Family caregivers' experiences of caring for children diagnosed with haematological malignancies receiving chemotherapy in Ethiopia: A qualitative study

Purpose: Studies from different countries show that caregivers of children with haematological cancer receiving chemotherapy encounter substantial distress when witnessing their children's suffering from the illness and chemotherapy side effects, alongside experiencing psychosocial problems and financial difficulties. However, no studies for this are available from Ethiopia in its specific cultural background and health care system. Thus, this study aimed to explore and bring into light the experiences of Ethiopian family caregivers of children with haematological malignancies receiving chemotherapy.

Methods: A qualitative descriptive study was conducted using a maximum variation purposive sampling method among 20 caregivers. Semi-structured in-depth face-to-face interviews were conducted until no new themes discovered. The data were analysed through qualitative thematic analysis.

Results: Participants believed cancer comes from different reasons and chemotherapy is ineffective in curing cancer. They identified various chemotherapy-related side effects, and psychosocial problems. The lack of health insurance, loss of job or income, and high cost of treatments were the major financial challenges. Adhering to treatments, acceptance and reassurance, religious and spiritual therapies, traditional medicine, and a support system were the major coping strategies. They had needs for improved support in information and education, psychosocial support, and in the availability of medications.

Conclusions: Systematic health assessment, provision of targeted information and education, psychosocial support, nursing care respecting the caregivers' positive coping strategies, improvement in chemotherapy medication availability, and facilitating connections with supporting organisations would help improve child outcomes and address caregiver needs.