Deafness in Society:  Session 10

Clark Denmark

10.0 Deaf Mental Health

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. What is perceived in some cultures as problematic may not be so in others.

In a rich multicultural environment such as in the UK these problems are heightened.
However, one group has been involved in services from its first discovery as it is a group which grows out of the mainstream population. Unlike other incoming or even indigenous minority groups, deaf people are born into majority families. The fact of their cultural statement of identity has therefore become all the more startling. The search for identity in any group is of great significance for the mental health of the members and so is entirely understandable. However, where it arises (as it does for 95% of people) in a tension between the mainstream community aspirations of parents and family and the need for assertion of identity as a non-hearing person, there are bound to be difficulties. 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 are well-known: 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.

Our recent work on Deaf Health in Scotland 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.
Because of the minority status of deaf people, there are insufficient resources at local level and there is considerable concern that specialist services are appropriate and available to this group. The fact that deaf people also have linguistic needs different from the mainstream population is also a factor which concerns the service providers.

The issue can then be stated as:
·    what are the needs of deaf people in terms of their mental health and
·    to what extent are the services provided by the health system appropriate and effective

10.1 What is the situation now?

It is estimated that about a quarter of the population consult their family doctor with a mental health problem each year. Approximately 1 person in 7 suffers from a diagnosable mental health problem (mainly depression and anxiety) in any given week. Around 0.4% have a psychotic illness (mainly schizophrenia or affective psychosis) (Source: UK, Department of Health Fact Sheet for “Health of the Nation.”).

Our pilot work on deaf people indicates a much higher incidence of problems in mental health: Alberdi (1996) suggests 1.9-2.8% receiving specialised psychiatric treatment in Denmark; Kyle (1995) claims 1.92% of deaf people aged 31-35 years have mental health referral (in the UK), Coates and McClelland (1996) identify 17% of the 16-65 year old deaf population in Northern Ireland as having ongoing mental health problems and Jacob et al (1991) in the Netherlands claim that 20-35% of deaf people consult specialised social work for the deaf.. These figures suggest an incidence of severe problems of between 5 and 8 times more frequent amongst the deaf population.

In Italy, research indicates that deaf children’s emotional problems are even more unrecognised than even the communication problems might imply. Conte (1996, in press) shows that deaf people are referred to general psychiatric services and are thus very widely dispersed in the community. The implication is that inadequate services are available.

Mental Health tends to be the least popular area of health provision, yet it can be argued that mental health underpins all models of health. For most people, mental health problems arise from identifiable personal and social difficulties. To some extent cultural factors are taken into consideration in the diagnosis of these problems. Where the patient is disabled, some allowance is made for cognitive capacity and learning difficulties. Deaf people share the features of each of these two, but have little provision. They use a different language as adults and inter-marry and associate with other deaf people. When mental health problems arise, they do so because of the personal and social difficulties noted above, and also as a result of the problems of language deprivation in early childhood.

As a general goal, services to the community seek not only to treat mental illness but also to prevent it. As society becomes more diverse and traditional social structures are altered, the usual interpersonal support systems break down. People become more isolated and difficulties of a personal nature are less likely to be detected early.

In the case of deaf people, such factors are heightened since most deaf children (95%) grow up in families who are hearing and for whom there is a serious communication barrier. As a result the deaf child’s spoken language development is affected and typical routes to socialisation and personality development are severely curtailed. Deaf people experience greater deprivation early and to a large extent, their increased incidence of mental illness can be attributed to these early experiences. At present, these early home conditions and problems have not been altered in the majority of families in Europe and so there remain major public health problems for young deaf people when they leave home. Targets for the reduction of mental illness in the UK include the increase in care within the community and the reduction in medical provision. Although there has been a reduction in the number of hospital beds available, there is little research on the situation of deaf people, for whom non-specialist care may be a real problem because of the inherent non-communication situation. Kyle et al (1997) indicate the wide discrepancy in Scotland, in effectiveness of provision as claimed by health agencies and by the deaf people themselves. A priority has to be the collection of data in Europe on deaf people’s needs and a comparative analysis of the current provision to meet those needs.

10.2 Research to date

Recent research in the UK (Kyle and Griggs 1996) has demonstrated the number of deaf young people referred to psychiatric services is disproportionately higher than that of the comparable hearing population. By following a cohort (n=573) of deaf people now aged 35-37 who were also assessed in 1974-6, it is possible to state that significantly larger numbers of deaf young people have been referred to the three supra-regional mental health units than hearing people to mainstream psychiatric units.
These figures are bound to be huge underestimates since firstly, those with severe emotional problems as children were already excluded from the cohort and secondly, the very nature of deafness reduces direct contact with GPs and other health care workers who would in normal situations detect and refer problems of mental health. There is also some evidence that large numbers of deaf people remain misdiagnosed in institutions for the retarded.
Nevertheless, of the residual group, 5.76% have reached the specialist units for deaf mental health, significantly more than for the hearing population.

Table 1: Referral patterns among deaf people to Supra Regional Mental Health Units by the age of 35 years and hearing people to non-specialist psychiatric services. (Statistics represent consultant episodes for mental illness 1991-2)*.

The striking difference in these figures is for the behavioural problems which deaf people face. Although there are significant proportions of psychotic and similar proportions of neurotic, deaf people are much more likely to be referred with disturbance of behaviour.

Similar patterns of referral and treatment have been reported in Denmark (Alberti, 1996) in Northern Ireland (Coates & McCLelland, 1995), and in the Netherlands (Doornkate, 1994).

10.3 Mental Health Care

Concern has grown over how deaf people with mental health problems can access the medical and support services they need. In an adaptation of Goldberg and Huxley’s (1992) filter model, Checinski(1994) describes the distorted service delivery to the deaf community as the ‘funnel’ effect. The original ‘filter’ model describes levels of care through which a patient passes, from developing mental health problems in the community, through the general practitioner, and eventually to specialist psychiatric care. Within the deaf community, the system of filters between levels appear to be blocked. The very nature of deafness reduces direct contact with GPs, who may not be alerted to the patient’s problems. It is also possible that psychiatric problems may be dismissed as features of deafness.

Four factors are identified as creating the ‘funnel’ effect: misdiagnosis, often leading to inappropriate treatment, stigma and misunderstanding of mental health problems, poor access to services, and lastly, the low population density of the deaf community which leads to ‘a poor cultural awareness of mental disorder and low expectations of help’ (Checinski 1994).

10.4 Mental Health Care Assessment

Although in the UK, there is a general trend to models of needs led assessment for vulnerable groups, including deaf people with mental health problems, few procedures or instruments have been developed with which to ascertain deaf people’s perceptions of their own experience and needs. Lelliott et al (1996) in a study of mental health residential care suggest that there has been a reduction in appropriate places for people with the most severe behavioural problems and violence - a feature of a significant proportion of deaf referrals. Furthermore, research focusing on deaf ‘wellness’ (Griggs, in progress) suggests that deaf peoples’ understanding of positive mental health is based on concepts and concerns that lie outside those usually considered as significant to the hearing population.

10.5 Deaf Wellness

It is quite easy then to see that deaf people have more problems in their mental health than do hearing, at least as compared to the usual pattern for hearing people. We know that mental health varies from one culture to another. It is possible that there are variations in the deaf community. That is to say, it may be that deaf people expect a different level of health from hearing people. Deaf people who have many difficult experiences with hearing people may come to believe that difficulties emotion and personal relations are normal and may deal with them in different ways to hearing people. Research by Griggs (in preparation) is investigating this and will give a much clearer idea of how deaf people see their world. We believe this will be very important in producing a better view of deaf mental health.