Will my child see me again? Addressing children’s vision impairment through surgeries, optical correction, and low vision services in Northern Malawi

Abstract

Background

Blindness and low vision in children remain significant public health concerns, particularly in low- and middle-income countries. These conditions are often underdiagnosed and undertreated due to limited access to specialized services, spectacles, and assistive devices, posing critical challenges to health equity. The Childhood Blindness and Low Vision Programme (CBLVP) in Northern Malawi, Africa aimed to address these gaps through capacity building, advocacy, improved access to regular eye health and low vision assessments, and the provision of spectacles and low vision devices. This article reports on the activities and outcomes of the CBLVP, implemented between 2022 and 2024.

Methods

Activities included establishing clinical services at a government referral eye hospital, conducting outreach screenings and assessments, and building capacity through training and mentorship. Advocacy efforts engaged stakeholders—including government officers, parents, teachers, and disability organizations, to promote awareness, increase service uptake, and provide basic skills for supporting children’s use of vision at school and home. Programme monitoring drew on routine service records and feedback from stakeholders and beneficiaries, capturing key achievements and identifying challenges to inform future service improvement.

Results

A total of 2,054 children were served; among these, 370 (18%) received glasses, 70 (3.4%) received low vision services, and 96 (4.7%) underwent cataract surgery. Spectacles and low vision devices were reported to improve children’s visual status, enabling better educational and vocational performance. Awareness campaigns, including radio and social events, increased visibility and service uptake, particularly among persons with albinism. Stakeholders highlighted that the absence of a regular screening and admission policy led to some children with low vision being misclassified and placed in Braille-based programs, despite being capable of learning through print.

Conclusion

The programme demonstrated that children’s vision services can be comprehensively integrated through school screening and hospital-based services. To improve service delivery, future initiatives should emphasize early identification and ensure that all children with suspected visual impairment are screened before placement in mainstream or special education settings.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12913-026-14639-3.

Background

Blindness and low vision in children remain significant global eye-health concerns, disproportionately affecting individuals in low- and middle-income countries (LMICs) [1, 2]. Both conditions remain underdiagnosed and undertreated due to limited access to specialized services and devices. According to the most recent estimates [1], globally, 1.02 million children were blind in 2020, and probably three times this number had low vision. The burden tends to be greater in LMICs and underserved rural populations, such as women and children, migrants, Indigenous peoples, and persons with albinism [3]. Unfortunately, the widely accepted strategies for achieving Universal Eye Health Coverage (UEHC) assume equity across all policies and may not adequately address disadvantaged communities [4]. There is a need to make a deliberate effort in eye care, to address access barriers [5, 6] and reach those often considered “unreached”. Malawi in southern Africa is one country that had children’s eye services mainly delivered in one region of the country. Despite the scarcity of country-wide data on blindness and low vision in Malawi, studies have shown that a large proportion of causes are reversible (either preventable or treatable) [7–10], and that children with disabilities face persistent and systemic barriers to attending, progressing, and learning in school [11–13]. There is overwhelming evidence by Burton et al. [1], in a commission of Global Eye Health, that educational performance for children was linked to vision. Children with vision impairment had poorer academic outcomes and were more likely to be excluded from schools and more likely to drop out of school, and this was also observed in Malawi [8]. Simple interventions such as screening and providing spectacles to children with visual impairment are well-documented to improve educational performance. [14–16]. Yet, unless adequately addressed, these interventions are rarely a reality for most children in Southern Africa, where lack of access to glasses and low vision devices, coupled with high cost, contribute to challenges in obtaining these. For example, Malawi, with a population of approximately 20 million, and three regions (Supplementary File 1), has only 15 ophthalmologists and approximately 100 midlevel ophthalmic personnel (optometrists, optometry technicians, ophthalmic clinical officers) and, by 2021, had not yet established low vision services in the Northern part of the country, as part of regular eyecare, despite having a tertiary eye hospital there. It was for this reason that the “Childhood Blindness and Low Vision Program (CBLVP)” was initiated in 2022 in Northern Malawi, by the Blantyre Institute for Community Outreach (BICO) [17] with support from Fight for Sight and Wilde Ganzen (Netherlands), to set up children’s low vision services, as part of comprehensive eye-care, and positively contribute towards the 2030 Eye Health Agenda.

In terms of programme setup and community engagement, initial activities included engaging stakeholders, securing a dedicated low vision clinic space at the eye hospital, and equipping the clinic with essential tools. A trained low vision therapist and optometry technician were appointed to deliver services at the clinic, in coordination with the Ophthalmologist. Capacity building was prioritised through on-site and online training of all optometrists and optometry technicians in Northern Malawi. Community awareness was promoted through radio, TV, brochures, and advocacy meetings. One Resource Centre (Ekwendeni), which served as a school for a large number of children with visual impairment, was specifically targeted for regular programme activities, given its role in providing integrated education for children with visual impairment from the entire northern region. In an integrated school, students with special needs are placed in regular classrooms, but they are expected to adapt to the existing curriculum and teaching methods. Collaborative school screenings and referral pathways to the hospital were established to ensure children with visual impairments could access appropriate services.

Methods

Programme setting

The 3-year project (2022–2024) was based at the Mzuzu Central Hospital, a tertiary eye hospital serving a catchment population of 2 million people across six surrounding districts in Northern Malawi (Supplementary File 1).

Programme scope and reporting approach

This article presents a structured report of activities from the Program, using an approach that summarized service data and stakeholder feedback.

Population reached

Though the program reached adults and children, this article focuses on children only.

Children were defined as individuals aged 18 years or younger, following Malawi’s national guidelines. In line with child blindness program preferred practices, all children in primary schools and resource centres, where some may be up to 18 years, are included to ensure comprehensive service coverage. Sources of children identified were through school-based screening, resource centre assessments, hospital in and outpatients, and other special organized outreach clinics. The targeted main Resource Centre (Ekwendeni) is located 30 km away from Mzuzu city, where the CBLVP was based at the eye department. The centre runs an inclusive education programme where visually impaired children learn alongside sighted peers, and also receive tailored coaching within the resource centre by special needs teachers. Approximately 400 children attend the integrated school, among whom 50 belong to the resource centre. The children in the resource centre board full-time at the school, staying in hostels, with parents dropping them off at the start and collecting them at the end of each term, lasting for 3 months. Follow-up activities for this included assessment of children’s current vision, use of spectacles and low vision devices, learning medium, classroom positioning, and monitoring of eye condition.

Data collection

Service data were routinely recorded through programme monitoring and during actual visits. Informal insights were gathered, as described in the Programme Monitoring section, below.

Programme Monitoring section.

In addition to routine service data collection, programme monitoring activities were conducted to gather additional insights and stakeholder feedback. These included a desk review of programme reports and service data, field visits to service delivery sites, and informal consultations with parents, teachers, and key stakeholders, such as the Association of Persons Living with albinism (APAM).

Data analysis

Descriptive statistics were using clinical records with extra information to summarize service data. Informal qualitative insights from stakeholder feedback and field observations were summarised narratively.

Results

Between 2022 and 2024, the program attended to 2,054 children. Screening and outreach activities were conducted at 213 primary schools and resource centres across Northern Malawi during the programme period, while walk-ins reported directly at the hospital. The age distribution of the children seen (N = 2054) is shown in Fig. 1.

Fig. 1.

Age distribution of children seen (N = 2054)

The mean age was 11.0 years; the median was 11.0; and the range was 1–18 years.

Their gender, a summary of the clinical diagnosis, and management are shown (Table 1).

Table 1.

Gender of children, clinical diagnosis, and management

Characteristic	Category	Count	Percentage
Sex
1	F	1155	56.2
2	M	899	43.8
Diagnosis
1	Allergic Conjunctivitis	1168	56.9
2	Myopia	470	22.9
3	Cataract	96	4.7
4	Albinism	93	4.5
5	Hyperopia	75	3.7
6	Squint	56	2.7
7	Pseudophakia	44	2.1
8	Glaucoma	30	1.5
9	Cornea Scar	12	0.6
10	Ptosis	6	0.4
11	Optic Atrophy	4	0.2
Management
1	Medication	1191	58.0
2	Received glasses	370	18.0
3	Advice to get glasses	209	10.2
4	Surgery	147	7.3
5	Low Vision Device	70	3.4
6	Follow up Low Vision Assessment to determine need	38	1.9
7	Counselling where vision could not be improved	29	1.4

More girls (56.23%) than boys were seen.

Allergic conjunctivitis (56.9%) and myopia (22.9%) were the most common diagnoses.

Almost all children with allergic conjunctivitis had normal vision or mild visual impairment. Glasses were the most frequent intervention, followed by medication, low vision devices, and cataract surgery.

The most planned and desired interventions were the distribution of glasses, low vision devices, and facilitating cataract surgeries. Overall, 370 (18.0%) received glasses, 70 (3.4%) received low vision devices, and 96 (4.7%) received cataract surgery and/or glasses, and low vision devices. Figure 2 shows the sex distribution by key interventions, and Table 2 presents annual trends in children receiving glasses, low vision devices, and cataract surgery.

Fig. 2.

Sex distribution for key interventions

Table 2.

Annual trends in children receiving glasses, low vision devices, and cataract surgery

	Received glasses (N = 370)			Received Low vision devices (n = 70)			Had cataract Surgery plus low vision follow-up (n = 96)
	Male	Female	Total	Male	Female	Total	Male	Female	Total
	No (%)	No (%)	No (%)	No (%)	No (%)	No (%)	No (%)	No (%)	No (%)
Year 1	41 (11.1)	104 (28.1)	145 (39.2)	6 (8.5%)	7 (10)	13 (18.6)	17 (17.7%)	8 (8.4)	25 (26)
Year 2	50 (13.5)	64 (17.3)	114 (30.8)	16 (22.9)	13 (18.6)	29 (41.4)	18 (18.8%)	13 (13.5%)	31 (32.3)
Year 3	54 (14.6)	57 (15.4)	111 (30.0)	16 (22.9)	12 (17.1)	28 (40)	27 (28.1%)	13 (13.5)	40 (41.7)
Total	145 (39.2)	225 (60.8)	370 (100.0)	38 (54.3)	32 (45.7)	70 (100.0)	62 (64.6%)	34 (35.4)	96 (100.0)

Among children with refractive errors who received glasses, 225 (60.8%) were girls and 145 (39.2%) were boys. For low vision devices, 54.2% of recipients were boys and 45.8% were girls. Among children who underwent cataract surgery, 62 (64.6%) were boys and 34 (35.4%) were girls. Service uptake for cataract surgery gradually increased over the three years; however, the trend consistently showed a higher proportion of boys undergoing surgery each year.

Lessons from desk review and field engagement

The 5-day field visits (by all authors) conducted at the end of the project, included a range of activities to complement findings from the programmatic reports.

On Day 1, the team visited Ekwendeni Resource Centre to assess children (following earlier assessment and corrections), engage in advocacy with parents and teachers, and disseminate project findings. Assessments covered visual acuity, use of spectacles and devices, learning media, classroom positioning, and underlying eye conditions (Tables 3 and 4).

Table 3.

Clinical diagnosis of children at the resource centre

	Clinical Diagnosis	Frequency(N)	%
1	Albinism	9	28.1
2	Corneal scars	7	21.9
3	Glaucoma	3	9.4
4	Optic atrophy	3	9.4
5	Unoperated Bilateral Cataract	2	6.3
6	Micro-cornea	2	6.3
7	Posterior capsule opacity (PCO)	2	6.3
8	Complicated cataract	1	3.1
9	Myopia	1	3.1
10	Phthisis bulbi	1	3.1
11	Pseudophakia	1	3.1
Total		32	100

Table 4.

Mode of learning, whether using print, braille, wearing glasses, or using LVDs

	Frequency (No.)	%
Learning in Print, Braille, or both
Print	17	94.4
Both	1	5.6
Wearing Glasses
Yes	14	77.8
No	4	22.2
Using Low Vision Devices if prescribed
Yes	10	55.5
No	8	45.5

On Day 2, nine trained optometrists were supervised at the eye hospital (by K.K and K.V.D) to enhance service quality and refine assessment techniques. Days 3 and 4 involved discussions with the optometrists to review field observations, identify service strengths and gaps, and refine clinical practices. The final day (day 5) brought together program implementers, optometrists, ophthalmologists, hospital management, and other key stakeholders (Table 5) to review project outcomes and provide feedback to strengthen service delivery, ensure sustainability, and enhance integration of low vision care into existing health and education systems.

Table 5.

Key stakeholders and their roles

Organization	Role	Number	Gender
Mzuzu Central Hospital Eye Department Management, Ministry of Health	Involved in sustaining the Low Vision activities beyond the project period	2	1 Male & 1 Female
Mapale Health Centre /Ministry of Health District office, Mzuzu	Involved in integrating eye care within the Universal Health Coverage	2	1 Male & 1 Female
Mzuzu Government Secondary School	Specialist itinerant teachers who take on low vision learners once they have left the resource centres	1	Female
Malawi Council for Disability Affairs (MACODA)	Civil Society responsible for disability affairs in Malawi	1	Female
Association of People Living with Albinism in Malawi (APAM)	Civil Society involved with rights of persons with albinism	1	Male
Beyond Sun Care	Civil Society organization implementing activities for persons with albinism	1	Female
Blantyre Institute for Community Outreach BICO	Eye NGO spearheading Low vision activities in Malawi	5	2 Males & 3 Females
Northern Education Division (NED), Ministry of Education	Responsible for formulating and implementing policies for children with special needs	1	Male
Consultant	Global Low Vision Consultant on the project	1	Female
Community Radio	Diffusion of rumours and myths about albinism and low vision	2	1 Male, 1 Female
Total		17	7 Males, 10 Females

Table 3 shows the diagnosis of 32 children with low vision who were seen, during the final visit, at Ekwendeni Resource Centre. There were 17 boys (53.1%) and 15 girls (46.9%), and their ages ranged from 6 to 18 years, with a mean of 12.5 years.

There were more children with albinism (28.1%) than any other condition, followed by cornea scars (21.9%).

Among the 32 children, 18 were categorized as having low vision (needing glasses and low vision devices), and 14 were categorized as being blind, and needing braille for learning. 3 children had undergone cataract surgery and were categorized as low vision, and 2 girls with cataracts were not operated on (as parents had refused), and these were among those listed as blind and learning in braille.

Table 4 shows the mode of learning (learning media) that children with low vision were using, during the final evaluation, whether they were wearing glasses (if prescribed), and/or using LVDs (if prescribed).

It should be noted that at the start of the project, no single child was wearing glasses and none had ever been prescribed LVDs, and teachers had very little knowledge of the use of glasses and LVDs in improving children’s learning and providing access to print for the vast majority of children. As a result, some children were inappropriately using Braille, instead of print. The lack of an admission policy that required children being assessed by an eyecare worker before being admitted to a resource centre, was one of the reasons why this was common practice.

The uptake of glasses improved from 0% (baseline) to 77.8%, while the uptake of LVDs improved from 0% to 55.5% over 3 years.

Regardless of the class grade the children were in, print was the most common means (94.4%) that teachers used to teach children with Low vision.

Parents and teachers reported improved learner performance and expressed strong support for ongoing services.

Despite most learners initially using braille, upon initial assessment of the use of print, teachers were advised to transition the children’s learning from braille to print, and they successfully did so.

Table 5 shows the characteristics and roles of the key stakeholders who were included in the final dissemination of project findings.

Overall, four key themes were identified: (1) improved awareness and acceptance of services; (2) satisfaction with glasses and low vision devices (LVDs); (3) barriers, including stigma and transport costs; and (4) the need for integration of low vision care into national systems.

Stakeholders and parents indicated a persistent lack of awareness about low vision and an unclear referral system between teachers and eye-health workers. Additionally, some parents remained uncertain about the benefits of interventions, perpetuating myths such as “glasses worsen vision,” “cataract surgery causes blindness,” or “vision loss is caused by witchcraft.” Stakeholders highlighted the absence of a clear screening and admission policy. This gap resulted in some children with operable cataracts being admitted unnecessarily to special education. Once a child was admitted, withdrawing them was not feasible.

Finally, teachers and parents were often unaware of where to obtain replacements for lost glasses and low vision devices.

Discussion

The project embarked on an agenda to establish a childhood blindness and low vision program in Northern Malawi, a predominantly rural and hard-to-reach region with limited prior child eye health services and resource constraints, by integrating the principles of Universal Health Coverage (UHC) [18, 19] into its framework. This description refers to rural schools’ catchment areas served through outreach, where transport barriers and limited local eye care services persist, despite the relative accessibility of central sites such as Mzuzu and Ekwendeni.

This approach aimed to ensure equitable, accessible, and high-quality eye care services for children. Our results show that the programme provided interventions (optical correction, surgery, and low vision devices) with the potential to improve daily functioning and educational participation. However, formal quality of life or visual function measures were not collected.

By integrating service delivery with education and community engagement, the programme demonstrates how targeted interventions can help address service gaps for vulnerable populations, supporting the broader goal of leaving no one behind.

The strength of the project lay in its ability to engage diverse stakeholders, including BICO, the Ministry of Education’s Special Needs Department, the Ministry of Health, and persons with albinism. This collaborative approach was further enhanced by the involvement of specialized expertise in low vision (K.V.D), whose guidance ensured that the project incorporated global best practices while tailoring solutions to the unique challenges and needs of the local context.

The fact that children identified benefited from various services (Fig. 1) highlights the programme’s reach and its role in addressing unmet needs within the target population.

Annually, children with cataracts, were able to access services within the region. Prior to this, pediatric cataract services were only available in the southern part of the country, over 1,200 km away from the furthest points in Northern Malawi. This distance, coupled with known barriers [20] such as lack of awareness about available services, transportation challenges, and high opportunity costs, had historically prevented parents from seeking care for their children.

The increased number of persons with albinism (PWA) accessing services is encouraging, as it demonstrates that some of the systemic, cultural, and socio-economic barriers preventing this vulnerable group from attending eye care services were addressed.

Persons with albinism in Malawi face significant stigma and discrimination rooted in myths and superstitious cultural beliefs [21–23], particularly around the use of their body parts and associated rituals, which leave many living in fear of violence or even death. This societal discrimination extends to schools and other social settings, creating psychological barriers that discourage persons with albinism from seeking essential eye and health services. Additionally, widespread misinformation, such as the belief that eyeglasses worsen vision, further reduces service uptake among this vulnerable population.

Beliefs that spectacles worsen vision may be rooted in past experiences with poorly prescribed or donated spectacles, lack of awareness regarding proper correction, and broader community misconceptions about the use of spectacles in children.

The observed gender imbalance in children accessing cataract surgical services -twice as many boys had surgery as girls (Table 2), is of concern and was reflected both in programme data and in individual cases observed during follow-up.

Several studies, including systematic reviews with meta-analyses [5, 20, 24–28], have highlighted significant gender disparities in all-cause blindness, severe vision impairment, cataract surgery coverage, and trachoma treatment coverage, particularly in low- and middle-income countries. Women are disproportionately affected, exhibiting higher prevalence rates [1], yet they are less likely to access eye care services compared to men.

The results do not only apply to adult women, but to girls as well. Though biological plausibility to some extent explains the high prevalence of cataracts in boys than girls [1, 29], the less surgery attendance among girls is often explained by social determinants [1], that hinders them from attending services. The fact that outreach was often used to assess children may have resulted (overall) in more girls being assessed than boys.

Cultural norms often prioritize boys over girls in accessing healthcare. Families, especially in northern Malawi, where marriage is patrimonial, may allocate limited resources to boys’ health needs, believing they will support them in old age. In areas where girls are less likely to attend school, school-based screening may not reach them, leaving their conditions undetected.

Even though mothers may be willing to advocate for their daughters’ health, many lack the financial resources and education necessary to influence such decisions. Kalua [8, 30] found that educated mothers were more likely to have access to media and better understand the negative effects of illness on the child and the importance of seeking medical care early. Such mothers did not see distance as a barrier, as they could pay for and justify the costs. The importance of maternal education has also been reported in other studies [31–33].

The high prevalence of corneal scars likely reflects known risk factors in this setting, including vitamin A deficiency, trauma, and infections such as measles, which remain important public health concerns in Malawi.

For the two girls with unoperated cataracts in the resource center (Table 3), whose parents refused permission for surgery, there is little that can be done without an appropriate legal framework. The systemic and social barriers, combined with inadequate legal frameworks, perpetuate a cycle of neglect and discrimination that infringes on these girls’ fundamental rights to health, education, equality, protection, and autonomy. Addressing these issues requires a multi-faceted approach, including policy reforms, advocacy for gender equity, and the establishment of child protection mechanisms that prioritize the best interests of the child.

The shift from Braille to Print (Table 4) for many children indicates that early assessments and recommendations may have had a significant impact on teaching methods. The uptake of glasses and low vision devices prescribed was very low in the first year low, but showed promising improvements in year 3. One of the main reasons for improvement was the increased awareness of caregivers, children and teachers. The lack of clear pathways for obtaining replacement spectacles and low vision devices remains a critical sustainability challenge. Addressing this will require strengthening referral and follow-up systems, establishing affordable and accessible supply chains, and embedding child eye health into routine education and health services to ensure continuity of care.

More advocacy is needed to convince the government to support a clear admission policy, also financially. Preventing unnecessary Braille use saves money as special skills and books are then only needed for a small percentage of children and these savings could be used to sustain part of the services.

While no formal policy changes were enacted during the project period, engagement with the Ministries of Health and Education strengthened collaboration and raised awareness, building momentum for future integration of child eye health services into routine education and health systems.

Limitations

These findings should be interpreted in view of the limitations below. The findings presented are rooted in a specific socio-cultural and geographic context and may need to be adapted before best practices can be applied in other areas. Detailed analysis of refractive error, low vision, and surgical outcomes was beyond the scope of this report and will be presented in a follow-up publication.

The program benefited from consistent resources (human resources, materials, and logistical support), replication in the absence of such resources may prove challenging. Nevertheless, in starting or scaling up a similar program, essential components should include integrated hospital and school-based screening, capacity building for local providers, continuous access to affordable glasses and low vision devices, and coordinated referral and follow-up pathways.

Conclusion

The Childhood Blindness and Low Vision Program in Northern Malawi addressed key gaps in service availability and reached children who previously lacked access to appropriate care. However, systemic barriers remain, including limited awareness and service delivery challenges. Strengthening collaboration between the health and education sectors and embedding routine visual assessments in national guidelines could further improve outcomes and contribute to more sustainable child eye health services.

Supplementary Information

Below is the link to the electronic supplementary material.

Abbreviations

APAM

Association of Persons with Albinism in Malawi

BICO

Blantyre Institute for Community Outreach

CBLVP

Childhood Blindness and Low Vision Project

IRB

Institutional Review Board

KIM

Key Informant Method

LMIC

Low- and Middle-Income Countries

LVDs

Low Vision Devices

MACODA

Malawi Council for Disability Affairs

MOE

Ministry of Education

MOH

Ministry of Health

NED

Northern Education Division

PWA

Persons with Albinism

SNED

Special Needs Education Department

UEHC

Universal Eye-Health Coverage

UHC

Universal Health Coverage

Author contributions

K.K. designed the project, conducted data analysis, interpreted results, and wrote the initial draft E.S. collected data and conducted data analysis. H.M., T.C, P.M., C.M., and B.C conducted data collection. K.V.D. (Karin van Dijk) conducted training sessions and assessments. All authors read and approved the final manuscript.

Funding

The project was funded by Stichting Lions Fight for Sight Netherlands (part of the Dutch Lions, which is a branch of the International Lions Organization) and Wilde Ganzen Foundation (A Dutch-based NGO).

Data availability

Data that support the findings of this study contain patient information. A file of De-identified data has been provided.

Declarations

The project adhered to the Declaration of Helsinki.

Ethics approval and consent to participate.

This was a service delivery project. Permission for the project was obtained from the Ministry of Health and Education departments through the Northern Region Special Needs Education Committee. Informed consent was obtained from parents and teachers, and ascent was given by the children.

Consent for publication

Taken.

Competing interests

The authors declare no competing interests.