"If We Don't Beat It, How Long Will It Take?" Worries and Concerns of Children with Advanced Cancer and Their Parents

Navigating pediatric advanced cancer is challenging for children and parents, resulting in increased risk for psychological distress. While research has explored parent worries/concerns, few studies have included children's perspectives. To explore worries/concerns in children with advanced cancer and their parents. This was a part of a larger, mixed-methods study examining shared decision-making. Children (of age 5-25) with advanced cancer (i.e., relapsed/refractory disease or physician estimated prognosis of <60%) and their parents in the Midwestern United States. Children and parents completed the Response to Stress Questionnaire and individual semi-structured interviews. Coders analyzed the qualitative data via thematic analysis. Parent and child worries/concerns included: (1) prognosis, (2) symptom burden and side effects of treatment, (3) emotional well-being, (4) impact on future, and (5) no concerns/uncertainty (child-only theme). Benefit-finding emerged as a minor theme. Many expressed concerns about treatment response, resulting in worries about death/dying. Others shared fear about managing current symptoms and the impact of long-term treatment side effects on the child's future. Parents reported worry about their child's emotional well-being, while children expressed worries about their families if they died. While all parents were able to identify worries/concerns, some children denied worries/concerns. Quantitatively, parents similarly identified worries about prognosis and symptom burden but also endorsed concern about being unable to help their child feel better. Our findings highlight similarities and differences in worries/concerns among children and parents as they navigate a child's advanced cancer journey. Early integration of palliative care may be helpful in mitigating these issues.