New study aims to find out who cares for the carers

Family carers’ unpaid and underpaid labour remains one of New Zealand's most overlooked social justice issues. Researchers from Te Kunenga ki Pūrehuroa Massey University are calling out to carers to come forward and share their stories.

The research seeks to understand the experiences that caregivers carry but rarely share publicly, identify unmet needs and gaps in support, and capture authentic stories that highlight both personal experiences and broader systemic issues affecting caregivers across Aotearoa New Zealand.

In a recent legal battle, the Supreme Court ruled that two parents caring full-time for their disabled adult children were, in fact, employees of the government. As such, they were entitled to the same rights and protections as other workers. According to disability advocates the decision had implications for at least 10,000 family carers across New Zealand.

Lead researcher from Massey’s Health and Ageing Research Team (HART) Dr Shanika Koreshi, says rather than use the ruling as an opportunity for meaningful reform, the government has since introduced the Disability Support Services Bill, which clarifies that the Crown is not the employer of family carers, limiting government fiscal responsibility and failing to recognise the rights and dignity of carers.

Dr Koreshi explains that this case is about more than legal definitions.

“It is about who we, as a society, value, and about whose needs and struggles are rendered invisible. Informal caregivers play an essential role in supporting people with long-term illness, disability, or frailty, often providing complex care for long hours. Their contribution is fundamental to the functioning of the health system,” Dr Koreshi says.

“Many health services assume that family, friends and communities will step in when care is needed, yet practical and emotional support for those carers remains limited and difficult to access.”

It is against this backdrop that the Health and Ageing Research Team and the Wāhi Kōrero Research Team at Massey University is undertaking new research into the lived experiences of carers in Aotearoa New Zealand.

This project uses the Wāhi Kōrero online storytelling platform to capture the lived experiences of informal caregivers. The platform enables caregivers to share their stories anonymously in written, audio, or video format in response to the prompt: “I have provided care for someone. These are the thoughts and feelings I keep to myself.”

To share your story or find out more about the research project click here.