Ka puāwai ngā kōhungahunga turi: a study of the nature and impacts of early intervention for Māori deaf children and their whānau

This research investigates the early experiences of Māori deaf children, documenting whānau (family) perspectives on interactions with early intervention professionals and environmental sources of information, the effects of these on whānau perceptions of deafness, how decisions around communication and language use are arrived at, and how these affect a sense of parental competence. The features of a whānau-centred model of intervention are explored by whānau participants and the researcher in order to provide an understanding of how early intervention services could be more effective from Māori perspectives. Developing age appropriate language, communication skills and social acculturation is a synchronous process which typically occurs within the context of families. The majority of deaf children, however, are born to hearing parents and families with little experience of deaf people from which to develop a subconscious repertoire of skills with which to engage, facilitate and teach language to a deaf child. Early intervention services seek to support deaf children and their families in this process. In New Zealand a family-centred model of early intervention is accepted practice. Māori children are over-represented in deafness diagnostic statistics and their early language and social development takes place within a social context that is configured differently to the prototypical non-Māori family, that is, the whānau. Little is known or documented about the characteristics and efficacy of a family-centred model in relation to Māori deaf children and their whānau. The Māori metaphor of transformative praxis was used to frame a kaupapa Māori approach to case study research. Kete mātauranga (woven baskets of knowledge) were co-constructed between whānau participants, early intervention professionals, and the researcher, using Māori methods of qualitative data collection: kōrero-a-tinana (observations of action and behaviour), kōrero-a-waha (spoken language), kōrero-a-ringaringa (signed language), kōrero-a-tuhituhi (written language). Analysis of the data suggests that whānau perceptions of their deaf child evolve as the child moves through developmental stages and as the whānau encounters different sources of information and experiences relating to deafness. The study shows how the relevance of information, spoken, written, and signed, from early intervention professionals and observational knowledge gained from others with lived experience of deafness, deaf people and their whānau, was interpreted and weighed by participants as they interacted with their own deaf child in everyday social contexts. Participants' aspirations for their deaf children centred on a holistic perspective of wellbeing and development, the whānau providing the foundational context from which this developed. Recognising that their deaf child was situated at the borders of multiple cultural and linguistic groups, through either familial or social connection, whānau aspirations centred on the child’s active social and linguistic participation within these groups. Initial encounters with professionals focused on medical perspectives of hearing loss, positing deafness as a medical concern remedied through routine technical and medical interventions. However, as the child entered developmental stages, whereby language acquisition and the social acculturation process began, whānau started to relate to their deaf child in more social terms, and required more social and linguistic support to ensure participation in various home and educational contexts. Early intervention services were seen by some participants to constrain, or conflict with, their social-cultural aspirations for the child, through a focus on acquisition of spoken English and facilitating participation in mainstream educational contexts. Whānau expressed frustration at the compromise they endured as a consequence and wished for a model of support that engaged with whānau aspirations and relational styles more effectively. Potential features of a whānau-centred model of early intervention were composed by the researcher and whānau participants during a wānanga (forum) held as a part of the research. The features identified utilised the tradition of raranga (weaving) as a metaphor with which to frame relational and participatory components of a whānau-centred early intervention model for Māori deaf children