Music as Supportive Care for Young Children with Sickle Cell Disease and their Parents: A Three-phase Qualitative Exploration into the Cultural Relevance of Active Music Engagement with Black Families.

Background: There is a marked absence of supportive care programs to address the significant distress experienced by young children with Sickle Cell Disease (SCD) and their parents. Active Music Engagement (AME) is an evidence-based music therapy intervention that uses dyadic music play to mitigate interrelated parent-child distress during cancer treatment. The purposes of this study were to explore the cultural relevance of AME for Black children and parents and its potential utility during SCD treatment. Methods: We conducted a three-phase qualitative study that included interviews with five Black parents of children (ages 3-8 years) with SCD, interviews with four additional parents/children after experiencing a music therapist facilitated AME experience and focus group sessions with a three member Black Music Therapist Advisory Board. We used thematic analysis to analyze data and synthesized findings across all three phases. Results: Five themes and fourteen sub-themes emerged from the analysis. Theme One described the SCD experience as a dynamic journey. Theme Two offered insights into the prevalence and function of music within Black families. Themes Three, Four, and Five offered specific recommendations to improve the AME experience for Black families. Results indicated high prevalence and diversity of music in Black lives, and the importance of culture to support AME engagement. Therapists endorsed theoretical principles that inform the structure and tailored delivery of AME, with therapist and parent recommendations centered on the importance of providing experiences that affirm Black families' values, culture, histories, and natural forms of expression. Black families and therapists also acknowledged the importance of shared cultural knowledge when receiving and providing care. Conclusions: These findings support the potential utility of AME to reduce stress experienced by young children with SCD and their parents, and the importance of ongoing collaboration between Black families, Black therapists and non-Black team members, prioritizing the input and engagement of Black families, alongside the leadership of Black therapists.