And the Beat Goes On: Heartbeat Recordings through Music Therapy for Parents of Children with Progressive Neurodegenerative Illnesses

Abstract

Background: Music is a powerful therapeutic intervention to promote physical and psychological health, healing, and well-being. In pediatric palliative care, music therapists are often involved in preloss care. Heartbeat recordings (HBRs) synchronize the rhythm of the heartbeat into a favorite song. In preloss care, HBRs show promise in helping parents of children with progressive neurodegenerative illnesses (PNDI) cope with their chronic sorrow and the loss of their child. Objective: To explore the lived experience of HBRs for bereavement in the lives of parents of children with PNDI. Design: Phenomenological study. Setting/Subjects: Purposeful sample of 11 English-speaking parents of children with PNDI receiving palliative care services in an academic pediatric hospital were interviewed three months after receiving their child’s HBR. Measurements: A semistructured interview guide was used to collect data concurrently with the mind mapping process. Results: Data from interviews revealed 4 major themes and 10 subthemes: (1) Bifocal View (parental lens vs. medical lens); (2) Navigating Life and Relationships (caregiver fatigue, grief and loss, marriage, job, brought us together, paying it forward); (3) Coping through Spirituality; and, (4) Legacy Creation (HBR as a connection, song selection). Conclusions: Parents of children with PNDI experience chronic sorrow. The HBR assisted in meaning-making that validated the child’s life and supported the parents’ expression of grief and their ability to cope. Further research is needed to validate the impact of HBRs in diverse populations.