Melbourne Conservatorium of Music - Theses
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ItemParents' and music therapists' reflections on the experience of music and home-based music therapy for paediatric palliative care patients and their families, who come from diverse cultural backgroundsForrest, Lucy Christina ( 2017)Music can be an important part of many young children’s lives, especially when a child is unwell, or dying. In recent years, the use of music therapy with children in paediatric palliative care (PPC) has become more widespread, across hospice, hospital and home settings. This qualitative inquiry investigated the experience of music, and home-based music therapy for PPC patients and their families, who come from diverse cultural backgrounds. The inquiry employed a constructivist approach and was informed by grounded theory and meta-ethnography. The inquiry examined how children in PPC and their families experience music, and music therapy in PPC, with a focus on how cultural beliefs and practices shape experience. The inquiry also identified barriers to accessing PPC, music, and music therapy for children and families of diverse cultural backgrounds. Four studies were conducted as part of this inquiry. Study One employed a repeated-interview design to interview six parents of children in PPC about their experience of music and music therapy in caring for a child in PPC. Five mothers and one father participated in an initial interview; and three of the mothers also participated in a six-month follow-up interview, to capture in-the-moment experiences and changes over time. Study Two employed a focus group design to interview three music therapists about their experience of providing music therapy for children and families of diverse cultural backgrounds in home-based PPC. Study Three employed an ethnographic approach for the author to reflect on her work in home-based PPC music therapy with 34 children and their families. Twenty themes emerged from the analysis of Studies One to Three, based around three distinct foci: the palliative care journey; the experience of music; and the experience of music therapy. Study Four conducted a meta-ethnography of Studies One to Three. The meta-ethnography provided a rich and detailed description of how children and families from diverse cultural backgrounds experience PPC, music and home-based music therapy; and also identified barriers to access. Key findings included: 1) Migration, length of time in Australia and cultural shaming can impact isolation, coping, and access to support; 2) Families want music therapy for their child, even if music is not part of their culture or family life; 3) Music can support family health and wellbeing, although the presence of multiple stressors in the family’s life can inhibit use of music; 4) Families use music to express their culture and maintain their cultural identity; 5) Music therapy can support families who have few/no family or other supports, reducing carer stress and isolation, and enhancing parental coping; 6) music therapy can uphold and support cultural and community patterns of relationship in the face of life-threatening illness; 7) child and family experiences of palliative care can be transformed in MT, positively impacting parental coping; and 8) the emotional intensity of music therapy in end-of-life-care can be overwhelming, and lead to family disengagement from music therapy. The thesis makes an important contribution to the fields of music therapy and PPC, in developing understanding of how culture impacts family experiences of PPC, music, and music therapy; and also offers insight into the complexities of conducting research with the highly vulnerable population of children in PPC.