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Although there has been considerable progress in the provision of health care and in the delivery of mental health services to the general population, there has always been concern that there are difficulties of access for groups such as deaf people. Unlike other minority groups, deaf people are born into majority families This may be a source of some difficulties. Most preliminary work indicates support for the view that deaf people experience greater problems in achieving mental well-being. Deaf people are a linguistic minority whose language is not well know, the position of the deaf child is often not clearly defined in the family and aspects of child-rearing which are taken for granted are often missed in deaf-hearing homes.
The result seems to be a greater incidence of mental health problems in adult life. In our society, this has led to increased facilities or care and therapy of deaf people. Such services are well-developed in international terms. Nevertheless, in keeping with the reviews of the Health of the Nation, the Department of Health is reviewing the delivery of services to deaf people. This project has bee commissioned to examine the situation of deaf people in services in the UK.
It has completed a first phase which has attempted to identify the extent of the referred mental health problems in the deaf community. In the second phase which will be completed in late 1997, the project team will be working directly with deaf people on their ideas of mental health and on their views on the services to which they have access. This will take the form of over 100 interviews to be conducted nationally. All the interviews will be carried out by deaf interviewers and will be usually conducted in sign language.
The project has support from the Department of Health, the Sign campaign and has received ethical approval from the major ethical committees who have been approached. The Directors of Social Services of 71 Local Authorities have also participated in a national survey in the first phase.
We believe the study will have a significant impact on deaf peoples mental health provision and hope that support from residential centres and deaf clubs will be forthcoming in this final part of the research.
In dealing with the question of the effectiveness of services, the people most closely involved are the Deaf people who have experienced those services, themselves. Inevitably, in an area such as mental illness, there is a significant proportion of people who are unable to express their views and who will be likely to give unreliable information even when interview is possible. At the beginning of the research project, we had no way of knowing how this group might react to interviews. The initial R&D profiles which were created gave a basis for examination of the Deaf people who were "in the system" but the means of approach and the data collected, were incomplete.
It was decided to approach the same Centres again in order to meet with residents and to discuss with them, in greater detail, the pattern of provision and how they had responded to it. Although the general aims of the study were to determine the appropriateness of services, a useful goal was to consider the use of the services by deaf individuals. It had become apparent that the route to mental health services for Deaf people might be rather different to that of hearing people. The common referral from a GP was less reliable among deaf people because of communication problems. This was likely to mean that Deaf people were more likely to be situated in inappropriate placements with incomplete servicing of their mental health needs. For this reason the first phase of the project had attempted to identify Deaf people "with mental health problems." However, although this might then appear to be a simple matter of asking them about their experiences, the general context of the lives of Deaf people and the greater incidence of language problems, even in sign language, was likely to make the techniques of interviewing of much more significance than in ordinary research studies. For this reason, great care was taken in the construction and piloting of the interviews and in the training of the Deaf researchers as interviewers.
The specific aim of this part of the work was to identify Deaf people from the R&D Profiles and to elicit from them details of their current experiences and of their satisfaction with their current provision, the services which they had experienced and the changes which they had encountered.
Observations and Conclusions
The overall picture is of adequate service as understood by the residents. However, it must be remembered that satisfaction with a service is partly dependent on the extent to which individuals can identify the range of possibilities available and make choices about whether he/she is receiving that which is best suited to needs. It may be the case that apparent resident satisfaction was also a reflection of not knowing anything different or any alternatives.
We did not discover among the residents, any awareness of ongoing therapy or counselling - though it may be that it has a local name and is not evident to the resident as a means of "treatment". There were a number of residents who were in our original list but who could not be interviewed. This left a proportion of only 1 in three in the residential homes, with a mental health diagnosis who could be interviewed. Depending on expectation this may be very worrying. It does seem likely that Deaf people have more complications in communication than do hearing people. However, the lack of possibility to interview so many, leaves us without a clear picture of the appropriateness of the service delivery. From the interviews completed, we can see the difficulties of obtaining consistent and reliable data. We believe that what we have is valid in the sense that it is truly reflective of the opinions and experiences of those in residential homes; however, it is, at times, inconsistent from one part of the session to the next.
The interview was designed to be simple in presentation and delivery, but it is obvious whenever there were open ended questions, discrepancy in response occurred. On the whole, the residents claimed to be content with the provision they received and showed the appropriate responses in being able to alert staff if something was wrong or indeed, if they wanted to leave. This positive situation may be a result of the key worker system where an individual is attached to each resident. In most cases, Deaf people liked this key person, even though the person was not Deaf. Key workers who were also resident tended to have stronger relations. A minority of those who were off-site were not liked and the Deaf person did not feel confident with him/her.
Although communication would be expected to be a major issue, Deaf residents seemed to be content when just over half of professionals (ie social workers) were likely to use sign language. This seems very surprising and may relate to the lowered levels of expectation which Deaf people in these settings have developed over time. Contact was maintained with friends, according to the respondents, and almost half went to the Deaf club. Contact was through the minicom for over one third of the respondents. This group is not made up of individuals who are severely mentally ill nor do they show severe symptoms - this group are self-selecting by communicability; others are excluded because they have difficulty in communicating. Therefore, we have created a picture of the level of provision which shows a moderate extent of dependency and mental ill-health.
Deaf residents seem satisfied but it does seem also that their expectancy level is low, particularly in terms of communication.
Although it is vital to obtain first hand information on the experiences of people within the system, it is equally important to know how the community understands the system. There has been much debate about the status of mental illness and to what extent it is related to the attitudes of society. It seems likely that there are cultural differences in mental illness and that people who are Deaf may well believe that different standards apply for those within their community. At least superficially, this is likely to be the case. Standard batteries of tests are likely to include items about whether "you speak to your neighbours" or whether "you feel isolated" or whether "you have a lot of friends in your neighbourhood" and so on. These are all questions which would produce answers which would make Deaf people seem deviant. However, the real issue is how the members of the community view the norm.
To date we have very little information on this. In effect, it introduces the concept of Deaf Wellness. The issue which arises when a community have an atypical experience in childhood is what can be expected of their socialisation. In circumstances of civil strife or war, there are effects on the children's development which may be felt for many years in the future. When Deaf children struggle to achieve interaction with significant adults then there are likely to be difficulties in adjusting behaviour to the needs of complex adolescence. When the reason for the problems in interaction are enduring ie where language is implicated, the socialisation may never occur to the level necessary for hearing norms. When a community experiences these circumstances en masse, the wellness of the community may be shifted. The expectations of the members of the community in terms of interaction may be different.
Wellness implies absence of stress, opportunities for self-realisation and satisfying life experiences. For Deaf people, these are sought out within the community and it is within that community that we should look for a view of mental health. In this part of the study we have considered the experiences and views of members of the Deaf community. There is some difficulty in specifying the target group, as the members of the community are likely to be, by definition, those who are adjusted to the community norms. The study is unlikely to reach those who are Deaf but are deviant from their own community. Many of these people will already have been referred for mental health assessment and treatment, but it is also the case that they are difficult to find (having often isolated themselves for their own community). In the end, it was necessary to use the survey of Directors of Social Service to choose areas of better provision and areas of poorer provision.
The purpose of this study was to determine the level of awareness of mental health services and to establish expectations about the nature of mental illness among members of the Deaf community in designated areas of the UK.
This part of the study has been of considerable importance. It does not in itself prove conclusive in terms of service provision and the awareness levels of the community - there were problems in the overall sampling which make this comparison difficult - however, it does indicate the level of discussion of mental illness in the Deaf community. It seems clear that although there is a sense in which Deaf people are cut off from communication and from services , there is no clear view of what those services might seek to deal with.
Deaf mental health has superficially the same indicators as hearing mental health and Deaf people identify similar adjectives to describe a state of well-being. And the types of behaviour which might be significant. However, this does not link with a concern about the need for support and the depth of the problems which may arise. Deaf people see symptoms but have not been given nor have acquired a range of descriptors and measures of the problems. The usual route through local doctors seems to be inoperable for Deaf people and discussion with friends and family simply recycles incomplete information and incomplete techniques for support.
There remains a great deal to be done to understand the nature of the problems which are apparent in the community and there is a good deal more analysis to provide what might be termed the blueprint of Deaf wellness.
The Project Components
In phase 1 four components were planned:
As an extension to the first survey of service provision, it was agreed to examine the views and experiences of deaf people directly.
Although there has been considerable progress in the provision of health care and in the delivery of mental health services to the general population, there has always been concern that there are difficulties of access for minority groups. To some extent this has been dealt with by initiatives designed to facilitate access - translation of materials, provision of community interpreters. Its degree of success varies and is affected by perceptions of mental illness in the various communities who are involved.
Most preliminary work indicates support for the view that deaf people experience greater problems in achieving mental well-being than do comparable groups of hearing people.
The arguments for the project are therefore, well-rehearsed: deaf people are a misunderstood minority with unique language needs and difficulties in access to all services and also to information about the existence of services. The deaf community tends to be isolated and downwardly mobile and community-based support is often reliant on incomplete information among community members or imposed service provision. Recent work on Deaf Health in Scotland (CDS,1997) indicates that service providers often have a different view of service initiatives and provision from that of the deaf users. Mostly, providers are more positive on the benefits and take-up than are deaf people. The responses from the latter are frequently laced with frustration and extensively illustrated by episodes of miscommunication and ineffective outcomes. Therefore the move towards needs-led resourcing is apparently irresistible. The problem is how to determine these needs.
The Key Issues for deaf people
The questions to be studied are:
The Target Groups
In this part, the aim was to build a picture of awareness of mental health problems and to determine the baseline of need and perceived relevance of the services. The choice of participants had to be made according to Directors of Social Services returns, and there are some problems identifying and then contacting 120 people and asking them to take part. The returns from Directors of Social Services (phase 1) focused on deaf sign users. However, a major problems exist for those deaf people who were denied sign as children and who may not be part of the deaf community because of diagnosed problems (ie are already in the system) or who may be withdrawn from the community (through language deprivation). The first were to be reached in the system interviews, but it is unlikely that the second group could be included at all as they were likely to be non-communicating as Gregory (1995) found.
The questionnaire was constructed, piloted and corrected. The intention was to choose 8 Local Authorities. Five of these were chosen because the returns from Social Services indicate a high level of service for those with adjustment problems and/or where there is a large institution which deals with problems of adjustment. Three other locations were chosen because only a very low level of service can be detected. In each region 15 deaf people were contacted and as many as possible were interviewed.
All of the contact and interviewing was done by trained deaf interviewers working in sign language.
The interview framework was standardised to include these components:
Suggestions for provision and improvement of services. This needed to go beyond - interpreter provision, and the requirement that all the professionals should be deaf.
It was intended that people interviewed in phase 1 in the various homes and institutions (B), would be interviewed again with a more detailed protocol more directly linked to perceptions and experiences of mental ill-health. These were chosen to be typical of the population as discovered in the first phase and 50 people were to be interviewed. The proposed sample of 50 represented around 30% of the total who have been discovered with mental health diagnosis.
Following pilot work, an interview schedule was created. Not all of the interviewees were fluent in BSL. The steering group were particularly anxious to monitor the numbers of deaf people who could be interviewed, as the numbers appeared to be considerably less than those of hearing people with a mental health diagnosis, who could be interviewed in speech.
The structure of the interview included:
Data to be collected
For the first group, the data collection consisted of an interview schedule dealing with own experiences and views on health. The purpose was to determine the interviewees knowledge of the problems of mental illness and their views on what might constitute a problem requiring help. In addition, a series of cases were described on video which were used to elicit suggestions as to how this persons problems should be dealt with. This was to highlight awareness of services. It was also designed to indicate the availability of services. Interviews were to take one hour and be completed in a convenient location either at home or at the deaf club. The GHQ-30 was administered as part of the interview.
For the second group, the aim was to obtain more detailed information on their perceptions of their own transition through the services and the problems which they faced and how they believed they could be altered. This sampling was unlikely to include the most severely mentally ill. However, it was intended that a representative sample of people who have insight into the system as it is at present, would be reached.
This phase was designed to provide
Details of the results appear in the published report.
(This is a concept which has been developed in the research work of Mary Griggs, CDS, Univ of Bristol)
The idea of deaf well-being was a logical development of the research on deaf people which had been a part of the framework for treating deaf people. Most of the research confirms the deviance of deaf people from the norm. Indeed, often the main reason, which is put forward for studying deaf people is their perceived deviation from the norm.
In the past, deaf people were assessed as abnormal and the resulting patterns were attributed to their state of lack of language. Not surprisingly, this view placed the deviance in the person of the deaf individual. The deaf person had a deaf personality - a surdophrenia. This was thought to lead directly to problems in life and in particular, to a deaf temperament and view of life, which was at odds with the hearing view. In a strange sort of way we are returning to this concept of surdophrenia - but now in a more positive light.
When Deafness was first discovered, it was somewhere in the rebound from wellness to deviance. Deaf people were regarded with curiosity and there was some research on their situation. In these early societies, we can imagine that deaf people were seen as one part of the extreme of society rather than as deviant. Deaf and blind people figure in the Bible and in early writings. Almost certainly at the margins of society, they were nevertheless tolerated. For most of the time, they must have led solitary lives and their everyday lives must have been very like the accounts in Victorian times of deaf people in villages. Deaf people seldom were able to meet or to associate with each other. Only with the advent of the schools for the deaf in the late 18th century did it become possible for deaf people to develop the language and culture. To many historians, these were golden periods of deaf history as deaf people grew from a social acceptance which placed them at the margins, but with the opportunity to extend their language and culture. This period which was mostly in the 19th century in England, declined with the emphasis on teaching and hearing curricula.
With professionalisation, deafness became different and then negatively different. Professionals took their importance from the extent to which they could help deaf people to move out of their problems and into the normal world. Such a situation led to the view that deaf people manifested deviant patterns of behaviour and that they had to be made well again. The difficulty was that the label was used as a diagnostic category and the cultural affiliation became a negative mediacl term, for a state which had to be altered. As a result the energies of society has gone towards trying to find a cure. Deaf mental health has been treated in this way for perhaps, the last 80 years.
Deaf Community leads to Diagnosis leads to Labelling leads to Negative Association leads to Deviance
Where the deviance could be seen to create a disadvantage to the individual, it could be treated as maladjustment or behavioural problem and deaf people were confined for their own and society's safety. Behavioural problems have occupied a large part of the dignosed group of deaf people who have mental healtrh problems. In the last 15 years, the supposed devaince of deaf people has been questioned.
As knowledge increases about deaf culture, It is possible to determine that problems arising among deaf people may be attributed to communication mis-match. When deaf people regulate their own community, there is some stability. However, the variation in behaviour which is tolerated may be greater than for hearing people. The differences which can be detected in deaf people's views of the world may be indicative of a shiift in perception and understanding of the world.
This situation has often been described in mental health literature as being typical of minority groups. However, deaf people by being disabled as well, lose out on the control of their lives which other minorty groups may have. It remains a struggle between deaf people who believe their view and experience of the world are their culture and those who consider that this view is abnormal. The weight of evidence is shifting towards an acceptance of the deaf way. Deaf people are entitled to their own view of the world around.
To the extent that this view is similar among deaf people, then it becomes their culture and well-being. Well-being can then be seen to be the state in which stress is reduced and the conditions exist which will allow self-actualistation. Deaf people at this point would then be accommodated in society.
The notion of Deaf Wellness has also to be seen in terms of the clarification of the ideas of assimilation and accommodation. While the former would work against the involvement of deaf people except on majority terms, the latter implies a real acceptance of deaf people. The first idea is a majority cohesion view - people have to assimilate in order to preserve the wholeness of the community. They have to accept rules.
This is the route to stress and marginalistaion for minorities. However, accommodation leads to acceptance and a recognition of deaf wellness. There remains a great deal of work to be done to determine the characteristics of deaf wellness. The questions asked in the study indicate some aspects which can be followed up. Deaf people believe a well deaf person is someone who is happy, good at communicating, confident, helpful, polite, has a good attitude, lots of energy and works hard. Significantly, the well person is a good signer.
This part of the study was carried out by a postal questionnaire, which was sent to Directors of Social Service. It was expected that this would be passed down the workers with most direct contact with deaf people and the case files. This was usually the case and the results are based on the returns from a range of middle managers or team leaders. A process of negotiation was undertaken with the Association of Directors prior to circulation and it was already apparent that the Directors were unsure as to whether the data requested would be available, in any form, within their Social Services Department.
The purpose of the study was to examine the procedures and resources, which were used in all the Local Authorities in England. This was a total of 110 Authorities, although at the time of the data collection, a number of these were shadow authorities ( ie Councils waiting to take over after a local government change). The data was collected during 1996 and a focal date for some of the questions was set at 1st March 1996. A significant number of questionnaires were returned after this date and much of the information will relate to services, which were in place during 1996, rather than on a specific date.
Despite pilot testing there was ambiguity in some of the questions. Coupled with the fact that, even when the questionnaires were passed down, they did not reach a person who had all the facts to hand, the circumstances mitigated against a neatly enclosed data set. Our conclusions have to be expressed with care. Most of the analysis is designed to give a simple picture of the data supplied.
Among the 71 respondents, there were:
Although there has been a positive overall response from Social Services Departments in the UK, it seems that the initial concerns of the Directors of Social Services is confirmed: there are simply not the statistics and records available, to provide the detailed information which is required. What is particularly striking is the lack of clarity in procedures for detaining Deaf people under the Mental Health Act, in the specification of mental health care or indeed in the mental health diagnosis. It is sometimes difficult to determine if the respondent has access to records, which are indicative of the mental health needs of the Deaf person. The statistical analysis shows inconsistency from one section of the questionnaire to another.
The result is that it is not possible to say with any certainty how many Deaf people are in the care of Social Services and moreover, how many are or should be diagnosed with a mental health problem. It is not clear that there are services available consistently nor reliably and it is not obvious that effective policies and practices in regard to other agencies, are in place. At the present time, where a person needs service, the mechanisms for budget planning, motivation for forging links with other services, may be absent.
In short, it is very difficult to obtain reliable and up to date information on the provision for Deaf people in Social Services departments in England at this time.