TY - JOUR
T1 - Social researchers and participants with intellectual disabilities and complex communication (access) needs. Whose capacity? Whose competence?
AU - Dee-Price, Betty Jean M.
PY - 2020/8/10
Y1 - 2020/8/10
N2 - 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.
AB - 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.
KW - augmentative and alternative communication
KW - complex communication access needs
KW - ethics
KW - inclusion
KW - Intellectual disability
KW - research inclusion
UR - http://www.scopus.com/inward/record.url?scp=85089178929&partnerID=8YFLogxK
U2 - 10.1080/23297018.2020.1788418
DO - 10.1080/23297018.2020.1788418
M3 - Article
AN - SCOPUS:85089178929
SN - 2329-7018
VL - 7
SP - 132
EP - 143
JO - Research and Practice in Intellectual and Developmental Disabilities
JF - Research and Practice in Intellectual and Developmental Disabilities
IS - 2
ER -