Many of us make assumptions based on a person’s appearance, behavior, our personal experiences, and what we believe that person might be thinking. But sometimes, we hear someone say something completely unexpected, causing us to reevaluate our opinion of that person. “Oops, I didn’t think about that!”
In the example below, from a study of medical students’ attitudes toward people with disabilities, “Colleen” describes an experience she had when working in a rehabilitation engineering center that provided assistive communications technologies.
This woman in her 20s came in. She was in a wheelchair and couldn’t speak. Her head was to one side, and she was drooling. We all spoke to her as if she were a little child. She wasn’t responding, and I thought she didn’t understand a word I said. It was a lot of “goo goo, gaga. You’re getting a computer. Isn’t that wonderful?”
We set her up with a computer that had word-prediction software and various shortcuts….We were trying to teach her how to use the thing, saying “Hit the F button.” She kept missing the F button and hitting the bathroom button. And we’d say, “That’s okay. You’re doing great!” Finally, someone had the good sense to say, “Do you need to go to the bathroom?”
Then we got her set up with the word-processing program. Even at that point, I underestimated what was going on in her head because of what she looked like. Within about 2 seconds, she typed, or word-predicted, the sentence, “This is just like having a baby: you wait 9 months and then go to the hospital.” The baby was her getting the computer after waiting so long. This was not at all in tune with what I had imagined from looking at her! I think about that a lot. (Iezzoni et al, 2005)
Colleen isn’t alone in sometimes making invalid assumptions. When caring for people with diversabilities, many of us make mistakes in action, communication, or assessment. A relatively new term, diversability replaces the more negative disability. Whereas disability denotes lack of ability and talent, diversability denotes diverse abilities and talents. It recognizes and celebrates each person’s differences, capabilities, and unique contributions—promoting inclusion in society, not exclusion.
This article identifies diversability barriers in health care and discusses how we can overcome them by promoting an inclusive environment with good communication, within the eight dimensions of patient-centered care.
Identifying barriers in healthcare settings
The Institute of Medicine’s 2001 report Crossing the Quality Chasm: A New Health System for the 21st Century noted that our healthcare system doesn’t provide consistent, high-quality medical care to all people. About 20% of the U.S. population have conditions that qualify as diversabilities. In 2011, the United Nations Convention on the Rights of Persons with Disabilities and the World Health Organization’s World Report on Disability identified poor coordination of services, inadequate staffing, and weak staff competencies as barriers affecting quality, accessibility, and adequacy of services for persons with diversabilities.
Research suggests that barriers to satisfactory healthcare for these persons persist. McClintock et al (2016) conducted a study with four focus groups of 18 people with and without diversabilities. Their research found themes describing the following barriers to healthcare:
- poor coordination among providers
- difficulty with insurance, finances, transportation, and facilities
- short duration of physician visits
- inadequate information given to patients by healthcare providers
- poor quality of patient teaching
- feelings of being diminished or deflated.
Some patients reported they felt they were being made to feel invisible or were seen as incompetent because of their “disability.” For many, a chasm separates the type of care they’ve received from the care they should have received.
Breaking down barriers: Patient-centered care
Implementing patient-centered care helps break down barriers and promotes culturally sensitive support. Patient-centered care allows healthcare providers to get to know each patient individually. The Picker Institute identified the following eight dimensions of patient-centered care that most affect patient satisfaction:
- respect for patients’ values, preferences, and needs
- coordination and integration of care
- information, communication, and education
- physical comfort
- emotional support and relief of fear and anxiety
- involvement of family and friends
- continuity of and transitions in care
- access to care.
When you include these eight dimensions in your practice, you can help ensure an inclusive environment that improves patient satisfaction, optimizes care, and promotes health for persons with diversabilities.
1. Respect for patients’ values, preferences, and needs
- Ask patients how they’re feeling and what pressing concerns they have today.
- Assess the patient’s beliefs, values, preferences; sexual behavior; possible recreational substance use; and cultural, ethnic, and socioeconomic background when discussing and implementing a plan of care that promotes compliance and successful outcomes.
2. Coordination and integration of care
- When scheduling appointments, office telephone staff should determine the patient’s specific needs to assign sufficient time for the appointment, thus eliminating delays and improving the patient experience.
- Staff education on how to assist with patient transfer, undressing, and maintenance of balance and positioning promotes patient comfort and expedites provider-patient interaction.
- Patients with diversabilities shouldn’t have to wait longer than others to be seen. Staff should reserve an appropriate room for those who make appointments in advance.
3. Information, education, and communication
Information and education:
- Explain tests and procedures clearly in short sentences the patient can easily understand. Provide information at a fifth-grade reading level. Suspect low literacy, illiteracy, or learning disabilities if the patient has trouble understanding instructions or synthesizing information.
- For patients with short attention spans, provide the most important information first, reinforce key points, and ask for feedback to determine their comprehension.
- For patients with partial vision, use colored print and a 14-point or larger font.
- Before assisting the patient, ask for permission and follow his or her instructions.
- With a visually impaired patient, introduce yourself when entering the room to make your presence known.
- Offer to shake hands even if the patient has an artificial limb or restricted upper-body movement.
- Greet the patient and speak in a way he or she will understand. When possible, speak directly to the patient rather than to the caregiver.
- When interacting with patients who have speech impediments or increased oxygen demands, give them time to articulate their words. If you don’t understand what they’re saying, ask for clarification rather than moving on or pretending you do understand. Writing implements or electronic devices can be useful in this situation.
- Give patients time to tell their story and describe how they perceive their illness or the condition affecting their identity, as well as their image of themselves and their ability to function daily.
- Get to know the patient better by asking what he or she does for fun, how school or work is going, and what plans the patient has for the future.
- Keep in mind that patients with diversabilities don’t like excessive praise for performing everyday tasks.
- When speaking to someone in a bed or wheelchair, sit at eye level to show individualized attention. Avoid the impression of being rushed.
- Because some patients may consider the origin of their diversability a personal issue, get to know the patient before asking about it.
- Use inclusive language to improve communication. (See Words Matter: Communicating with patients who have diversabilities)
4. Physical comfort
- Respect the patient’s immediate environment. Avoid leaning on the patient’s wheelchair; he or she may consider this an invasion of personal space.
- Let therapy pets or guide dogs work without distraction. Don’t pet or play with them.
- If the patient can’t support her legs in stirrups (for instance, during a gynecologic exam), make sure a padded leg support is available.
5. Emotional support and relief of fear and anxiety/
- Teach patients about their medical condition (other than that causing their diversability) and explain the impact it may have on themselves and their family. Identify resources that can provide assistance.
6. Involvement of family and friends
- Like other patients, those with diversabilities may choose to arrive at the healthcare facility alone. If so, provide reasonable assistance to enable them to receive care.
7. Continuity of and transitions in care
- Patients and family members expect access to necessary healthcare resources on a continuing basis. Once the patient’s accessibility needs have been identified, document them in the health record.
8. Access to care
- Keep pathways to entrances, exits, waiting rooms, and exam rooms unobstructed.
- If the patient needs a mobility device, such as a wheelchair, stretcher, or transfer board, make sure the facility room has an adjustable-height table that can be moved. Keep in mind that wheelchairs need 30″ x 48″ of floor space to align with an exam table. Also, wheelchairs require 60″ to turn 360 degrees; portable lifts and stretchers need even more space.
What else you can do
Americans with diversabilities make up the largest underserved population in the country. Since the Americans with Disabilities Act went into law 1990, many social barriers have been removed or reduced. But more work needs to be done to improve healthcare outcomes. Promoting an inclusive environment can help break down barriers.
Diversity leaders can take the initiative to sponsor educational programs in their organizations that emphasize that people with diversabilities are a diverse population that remains largely unnoticed and grossly underserved. As healthcare professionals use more inclusive language and behaviors, barriers to better health outcomes will start to fall. As we become more understanding of the healthcare needs of this underserved population, we can advocate for modification of facilities so they’re more physically accommodating. When physical and professional barriers are removed, people with diversabilities can have more satisfying health outcomes.
The authors work at East Carolina University in Greenville, North Carolina. Melissa Schwartz Beck and Cheryl Elhammoumi are clinical assistant professors in the College of Nursing. Jitka Virag is an assistant professor in the Department of Physiology.
Americans with Disabilities Act. Access to medical care for individuals with mobility disabilities. 2010.
Bailey E. What assumptions are you making about others? December 4, 2013.
Baker A. Crossing the quality chasm: A new health system for the 21st century. BMJ. 2001;323(7322): 1192.
Brault MW. Americans with disabilities 2010: Household economic studies. U.S. Department of Commerce. July 2012.
Burger J. Communication. In: Potter PA, Griffin Perry A, Stockert P, Hall A. Fundamentals of Nursing. 8th ed. St. Louis, MO: Mosby; 2013: 309-27.
Folse VN. Self-concept. In: Potter PA, Griffin Perry A, Stockert P, Hall A. Fundamentals of Nursing. 9th ed. St. Louis, MO: Elsevier: 2017: 701-15.
Golden L. Diversity leaders: 6 things never to say about disabilities. DiversityInc.com. February 20, 2013.
Guidelines for inclusive language. Department of Education. Tasmania, Australia. 2012.
Hall A. Patient education. In: Potter PA, Griffin Perry A, Stockert P, Hall A. Fundamentals of Nursing. 8th ed. St. Louis, MO: Mosby; 2013: 328-47.
Hanyok LA, Hellmann DB, Rand C, Ziegelstein RC. Practicing patient-centered care: the questions clinically excellent physicians use to get to know their patients as individuals. Patient. 2012;5(3):141-5.
HR Council for the Nonprofit Sector. Diversity at work: Inclusive language guidelines. 2016.
Iezzoni LI, Ramanan RA, Drews RE. Teaching medical students about communicating with patients who have sensory or physical disabilities. DSQ. 2005;25(1).
Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press; 2001.
Lagu T, Iezzoni LI, Lindenauer PK. The axes of access—improving care for patients with disabilities. N Engl J Med. 2014;370(19):1847-51.
McClintock HFDV, Barq FK, Katz SP, et al. Health care experiences and perceptions among people with and without disabilities. Disabil Health J. 2016;9(1):74-82.
Peacock G, Iezzoni LI, Harkin TR. Health care for Americans with disabilities—25 years after the ADA. N Engl J Med. 2015;373(10):892-3.
Picker Institute. Principles of patient-centered care.
Rhymestine B. Ability, disability, diversability. July 24, 2011.
Stockert PA. The health care delivery system. In: Potter PA, Griffin Perry A, Stockert P, Hall A. Fundamentals of Nursing. 9th ed. St. Louis, MO: Elsevier; 2017:14-30.
World Health Organization. World report on disability. 2011.
Zack MM. Health-related quality of life—United States, 2006 and 2010. MMWR Suppl. 2013;62(3):105-11.