A multi-modal family peer support-based program to improve quality of life among pediatric brain tumor patients: A mixed-methods pilot study

Abstract

Background: Pediatric brain tumor (PBT) survivors and their families are at risk for diminished psychosocial and quality of life outcomes. Community-based programs that leverage peer support in the context of integrative modalities such as traditional Chinese medicine (TCM) represent a promising avenue for meeting the multidimensional needs of survivors and their families. Methods: Parents and children were enrolled in a 12-week program that included weekly group TCM, a moderated private Facebook support group designed through social support and modeling theory, and weekly parent-only health behavior education and yoga. Process measures and quantitative and qualitative survey data was collected to gauge participant adherence, acceptability, and satisfaction, as well as exploratory outcomes. Results: Eleven parents completed surveys at all time points. Six of nine families attended at least 80% of the group TCM sessions, and eight of nine families interacted in the Facebook support group at least five days a week. Parents reported high levels of satisfaction and perceived benefits for the program. Baseline emotional distress, health behaviors, and QoL measurements improved during the three-month intervention. Qualitative data indicated parents perceived both in-person and the Facebook group peer support contributed to the benefits of the program. Conclusion: This feasibility study demonstrated that a multimodal peer support-based intervention that included in-person and online group interaction is feasible and acceptable to parents of pediatric brain tumor patients. Further research on interventions for caregivers that include in-person and online group-based peer support is warranted, with the goal of exploring similar outcomes in other childhood cancer diagnoses.