Engaging with support workers to include people with communication needs in research is beneficial

Lutz

Deborah Lutz, MEd
The University of New South Wales (UNSW) Australia

There is a long history of excluding people with intellectual disabilities and communication needs from research. Sometimes this happens because researchers from universities do not have the time or capacity to familiarize themselves with the individual communication support that a research participant with intellectual disabilities and communication needs uses. If researchers learn to better work together with support workers that assist the person with communication needs on a regular basis and are familiar with the person's individual communication support, then people with communication needs could possibly be better supported to have more of a say in research.

What did you do in your research?
We discuss different research practices that we used in a state-government-funded evaluation of Australian disability services to include people with communication needs in observation interviews. We use a recent inclusive research framework developed by Melanie Nind to assess how, and if, our engagement with support workers in this evaluation achieved the expectations of inclusive research. We use authentic examples of working with support workers to explain the limitations and opportunities of this approach.

What did you find out?
We found that the if a trusted relationship exists between the support worker and the person with communication needs, then this can be used as a resource to include the person with disability in evaluation research. We also found that if university researchers engage with support workers, it can improve the quality of the interaction of some people with communication needs in evaluation interviews (including people who do not use spoken language). However, this depends if the support worker understands the person's right to participate in the research and if they think creatively about how to make it a meaningful opportunity for the person. Therefore the researcher needs to prepare well for working with the support worker as well as with the person with ID and communication needs.

What are the take-home messages?
Engaging with support workers is an effective approach that helps produce more ethical research and richer knowledge about people’s experience of their disability support. However, relying on the engagement with support workers and including them in the interviews has some limitations and can create ethical risks, particularly if the relationship between support worker and the person with disability is not a trusted one. Further research needs to explore ways of communicating and promoting inclusive research approaches in evaluations to people working in the disability sector as it could enhance the opportunities for inclusive research with people with ID and communication needs.

To learn more about these findings contact Deborah Lutz.

Full Journal Article
Lutz, D., Fisher, K. R., & Robinson, S. (2015). Sharing the focus: engaging with support workers to include people with communication needs in research. British Journal of Learning Disabilities.

Resources

Nind M. (2014) What is inclusive research? London, Bloomsbury Academic.

Link to the evaluation reports that informed our research:
https://www.sprc.unsw.edu.au/research/projects/supported-accommodation-evaluation-framework-saef/

Link to other useful disability research resources:
https://www.sprc.unsw.edu.au/research/areas/disability-mental-health/publications/