Accessibility: A Universal Precaution
My dad states his age as older-than-dirt. He's lost all hearing and has a bad back. He gets around with a walker. It's impossible for him to call the doctor to report an issue or schedule an appointment. He cannot drive or use public transportation. A routine office visit—getting dressed, out of the house, into the car, out of the car, into the office and onto the exam table, and then the whole process in reverse — each step is an exhausting physical challenge and an assault on his pride. It's also exhausting and trying for Mom, his primary caregiver, driver and emotional compass. A check-up takes most of a day. Nothing is simple.
Recently, Dad slipped off the edge of the bed and twisted his knee trying to get up. That led to four 911 calls: one to get him up (and discover he could not stand), and three "citizen assists" to get him to the doctor's office, from there to the hospital, and after a night in the hospital, to get him home and into bed. Thank you, my fellow tax payers.
He's not alone.
About 70 million of us Americans have such access needs that affect hearing, vision, or mobility and impair capacity to obtain heath information and services. People with access needs contend with marked health disparities that may originate from the most fundamental level —like inability to schedule an appointment, open a pill bottle, or read the fine print dosing instruction. Disparities also come from health professionals and researchers acting on assumption and stereotyping instead of data.
Access: first pre-requisite to health literacy
Access, the capacity to obtain…. information and services, is the first prerequisite to health literacy. And yet, several reviews report accessibility is not a topic of health literacy research and scholarly discussion. Further, access needs is a missing demographic variable in most national databases.
Case in point: the 2003 National Assessment of Adult Literacy population sample included 30% with access needs; among them nearly half (48%) were deemed to have below basic health literacy. This is likely an underestimation since NAAL excluded those "who could not be interviewed due to cognitive or mental disabilities" and did not report demographics of those with access needs. A worldwide review of interventions to improve health literacy reports that research has, for the most part, followed NAAL's example and intentionally excluded people with mental or physical disabilities, along with other disadvantaged or "hard-to-reach" groups. Lumping together and then excluding "the disabled" from research causes disparities to persist; it's ethically questionable and alienating. Reacting to a nurse who obviously assumed that his access needs indicated a cognitive deficit, Dad retorted, " I've got a little back problem. I can read."
Integrate accessibility into research, practice, policy
Health literacy standards should include accessibility and universal design approaches that make healthcare environments and information products usable to the greatest extent possible by everyone, regardless of their age, ability, or status in life. Health literacy research should include accessibility, directly involve people with access needs, and report access-related demographics. To make the research process itself accessible to those with access needs, reports, like other health information, should be available in multiple formats: standard, large print, Braile, text only electronic format, audiotape, sign language.
Experts suggest we make greater use of access-enabling assistive technology to communicate with people with disabilities. The technologies show how universal design and commitment to accessibility help us all; email, voice recognition, captioning, GPS — all were originally designed for those with access needs.
References & further reading
Perlow E. (2010). Accessibility: Global Gateway to Health Literacy. Health Promotion Practice 11 (1); 123-131.
Hollar DW & Rowland J. (2015). Promoting Health Literacy for People with Disabilities and Clinicians Through a Teamwork Model. Journal of Family Strengths 15 (2): article 5. Available at http://digitalcommons.library.tmc.edu.jfs/vol15/iss2/5
D'Eath M, Barry MM, & Sixsmith J.(2012)tera Rapid Evidence Review of Interventions for Improving Health Literacy. Stockholm: European Center for Disease Prevention and Control.