What do eye care workers do when their patients go blind?

Abstract

Sometimes even with the best efforts by the eye care worker (ECW), patients cannot be stopped from losing vision even in the best of centers anywhere in the world. However, in developing countries, most vision loss happens in rural and suburban areas away from where ECWs are majorly located due to poor facilities, adverse living conditions, and poverty. Once irreversible blindness happens, rehabilitation should follow. However, the numbers of those who are not referred for rehabilitation by far outstrips those who are, for various reasons. To find out why this is so, 150 ECWs with 1:2 M:F ratio were contacted through Google links sent through WhatsApp groups. Glaucoma was statistically the commonest cause of irreversible blindness (χ² = 66.17, p-value < .0001) mostly from late presentation (n = 146 of 150 responses, 97.7%). When patients go blind, most (n = 132, 87.4%) of the ECW advise them to go to a blind school (81.2%). Only about a quarter of the respondents properly ensure that they go. A third admitted (n = 78, 39%) that knowing the patients personally improved their willingness to refer. Many do not think the government is doing enough to help the blind (n = 118, 78.7%). Even though many ECWs have given sensitization talks on blindness (124 of 164 responses), very few focus on what happens after blindness occurs (42.4% of respondents). A third of the ECW admitted to not doing enough for the blind in their practice (n = 51, 34%). Majority have, however, heard about The Lens Eye Clinic (TLEC) rehab center, one of the foremost rehabilitation centers for the blind in Nigeria (n = 103, 68.7%). ECW should ensure those who live in rural areas have poor socioeconomic background, less educated, female, elderly, or born blind should have regular screening and awareness programs in the areas of practice to catch the condition on time with provision made for early counseling and support services.

Keywords

Blind eye care workers glaucoma low vision Nigeria TLEC rehab student referral form vision visual rehabilitation

Introduction

Despite concerted efforts, blindness remains a public health problem feared and dreaded by all especially in the developing world where facilities may not be as widespread or as funding as consistent. Sometimes even with the best efforts by the eye care worker (ECW), patients either cannot be helped to see better or cannot be stopped or prevented from losing vision even in the best centers anywhere in the world.

As ECWs, before people completely lose vision, it is important to remember that they have battled a lifetime or many years of poor vision for which they have already spent in some cases a small fortune or even all they had or borrowed. Empathy is therefore important in dealing with these patients when managing them.

Worldwide, 285 million are visually impaired of which 39 million people are blind (Kyari et al., 2009). Blindness is usually associated with increasing age, being female, poor literacy, and residence in the North as indicated in a national survey in Nigeria (Kyari et al., 2009). Some of the common conditions documented to be responsible for eventual irreversible blindness include primary open angle glaucoma (Kalaycı, 2020; Oluleye et al., 2006; Richard, 2010), age-related macular degeneration in adults (Flaxman et al., 2017; Nwosu, 2011), congenital corneal or other congenital ocular conditions in children, likepor or late treatment of cataract or glaucoma (Huh et al., 2018; Solebo et al., 2017; Whitcher et al., 2001), among others. These may be responsible for up to 20% of those who become irreversibly blind (Kyari et al., 2009). Very few lose vision suddenly, but it can tragically happen following violent ocular trauma (Abdull et al., 2009; Pascolini & Mariotti, 2012) with vision loss happening in both eyes suddenly in extreme cases.

ECWs have the responsibility of preventing blindness and maintaining good vision. However, most vision loss happen in rural and suburban areas away from where ECWs are majorly located in large cities. It is documented that most vision loss happens to those who are not able to access eye care in rural areas (Chen et al., 2003). The reasons for this include substandard eye care facilities and adverse living conditions and poverty in these rural areas (Gilbert et al., 2008). Due to these reasons, most may present late to the ECW which ultimately worsens the outcome (Kastner & King, 2020; Motlagh & Pirbazari, 2016). In other cases, it could be quackery (Asuquo et al., 2014) or poor management or lack of uptake of surgical or medical advice for the condition in good time that may be responsible.

However, blindness is not irreversible in all cases and a sizable number can still regain or have their vision enhanced utilizing medical and surgical methods (Ebeigbe & Emedike, 2017). However, in some cases, blindness is irreversible. The immediate thing that happens following irreversible blindness is the grieving period starting with denial (Kopp, 2014; Rees et al., 2009) with the patient in question usually taken to many places which could include prayer houses, native doctors and several other eye care practices in search of a cure, and so on. Once blindness happens however, it is advocated that steps be taken to ensure they get rehabilitated as soon as the grieving period is over to adapt to the new condition so that they do not become a major liability to their family, community, and to themselves. This step should primarily be initiated by the ECW. However, Rehabilitation has never been a continuum of care in the eye care delivery model as seen in developing countries.

Rehabilitation methods usually should include teaching Braille literacy, independent living skills, orientation and mobility training, providing training in the use of assistive technology, typewriting, computer, smartphones, and support services. However, the numbers of those who are not referred for rehabilitation by far outstrips those who are, for various reasons (Park, 1999). These could range from ignorance on the part of the patients or even the ECW to poor acceptance of the new condition (which is more common among those who go suddenly blind). It has been anecdotally observed that ECWs are mostly or not sufficiently concerned about what happens to their patients when they note a lack of response or further response to their ophthalmic treatment strategy and low vision, or blindness occurs. The actions and inactions taken within that period when a patient goes blind are important and make a lot of difference in what eventually happens to the person who went blind. The purpose of this article is to seek perspectives of ECWs on this critical issue when their patient goes blind and what steps they should and/or have taken in the past in this regard so we have an idea of the magnitude of the problem so that proper recommendations can be made to relevant stakeholders including but not limited to the government.

Methodology

Between 1st and 24th of July 2021, a link to a Google form was shared on WhatsApp social media platforms related to ophthalmic practice in Nigeria with the aim of provoking responses from ECWs including ophthalmologists, optometrists, ophthalmic nurses, and among others concerning their reactions when a patient they have been taking care of goes blind. WhatsApp was used because it is considered the most popular online messaging platform worldwide with over 4 million users on it in Nigeria alone (Statista, 2021). In Nigeria, there are about 700 ophthalmologists and 5500 optometrists and about 2000 ophthalmic nurses (Premium Times, 2017). The numbers registered on WhatsApp are over 4 million of the 207 million Nigerians in 2021. Since it is an extremely popular application (Statista, 2021), it was reasonable to assume that at least 2% of ECWs would be on it based on proportion of 4 million in 207 million giving a figure of 162 possible ECWs who could respond here if they wanted to. The Google link which leads to the questionnaire was sent onto different WhatsApp platforms that had ophthalmologists, optometrists, and ophthalmic nurse memberships in it three times a day for 2 weeks by A.O.A. Response to the questionnaire was taken as consent and was stated as such on the questionnaire face page. All responses were sent automatically to the email address of the lead author AOA. All identifying tags were removed before sending them to the statistician. The University of Port Harcourt Research Ethics committee approved this study.

Low vision was defined functionally as a corrected visual acuity in the better eye of less than 6/18 to more than no perception of light in individuals with untreatable causes of visual loss. Blindness was defined as visual acuity worse than 3/60. Visual impairment was defined as a condition of reduced visual performance that cannot be remedied by refractive correction(spectacles or contact lenses), surgery, or medical methods leading to functional limitations like irreversible vision loss, restricted visual field, decreased contrast sensitivity, increased sensitivity to glare and decreased ability to perform activities of daily living like reading or writing. The data were analyzed using the SPSS Version 25 (IBM, Armonk, NY, USA) software. The responses were summarized using frequency and percentages. The distribution of responses by the groups of respondents was assessed with χ² analysis, and a p-value < .05 was considered significant.

Results

Following the uploading of a Google form link detailing all the questions of interest about what ECWs do when their patients go blind on ophthalmic-related WhatsApp social media platforms in Nigeria in July 2021, 150 responses (n = 150) were recorded over the 2 weeks it was posted making it have a 92.6% response rate. There was female preponderance of 2:1 (Supplemental Appendix Table 1). Majority of respondents were either ophthalmologists (116, 77.33%) or optometrists (14, 9.33%) and are located more in the southern part compared with the northern part of Nigeria.

Sectors where ECWs who responded work

Most of the respondents worked in government establishments (n = 119, 79.3%). About a quarter (n = 23, 15.3%) worked in private hospitals. Only eight respondents (5.3%) work in non-governmental organizations (see Supplemental Appendix Figure 1).

Ophthalmic subspecialities who responded

Of the ophthalmologists who responded, majority were general ophthalmologists (n = 62, 53.45%). This was statistically significant (χ² = 56.77, p-value < .0001) while others were pediatric ophthalmologists (n = 17, 14.66%), glaucoma (n = 13, 11.21%), anterior segment and retina (n = 7 each, 6.03%), and of the oculoplasty subspecialty (n = 4, 3.45%). There was only one low vision worker (0.86%). Others are as shown in Supplemental Appendix Table 1.

Cause of irreversible blindness found by ECWs

The most common cause of irreversible blindness encountered by responding ECWs among their patients was glaucoma (83.3%) and trauma (6.0%) followed by diabetic/hypertensive retinopathy (6.0%) and age-related macular degeneration (2.0%).

Way down on the list of common causes of irreversible blindness was retinal detachment and corneal ulceration, and so on (Supplemental Appendix Table 2). Government establishments had larger numbers of patients go blind from glaucoma (n = 101 in government vs n = 7 among non-governmental organizations [NGOs] vs 17 in private). This was statistically significant (χ² = 66.17, p-value < .0001).

Proportion of patients who go blind

The proportion of the patients who go blind in the practice of respondents per year ranged from <1% to 20% per year. However, it was between 1% and 5% in most cases (Supplemental Appendix Table 3).

Reasons given why patients go blind

It was the opinion of most respondents (471 responses on this question alone) that majority (n = 146, 97.3%) most commonly went blind because of late presentation. The progressive nature of the disease along (n = 108, 72%) with poor compliance to medications (n = 112, 74.2%) were also blamed. The least common reasons given were patient negligence, delay in surgical intervention, presence of congenital malformations, financial constraint, and use of local trado medical treatment. The larger proportion found in government establishment was statistically significant (χ² = 19.55, p-value = .0001) (Supplemental Appendix Table 4).

Where are these blind people advised to go for their education?

An overwhelming majority (n = 153, 77.2%%) of ECWs advise these patients to go to a blind school; however, only about a quarter follow them up to ensure that they get into one. No one, however, reported referring to an inclusive school. A few avoid seeing these patients or their parents once they see them go blind (n = 2, 1.4%). After a diagnosis of irreversible blindness however, less than a quarter are advised to go for a second opinion (n = 33, 21.9%). A small number tell them nothing can be done (n = 9, 6%).

Majority refer these patients to same state establishments for the blind (n = 108, 72%) while a third refer to out of state establishments (n = 45, 30%). The proportion of referrals was statistically significantly higher in the private sector, compared to the government sector (χ² = 23.51, p-value = .0021) (Supplemental Appendix Table 5).

When respondents were asked whether any blind establishments were within 100 km radius of their practice, majority said yes (n = 95, 62.9%); however, a quarter said not (n = 40, 26.5%). About 10% were not sure (n = 16, 10.6%). A few of them help to raise necessary funds (n = 8, 5.3%) which some have used their funds to help blind patients secure rehabilitation (n = 10, 6.6%). Two of the ECWs said they encourage the patients to go for spiritual help (1.33%) (Supplemental Appendix Table 5).

Can blind people still contribute meaningfully to the society if helped?

In terms of whether blind people can contribute meaningfully to the society as well as sighted people, majority agree (n = 148, 99%) (Supplemental Appendix Figure 2). However, many do not think the government is doing enough to help these vulnerable group (n = 118, 78.7%) (Supplemental Appendix Table 6). About 1.3%, however, think the government is doing very well in the care of the blind (Supplemental Appendix Table 6).

Have you ever given presentations directed at prevention of blindness through any medium?

Majority of respondents have given presentations through various media on prevention of blindness at one time or the other (n = 114, 76%) (Supplemental Appendix Figure 3), but the majority have never in their talks focused on what life after blindness occurs should be like or any preparations that should be made for it (n = 72, 63%). When respondents were asked whether they were doing the best they can for their blind eye patients, only a third, 46 (30.67%), think they are (Supplemental Appendix Table 7).

Have you heard about The Lens rehabilitation foundation for the blind (aka The Lens Eye Clinic rehab Nig, (TLEC (re)hab Nig)?

Even though majority of respondents have heard about TLEC (re)hab Nig (n = 103, 69%), just about only half have referred someone there to learn how to capably cope with blindness (n = 65, 43%).

Does knowing the person who went blind affect your response?

Up to 36% (n = 54) said no but 31.33% (n = 47) said yes it does affect their response as they want to do everything possible to help (Supplemental Appendix Table 8).

Discussion

In about 80% of cases, blindness is avoidable (Balarabe et al., 2014). So, when anyone goes blind especially from an avoidable cause and remains blind, it is even more heartbreaking. The effect of blindness is far reaching and affects the entire community. In the other 20% or so, blindness is inevitable to varying degrees, and these are the ones who need to be referred to have vision rehabilitation to be able to cope with life and be productive once again. Rehabilitation of anyone who goes blind particularly in children and young adults aims to increase their functionality and independence, remove too much lag in their education and improve their social interaction. If managed properly, they will achieve the same quality of life as that of normally sighted children. Early intervention is therefore very critical to reduce the social, economic, and psychological impact of visual impairment.

Why do people go blind?

Some of the reasons people go blind is plain ignorance, poor financial power, and poor accessibility to quality eye care at the right time and reckless use of medication (Phulke et al., 2017). The good thing is that if the cause of blindness is treatable/controllable, then they can at least have a better chance of regaining vision if they present themselves on time to a certified eye care facility. However, the factors mentioned above make more people go blind than should have.

Most common cause of irreversible loss of vision

There is a high proportion of avoidable blindness in developing countries like Nigeria, half of which is attributable to cataracts alone and uncorrected refractive errors are responsible for 57% of moderate visual impairment. Appropriate and accessible refraction and surgical services once provided will take care of these avoidable causes (Abdull MM, 2009). However, there are irreversible causes of blindness. These go blind even if they access eye care services (even the best of them, on time) due to the nature of the condition itself. However, if such conditions are detected early, blindness could be delayed with vigorous treatment and the person can enjoy a longer period of unimpaired vision or at least better quality of life with some vision at least. Conditions like glaucoma especially if it manifests in the first 4 months of life, or in the teenage years if it was not discovered or treated vigorously early enough, age-related macular degeneration, diabetic retinopathy, degenerative myopia, glaucoma especially the high pressure type and other ocular conditions that affect the cornea, the optic nerve, and the retina have the potential to lead to irreversible loss of vision, if care is not taken.

In this study, the ECWs stated that in their experience, the main cause of irreversible loss of vision was chronic glaucoma. Many workers have found this to be so too in various parts of the developing world including the northern and southern parts of Nigeria (Reis et al., 2022; Senjam, 2020) followed by diabetic retinopathy (Lightman & Towler, 2003) and corneal disease in that order. However, this is opposed to what obtains in the developed world where the highest cause of irreversible loss of vision is from age-related macular degeneration (Khandhadia et al., 2012; Segato et al., 1993).

Higher numbers are found to be blind from couching practices commoner in the northern parts of Nigeria due to relatively more risk (up to 3.8 times more) of developing cataracts due to exposure to higher ambient UVB radiation, higher temperature and less rain but relatively fewer numbers of skilled eye care workers when compared with the southern zones of Nigeria which have up to 4 times the number of eyecare workers than in the northeast even though their populations are not very different (Akano, 2017). This unequal and inadequate number of health care workers have led to higher numbers of irreversible visual impairment and blindness even from treatable causes in the northern zones (Rabiu, 2011).

This was not mentioned as an important cause in this study by respondents.

However, this is opposed to what obtains in the developed world where the highest cause of irreversible loss of vision is from age-related macular degeneration (Khandhadia et al., 2012; Segato et al., 1993).

What causes delay in presentation?

It is traditionally the duty of the doctor, this time, the ophthalmologist who is the leader of the eye care team to make the final decisions about what to do about any eye condition. It is appropriate that optometrists be able to make a diagnosis but not oversee the care of potentially blinding ophthalmic medical and surgical conditions but refer to see an ophthalmologist on time who by the very nature of their training will see to it that the eye(s) are kept in good working order. There are anecdotal instances of many patients attending clinics run by non-ophthalmologists for years with treatment given for glaucoma and no expert review by an ophthalmologist sought which has often directly lead to loss of vision especially when the patient was not referred on time. This should according to the law have consequences.

However, there are very many other factors that contribute to poor outcomes in these patients and not just who sees them. These range from educational and socioeconomic status of the patients (Kaushik et al., 2021). It is quite possible that these patients do not know better and so do not understand the prognosis of their ocular condition. Widespread community education through all means of communication will help fix this along with actively searching for those who have potentially blinding eye diseases.

Sometimes they cannot afford better. This is one of the compelling reasons why health insurance would have been particularly useful. In Nigeria, health insurance especially for those not working in organized setups like market women and farmers is non-existent unlike in some other settings (Habib et al., 2016). This makes the payment for services for these vulnerable cohorts, very arduous and difficult for expensive, chronic, and lifelong potentially blinding ailments. In addition, those who can access the national health insurance scheme are often confronted with out-of-pocket bills because of the out-of-stock syndrome which often plagues the inadequately funded and probably corrupt insurance scheme (El-Sayed et al., 2018). This makes loss of vision happen faster if the patient is poor and unable to afford surgery or medication. A systematic review published recently also found low evidence of equitable access to health care even among those who were insured in developing countries in sub-Saharan Africa (Artignan & Bellanger, 2021). It is clear that more work needs to be done by relevant stakeholders like federal and state government agencies to improve health insurance coverage equitably to help those who need to access eye care regularly to avoid going blind or get prompt help for timely rehabilitation. In addition, low literacy rates and the prevailing poor educational status have been shown to be related to higher blindness rates (Ulldemolins et al., 2012; Zhang et al., 2012).

In Nigeria, literacy rates are lower than expected looking at its moderately high per capita income which stood at 62.02% in 2020 (FAWCO, 2021). In fact, Nigeria has one of the world’s largest numbers of out of school children of over 13 million children (Giving Compass.org, 2018). This makes them vulnerable to vision loss. It is worse with females as only 59% of them complete high school when compared with 70% of males who complete in Nigeria (FAWCO, 2021). There are more reasons why vision loss is higher among the female gender. This include the cultural belief that women need permission to access services, women are less economically empowered, etc. Most people(up to 70%) in Nigeria live in rural areas where eyecare services are very limited with underutilization. Even the available ones are underutilized possibly due to ignorance and the cultural belief that treating certain ocular conditions could lead to blindness.

Studies have shown blindness affects those who are in the prime of their life so the loss of these people from being able to contribute to the economy is palpable (Adio & Onua, 2012). It is a well-known fact that the numbers that go blind also increase with increasing age (Zhang et al., 2012).

What should happen when patients go blind?

Ideally such should be referred for rehabilitation whether they can afford to do so or not with the government taking its rightful place in enforcing and most importantly funding this. Sometimes we find parents or guardians do not make any attempt to do the right thing for years thereby making the blind educationally disadvantaged Non-visual methods of carrying on with life in a beneficial way should be utilized and on time. In this study, a particularly sizable number (87.5%) (Supplemental Appendix Table 5) record that they refer patients who go blind to go for rehabilitation. These referrals were significantly proportionately more among private establishments than government. The reasons for this are not clear. We believe this may be related to the belief that those who access private care are better able to afford rehabilitation care. However, less than 10% make the effort to ensure the patient goes. The complete diagnosis should be communicated to the patient, and a second appointment should be offered in which the diagnosis and potential treatment options are discussed again. In this study, less than 20% refer for a second opinion; though in most cases, whether you formally refer or not, the patient usually still goes from one eye care center to the other looking for solutions. In general, visually impaired adults eligible for referral should be referred for the provision of low vision aids and patients with complex problems or extensive rehabilitative demands should be referred to a rehabilitation center (De Boer et al., 2005). However, there are many factors that affect this from taking place or at least cause it not to be taken up in a timely manner. One of which is poor referral systems. Until the patient begins to make active inquiries on their own, nothing happens.

Consumer factors

The blind patient may go into denial and find it exceedingly difficult to break out of it unless very consistent and persistent counseling is employed. Governments should make provisions to enforce this. The ECW should be conscious of this as it is commoner than realized and so the services of counselors, social services, and the clinical psychologists should be engaged as a routine to help them go through this stage fast. Some become suicidal too or may have psychological problems or worsen pre-existing ones. Other factors that contribute are ignorance of where to go, the same factor that led to the loss of the vision. Other factors include lack of financial power to go to or access where help can be found. The assistive devices required also are expensive and need replacement from time to time. Another factor is the fear exhibited by loved ones when they must release their loved ones to get rehabilitated; they worry that they could get injured or get lost or someone could take advantage of their wards due to their vulnerable status. They may, therefore, decide to keep them at home without bringing them for rehabilitation. This should be resisted for the sake of the children, and it should be understood that if a relation decides not to do something about their ward in terms of getting rehabilitated or educated, there is a law available that overrides their wishes and make them liable. However, such laws although present are not being enforced at the moment (Premium Times, 2019). It is available in developed countries and called the Individuals with Disabilities Education Act (IDEA) using the Expanded Core Curriculum (ECC) especially for those who want to go back to school (Disabilities, Opportunities, Internetworking, and Technology (DO-IT). (n.d.).). All children should be allowed to have good education even if they have any type of disability. All that is required is for the appropriate assistive devices be made available to them and the school be designed/adapted to their needs. In this study, most eye care providers did not think the government is doing enough in this regard.

Eye care provider factors

In Rivers state, Nigeria, for example, the population of 5.2 million currently is serviced by minimum 22 ophthalmologists all of whom are in the capital (Nigerian Finder, 2023). So even though the numbers meet the requirement of 4 per million, they are not equitably distributed to effectively prevent and control blindness. This makes it difficult for patients to have access to these professionals and promotes poor control of blinding conditions.

In this study, most eye care providers do not appropriately and consistently counsel their patients who have chronic ocular conditions that could lead to blindness. A sizable number do not engage in health awareness drives which could promote the knowledge of such information. In addition, up to a quarter of respondents have never given any ocular health awareness talk or programs (Supplemental Appendix Figure 3). Even among those who have, only one-third mentioned anything about the life after blindness occurs and what to do. One-third of the respondents feel they are, however, doing the absolute best they can for their patients. However, it is the duty of the ophthalmologist to make clear guidelines available for referral (see Supplemental Appendix). This is one important system laid down by the Dutch society of Ophthalmologist’s worth emulating by the Ophthalmological Society of Nigeria (OSN) (De Boer et al., 2005).

A similar referral sheet was developed by the Lens rehabilitation foundation for the blind (a tertiary center for training and resource for low vision and rehabilitation in Nigeria) and can be accessed in the appendix

Infrastructure factors

The lack of proper equipment and facilities has also contributed to many losing their vision in many developing countries including Nigeria as over 4 million could have had their blindness avoided if only there was better access to well-equipped manned eye care facilities. Most health care facilities at the grass roots have no functional eye care facility integrated into it (Aghaji et al., 2021).

Availability of proper rehabilitation facilities

Most people who are blind do not have access to rehabilitation after they go blind. A study has shown that only about 5% have undergone any sort of rehabilitation or adjustment that may be required for independent living of the over 4 million blind in Nigeria especially if they are older than school age (Okonji & Ogwezzy, 2018). This is despite the fact that ECWs refer to these centers. The reason for poor uptake by these patients could also be that the sort of rehabilitation that should be available to the older ones is very few. For instance, the TLEC rehab center for the blind (www.tlecrehab.org) may be the only one available in the country that has facilities to train in the use of applications that will give access to social media, the Internet, and all the information available worldwide in addition to teaching how to access Internet banking and audiobooks online which an older blind may find particularly useful to be able to adapt properly. This is quite different from offering Braille education and writing which may be the most common option available if they get referred to blind schools. If one is a professional and has reached the zenith of career before blindness happened, this will be quite useless and such training may not be acceptable to such cadre of blind. Rehabilitation centers like TLEC rehab Nig can help this group. In addition, learning Braille, although important, may not be the only media taught even to the young or teenage blind. Every modern means of communication and software applications should be taken advantage of to enable proper and more meaningful rehabilitation.

Centers like this where an ophthalmologist is usually in attendance to ensure that all admitted trainees for different specialized programs are supposed to be there should be set up in various parts of the country. To this end, this center is dedicated to training and willing to partner with any person or group of persons who may want to have training to set up such in any accessible area across Nigeria or Africa.

Conclusion

Those who are blind have the short end of the stick in developing countries particularly if they live in rural areas, have poor socioeconomic background, are less educated, are female, are elderly, or are born blind. Knowing therefore that these groups are vulnerable to blindness, regular screening, and awareness programs for potentially blinding conditions common in the areas of practice should be consciously conducted by ECWs targeting them to catch the condition early rather than when it is established and at the end stage. This will afford better treatment/control. Concerted efforts to screen children at every opportunity, for example, in well baby clinics, immunization centers when they present for other health matters or in schools, and so on should be embarked upon as a routine.

It is recommended that instead of avoiding or ignoring these patients or referring them to spiritual centers which a few ECWs do, more should be done to help the ones who could go blind in terms of referring them for counseling on time especially before they go blind and also when they eventually go blind. This is in addition to having a system where they are followed up by counseling and social services (in collaboration with regional rehabilitation centers) to ensure that each person who goes blind is encouraged to attend to allow them to be well adjusted to the new reality.

It is therefore recommended that referral for rehabilitation and support must be preceded by proper and precise diagnosis and treatment given so far. Consultation of an ophthalmologist for this is very much essential. No one should be referred without evaluation by an ophthalmologist (see Supplemental Appendix for a specimen sample of a referral sheet). Information about the blinding condition should be given to the patient orally as well as in writing. The ophthalmologist should mention the possibility of rehabilitation to the patient in the presence of a visual acuity <0.5 log MAR or Snellen visual acuity (VA) of 6/18 and/or visual field of <30 degrees in the better eye with a clear statement requesting for help and the type required. Visually impaired patients with a relatively simple request for help can be referred to a specialized optometrist/ophthalmologist/ophthalmic nurse who has been trained in providing such service, due to the paucity of ECWs who can actually help while visually impaired patients with more complex needs, for example, irreversible blindness are referred to a regional rehabilitation center like TLEC rehabilitation center (www.tlecrehab.org) or similar. Visually impaired and blind patients should be informed by the ECW about the existence of local patient organizations, for example, glaucoma societies, Nigerian Association for the Blind, Nigerian Association for the Disabled, The Albino foundation, and so on which help in information dissemination and medication either obtained cheaper or free to the indigent. Referral for rehabilitation is done by means of a structured letter with all relevant information inserted. see appendix. A copy of this letter should be reviewed by the family physician, and all other attending physicians which the person may be seeing (de Boer 2005). Comprehensive well-equipped rehabilitation centers should also be established in different areas in an equitable manner to minimize having to travel across the country with widespread and adequate investment in provision of assistive devices allowing for replacement/depreciation to enable them to have a better quality of life. TLEC rehab Nig, a regional training center, is willing to partner with government or any agency that wants to ensure this happens. This will go a long way to ensure equitable access to vision rehabilitation services across the country.

Supplemental Material

sj-docx-1-jvi-10.1177_02646196231154471 – Supplemental material for What do eye care workers do when their patients go blind?

Supplemental material, sj-docx-1-jvi-10.1177_02646196231154471 for What do eye care workers do when their patients go blind? by Adedayo Omobolanle Adio and Charles Obu Bekibele in The British Journal of Visual Impairment

Supplemental Material

sj-docx-2-jvi-10.1177_02646196231154471 – Supplemental material for What do eye care workers do when their patients go blind?

Supplemental material, sj-docx-2-jvi-10.1177_02646196231154471 for What do eye care workers do when their patients go blind? by Adedayo Omobolanle Adio and Charles Obu Bekibele in The British Journal of Visual Impairment

Supplemental Material

sj-pdf-3-jvi-10.1177_02646196231154471 – Supplemental material for What do eye care workers do when their patients go blind?

Supplemental material, sj-pdf-3-jvi-10.1177_02646196231154471 for What do eye care workers do when their patients go blind? by Adedayo Omobolanle Adio and Charles Obu Bekibele in The British Journal of Visual Impairment

Footnotes

Acknowledgements

The authors appreciate the Lens rehabilitation center for the blind and severely visually impaired (aka TLEC (re)hab Nig) for providing the framework upon which the concept for this work was made.

Author contributions

A.O.A. conceived the idea of the paper, designed, and distributed the Google form, collaborated with the statistician to analyze the data and wrote most of the paper. C.B. provided comments, read the draft, and revised the manuscript. All authors have approved the last version of the manuscript.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Adedayo Omobolanle Adio

Supplemental material

Supplemental material for this article is available online.

References

Abdull

M. M.

Sivasubramaniam

Murthy

G. V.

Gilbert

Abubakar

Ezelum

Rabiu

M. M.

, & Nigeria National Blindness Visual Impairment Study Group. (2009). Causes of blindness and visual impairment in Nigeria: The Nigeria national blindness and visual impairment survey. Investigative Ophthalmology & Visual Science, 50(9), 4114–4120. https://doi.org/10.1167/iovs.09-3507

Adio

A. O.

Onua

A. A.

(2012). Economic burden of glaucoma in Rivers State, Nigeria. Clinical Ophthalmology, 6, 2023–2031. https://doi.org/10.2147/OPTH.S37145

Aghaji

Burchett

H. E. D.

Oguego

Hameed

Gilbert

(2021). Primary health care facility readiness to implement primary eye care in Nigeria: Equipment, infrastructure, service delivery and health management information systems. BMC Health Services Research, 21, Article 1360. https://rdcu.be/cI3gT

Akano

O. F.

(2017). Vision health disparities in blindness and visual impairment in Nigeria: A review of the Nigerian National Blindness and Visual Impairment Survey. African Vision and Eye Health, 76(1), a345. https://doi.org/10.4102/aveh.v76i1.345

Artignan

Bellanger

(2021). Does community-based health insurance improve access to care in sub-Saharan Africa? A rapid review. Health Policy and Planning, 36(4), 572–584. https://doi.org/10.1093/heapol/czaa174

Asuquo

I. M.

Busuyi

H. M.

Umar

K. O.

(2014). The dangers of couching in southwest Nigeria. Malaysian Journal of Medical Sciences, 21(5), 60–65.

Balarabe

A. H.

Mahmoud

A. O.

Ayanniyi

A. A.

(2014). The Sokoto blind beggars causes of blindness and barriers to rehabilitation services. Middle East African Journal of Ophthalmology, 21(2), 147–152. https://doi.org/10.4103/0974-9233.129764

Chen

J. H.

A. L.

Sun

B. C.

J. J.

Xia

C. R.

Cui

T. T.

Zheng

Y. Y.

Y. B.

Zhang

R. X.

Yang

Sun

X. Y.

Zou

Wang

B. R.

(2003). [Prevalence of low vision and blindness in defined populations in rural and urban areas in Beijing]. Zhonghua Yi Xue Za Zhi, 83(16), 1413–1418. (In Chinese)

De Boer

M. R.

Langelaan

Jansonius

N. M.

Van Rens

G. H

. (2005). Evidence-based guidelines on the referral of visually impaired persons to low vision services. European Journal of Ophthalmology, 15(3), 400–406. https://doi.org/10.1177/112067210501500314

10.

De Boer

M. R.

Langelaan

Jansonius

N. M.

van Rens

G. H

. (2005). Verwijzing naar revalidatie bij blijvende visuele beperkingen; richtlijn van het Nederlands Oogheelkundig Gezelschap [Referral for rehabilitation in case of permanent visual handicap; guideline of the Dutch Society of Ophthalmology]. Nederlands Tijdschrift voor Geneeskunde, 149(27), 1502–1504.

11.

Disabilities, Opportunities, Internetworking, and Technology (DO-IT). (n.d.). What is the Individuals with Disabilities Education Act? https://www.washington.edu/

12.

Ebeigbe

J. A.

Emedike

C. M.

(2017). Parents’ awareness and perception of children’s eye diseases in Nigeria. Journal of Optometry, 10(2), 104–110. https://doi.org/10.1016/j.optom.2016.06.001

13.

El-Sayed

A. M.

Vail

Kruk

M. E.

(2018). Ineffective insurance in lower- and middle-income countries is an obstacle to universal health coverage. Journal of Global Health, 8(2), Article 020402. https://doi.org/10.7189/jogh.08.020402

14.

FAWCO. (2021). Literacy in Nigeria (SDG target 4.6). https://www.fawco.org/global-issues/education/education-articles/4623-literacy-in-nigeria-sdg-target-4-6

15.

Flaxman

S. R.

Bourne

R. R. A.

Resnikoff

Ackland

Braithwaite

Cicinelli

M. V.

Das

Jonas

J. B.

Keeffe

Kempen

J. H.

Leasher

Limburg

Naidoo

Pesudovs

Silvester

Stevens

G. A.

Tahhan

Wong

T. Y.

Taylor

H. R.

, & Vision Loss Expert Group of the Global Burden of Disease Study. (2017). Global causes of blindness and distance vision impairment 1990-2020: A systematic review and meta-analysis. The Lancet Global Health, 5(12), e1221–e1234. https://doi.org/10.1016/S2214-109X(17)30393-5

16.

Gilbert

C. E.

Murthy

G. V.

Sivasubramaniam

Kyari

Imam

Rabiu

M. M.

Abdull

Tafida

(2010). Couching in Nigeria: Prevalence, risk factors and visual acuity outcomes. Ophthalmic Epidemiology, 17(5), 269–275. https://doi.org/10.3109/09286586.2010.508349

17.

Gilbert

C. E.

Shah

S. P.

Jadoon

M. Z.

Bourne

Dineen

Khan

M. A.

Johnson

G. J.

Khan

M. D.

, & Pakistan National Eye Survey Study Group. (2008). Poverty and blindness in Pakistan: Results from the Pakistan national blindness and visual impairment survey. British Medical Journal, 336(7634), 29–32. https://doi.org/10.1136/bmj.39395.500046.AE

18.

Giving Compass.org. (2018). Nigeria has the largest number of out-of-school children in the world of-school children in the world. https://givingcompass.org/article/nigeria-has-the-largest-number-of-out-of-school-children-in-the-world?gclid=CjwKCAjw8sCRBhA6EiwA6_IF4VXM66r12br_inqnrC0aakLA7USNQZub3A8uMstWtb5mxenOukQvuBoCDEYQAvD_BwE

19.

Habib

S. S.

Perveen

Khuwaja

H. M.

(2016). The role of micro health insurance in providing financial risk protection in developing countries: A systematic review. BMC Public Health, 16, Article 281. https://doi.org/10.1186/s12889-016-2937-9

20.

Huh

G. J.

Simon

Grace Prakalapakorn

(2018). Causes of childhood blindness in Ghana: Results from a blind school survey in Upper West Region, Ghana, and review of the literature. International Ophthalmology, 38(4), 1415–1423. https://doi.org/10.1007/s10792-017-0600-9

21.

Kalaycı

(2020). Causes of blindness in the adult population in Somalia. Turkish Journal of Ophthalmology, 50(5), 288–292. https://doi.org/10.4274/tjo.galenos.2020.82504

22.

Kastner

King

A. J.

(2020). Advanced glaucoma at diagnosis: Current perspectives. Eye, 34(1), 116–128. https://doi.org/10.1038/s41433-019-0637-2

23.

Kaushik

Nawaz

Mufti

Qureshi

T. S.

(2021). Etiological spectrum of irreversible blindness in Kashmir in North India. Indian Journal of Ophthalmology, 69(10), 2630–2636. https://doi.org/10.4103/ijo.IJO_3818_20

24.

Khandhadia

Cherry

Lotery

A. J.

(2012). Age-related macular degeneration. Advances in Experimental Medicine and Biology, 724, 15–36. https://doi.org/10.1007/978-1-4614-0653-2_2

25.

Kopp

(2014). People who acquire disability may grieve their loss forever. Nursing Times, 110(49), Article 11.

26.

Kyari

Gudlavalleti

M. V.

Sivasubramanian

Gilbert

C. E.

Abdull

M. M.

Entekume

Foster

, & Nigeria National Blindness Visual Impairment Study Group. (2009). Prevalence of blindness and visual impairment in Nigeria: The National Blindness and Visual Impairment Study. Investigative Ophthalmology & Visual Science, 50(5), 2033–2039. https://doi.org/10.1167/iovs.08-3133

27.

Lightman

Towler

H. M.

(2003). Diabetic retinopathy. Clinical Cornerstone, 5(2), 12–21. https://doi.org/10.1016/s1098-3597(03)90015-9

28.

Motlagh

B. F.

Pirbazari

T. J.

(2016). Risk factors for late presentation of chronic glaucoma in an Iranian population. Oman Journal of Ophthalmology, 9(2), 97–100. https://doi.org/10.4103/0974-620X.184527

29.

Nigerian Finder. (2023). Population of Nigeria by states (2023 estimate). https://nigerianfinder.com/population-of-nigeria-by-states/

30.

Nwosu

S. N.

(2011). Age-related macular degeneration in Onitsha, Nigeria. Nigerian Journal of Clinical Practice, 14(3), 327–331. https://doi.org/10.4103/1119-3077.86778

31.

Okonji

P. E.

Ogwezzy

D. C.

(2018). Rehabilitation for independent living: Challenges and priorities of visually impaired older people in urban Nigeria. Journal of the Nigerian Optometric Association, 20(1), 45–54.

32.

Oluleye

T. S.

Ajaiyeoba

A. I.

Akinwale

M. O.

Olusanya

B. A.

(2006). Causes of blindness in Southwestern Nigeria: A general hospital clinic study. European Journal of Ophthalmology, 16(4), 604–607. https://doi.org/10.1177/112067210601600416

33.

Park

(1999). Vision rehabilitation for age-related macular degeneration. International Ophthalmology Clinics, 39(4), 143–162. https://doi.org/10.1097/00004397-199903940-00010

34.

Pascolini

Mariotti

S. P.

(2012). Global estimates of visual impairment: 2010. British Journal of Ophthalmology, 96(5), 614–618. https://doi.org/10.1136/bjophthalmol-2011-300539

35.

Phulke

Kaushik

Kaur

Pandav

S. S.

(2017). Steroid-induced glaucoma: An avoidable irreversible blindness. Journal of Current Glaucoma Practice, 11(2), 67–72. https://doi.org/10.5005/jp-journals-l0028-1226

36.

Premium Times. (2017). Nigerian nurses decry lack of suitable eyecare facilities. https://www.premiumtimesng.com/news/more-news/244907-nigerian-nurses-decry-lack-suitable-eyecare-facilities.html

37.

Premium Times. (2019). Ten things to know about Nigeria’s new disability law. https://www.premiumtimesng.com/news/headlines/307494-ten-things-to-know-about-nigerias-new-disability-law.html

38.

Rees

Fenwick

E. K.

Keeffe

J. E.

Mellor

Lamoureux

E. L.

(2009). Detection of depression in patients with low vision. Optometry and Vision Science, 86(12), 1328–1336. https://doi.org/10.1097/OPX.0b013e3181c07a55

39.

Reis

T. F.

Paula

J. S.

Furtado

J. M.

(2022). Primary glaucomas in adults: Epidemiology and public health – A review. Clinical & Experimental Ophthalmology, 50, 128–142. https://doi.org/10.1111/ceo.14040

40.

Richard

A. I.

(2010). Causes of blindness and low vision in Bayelsa State, Nigeria: A clinic-based study. Nigerian Quarterly Journal of Hospital Medicine, 20(3), 125–128.

41.

Segato

Midena

Blarzino

M. C

. (1993). Age-related macular degeneration. Aging, 5(3), 165–176. https://doi.org/10.1007/BF03324151

42.

Senjam

S. S.

(2020). Glaucoma blindness – A rapidly emerging non-communicable ocular disease in India: Addressing the issue with advocacy. Journal of Family Medicine and Primary Care, 9(5), 2200–2206. https://doi.org/10.4103/jfmpc.jfmpc_111_20

43.

Solebo

A. L.

Teoh

Rahi

(2017). Epidemiology of blindness in children (Erratum in: Archives of Disease in Childhood, 102(10), 995). Archives of Disease in Childhood, 102(9), 853–857. https://doi.org/10.1136/archdischild-2016-310532

44.

Statista. (2022). Forecast of the number of WhatsApp users in Nigeria from 2019 to 2028 (in millions). https://www.statista.com/forecasts/1146609/whatsapp-users-in-nigeria#:~:text=In%202021%2C%20WhatsApp’s%20user%20base,8.13%20million%20users%20by%202025

45.

Ulldemolins

A. R.

Lansingh

V. C.

Valencia

L. G.

Carter

M. J.

Eckert

K. A.

(2012). Social inequalities in blindness and visual impairment: A review of social determinants. Indian Journal of Ophthalmology, 60(5), 368–375. https://doi.org/10.4103/0301-4738.100529

46.

Whitcher

J. P.

Srinivasan

Upadhyay

M. P.

(2001). Corneal blindness: A global perspective. Bulletin of the World Health Organization, 79(3), 214–221.

47.

Zhang

Wang

Liu

Wang

Cao

Zhou

Liu

(2012). Prevalence of blindness and low vision: A study in the rural Heilongjiang Province of China. Clinical & Experimental Ophthalmology, 40(5), 484–489. https://doi.org/10.1111/j.1442-9071.2011.02682.x

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.05 MB

0.02 MB

0.31 MB