study aimed to examine carers’ expectations of the dying process of the family member for whom they are caring and what helps and does not help them to cope. Methods: Using a grounded theory approach, 15 carers were interviewed in the weeks before the dying phase and again 3 months after the death of their family member. Through an inductive process, a metaphor of carers performing a role in a drama emerged and this changed the focus to dramaturgical analysis. Results: Paid carers perform a vital supporting role but carers reported very mixed experiences. They described standards of care and management that ranged from very good to horrendous. Conclusion: High-quality care is required of all domiciliary care services providing end-of-life care. Specific training and support for care workers and managers may improve standards of care. More research on paid care is needed. Conflicts of interest: none

  • Carers
  • End of Life Care Strategy
  • Paid carers
  • Quality of care and
  • management
  • Specialist end-of-life
  • domiciliary care services

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