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Disability, Deaf, and… Cochlear Implants: Psychosocial Health

Disability, Deaf, and… Cochlear Implants: Psychosocial Health. Irene W. Leigh, Ph.D. Gallaudet University May, 2012 5 th World Congress on Mental Health and Deafness Monterrey, Mexico. Information excerpted from:.

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Disability, Deaf, and… Cochlear Implants: Psychosocial Health

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  1. Disability, Deaf, and… Cochlear Implants: Psychosocial Health Irene W. Leigh, Ph.D. Gallaudet University May, 2012 5th World Congress on Mental Health and Deafness Monterrey, Mexico

  2. Information excerpted from: • Christiansen, John B., & Leigh, Irene W. (2002/2005). Cochlear Implants in Children: Ethics and Choices. Washington, DC: Gallaudet University Press • Leigh, I.W. (2009). A Lens on Deaf Identities. New York: Oxford University Press. • Leigh & Brice (2003) Chapter: The visible and the invisible. (InDiversity in Human Interactions) • Other research sources as cited

  3. Topics for today • Disability frameworks • Deaf and Disability: Uneasy coexistence • Audition and Deaf Gain • Brief demographics on CI use. • Review: Parent perceptions of the CI • Recent research on psychosocial aspects • The deaf community: Changing perspectives about cochlear implants. • Ethical Issues

  4. Disability Statistics • Approximately 12% of the world’s population, including developed and developing countries (Mont, 2007, World Bank) • “… largest minority group in the US”(Olkin,1999). • Roughly 15 to 20% • Likely also in Australiahttp://www.disabled-world.com/disability/statistics/disability-statistics-australia.php • Approximately 3,958,300 • Roughly 20% of the Australian population • Roughly 20 per 1,000

  5. Implications…. • How to define disability? • Causes problems in surveys • Often within lower socioeconomic levels (Mont, 2007) • Risk of abuse greater • True also for deaf/hard of hearing (Schenkel, Rothman-Marshall, & Burnash, 2010) • Challenge for professionals trying to include disability within the diversity spectrum (Leigh, Corbett, Gutman, & Morere, 1996; Leigh & Brice, 2003; Zimbardo, 2002)

  6. WHO Disability Definition: Umbrella Term • Impairment: Problem in body function or structure • Activity limitation: a difficulty encountered by an individual in executing a task or action • Participation restriction: a problem experienced by an individual in involvement in life situations. • Disability = complex phenomenon, reflecting interaction between features of a person’s body and features of the society in which he or she lives • http://www.who.int/topics/disabilities/en/

  7. Ethics: Ideal versus Reality • In the American Psychological Association Code of Ethics: • Race/ethnicity mentioned 16 times (Fisher, 2003). • Disability mentioned 19 times (Fisher, 2003). • The reality: • Much less attention for disability, even within academics • But each and every aspect of diversity requires sensitive awareness and understanding.

  8. Attitude and Bias • When we think about disability, how aware are we? • The general public: • Typical perceptions of disability? • General meaning of disability? • Concerns about becoming disabled? • How does it impact interaction with persons with disabilities? • Video analog project(Kemp & Mallinckrodt, 1996) • Psychologists considered different themes if clients were identified as having a disability

  9. So… • “Most basic to the identification of character through disability is the way in which physical & cognitive differences have been narrated as alien to the normal course of human affairs.” (Mitchell & Snyder, 2000, p. 5) • Which results in marginalization…. via • Daily life discrimination • Limited use of Universal Access • Tokenism • (Davis, 1995,1997; Daughtry, Gibson, & Abeles, 2009; Linton, 1998)

  10. Internal Models of Disability • These internal models influence attitudes and ethical stances. • Important for: • Service providers • Teachers • General Public • Persons with disabilities

  11. The Moral Model • Longest history • Punishment for transgressions • Because one is “special”

  12. Medical Model • Person is impaired • Medical problem is to be fixed or cured • Consequence: Reducing visibility of impairment • Disability identity is implied as negative • Disability is therefore abnormal • Issue of genetic treatment and concerns regarding eugenics

  13. Social Minority Model • Different centers of normalcy • Focus on environment that reinforces or minimizes disability • How accommodating is the environment? • Example: Theater • Impetus for Disability culture and Deaf culture • Differences and similarities between the two?

  14. Role of Technology • Emancipation or Oppression? (Sheldon, 2005) • Need to assess: • Goal of technology • Specific technology • Suitability to individual’s life style & world view • Realistic understanding of potential and limitations

  15. Moving on to “DEAF” What do we know?

  16. Prevalence of Hearing Differences • Over 275 million globally (WHO, 2004, http://www.who.int/mediacentre/factsheets/fs300/en/index.html) • 70 million culturally Deaf (wfdeaf.org) • Hearing impairment = most common disability • More males than females • http://ije.oxfordjournals.org/content/28/2/247.full.pdf+html

  17. Deaf and Disability • Prior to 1970s • Acknowledged disability as inability to hear (Baynton, 2008) • 1970s on… • Uneasy coexistence due to reframing as linguistic minority/ethnic group & society denying language access (Burch & Kafer, 2010) • Barriers are language barriers • Different from barriers for hearing people with disabilities

  18. Distinction between biological reality of disability and social construction of disability… • Depends on society arrangements… • Some disavow disability identity but pragmatically endorse it due to need for accommodations • Slightly over 1/2 of 200 culturally Deaf British acknowledge having a disability (Dye, et al., 2001).

  19. On to the Cochlear Implant First…. Some statistics….

  20. Statistics • 1957: First CI (France) • 1977: First CI in children (France) • 1990: 5,000 CIs; 90% adults • 2010: 200,000 CIs worldwide (FDA) • 120,000 from Cochlear Limited • 50% children under 18 (3 major CI companies, Archbold& Wheeler, 2010; Nussbaum, 2009)

  21. Latin America & Spain (Berruecos, 2000) • CI programs in Mexico, Argentina, Colombia, Ecuador • CI groups in Panama, Ecuador, Brazil, Mexico, Columbia, Argentina, & Spain… • Mexico • Small numbers, perhaps in the hundreds? (http://findarticles.com/p/articles/mi_m0EIN/is_2006_August_14/ai_n26957362/) • In the U.S.: • Approximately 41,500 adults; 30,000 children (half the children are under age 5, Nussbaum, 2009).

  22. Majority in industrialized countries: • Australia: Between 50% and 80% of profoundly deaf children have CIs(Hyde & Power, 2006). • Sweden: 95% of children are now implanted (personal communication,2 Swedish professionals, March 2012; 80% Foster, et al, 2003) • Consistent growth of students in the mainstream versus specialized settings(GRI, 2008) • About 7,000 (growing number) now have bilateral implants, many under age 18 (Archbold &Wheeler, 2010; Nussbaum, 2009) • The # of users is less than the # of recipients: How much less is unknown.

  23. How Society Perceives the CI • “Miracle cure” for the tragedy of deafness • Common conceptualizations: • Deafness is a disability to be fixed • (Disability model). • Medical break-through • Leaving the “prison of silence” • Individuals with CIs will now be part of the world, and not set apart.

  24. Socio-cultural model of deafness Being deaf = a way of life, a cherished difference, not a disability. • Deaf culture = vibrant culture that helps deaf people connect with the world • Refutes notion of “a prison of silence.” • Use of a signed language • Traditionally, many attended residential schools. Today, more in mainstream education. • Perhaps 500,000 in the U.S. (Mitchell, Young, Bachleda, & Karchmer, 2006), 7,000+ in Australia (Johnston, 2004; Carty, 2006), 6,000 in Panama (Parks, Williams, & Parks, 2011)

  25. Findings from 2 Research Projects • Goal: To understand parent perceptions on a number of issues. • 1. Gallaudet Research Institute (GRI ) (Spring 1999): • 12-page questionnaire on parent perceptions about the diagnosis of deafness, decision to get the CI, & observations of their children, distributed to 1,841 parents of children with CI in the US; 439 returned • (24%, good response rate for mailed surveys).

  26. 2. Christiansen & Leigh • Summer & Fall 1999: 56 mostly audiotaped interviews with parents of 62 children with CI (& one without) in 15 states & Australia • Respondents selected from those returning the GRI questionnaire and several other sources. • Age range: 2 - 20 years; • Age at implantation: 15 months - 17 yrs. • “Typical” child: about 4 years old at the time of the implant, had used the CI for about 4 years. • Typical age now younger….

  27. Discovering their child is deaf • Parents often had a difficult time determining that their child was deaf. Many were quite upset at diagnosis. • Many parents complained about insensitive audiologists & pediatricians. • Current role of UNHS is still evolving: • Problem of follow-up (CDC, 2003) • Also, issue of progressive hearing loss • Limited testing facilities in developing countries

  28. Searching for “solutions” • Parents were starving for information. • One parent said: “The scariest part of it is that you don’t know what you’re supposed to do next…there is no road map.” • Help from other parents and from early intervention pre-school programs were seen as very helpful. • Confirmed by Hyde, Punch, & Komesaroff, 2010

  29. Reasons for implanting • Most parents of CI children did not decide quickly on the CI. Much-soul searching. • Still true today: Hyde, Punch, & Komesaroff, 2010 Parents reported various reasons for getting the CI, such as: • Safety (C & L) • Opportunity to learn spoken language (C & L) • Having more “options” in the future. (C & L) • Ease in development and use of spoken language: 52% (GRI) • Child’s safety/environmental awareness: 25% (GRI)

  30. Parent expectations & reality (Hyde, Punch, & Komesaroff, 2010) Based on a sample of 247 parents, realistic information was provided by professionals Often relatively high expectations regarding outcomes, mostly met A tenth of the sample of 247 parents: Not met

  31. Contact with the deaf community: Pre-implant • The majority do NOT meet with deaf adults. • Latin America: • Deaf community opposition to cochlear implants (Mont, 2007; Parks, Williams, & Parks, 2011) • Out of 121 cochlear implant centers in the U.S. providing feedback on information given to parents: • Only 45% provided information on Deaf culture and American Sign Language (Berg, et al., 2007)

  32. The post-implant deaf child:Sign communication • Signing, especially with voice, is compatible with a CI. • Is a part of the child’s communication needs (along with speech and listening therapy). • Children with Cis do sign at home and school. • One parent: “I can never see [my implanted daughter] not being dependent on an interpreter. If she’s in a big auditorium with people, or even if she’s sitting in the front row…to catch all of it, she’s gonna need sign language.”

  33. Current Observations: • More parents than expected sign with their children to ensure foundation for language & speech (Paludneviciene & Leigh,2011; Watson, Hardie, Archbold, & Wheeler, 2008; Yoshinaga-Itano, 2006; Zaidman-Zait, 2008) • 30% of sample of 247 parents and 151 teachers: • Valued use of Auslan or signed English for personal, social, & academic development (Hyde & Punch, 2010) • 142 British parent responses to questionnaire (Watson, Hardie, Archbold, & Wheeler, 2008): • Conclusion: Tendency for children to lead change to increased spoken language post-implant even when the parents continued to use signed communication

  34. Education • CI children in many different types of programs (spoken and signed), both pre- & post-CI. • Manyaremainstreamed, but virtually all of these children continue to require services of some type. • Confirmed by recent studies (e.g., Archbold & O’Donoghue, 2007; Mukari, et al., 2007)

  35. From the GRI study: • Special support services (Many receive multiple services): • Sign language interpreting 40% • Teacher aide in the classroom 37% • Resource room help 28% • Media captioning (closed/real time) 24% • Itinerant teacher support 22% • Remedial work/tutoring 17% • Classroom amplification 16% • Personal assistive device 15% • Oral interpreter 13%

  36. Changing of the Tide • Example in Bergen County, New Jersey, USA • Elementary Schools: Listening & Spoken Language Programs • In 1997, 16% of deaf children enrolled • In 2009, 73% • High Schools • 1997: None • 2009: 68% • (Treni, 2009)

  37. Social & Psychological Concerns • Most parents felt family communication improved after the CI • Not many psychological concerns were reported. • Many parents are comfortable if their child socializes with both deaf & hearing peers. • Some idealize their child being with hearing peers.

  38. Academics • Students with CI generally better academically than those without CI(Fagan, Pisoni, Horn, & Dillon, 2007; Geers, 2006; Marschark, Sarchet, Rhoten, & Zupan, 2010). • Still not equal to hearing peers, very similar to hard-of-hearing children (Marschark, Sarchet, Rhoten, & Zupan, 2010;Vermeulen, Bon, Schreuder, Knoors, & Snik, 2007) • Study in England : Hearing aid group in deaf programs better than CI group in the mainstream (Harris & Terlektsi, 2011) • Caveat: Need to consider environmental support as well as variability in individual characteristics, e.g., personality, resilience, cognitive abilities, etiology(Karchmer & Mitchell, 2011; Stinson & Kluwin, 2011; Zand & Pierce, 2011)

  39. Recent Findings: Socialization • Parent perceptions: • CIs positively help but do not guarantee age-appropriate socialization with hearing peers. • Bat-Chava & Deignan, 2001; Bat-Chava, Martin, & Kosciw, 2005; Chmiel, Sutton, & Jenkins, 2000; Christiansen & Leigh, 2002/2005; Hyde & Punch, 2011; Kluwin& Stewart, 2000; Nicholas & Geers, 2003; Percy-Smith, et al., 2006

  40. Observational Studies: • Children with CI playing in groups or in classroom discussion with hearing peers • Ongoing struggle, limited consistent success in group interactions(Boyd, Knutson, & Dahlstrom, 2000; Knutson, Boyd, Reid, Mayne, & Fetrow, 1997; Martin, et al., 2011; Preisler, 2007.) • One on one better than group, based on Peer Entry task observation of 10 5-6 year old children with CI(Martin, Bat-Chava, Lalwani, & Waltzman, 2011) • Longer duration of CI & higher self-esteem did better.

  41. Additional Studies • Interviews with deaf children with CI: • Ongoing communication limitations even with improved access (Hyde & Punch, 2011; Preisler, Tvingstedt, & Ahlstrom, 2005). • One study based on sociometric measure • Lower than hearing peers on prosocial behavior, higher on socially withdrawn behavior (Wauters & Knoors, 2008, note: 9 out of 18 deaf children in their study had a CI but CI per se was not studied, all had good spoken language).

  42. Psychological Health • Parent perspectives: • Improved quality of life, greater self-esteem, confidence, outgoing behavior compared to pre-CI, even though socialization problems with hearing peers still happen. • Children and adolescents with CI who participate in studies exhibit psychological health(e.g., Archbold & Wheeler, 2010;Huttunen & Valimaa, 2010; Leigh, Maxwell-McCaw, Bat-Chava, & Christiansen, 2009; Nicholas & Geers, 2003; Spencer & Marschark, 2003)

  43. Studies supporting psychosocial health • 181 children, ages 8-9, 83% mainstreamed, approx ½ = speech & sign, ½ = speech (Nicholas & Geers, 2003) • Self-report on child’s self-perceived competence • Competent, well adjusted (cognitive, physical, socio-emotional, school performance, communication) • Younger children & those using most updated speech processor rated themselves higher. • Parent report: Children are well-adjusted. • Question: Does this continue into adolescence? (Sheridan, 2008) • More problems in adolescence based on qualitative interviews (Hyde & Punch, 2011)

  44. Psychosocial Health, cont’d • U.S. preliminary questionnaire study of 57 deaf adolescents with and without CI (Leigh, Maxwell-McCaw, Bat-Chava, & Christiansen, 2009) • 26 out of 28 adolescents with CI in mainstream settings, 77% preferred spoken language exclusively • Those without CI (29) mostly in deaf settings, only 15% preferred spoken language • Both groups similar psychosocially • Self-perception, satisfaction with life, loneliness • Level of loneliness similar to normative sample • Also found in Schorr (2006)

  45. Quality of Life, continued… • University of Texas at Dallas study (Loy, Warner-Czyz, & Roland, 2009) • 150 children in 3 age groups: 4-7, 8-11, 12-16 • Age 4-7: Rated physical, social, & emotional quality of life higher than their parents did and similarly to same age non-deaf children • Age 8-11: Also positive, longer duration = + effect on perceived quality of life • Age 12-16: Parents viewed children’s school quality of life better than the child perceived it. On other survey items, both were similar.

  46. Contrary to deaf community fears, cochlear implantation does not automatically doom a child to psychosocial maladjustment. Other factors come into play for that to occur.

  47. Identity Issues • Christiansen & Leigh (2002/2005): • Small sample of adolescent & young adult interviewees with CI desired ongoing contact with the deaf community in addition to socializing with hearing peers. • Wheeler, Archbold, Gregory, & Skipp (2007): Semi-structured questionnaire interview • 29 British young adolescents with CIs, aged 13-16, in mainstreamed and specialized educational settings • Most participants flexible in terms of communication mode • Deaf identity neither culturally Deaf or strong hearing. • No clear relationship between identity status and educational environment.

  48. Questionnaire Studies: • Israeli questionnaire study of 115 adolescents (Most, Weisel, & Blitzer, 2007: • 10 had a CI • All exposed to deaf peers either in mainstream or deaf classes • Adolescents with CI = more positive attitudes than others in family climate, self-esteem, & communication • Did not significantly differ in attitudes about social status, academic achievements, Deaf culture, or identity classification (bicultural). • U.S. preliminary questionnaire study of 57 deaf adolescents with and without CI (Leigh, Maxwell-McCaw, Bat-Chava, & Christiansen, 2009, see Slide 44) • Most with CI in mainstream settings, affirmed hearing-oriented identity, but number with bicultural identity similar to those in deaf settings.

  49. Currently… • Increasing numbers of deaf students with CI attend specialized college programs for deaf students(Brueggemann, 2008; Ladd, 2007). • Lisa Herbert(2008, p. 139) “I’m grateful for the opportunities my cochlear implant offers me and I see it as completely compatible with being a signing Deaf person.” • Those deaf adults who have chosen the CI & maintained a positive Deaf identity appear happiest. Such individuals can hear quite well, speak well, sign well, and enjoy music without sacrificing their Deaf identity(Carty, 2006; Woodcock (2001/1992). • Pervasive perception of the “either-or” paradigm: either cochlear implantee or Deaf(Hintermair & Albertini, 2005)gradually becoming moot??

  50. Implications for Identity: • CIs are not necessarily creating a body of children stuck between the deaf and hearing worlds • These children can and do have a clear identity. • Most often: hearing acculturated or bicultural, meaning comfort in shifting identities.

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