Parent Social Buffering and Dyadic Music Intervention to Decrease Distress in Infants and Young Children during Hematopoietic Stem Cell Transplant and their Parents

Indiana University Indianapolis, Indianapolis IN

Investigators

Abstract

Project Summary Infants and young children (IYC) make up nearly 50% of all pediatric Hematopoietic Stem Cell Transplants in the U.S. each year. HSCT is a high-risk treatment that requires lengthy hospitalization (min. 4 weeks), repeated invasive procedures, and high symptom burden. IYC (< 3 years) and parents experience sustained and severe distress during HSCT, with as many as 80% of children and 56% of parents reporting moderate to severe post-traumatic stress symptoms (PTSS) after treatment. Developmentally, IYC cannot effectively self- regulate and rely on parents to manage and buffer the impact of stressful events. High parent distress makes this buffering process less effective, leaving IYC vulnerable to unrelenting stress and medical trauma. Despite the significant and prolonged symptom distress experienced by IYC and their parents, there is a glaring absence of empirically validated interventions for this age group. To fill this gap, the overall scientific objective of this application is to adapt and evaluate an existing music-based intervention (Active Music Engagement; AME) to be developmentally appropriate for IYC and the HSCT treatment context, to promote parent buffering behaviors and decrease distress for both the IYC and their parent. The central hypothesis is that the adapted AME intervention will produce a clinically meaningful decrease in distress during HSCT in IYC and their parent. We will accomplish this research across 2 separate but related phases. In the K99 phase: First, (Aim 1) we will describe patterns of parent buffering behaviors, IYC distress, and parent distress across HSCT admission using a multi-case approach and parent interviews (n=6 parent/IYC dyads). Then, (Aim 2a) we will adapt the AME intervention based on existing research, relevant theoretical constructs, and findings from Aim 1. Finally, (Aim 2b) we will further refine AME through a series of n-of-1 optimization studies. In the R00 phase, we will conduct a small two-group randomized controlled pilot trial (n= 16 parent/IYC dyads) to (Aim 3) evaluate the feasibility and acceptability of the adapted AME and attention control condition for parent/IYC dyads during HSCT; and (Aim 4) determine if the adapted AME produces minimally clinically important differences (MCIDs) on measures of parent/IYC distress and that the attention control condition does not produce MCIDs. The overall goal of the mentored training program is to position Dr. Harman to have the skills needed to become an independent investigator in behavioral oncology with a focus on music-based interventions to mitigate distress and medical trauma in IYC and their parents. The proposed training plan encompasses four key areas: (1) developmental and trauma-related theories, (2) intervention development and trial design, (3) advanced statistical modeling and dyadic analysis, and (4) multi-site trial management. Findings will significantly impact our understanding of parent buffering behaviors and the distress experienced by parents and IYC during HSCT and provide an empirically tested intervention currently unavailable for our youngest patients at risk for long-term adverse health outcomes related to sustained and escalating distress.