Perceptions and types of support coming from families caring for patients suffering from advanced illness in Kinshasa, Democratic Republic of Congo.

Résumé

BACKGROUND: Perceptions of families who take care of patients suffering from advanced illness are rarely considered in Kinshasa medical practices; nevertheless, these families are the main actors involved in such care. The objective of this present study was to illustrate, in a Congolese context, the perceptions of families on the care of patients suffering from advanced illness, and to identify the possible aids provided by healthcare facilities.METHODS: A qualitative study was performed among focus groups in six hospitals in Kinshasa. Each group included eight members.RESULTS: We gathered factors that could negatively influence the care of a patient suffering from advanced disease. Such factors included: scarcity of and inaccessibility to painkillers, economic resilience, poor quality treatment, lack of psychological counselling, seeking alternative solutions and poor communication between caregivers and patients. In contrast, the study also showed that relatives caring for these patients often receive support from the wider family and from cult members.CONCLUSIONS: This study focuses on the miscommunication between healthcare workers and patients, poor management in advanced illness as well as a lack of psychological support from caregivers. The findings can serve as basis for further research in palliative care.