Health care access and quality for persons with disability: Patient and provider recommendations.

BACKGROUND: Significant disparities in health care access and quality persist between persons with disabilities (PWD) and persons without disabilities (PWOD). Little research has examined recommendations of patients and providers to improve health care for PWD. OBJECTIVE: We sought to explore patient and health care provider recommendations to improve health care access and quality for PWD through focus groups in the physical world in a community center and in the virtual world in an online community. METHODS: In all, 17 PWD, 4 PWOD, and 6 health care providers participated in 1 of 5 focus groups. Focus groups were conducted in the virtual world in Second Life® with Virtual Ability, an online community, and in the physical world at Agape Community Center in Milwaukee, WI. Focus group data were analyzed using a grounded theory methodology. RESULTS: Themes that emerged in focus groups among PWD and PWOD as well as health care providers to improve health care access and quality for PWD were: promoting advocacy, increasing awareness and knowledge, improving communication, addressing assumptions, as well as modifying and creating policy. Many participants discussed political empowerment and engagement as central to health care reform. CONCLUSIONS: Both PWD and PWOD as well as health care providers identified common themes potentially important for improving health care for PWD. Patient and health care provider recommendations highlight a need for modification of current paradigms, practices, and approaches to improve the quality of health care provision for PWD. Participants emphasized the need for greater advocacy and political engagement.

Health care experiences and perceptions among people with and without disabilities.

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.