People with cognitive disabilities – like autism, attention deficit, and memory loss – are less satisfied with their healthcare than those in the general population, according to a study published by a Rutgers researcher. The study, published in Disability and Health Journal, examined 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 to them, 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,” said Elizabeth Stone, a faculty member of the Rutgers Center for Health Services Research at the Institute for Health, Health Care Policy and Aging Research and the lead author of the study.
Past research has shown that people with cognitive disabilities such as autism spectrum disorder and Down syndrome face barriers to accessing quality healthcare. Until now, research has focused on the types of care people receive or the perspectives of providers rather than the experiences of the patients with cognitive disabilities themselves.
Using a national sample of more than 22,000 adults, including those with and without cognitive disabilities, researchers analysed patient-reported experiences with healthcare services and compared the levels of satisfaction of experiences between those with and without disabilities.
Researchers found that individuals with cognitive disabilities rated their overall satisfaction with healthcare services as significantly lower than those in the general population. Those with cognitive disabilities also reported worse experiences in healthcare encounters.
Poor patient-provider communication can contribute to adverse outcomes for patients, pointing to the need for providers to improve their capacity to communicate with patients with disabilities.
“Addressing this problem might include incorporating disability competencies into medical education and should also include policies – for example, enhanced reimbursement – that reflect the increased time and effort that might be needed to ensure that the needs of disabled patients are being met,” 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 also can play a role. The researchers said patients should be proactive in preparing for healthcare appointments and asking for accommodations that may enhance their experiences. Future research in this area should examine how experiences with healthcare differs across the range of cognitive disabilities and by other disabilities and identities, according to the researchers.