Brain Injury Whānau Action Project (BIWAP): Increasing the Capabilities of Families of Adults With Brain Injury to Live Their Lives in the Ways They Have Reason to Value

This PhD was prompted by my concern about the lives of families after an adult sustains a serious brain injury. We have long known that brain injury impacts families, but our supports within Aotearoa New Zealand have been focused on individuals. I was concerned that an individualistic focus caused unnecessary suffering for families and was a remediable injustice. Our systems were a particularly poor fit for Māori whānau (families), given that Māori understandings of health and well-being have a strong focus on the well-being of whānau. As a non-Māori researcher I wanted to work in a way that is ethical, effective and respectful. The Capability Approach has provided the theoretical framework for this research and was chosen because of its understanding of disability, or capability deprivation, and the focus on human rights and how people are able to live their lives in actuality. The methodology used is Māori-centred Community-Based Participatory Research. This gave me a way of working that respected Māori values and processes, focused on building solutions from the flax roots up, and is designed towards the possibility of influencing policy change. The question asked in this thesis is: How can we increase the capabilities of families of adults with serious brain injury to live their lives in the ways they have reason to value? A community-academic partnership was established with the Auckland Brain Injury Association. A number of family members (co-researchers) from South Auckland then gathered over some months to explore the situation of whānau living with brain injury, to determine action that could increase the capabilities of their own and other whānau. This work brought the co-researchers to the determination that they wanted to educate and strengthen themselves, in order to educate and strengthen others. The action project chosen was a wānanga, which brought together a wider group of whole families (including people with brain injury, children and elders), to learn from each other and from selected health professionals, at the ancestral marae of one of the co-researchers. This work, and the process of our research was evaluated by co-researchers and wānanga participants. It has resulted in many other spinoff benefits including relationship building with like-minded groups and is having a direct influence on policy. The action of the wānanga is at the same time new and not new. Wānanga are a cultural tool with a long history of use amongst Māori, yet this method of learning and support has not been researched for working with families with brain injury. To understand why this type of support and learning process had not happened earlier, the next research stage was a reflective process considering government strategies and the United Nations’ Convention on the Rights of Persons with Disabilities (CRPD). This thesis argues that in order to increase the capabilities of whānau with brain injury we need to develop Māori-centred, community-driven actions at the individual and whānau level. At the same time our government organisations need to uphold their commitments under both Te Tiriti o Waitangi and the CRPD