This work was presented as a poster at the North American Primary Care Research Group (NAPCRG) Annual Meeting in New York City, NY, November, 2014.
Heather F. de Vries McClintock, M.S.P.H., M.S.W., Ph.D., Frances K. Barg, Ph.D., Sam P. Katz, B.A., Margaret G. Stineman, M.D., Alice Krueger, M.S., Patrice M. Colletti, S.D.S., M.A., M.S., Tom Boellstorff, Ph.D., Hillary R. Bogner, M.D., M.S.C.E.
Disability and Health Journal, Vol. 9, Issue 1, p74–82
DOI: http://dx.doi.org/10.1016/j.dhjo.2015.08.007
Background
Little is known about health care experiences among people with and without disabilities.
Objective
We sought to explore perceptions of people with and without disabilities related to their health care experiences.
Methods
Nineteen persons with and without disabilities participated in one of four focus groups. Focus groups were conducted in the physical world in Milwaukee, WI and in the virtual world in Second Life® with Virtual Ability, a well-established community designed by and for people with a wide range of disabilities. A grounded theory methodology was employed to analyze focus group data. Inclusion of physical and virtual world focus groups enabled people with a wide range of disabilities to participate.
Results
While some participants described instances of receiving good care, many discussed numerous barriers. The main themes that emerged in focus groups among both persons with and without disabilities related to their health care experiences including poor coordination among providers; difficulties with insurance, finances, transportation and facilities; short duration of visits with physicians; inadequate information provision; feelings of being diminished and deflated; and self-advocacy as a tool. Transportation was a major concern for persons with disabilities influencing mobility. Persons with disabilities described particularly poignant experiences wherein they felt invisible or were viewed as incompetent.
Conclusions
Both persons with and without disabilities experienced challenges in obtaining high quality health care. However, persons with disabilities experienced specific challenges often related to their type of disability. Participants stressed the need for improving health care coordination and the importance of self-advocacy.