Flourishing together: research protocol for developing methods to better include disabled people’s knowledge in health policy development

One specific health-related issue that dominates the concerns of people experiencing disability is that of kāinga [57]. Kāinga encapsulates aspects of both house and home – including a sense of place and community, where one’s collective identity is lived out. Therefore, this policy exemplar is interested in the ability of tāngata whaikaha Māori and disabled people to access suitable housing and their ability to create a home that meets their needs and aspirations [58, 59]. The focus on kāinga as an exemplar emerged from discussions with disabled people and policy planners who highlighted kāinga as a priority for clear policy direction within NZ. Disabled people frequently experience the compounding effects of limited incomes and low levels of paid employment, making them especially vulnerable to poor housing outcomes [6, 7, 60]. Housing as a social determinant of health is well established [61]. Additionally, the NZ government has conceived their role in providing kāinga, ensuring the ‘quality, accessibility, size, and features of our homes support people and families to live healthy, successful lives’ [62].

However, despite clear evidence linking the physical attributes of housing to health [61, 63], the mechanisms by which housing contributes to health outcomes are complex [64]. There is growing theoretical and empirical evidence linking the less tangible aspects of housing (‘the psychosocial benefits of home’) to wellbeing [64, 65]. Therefore, there is a need to consider attributes of houses beyond being physically accessible, warm, safe and affordable, to also include people’s accessibility to homes within communities that allow autonomy, the development of self-identity, socialisation, and status [65, 66].

This study uses participatory co-production methods [3, 67, 68] within a realist methodological approach [69]. Realist methods unpack the ‘black box’ of complex programmes and policies by developing theoretically-based understandings of what works for who, in which contexts, to what extent, and how [69]. Co-production methods [3, 67, 68] will collaboratively generate knowledge in partnership with people with lived experience, opening dialogue for new ways of thinking and potentially challenging dominant discourses within policy planning praxis. Realist methods are advocated to better support policy development [70], and their use alongside participatory approaches is, for example, demonstrated by Langley and colleagues [3, 68]. The University of Otago Human Ethics Committee (Health) has provided ethical approval for this research [H21/099].

Table 1 presents the results of a desktop exercise considering the range of theories and approaches underpinning participatory co-production methods within the context of disability and housing policy. The purpose was to identify potential explanations that might be observed and refined further by the research. Constructing this table follows the programme theory building stage characterising the start of any realist research approach [71]. We distinguished between macro-, meso- and micro-system levels and explanations for: (1) how equitable health-related housing and home policies are expected to emerge from the inclusion of the diverse experiences of disabled people; (2) how co-production works; and (3) the value of different contexts with respect to housing and home for different individuals. These initial programme theories will be used to examine and synthesise the diverse evidence collected in the research phases outlined below.

The four-phase research programme (Fig. 1) will be conducted within NZ. In Phase 1, co-design theory-building workshops with tāngata whaikaha Māori and disabled people (n = 20) will postulate theories about how housing works (or not), for whom, and in what circumstances to improve health-related outcomes. In Phase 2, qualitative survey responses (n = 200) gathered from disabled people across NZ will explore contexts and resources (i.e., individual, social and environmental) that support them to access and maintain kāinga, meeting their needs and aspirations. In Phase 3, a realist review with embedded co-production workshops with tāngata whaikaha Māori and disabled people will synthesise evidence and generate knowledge to inform the development of equitable housing policy. Finally, in Phase 4, data from all phases will be synthesised to develop two key research outputs for dissemination: (1) housing policy recommendations and (2) the articulation of innovative co-production methods and tools that empower disabled people to create, synthesise and articulate knowledge to planners in other policy areas within NZ.

We will include tāngata whaikaha Māori and disabled people (and their support person or whānau) aged over 18 years of age, with at least one impairment of body structure or function that results in an experience of disability (self-identified) who can communicate (in person or online) with or without the support of a communication device or support person. We are not including disabled people with a mental health condition as the primary health condition contributing to their experience of disability.

There is debate regarding what disability is and, depending on the definition, who qualifies as experiencing disability [72, 73]. People experiencing disability and disability advocates argue strongly that disability is not a ‘problem’ located within a person's body. Instead, it occurs when personal and environmental factors restrict the opportunities of people with health impairments or conditions [74]. We have kept our definition broad (i.e. people experiencing disability) and prioritised the ability of any person with health-related impairments to self-identify as experiencing disability. Historically, research limiting participation by health conditions has resulted in the ‘usual suspects’ taking part, often excluding people with less common conditions [46]. Self-identification ensures we do not endorse the non-disabled discourses of what is (or is not) the voice of disabled. However, we acknowledge that, in keeping the inclusion criteria broad, the needs and aspirations of disabled people within this research will be varied. Nevertheless, realist research approaches allow us to explicitly unpack nuance and diversity of experience.

Accessibility is a key consideration across all phases, with careful consideration given to how methods are adapted to meet a range of participants' accessibility needs. As part of Phase 1 and in qualitative survey development in Phase 2, we will explore ways inclusion can be achieved for diverse participants, developing resources and tools to facilitate full participation. Throughout, we will offer alternative formats for accessing information (e.g. easy read, large print, audio) and responding (e.g. verbal, written, online, in-person, proxy) in line with best practice [75] to support participation and the full and nuanced expression of people’s experiences. For Phases 1 and 3, we have opted for nationwide recruitment for the disabled person co-production team to ensure broader representation, especially around kāinga experiences. The qualitative survey (Phase 2) also provides accessibility and participatory advantages affording greater control, less burden and more flexibility for participants [76].

The project is conceptualised to improve health outcomes for Māori explicitly – directly in relation to housing policies and longer term, by ensuring tāngata whaikaha Māori can fully partner and participate in the planning of other health-related policies. We are responding to demonstrated Māori health outcome inequity compared to non-Māori, with compounding inequities for those who experience disability [25]. Concerning kāinga, the legacy of ongoing colonisation forcing urbanisation and the loss of land [77] means that tāngata whaikaha Māori are disproportionately vulnerable to housing issues. This is further compounded for disabled Māori, whose housing vulnerability is more significant than for either non-disabled or non-Māori [25, 78]. This research integrates the principles of Te Ara Tika [79] and Kaupapa Māori [80] within the design. These frameworks provide guiding principles for engaging in respectful research with Māori, including ensuring that engagement, relationship building and shared power in each stage of the research process occurs—from conceptualisation through to dissemination of findings—to ensure the research is culturally safe, relevant, and of benefit, to Māori communities [79]. We have engaged in whakawhanaungatanga over two years, in discussion with Māori agencies and tāngata whaikaha, to co-design the research aims and methods. The Māori researchers have extensive experience working in community, academic and social enterprise settings – focused on supporting health and wellbeing. As such, they retain strong relationships with a wide network of Māori leaders and organisations and will support the translation and utilisation of findings within Māori health, disability and advocacy contexts.

As overviewed in Fig. 2, three groupings will contribute to the creation, synthesis, articulation, and dissemination of new knowledge across all phases of the research project: (1) two advisory groupings, (2) tāngata whaikaha Māori and disabled person’s co-production team, and (3) the core research team. The core research team is intentionally diverse in experience and knowledge, including Māori [CG, TAMA, KS]; people who experience disability [CG and AB]; co-production and co-design [RM, JN, NK, AB]; realist [RM, LM, KS, NK, JHS]; and policy research expertise [LM, KS]. Across the project's life, the two advisory groupings related to (1) co-production and policy and (2) kāinga and disability, will provide accountability and ethical oversight and offer advice regarding research applicability and relevance to NZ health, disability and social service contexts.