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

Accessible summary This article is about university researchers and support workers working together when people with disabilities need support with communication to take part in research. This is one way to help people with disabilities to do this. We talk about a project we did to help explain six different ways of working together to help people with disabilities have more of a say in research. We found that if the person has a trusting relationship with the worker, the worker can help them understand the research, help them to tell the researcher what they think about the research and remind them about what they know is important to them. Sometimes problems can happen and people do not get good support from their workers. It is the job of the researchers to make sure that people with disabilities still have a say in the research. Summary Inclusive research is an increasing expectation to value and include people\u27s 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\u27s 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