Ethical key learnings from participant observation with people with communication support needs

Abstract

Despite ongoing advancement of inclusive research methodologies that allow people with disabilities to control, create and take ownership of the research process, the experiences of people with intellectual disabilities who use little or no verbal speech to communicate are underrepresented in research studies. A method with potential to facilitate their research participation is participant observation. Ethical concerns and questions, however, may intimidate or discourage researchers in using the method with people with communication support needs. In this article, I use ethnographic field notes and personal reflections about working as a participant observer with people with communication support needs. I describe and analyse three points of consideration in using the method to draw out ethical key learnings, which revolve around (1) the influence of third parties, (2) observing the person in the absence and presence of research participants, and (3) balancing views on research participants. I end the article with a discussion about the ethical key learnings and argue that participant observation can provide researchers with a considerable amount of time to become familiar with people’s communication preferences, but that they need to be committed to reflecting on and resolving the ethical tensions and questions they experience in researching with people with communication support needs.