Exciting new research study
Pae Herenga lead researchers, Dr Gemma Aburn and Dr Tess Moeke-Maxwell.
We are very pleased to have been awarded nearly $1.2 million in Health Research Council (HRC) funding to improve paediatric palliative care services for children and their families across Aotearoa. The 36-month project Pae Herenga: Informing service development of paediatric palliative care will deliver the largest study of paediatric palliative care ever undertaken in New Zealand and generate the first comprehensive national dataset capturing whānau and family experiences for both Māori and non-Māori.
The study is led by Gemma and Tess and involves the remainder of the Te Ārai Children’s Palliative Care Research Team, including Deb, Merryn and our colleagues Dr Ross Drake and Dr Maryam Pirouzi. We will be supported by Ria Earp (Ngāti Whakaue, Ngāti Pikiao), Matua Tame Hauraki, and the Te Ārai Kāhui.
The research addresses a critical need, with more than 3,000 children in Aotearoa living with life-limiting or life-threatening conditions requiring palliative care. The study centres the voices of families who are often underrepresented in health system design.
“Whānau and families hold deep knowledge about what good care looks like, especially in some of life’s most challenging moments. This research is about listening carefully to those experiences and ensuring they directly shape how services are developed in the future.” (Dr Gemma Aburn)
Deb, Merryn, Gemma, Ross and Tess from the Pae Herenga project team
Putting whānau at the centre of care
The study will take a co-creation approach, working alongside participants to develop resources that support families caring for a child with palliative care needs. Using creative arts methodologies, the team will produce accessible resources that reflect the diverse realities of families and communities. This approach recognises that care extends beyond clinical settings.
“Palliative care is not just about medical support - it is about relationships, connection, and supporting whānau in ways that honour their values and lived experiences. By co-creating resources with families, we can ensure they are meaningful, practical and grounded in what people actually need.” (Dr Tess Moeke-Maxwell).
These resources will be made available across multiple formats and used throughout all levels of paediatric palliative care.
Improving care and reducing system pressures
In addition to improving family experience, the research is expected to deliver broader system benefits. Better service design can reduce avoidable hospital admissions, shorten hospital stays, and minimise distressing or unnecessary interventions - improving outcomes for children while reducing healthcare costs. Embedding whānau perspectives into service development is key to achieving these outcomes.
“When services are aligned with the realities of families, care becomes more responsive, more effective and more sustainable,” (Dr Gemma Aburn).
Strengthening workforce capability
The findings will also inform health professional education, supporting clinicians to reflect on practice and adopt more whānau-centred approaches.
By placing whānau voices at the centre, the research aims not only to enhance care experiences, but to reshape how services are designed - ensuring they truly meet the needs of children and families now and into the future.