Adding a Parent to the Brain Tumor Team: Evaluating a Peer Support Intervention for Parents of Children With Brain Tumors.

Abstract

Childhood brain tumors often present profound challenges to patients and families. To address these challenges, the California Chapter of the Pediatric Brain Tumor Foundation provides hospital-based support services to parents of children with brain tumors from a Veteran Parent (VP). This mixed-methods, cross-sectional study was designed to evaluate the effectiveness of the intervention using validated tools to compare parental resilience and impact of illness on the family between parents who met with the VP and those who did not. Two-tailed t tests assessed significant differences in scores on the PedsQL Family Impact module and Connor-Davidson Resilience Scale (CD-RISC-25). Additional qualitative data gleaned from focus groups with stakeholders (health care providers and parents) were analyzed using key constructs of social support theory with Atlas.ti. Although there were no significant differences in overall scores on the PedsQL Family Impact module or CD-RISC-25 between groups, parents in the intervention group scored better on items related to handling difficult decisions and painful feelings. Overarching themes emerged from focus groups around participants' experiences with the program and included informational and emotional support, peer parent relatedness, changed outlook, and empowerment. Results reveal the impact of peer parent support and need for emotional and instrumental support.