Making decisions about our health is a human right - one that applies to all people including those with intellectual disabilities. Unfortunately, people with intellectual disabilities don’t always have their right to self-determination recognized or receive the support they need to make their own health decisions. Often families and health professionals don’t have the information and tools they need to understand how the person with a disability can be involved.
Dr. Elise Matthews is leading a Saskatchewan Health Research Foundation-funded project to evaluate tools that will help people with intellectual disabilities communicate their wishes so they can be part of the decision-making process about their own health.
“The goal of this project is to ensure that people with intellectual disabilities are part of their own health-care decisions and that they are respected and supported so their health goals can be achieved,” says Matthews, an associate professor in the Faculty of Nursing at the University of Regina.
Health care decisions range from preferred ways to communicate, to choice of medical treatments in emergencies, to end-of-life care.
“Inclusion Saskatchewan has developed plain language documents that help patients to engage in and communicate their health-care decisions to family advocates, disability support professionals, and health-care professionals,” says Matthews. “Our team will evaluate the accessibility and acceptability of these tools in a Saskatchewan context from multiple stakeholder perspectives.”
The mission of the organization Inclusion Saskatchewan is to ensure that citizens of Saskatchewan who have intellectual disabilities are valued, supported, and included as members of society and have opportunities and choices in all aspects of life.
“We will help to refine important research questions that can then be incorporated into a national study to help create even more and better supports for people with intellectual abilities across Canada,” says Matthews. “People with intellectual disabilities are key members of our research team, which ensures these tools and research questions are relevant.”
The SRHF Align Grant was created to provide funding for research that aligns with the Saskatchewan context and responds to the needs of the province.