Preparing for inclusive consultation, research and policy development: insights from the field of Deafblindness

Alana Roy, Keith McVilly, Beth Crisp


There is a paucity of research and guidance on good practice for engaging with people who are Deafblind in policy development and the co-design of services and service systems. Although there are a range of inclusive research methodologies, such as the World Café, Deafblind people are yet to be engaged authentically and effectively in these conversations. To address this issue, and as part of a program of research to investigate and test good practice in this field, we analysed data from semi-structured interviews with eight Deafblindness professionals using inductive thematic analysis. Six themes emerged from the interview data. These were: (1) acknowledging the unique Deafblind world view; (2) the interplay of vulnerability and trusting relationships; (3) the importance of specialist knowledge, skills, and cultural sensitivities; (4) power to the people - addressing power imbalances inherent in consultation processes; (5) same but different – the Deafblind experience of being a culturally and linguistically diverse (CALD) community, and; (6) a challenge that must be met – the imperative to involve people who are Deafblind in research and policy development. If people who are Deafblind are to be engaged in research and policy development, there are a number of guiding principles that need to be considered and practical actions to be taken. These principles include employing a culturally sensitive and trusted research team to spend time working with Deafblind people to help prepare and educate them for research and consultation processes. In so doing, people with lived experiences and professionals in the field can build the trust, knowledge and skills needed to enable authentic co-design and co-production of policy and practice.

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