Parents' Experiences and Clinicians' Perceptions of Managing Cancer Pain in Young Children at Home

Pain is a prevalent and distressing symptom for children with cancer, negatively affecting quality of life and family functioning. While most research focuses on hospital-based care, many pain episodes occur at home, where parents act as primary caregivers with limited access to evidence-based symptom management. Young children are particularly vulnerable due to limited self-reporting capacity and reliance on parental assessment. We aimed to explore parent experiences and pediatric oncology clinician perceptions of young children's cancer pain at home, its impact on families, and recommended supports.

Using an interpretive descriptive qualitative design, we conducted semi-structured interviews with parents of children aged 2-11 years undergoing outpatient cancer treatment and clinicians at two hospitals in Canada and the United States. Data were analyzed using thematic analysis.

In total, 21 parents and 21 clinicians participated. Three themes were developed: (1) the multifaceted experience of young children's cancer pain at home, (2) the ripple effects of a young child's cancer pain on the family unit, and (3) assessing and treating children's cancer pain at home.

Managing cancer pain at home places substantial emotional and practical demands on the families of young children. Our findings highlight that structured supports providing parents and clinicians with education, effective communication pathways, and collaboration opportunities may optimize home-based pain care, reduce caregiving burden, and improve outcomes for children and their families.