Preparedness, resilience and unmet needs of informal caregivers of advanced cancer patients in a Regional Mission Hospital in Kenya: Qualitative Study

Abstract

Abstract Background Cancer is the third highest cause of death in Kenya. Eighty percent of cancer cases arrive at advanced stages, when there is nothing that can be done to cure them, and palliative care is the best alternative. Although the majority of end-of-life care in Kenya is provided at home, little is known about the caregivers’ preparedness, resilience and continued unmet needs. The goal of this qualitative study was to explore caregivers’ perceived preparedness, resilience and continued unmet needs in their caregiving role to patients with advanced stages of cancer. Methods A purposive sampling method was used to identify and recruit twelve informal, home-based caregivers of patients with advanced cancer from Kijabe Palliative Clinic data base. Interviews were conducted in patients' homes. The data was analyzed using interpretive phenomenological analysis approach. Ethical considerations were observed. Participants were kept anonymous and confidentiality. Results Competing tasks, lack of preparedness in handling end-of-life care for patients in advanced stages of cancer were the main concerns. Continued unmet needs and financial stresses, and vulnerability for female caregivers all contributed to increased caregiver burden in this study. Caregivers were however determined and resilient amidst challenges that faced them, they exhibited hope against hopelessness. Some caregivers were vulnerable and faced potential for abuse following anticipated loss of their family member exacerbated psychosocial stress and needs Conclusion Informal caregivers had common unmet needs related to caring for their advanced cancer patients. Whilst family caregivers had huge caregiver burden, insurmountable practical challenges related to role overload and competing tasks, they remained resilient though unprepared in giving end of life care. Recommendations Caregivers should also be examined, prepared, and supported during clinic reviews. More research is needed on the use of telephones for caregiver follow-up, the impact of introducing caregiver-targeted screening tools on caregiver quality of life and their impact on enhancing caregiver well-being in order to prepare & support them adequately for the caregiving role.