Seeing the child first: A vision for paediatric palliative care in Aotearoa

When Dr Gemma Aburn talks about paediatric palliative care, she does not begin with illness. She begins with children. She begins with pēpi, tamariki and rangatahi who love music, laugh with their siblings, argue about bedtime, dream about the future, and deserve the opportunity to live as fully as possible, regardless of the challenges they face. That simple but powerful belief has shaped her career as both a clinician working as a Paediatric Palliative Care Nurse Specialist at Starship, and more recently a Children’s Community Nurse Specialist in the Waitākere area, and as a researcher and educator at the University of Auckland.

For many years, Gemma witnessed a reality that troubled her. The quality of paediatric palliative care available to children across Aotearoa varied and depended on where they lived. While specialist support existed, clinicians in regional centres had limited access to formal training in paediatric palliative care. Yet these healthcare professionals were caring for children and supporting whānau through some of the most difficult moments of their lives.

Dr Gemma Aburn

Rather than accepting this inequity, Gemma asked an important question: How can we ensure that every child and whānau receives compassionate, culturally safe, high-quality care, no matter where they live?

With support from the AMRF, she set out to find an answer.

Working alongside an experienced team of researchers and clinicians, including Dr Tess Moeke-Maxwell, Dr Ross Drake, Dr Deborah Raphael and Professor Merryn Gott, Gemma led the development of New Zealand’s first formal national paediatric palliative care education programme. The programme was designed specifically for Aotearoa and adapted from the internationally respected Education in Palliative and End-of-Life Care for Pediatrics (EPEC-Pediatrics) curriculum. But this was never intended to be a simple copy-and-paste exercise.

Gemma knew that meaningful education needed to reflect the realities of New Zealand families and communities. It needed to recognise the importance of culture, relationships and whānau. Most importantly, it needed to support clinicians caring for both Māori and non-Māori children in ways that were respectful, relevant and grounded in local knowledge.

The team took their workshops into regional communities, including Wellington, Christchurch and Northland. Clinicians from a wide range of disciplines gathered to learn, share experiences and build confidence in caring for children with serious illness. Alongside the education, Gemma conducted research to better understand what healthcare professionals needed in order to provide excellent care.

What they found was both encouraging and revealing.

Healthcare professionals were eager to learn and committed to supporting children and families. However, significant gaps existed in knowledge, particularly around communication, relational aspects of care, tikanga Māori and symptom management. The education programme helped address these gaps, and participants consistently reported greater confidence and practical learning that could be immediately applied in clinical care. In fact, every participant was able to identify learning they could take back into their practice.

For Gemma, this confirmed something she had long suspected. The challenge was never a lack of commitment from clinicians. It was a lack of access to the right support and education.

Thanks to the programme, hundreds of healthcare professionals have now received paediatric palliative care training tailored to the New Zealand context. More importantly, children and whānau stand to benefit from healthier systems, more confident clinicians and stronger local support networks

“Every child deserves to be seen first as a child. And every whānau deserves care that honours who they are, where they live, and what matters most to them.”

One of the most significant outcomes of the project emerged from close collaboration with whānau, health professionals and kaumātua.

In 2025, Gemma’s work reached an important milestone with the academic publication of Te Whare Kaiao, an Indigenous-informed paediatric palliative care framework developed in partnership with health professionals, whānau with lived experience, and Te Ārai Kāhui kaumātua.

The framework reframes paediatric palliative care from being synonymous with end-of-life to one centred on helping children live well and reach their full potential for the time they have. The 2025 publication highlighted the need for culturally grounded, whānau-centred approaches to care and provided a practical framework to guide clinical services, education and future research across Aotearoa New Zealand.

Alongside this work, Gemma continued expanding New Zealand’s first formal paediatric palliative care education programme into a University of Auckland short course, helping equip clinicians throughout the country with the knowledge and confidence to provide high-quality care for children with serious illness and their families. Together, these achievements are helping strengthen paediatric palliative care services and ensure that the voices and experiences of whānau are central to how care is designed and delivered.

Importantly, Te Whare Kaiao challenges common misconceptions about palliative care.

Rather than focusing solely on end-of-life care, it encourages health professionals to think about how children can live well, reach their potential and experience meaningful childhoods for as long as possible.

That philosophy is perhaps best captured in the story of AJ, a 4 year old Auckland boy living with palliative care needs. In describing the inspiration behind Te Whare Kaiao, Gemma has spoken about the importance of seeing the child before the diagnosis. AJ’s love of music, his determination and his personality are central to who he is. His illness does not define him. His humanity does.

This perspective sits at the heart of Gemma’s work.

The Te Ārai Children’s Palliative Care research team: (from left to right) Dr Deborah Raphael, Prof Merryn Gott, Dr Gemma Aburn, Dr Ross Drake,  Dr Tess Moeke-Maxwell

It is why she continues to advocate for children, families and healthcare professionals. It is why she believes education matters.

Reflecting on her journey, Gemma describes the paediatric palliative care education project as her first postdoctoral study. The experience not only strengthened national education and clinical practice but also laid the groundwork for future research focused on achieving equitable access to care for all children and families. The team that conducted the education project continue to work together, and have just been awarded an HRC Project grant to explore whānau and family experiences of caring for a child with palliative care needs in Aotearoa. This research seeks to ensure a strong whānau voice in the implementation of a new national service for children’s palliative care.

At its core, Gemma’s story is one of partnership, between researchers and clinicians. Partnership between health services and communities. And partnership with whānau whose experience, knowledge and resilience continue to guide the way forward.