Mental Health and Health Illiteracy among the Deaf The

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Mental Health and Health Illiteracy among the Deaf The Powered By Docstoc
					Mental Health and Health Illiteracy
 among the Deaf: The Distressing
             Reality

        Michael McKee, M.D.
           June 12, 2009
                     Overview
•   Characteristics of deaf linguistic minority
•   Health literacy
•   Deaf research activities
•   Mental Health Disparities
•   Strategies to Reduce Disparities
•   Conclusions
               Deaf ASL Users
• Linguistic minority community:
   – Share language and culture (same as other minority
     communities (Padden & Humphries, 2005)
   – Deaf group communicates in American Sign
     Language (ASL)
   – Deaf group shares the values of Deaf Culture
   – Hearing loss is a cultural identity not a disability
   – Medically underserved due to language barriers
                Deaf Individuals
• Among individuals with hearing loss
  (Blanchfield, et al, 2001), they were more likely
  to be:
   –   Publicly insured
   –   Poorer (lower family incomes)
   –   Less educated
   –   Higher unemployment rate
• Same seen with other minority groups
• Deaf ASL users???
             Deaf ASL Users
• One exception to other minority groups
  Family history
• Deaf ASL users struggle with family history due
  to (Hauser, O’Hearn and McKee, in press):
  – Vertical vs Horizontal cultural sharing
  – Dinner table syndrome
  – Hearing family with no ASL fluency (95 percent of
    deaf people grow up in a hearing family)
  – Loss of incidental learning
               Poor Health Literacy
• Health Literacy: ability to obtain, process and
  understand health information that is necessary
  to make suitable health care decisions (HHS, 2001;
  Nutbeam, 2000; Zarcadoolas, et al., 2002)

   – >33% of English-speaking patients and
     >50% of primarily Spanish-speaking patients
     at U.S. public hospitals have low health
     literacy (Marcus, 2006)
   – Deaf ASL users???
                 Literacy Concerns
• ASL has no written language- English is a foreign
  language
• Lack of good educational systems for the deaf
   – Low English reading results (Allen, 1986; Traxler, 2000)
• Low English literacy (or reading) places deaf
  individuals at risk for medical complications or
  medication errors.
   – A random sample of 40 potentially harmful medications’
     guidance pamphlet revealed that they are typically written
     between the 11th and 12th reading levels (Wolf et al, 2006)
   – Incomplete understanding of medication labels may cause ~
     2% to 11% of hospital admissions in the United States (Davis, et
     al, 2006)
            Deaf Health Literacy
• No assessment tool for health literacy on deaf ASL
  users exist
• Limits health educational or interventional programs
  for linguistic minority
• Healthy People 2010
   – Removing disparities among minorities and
     disabilities
• Few existing health educational programs target deaf
  ASL users
   – www.deafmd.org
   – www.deafdoc.org
Health Information in ASL
 NCDHR
National Center for Deaf Health Research




 –   1st Deaf Health Research Center
 –   Deaf Health Survey
 –   Located at Rochester, NY
 –   Mission:
      • To promote health and prevent disease in deaf and hard-
         of-hearing populations through community-based
         participatory research



http://www.urmc.rochester.edu/ncdhr/about/mission.cfm
                                   Health Data


                              White                 African                 Deaf
                                                    Americans
    Cancer                    193.9 per             243.1 per               No data
                              100,000               100,000
    Diabetes                  23.0 per              49.2 per                No data
                              100,000               100,000
    Infant Mortality          5.7 per 1,000         13.3 per 1,000          No data
                              live births           live births
    Adult                     70.2 %                52%                     No data
    Immunizations
Source: www.cdc.gov
*http://www.urmc.rochester.edu/ncdhr/information/documents/GallyPresentation11-7-07REV_000.pdf
              Deaf Health Survey
• Deaf Health Survey                                   Adjust
                                                        sign
  – Adapted from Behavioral           Progress bar
                                                       window
                                                        size
                                                                     Adjust sign
                                                                       window
                                                                                       Survey
                                                                                       section    Adjust
                                                                                                               Quit
                                                                                                              survey
                                                                                                 text size
    Risk Factor Surveillance
                                                                     background          title                at any
                                Touch “x” to                                                                   time
                                close sign

    System (BRFSS) from         window


    CDC                        Touch tab
                               to change
                               sign model

  Measures:
                                                                                                                      Green
                                                                                                                    indicates
                                                                                                                      choice
                                                                                                                    selected.
  – Health risk behaviors                                                                                             Touch
                                                                                                                     again to
                                                                                                                    de-select

  – Preventive health                 Captions

    practices                         based on
                                        back-         Touch “x” to
                                                                           Letter
                                                                         connects
                                                                                            Touch to
                                                                                                         Touch to
                                                                                                         advance
                                     translation     close caption                          return to
                                                                                                          to next
  – Heath care access
                                                                         video with           prior
                                                        window                                           question
                                                                        English text        question


  – Demographic data                Poster: Barnett, McKee and Samar (2008)
              Health Disparities
• Why Seen:
  –   Communication Barriers
  –   Language Barriers
  –   Low Education
  –   Low Income/Poverty
  –   Poor Knowledge of Family History
  –   Public Insurance

  – These factors are “Access” issues!
      Mental Health Disparities
• Higher rates of mental health issues due to:
  – Social isolation
  – Language barriers
  – Higher risk for emotional distress (Turner & Beiser
    1990)
  – Lack of specialized treatment approaches
                Misdiagnosis
• Deaf individuals often are diagnosed with
  incorrect or incomplete mental health diagnoses
  (Pollard, 1994)
  – Range of Axis I disorders was restricted while some
    diagnoses were deferred or missing
  – Axis II diagnoses with mental retardation was more
    common
  – Other Axis II disorders were often not ruled out by
    clinicians
 Poor Mental Health Care Access
• ~2% of deaf individuals in need of mental
  health care received the appropriate care
  (Vernon, 1983)
• Causes of poor access:
  – Language barriers limit access for deaf
  – Mistrust in mental health community
  – Few mental health staff specializing in deaf care
                  Strategies
• Encourage use of deaf friendly mental health
  centers
• Use of medical certified interpreters
• Use of telemedicine for gap areas or rural
• Increase medical staff awareness on deaf issues
• Educate community about mental health and
  how it works
            Depression and Anxiety
• DHoH have higher rates of depression and anxiety
  when compared to hearing peers (Kvam et al., 2006)
    – Norwegian postal surveys Deaf Register versus hearing
      respondents to Nord-Trondelag Health Study
    – Below are those who responded quite a bit or extremely to 3
      of the questions in the survey- a) fearful; b) hopeless; c) blue

                         Deaf                    Hearing
 Fearful                 10%                     1%
 Hopeless                21%                     4%
 Blue                    20%                     2%
       Depression and Anxiety
• Heterogeneous group
  – Those who lost their hearing after age 3 were more
    likely to experience poorer quality of life and be
    depressed than those who lost their hearing before
    age 3 (Luey et al., 1995)
• Poor knowledge of available treatments
• Mistrust of mental health professionals
       Psychotropic Medications
•   Side effects
•   Poor compliance
•   Time to effectiveness
•   Financial burdens
•   Given more often due to lack of sign language
    accessible counselors or support groups
                 Strategies
• Medications should be used cautiously
• Ensure proper diagnosing and dispensing
• Increase awareness of psychotropic medications
  to increase compliance and potential
  effectiveness
                Strategies
• Increase awareness on symptoms and treatments
  of depression and anxiety through vlogs and
  presentations
• Increase awareness on audism to increase
  resiliency and coping strategies
• Increase networking through organizations and
  deaf clubs
                          Abuse
• DHoH children are more likely to be victims of
  physical, emotional and sexual abuse (Knutson
  et al., 2004; Kvam, 2004; Sullivan & Knutson,
  2000)
  – Potential abusers seek out children with (Conte et al.,
    1989):
     • Low self-esteem
     • Poor or few good peer relations
     • Small possibilities to tell about the abusive event
                       Abuse
• Deaf children have 2-3 times higher risk than
  hearing children (Kvam, 2004; Sullivan et al.,
  1987)
  – Risk for children with disabilities is doubled
    (Chamberlain et al., 1984)
• Gender distribution Differences:
  – Sexual abuse with deaf females and males are more
    equally represented (Sullivan et al., 1987)
              Sexual Abuse
• Characteristics of Abuse (Kvam, 2004):
  – Abuser is often deaf
  – Deaf School attendance
  – Few friends at home
  – Poor relationship with parents
                  Strategies
• Set up educational programs for all students and
  staff to learn about abuse and how to report
• Provide supervision
• Encourage parental involvement
                        Suicides
• No reliable data exists yet there is suggestive evidence
  that there is increased risk of suicide among deaf
  individuals
   – deaf and hard of hearing women had significantly increased
     odds of suicide attempts compared with females (Samar &
     O’Hearn- in press)
   – Suicide attempt rates among deaf school and college students
     in the previous year varied from 1.7% to 18% (Turner, 2006)
   – Higher rates of suicidal attempts and gestures among deaf
     students at deaf only education programs (2.2% vs 0.9% of
     those mainstreamed) (Critchfield et al., 1987)
                  Suicides
• Reasons for suicide thoughts: family and
  relationship issues (Boyechko, 1992)
• Reasons for suicidal behavior: decreased social
  support (Boyechko, 1992) and more likely to be
  depressed (Turner, 2006)
  Suicide Intervention Programs
• Few Deaf education programs have suicide
  intervention programs set up (Dudzinski, 1998)
  – 31% had no guidelines to handle it
  – Many other schools had mostly administrative
    approaches (e.g. reporting the event)
                   Strategies
•   Ongoing interventional programs
•   Use ASL fluent mental health experts
•   Provide mentoring
•   Provide educational programs and talks to the
    deaf community
         Involuntary Placements
• Can be done by judges, law enforcement officials,
  physicians or mental health professionals
• Indications for doing this must include person
  demonstrating either:
   – a) a mental illness
   – b) is a harm to self, harm to others, or self neglectful
   – c) refusing examination despite explanation
• Baker Act
   – Florida Mental Health Act set up in 1971
       Involuntary Placements
• Issues with Deaf ASL users:
  – Delay in initial evaluation to determine whether
    involuntary placement is needed
  – Misdiagnosis by poorly trained medical professionals
  – Lack of interpreters qualified to interpret mental
    health settings
  – Lack of culturally appropriate or ASL fluent medical
    staff
  – Poor awareness on deaf individuals on their rights
                  Strategies
• Report improper uses
• Ensure timely evaluations
• Use medical certified interpreters or ASL fluent
  medical staff
• Increase cultural competency among medical
  staff and law enforcement
  Communication/Relationships
• Risk for deaf females with hearing male partners
• Poor coping strategies
• Little prior learned experience on how to handle
  relationship conflicts
                 Strategies
• Provide educational programs and talks on
  healthy relationships
• Encourage family members to sign even in
  private discussions
• Provide deaf mentors and deaf coaches
              Informed Consent
• Requires full understanding of:
  – Offered treatment
  – Alternatives available
  – No treatments
• Requires:
  – Cognition
  – Language access
  – Emotional stability
           Informed Consent
• Common Excuses Used by Providers:
  – “I wanted to avoid upsetting her/him some more.”
  – “She or he don’t have the mental capacity to
    understand.”
  – “The interpreter didn’t explain it well.”
  – “He or she signed the consent form.”
  – “I provided a written copy about xxx treatment.”
                 Strategies
• Have patient repeat back what was said to gauge
  comprehension
• Be thorough on all available options
• Use medically certified interpreters
• Avoid depending on written materials
                 Conclusions
• Issues:
  – Few reliable research on mental health issues among
    DHoH and Deaf ASL users
  – Poorly equipped mental health system (“one size fits
    all”) approach
  – Little recognition or awareness on deaf issues among
    health professionals
         What We Need to Do
• Gather more reliable and unbiased data on
  DHoH and Deaf ASL users
• Develop culturally appropriate interventional
  programs
• Provide better networks for deaf to tap into to
  provide social support
• Educate health professionals about Deaf needs
• Train more ASL fluent or deaf staff to handle
  mental health issues
                              Questions?
• Research:                               • Clinic:
Michael McKee, M.D.                       Michael McKee, M.D.
National Center for Deaf Health
                                          Folsom Center (Family Medicine)
Research (NCDHR)
120 Corporate Woods, Suite 350            1850 Brighton-Henrietta Townline
Rochester, NY 14623                          Road
Email: michael_mckee@urmc.rochester.edu   Rochester, NY 14623
                                          Email:
Fellowship Funding:                       michael.mckee@lifetimehealth.org
• Supported by grant T32 HL007937
    from the National Heart, Lung, and
    Blood Institute (NHLBI) of the
    National Institutes of Health (NIH)