Counselling in a glaucoma care service
Counselling can improve the eye health and quality of life of patients with glaucoma.
Glaucoma patients often think that their condition is synonymous with blindness and disability, leaving them feeling worried and vulnerable. They may also develop mental health issues such as depression or anxiety. Unfortunately glaucoma patients may have mental health issues even if these concerns are addressed. The glaucoma care team must offer patients balanced information that will help them to understand their options, regain hope for their future, and take practical action to protect their eyes and vision. This support – known as counselling – will help to improve patient’s quality of life.
Who should counsel glaucoma patients?
In a typical, busy clinic, some aspects of counselling can be delivered by examining clinicians, supported by other members of the glaucoma care team. However, it is preferable to give patients access to a dedicated counsellor (who may also offer counselling about other diseases and postoperative care).
Ideally, the glaucoma care team should train someone to take on this role. The person must be approachable, be skilled at talking to patients and their families, and must understand glaucoma and its treatment. Nurses, social welfare, or community health workers could be good candidates for training as glaucoma counsellors.
It is vital that clinical personnel on the glaucoma care team are in close contact with the person responsible for counselling and that they share any relevant clinical information (about the patient) with the counsellor. This enables the counsellor to answer any questions the patients may have, and/or to ask the clinicians for more information if anything is unclear.
The purpose of counselling
Counselling can be helpful in several ways, including:
To help patients understand their condition and accept their prognosis; this may sometimes include coming to accept that the vision they have lost cannot be restored. To find out what patients need or want to do and refer them to other services that may help (e.g. low vision or rehabilitation). To provide information and help them make a decision about treatment, such as surgery. To improve patients’ compliance with their medical treatment (e.g. regularly instilling eye drops in the correct way).
Focusing on the patient and their needs
A list of information can be helpful and complimentary to counselling and is not necessarily the opposite of counselling. Counselling is, by its nature, patient-centred: the counsellor is focused on the patient, what they know and understand, what they want to do, and what they need in order to have good eye health and to live as well as they possibly can.
Patients’ family members and carers should always be included in counselling and it is important to listen to them. Ask them questions and find out how they intend to help the patient to achieve her or his goals. Another reason for including family members is that suffering from vision impairment or blindness without a visible cause such as a white pupil (as in cataract) can lead to alternative explanations, e.g. laziness or curses, and this can result in the patient being stigmatised by others. Red eyes from eye drops can be mistaken for an alcohol problem, for example. Constant and expensive treatment and visits to the glaucoma care team, seemingly without improvement, may be difficult for the patient to explain.
It may be necessary to provide the same information several times, particularly shortly after diagnosis, when an asymptomatic patient may be in denial. We have to be careful, however, as providing the same information, in the same way, may not have the desired effect – patients may stop listening if the information seems over-familiar. Finding out how patients have used the information in their lives, or how it applies to them, makes for a better approach (see Table 1).
Where possible, avoid giving information that sounds like a command. For example, instead of telling a patient to “use your medication or you will go blind”, ask them to tell you what they know about the consequences of not adhering to treatment. Listen carefully, then follow up by asking what they think they can do to avoid these consequences. After you have listened to the patient, reflect back to them what they have said (“So, what I heard you say is that …”). Then you can explain further or correct any misunderstanding.
Explaining the disease
Take care not to overload patients with facts – only give information that they can understand and apply in practice. Start by asking patients what ideas they have about glaucoma and about the subject of the counselling session (e.g., their own prognosis, acceptance of a surgical procedure, or compliance with treatment), and go on from there.
• Develop a rapport with the person. There should be a relationship of trust – a therapeutic relationship. Listening is vital. Allow the patient to express themselves in their own words. This is also a way of finding out how they understand the situation, and where there may be gaps in their knowledge.
• Explain the disease to them in terms that are easy to understand (see From the Field panel for an example).
• Listen to the patient. Try to understand how they see their disease and its treatment, as well as their interaction with the health system.
• Try and determine what their ‘soft spots’ are – what matters to them? For example, their children, their job, or looking after an older relative? Explaining how adhering to treatment would benefit them and the people or things they care about, may be helpful motivation for them to take action or change their behaviour.
• You may have given them some bad news about vision that is already lost, and which may be lost in future. You must give them time and space to go through the various stages of grief: denial, anger, bargaining, depression and then acceptance. Only when they accept this can they take action.
Glaucoma also has a genetic component, and it is important to discuss this carefully and with great sensitivity. Knowing that glaucoma can occur in many family members is helpful as patients can encourage their relatives to come for screening. However, if glaucoma is seen as a condition that will inevitably lead to blindness and disability, there is a risk of stigma which can lead to family difficulties. For example, it could cause problems in a relationship if there are fears about passing the condition on to children. Therefore, the counsellor must be tactful and guide the discussion towards the identification of first-degree relatives, in particular. Encouraging compliance with medical treatment When discussing eye medication, it is important to ask the patient how often they use their medication and to invite them to demonstrate how they instil it. You can then show them the correct way to do it.
Patients’ ability to instil medication correctly may be affected by several factors, e.g., arthritis of the hands, and it is important to suggest adaptations that can help them, or to train family members to do it for them. Family members can also remind the patient when it’s time to instil their eye medication, which will help to improve their adherence to medication regimes and improve the effectiveness of their treatment.
The PDF of this article can be printed and given to patients as a guide.
Low vision and rehabilitation
If the patient has vision impairment, refer them for low vision services – low vision services can provide equipment and training to help them make the best use of the vision available to them. Patients may also benefit from rehabilitation services, where available, and can learn skills such as reading Braille or using a keyboard, typewriter, or other adaptive technologies.
A counsellor can also support the patient to adapt to their condition and improve their circumstances. Instead of listing the different environmental modifications they can make, it is better to find about their present condition and how they can adapt, depending on their needs. What do they struggle with, and what do they want to be able to do? For example, finding their way from their home to a friend’s house, or taking care of their physical appearance (personal grooming).
This discussion should be about concrete ideas that the patient can carry out with what they have available. You can make suggestions, but it is also important to elicit from the patient and their family members or carers what they can to achieve that change.
Patients may benefit from joining support groups for people with glaucoma. These are often organised by patients for patients and their relatives, and sometimes they are facilitated by eye care providers such as nurses. Here patients can learn more and share their own experience with others. They can have a positive impact on someone by, for instance, sharing techniques used in maintaining adherence to medication, procurement of medication, or adapting their environment and lifestyle. Find out what groups are available in your area and encourage patients to join them.
Peer mentoring is another useful strategy. This is where the patient is connected to another person with a similar condition to provide guidance towards developing self-help or personal grooming skills, for example.