“You hear what I’m saying, but you’re not listening”: Providing Better Care for Blind/Visually Impaired Patients

Context: Individuals who are blind/visually impaired face multiple barriers to quality health care, including minimal relevant training for primary health care providers. As part of a curriculum development project to expand disability-related health profession education, we discovered little research has examined, from the perspective of blind/visually impaired individuals, how providers should be trained to provide better care for this population.

Objective: We sought to understand, from the perspective of blind/visually impaired individuals, what providers need to know and do different to better care for this population.

Study Design & Analysis: We conducted a qualitative study which included four structured focus groups. Data was analyzed using thematic analysis with the aid of DeDoose software.

Setting: Focus groups were held at a local sight center in an urban, midwestern location.

Population Studied Twenty-two blind/visually impaired individuals.

Instrument: A structured focus group protocol was followed. Questions assessed general health care impressions, positive and negative health care experiences, and recommendations for training providers.

Results: Three themes were uncovered related to provider training: 1) disability etiquette with communication, asking for permission, and allowing for extra time with patients as subthemes, 2) addressing assumptions and attitudes and subthemes including assuming competence, assuming individuality, respect, and reducing stigma, and 3) blind/visually impairment specific needs with subthemes of empathy training and understanding specific barriers to care.

Conclusions: The healthcare field is slowly recognizing the need to provide training related to caring for individuals with disabilities. While some research has examined healthcare barriers and experiences for individuals who are blind/visually impaired, this is among the first work to examine, from the perspective of this population, the specific content to be included in trainings to improve care.