Music and home-based music therapy for children and families from diverse cultural backgrounds’ in palliative care

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:

  1. Migration, cultural shaming and exclusion can increase isolation, reduce access to supports, and impact coping
  2. Culturally important and meaningful music can support families and help them maintain cultural identity
  3. Cultural/faith beliefs about music shape engagement with music therapy
  4. 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.