Ms Lucy Forrest1,2, Assoc Prof Clare O’Callaghan2,3,4, Emeritus Prof Denise Grocke2
1Monash Health, Melbourne, Australia, 2Melbourne University, Melbourne, Australia, 3Cabrini Health, Melbourne, Australia, 4St Vincent’s Health, Melbourne, Australia
Introduction: Music can be an important part of children’s and family’s lives, especially when a child is unwell.
Aims: To explore how families from diverse cultural backgrounds engage with 1) paediatric palliative care (PPC); 2) music; and 3) music therapy in PPC. To identify barriers and improve access to home-based PPC music therapy services for children and families of diverse cultural backgrounds.
Method: Three studies informed by grounded theory examined the experiences of 1) parents caring for a child/ren aged 0-12 years in PPC (multi-site, repeated interview design); 2) music therapists providing home-based music therapy in PPC (focus group design); and 3) the first author, who provided home-based music therapy in PPC (ethnographic reflections). A fourth study employing a meta-ethnographic methodology was undertaken to synthesise the findings of studies one to three.
Results: Six parents, three music therapists and the first author’s reflections on 34 clinical cases informed 20 themes that describe 1) the palliative care journey; 2) the experience of music and 3) the experience of music therapy for children and families from diverse cultural backgrounds.
Key cultural findings include:
- Migration, cultural shaming and exclusion can increase isolation, reduce access to supports, and impact coping
- Culturally important and meaningful music can support families and help them maintain cultural identity
- Cultural/faith beliefs about music shape engagement with music therapy
- Maintenance of cultural patterns of relationship in music therapy helps ensure access to culturally appropriate services
Significance of the findings to allied health: These findings are significant not only to palliative care, but also other health settings/contexts, increasing understanding of how cultural beliefs and practices can shape patient/family engagement with healthcare services; and guiding development of culturally responsive healthcare services.