Claiming the 3Rs in health—rights, respect and responsibility

Interactive research and training program shows that individuals with intellectual disabilities can gain new skills to manage their own health care and avoid health rights violations.

Dr. Maurice Feldman

• Professor, Centre for Applied Disability Studies & Dept. of Child and Youth Studies, Faculty of Social Sciences, Brock University, St. Catharines, Ontario

Dr. Frances Owen

• Associate Professor, Dept. of Child & Youth Studies and Centre for Applied Disability Studies, Faculty of Social Sciences, Brock University, St. Catharines, Ontario

Associates and Partners

• Dr. Dorothy Griffiths, Dept. of Child & Youth Studies and Centre for Applied Disability Studies, Faculty of Social Sciences, Brock University
• Dr. Voula Marinos, Dept. of Child and Youth Studies, Faculty of Social Sciences, Brock University
• Dr. Christine Tardif-Williams, Dept. of Child and Youth Studies, Faculty of Social Sciences, Brock University
• Dr. Donato Tarulli, Dept. of Child and Youth Studies and Centre for Applied Disability Studies, Faculty of Social Sciences, Brock University
• Dr. Deborah Yeager-Woodhouse, Applied Linguistics, Faculty of Humanities, Brock University
• Dr. Leslie Atkinson, Dept. of Psychology, Ryerson University
• Dr. Nicholas Lennox, School of Medicine, University of Queensland (Australia)
• Dr. Paul Fedoroff, Royal Ottawa Hospital
• Dr. Yona Lunsky, Centre for Addiction and Mental Health and University of Toronto
• Kajsa Klassen (student)
• Jeffrey Hamelin (student)
• Community Living Welland Pelham
• Community Living Port Colborne – Wainfleet
• Community Living York South
• Social Sciences and Humanities Research Council (SSHRC)

Issue

Persons with intellectual disabilities tend to experience difficulty being active advocates for their own health care in ways that other people take for granted. Despite efforts to promote equal rights enshrined under the Canadian Charter of Rights and Freedoms, persons with intellectual disabilities (ID) remain vulnerable to inequalities.

Violations can be as common as a physician addressing the caregiver rather than the patient. Or, in some care giving situations, they can involve invasion of privacy, financial or sexual exploitation, or unjust use of restraint.

“It’s important not to sell people with intellectual disabilities short,” says Dr. Maurice Feldman, of Brock University, and one of the principal investigators of the 3Rs Human Rights research project that is co-sponsored by Brock University and Community Living Welland Pelham. “The challenge is reaching them in ways that they can understand and participate in their own health care.”

“We know that they want this and the opportunity to learn what to do—not to have to always act through an intermediary,” explains Dr. Frances Owen, also of Brock University, and co-principal investigator on the project.

People with ID often have more health issues than the average Canadian. Their health situations can also be unique and complex, making the need to support two-way communication with health professionals even more pressing.

Research

“Our focus with this and the 3Rs Human Rights project is on rights promotion through education which we hope will foster full participation of persons with disabilities and mitigate abuse,” says Dr. Owen.

With the help of a Canadian Institutes of Health Research KT Science grant, the research team used innovative interactive teaching tools—including board games, video clips and dramatized scenarios—to share health and health rights information with participants with intellectual disabilities. The same tools were used to evaluate the individuals’ ability to recall and apply the concepts they had learned across a broad set of circumstances.

“Both the research and the training were always set in the context of the 3Rs: Rights, Respect and Responsibility,” says Dr. Feldman. “This means helping people with intellectual disabilities to not only learn about their health rights, but to understand that these have to be exercised in a way that is respectful of themselves and other people.”

The training began with a crash course on human biology. Researchers used life-size, anatomically correct “cut-outs” to help participants understand the basics about how the body works, what kind of things commonly go wrong, and what that might feel like. From there, participants learned what their health rights should be, and how to identify and distinguish situations where those rights were not being upheld.

“We can’t say enough about how important it is to be able work on-site with our partner, Community Living Welland Pelham,” says Dr. Owen. “They have been active collaborators, helping us establish relationships with people with ID and caregivers, as well as providing much needed office space.”

“Having caregivers and people with intellectual disabilities involved in the design helped us to avoid mistakes we might have made had we assumed we knew what it is like to live with ID,” says Dr. Feldman.

“At one point, we worried we might be giving members of our advisory team too much to do. But no, they just said: Let us know when you have more!”

Results

“This study is really the first of its kind, and our results show that training like this can make a difference,” says Feldman. “The participants were able to take the concepts they had learned and apply them to new and completely unrehearsed situations.”

The next step for the team is to try to create techniques that can reach people who don’t have a capacity for language. Incorporating new technologies like tablets could open up new avenues in this area. This kind of work could also benefit seniors who are having cognitive difficulties.

International interest in the team’s work is strong and they are about to publish their results in the prestigious Journal of Intellectual Disability Research.

“We’d like to get this information to a policy level where it can make a difference across the health care system,” says Dr. Feldman. “But we’d also like to get these techniques into practice at the grassroots, so health professionals and caregivers can relate with greater sensitivity to people with intellectual disabilities.”