Social researchers and participants with intellectual disabilities and complex communication (access) needs. Whose capacity? Whose competence?

Betty Jean M. Dee-Price

Research output: Contribution to journalArticlepeer-review

8 Citations (Scopus)

Abstract

Despite the evolution of inclusive research and augmentative and alternative communication, there is an ongoing absence of people with intellectual disabilities and complex communication (access) needs from sociological cohorts. In an in-depth study of 10 individuals with complex communication access needs, the involvement of three participants with intellectual disabilities was highlighted. The purpose of this article is to describe how the investigation was conceptualised, designed, and adapted to maximise the participation of adults with intellectual disabilities and complex communication access needs. Revealed are the adaptations and approaches made to the core elements of the study: communication access, research design, consent-to-research, and methods. Also described are subsequent participant insights on the topic of inclusion of people with complex communication access needs in research. The investigation contributes to an evolving body of literature on inclusive research, highlighting tensions of competence and capacity, as well as capacity-building challenges more broadly.

Original languageEnglish
Pages (from-to)132-143
Number of pages12
JournalResearch and Practice in Intellectual and Developmental Disabilities
Volume7
Issue number2
DOIs
Publication statusPublished - 10 Aug 2020

Keywords

  • augmentative and alternative communication
  • complex communication access needs
  • ethics
  • inclusion
  • Intellectual disability
  • research inclusion

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