Sharing the focus: engaging with support workers to include people with communication needs in research

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Abstract

Summary

Inclusive research is an increasing expectation to value and include people's voice in research and evaluations intended to benefit them. The active participation of people with communication support needs can be difficult due to the practical constraints of evaluations. One technique is to engage with workers who are familiar with the person, but this introduces risks, such as substituting voice and conflict of interests. We examine the effectiveness of this technique in ethnographic interviews by applying Nind's framework of core ideas in inclusive research (disrupting hierarchy; maximising participation and competence; enhancing authenticity; empowerment; accessibility, authorship and readership; and ethical considerations) to an evaluation of Australian disability services. We found that where support workers had a trusted relationship with the person, they could help them to choose to participate, consent and communicate their views. Disrespectful relationships introduced ethical risks during and after the interviews, which needed to be anticipated and safeguarded against.

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