The aims of this systematic review are to (1) identify and synthesise available evidence regarding the information needs of children with cancer and their parents to manage cancer-related symptoms and (2) provide practical recommendations on meeting needs of children with cancer and their parents for information about managing cancer-related symptoms.
A systematic literature search was conducted using CINAHL, EMBASE, MEDLINE, PsycINFO and Web of Science. Overall, 13,042 relevant articles were screened independently by two reviewers. Eligible articles included empirical research on information needs related to cancer-related symptoms as well as late effects of cancer treatment in general reported by children aged ≤19 years and/or their parents/guardians’ during and after curative treatment of paediatric cancer.
Ten studies included in this review, of which two used mixed methods design, one used a qualitative methodology, and seven utilised a quantitative methodology. Four studies assessed information needs about late effects, physical/emotional impact of cancer treatment, and/or symptoms management. One study investigated parents’ usage and desires on mobile technology, while the remaining studies focused on explored experiences of cancer-related symptoms. The majority of the included studies focused on parents’ needs for information only. Three studies assessed information needs of both children and their parents, and one of these studies reported separate results for children’s needs for information about symptoms management. Similarly, few studies explored children with cancer and their parents’ preferences for information presentation.
This review revealed a dearth of studies on information needs of children with cancer and their parents for managing cancer-related symptoms. This review will suggest the recommendations for developing educational resources and programs to address children with cancer and their parents’ needs for information about symptoms management.