Parental experiences of childhood cancer treatment in Kenya

Abstract

Purpose Our study explores socioeconomic, treatment-relat- ed, and psychological experiences of parents during cancer treatment of their children at an academic hospital in Kenya. Methods This cross-sectional study used semi-structured questionnaires. Parents whose children came for cancer treat- ment consecutively between November 2012 and April 2013 were interviewed. Results Between 2012 and 2013, 115 oncology patients attended the hospital and 75 families (response rate 65 %) were interviewed. Cancer treatment resulted in financial dif- ficulties (89 %). More information about cancer and treatment was required (88 %). More contact with doctors was needed (83 %). At diagnosis, cancer was perceived as curable (63 %). However, parents were told by health-care providers that most children with cancer die (49 %). Parents had difficulties with understanding doctors’ vocabulary (48 %). Common reasons to miss hospital appointments were travel costs (52 %) and hospital costs (28 %). Parents (95 %) used complementary alternative treatment (CAM) for their children. Health-care providers told parents not to use CAM (49 %). Parents had not discussed their CAM use with doctors (71 %). Community members isolated families because their child had cancer (25 %), believed that child was bewitched (57 %), advised to use CAM (61 %), and stopped conventional treatment (45 %). Some families (15 %) never disclosed the child’s illness to community members. Parents shared experiences with other parents at the ward (97 %) and would otherwise not understand the disease and its treatment (87 %). Conclusions Parents suffer financial hardships and are dissatis- fied with doctors’ communication regarding their children’s con- dition. CAM is very commonly used. Doctors need to improve their communication skills and discuss CAM more openly. Can- cer programs should include more support for parents: financial assistance, a facility where parents and children can stay during the course of therapy, and parent support groups.