The Lived Experience of Caregivers Providing Home Care for Terminal Cancer Patients: A Phenomenological Study

Purpose:

The aim of the study was to explore the lived experience of caregivers providing home care for terminal cancer patients with the objectives of documenting their experiences of caring for relatives who are terminally ill with cancer and the needs of home caregiving in Bahrain.  

Methods:

 The study adopted qualitative, Heideggerian, hermeneutic phenomenological design, with a purposive sample of eight family caregivers. Data was collected through one to one, in depth semi-structured interviews and analyzed using Interpretative Phenomenological Analysis. 

Results:

Three main themes emerged; Burdens of Care; Comforts; and Coping. The findings showed that the lived experience of home caregiving includes physical, emotional and financial burdens combined with lack of professional support. The collective experience was infused with intense emotions given the lack of adequate support that often forced caregivers to manage caregiving on their own which eventually led to negative effects in caregivers’ well-being. Nevertheless, caregivers tried to maintain comforts for patients at home. They changed the home arrangement, arranged resources to ease caring and provided spiritual care. Caregivers utilized three coping mechanisms, faith, personal strategies and distribution of the care responsibilities among family members.

Conclusion:

Caregivers were not prepared for home care and a recommendation from the study findings is that training should be given on nursing care before patients discharge. In addition, home nursing care and hospice services need to be established to improve the supportive services for caregivers. The findings of the study will hopefully lay the foundation for the development of palliative care services which will ease the burden of care on caregivers in Bahrain.