Abstract
The plight of the deaf person who has been admitted to or assessed by a mental health service has been recognised for over 30 years [1,3–6]. Even though studies have been carried out, recommendations made, and in some areas of the world, units set up specifically for the deaf, Australia is still far behind other countries in assisting our members of the deaf community, having only one assessment unit for the deaf in Sydney.
‘The unique problems presented by deaf persons with mental illness have largely been neglected because of obvious difficulties in communication.’
Communication, although important in all nursing, is an absolute necessity in psychiatric nursing [4]. When a deaf person who is mentally ill is in a psychiatric unit that caters only for the hearing, a lack of communication can cause increased anxieties for both clients and staff. The deaf client is at a disadvantage if the mental health professional has little understanding of manual forms of communication and the deaf culture [7]. This leads to difficulties in building a therapeutic relationship [8] where problems and ideas are usually discussed and clarified between client and mental health professional. Over thirty years ago, it was found that registered interpreters for mental health services needed to have an understanding of assessment procedures as well as be familiar with psychiatric terminology [1,3,7].
Denmark [1] was able to use manual methods of language and his study of the deaf hospitalised included diagnostic assessment of each person using sign language. He found many misdiagnosed and he states many symptoms of mental illness such as pressured speech, retardation of thought or thought disorder make diagnosing a deaf client more difficult. Steinberg [8] adds that the sign language used by the deaf ‘may appear psychotic, loose, and illogical to a clinician who is unfamiliar with the structure’ (p. 382).
Jones & White [9] found that diagnostic tools for psychiatric assessment for the hearing were inadequate for the deaf or hearing impaired. Denmark [1] did not state which diagnostic tools he used in his assessment of the deaf clients.
Steinberg [8] found there were too few skilled clinicians at clinics who could appropriately assist the deaf client. Most authors agree that psychiatric staff who are trained in the culture and language of the deaf would be beneficial in providing quality holistic care for the deaf client [1,4,5,7,8].
This exploratory study offered the deaf client the opportunity to describe experiences of psychiatric assessments or admissions to a mental health facility. Mental health professionals and interpreters were also given the opportunity to describe experiences. All were asked to contribute ideas on how services could be improved.
METHOD
The deaf client is defined as that client who is congenitally or pre-lingually deaf, whose first language is Auslan, the recognised sign language of the Australian Deaf Community [10] or a form of manual communication. They must have either been assessed for mental illness or admitted to a mental health setting within 12 months prior to interview and have no intellectual impariment.
‘Best practice’ policy has as its first criterion a ‘Client Focus’ which encourages and empowers clients to be involved in improving the services they use. This was incorporated into the framework of this study.
To locate deaf clients, a survey of three hospitals was carried out in the Brisbane South region and their associated mental health clinics. The hospitals included a large psychiatric facility, and two general hospitals with psychiatric units.
The researcher interviewed each client using an interpreter from the Queensland Deaf Society. A semi-structured interview of approximately half hour duration was taped and transcribed by the researcher.
Mental health professionals who cared for the deaf clients were also interviewed using a semistructured interview with these also being taped and transcribed by the researcher. Interpreters from the Queensland Deaf Society Interpreter Service who had interpreted within a mental health setting, were asked to complete a questionnaire.
Content analysis [15,16] was used to analyse the interviews and questionnaires, and similar themes were identified and compared. A focus group was then held to discuss and clarify and validate results [17] with the deaf clients. The same interpreter was requested for all interviews and the focus group. She was able to interpret for eight of eleven interviews as well as the focus group.
RESULTS
Using the key informant method, twenty three deaf people who had accessed a mental health service were located. Of these, 15 met the criteria, and eleven consented to interview. Eight had a diagnosis of schizophrenia, one had severe depression and for two, the diagnosis was uncertain, but both were on antipsychotic medication. All had hearing parents and hearing siblings, with two having deaf siblings as well. Reasons for deafness included rubella (5), genetic (1), possible radiation exposure of parent (1) and possible trauma (2). Eight had had an admission to hospital within the previous 12 months. Eleven mental health professionals were also interviewed. The average length of service in mental health was 10 years. Of 16 questionnaires distributed to full time and casual interpreters through the Queensland Deaf Society, only four completed questionnaires were returned. These contained comprehensive information.
Results of content analysis reveal major areas of concern. Information for clients and communication methods were inadequate, problems were recognised with assessment and diagnosis, a therapeutic relationship was difficult to build, and there were no practical aids provided for the deaf. Mental health professionals had little knowledge of the deaf culture, language and resources available and interpreters had little knowledge of mental health issues.
Information/communication
Auslan is a visual language with no written form [10]. Information for clients was available in leaflet form, but the English language skills of most deaf clients were not sufficient to fully understand the written word.
Communication between staff and client was often carried out by writing notes, which both the client and mental health professional found very inadequate. Most clients stated that staff did not understand the notes they had written and that they themselves did not understand the ‘big words’ or the ‘psychiatry words’. ‘If I write things down it looks a little bit like deaf language, but my sign language looks a little bit better than actually my written language.’ Staff agreed that writing notes offered only very poor results, didn't always make sense and was misinterpreted because ‘they have a different way of putting thoughts into words’.
Other methods of communication used included staff using a basic sign language or fingerspelling, clients attempting to understand through observation or lip reading, and using a family member to interpret. One family member, according to the deaf client, ‘signed like a seven year old’.
Interpreters were not used often enough and two clients who had been hospitalised waited two to four days after admission before seeing an interpreter. When an interpreter was available some meetings were occasionally found to be quite difficult due to a large gathering of staff, each wanting to ask questions. Three interviews with different clients were carried out in this way and would have caused confusion and anxiety for the client as well as being quite inefficient in any assessment.
Assessment and diagnostic problems
Deaf clients had difficulty understanding some of the words used when being interviewed. The interpreters believe that there is a huge scope for misinterpretation and that the assessment tools are not culturally appropriate, having a bias towards hearing people.
When assessing a person who may have a psychiatric illness, clinicians rely heavily on what a person is saying. By listening to what is being said, assessment of thought processes is carried out. Symptoms such as ‘looseness of associations’, ‘flight of ideas’, ‘neologisms’ and ‘auditory hallucinations’ are some which require the professional to hear what is being said by the client. One problem encountered by staff when using an interpreter was identification of symptoms.
‘… the problems we've had is that is they go ‘Oh they're just speaking gobbledegook now and we can't interpret’ and that leaves us with nowhere to go.’
‘… trying to gauge whether hallucinations are happening … we talk about “voices” and I've tried getting that concept across to this deaf client and to the interpreter and I think it just gets lost in the process.’
‘We really lose all idea of the form of thought in this process, and we have to concentrate much more on the content and it's there that I've found the deaf interpreters are very unwilling to comment on the content.’
‘… it's filtered through the interpreter, so that they reconstruct it for me in a way that makes sense to them but may not actually be what the patient's saying or in the form that they're thinking.’
These problems may occur due to the fact that although interpreters were found to be efficient and professional, it was also found that they have had no mental health training and some have had no experience with people who have a mental illness.
On the other hand, one deaf client who appeared quite well mentally because of his quiet behaviour on the ward was found to be quite unwell when an interpreter was used for an interview. ‘… we had the patient in the ward for a week and all the staff were saying how well he was and then we had the interview with the Queensland Deaf Society and we found out he was quite psychotic so, yeah, we don't know what's going on.
Staff–client relationship
To build a therapeutic relationship with a client, communication is a necessity and no staff member interviewed was fluent in Auslan although some had basic sign language skills. Even with these skills, communication was slow and often frustrating. The following deaf client's comments give the impression that any relationship between staff and client may only be very superficial.
‘The staff kind of back off a little bit …’ ‘… they didn't bother much with me.’ ‘… sometimes there's a barrier …’ and ‘… not good trust in the conversation …’
Three clients who were hospitalised had positive comments about staff helping them with their problems while in hospital, but on the whole there was a sense of loneliness, confusion, feeling sad or frightened and not understanding what was going on.
‘Nothing was explained to me …’ ‘I was confused …’ ‘I think it's awful here, people tease me’ ‘… in the hospital I was treated like a dummy’
Clients stated that an interpreter should be used but was not used often. Only two of the clients interviewed had an interpreter for all appointments.
Three of the eleven staff interviewed said they felt comfortable with a deaf client, but most admitted that there was no therapeutic relationship because of the lack of communication. Most also felt very inadequate, frustrated and apprehensive.
‘… it's enough trouble working out people and trying to communicate with people with a psychiatric disorder but having a psychiatric disorder and deafness on top of that is very hard to deal with.’
‘… they're probably as frustrated with you as you're getting with them because you're not understanding what they're trying to say’
‘And often they're quite isolated when they're in the ward because nobody bothers with them because they are deaf.’
‘… to communicate with this person you need a lot more time than what we have …’
Practical aids
There was no teletypewriter for the deaf (TTY) provided by any of the hospitals or clinics. A fax machine may have been found although not necessarily on the ward. If a client was admitted to hospital there was no way to contact family or friends. One client stated that it would have been good to be able to ‘TTY someone or phone the Deaf Society, “Could you actually come?”. All of the clients stated that it would be good for deaf people to have a TTY available although some clients felt that communicating by TTY was difficult to do with hearing people because of the language differences, and it became frustrating as messages were not understood. One client felt that it would be better for the clinic to have a TTY so that the relay officer at the Australian Communication Exchange (ACE) as a third person would not be necessary.
Hospital wards did not provide a teletext TV with subtitles for deaf clients. One client did state however that sometimes SBS had subtitles. Most clients felt lonely, isolated or bored in hospital, with reasons given including no one to talk to and nothing to do.
A major safety concern in the hospitals was that smoke/fire alarms did not have flashing lights, so if they were activated, the deaf client would not hear them.
Deaf culture, language and resources
Most staff had no knowledge of the deaf culture and Auslan. Only one staff member had a good knowledge of resources available with most being unaware of the following resources:
a teletypewriter for the deaf (TTY)
a relay service, the Australian Communication Exchange (ACE)
a ‘decoder’ or a ‘teletext TV’ for the deaf person to watch television with subtitles, and
Queensland Deaf Society groups as well as the interpreter service.
Only one client in hospital had regular trips to the Deaf Society, which proved beneficial in improving signing skills and socialisation.
DISCUSSION
When initially contacting hospitals or clinics in this study to locate deaf clients, there were no computer records of which clients were deaf. This necessitated contacting staff individually. Still, 23 deaf clients who had used mental health services were located and this study covered only those services in Brisbane South. No general practitioners or private psychiatrists were approached.
The same opportunities given to hearing people which include access to others, watching TV, and safety should be provided for the deaf clients in the way of practical aids such as a TTY, teletext TV and smoke alarms with flashing lights. Expense would need to be considered, but with downsizing of hospitals and clients being admitted to psychiatric wards in general hospitals, it would be easy to have one ward in each hospital set up that could be specifically used for deaf clients as well as hearing. If only one person required wheelchair access, a ramp would have to be provided and rooms built specificallyfor wheelchair access. Because ‘deafness’ is not seen, it can be forgotten.
The inadequacy of communication between mental health professionals and deaf clients is recognised by both. Mental health professionals need to be educated on the differences in languages, the lack of educational opportunities afforded to some deaf people and the need to have someone fluent in Auslan for all assessments and at least provided regularly for evaluation interviews with staff. At present, the interpreter service is not used all the time for visits with deaf clients. If the mental health professional feels that the written communication can be confusing and there is a scope for misinterpretation, how can the client be assessed without someone fluent in their language?
The waiting time and the cost involved were problems mentioned when accessing an interpreter. Staff had difficulty arranging for an interpreter who could be available straight away. Even in a crisis situation, the interpreter could not be arranged until the following day. With cost being a concern, many mental health professionals try to see their deaf clients without an interpreter or have organised meetings with multiple staff involved, but descriptions of these interviews indicate that there were problems for all parties.
Wright [7] and Iqbal & Hall [4] stated that there were insufficient registered interpreters for the deaf. Hyde & Power [11] found more than 1300 deaf people who used sign language living in South East Queensland but according to the Division of Community Services Development [12], interpreter services for this area were limited to a number of casual interpreters plus two full-time and two part-time interpreters employed by the Queensland Deaf Society in Brisbane Metropolitan and one full time interpreter in Toowoomba. The number of deaf clients would certainly have grown since the last survey. Fortunately, Brisbane now has four full time interpreters.
Although having an accredited interpreter is absolutely necessary for any assessment in a mental health setting, having to use the interpreter may cause problems when the interpreter has no knowledge of the symptoms of various mental illnesses. As found in this study, it can cause difficulties in assessing and diagnosing deaf clients. Even though an interpreter may be used, that interpreter may not understand fully the questions being asked by the mental health professional and this may lead to incorrect information being supplied which in turn can lead to incorrect diagnosis and admission. For those interpreters working in a mental health setting, it would be beneficial to interpreters, health professionals and clients if that interpreter had a better understanding of mental health issues, such as the various symptoms that may be encountered. Also if the mental health professional and interpreter had a pre-brief and de-brief session, it would allow for more information to be explained by both parties on cultural issues and what is to be gained from the interview. This may help with minimising any scope for misinterpretation.
Enquiries need to be made regarding the appropriateness of assessment tools used when assessing a deaf client who may be mentally ill. Sometimes the questions asked are not really understood by the deaf client and clarification is difficult. An example of this is: ‘Do you hear voices?’
With the move to community, most clients will be seen through community clinics or visited at home by a case manager. Staff who work with a deaf client need to be aware of the need to provide an interpreter for all visits. This may assist in building a therapeutic relationship between staff and client. Unfortunately, staff change often, so there is a need for ongoing education sessions on the deaf culture and language for any new staff beginning to work with a deaf client.
RECOMMENDATIONS
All hospitals with psychiatric wards and all clinics within South East Queensland need to be surveyed to gain a true indication of how many deaf clients there really are.
According to the Mental Health Statement of Rights and Responsibilities [18], consumer rights include:
The right equal to other citizens to health care.
The right to appropriate and comprehensive information, education and training about their mental health problem
The right to interact with health care providers
The right of access to relatives and friends, and
The right to have their cultural background and gender taken into consideration in the provision of mental health services
This study shows that deaf clients do not receive these. To improve services to this minority group who are doubly disabled, we need to provide:
Practical aids such as TTY or fax to allow access to others, teletext TV, especially for long term hospitalised clients, and alarms with flashing lights for safety reasons.
The opportunity for mental health professionals who are bilingual or who are trained in Auslan to interpreter status and registered through the National Accreditation Authority for Translators and Interpreters (NAATI), to work with deaf clients.
Information for clients in a culturally appropriate language. As Auslan is a visual language, information could be provided on video, combining the knowledge of the deaf clients, the interpreters and the mental health professionals. Information would need to cover the Mental Health Act, Rights and Responsibilities and some mental illnesses.
Assessment tools that are culturally appropriate. The same parties as above could investigate what tools are used elsewhere.
Information for staff on resources, the deaf culture and language. This could be provided through education sessions, inservice or information packages.
Training in mental health issues for interpreters.
Auslan has been officially recognised in the National Policy on Languages [13]. In the Australian Language and Literacy Policy [14] it states: ‘It is now increasingly recognised that certain deaf people constitute a group like any other NESB group in Australia’. Although listed in the Non English Speaking Background (NESB) documents, services for the deaf are provided through the Queensland Deaf Society.
Queensland Health have implemented strategies in the NESB Mental Health Policy Statement [2] to ensure that the diverse needs of the Queensland population are appropriately provided. These include:
cross-cultural awareness and use of interpreter training
the training and use of bilingual health care providers
development of services for NESB people
NESB mental health workers where necessary
training for interpreters to work in mental health settings
education for NESB people on mental illness and services
provision of culturally appropriate community support services
development of appropriate information and resource materials
involvement of NESB consumers and carers in development, monitoring and evaluation of services.
These strategies are also applicable to the deaf community and could be implemented to fulfil the above recommendations. As the NESB Mental Health Policy Statement [2] offers training to interpreters for work in mental health settings and it would be beneficial to Queensland Health if the interpreters from the Queensland Deaf Society Interpreter Service were included in these training sessions.
Ideally, it would be beneficial for Community Mental Health professionals who are fluent in Auslan to coordinate care for deaf clients and to work in conjunction with the deaf clients themselves and the Queensland Deaf Society Interpreter Service, to improve services for this minority group and to ensure that their special needs are met. With one in five of the general population developing some form of mental illness at some stage in their life, the promotion of mental health among the deaf community should also be encouraged.
Acknowledgements
Many thanks to the Rosemary Gray Nursing Scholarship Fund who provided funds for this project. Also my thanks to the Queensland Deaf Society and the Queensland Centre for Schizophrenia Research for their support.