How to counsel trichiasis patients

Surgery is an invasive treatment and is often viewed with fear and anxiety.

Uptake for trichiasis surgery

Acceptance and wider uptake of trichiasis surgery is facilitated in two ways. Firstly, by engaging with the community through targeted discussions and health education.

And secondly by addressing the individual concerns of each family and patient through counselling, health education and supportive follow up.

The following case study highlights why it is so important to involve the community as well as the patient.

Trichiasis surgery in Amhara Region, Ethiopia

Many trichiasis patients were not accepting trichiasis surgery through local, free outreach services. The reasons for non-acceptance were explored in focus group discussions, which identified a number of concerns.

First, most patients mistakenly believed that the surgical wound needed up to 2 months to heal. During this time they also thought they must avoid sunlight exposure, productive activities and getting near to fire or smoke, or else the trichiasis would recur. Second, patients believed that the operation was very painful; they were unaware that surgery is conducted under local anaesthesia. Third, they were very concerned about the quality of surgery.

Consequently, patients either tended to decline surgery (even after presenting to local surgical sites) or chose surgical services provided by external teams rather than locally available services. Programmes tended to focus their mobilisation efforts on simply creating more awareness of their surgical services. They did not engage sufficiently with communities to address patients’ concerns and improve incomplete knowledge.

Addressing the concerns of trichiasis patients

• In a cluster of six large villages, after eye ambassadors identified and counselled patients, 240 operations were performed within the following two weeks.
• In adjacent villages, five outreach visits were organised at the same time using the usual mobilisation methods of sending messages through public announcements in the market and through health extension workers. This resulted in just one patient undergoing an operation.
• In a third cluster, an outreach visit that was organised using only public announcements in the market led to no patients coming forward for surgery. When the eye ambassador approach was used in the same cluster a short while later, 114 patients underwent surgery in less than a week.

Listen – inform – listen – advise © Victoria Francis CC BY-NC

Tips for effective mobilisation of communities and families for trichiasis surgery

• Community-based screeners may need to carry out more than one visit to educate and support reluctant patients and their families. The first visit may be the first time the family becomes aware of treatment for trichiasis or that there is a risk of vision loss due to trichiasis. Follow up visits may be required to address their concerns.
• The decision to accept trichiasis surgery is rarely made exclusively by an individual patient. Especially for women, the final decision may culturally rest with the husband. For this reason, counselling needs to be carried out with the family as well as with the patient.
• Health workers or eye ambassadors (or the equivalent) who identify trichiasis patients need to recognise that people may only be able to absorb small amounts of information at one time. Sufficient time should be allocated to listening rather than talking. Listening to the concerns of the family and then providing honest but encouraging answers will help retention of the information provided, and build respect and trust, the two vital emotions for acceptance of the operation.
• The second opportunity for community-based counselling is likely to arise either just before, or on the day of, the surgery. At this time a visit to the family to remind them and, when needed, to provide transport to the surgical site can be helpful. This will also provide an opportunity for further counselling.
• Community health workers or eye ambassadors should not get discouraged if people initially refuse surgery. The decision to have surgery is not easy. A kind, encouraging and yet persistent attitude is needed. Multiple interactions and counselling before the outreach date may be needed to ensure that these individuals and their families have additional opportunities to accept surgery.
• Finally, it is critical that patients and families know exactly where to report for surgery, and when. It’s always a good idea to get patients and families to repeat this information to help ensure that it is clearly understood.

Basic messages to give to a patient undergoing trichiasis surgery

Adapted from Organizing trichiasis surgical outreach – a preferred practice for program managers. International Coalition for Trachoma Control

• “Your eyelashes have turned inwards and are rubbing on your eye, causing pain and discomfort.”
• “The eyelashes rubbing in your eye can damage your eye and lead to blindness.”
• “There is a surgical procedure that can be done to return the eyelashes to their normal position and stop the rubbing of the lashes.”
• “The surgical procedure is done by trained health workers and is available (place and date)”
• “The cost of the surgery is ….”
• “For surgery, you (the patient) will have a needle ‘stick’ (injection) near the eyelid to make the area numb/pain-free”
• “You (the patient) need to lie flat and still throughout the procedure, which takes not more than 20 minutes per eye.”
• “After surgery, the operated eye will be bandaged for 1 day.”
• “If both eyes are operated, someone will need to guide you (the patient) back home (depending on the outreach location).”
• “After the bandage is removed the next day, you (the patient) can resume all normal activities.”
• “Follow up after surgery is important. There will be 3 visits: the day after surgery, 2 weeks later, and 3-6 months later.”

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