The purpose of this study was to investigate bereaved parents' experiences of music therapy with their terminally ill child. In-depth interviews were conducted with 7 bereaved parents who were recruited through a community-based palliative care program. The parent participants' experiences varied as their children who received music therapy ranged in ages from 5 months to 12 years old. The interview transcripts were analyzed using phenomenological strategies. Five global themes emerged from the analysis. These included (a) music therapy was valued as a means of altering the child's and family's perception of their situation in the midst of adversity, (b) music therapy was a significant component of remembrance, (c) music therapy was a multifaceted experience for the child and family, (d) music therapy enhanced communication and expression, and (e) parents shared perceptions of and recommendations for improving music therapy services. These emergent themes yield knowledge into the relevance of music therapy within pediatric palliative care.
Research into the value of music therapy in pediatric palliative care (PPC) has identified quality of life as one area of improvement for families caring for a child in the terminal stages of a life-threatening illness. This small-scale investigation collected data in a multisite, international study including Minnesota, USA, and Melbourne, Australia. An exploratory mixed method design used the qualitative data collected through interviews with parents to interpret results from the PedsQL Family Impact Module of overall parental quality of life. Parents described music therapy as resulting in physical improvements of their child by providing comfort and stimulation. They also valued the positive experiences shared by the family in music therapy sessions that were strength oriented and family centered. This highlighted the physical and communication scales within the PedsQL Family Impact Module, where minimal improvements were achieved in contrast to some strong results suggesting diminished quality of life in cognitive and daily activity domains. Despite the significant challenges faced by parents during this difficult time, parents described many positive experiences in music therapy, and the overall score for half of the parents in the study did not diminish. The value of music therapy as a service that addresses the family-centered agenda of PPC is endorsed by this study.
It has been my experience that parents are willing and open to express their voices to promote and advocate for music therapy services for their terminally ill children. By listening to parents' voices when providing care for terminally ill children, much can be done to ease the suffering of children and families at the end of life (Widger & Wilkins, 2004). My music therapy masters research at the University of Melbourne with Dr. Katrina McFerran will investigate bereaved parents' experiences of music therapy with their terminally ill child. This inquiry unfolded through my music therapy work with several children and families within hospice and palliative care. Parents have reflected that music therapy was a vital component in their child's care at the end of life. As one mom commented, "I don't care what anyone says, it has made a world of a difference." In order to further explore parents' experiences of music therapy, in-depth interviews will be conducted and transcripts will be analyzed using phenomenological strategies. It has been reported that parents find the interview process helpful in working through grief. They have also reported feeling an overall eagerness to share their child's story in order to provide input that might assist other families in the future (Widger & Wilkins, 2004). This article will describe pediatric palliative and hospice care, discuss parents as advocates for their terminally ill children, portray the use of music therapy within pediatrics, and share an example of music therapy with Jack.
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