Abstract
Background:
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.
Objectives:
To explore worries/concerns in children with advanced cancer and their parents.
Design:
This was a part of a larger, mixed-methods study examining shared decision-making.
Setting/Subjects:
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.
Measurements:
Children and parents completed the Response to Stress Questionnaire and individual semi-structured interviews. Coders analyzed the qualitative data via thematic analysis.
Results:
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.
Conclusions:
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.
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