Background Family caregivers who assume the responsibility of care for patients living with advanced diseases could have challenges especially in resource-poor settings. The bulk and responsibility for care are predominantly provided by the family caregivers within the informal sector. The family caregivers, therefore, could be described as the ‘general practitioners’ of the patients at home. Using a qualitative study, the experiences of the family caregivers caring for men with advanced prostate cancer were explored.
Methods Using serial qualitative approach, 23 in-depth individual and dyad interviews were conducted. Patients and their caregivers participated in repeat interviews approximately 2 months apart, across a period of up to 6 months. Transcribed interviews were analysed using thematic analysis.
Findings This paper focuses on the experiences of family caregivers in the light of inadequate resources for care. Two main themes emerged from the data: Challenges and burden of care, and the support and coping strategies adopted. The family caregivers expressed the overburden nature of the care, ‘feeling of being alone in the middle of a deep sea’, disruption of their lives, and unhappiness and the fear of an unknown future. On the other hand, they rely on the support of the social network of the extended family, their faith in God, and the positive aspect of living helped to mitigate some of the challenges. The belief in reciprocity and ‘giving back’ through caring for their loved ones were highlighted by participants.
Conclusion Generally, the informal social network helped in the care at home. However, the magnitude of the adverse changes in their lives and challenges associated with the caring role was dependent on factors such as the level of care required, financial and other resources available, and the coping mechanisms in place. Efforts to enhance existing social support systems are recommended.
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