Lived experiences of community home-based palliative caregivers in Ndola

Abstract

Palliative care in Zambia began in the 1990’s due to rising numbers of chronic illnesses of people infected with HIV and rising Non-communicable diseases such as Cancers at 60% in 85% of the Lower Medium Income Countries (WHO, 2014). The study was done in Ndola City, the Copperbelt provincial headquarter of Zambia catering for a population of about 400,000 people. The main objective of the study was to investigate lived experiences of Home-Based Palliative Caregivers of Ndola; in resource support services, psychological and opportunity gaining experiences, as well as challenging experiences. Home Based Palliative Care services remain inevitable under caregivers’ hands with no formal training but there is scarcity of information about their operations in Zambia and yet terminally and chronically ill patient’s demands on them remain very high. A phenomenological study in qualitative research was conducted with in-depth interviews on twelve purposively selected respondents done. An interview guide, a digital recorder for responses and note taking to take care of other observations from non-verbal responses was used. Thematic analysis of manually created themes were arrived at during findings after exploring the lived experiences of caregivers and this method acted to provide a means to uncover deep understanding of the caregivers’ experience perspectives formulated patterns. Findings of negative experiences revealed: lack of team work, limited resource supplies such as inadequate Home Based Palliative Care kits comprising medical and surgical logistics; lack of food supplements to boost nutrition and many more limitations. Caregivers’ duties too were associated with: work over- load, long working hours and cost burdens. In addition to career development was lack of the following: training, refresher courses, technical support supervision and standard guidelines. Whilst positive experiences reported were: hope for employment; feeling respected and highly regarded in their community bringing dignity, sense of self-worth, self-esteem; and self-actualization associated to impacting decisions made on people’s health. This study therefore contributes to growth of research on determinants of health, a basis for further research by students, academicians; researchers to bridge knowledge gaps and provide evidence to inform policy in integrating caregivers’ issues in a wider health care system and address health inequalities. The exploration of these experiences have put together logical evidence to inform policy; enable appreciating the roles of Palliative Caregivers in the general public domain and help integrate this in a wider health care system to provide for further research by students, academicians, researchers and policy makers.