The experiences of caregivers providing home care for terminally ill family members at the end of life: A phenomenological study in Bahrain

Abstract

Objective: The aim of the study was to explore the lived experience of caregivers providing home care for terminally ill family members, with the objectives of describing their experiences of caring for relatives who are terminally ill with cancer and the needs of home caregiving in Bahrain.
Methods: The study adopted a Heideggerian, hermeneutic phenomenological design, with a purposive sample of eight family caregivers. Data was generated through one to one, in-depth interviews and analyzed using Interpretative Phenomenological Analysis.
Results: Three main themes emerged from the data: (1) the burden of care, (2) comforts, and (3) coping. The findings showed that the lived experience of home caregiving includes physical, emotional and financial burdens, combined with a lack of professional support. The collective experience was infused with intense emotions because of a lack of structured support, resulting in negative emotions that frequently affected the caregivers’ well-being and their ability to care for the ill person. Nevertheless, caregivers tried to maintain care and comforts for their terminally ill relative in the home. They adopted the home environment, arranged resources to ease caring and provided psychological care. Caregivers utilized three coping mechanisms, faith, personal strategies and distribution of the care responsibilities among family members.
Conclusions: Caregivers were not prepared for the commitment and burdens of home care when a family member is terminally ill. A recommendation from the study findings is that training be offered on nursing care before patients discharge. In addition, a reactivation of the palliative care clinic hotline service would support family caregivers. A further recommendation is that home nursing care and hospice services be established to improve homecare services for family caregivers in Bahrain.