See the child, not the diagnosis

2026-03-16 - 16:07

Comment: Last month I sat on the floor of a bright Auckland lounge while three‐year‐old Aj (Adrian‐Jade) made his preferences known – loudly and joyfully, with the confidence of a child who knew what he wanted. He wanted music. He wanted the piano. He wanted to show us that even with high and complex needs after a hypoxic brain injury as an infant, he is first and foremost a child who loves sound, connection, and play. His nan, Davina Collins, is his primary caregiver. She told us how one life‐changing moment reshaped not only Aj’s future, but the life of every person who loves him. And she reminds us, gently but firmly, that the system works best when it remembers to “see the child before the diagnosis”. Aj and Davina are part of the whānau who helped us co‐design Te Whare Kaiao – a new, Indigenous framework for children’s palliative care. It shifts attention away from “end‐of‐life” thinking and towards living well and reaching potential, however long that may be. This is important. The term ‘palliative care’ triggers a reflex association with dying. For children and their whānau, that definition can be devastating. It can delay support, shut down hope, and reduce care to tasks to do, rather than building and focusing on relationships. Te Whare Kaiao reframes palliative care as a collaborative, values‐led approach that keeps the child and childhood at the centre: routines, siblings, school, music, the outdoors, and the small daily joys that build identity and belonging. In Aj’s case, that means a home that truly works for him – one that supports daily care, communication, therapy and, yes, piano time. Te Whare Kaiao was built with whānau, for whānau. We invited Davina to join our research group as a lived‐experience expert because the deepest expertise often arrives through love, vigilance and the 24/7 work of care. During clinic visits, health professionals sometimes call her “Dr Davina” – a title worn half in jest, entirely in respect. She and other whānau have helped us translate specialist language into everyday words and have kept our focus on what matters: ensuring children can flourish, and that whānau and carers feel skilled, connected, and seen. Te Whare Kaiao is getting international attention – last November, our presentation of the framework was awarded best oral abstract at the fourth International Conference on Children’s Palliative Care in Manila. But our priority is here, with whānau in Aotearoa. The framework was co‐developed with my colleague Dr Tess Moeke‐Maxwell. Our team includes Dr Deborah Raphael (senior lecturer, School of Nursing), Dr Ross Drake (paediatric palliative care and pain specialist, Queensland Children’s Hospital), and Professor Merryn Gott (professor of health sciences, School of Nursing). We’re backed by a wider network of nurses, doctors, therapists and community organisations who know that paediatric palliative care is among the most challenging spaces in health – and that, precisely for that reason, it must also be among the most compassionate and coherent. The framework is adapted from Sir Mason Durie’s Te Whare Tapa Whā. It stands on the same four pou – taha wairua (spiritual), taha hinengaro (mental and emotional), taha tinana (physical), and taha whānau (family and social wellbeing) – and extends them for the unique realities of children with serious illness. We are now seeking funding partners, such as philanthropic organisations, iwi and Pacific collectives to help us create practical, plain‐language resources (starting with brochures ) so families can access Te Whare Kaiao nationally, and have them in their kitchens and clinic rooms, not just in academic journals or conference halls. What would the resources do? Show families where to start: what palliative care is (and isn’t), how to ask for help, and how to plan care that reflects their values. Offer everyday tools: checklists for appointments and hospital bags; questions to ask; ways to record goals that matter to the child (sleep, comfort, playground time, catching up with cousins). Name the four pou in child‐friendly language, with examples families can adapt. Support communication between whānau and clinicians, so everyone walks in the same direction. Honour culture: space for karakia, waiata, talanoa and the strands of belonging that give strength across long journeys. These are not “nice‐to‐haves”. They are essential and protective. When families are under pressure – unfamiliar wards, new equipment, sleep deprivation, complex medication schedules – clarity is a form of care. A short, well‐designed brochure can reduce anxiety, prevent errors and give carers back precious time and attention for their child. Te Whare Kaiao also addresses something deeper: the dignity of the child. Davina recently co‐authored a short story about Aj that asks health professionals to “meet the child first, to learn the personhood behind the condition”. That request isn’t sentimental; it is a clinical insight. When clinicians see the person, not just the problem, they communicate differently, notice more and co‐create better plans. That is what culturally grounded, strengths‐based practice looks like at eye level. Funding support would help us put the framework into the hands of thousands of caregivers who are navigating hospital corridors, home oxygen, feeding pumps, sleepless nights, and the fierce hope that their child will be known and loved as themselves. That is what Te Whare Kaiao promises: not a cure, but a lighted path, built from evidence and humanity, which keeps the child in view. When I think back to Aj on the lounge floor, I hear his voice rising over the piano – insistent, funny, present. I think of Davina’s steady hands and encyclopaedic knowledge of her mokopuna; of his mum, Angel‐Lyla, celebrating his progress and cheering him on; of our team learning every time we sit in that room. This is the point of Te Whare Kaiao. It helps professionals do better. It helps systems move with whānau rather than against them. And it helps children like Aj live well, on their terms, for as long as they are with us, and seen for who they are: a taonga, not a diagnosis.