Information Needs and Preferences on Cancer-Related Symptoms Among Children with Cancer and Their Parents: A Systematic Review

Objective: This study aimed to explore information needs and preferences of children with cancer and their parents about cancer-related symptoms. Methods: A systematic review of the literature was conducted using five databases and citation searches. The quality of eligible studies was assessed with the Mixed Methods Appraisal Tool. Results: Thirty studies were included (N=256 children and N=1778 parents/guardians). Children’s perspectives on their information needs were under examined and different from their parents. Both children and parents required more information about symptoms and late effects. Associations between participants’ characteristics and their information needs about symptoms and late effects were inconclusive. Parents preferred to receive information from doctors, in verbal and written formats, more than from online sources. Conclusions: Children with cancer and their parents need more tailored information about symptoms and late effects. Further research is required to identify how best to support individualized information needs and delivery preferences of children with cancer and their parents.