The experiences of Batswana families regarding hospice care of AIDS patients in the Bophirima district, North West province, South Africa

The HIV/AIDS pandemic put significant strain on healthcare services in the country. Hospitals were no longer coping with the escalating number of AIDS patients. This resulted in the early discharge of patients, with some patients, too ill to be nursed at home, being sent to hospices for continued care. The Batswana had mixed feelings about hospice care, because their beliefs on patient care are based on the ubuntu philosophy, which emphasises the principle of caring for one another. The purpose of thisstudy was to explore and describe the experiences of Batswana families regarding hospice care for patients in the Thlabane township in the province of the North West as well as to make recommendations to policy-makers to ensure that hospices are accepted by community members and utilised effectively. A qualitative, explorative, descriptive research design was applied. Purposive sampling was applied to select study participants with whom in-depth unstructured interviews were conducted. A qualitative data analysis was done by categorising, ordering, and summarising the data, and describing the findings. The findings indicated that families of patients in hospice care experienced such care as foreign to their culture. These families also experienced stigmatisation, firstly owing to thestigma associated with AIDS and secondly because they opted for hospice care. However, they also observed the high quality of care provided by the hospice and understood its benefits for AIDS patients. The study concluded that hospice care relieved families of terminally ill AIDS patients of the burden of care and enabled them to keep on working and earning a living. Recommendations to policy-makers included enhancing hospice care and ensuring the provisioning of culturally safe hospice care

Living with AIDS in Uganda: a qualitative study of patients' and families' experiences following referral to hospice

Background: Globally, the majority of people with HIV/AIDS live in sub-Saharan Africa. While the increasing availability of antiretroviral therapy is improving the outlook for many, its effects are yet to reach all of those in need and patients still present with advanced disease. This paper reports findings from qualitative interviews with patients living with AIDS and their caregivers who were receiving palliative care from Hospice Africa Uganda (HAU). We aimed to understand what motivated patients and their families to seek formal healthcare, whether there were any barriers to help- seeking and how the help and support provided to them by HAU was perceived. Methods: We invited patients with AIDS and their relatives who were newly referred to HAU to participate in qualitative interviews. Patients and carers were interviewed in their homes approximately four weeks after the patient’s enrolment at HAU. Interviews were translated, transcribed and analysed using narrative and thematic approaches. Results: Interviews were completed with 22 patients (10 women and 12 men) and 20 family caregivers, nominated by patients. Interviews revealed the extent of suffering patients endured and the strain that family caregivers experienced before help was sought or accessed. Patients reported a wide range of severe physical symptoms. Patients and their relatives reported worries about the disclosure of the AIDS diagnosis and fear of stigma. Profound poverty framed all accounts. Poverty and stigma were, depending on the patient and family situation, both motivators and barriers to help seeking behaviour. Hospice services were perceived to provide essential relief of pain and symptoms, as well as providing rehabilitative support and a sense of caring. The hospice was perceived relieve utter destitution, although it was unable to meet all the expectations that patients had. Conclusion: Hospice care was highly valued and perceived to effectively manage problems such as pain and other symptoms and to provide rehabilitation. Participants noted a strong sense of being “cared for”. However, poverty and a sense of stigma were widespread. Further research is needed to understand how poverty and stigma can be effectively managed in hospice care for patients for advanced AIDS and their families