People with cognitive disabilities — such as autism, attention deficit and memory loss — are less satisfied with their health care than the general population, according to a study published by a Rutgers researcher.
The study, published in Journal of Disability and Healthexamined how a national sample of adults experience the care they receive and the factors that contribute to their experiences.
People with cognitive disabilities were less likely than people without cognitive disabilities to report that providers listened carefully, explained things or gave advice in a way that was easy to understand, spent enough time with them, or showed respect for what they had to say .”
Elizabeth Stone, faculty member at the Rutgers Center for Health Services Research in the Institute for Health, Health Care Policy and Aging Research and lead author of the study
Previous research has shown that people with cognitive disabilities such as autism spectrum disorder and Down syndrome face barriers to accessing quality health care. Until now, research has focused on the types of care people receive or the perspectives of providers rather than the experiences of patients with cognitive disabilities themselves.
Using a national sample of more than 22,000 adults, including those with and without cognitive disabilities, researchers analyzed patient-reported experiences with health care services and compared satisfaction levels of the experiences between those with and without disabilities.
The researchers found that people with cognitive disabilities rated their overall satisfaction with health care services as significantly lower than the general population. People with cognitive disabilities also reported worse experiences in health care encounters.
Poor patient-provider communication can contribute to adverse patient outcomes, indicating a need for providers to improve their ability to communicate with patients with disabilities.
“Addressing this problem may include integrating disability competencies into medical education and should also include policies – for example, enhanced reimbursement – that reflect the increased time and effort that may be required to ensure that needs are met of patients with disabilities,” said Stone. , who is an instructor of psychiatry at Rutgers Robert Wood Johnson Medical School.
In addition to the need for structural and policy changes, patients in general can also play a role. The researchers said patients should be proactive in preparing for health care appointments and ask for accommodations that may improve their experiences.
Future research in this area should examine how experiences with health care differ across the spectrum of cognitive disabilities and across other disabilities and identities, according to the researchers.
Study authors include Elizabeth Wise of the Johns Hopkins School of Medicine, Liz Stuart of the Johns Hopkins Bloomberg School of Public Health and Beth McGinty of Weill Cornell Medicine.
Source:
Journal Reference:
Stone, EM, et al. (2023). Experiences of health care services for people with cognitive disabilities and mental health conditions. Journal of Disability and Health. doi.org/10.1016/j.dhjo.2023.101547.