Every voice counts: exploring communication accessible research methods

Abstract

Despite a proliferation of qualitative research methods and the advancement of augmentative and alternative communication (AAC), people with Complex Communication (Access) Needs (CCAN) are often absent from sociological study cohorts. Proxy interviewing is common but it leaves viewpoints to be shaped by others. Herein the purpose of the study was to develop and test new methods of data collection that would improve access to research participation for people with CCAN. This article reports on the development, implementation and evaluation findings of four data collection techniques. These methods, ‘theory generated photo elicitation’ ‘adapted image selection’ ‘participant sensory selection’ and ‘sensory ethnography’ were tested and implemented in a study of people with CCAN. The study contributes to the knowledge of communication accessible research participation with applicable to disability-based qualitative research across multiple fields.

Points of interest

• Due to a range of barriers, such as gaps in awareness and research guidelines, people with communication disability are grossly underrepresented in qualitative study cohorts.

• In this investigation, normative notions of communication competence were challenged. This included the term complex communication needs often used to describe someone who is without the use of speech. However, based on the evidence of communication access as being just as significant as other forms such as ramps and curb cuts, the phrase complex communication ‘access’ needs (CCAN) was used to propel the study in a social model direction.

• Drawing upon experimental research, the study explored, adapted and tested a range of methods. These were combined with various tools and devices used to support communication and were aligned with investigative themes.

• Photographs of hands in various postures, reflective of quality of life themes were particularly useful in discovering meaning from participants, as was the adaptation of Talking Mats© for research purposes.

• All participants, including a person with profound intellectual disability, participated in this study, offering rich insights into ‘what works’ when conducting interviews with people with CCAN.

Keywords:

• complex communication needs
• communication access
• augmentative and alternative communication
• qualitatitve research methods
• ethnography

Acknowledgements

Heartfelt gratitude is extended to the participants of this research for their generosity, patience and enthusiasm for the study. Thank you to Associate Professor Kathy Arthurson and Associate Professor Lorna Hallahan from Flinders University for your wisdom and humanity and to the Southgate Institute for Health, Society and Equity, Flinders University. Finally, gratitude is extended to Max Saul – the best of teachers.

Disclosure statement

The author has no declaration of interest to report.