healthcare experiences of adults deaf since childhood: implications for people who work with deaf...
TRANSCRIPT
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Healthcare experiences of adults deaf since childhood:
Implications for people who work with deaf children
Steven Barnett MD
University of Rochester
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Take Home Messages
• Childhood healthcare experiences influence adult perspectives
• Adults report limited access to health information
• Adults report limited access to healthcare communication
• Disparities exist in research and health
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Acknowledgements
• AHRQ
• CDC/ATPM
• CDC PRC
• Bayer Institute for Health Care Communication
• colleagues and collaborative partners
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Outline
• Describe the population(s)
• Research on healthcare and health
• Implications
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Why health & healthcare?
• Evidence of health disparities
• Frequently overlooked group
• “Rubella bulge”
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Research is limited
• Prelingually deafened adults
• Prevocationally deafened adults
• Research conducted in ASL
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Age at Onset for Deaf Adults
• Before age 3 yrs 6.6%
• Age 3-19 years 10.0%
• Before 19 (but unknown) 0.5%
• Older than 19 years 82.9%
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From Barnett & Franks (2002) HSR. Data from NHIS 1990-1991.
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Research in ASL
• US Census does not measure ASL use
• Different definitions for “deaf”
• Signed communication is not all ASL
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Adult ASL users
• Most ASL users became deaf as children
• Many adults deaf since childhood use ASL
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The math
• US deaf 3.8M – 4.8M
• Prevocational deaf (18%)684K – 864K
• Prelingual deaf (8%) 304K – 384K
• ASL users 350K – 500K
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Demographics
General pop. adults
Prelingual deaf adults
Age 44.0 ± 0.2 44.5 ± 1.5
White 85.1 ± 0.6 91.0 ± 2.4
Married
(not separated)66.1 ± 0.4 49.8 ± 4.3
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Demographics
• Less education
• Lower income
• Downwardly mobile?
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Health
• General population 0.85 ± 0
• Prelingual deaf adults 0.68 ± 0.2
HP2000 YHL measure (1=good health)
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Healthcare services
• Less likely to have seen a physician
• Fewer physician visits
• Similar to other groups with difficulties with healthcare communication
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Healthcare services
Accessible facilities record more visits with deaf adults and their families
• NTID/RIT
• URMC
• Folsom Family Medicine
• Baltimore
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Health Insurance
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Health Risk Behaviors
Smoking
Less likley to be current smokers
Prelingual deaf AOR= 0.48 (0.23, 0.99)
Postlingual deaf AOR= 1.07 (0.86, 1.33)
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Health Risk Behaviors
• Seatbelts ?
• Helmets ?
• Alcohol ?
• Drugs ?
• Sex ?
• Impaired driving ?
• Combinations ?
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Health Disparities
Retinitis Pigmentosa
120-240 times higher
• Prevalence (general population) = 1/4000
• Prevalence (childhood deafness) = 3-6%Usher Syndrome
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Health Disparities
Prolonged QT Syndrome
15 times higher
• Prevalence (general population) = 1/5000
• Prevalence (childhood deafness)= 3/1000 Jervell and Lange-Nielsen syndrome
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Health Disparities
Diabetes
• Prevalence (general population) = ~7%
• Prevalence (childhood deafness) = ?
Congenital rubella syndrome
Mitochondrial inheritance
Lifestyle issues
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Healthcare Communication
Frustration• Face masks• Automated telephone systems• Limited email and internet access• Writing• Interpreter services• Direct communication• Low satisfaction
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Healthcare Communication
Self advocacy
• Patients/families: often reluctant to request interpreter services
• Physicians: patients often do not request interpreter services
Learned behavior
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Healthcare relationships
Trust
• Communication
• Life experience issue
• Implications for self advocacy
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Health Information
Family Health History
• Little information
• Often don’t know it is important
• Embarrassing
• “adoption model”
• Implications with genomics
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Health Knowledge
HIV
• >70% said deaf people could not get HIV
• >50% did not know the meaning of “HIV positive”
From Goldstein MF, Eckhardt EA, Joyner P, National Development and Research Institutes, NYC presented at APHA November 2004.
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Health Information
Cardiovascular Health
• 40% could not identify signs of heart attack
• >60% could not identify signs of a stroke
From Margellos H, Hedding T, Kaufman G, Perlman T, Miller L, and Rodgers R, Sinai Health System, Chicago, presented at APHA November 2004.
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Health Information
• Desire for information about children’s health and development
• Public health messages
• Basic health information (general, individual and family)
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Health Literacy
• Associated with health outcomes
• No tools for use with adults deaf since childhood
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Health Literacy
• Rapid Estimate of Adult Literacy in Medicine
• Modified REALM
• 61 deaf adults, 48 had a college degree
• 57 completed m-REALM
• 38 scored in the HS grade level (highest)
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Promising Future
• Physicians with childhood onset deafness
• Agency for Healthcare Research & Quality
• CDC
• National Center for Deaf Health Research
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What to do
Healthcare
• Facilitate access to healthcare communication
• Foster a positive relationship between a deaf child and his/her clinicians
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What to do
Health Knowledge
• Facilitate access to health information
• Teach children family health history
• Directed teaching
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What to do
Foster Self Advocacy
• Nurture self advocacy skills (self/families)
• Access to adult deaf role models
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What to do
Advocate
• Encourage the realization of Healthy People 2010 goals on disparities in research and health for people with disabilities
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Take Home Messages
• Childhood healthcare experiences influence adult perspectives
• Adults report limited access to health information
• Adults report limited access to healthcare communication
• Disparities exist in research and health
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Steven Barnett, MD Assistant Professor, Department of Family MedicineCo-Associate Director, National Center for Deaf Health ResearchUniversity of Rochester
Family Medicine Research Programs 1381 South Avenue Rochester, NY 14620 tel: (585) 506-9484 ext 110 tty: (585) 461-4902 fax: (585) 473-2245 [email protected]
Presented at the Early Hearing Detection and Intervention Conference, Atlanta (March 3, 2005).