The Emotional and Spiritual Well-Being of Hospice Patients in Botswana and Sources of Distress for Their Caregivers

Background: Little regional data exists on the distress of people nearing the end of their lives and their caregivers. Objective: The purpose of this study was to describe the quality of life and the emotional and spiritual well-being of people at the end of life and the sources of distress for their primary caregivers in Gaborone, Botswana, in order to inform further development of hospice services. Design: This study employed a mixed-methods design. Setting/subjects: Twenty-eight primary caregivers who cared for an adult who passed away fewer than 14 months prior to the interview date and in the care of a nongovernmental hospice in Botswana were interviewed between June and August 2012. Measurements: Semistructured interviews and the Quality of Death and Dying questionnaire (QODD) were used. Quantitative descriptive analysis and qualitative content analysis were performed. Results: Quality of life of decedents was poor. Emotional and spiritual distress persist at high rates even for those receiving support from a nongovernmental hospice (NGH). Caregiver distress arises from practical needs, including lack of food, clothing, and shelter, the need for assistance physically caring for their loved one, and from emotional and spiritual concerns. Conclusions: The practical, physical, emotional, and spiritual needs of people at the end of life in Botswana and their caregivers are not being fully met, with poor overall quality of life among the dying. More research is needed to explore how hospice and home health services and the services of spiritual leaders can be expanded to meet their needs.