Home-based care of the terminally ill in Botswana: knowledge and perceptions

Knowledge deficit is a common factor among caregivers in the home, despite efforts initiated to disseminate information on home care. Many districts in Botswana are just beginning to initiate a more structured home-based programme, including counselling, pastoral care and training, to involve the community in providing care for their ill relatives at home. In spite of such endeavours, statistics indicate an alarming rate of readmission to hospital of patients with numerous complications, suggesting poor quality care at home. In addition, there have been anecdotal records of elderly caregivers being diagnosed as human immunodeficiency virus (HIV) positive, indicating that transmission might have occurred during the process of care giving. This report outlines the steps in conducting a descriptive qualitative study, using grounded theory techniques, which assessed the level of knowledge available to families giving care to their terminally ill relatives at home, in a village called Mogoditshane. A sample of 15 families was selected. The inclusion criterion was that the family must have provided care for at least a 3-month period in the home. Findings indicated that families lacked knowledge and skills for providing appropriate care, they were not aware of the resources available and they lacked professional and material support. The study recommended that a good referral and follow-up system should be in place for effective implementation of home-based care, with appropriate procedures for monitoring and evaluation.