Mrs Maria Heaton1
1South Easter Sydney Local Health District (SESLHD), Sutherland, Australia
Biography:
Maria Heaton has 3 children Danica, Tristan and Tiarna. Tristan and Tiarna were diagnosed with a rare genetic life limiting condition called Lissencephaly. Her family were linked to palliative care services for 16 years. Maria was the paediatric palliative care CNC for 12 years and is the SESLHD Intellectual Disability Palliative Care Lead CNC. Maria was the 2012 NSW Carer of the Year and is the co-chair of the Agency for Clinical Innovation (ACI) Intellectual Disability Network.
She served on the NSW Carers Advisory Council, been on the Council for Intellectual Disability Board and has a Masters in Nursing Education.
Abstract:
Background:
Parents of children with life-limiting conditions navigate a journey without a guidebook—marked by uncertainty, profound emotional shifts, and significant impacts on the entire family unit. Siblings, parents, and caregivers experience changes in identity, daily life, grief, and meaning-making that can endure long after a child has died. Palliative care professionals play a crucial role in supporting families through this evolving experience.
Aims:
This presentation seeks to illuminate:
–The multifaceted impact of paediatric life-limiting conditions on families
–The importance of compassionate, integrated, and flexible palliative care approaches
–Lessons for nurses from both clinical expertise and lived experience
Approach / Methods:
Drawing on 12 years of clinical practice in paediatric palliative care and current work as an Intellectual Disability Palliative Care Clinical Nurse Consultant, this presentation integrates professional insights with personal lived experience. The experiences of the presenter’s children—both diagnosed with Lissencephaly, supported by paediatric and adult community palliative care services, and cared for at home through end of life—form a narrative case example.
Discussion:
The presentation will explore:
–Family needs across the illness trajectory
–The role of palliative care in enabling choice, dignity, and comfort
–Effective communication and relational practice
–Opportunities and barriers encountered in service delivery
-The influence of clinician behaviours—both positive and distressing—on family wellbeing and grief
Conclusion:
Understanding paediatric palliative care through both clinical and family perspectives offers unique insights into how services can better meet the needs of children and those who love them. By adopting a holistic, family-centred approach, palliative care nurses can profoundly support families to live, care, and grieve in ways that honour their child’s life.
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