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A vicious circle: visual impairment in people with learning disabilities

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VOL: 97, ISSUE: 32, PAGE NO: 36

Penelope Stanford, MSc, RGN, is a nurse teacher at the University of Manchester

Gary Shepherd, BSc, is a student, at the University of Manchester

Eyesight problems can be more prevalent in people with a learning disability than in the general population (Department of Health, 1995). It has been estimated, throughout the world, that 40% of people with a severe learning disability have experienced problems with their eyesight (Kerr et al, 1996).

Eyesight problems can be more prevalent in people with a learning disability than in the general population (Department of Health, 1995). It has been estimated, throughout the world, that 40% of people with a severe learning disability have experienced problems with their eyesight (Kerr et al, 1996).

Specifically, individuals with Down's syndrome have a high incidence of refractive optical errors and corneal abnormalities such as keratoconus (Doyle, 1998). There is also evidence of a link between Down's syndrome and premature ageing that suggests an association with the formation of cataracts (Zaremba, 1985).

Wake (1997) identified visual disturbances, which can be produced by defects such as hemianopia and coloboma, as being prevalent in people with a learning disability. It should also be noted that people in this group are as likely as any others to suffer from ophthalmic pathology predisposed by diabetes, thyroid diseases, rheumatoid diseases and immunological deficiencies. Lastly, it can be presumed that as the lifespan of those with a learning disability increases, there will be a susceptibly to other sight-threatening ophthalmic conditions such as glaucoma and retinal detachments.

A devastating impact
The intellectual and social development of people with learning disabilities can be severely arrested when a visual impairment goes unrecognised. Fagan (1996) cites visual impairment as an underlying cause of self-abuse and aggressive behaviour. He also believes that coexistent disabilities are intensified by mismanaged visual problems.

A carer's lack of awareness of a visual problem can initiate a vicious circle leading to further disablement. Visual impairment may predispose clients to communication difficulties, poor interaction with their environment, challenging behaviour and low self-esteem, which in turn can distort the expectations of carers. Stevens (1998) has advocated Makaton sign language as a tool for effective communication among people with learning disabilities. However, visual impairment can prevent the effective use of Makaton and a mental or physical disability restricts the use of Braille or Moon, so the options are limited.

If no recognised verbal or visual systems are available, the individual's ability to express their needs becomes frustrated (Royal National Institute for the Blind, 1993a). This can result in insufficient stimulation, which can often be the underlying cause of a client's challenging behaviour.

Holistic and individualised assessment and intervention ensure that carer and client cultivate a close relationship. This will help the carer to detect subtle changes in the client's mood, posture or sounds, which could be recognised as attempts to communicate - but only if the visual problem has been noted and taken into account.

Visual assessments
To improve the potential of this patient group it would seem logical to carry out regular visual assessments. When a visual impairment has been identified in a client, staff involved in their care should be trained to give the best possible support.

The assessment involves more than a simple eye test. Physiological testing establishes visual ability, but how the individual actually copes in their daily life must also be considered. It is this inherent coping mechanism that will have an effect on the person's capabilities and behaviour. Pesudovs and Coster (1998) advocate using a visual disability scale to determine the effect of the impairment on how the individual carries out everyday activities such as dressing and eating.

Environmental factors
A client's living space will have an impact on how they cope with day-to-day activities. Carers should consider making adaptations that may alleviate clients' feelings of boredom, confusion and anxiety (RNIB, 1993b). People benefit from a stimulating environment and there is no reason to assume that a person with a learning disability, sighted or otherwise, requires anything different. However, the RNIB (1993b) has suggested that it is possible for an environment to be overstimulating - and therefore confusing and difficult to cope with - and this should be taken into account.

Soft furnishings can help to reduce echoes, making it easier for the visually impaired person to reject background noise and focus on more interesting sounds. Contrasting colours and areas of dark and bright can help the person distinguish obstacles around the home. More tactile clues to aid mobility, such as textured strips on the wall (at an appropriate height) or near doors are useful and have been found to have a positive effect on clients' mobility.

It is vital that care is planned according to each client's individual needs. As far as possible, the client's environment should remain constant, as moving the person to unfamiliar surroundings can disorient them and threaten safe mobility.

Developing a sense of self
Argyle (1994) identified four factors crucial to one's concept of self:

- The reaction of others;

- Comparison with others;

- Social roles;

- Identification.

It can be assumed that the challenges to developing a positive self-image encountered by a person with a learning disability can be extensive. Visual impairment can further inhibit this. Markwick and Sage (1997) suggest that a person's physical appearance is of primary importance in forming a concept of self. A visual impairment could deny a person a visual perception of comparable others.

Other people's expectations pose challenges to individuals with learning disabilities. A concept called 'the conservative corollary' (Wolfensberger and Thomas, 1983) suggests that the more devalued a person is because of their disability, the more chance they have of being devalued further.

The report He'll Never Join the Army (Down's Syndrome Association, 1999) demonstrated that health professionals discriminate against people with Down's syndrome and cites examples of them being patronised, insulted and even being denied emergency treatment or pain relief.

Levy (1999) points out that no one is too disabled to have their eyes tested. If the difficulties associated with eye testing are allowed to become an excuse for not testing, then the person is being further devalued and discriminated against.

Whatever disability a person has in addition to visual impairment, their health needs are as important as those of any non-disabled person. Although we all may wish to pride ourselves on our individualised approach to nursing assessment, inequalities have been noted in ophthalmic care. Levy (1999) found a generalised neglect of eye care needs. She cites a lack of spectacles prescription in children's early years and cases where eligibility to be registered as blind had not been recognised.

Health promotion tools such as the 'OK' health check (Matthews, 1997) have been developed in response to the traditional problems associated with meeting the health care needs of people with learning disabilities. Eyes and vision are components of the 'OK' checklist, which contributes to an overall perception of health.

The appropriate method of testing an individual's vision should be selected according to their known intellectual ability. For example, the Snellen chart can be used with those who can recognise letters, and the 'E' chart or Kay picture chart with those who cannot.

The role of nurses
To address issues such as client-centred care and health promotion, a greater emphasis should be placed on training nurses to care for people with a learning disability, particularly in general health care settings. Nurses need to develop the confidence to become involved with the care of an ophthalmic patient who also happens to have a learning disability.

Nurses must consider the effects of the hospital environment on individuals who have a learning disability: for example, they may become frightened because they are not used to people in uniforms. Awareness of the care of a person with visual impairment should also be integral to settings which specialise in learning disabilities, and a specialised ophthalmic nursing course for learning disability nurses should be considered.

Evidence from practice has shown that a holistic approach will reduce the frustration of a person with learning disabilities who is also visually impaired, reducing their social stigmatisation. This domino effect can be seen as a positive move, counteracting the vicious circle of visual impairments causing more problems for the disabled person. It can be achieved by promoting the interests of this client group in all areas of nursing, developing links not only with general nursing and learning disability nursing but also with specialty practice such as ophthalmology.

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