Patient participation of women with ID is limited because of both physician and patient factors

By Joanne Wilkinson, MD
Family Medicine, Boston University School of Medicine; Community Health Sciences, Boston University School of Public Health, Boston, MA

We know that people with intellectual disabilities (ID) are more and more likely to get their health care in community settings, from community-based health care providers. In general, people's relationships with their health care provider are important to their overall health, but we don't know enough about the relationships between women with ID and their doctors. We also don't know what patient-provider communication is like for women with ID and their health care providers, and how health care providers and women with ID view each other.

What did you do in your research?
We interviewed 27 women with ID (ages 40 and older), recruited from several community-based sources in MA, and 22 health care providers. We asked women with ID to describe their communication and relationships with their doctors, their perceptions of how they were treated and what doctors could do to communicate better with them. We asked health care providers about their perceptions of patients with ID, what it's like caring for people with ID, and how they could communicate better with their patients with ID. Then we compared answers from providers and answers from women to better understand what it's like for women with ID to get primary care, and how we can improve care.

What did you find out?
Themes important to both groups included time, how the support worker should be used in the encounter, and the nature of the physician-patient relationship. Patients expressed frustration at how little time they spent with their physician, and wished that physicians would speak directly to them instead of to their support worker. Physicians felt that patients with ID took too much time, and said that they preferred communicating with the support worker. The interviews also revealed health care providers may have unconscious biases about people with ID and use language consistent with these biases, for example by referring to persons with ID as “simple, pleasant, and like children” (p. 1064).

What are the take-home messages?
Patient participation is encouraged for people with ID, but is limited because of both physician and patient factors. Physicians and patients with ID sometimes miscommunicate, and they might have incorrect ideas about each other, which can impact their relationships. Greater awareness of these challenges may improve care for patients with ID. For physicians, becoming more aware of personal beliefs and perceptions of people with ID may benefit clinical encounters with these patients. In addition, medical education can also serve to provide opportunities for trainees to be exposed to people with ID in the community. Persons with ID and those working with them, can work to increase their preparation for clinical visits, which may lead to their becoming more informed consumers. This can be accomplished through the development and dissemination of developmentally appropriate health education materials for both people with ID and their support workers.

To learn more about these findings contact Nechama Greenwood.

Full Journal Article
Wilkinson, J., Dreyfus, D., Bowen, D. & Bokhour, B. (2013). Patient and provider views on the use of medical services by women with intellectual disabilities. Journal of Intellectual Disability Research, 57, 1058–1067.