Supporting and maximizing communication between individuals with intellectual disabilities and health care providers

The goal of the present study was to examine the barriers to access in health services faced by individuals with intellectual disabilities (ID), as well as the nature of communication between people with ID and those who are directly involved in supporting their health and well being. The study included in-depth interviews with five adults who have been identified as having ID and are supported by a community agency, five community agency support staff and four physicians who are specialists in supporting people who have ID. A qualitative content analysis approach facilitated the comparative exploration of key themes that each participant group saw as positive or negative influences on health care access and on effective health care communication. Themes drawn from the findings emphasize the unique roles each of these groups plays within the dialogical framework of the health care encounter. Of particular importance to informants was the issue of people with ID being seen as full participants in their own health care who, like all people, are unique individuals and not simply members of an identified or marginalized group. Participants across groups emphasized the need for the health care recipient to be known as an individual who is an expert in her/his own health and well being and, therefore, entitled to full participation with the support of but not control by others.