EXPERIENCES OF HOME-BASED CAREGIVERS OF ADVANCED CANCER PATIENTS FROM A REGIONAL FAITH-BASED PALLIATIVE CARE CENTER IN KENYA

Abstract

Cancer is the third leading cause of mortality in Kenya. Eighty percent of cancer cases present at advanced stages, when little curative care can be done and palliative care is their best option of care. Majority of the end of life care in Kenya is done in the home setting, yet little is known about the caregiver‟s lived experiences. This qualitative study was done with the following objectives: to explore caregivers‟ burdens, to identify the perceived effects of caregiving on primary caregivers and to identify perceived sources of support for caregivers. A purposive sampling method was used to recruit participants from the palliative clinic. Data was collected using 12 in-depth interviews and direct observation in the patients‟ home settings. A thematic analytic method was used to analyze the data. Caregiver burden in this study was mostly due to competing tasks, lack of knowledge in managing the symptoms, difficult hospital experiences and financial strains, and vulnerability for female caregivers. Consequently, caregiving had a physical, emotional, psychological and financial impact on the caregivers. Their support systems, which still do not meet caregivers needs; include family members, the neighbors and community, religious institutions, and healthcare workers. Recommendations include the establishment of coordinated efforts with the palliative care team and healthcare workers in dispensaries to support families in end of life care and to introduce the use of phones to aid in the follow up and support of caregivers. Family conferences should include sessions on how to care for and support the primary caregiver. During clinic reviews, caregivers too should be screened and supported accordingly. Further studies are needed to look into the use of telephones for follow up of caregivers, the introduction of caregiver-targeted screening tools on their quality of life and their impact on improving caregivers‟ well-being and the prevalence of gender-based violence among caregivers.