Deaf People’s Health Literacy By Teri Hedding MA, CDI Mount Sinai Health System Chicago, IL.
Literacy • Collins English Dictionary (2010): • The ability to read and write.
Functional Literacy • A person must have basic literacy to function in everyday situations: • Paying bills • Shopping • Reading street signs/maps
Health Literacy • More than just the ability to read and write. • Requires a complex group of reading, listening, analytical, decision-making skills to be able to take care of healthcare needs.* * National Network of Library (2010)
Health Literacy • Fill out complex forms • Locate providers & services • Understand consent forms • Share health history with doctor • Follow doctor’s instructions • Read the prescription instructions • Maintain a healthy lifestyle • Manage chronic diseases* * Medline Plus (2010)
Statistics • 90 million people in U.S (nearly ½ of population) have trouble understanding and using health information* • Deaf adults were found to have lower health literacy compared to their hearing counterparts** *Health Literacy: A Prescription to End Confusion by L. Nielsen-Bohlman, A.M. Panzer, & D.A. Kindig; Washington DC; National Academics. ** The Current State of Health Care for People with Disabilities by National Council on Disability, Washington, DC
Health Disparities • Social epidemiologist, Paula Braveman (2006) defined “health disparities” as: “Group differences in health that are unnecessary, preventable, and unjust”
Health Disparities • Elderly persons, immigrants, and low-income groups receive poor quality services or treatments * • Recent study in Chicago demonstrated that disparities in health status indicators between Black and Whites have widened significantly over time** *Braveman, P. (2006). Health Disparities and Health Equity: Concepts and Measurement. Annual Review of Public Health 17:,167-194 **Orsi, J., Margellos-Anast, H.,& Whitman, S. (2010) Black-White Health Disparities in the United States and Chicago: A 15 –Year Progress Analysis American Journal of Public Health, Volume 100 (2), 349-356
Deaf Adults • 3x more likely to report fair to poor health* • High blood pressure & diabetes were more prevalent** • Poor reading skills linked to low health literacy and high risk for health disparities*** • Poor health knowledge * 2008 National Center for Health Statistics ** 2009 National Council on Disabilities ***Pollard, R.Q, JR, & Barnett, S. (2009) Health-Related Vocabulary Knowledge Among Deaf Adults. Rehabilitation Psychology, 54 (2) 182-185
Low Health Knowledge • A Survey with 203 Deaf people in Chicago in 2004 * Partnership between Sinai Health System & Advocate Illinois Masonic Medical Center ** Funding made possible by Michael Reese Health Trust
Low Health Knowledge • 40% of respondents could not identify a single warning sign of heart attack • 62% of respondents could not identify any warning sign of stroke
Low Health Knowledge • 38% of our participants knew what cholesterol was.
Low Health Knowledge • 18% of our women subjects knew what a pap smear was.
Low Health Knowledge • 56% did not identify having anal sex without a condom increases the risk of contracting the HIV virus.
Real Life Experiences • A patient was so happy when the doctor told him that the testing results showed that he was HIV positive.
Real Life Experiences • A diabetic patient received the package of insulin; however she put it away in her closet without any understanding why the medicine was needed.
Real Life Experiences • A female patient thought she was pregnant when she was actually going through menopause. • Another female going through menopause blamed the doctor for “locking in” during pap smear.
Real Life Experiences • Doctor asked a deaf patient to sign the consent forms for an amputation without an interpreter.
Disclaimer There are many Deaf individuals who demonstrate health knowledge similar to hearing persons. Typically, these patients are well educated and had effective communication with their families while growing up.
Different Factors • Environmental factors • Professional factors • Patient factors • Interpreter factors
Environmental Factors • Incidental learning • 90% of Deaf children are born into hearing families. • Many parents typically don’t become fluent in ASL.
Environmental Factors • “Dinner table syndrome” • A deaf child is unable to hear about his grandmother’s surgery during surgery.
Environmental Factors • Mom telling Dad about Aunt Pam suffering a stroke. • Hearing child • Deaf child
Incidental Learning • A hearing child overhears a TV program his parents were listening and learns the warning signs of a heart attack. • He then would probe his parents about what he heard and ask further questions.
Environmental Factors • A deaf child is unable to hear about the health information on television or radio.
Environmental Factors • A deaf child is often left out in the conversations between his parents and the doctor. • Parents are the “gatekeepers” of the information.
Environmental Factors • Dr Robert Pollard (1993) Global Fund of Information Deficit
Environmental Factors • A deaf child may not have the basis to even ask the right questions—and thereby LEARN
Environmental Factors • Deaf people from other countries: • May or may not have established language • May or may not have fund of information; depending on what’s available in that country
Professional Factors • Lack of deafness training • Pathology of hearing loss • Focus on “curing” or restoring function
Professional Factors • Assumptions: • Deaf people can read lips effectively • Deaf people can read & write English • “broken English” indicates that a Deaf patient is not intelligent or has a cognitive disorder.
Professional Factors • Time pressures: • Doctors irritated or impatient with writing notes • Doctors sometimes use abbreviations: i.e. 4x a day w/meals • Terrible handwriting!
Professional Factors • “Deaf-friendly” handout sources nonexistent
Professional Factors • Refuse to provide interpreters • Overestimate family member’s sign language skills.
Patient Factors • Lack of “patient model” • Appointments • Waiting rooms • Repeated questions
Patient Factors • Personal medical history unknown • Family medical history also unknown.
Patient Factors • Unaware of the names of medication • Visual identify of medication • Expectation of a pill cure for all medical problems.
Patient Factors • Little emphasis on preventative medicine • “I don’t hurt” • “I don’t see anything abnormal” • ”I’m not sick”
Patient Factors • Unrealistic expectation of physician’s time
“ I had a rash on my legs and tried the doctor’s medication but it didn’t go away. So I was reading in a magazine and it said to use lip balm which I did. It went away. That was five years ago. My cousin also had a rash on her arm but she is allergic to strawberries. I told her not to eat them but she is stubborn….”
Patient Factors • No time to appropriately explain: • Diagnosis • Disease process • Medications • Side effects
Patient Factors • ‘You are a doctor. Why are you sending me to another doctor ?!?!”