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Capturing Important Voices

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/

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Tips on Building Community

In a big city like Toronto, you would think that building community can be a challenge. Neighbours often rush by one another on their way to their jobs, to complete household tasks, and to meet other friends and family. Sometimes, even in this city filled with millions of people, folks can get lost in the crowd, never really establishing their place in their communities.  And yet, building community happens all around us, all the time: folks saying hello, taking the time to get to know one another, helping one another, and building bonds. Sometimes it can feel challenging to truly enter your community, even if you have been living there for years. If you are experiencing trouble integrating into your community, here are some tips that may help:

  1. Be present

The first step to building a community is simply to get out there, even if it feels scary: Start taking walks around your neighbourhood, stopping in at local shops along the way, seeing who is there.  You can’t build friendships if you don’t meet people, right?

  1. Establish a routine

One of the easiest and best ways to establish relationships is to establish a routine. If you’re already wandering around your neighbourhood and being present, find some places that you like where you can stop in regularly, like coffee shops, or comic book stores. Showing up to the same place over and over again will mean that you become familiar to the other folks who are there, and they become familiar to you. Eventually it’ll be easier to start a conversation with the lady who sits in the corner at 2:00 on Tuesday at your local Tim Horton’s, because you will have seen each other repeatedly. What’s her favourite doughnut flavour? Don’t know? Why not find out?

  1. Be a good neighbor

Being a good and present neighbour is a great way to build community. See a neighbour struggling to bring the garbage out? Ask to help, if you can! See someone who looks like they’re having a bad day? Smile and say hello…being friendly when you can does more than you think.

  1. Hold a valued social role

A great way to get involved with your community is by holding an important role. This can be in the form of paid positions – mail carrier, barista, shop owner, or it can be in a volunteer position – gardener, volunteer with a community arts organization, etc etc. By having a role that people can see and relate to, it opens up the possibility to chat more and get to know one another. If you’re outside gardening all the time, it’s highly likely that your neighbour will at some point come over and ask whether their daisies should be in the sun or in shade.

When it comes to building community, it’s little steps like this that make all the difference.

Have any other ideas as to how to build community? Let us know on twitter at @HousematesON

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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

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Last year, one of the students participating in the Friendly Housemates project was in my office to talk about an assignment from one of her courses. I asked her, generally, how things were going. My intention was not to check up on her, but to let her know that I was interested in her general welfare. She told me a story about her Friendly Housemates experience.
As a college student and a Friendly Housemate she said that she had to take a long bus ride to get to the campus and back home. One day, on the way home, the winter weather was very stormy and she was
feeling tired. She was happy to be going home but drained of energy. The bus was crowded and hot. As she got to her shared townhome, she noticed that the front sidewalk to the door had been shoveled. It was still snowing and blowing. Her roommate met her on the sidewalk and helped her to get into their home. He was worried about her because the weather was bad, she was late getting home and he didn’t want her to slip. This small, intimate experience typifies the value of sharing a home with a person who has an intellectual disability. When we share a home and a relationship with a person, we come into intimate contact with them and that intimacy is the essence of who we are as humans. People who have intellectual disabilities have made many gains in recent years: living in communities, shopping and enjoying what communities offer, participating in education and employment, determining what their lives will be like and enjoying their families.

Recently, a family support worker told me that young people who have intellectual disabilities have a very good sense of what they want out of life and what they are missing. She said that they want the same things as their sisters and brothers do: to enter post-secondary education, to move out of the house on their own, to become independent and enter the world of work. In a careful way, the Friendly Housemates can offer a sliver of that dream and a step to independence. One of the most challenging things to help create for a person with an intellectual disability is a relationship with another people. People have relationships with their support workers, their families and others with intellectual disabilities but not with valued people. Having someone care enough about you to shovel the walk so that you get home safely on a stormy night after a long day is what people have to offer each other regardless of their ability or disability. It is often the small things in life that give us meaning and they come from the people around us who care.

Author – Donald Easson

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An innovative research project by Community Living Toronto in partnership with Centennial College and funded by Social Sciences and Humanities Research Council of Canada. Friendly Housemates matches post secondary students to live in a house or apartment with an individual with an intellectual disability to share in life experiences with a focus on social integration and community involvement.

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