As a researcher on the Friendly Housemates project, I was very excited to join the team and realized early on that research ethics would be an important consideration for us. Every research study must be conducted with care for the participants. Our team recognized that because we were working with people with intellectual disabilities, considered a vulnerable population by the Tricouncil Policy Statement, the document which guides research ethics in Canada, we would need to conduct our study with special care for our participants.
What did that mean for the research team?
We consulted continuously with our community partners at Community Living Toronto (CLT) during the planning stage to be sure that the study would benefit the participants as well as future individuals and families. We got CLTs input on the how, where and what regarding data collection. They helped us develop our interview guides and we regularly meet to discuss the process as it unfolds.
Key participants in the study were people with intellectual disabilities as well as their families, and students living as housemates. We carefully considered the issue of consent: every participant has the right to have the study explained clearly and the opportunity to ask as many questions as they wanted. We planned to take as much time as needed to obtain consent and we involved family members in the consent process as needed.
Every research project has to be approved by a Research Ethics Board (REB) however, getting approval is just the start. Just because the REB approves a study, it doesn’t mean you are ‘done’ from an ethics perspective. It is the researchers’ responsibility to constantly self monitor their activities to ensure what they are doing is ethical. In this study that means seeking ongoing consent each time we re-interview our participants. It means checking to make sure the interview time and place is still convenient for them. It means being aware that the interview needs to change direction or be curtailed if necessary. We are fortunate to have a very skilled, experienced interviewer for our project. She is very sensitive to the participants’ needs and wishes during the interviews.
When the interviews are typed up we don’t include any names or identifying information to promote confidentiality. We do something called ‘member checking’, we send the transcript to the participant and ask them if we caught their reflections accurately and if there is anything they would prefer we take out?
Being mindful of ethics has been an interesting, ongoing learning experience for the research team. We invite your comments on the topic and if you are interested in the topic of ethics and research with people with intellectual disabilities, here’s a link to an excellent article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4399491/
Author – Lynda Atack