Public health of deaf people
Johannes Fellinger, MD
Health Centre for the Deaf, Institute of Neurology of Senses and Language, Hospital St. John of God
I Introduction
Health as a state of well being in physical, mental and social meaning as introduced by the WHO in 1986 is a gift.1
However, this gift is also a great responsibility. The individual is to take care of his/her health and society is to establish a basis to promote health as for instance documented in the WHO Bangkok Charter for Health Promotion in 2005.2
According to the WHO Public Health is a social and political concept aimed at the improving health, prolonging life and improving the quality of life among whole populations through health promotion, disease prevention and other forms of health intervention.3
“Deafness might damage your health” and “The health of deaf people: communication breakdown” - as comment and editorial of “The Lancet” entitled in March 2012 (Vol. 379) - express accurately the public health care situation of deaf people. The review on “Mental health of deaf people” ends with a reversion of the slogan “No health without mental health” and emphasizes that deaf people cannot get help for mental health problems when barriers restrict access to general health care.4
Health inequities for deaf people are of increased interest in the field of public health research.5, 6, 7
Deaf patients report fear, mistrust, and frustration in health-care settings. 8
2011 the WFD Health Resources Initiative global survey shows that 80% of Deaf leaders worldwide report about great problems in access to health care.9
Although public awareness of the inequities of Deaf people is increasing, the problem itself is not new. Since the author repeatedly observed major discrimination against Deaf patients in medical settings and statements such as “Patient is deaf and dumb – impossible to take his/her history” and because of his awareness of the issues due to his father’s deafness he started a little out-patient clinic that at first focused on psychiatric problems at the hospital of St. John of God Linz in 1991. Soon, however, it became apparent that physical problems and social issues needed to be tackled as well. Therefore in 1993 the clinic was extended and started to offer multidisciplinary services for the Deaf according to the WHO’s holistic approach to health.
Other Health Centers for the Deaf was founded in Vienna as well as in Salzburg in 1999 and in Graz (Styria) in 2008. (All Health Centers except the one in Salzburg are integrated into a hospital run by the order of St. John of God. The Health Center Salzburg is part of a states hospital)
As reports and descriptions of specific public health care programs for deaf people are rare, the objective of this article is to give a detailed description of the concept of the Health Centres for the Deaf in Austria.
II The main objectives of a Health Center for the Deaf are:
1. to examine and treat Deaf patients in primary care who are suffering from acute and chronic illnesses including mental health disorders
2. to offer personalized preventive medicine
3. to take advantage of the medical network (consultants, hospitals), the departments and institutions (e.g. radiology) the hospital is offering and which are adapted to meet the needs of the Deaf patients
4. to support Deaf people who receive in-patient care as well as medical staff (nurses, physicians) who treat the Deaf patients
5. to offer specialized mental health services (on a high professional standard)
6. to provide community health in a broader sense (social work)
7. to supply health education for the Deaf
III Structural prerequisites
· Ideally, a Health Center is affiliated to a general hospital in order to make medical services and in-patient treatments generally accessible to Deaf patients.
· The methods and procedures meet the needs of the Deaf. Deaf patients can arrange their appointments via text message, e-mail, fax or video chat.
· Protecting the patients’ privacy is of utmost importance (giving patients a chance to sign in areas where the communication cannot be "overlooked” by others).
· According to Deaf patients’ needs, they always get informed visually or personally about how long they will have to wait.
· Good lighting conditions both natural and artificial improve visual communication and lip-reading.
· Hearing aid users are offered the required technical set-up (amplifier etc.)
· In case of emergency, Deaf patients and staff will be alerted by visual alarm systems.
IV Team
According to the „one stop“-concept the Health Center wants to give its Deaf patients the possibility to see a number of specialists for medical, psychological and social issues in one visit.
A Health Center for the Deaf ideally employs a number of various specialists, such as:
- a general practitioner
- a nurse
- a psychologist
- a social worker
- a sign language interpreter
- and other professionals according to the specific profile of the Health Center (linguists, psychiatrists)
It is very important to have Deaf employees since they make sure that visual communication is used at all times. They also raise awareness for Deaf culture and offer the crucial Deaf perspective when treating Deaf patients.
V Employees in a Health Center require the following skills:
· Fluency in the national Sign Language in order to understand the Deaf patients: Experience has shown that a certain level of active language skills is acquired faster than the corresponding level of receptive language skills.Photo 1: Johannes Fellinger MD in a psychiatric setting
· A deep understanding of Deaf culture and the willingness to immerse oneself in it
· Awareness of Deaf people’s living conditions, e.g. their working conditions
· Awareness of Deaf people’s educational background, with special reference to health education
· Skills in non-verbal communication (visual information, drawings; pantomime) to also provide Deaf people who are not proficient in signed or written language with the information needed
· Awareness of the communication needs of the hard of hearing (providing good lighting conditions to facilitate lip-reading, clear articulation, etc.)
· Proficiency in using technical equipment that is designed to help people with hearing impairments (amplifier etc.)
· Understanding the patients’ needs and wishes: Employees have to be able to recognize body language indicating cautious rejection, especially in connection with the nodding syndrome. Deaf patients often nod their assent to close a difficult conversation without really understanding the issue that was discussed.
· Willingness to be part of an interdisciplinary team: Employees are part of a multidisciplinary network. They have ample opportunity to learn from their co-workers and use this expertise in their doctor-patient relationship.
· Professional cooperation with interpreters and understanding of their profession (positioning, confidentiality etc.)
· Willingness to cooperate with a Deaf relay interpreter. Often Deaf native speakers better understand Deaf patients and are understood by them more easily in difficult situations.
· The employees have to make numerous phone calls during their working day. It is of great importance that the Deaf patient present is included in the conversation by giving him/her information about the cause and content of the call.
· Working knowledge of the legal framework (anti-discrimination laws, etc.)
· Empowering patients to make their own decisions and to take responsibility for their health.
VI Aspects of implementing the seven main objectives
Objective 1: to examine and treat Deaf patients in primary care who are suffering from acute and chronic illnesses with simultaneous consideration of mental disorders
Deaf patients living in the proximity tend to more often visit the Health Center with acute medical problems. The exception, however, proves the rule. It is not rare for the Health Center to reach out to general practitioners to clear up misunderstandings resulting from problems in communication with Deaf patients.
Case study: A 56 year old Deaf man signed about complaints in the pectoral area. When taking the patient’s medical history in sign language it became clear early on that the problems were caused by an angina pectoris. He had already told his general physician about these complaints who thought the patient was suffering from bronchitis due to the fact that the signs the patient used to describe his problems were located in the pectoral area and treated him with mucolytic drugs.
Further cardiological examinations showed that the patient suffered from coronary vessel disease and needed a by-pass operation.
The Health Center offers the medical services that are usually provided by general practitioners. House calls, however, can only be realized to a limited extent.
Photo 2: Wolfgang Schatzlmayr MD during an examination
The Health Center’s general practitioner is also required to recognize physical symptoms that point to psychological disorders.
Case study: Due to stomach trouble a 35 year old Deaf woman was repeatedly examined gastroscopically in an external hospital. Taking the patients history it became clear that the stomachache started after the woman had been raped. Being able to process the trauma in psychotherapy, the stomach problems vanished quickly.
It is particularly important to be able to treat chronic illnesses in the Health Center. In order to deal with chronic illness, comprehensive patient information and a comprehensible course of treatment is crucial. Managing diabetes in Deaf patients is only one of many examples of chronic illnesses treated in the Health Center.
Case study: In the course of a preventive check-up a 30 year old Deaf woman was diagnosed with juvenile onset diabetes. Since the patient didn’t live close to the Health Center she was initially treated by her general practitioner. Due to the language barrier the therapy was limited to getting insulin prescriptions. For this reason the woman repeatedly developed hypoglycemia. Several times she was found unconscious by her 9 year old daughter who had to call the ambulance. The daughter was traumatized by these incidents. Peaks in the woman’s HbA1c showed that the long-term management of the diabetes was insufficient. However, after providing continuous treatment in the Health Center combined with a stay in a health and therapy center under instruction of the Health Center’s general practitioner, the woman’s state of health improved. Since she no longer developed hypoglycemia, a burden was also taken from her daughter.
Objective 2: Personalized preventive medicine
In the Health Center for the Deaf preventive check-ups do not only consist of the medical part per se. Check-ups also include health education and patient information based on the personal needs of the patient.. Photo 3: Wolfgang Schatzlmayr MD in a medical service
Check-ups also include health education and patient information based on the personal needs of the patient. The regular preventive health check-up (“Gesundenuntersuchung”) is the heart of all preventive medicine. This check-up gives the physician an opportunity to evaluate the general state of the patient’s health and psychosocial condition. When a patient comes to have a preventive health check-up for the first time the anamnesis includes an enquiry in the factors associated to the patient’s deafness. Furthermore, the physician takes a family history to be able to evaluate the genetic health hazards and any relevant conditions. On a regular basis, the patient is also questioned about general health hazards such as smoking and drinking habits, working and living conditions as well as the recommended vaccinations.
Following a special questionnaire, the physician asks the patient about their complaints. After that the physician clinically examines the patient (general state of health) and takes a blood sample (bloodwork, liver parameter, kidney parameter, electrolyte, lipids, blood sugar, uric acid, inflammation parameter, thyroid parameter) and urine sample.
Furthermore, patients are encouraged to visit specialists for regular routine check-ups according to the latest medical standards, e.g. gynaecological check-ups for sexually mature women every year, mammographic screenings for women aged 40 and older every year or every other year, preventive gastroscopies for patients aged 50 and older and prostate check-ups for men. Patients are also referred to ophthalmologists for basic check-ups to recognize risk factors and decreased vision well in advance. Patients who are at risk of suffering from glaucoma are advised to have ophthalmological check-ups including measuring intraocular pressure at least every other year starting when they turn 19. When patients turn 65 it is recommended that they have their vision and intraocular pressure checked annually.
In addition, patients are advised to have annual dentist check-ups. The general practitioner also trains the patients in preventive routine check-ups they can do on their own, such as monthly breast examinations for women, monthly testicular examinations for men and monthly inspection of one’s skin for moles.
The Health Center also puts great emphasis on informing patients about measures they can take to live a healthy life. Patients can avail themselves of information about a healthy diet and exercise as well as information about mental hygiene such as stress and conflict management. Support in issues concerning the working environment, relationship problems, isolation, etc. is also available. To provide information that is adapted to the Deaf patients’ needs the Health Center’s psychologists, social workers and medical staff work closely together.
Furthermore, secondary and tertiary prevention of chronic illnesses is of great significance.
Complications and risks caused by diseases such as diabetes, hypertension and hyperlipidemia can be reduced when the patient sees a physician for regular check-ups. The Health Center also offers individual and group counseling (stays in health and therapy centers) for degenerative illnesses of the musculoskeletal system, incontinence, obesity and nicotine dependence.
Photo 4: Kur IMG_0389.JPG
Objective 3: Cooperation with the hospital's departments and specialists
Being part of a general hospital allows for the Health Center to make use of the hospital's expertise and resources. Patients having appointments in the hospital can communicate with the attending physicians via sign language interpreters. Subsequently the specialists' findings can be discussed in detail with the Health Center's general practitioner if necessary. Important information can be passed on from the specialists to the Health Center's general practitioner and the other way round. In this way no information gets lost. The interpreters employed are also urged to give feedback about their appointments.