Palliative care needs and preferences of female patients and their caregivers in Ethiopia: A rapid program evaluation in Addis Ababa and Sidama zone.

Abstract

In Ethiopia there is an extensive unmet need for palliative care, while the burden of non-communicable diseases and cancer is increasing. This study aimed to explore palliative care needs and preferences of patients, their caregivers, and the perspective of stakeholders on service provision in palliative programs for women, mostly affected by cervical cancer and breast cancer. A rapid program evaluation using a qualitative study approach was conducted in three home-based palliative care programs in Addis Ababa and Yirgalem town, Ethiopia. Female patients enrolled in the programs, and their primary caregivers were interviewed on palliative care needs, preferences and service provision. We explored the views of purposely selected stakeholders on the organization of palliative care and its challenges. Audio-taped data was transcribed verbatim and translated into English and an inductive thematic analysis was applied. Descriptive analyses were used to label physical signs and symptoms using palliative outcome scale score. A total of 77 interviews (34 patients, 12 primary caregivers, 15 voluntary caregivers, 16 stakeholders) were conducted. The main physical complaints were moderate to severe pain (70.6%), followed by anorexia (50.0%), insomnia, nausea and vomiting (41.2%). Social interaction and daily activities were hampered by the patients' condition. Both patients and caregivers reported that programs focus most on treatment of symptoms, with limited psychosocial, emotional, spiritual and economic support. Lack of organizational structures and policy directions limit the collaboration between stakeholders and the availability of holistic home-based palliative care services. Although female patients and caregivers appreciated the palliative care and support provided, the existing services did not cover all needs. Pain management and all other needed supports were lacking. Multi-sectorial collaboration with active involvement of community-based structures is needed to improve quality of care and access to holistic palliative care services.