Barriers and Facilitators to Shared Decision-Making on Venous Access in Childhood Cancer: A Multi-perspective Qualitative Study

Abstract

Background: Childhood cancers, though relatively rare, are a leading cause of disease-related death in children. Chemotherapy, which requires central venous access devices [peripherally inserted central catheters (PICCs)or implantable venous access ports (PORTs)], is fundamental. However, the child’s perspective is often overlooked in device selection. Objectives: This study aims to understand the current status and influencing factors of shared decision-making (SDM) regarding venous access selection from the perspectives of children with cancer and their parents and to explore the facilitators and barriers to children’s participation in SDM, so as to provide evidence for promoting pediatric involvement in clinical decision-making. Methods: A qualitative interview study was conducted using purposive sampling. Twelve children hospitalized in hematology and oncology departments and 14 parents were recruited between May and July 2025. Semi-structured interviews were performed, and the data were analyzed using a grounded theory (GT) approach for coding, category development, and theme extraction. Results: Children’s participation in SDM was influenced by multiple interacting factors. Insufficient information; limited communication with parents or physicians; concerns about decision outcomes; and fear of pain or discomfort led children to adopt passive acceptance or indifference. Conversely, desires for more information, respect, and being heard motivated active engagement. Children’s preferred decision-making approaches varied, including parent-led, physician-led, and shared models. Parental perceptions of their child’s age, maturity, and decision-making capacity directly determined whether they supported the child’s involvement. These perceptions shaped parents’ attitudes, ranging from protective to autonomy-supporting, which in turn influenced their chosen decision-making approach and ultimately determined whether children were genuinely included in the process. Conclusions: This study reveals that SDM regarding venous access in children with cancer is a complex process shaped by the interplay of child, parent, and clinical factors. Although children express a desire to participate, their preferred level of involvement varies and is often limited by information gaps, communication barriers, and psychological concerns. Parental attitudes critically influence whether children are genuinely included. By capturing the perspectives of both children and parents, this study identifies key barriers and facilitators, offering a foundation for developing inclusive, age-appropriate SDM models and communication strategies in pediatric oncology practice and future research.