NZ Funds $1.2M Study Led by Families for Sick Children

When children face life-limiting conditions, their families become experts in what good care truly looks like. Now, New Zealand researchers are putting that wisdom at the center of a groundbreaking $1.2 million study that will reshape pediatric palliative care across the country.

The University of Auckland project, called Pae Herenga, will spend three years listening to families caring for seriously ill children. It's the largest study of its kind ever conducted in New Zealand, and it's using an approach that flips traditional research on its head: families aren't just participants, they're co-creators.

Dr. Gemma Aburn, who leads the project alongside Dr. Tess Moeke-Maxwell, says families hold knowledge that hospitals and clinics often miss. "Whānau and families hold deep knowledge about what good care looks like, especially in some of life's most challenging moments," she explained.

The research will create New Zealand's first comprehensive national dataset capturing family experiences, including both Māori and non-Māori perspectives. With more than 3,000 Kiwi children currently living with conditions requiring palliative care, understanding what families actually need has never been more urgent.

The team will use creative arts methods to develop practical resources that reflect real family experiences. These tools will be available in multiple formats and used across all levels of care, from hospitals to home support.

The Ripple Effect

The benefits extend far beyond individual families. When care services align with what families truly need, children avoid unnecessary hospital stays and distressing interventions. Better design means better outcomes for kids and lower healthcare costs for everyone.

The resources created through this partnership will also train health professionals in more family-centered approaches. Dr. Moeke-Maxwell points out that clinicians genuinely want to provide the best care, and hearing directly from families strengthens their ability to do so.

The project includes cultural guidance from Te Ārai Kāhui, ensuring services honor the values and lived experiences of diverse communities. "Palliative care is not just about medical support. It is about relationships, connection, and supporting whānau in ways that honour their values," Dr. Moeke-Maxwell said.

By placing families at the research table instead of just in the waiting room, New Zealand is building a more compassionate system from the ground up.