Shifting perspectives and transformative change: Parent perspectives of an active music engagement intervention for themselves and their child with cancer

Author:

Stegenga Kristin1ORCID,Henley Amanda K.2,Harman Elizabeth3ORCID,Robb Sheri L.3

Affiliation:

1. Division of Hematology/Oncology/BMT Children's Mercy Kansas City Missouri USA

2. Herron School of Art and Design Indiana University Indianapolis Indiana USA

3. School of Nursing Indiana University Indianapolis Indiana USA

Abstract

AbstractBackgroundChildren with cancer (ages 3–8 years) and their parents experience significant, interrelated distress associated with cancer treatment. Active music engagement (AME) uses music‐based play and shared music‐making to mitigate this distress. To advance our understanding about how AME works and its essential features, we interviewed parents who received the AME intervention as part of a multi‐site mechanistic trial. The purpose of this qualitative analysis was to describe parents’ experiences of AME for themselves and their child and to better understand how the intervention worked to lower parent–child distress.ProcedureWe conducted a total of 43 interviews with parents/caregivers, and purposively analyzed all interviews from underrepresented groups based on race/ethnicity and parent role. We used thematic analysis and achieved thematic redundancy after analyzing 28 interviews.ResultsThe following statement summarizes resulting themes: Music therapists skillfully use AME to create a safe and healthy space (Theme 1), where parents/children have transformative experiences (Theme 2) that lead to learning and enactment (Theme 3) of new skills that counteract suffering (Theme 4) through empowerment, connectedness, and sustained relief.ConclusionsThis work elucidates how AME works to counteract stressful qualities of cancer treatment. As parents witnessed positive and transformative changes in their child, they experienced relief and reported shifts in their perspective about cancer treatment. This led to learning and use of music as a coping strategy that extended beyond therapist‐led sessions. Accessible, music‐based interventions, like AME, offer a developmentally appropriate and effective way to support parents and young children during treatment.

Funder

National Cancer Institute

Publisher

Wiley

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