Children with a life limiting condition and their families spend the greatest proportion of time at home in their local community. Building capability of generalist health and social care professionals in paediatric palliative care (PPC) improves access to palliative care for children with a life limiting condition (LLC) and their families, wherever they live in Australia. 

 

To explore and understand the lived experiences of parents of children with a LLC to enhance PPC  education in Australia, and in turn enhance access to a palliative approach in a child’s local community.

 

The experience of parents caring for a child with a LLC and bereaved parents were gathered via telephone interview. Participants included: 11 parents (n=9 mothers; n= 2 fathers) of children with a LLC (n=2) or whose child had been referred to the service and had since died (n=9). Inductive thematic analysis evoked the experiences, meanings and realities of participants.

 

Two overarching themes and six sub themes were reported:  1) Burden of suffering, through which parents described grieving for the life once anticipated, confronting a myriad of life transitions, while seeking quality of life for their child, and, 2) Umbrella of support, where parents took a pragmatic approach to building partnerships with health care teams, activated a network of care around their child and family, and sought a response to the needs of their whole family.

This study integrated a relational learning approach with education grounded in the vicarious relationships formed between parents sharing their experience and professionals seeking education in PPC. Learning with and from the lived experience in paediatric palliative care education enhances the preparedness of generalist health and social care professionals to join a child and their family throughout the various practical, emotional and existential life transitions they face.