Participatory Data Analysis Alongside Co‐researchers who have Down Syndrome

Abstract

This work is important as it shows the abilities of some people with Down syndrome in data analysis work. The co-researchers were included in research that is about themselves and other people with intellectual disabilities.

Co‐research with adults with intellectual disability: A systematic review

“…One was a feasibility study testing training for co‐researchers (Perry & Felce, ) while the remaining 12 were case reports on the experience of co‐research. Of these, three studies were based on participatory action research (PAR) (Conder, Milner, & Mirfin‐Veitch, ; Kramer, Kramer, Garcia‐Iriarte, & Hammel, ; Stevenson, ). PAR is defined as inquiry and action based on questions which are relevant to co‐researchers (Reason & Bradbury, ) and appears to be one of the most often used design in PPI with adults with intellectual disability.…”

“…The production of research also varied substantially, from being mostly user‐led (March, Steingold, Justice, & Mitchell, ), to being equally shared between the academic and co‐researchers (Williams & Simons, ). In one instance, however, the academic researcher acted as the lead and elements of co‐research were only present at certain stages of the research process (Stevenson, ). This was also reflected in the authorship of the materials for dissemination.…”

Evaluating a Research Training Programme for People with Intellectual Disabilities Participating in Inclusive Research: The Views of Participants

“…), making questionnaires (Salmon et al . ) and doing data analysis (Stevenson ); however, these were not covered on our programme.…”

The added value of inclusive research

“…Furthermore, the authors argue that co‐researchers add value through bringing something unique to the research enterprise. This is in contrast to the approach adopted by numerous teams, to seek to “teach” co‐researchers with intellectual disabilities to become “real researchers,” able to understand the literature, analyse data and select appropriate methodologies (e.g., Dias et al., ; Kramer, Kramer, García‐Iriarte, & Hammel, ; Stevenson, ). However, the authors propose in this article that the value of inclusive research is that co‐researchers bring something different and unique which brings added value to a research project.…”