Kōrero Pono: Understanding the experiences of Child Cancer Whānau

About

Commissioned by Te Whatu Ora, Te Toka Tumai, Starship Blood and Cancer Centre, Mana Pacific worked on this project alongside Kāhui Tautoko Consulting Ltd (lead).

This research focused on the experiences of Māori and Pacific families, exploring the cultural responsiveness of cancer services. It highlighted challenges faced by families in rural areas who must travel for treatment, aiming to centre their voices in future service developments as well. Measuring patient experiences alongside clinical outcomes provides insight into service provision and identifies areas for improvement, ultimately aiming for better health outcomes and equitable care. By focusing on these areas, this project sought to create more equitable and supportive cancer care experiences for whānau.

The research methodology honoured Te Ao Māori values and utilised a kaupapa Māori approach. There was engagement with 43 families - comprising of 22 Māori, 7 Pacific, and 14 non-Māori/non-Pacific participants - about their cancer journeys. Key aims were to assess: 

1. Equity in care and experiences of all children and their families.
2. Family experiences of diagnosis, treatment, travel, and support services.
3. Positive aspects fo care received/
4. Barriers families faced during their cancer journey.
5. Opportunities for enhancing service models and support reflecting the needs of children and their families.

This research used the Te Whare Tapa Whā framework to guide both analysis and researcher conduct, emphasising the importance of whānau voices. The overarching goal was to enhance the experiences and pathways of care for children with cancer and their whānau, ensuring fair treatment for all.

Insight and Impact

Several opportunities for improvement emerged from family discussions that could strengthen service models and address cultural and psychosocial needs: 

• Advocate for a larger Māori and Pacific workforce in oncology.
• Provide cultural training for health practitioners about whānau identities and needs.
• Introduce cultural support staff early in the family's journey.
• Review trainig for support services to improve communication styles.
• Offer mental health services for parents and siblings.
• Facilitate better support for families navigating care and entitlements.

Further recommendations include reviewing travel allowances, addressing parking challenges, improving communication processes, and ensuring health professionals honouring the diverse beliefs and practices of whānau and integrate into best practice for health practitioners.