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The nurse's role in helping patients cope with sight loss

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VOL: 99, ISSUE: 48, PAGE NO: 30

Mark Browne, LL.B, is finance and project development officer, Low Vision and Eye Health Unit, Royal National Institute of the Blind, London

Sight loss is a major health concern and is much more common than we realise. There are around two million people in the UK with sight problems, 80 per cent of whom are aged over 65. This figure will increase sharply over the next 30 years as life expectancy increases (Vale and Smyth, 2002).
Sight loss is a major health concern and is much more common than we realise. There are around two million people in the UK with sight problems, 80 per cent of whom are aged over 65. This figure will increase sharply over the next 30 years as life expectancy increases (Vale and Smyth, 2002).


Nursing staff need to be aware of the implications of sight loss for patients and recognise that these patients often have complex nursing and care needs. In addition, older people with sight loss are likely to have other age-related health problems, such as hearing loss and difficulties with mobility. Nurses should take these factors into account when planning and delivering care.


Eye conditions
Nursing staff should be particularly aware of the four most common causes of sight loss:


- Age-related macular degeneration (AMD);


- Cataracts;


- Diabetic retinopathy;


- Glaucoma.


Age-related macular degeneration


Age-related macular degeneration is the most common cause of sight loss in people aged over 65. The macula is a small area at the centre of the retina, which helps us to see straight ahead, focus on detail and appreciate colour (see Fig 1). With increasing age the delicate cells of the macula may become damaged and stop working, causing blurring or distortion of central vision. This makes detailed work, such as reading, writing and recognising small objects or faces, very difficult.


There are two types of age-related macular degeneration: 'wet' and 'dry'. The wet type results in a build up of fluid under the retina, causing bleeding and scarring and eventually sight loss. It can progress rapidly, normally over a few months, and can sometimes respond to laser treatment in the early stages. 'Dry' macular degeneration - which is the most common type - develops much more slowly. As yet, there is no treatment.


Patients with macular degeneration often have enough peripheral vision to move about and maintain their independence.


Cataracts


A cataract is a clouding of part of the lens of the eye. The lens helps to focus light on the back of the eye - the retina - to form an image. Cataracts can form at any age, although most develop as people become older. One or both eyes can be affected. Symptoms include blurred or misty vision, being dazzled by bright lights and sunlight, and faded colour vision.


The most effective treatment for cataracts is an operation under local anaesthetic to remove the cloudy lens and replace it with a plastic one. In the past, a cataract was not removed until it had 'ripened' (completely clouded over) and vision was very poor. The time it took for this to happen varied among individuals. However, modern techniques mean that people no longer have to wait until their vision has completely deteriorated before they can have the operation. Cataract operations are normally performed on one eye at a time.


Diabetic retinopathy


This condition is very common in people who have diabetes. The blood vessels in the retina may bulge slightly and leak blood or fluid. In time, the macula may also be affected, leading to deterioration in central vision. As the eye condition progresses, it can sometimes cause the blood vessels in the retina to become blocked, leading to new blood vessels forming in the eye to repair the damage. However, these new blood vessels are weak, are in the wrong place and can bleed easily, leading to the formation of scar tissue. The scarring pulls and distorts the retina, resulting in the retina becoming detached.


Sight may become blurred and patchy as the bleeding obscures vision. Symptoms can be managed through laser treatment if discovered early enough, although vision already lost cannot be restored. Patients can, however, reduce the risk of losing their sight by controlling their blood glucose and blood pressure levels, and by eating healthily and undertaking regular physical activity.


Glaucoma


This is the name given to a group of eye conditions where the optic nerve is affected by pressure in the eye. Glaucoma damages peripheral vision and so patients are often unaware that their sight is being affected. Only an eye examination at an early stage can detect this. This is one reason that people should attend regular check-ups. Advanced cases of glaucoma can result in tunnel vision whereby a patient can recognise a face in front of them but not notice someone standing next to them.


A layer of cells behind the iris (the coloured part of the eye) produces a fluid called aqueous humour. The fluid passes through a hole in the centre of the iris (called the pupil) to leave the eye through tiny drainage channels. Normally the fluid produced is balanced by the fluid draining out, but if it cannot escape or too much is produced, then eye pressure will rise. A certain amount of pressure is needed to keep the eyeball in shape so that it can function properly. However, if the pressure is too high it will damage the optic nerve. There are four main types of glaucoma: chronic, acute, secondary and developmental (see Box 1).


Glaucoma affects about two per cent of people over the age of 40 in the UK. People from African-Caribbean communities, those with a close relative with glaucoma and older people are at a much higher risk of developing glaucoma than the rest of the population.


Treatment with eye drops can limit damage to the eye if started early enough. However, if this does not help then either laser surgery or an operation called a trabeculectomy may be carried out to improve the drainage of fluids in the eye.


Care of the newly diagnosed patient
Attendance at an eye clinic can be stressful, especially for patients attending the clinic on their own. In a survey carried out by the Royal National Institute for the Blind (McBride, 2001), patients voiced concerns about a lack of clear information about what was happening, especially concerning delays. Notices are of little use to patients who are unable to see what is going on and announcements made to the whole clinic, even via a speaker system, are ineffective if the patient has difficulty hearing above any background noise.


It is essential that patients know what to expect at each stage of the examination, and that they are informed of any unexpected changes. They should be reassured that if they need, for example, to go to the lavatory or get something to eat or drink - this is particularly important for patients with diabetes - they will not miss their appointment. They must also be warned about the effects of dilation of the pupil - a common procedure during the eye examination - which can lead to blurred vision and be quite distressing (McBride, 2001).


Many patients feel confused, even upset, by the information given to them during the consultation. Few are able to absorb what they have been told and, in many cases, they do not know, or are not at a stage to think about, the questions they need to ask (Barrick, 2000). Further information on the eye condition in question is not always available. As a result, patients are often left feeling totally bewildered.


Although clinics are extremely busy, nursing staff should try to consider what the patient in front of them is feeling and has been able to absorb. Nurses should ask the patient whether or not they have understood what they have been told and answer any queries clearly, without using complicated medical terms. Relatives and/or carers of the patient need to be involved too, if the patient wishes it.


Further information on the eye condition in question should be made available to patients in the format most appropriate for them (such as cassette tape, large print, or other language). Such care and attention has been shown to result in reduced stress and anxiety for patients, increased compliance with medication and treatment, and faster recovery (Brading and Yerassimou, 1998).


When making first contact with patients in the clinic, nursing staff should ensure that they are in line with the patient's field of vision when introducing themselves. The tone of voice should be welcoming and reassuring, and it is important to ensure that the patient can hear what is being said. Occasionally a gentle touch on the patient's hand or lower arm can do a great deal to comfort him or her, although this needs to be carried out with care so as to avoid a possible invasion of the patient's personal space.


Most contact with patients with a visual impairment will be in the eye clinic and in other outpatient clinics, such as the diabetes clinic, or - if treatment is being provided, as in the case of cataracts - day surgery. However, some patients require longer stays on the ward. These patients have additional needs that should be considered.


A stay on a busy ward can be an anxious and even disorienting experience for a patient who has lost his or her sight. As in the eye clinic, it is likely that patients will have difficulty in hearing above any background noise, so nursing staff must take the time to ensure that these patients know what is going on. Many patients, especially in the older age groups, may appear stoical about the treatment and care they receive, but their concerns are as deeply felt as those who express their worries more openly (McBride, 2000). Regular checking as to the patient's well-being does a great deal to reduce patient anxiety and isolation.


Give consideration to the day-to-day needs of patients with sight loss. For example, it is inevitable that items of furniture and other objects (such as lockers, water jugs and buzzers) will be moved so that the patient can be examined by nursing staff. However, as soon as the examination has been completed, these items should be returned to the same place as they were so that the patient can be reassured in knowing that they can be reached easily. Other help such as letting the patient know what is on the plate in front of them during mealtimes is much appreciated by patients with sight loss.


The role of the eye clinic liaison officer
A diagnosis of sight loss can be a terrifying prospect. If a patient is particularly distressed or confused by the diagnosis and his or her needs cannot be addressed straight away by nursing staff, then the patient should be referred to a hospital-based eye clinic liaison officer (ECLO) or other support worker so that they can discuss any fears or concerns.


Based within the eye clinic, the ECLO provides an invaluable front-line service for patients, offering them initial emotional support in dealing with the trauma of sight loss and signposting them to appropriate statutory and voluntary services for further support. The ECLO is not confined to working in the clinic and, where required, can visit patients on the ward.


The role of the ECLO is to provide timely support and information to patients after a diagnosis of permanent sight loss and to be a contact point for patients as they adjust to a new way of life.


Patients facing a distressing diagnosis often need time to talk about their feelings, fears and aspirations and to ask questions. This time is not always available to medical or nursing staff within the busy eye clinic but it can be provided by the ECLO.


The ECLO needs to have a range of skills, including active listening, empathy, effective communication, information gathering, diplomacy, and a good working knowledge of the services available for the visually impaired. The RNIB, in conjunction with City University, London, offers a training course - Eye Clinic Support Studies - which gives participants (such as nurses) the confidence and skills necessary to work in partnership with patients in dealing effectively with the initial emotional and practical issues resulting from permanent sight loss.


Normally, patients referred to an ECLO use the service for only a short period of time and then move on to other support services. However, the long waiting times for services in some areas often force patients to seek further support from the ECLO during the waiting period if they have further questions or concerns. Staff should certainly not make assumptions about how a patient will respond and adapt to his or her sight loss. Therefore, nursing staff should encourage patients to maintain contact with the ECLO for as long as they feel is necessary.


The ECLO provides a bridging service between health, community and social services through referring the patient to various health, voluntary and social care agencies for appropriate support and services, such as low vision services. Where necessary, the ECLO can act with the patient's consent on behalf of the patient when liaising with these agencies.


Research has shown that patients who have been newly diagnosed with an eye condition will have a significantly worse experience of the health system and be less informed and motivated in facing their future if they do not receive this kind of support (McBride, 2001). Therefore, the importance of having a liaison officer cannot be underestimated.


Some clinics, though, do not have access to an ECLO or support worker of any kind. In these situations, a designated member of staff - such as a nurse or auxiliary nurse - should be appointed for each nursing shift so that he or she can spend time with any patient who is particularly distressed.


The nursing sister or eye clinic manager should also ensure that adequate information for patients is available in the clinic on local and national support services.


Conclusion
Much emphasis is rightly placed on a patient's medical care, but their social, emotional and additional care needs can often be overlooked in a busy clinic and ward setting. Patients with sight loss are often older people and they can be particularly vulnerable. When their needs are not addressed, patients with sight problems are often unable to move on.


To ensure that such vital support is available for all patients with sight loss, the RNIB is calling for medical and support staff to receive basic visual awareness training and for all eye clinics to recruit an ECLO who is a recognised and integrated member of the eye care team (Browne, 2002).


PATIENT INFORMATION
The RNIB produces a series of leaflets to give patients a better understanding of their condition, treatment and prognosis. Conditions covered include age-related macular degeneration, cataracts, diabetic retinopathy, glaucoma, nystagmus and retinitis pigmentosa. In addition, RNIB has produced a series of factsheets describing some of the rarer conditions. Copies of these leaflets and factsheets can be obtained by contacting the RNIB Helpline on 0845 766 9999 or from the RNIB website .


This article has been double-blind peer-reviewed.
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