Ethics in quasi‐experimental research on people with severe learning disabilities: dilemmas and compromises

Abstract

SummaryThe present paper follows up the theme of research ethics that has been discussed in the British Journal of Learning Disabilities in recent years. We join the debate in the capacity of people involved in doing research on, rather than with, people with learning disabilities. We focus on our own quasi-experimental study evaluating the Intensive Interaction approach for pupils who are preverbal. We question our own practice, and illustrate some of the dilemmas which we have faced in our research and some of the compromises which we have reached.

The Effectiveness of Intensive Interaction, A Systematic Literature Review

“…There may be several reasons for this, not least the difficulty in conducting good quality, methodologically and ethically sound research with people with intellectual disabilities. Such difficulties are discussed in Kellett & Nind's paper (); this highlights issues around research design, informed consent, duration of baseline, tools of measurement and data ownership. People who are unable to advocate for themselves need stringent ethical frameworks to ensure their needs remain paramount.…”

Conceptualizing Inclusive Research with People with Intellectual Disability

“…Importantly, it must be recognized that inclusive research is not a panacea, and cannot be the universal remedy for including perspectives of people with intellectual disability, or for the generation of know‐ledge about their lives, policy or services they use. Too great an emphasis on inclusive research by funding bodies carries with it ‘the danger of omission in research of those with the greatest disabilities’ (Kellett & Nind , p. 51). Not all research lends itself to an inclusive approach, most participants are people with mild intellectual impairment and not ‘everyone with intellectual disability is able or willing to be involved’ (Ward & Simons , p. 131).…”

14. Methodological challenges

“…Knox, Mok and Parementer (2000) used a network of advocates and Kellett and Nind (2001), in addressing research on (not with) people with profound impairments, used a network of people round the participants -people who understood them, 'cared about them, knew when they were unhappy, distressed or uncomfortable' (p.53). It is often family members and advocates who can best advise on the individualised, sometimes idiosyncratic communication necessary to the interaction.…”