University of Auckland Clinical Psychology doctoral candidate, Ronald Chau, is calling on young people living with life-limiting health conditions to help shape a better understanding of what it means to navigate serious illness during adolescence and early adulthood.
Mr Chau is actively recruiting young people aged 16 to 24 years for a study exploring the experiences of adolescents and young adults living with palliative care needs.
The research aims to hear and amplify the voices of a group often overlooked in healthcare and research.
“Young people’s voices are often not heard, or even asked for, when decisions are being made about their care,” says Mr Chau.
“More importantly, I hope this research creates space for their voices, as their perspectives are rarely centred in research or in practice.”
Born in Hong Kong, Mr Chau immigrated to Aotearoa New Zealand with his family when he was four years old and grew up in Tāmaki Makaurau Auckland. He describes himself as Kiwi-Chinese, shaped by both cultures and guided by the values of family, connection and care.
His academic journey has taken him from undergraduate studies in psychology at the University of Otago to working in the field of neurodiversity in Hong Kong and Singapore before returning to New Zealand to train as an Educational and Developmental Psychologist.
Working alongside children, young people and families highlighted a critical gap, he says.
“I increasingly realised that young people are often the subjects of care, but not always active participants in conversations about their care,” he says.
That insight ultimately led him to doctoral research focused on young people living with conditions that may shorten their lives.
While palliative care is often associated with end-of-life services, Mr Chau says the reality is much broader.
“It’s not just about death and dying. It’s actually about what that whole process is, supporting living with serious illness,” he says.
The study will investigate the experiences of young people who inhabit a unique space within healthcare systems.
Internationally, and in New Zealand, many young people transition into adult health services when they turn 18. Yet for some, neither paediatric nor adult services fully reflect their developmental needs.
“There’s a gap,” says Mr Chau. “Young people can feel too old to belong in paediatric services and too young to feel at home in adult services.”
He hopes the findings will help clinicians and healthcare providers better understand not only the medical needs of young people receiving palliative care, but also their social, emotional and relational experiences.
The project was partly inspired by a Chinese proverb describing a white-haired person sending off a black-haired person, a phrase that captures the profound sadness families experience when a young person dies before an older generation.
For Mr Chau, avoiding difficult conversations does not make them disappear.
“Death is sad, regardless of age,” he says. “The conversation doesn’t change that experience. It might be uncomfortable, but it doesn’t remove it.”
His research is supervised by Dr Gemma Aburn, a specialist in children’s palliative care from the School of Nursing, and Professor Kerry Gibson from the School of Psychology, whose expertise in youth mental health has helped shape the project’s clinical and developmental focus.
As he prepares to begin data collection, Mr Chau hopes young people will feel empowered to share their stories and experiences.
“Ultimately, I hope this research encourages clinicians and services to listen more intentionally to young people and design care in ways that better reflect their lived realities.”
The study has received ethics approval and welcomes young people aged 16 to 24 living with palliative care needs to take part.
Interested participants, families or healthcare professionals can contact the research team directly at Ronald.Chau@auckland.ac.nz to seek more information about the study.
