By Lynda Atack
One of the challenges we’ve faced during this research project is meeting one of our primary goals: capturing the perspective of our participating housemates, people with intellectual disabilities.
We are following households composed of students and people with disabilities over time, and recording their experiences as they live together. It’s relatively easy to capture the students’ perspectives (when you can pin them done in a busy week!) but more of a challenge exploring the perspective of the person with the intellectual disability.
Some of the data collection issues that we’ve struggled with are commonly cited in the literature:
-Determining if the individual wants to participate in an interview and if his/her family supports that idea.
-Determining capacity: is the individual capable, and if it is better to interview them alone or are they more comfortable with family present.
– Taking time to walk through the consent process and making sure the individual understands what they are consenting to. In this study, while the situation varies from person to person, generally we seek consent from the individual with the disability as well as someone who knows the individual well. Because this is a longitudinal study, consent is obtained with each subsequent interview.
– Adapting the interview guide as needed: what types of questions work best? We have found that open- ended questions can be daunting. This challenge has been noted in the literature; there is an excellent paper by Coons and Watson (2013) on this topic. These authors note that either/or questions can often elicit consistent responses or stimulate a response. They recommend asking structured, concrete questions as those questions might be more clear to the participant. Other issues we’ve struggled with are, what strategies should be tried when the individual is fairly non-verbal? How do we capture non-verbal communication? We have implemented the use of field notes to support the interview data.
Data analysis can also pose some challenges: how can one be sure, when analyzing the data that we are being true in our interpretation? We are using several strategies described in the literature such as taping the interviews, having two people coding, one person whom actually conducted the interview. We are doing member checks, asking participants’ families to read the transcripts and see if the interview captured their thoughts. We are interviewing all participants, the person with the disability, the student or friendly housemate, families and staff. The use of multiple sources for data collection will help to validate our results.
In short, while we are guided by experience and evidence, the realities of conducting the research in this project is a continual learning experience. We invite your comments on the topic and if you are interested in the topic of the practicalities of conducting research with people with intellectual disabilities, here’s a link to an excellent article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4399491/