Parental role in paediatric cancer treatment decision making at Tikur Anbessa Specialized Hospital, Ethiopia: Mixed method study

Abstract

Abstract Background Preferences for parent involvement in treatment decision-making vary between passive, collaborative, and active, depending on different factors. This study explores the parental role in pediatric cancer treatment decision-making (TDM) in Ethiopia and identifies the factors which determine this role. Methods The study combines a cross-sectional survey and a phenomenological interview study. In total 167 parents of children with cancer participated in the survey. Control Preference Scale for Pediatrics (CPS-P) and Krantz Health Opinion Survey (KHOS) were used to measure parentalTDMroles. In addition, 11 interviews with selected parents were conducted. Logistic regression and thematic analysis were used for quantitative and qualitative components. Results The Ethiopian parents preferred a passive role in TDM. Trust in health care providers and parental information preferences were statistically significant predictors of the passive parental role. Parental decision-making was associated with the quality of the parent-healthcare provider relationship, the child's clinical condition, parental beliefs towards TDM, and knowledge about cancer disease. Conclusions The study contributes insights into the parental role in TDM in Ethiopian pediatric oncology care, which has not been explored before. Parents’ preferences in TDM are essential for Ethiopian healthcare providers to consider in order to align expectations in communication and make patients' voices heard. The findings emphasize the importance of enhancing more active parental TDM by facilitating educational sessions for parents, developing guidelines for parental education, and providing information about cancer to people from different parts of the country.