Seeing the child, not the diagnosis: Indigenous framework supporting whānau

A new Indigenous framework co-designed by Waipapa Taumata Rau, University of Auckland researchers aims to reshape how children’s palliative care is delivered in Aotearoa.

Te Whare Kaiao - the whare that is alive or the house of the living organism, was developed by paediatric palliative care nurse specialist and Senior Lecturer, Dr Gemma Aburn and Senior Research Fellow Dr Tess Moeke-Maxwell, in partnership with health professionals, whānau experts and kaumātua representatives from Te Ārai Kāhui.

Adapted from Sir Mason Durie’s Te Whare Tapa Whā model – Te Whare Kaiao reframes palliative care away from an end-of-life focus and towards supporting children to live fully and reach their potential, for however long that may be.

Aj’s story

For families, the framework reflects lived experience – including that of an Auckland whānau caring for three-year-old Aj (Adrian-Jade).

In a bright Auckland living room, Aj makes his preferences known – loudly. He has a big personality, a love of music and a particular interest in the piano. During a recent occupational therapy appointment, he worked hard – vocal and determined – with a kind of presence that fills the room.

Aj is living with high and complex needs and medical fragility, following a hypoxic brain injury sustained as an infant.

His grandmother Davina Collins is his primary caregiver; she describes how one life-changing event reshaped not only Aj’s future, but the lives of everyone around him.

“I always wanted to be a nurse, but I didn’t know it would be on a day-to-day basis with my grandson. I don’t know anything else now – my life is all about Aj.”

Davina says the support from the palliative care team has been transformative – not simply because of the information provided, but how that information was offered: with respect, relationship and a steady focus on Aj as a person.

“Without Gemma, Ross and the paediatric healthcare team, I wouldn’t be where I am today. Aj wouldn’t be where he is today. They have been so supportive.”

Grounded in holistic Māori concepts of well-being, Te Whare Kaiao draws on the four dimensions of Te Whare Tapa Whā – taha wairua (spiritual), taha hinengaro (mental and emotional), taha tinana (physical) and taha whānau (family and social wellbeing) – and extends this thinking for the unique journey of children with serious illness.

Dr Aburn says the framework responds to a widespread misunderstanding: many people hear ‘palliative care’ and assume it only means end-of-life. Te Whare Kaiao turns that thinking on its head, shifts the focus to supporting children to live life as fully as possible.

Lived experience expertise

Dr Aburn first met Aj following his initial accident. She noted Davina’s deep interest in improving how care is delivered for children needing palliative support and invited her to join the research group as a lived-experience expert. The team includes University of Auckland’s Dr Deborah Raphael (Senior Lecturer, School of Nursing University of Auckland), Dr Ross Drake (Paediatric Palliative Care and Pain Specialist, Queensland Children’s Hospital) and Professor Merryn Gott (Professor of Health Sciences, School of Nursing University of Auckland).

“It has been fantastic having Davina’s input – knowing that this work means something for children and can contribute to their care over time,” says Dr Aburn.

Davina says joining the research team has been invaluable, creating meaning and purpose from the experience her whānau have lived through since Aj’s accident.

“I have to be open-minded in everything I go through in this journey with Aj. It’s been a real experience… every day you are learning so much.”

That’s meant health professionals sometimes referring to her as ‘Dr Davina’ during Aj’s visits to the doctor, given the expertise she’s acquired during the past few years.

Te Whare Kaiao a culturally grounded framework

“Paediatric palliative care is one of the most challenging areas of health,” says Dr Moeke-Maxwell. “Te Whare Kaiao responds to this need by offering a framework that supports children to live fully and reach their potential.” It can inform clinician education and policy and help whānau access support in everyday language.

That support has been practical for Aj’s whānau. After relocating within Auckland, the family is in a home that better meets Aj’s high and complex needs – an environment that supports daily routines, care needs and the small joys that make childhood, childhood.

Despite Aj’s long hospital stays and wrap-around support vital for his well-being, his mother Angel-Lyla Collins is optimistic about how her son is doing.

“He’s doing really good, he’s got a big personality like his koro… our main goal is walking – we want him to walk,” she says, laughing at how big he’s getting.

She’s eager to develop Aj’s communication skills, to better understand her son.

A short story written by Davina (with support from Aburn) asks health professionals to “meet the child first, to learn the personhood behind the condition” and to understand how that approach can improve the level of care provided.

Help needed to create resources for impacted whānau

Te Whare Kaiao has already attracted international interest, with Aburn and Moeke-Maxwell receiving the ‘Best oral abstract presentation’ award last year in November, at the 4th International Conference on Children’s Palliative Care in Manila.

However, the researchers say the priority remains closer to home: ensuring whānau can access the framework in meaningful, everyday ways – so families caring for children with serious illness feel resourced rather than alone.

“We want brochures so families can access the framework in everyday language. Whānau will feel confident caring for their children at home, especially when they know what support is available.”

Funding is needed to develop, print and distribute these resources. The researchers welcome support from any organisation eager to back the mahi and help improve support for children with serious illness and their whānau.