ESCAP 2017 SYMPOSIUM: PSYCHIATRIC CARE OF DEAF ADOLESCENTS
Deaf children with mental health problems have a harder time than their hearing peers. Before a therapist gets a chance to look at their disorder, another doctor may want to first cure their deafness. "A paternalistic view that denies the deaf person's identity", says professor Karen Goldberg (University of South Florida), who stands up for the improvement of psychiatric care of deaf and hard of hearing children and adolescents.
Nyle DiMarco and Peta Murgatroyd dance to The Sound of Silence.
DiMarco was born deaf and uses American Sign Language.
The next pitfall for these patients will most likely be communication trouble: the psychiatrist does not speak their language and chances are that they will be misunderstood. This overcomes young patients – at least in Europe – in a context of low budgets and very few specifically trained professionals. The European Society for Mental Health and Deafness (ESMHD) held their 6th world congress in Belfast, September 2014, including several topics on children and adolescents, but has been invisible since. "Our Belfast congress was successful despite the low budget. Unfortunately, our service provider then pulled the plug from our website, without notice. We hope to be online again very soon", says ESMHD president Dr Ines Sleeboom-van Raaij, noting that southern European countries seem to suffer most from budget cuts. Dr Ana García (Madrid) and Dr Nora Olazabal (Bilbao) say they indeed still feel the scantiness of the financial crisis. Nevertheless, they are optimistic about reinstalling international collaboration.
Facts on the young deaf and mental illness justify the aims and goals of the Spanish and American team that presents the symposium Psychiatric care of deaf and hard of hearing adolescents at the ESCAP 2017 Congress in Geneva. Deaf children are more likely to experience mental health issues – recent European figures say 30 to 50 per cent more likely. Communication is a big issue for deaf families, and the developmental pathways for deaf children appear to differ significantly from their hearing counterparts. This needs to be properly addressed for mental health treatment to be effective.
Deaf and hard of hearing children deal with specific mental health problems. Delayed development of language is the first to be mentioned while discussing the issue with professor Goldberg and her Spanish colleagues from the University Hospital Gregorio Maranon (Madrid) and the Basurto Hospital (Bilbao), who will be joining the 2017 ESCAP Congress in Geneva to present their symposium on psychiatric care of deaf adolescents. "Language deprivation has secondary consequences on interpersonal relationships, attachment and on recognizing emotional expression and general control over emotions. Language is a really important foundation for the development of the child's personality. Not sharing the oral language puts you outside of the world around you", says Nora Olazabal (Bilbao). "These children often feel like they are a minority within their family."
Goldberg: "It is remarkable that many deaf children know very little about their family history. They simply miss out on the accidental conversation on those subjects. If you do not have language, you simply don't know how to modulate your emotions and the longer that goes, the more it will become pathological."
This basic issue for deaf children implicates difficult comorbid diagnostics for mental health specialists. They regularly come across parents who voice the dilemma like: How do I know this is deafness, and not ADHD or some other mental health problem? Goldberg says she tends to answer this question with a smile, by the perspective that it is probably a little bit of both. "But the first real recommendation for the environment of deaf children has to be: learn the sign language."
"Sign language is a real language, with its own grammar and syntax, history and beauty. It is a beautiful artistic expression. But the view still is, that a child cannot be successful unless it merges into the hearing world. Nyle DiMarco is an example. He was deaf all of his life, he communicates with American Sign Language and won the Dancing with the Stars contest. He does not hear any of the music, but his dancing is more perfected than the performances of many hearing competitors. He now is a role model for the deaf community, showing that deaf people using sign language can shine like any other star."
Goldberg refers to a colleague who is a deaf mental health therapist, refusing to use modern technology to simulate hearing. She says: "This is who I am, this is how I was meant to be: a successful person, born deaf." So she has a very strong deaf identity. Worldwide there seems to be a strict division between the deaf communities who choose to live with sign language only, and the ones who think that it would be better for their educational development to use technical devices, such as cochlear implants." Professor Andrew Solomon (Columbia University) praised the values of deaf culture, and describes this division as the vertical, technological identity versus the horizontal, social identity (Far From the Tree: Parents, Children and the Search for Identity, 2013).
Goldberg: "When a child is born deaf to hearing parents, they often have access to the medical information first. They will be offered cochlear implants or other medical solutions, and there will be not as much information given to them about the full choice: you are not obliged to do implantation, you can raise your child without the implant, learn sign language and support your child with educational programmes for the deaf, such as NTID in the Unites States. We have to make child psychiatrists and paediatricians aware that this choice exists – they need to be educated too, being used to this very strong medical model, that seems to prescribe: 'this is a disability and it needs to be fixed.' They ought to know that members of the deaf community tend to view deafness as a difference in human experience rather than a disability or a disorder. It is interesting to see how a lot of children with cochlear implants start to reject the implant when they become older, and embrace their deaf identity."
Youngsters who are deaf or hard of hearing have less access to precise diagnosis if the therapist does not speak 'their language'. Goldberg: "A young man was recently referred to me with a diagnosis of schizophrenia and psychosis. But when I saw him, it was so clear to me that his problem was in the autism spectrum. His first doctor missed that because he or she poorly understood this patient. But in general, and more importantly, mental health therapists need to understand that you cannot just apply what you know from the DSM and evidence-based research and plop it on top of the deaf. In the specialized education for child and adolescent psychiatrists, we are implementing more and more specific training on diagnoses for deaf children. It is not common practice yet, but it is getting better. In Florida for example we have started working with actors to practice interview techniques, focused on people with special needs. That could be somebody who is in a wheel chair, somebody who is blind, but also someone who is hard of hearing."
Improvising special training
Ana García (Madrid): "In Spain, the universities unfortunately do not have specific psychiatric courses yet for working with deaf children. But we do our best by improvising special training for interns, guided by the two institutes – in the Basque country and in Madrid – who have experience with deaf and hard of hearing patients. In my opinion, the best in class within Europe must be the United Kingdom, where they run fantastic programmes for deaf children. We regret that an older generation of pioneer experts have recently retired in some European countries – France, Sweden, Finland for example – and we have difficulties to continue the services and secure the knowledge that was developed by these wonderful people. In Spain, OK, we have services in Madrid and Bilbao – but there is no sense in asking a child who is 400 kilometres away to come over for a one-hour session." Goldberg: "We share the problem of low-density care with our European colleagues. More child psychiatrists need to be trained, and we must develop tele-psychiatry. Both for the United States and Europe. And I am not even mentioning the problem of licensing between different states and countries, and the different oral and sign languages in all of these areas." Olazabal: "The effects of the financial crisis on our services are also worrying us, and is still standing in our way to develop better international collaboration in providing mental health care for deaf young people. Investments must be made and money is always an issue. Mental health professionals do get more interested and aware of the needs of deaf children, but progress is slow. We are planting little seeds, so to speak, that we hope will become big trees when we are not there anymore."
Reinstalling international colaboration. From the left: Ana García PhD (University Hospital Gregorio Maranon, Madrid), Nora Olazabal MD (University of the Basque Country, and the Department of Psychiatry at Basurto University Hospital, Bilbao), Verónica Pousa, psychologist (Basurto University Hospital, Bilbao), and professor Karen Goldberg MD (University of South Florida, Tampa).
Professor Karen A. Goldberg MD is the director of the department of Deaf mental health at the University of South Florida (Tampa, USA). Goldberg is one of the very few child psychiatrists who treat children directly with American Sign Language (ASL) without an interpreter. With the Florida School for the Deaf and Blind, and the Blossom Montessori School for the Deaf she is developing a tele-psychiatry programme to increase the availability of therapy for deaf children and to limit their obligation to often travel for hours in order to attend. With the National Association for the Deaf, she also works on the development of mental health programmes for children and adolescents. Goldberg co-chairs the Deaf and Hard of Hearing Committee at the American Academy of Child and Adolescent Psychiatry (AACAP).
Publications by Karen Goldberg and Nora Olazabal.
Data Gathering Bias: Trait Vulnerability to Psychotic Symptoms? Catalan A, Simons CJ, Bustamante S, Olazabal N, Ruiz E, Gonzalez de Artaza M, Penas A, Maruottolo C, González A, van Os J, Gonzalez-Torres MA – PlosOne (2015).
Child Interaction Therapy with Deaf Parents and Their Hearing Child: A Case Study. Armstrong, K., David, A. & Goldberg, K. Parent – Clinical Case Studies (2013).
Selection of other articles on child and adolescent mental health and deafness.
Understanding Etiology of Hearing Loss as a Contributor to Language Dysfluency and its Impact on Assessment and Treatment of People who are Deaf in Mental Health Settings.
Crump CJ, Hamerdinger SH. in Community mental health journal (2017).
Psychometric Properties of the Strengths and Difficulties Questionnaire and Mental HealthProblems Among Children With Hearing Loss.
Niclasen J, Dammeyer J. in Journal of deaf studies and deaf education (2016).
Akram B, Munawar A. in JPMA – Journal of the Pakistan Medical Association (2016). Open access.
Preliminary findings on associations between moral emotions and social behavior in young children with normal hearing and with cochlear implants
Lizet Ketelaar, Carin H. Wiefferink in European Child & Adolescent Psychiatry (2015). Open access.
Motor performance and correlates of mental health in children who are deaf or hard of hearing.
Fellinger MJ, Holzinger D, Aigner M, Beitel C, Fellinger J. in Developmental medicine and child neurology (2015). Open access.
Emotional and behavioural difficulties in children and adolescents with hearing impairment: a systematic review and meta-analysis
Jim Stevenson, Jana Kreppner, Hannah Pimperton in European Child & Adolescent Psychiatry (2015). Open access.
Mental health problems in adolescents with cochlear implants: peer problems persist after controlling for additional handicaps.
Huber M, Burger T, Illg A, Kunze S, Giourgas A, Braun L, Kröger S, Nickisch A, Rasp G, Becker A, Keilmann A. in Frontiers in psychology (2015).
Mental health of deaf and hard-of-hearing adolescents: what the students say.
Brown PM, Cornes A. in Journal of deaf studies and deaf education (2015).
Behavioral problems in school-aged hearing-impaired children: the influence of sociodemographic, linguistic, and medical factors
Stephanie C. P. M. Theunissen, Carolien Rieffe in European Child & Adolescent Psychiatry (2014).
Characteristics of children and adolescents in the Dutch national in- and outpatient mental health service for deaf and hard of hearing youth over a period of 15 years.
van Gent T, Goedhart AW, Treffers PD. in Research in developmental disabilities (2012).
Referrers' use and views of specialist mental health services for deaf children and young people in England.
Beresford B, Clarke S, Greco V.in Journal of Mental Health – Abingdon, UK (2010).
Comparison of the prevalence of mental health problems in deaf and hearing children and adolescents in Australia.
Remine MD, Brown PM. in The Australian and New Zealand journal of psychiatry (2010).
Mental health and quality of life in deaf pupils
Johannes Fellinger, Daniel Holzinger in European Child & Adolescent Psychiatry (2008).
Reading the signs: impact of signed versus written questionnaires on the prevalence of psychopathology among deaf adolescents.
Cornes A, Rohan MJ, Napier J, Rey JM. in The Australian and New Zealand journal of psychiatry (2006).
Gilles de la Tourette Syndrome in a child with congenital deafness
S. Dalsgaard, D. Damm, P. H. Thomsen in European Child & Adolescent Psychiatry (2001).
"In terms of access to mental health care, deaf and hard of hearing individuals struggle because providers are not aware of how to meet their needs", says Karen Goldberg. "At best, the issue is lack of awareness of how to meet the need and educating fellow psychiatrists would go a long way in providing optimal services to deaf and hard of hearing individuals who suffer from mental illness."
"Many physicians and mental health providers do not understand the complexities of this community and how to work with sign language interpreters, how to provide mental health service in a manner that is both culturally and linguistically appropriate for the patients. Level of trust is an integral component of any doctor-patient relationship and communication is the key to that dynamic. Physicians who are committed to treating deaf patients need to appreciate the complexities and heterogeneity of this group as well as how mental illness presents and how best to treat them."
"It is important to educate fellow psychiatrists in the US and throughout Europe on the unique needs of this community. Deaf individuals suffer mental illness at rates that are comparable to hearing individuals, yet access to care is severely limited. There is much misunderstanding among physicians on how best to meet the needs of deaf and hard of hearing individuals."
A cochlear implant (CI) is a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf or severely hard of hearing in both ears; as of 2014 they had been used experimentally in some people who had acquired deafness in one ear after learning how to speak. Cochlear implants bypass the normal hearing process; they have a microphone and some electronics that reside outside the skin, generally behind the ear, which transmits a signal to an array of electrodes placed in the cochlea, which stimulate the cochlear nerve. People who use cochlear implants describe the experience of sound as being "metallic" and they tend to have problems differentiating background noises.
Sound and Fury is a documentary film released in 2000 about two American families with young deaf children and their conflict over whether or not to give their children cochlear implants, surgically implanted devices that may improve their ability to hear but may threaten their Deaf identity – often spelled with a capital letter-D by insiders. Available on dvd.
Here and Now is an award winning documentary production by filmmaker Irene Taylor Brodsky. She aims her camera at her own life to capture the remarkable transformation of her deaf parents, who decided to undergo a life-changing procedure to restore their hearing by using modern technology, after spending 65 years in silence. The documentary introduces the couple's personal histories – childhood years learning to communicate in a special school, experiencing the stigma surrounding deafness in mainstream high schools, and having meaningful careers in the Deaf community at the National Technical Institute for the Deaf. Paul was a pioneer in development of TDD (telecommunications device for the deaf) which is also known as TTY.
Chronicling her parents' experiences over their first year of having sound in their lives, Brodsky tells a deeply personal tale.
The documentary is distributed by HBO; also available on dvd.
An immersive, experiential film about the deaf world is Life and Deaf, with its unique humour and culture – a world which most of us rarely encounter. The film is in BSL: British Sign Language. There is no score, no commentary, and none of the conventions of normal film-making. The story features Abigail, who has just turned 30 and is about to make one of the biggest decisions of her life. She is considering undergoing surgery to have a cochlear implant fitted to help her deteriorating hearing, and also to better connect with her hearing friends. Abigail wants to be part of both worlds. But it's a controversial decision for her family, who proudly trace their deaf heritage back eight generations. Downloadable at the BBC Store.
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