Abstract
Background
This thesis presents a focused qualitative inquiry into the experiences of Tongan families in Aotearoa New Zealand who are raising children with neurodevelopmental disabilities (NDD), such as Autism and Cerebral Palsy. Pacific families, access health, education, and disability support services less than any other ethnicity and far less than the proportion of Pacific children with NDD. Reasons for this are expected to be multi-factorial based on research with other health populations, however, the initial experiences of these caregivers’ seeking of support has not been explored, particularly of those of Tongan caregivers who hold culturally distinct traditions, circumstances and worldviews from many other Pacific communities. Their voices could provide important insights into the interface between Tongan families and formal support services, that could inform future research and policy development.
Aim
The purpose of this study is to explore the Tongan families of children with NDD experiences with disability support systems in Aotearoa.
Methods
The Kakala research framework guided provided a Pacific-informed and culturally grounded approach to research design, from participant recruitment to data interpretation. Interviews were sought with caregivers of Tongan children with NDD. Talanoa was used as a relational and dialogic method in creating a space for participants to reflect on their experiences in respectful, open-ended, and culturally safe ways.
Findings
Four caregivers (3 mothers and one sister) participated in four interviews through online Zoom calls. Three key themes and eight subthemes emerged from the data, illustrated through the metaphor of navigating a Kalia (traditional Tongan canoe) across shifting seas. Three overarching themes included: (1) Boarding the Kalia, (2) Guided by Ancestral Ways and (3) Finding a Way Through the Waves. The first overarching theme, Boarding the Kalia included subthemes of Charting Unknown Water, Setting Sail Without a Compass, and Working Together with Experienced Navigators. Theme two Guided by Ancestral Ways, comprising Guided Through Faith and Beliefs and Anchored by Stigma; and theme three Finding a Way Through the Waves, which includes The Weight of the Paddle, Tears in the Tides, and Kalia of Hope.
Conclusion
Findings revealed how families utilise cultural interpretations of their children’s symptoms delaying them in seeking medical advice and how deeply embedded beliefs of NDD influence their engagement with services. It also revealed how families receive racially bias support from services such as complex information expected for them to make sense of on their own, or advice that was not culturally informed in their own values that resonated with anga faka-Tonga, Tongan way of living.