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

Music therapy in paediatric palliative care: A scoping review

“…Four of the studies used interviews: Amadoru and McFerran (2007) investigated the perceptions of staff members who had witnessed the implementation of music therapy at a children’s hospice, Steinhardt et al (2021) explored the parental and nurses’ experiences of music therapy as a hospital-at-home service, and Lindenfelser et al (2008) focused on parents’ experiences of music therapy with their terminally ill child. Walden et al (2021) used a semi-structured interview guide to collect data concurrently with a mind-mapping process to explore the lived experience of heartbeat recordings. Two studies have a mixed-methods exploratory design: one looks at the effectiveness of live music therapy and vibroacoustic music therapy on reducing pain and distress and increasing contentment (Clark et al, 2017), while the other concerns the overall parental quality of life (Lindenfelser et al, 2012).…”

“…In these studies (Clark et al, 2017; Giordano et al, 2022; Hilliard, 2003; Steinhardt et al, 2021), the goal of palliative measures is to enhance the quality of life in all phases of the illness by providing physical, emotional and psychosocial comfort and addressing spiritual concerns using an interdisciplinary approach. Walden et al (2021) describe paediatric palliative care by mentioning that music therapists are often involved in pre-loss care. Clark et al (2014) sum up paediatric palliative care as a highly specialised field which requires knowledge of rare conditions, the flexibility to meet changing needs, expertise in family grief and loss, and an ability to adapt the interventions to meet client needs even when existing research and best practices related to a given condition are limited.…”

“…Music therapists assist families and caregivers with coping, communication, grief and bereavement and facilitate family communication (Giordano et al, 2021;Lindenfelser et al, 2008Lindenfelser et al, , 2012Walden et al, 2021). In addition, bereaved parents have noted that music therapy helped them form lasting positive memories (Rapoport and Weingarten, 2014), and music therapy can also be a significant component of work with remembrance.…”

Assessing HeartSong as a Neonatal Music Therapy Intervention

“…Bereavement was the first area of support where the HeartSong was identified by both professional and personal caregivers in legacy and memory building, enhancing feelings of connectedness, which is supported by literature from pediatric palliative care. Schreck et al30 described that parents of children with neurogenerative disorders felt that a living memory, that is, heartbeat recording, was more powerful than a static memory (eg, photographs and locks of hair), and knowing that the recording was there was comforting in itself. Others report on the use of their version of a heartbeat intervention, showing that the use is variable and that parents are grateful for the gift of this intervention 31.…”

Music Therapy for Children with Oncology & Hematological Conditions and Their Families: Advancing the Standards of Psychosocial Care

“…Music therapists provide creative opportunities to address the physical (symptom management), psychological (coping, self-expression), social (bonding, connectedness), and spiritual (meaning-making, legacy) needs of patients, families, peers, and staff. In addition to pain and symptom management strategies described under PSS8, music experiences like active music making, songwriting, and heartbeat recordings are used to support social connectedness, create positive memories, and promote self-expression during treatment and at end-of-life (Daveson, 2001; Duda, 2013; Hilliard, 2003; Walden et al, 2020).…”