ABSTRACT
Background and Aims: Children and adolescents < 18 years (C&A) report varying treatment decision-making (TDM) preferences and experiences that might be distinct from what has been reported by their parents and clinicians. Identifying these distinctions will provide insight into care practices to meet child and adolescent's communication needs. Method(s): Using Joanna Briggs Institute meta-aggregation methods, we conducted a qualitative systematic review of the literature to describe child and adolescent (C&A) self-reported preferences for being involved in making their cancer treatment decisions (CTD). Parent or clinician responses were purposefully excluded from this review. PubMed, PsychINFO, CINAHL and SCOPUS database searches were completed in November 2019 and updated March 2022. Covidence screening software identified 46 studies (n=461 C&A across 15 countries) for synthesis and meta-aggregation (PROSPERO ID: CRD42021219107). We used Atlas.ti qualitative analysis software to extract and code C&A self-reported study findings. Result(s): Children and adolescents' self-reported experiences yielded nuanced TDM preferences. Decision types ranged from daily care decisions (e.g. pill vs. liquid medication) to disease-directed decisions (e.g. clinical trial) across the illness continuum. Many C&A did not perceive that there was a treatment choice to make other than following doctors' recommendations. Most C&A reported preferences for trusted adults (parents/clinicians) to make decisions;however, some youth also reported preferences to make their CTD. Younger children focused on daily care decisions related to their treatment, not CTDs. The youngest ages (<5 years) identified that complying with daily care is a decision. Children and adolescents also articulated their rationale for choices made. Conclusion(s): Our meta-aggregation provides a world wide description of child and adolescent cancer treatment decision-making. We also identified different contexts throughout the illness continuum that influence communication and decision-making at various stages of development. Synthesized findings from child and adolescent voices will identify evidence-based practice recommendations with a focus on meeting child and adolescent communication needs.