"I'd rather be in pain than be patronized." A qualitative study of health care experiences of persons with disabilities.

Abstract

Background: Prior research shows that persons with disabilities (PWD) frequently receive inadequate health care and that physicians are uncomfortable caring for patients with disabilities, both of which may be attributed to the lack of disability education in medical training. Little is known about what adequate training would include or what PWD wish physicians knew about their experiences.

Objective: To inform the design of a preclinical elective course for medical students by learning from PWD what they believe is most important for physicians to know when providing their care.

Design: Semistructured interviews.

Setting: PWD in the greater Pittsburgh region.

Participants: We recruited individuals aged 18 years and older with disabilities, as well as parents of children with disabilities. Purposive, expert sampling and snowball recruitment took place through medical clinics familiar to the study, social media, and naturally occurring social networks. Of the 94 individuals who expressed interest, 15 were selected to participate.

Methods: Fifteen one-to-one interviews were conducted using a semistructured interview guide, and key themes were identified using thematic analysis.

Results: Study participants described many things they wanted physicians to understand prior to providing their care. They explained the preparation and collaboration necessary to adequately accommodate disability-related needs and the significant impact that failing to do so has on their health and well-being. They also offered examples of good care and practical suggestions for improving care.

Conclusion: Participants highlighted critical gaps in the health care system, underscoring the need for medical education that includes providing care to PWD and a better understanding of disability-related needs. Although the purpose of the study was to inform a preclinical elective course for medical students, this alone is insufficient to train a competent workforce. Further curriculum work is needed to ensure students receive a broad education on disabilities, including both clinical and preclinical instruction.