Oranga Tamariki is working to improve disability data and evidence. This literature review responds to the Oranga Tamariki goal of improving disability data collection and use.
The literature review was commissioned by Oranga Tamariki and conducted by the Donald Beasley Institute using an integrative literature review methodology. It explores 3 key questions regarding existing models and frameworks of data collection, the application of models and frameworks within the context of Aotearoa New Zealand, and the development of a data collection framework for Oranga Tamariki.
The aim of this project was to answer the following research questions posed by Oranga Tamariki:
- What existing frameworks can inform Oranga Tamariki data collection processes relating to disability and impairment?
- How do existing frameworks hold up in the socio-political context of Aotearoa New Zealand?
- What does a social-, rights- and Te Tiriti o Waitangi-based approach to disability data collection look like in the context of Oranga Tamariki engagement with tamariki, rangatahi and whānau?
An integrative literature review was conducted to address these questions, with particular emphasis on the identification of existing frameworks and methods for data collection in Aotearoa New Zealand and abroad. The integrative literature review also sought to identify where data collection practices were falling short for disabled
tamariki and rangatahi.
Integrative literature reviews enable the use of theoretical and empirical literature inclusive of ‘grey’ literature to provide “a more comprehensive understanding of a particular phenomenon or healthcare problem” (Whittemore & Knafl, 2005, p. 546).
The inclusion of grey literature involves the use of information produced by academia, governments, non-governmental organisations, service providers, businesses, and industry (Lawrence, 2012). An additional feature of an integrative review includes the potential to inform evidence-based practice (EBP) (Toronto, 2020; Whittemore & Knafl, 2005).
As part of the integrative review process, a list of foundational documents was formulated consisting of relevant treaties, conventions, strategies, policies, and documents that could inform the key project questions. Twenty-two foundational documents and categories were identified by the research team. Subsequently, a search of the literature pertinent to each of the foundational documents (with specific reference to disability data and evidence) identified further frameworks, and additional considerations and shortfalls of the existing guidance. Of this search, 88 sources were identified and used to inform this review. Summaries of the foundational documents are presented in Part A of this report.
Relevant data from the identified literature was then extracted and analysed according to key components of understanding data collection. These included the why, what, when, who, and how of collecting disability data, as presented in Part B of this report. This process allowed the overarching research questions to be explored and addressed as presented in this report.
Finally, in Part C of this report the findings of the literature review are applied to hypothetical case studies. Within these cases studies, a Tiriti o Waitangi- and rightsbased framework for data collection is applied in the context of: tamariki with existing and diagnosed disabilities; tamariki with invisible or undiagnosed disabilities; and disabled parents who engage with Oranga Tamariki.
Disability data and evidence is crucial in upholding the human rights of tamariki and rangatahi. It can be translated into meaningful insights that inform and transform policy and practice. And it helps to honour Te Tiriti o Waitangi, monitor human rights progress, prevent abuse, and advance current models of thinking about disability.
The literature review findings identify 4 key values consistently highlighted in the literature: disability data collection is person-centred, strength-based, guided by kaupapa Māori principles, and disability data is transformative. A disability data framework conceptualised on this basis places tāngata whaikaha at the centre, surrounded by intersections of Te Titiri o Waitangi, the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and the New Zealand Disability Strategy (NZDS).
The literature review also demonstrates the importance of carefully considering the ethics of knowledge production when collecting disability data and evidence. It reaffirms that when we listen to tamariki whaikaha and their whānau, meaningful knowledge is gained. This information will frame and inform subsequent disability work.