Childhood cancer in Nigeria: The effect of a handbook in the experiences of caregivers

Abstract

 Background: Parents of children diagnosed with cancer are handed a frightening diagnosis, with attendant emotional, social, and financial challenges. They often have many questions that remain unanswered by busy doctors and nurses, who are themselves overwhelmed by the challenges of caring for cancer patients in resource-constrained circumstances. The objective of this study is to evaluate the impact of a childhood cancer handbook on the experience of caregivers of children diagnosed with paediatric cancer in Nigeria.
Methodology: A series of focus group discussions involving caregivers of children with histologically diagnosed cancer were held. A childhood cancer handbook was given to each participant to read. Data was collected four weeks later and analysed using qualitative content analysis.
Results: In general, 91.7% of focus group participants reported that they found the handbook useful and having it at diagnosis would have significantly increased their level of information and made dealing with the diagnosis more tolerable. However, many of the participants reported that while the book completely catered to their informational and emotional needs, it did not adequately address certain practical needs such as paying for cancer treatment. Conclusion: Many Nigerian families go through the entire paediatric cancer journey, feeling like they are stumbling in the dark. No dedicated information resource on paediatric cancer exists in Nigeria. The provision of a detailed handbook at diagnosis may reduce the psychological and emotional toll of a cancer diagnosis on parents and family of a child diagnosed with cancer.
Keywords: Paediatric Cancer, Caregivers, Handbook, Cancer Support, Information, Patient Education