Children who are blind or have low vision: Sightsavers International

Children who are blind or have low vision:
Findings from recent research supported by
Sightsavers International
Sarah Elliott/Sightsavers
Sightsavers International works with partners in developing countries to support education for
children with visual impairment and to promote eye health and prevent avoidable blindness.
Several recent studies have been conducted in East Africa, South Asia and the Caribbean to
assess both the causes of visual impairment and the strengths and challenges of current
education services. This brief presents the main findings from this research.
Sharon (aged 16) and Dorothy (aged 17) use special magnifying
software to read in large print in the resource centre at Moi
Secondary School in Nairobi.
What are the causes of blindness in children?
In East Africa, children in schools for the blind in Uganda, Tanzania, Malawi, Zambia and Kenya
were examined to identify their levels of vision and the cause of visual loss. 1,062 children
enrolled in these schools were examined according to standard WHO criteria. The common
anatomical causes of blindness were found to be corneal scars (19%), diseases of the whole
eyeball (16%) and cataract (13%). The results were compared with data collected in three of the
countries in 1995, and it was found that the major causes of blindness have not changed
significantly over time, although there are now fewer children needing cataract surgery.
These studies confirmed that the development of cataract services for children in all countries had
made an impact on reducing the number of children who are avoidably blind. They are providing
evidence for ongoing efforts to strengthen paediatric eye care, including programmes to train
health workers and teachers in childhood blindness and equip hospitals with the equipment
needed, and advocacy for increased immunisation to combat corneal scarring.
The findings also provided further evidence that there are still many children in schools for the
blind who could attend mainstream schools with only a little specialist support. Sightsavers and
other stakeholders will be discussing these findings with Ministries of Education with a view to
supporting children to join mainstream schools wherever possible and, in due course, reviewing
the wider role of special schools in East Africa.
In Sri Lanka, 243 children aged 5-15 years with visual impairment and studying in 12 schools for
the blind, 30 integrated education schools and 6 multiple disability schools were examined using
the standard WHO methodology for childhood blindness. It was found that 58.5% were blind and
the remaining children had low vision. For 43% of children, visual impairment was due to
hereditary factors. The main causes of visual impairment were retinal disease (37%), whole globe
causes (31%), cataract (20%) and glaucoma (7%). With the use of low vision devices, 25% of
children had an improvement in their vision.
As a result of this study, the Ministry of Health, in collaboration with Sightsavers, agreed to
establish a specialist eye centre for children in Colombo. Sightsavers also supported the
development of a national strategy for low vision care which has resulted in the establishment of
at least 12 low vision centres in the country. This will facilitate the participation of children with
visual impairment in regular schools, after the provision of assistive devices and sensitisation of
school administration and teachers.
In Pakistan, a national survey of all schools for the blind was undertaken in 2003 using the
standard WHO guidelines for childhood blindness. 1,000 children in 46 schools were examined.
The survey found that 77.5% of children enrolled in these schools were blind and the remainder
had low vision. For 60% of children, visual impairment had a hereditary basis. The main causes
of blindness were retinal disease (51%), whole globe problems (28%) and corneal problems
(3.7%). Over 11% of children with low vision had significant improvement in their vision using
low vision devices.
Two population-based studies in Pakistan, one in a rural district and one in a semi-urban district,
were conducted to determine the prevalence of refractive errors in school-aged children. They
found a mean prevalence of 3.5%, implying that there are roughly 1.6 million school-aged
children with visually impairing refractive errors in the country. Studies into community perception
of refractive errors found key barriers to children wearing glasses were concerns about
appearance and cost. In relation to the latter, 43% of respondents said that they could not afford
more than US$3 for a pair of glasses; this is particularly significant for children because they
Peter Caton/Sightsavers
Devika (aged 10) is
visually impaired and is
supported by a special
teacher so that she can
enjoy attending her local
school with her friends.
require frequent replacement of glasses due to breakages.
The studies in Pakistan were instrumental in engaging government education planners and policy
makers with inclusive education. The data formed the basis for a national consultation on
inclusive education that resulted in the establishment of an inclusive education cell in the Ministry
of Education and the launch of a pilot programme to test inclusive systems in 16 demonstration
mainstream schools in the public sector. Eight of these schools are supported by Sightsavers. The
learning from this pilot programme has played a key role in the development of a revised policy
for education.
In India, a study was undertaken to determine the main causes of blindness and vision
impairment in children enrolled in two inclusive education programmes in Orissa and
Chhattisgarh. A random sample of 166 children from the 300 students enrolled were examined. In
Orissa, 54% of children were diagnosed with cataract and corneal diseases, and in Chhattisgarh,
the predominant cause was diseases of the retina.
Following the research, children with cataract were referred to a tertiary-level partner for
treatment, and children with conditions that required further diagnosis (such as diseases of the
retina) were referred for further assessment, and treatment where possible. The findings provide
guidance for Sightsavers ongoing work with partners to strengthen child eye health.
The findings have been shared
with eye care stakeholders in the
region with a view to
strengthening paediatric services,
and are also being used as input
for country and regional situation
analysis, which, in turn, will inform
the development or revision of
regional and national eye health
plans.
Peter Caton/Sightsavers
In the Caribbean, a comprehensive
assessment of children in
education programmes designed to
support children with visual
impairment was undertaken to
ascertain the clinical and low vision
support required. A purposive
sample of 171 children was drawn
from 3 countries (Jamaica, Trinidad
& Tobago, and Guyana), and a
detailed ophthalmic examination,
low vision assessment and
cognitive assessment were carried
out by the review team. The
assessments of children in Jamaica
indicated that the predominant
causes of visual impairment in the
sample were diseases of the retina
and glaucoma.
Adita (aged 9) has low vision and attends
Tunbridge School in Bangalore, India. The school has
special equipment to help her learn alongside her
sighted friends
Policy implications
•
A high proportion of childhood blindness is preventable or treatable. At least 25% of
children enrolled in schools for the blind or inclusive education programmes have
preventable or treatable causes of blindness or vision impairment. More action is needed to
strengthen eye health services for children and prevent childhood blindness. This should
include better monitoring of immunization coverage and vitamin A supplementation to
reduce corneal blindness, and enhanced access to specialised cataract treatment, with low
vision care for good visual rehabilitation to support children’s continued education.
•
Refractive errors and low vision are common causes of vision impairment in children,
affecting 50% or more of children in schools for the blind or inclusive education
programmes. Providing low vision devices and glasses would promote education
opportunities for a large number of children. Programmes to provide glasses need to
address barriers of cost and style.
How effective are systems for assessing children
with visual impairment and providing appropriate
low vision devices and glasses?
In Malawi, Kenya, Tanzania and Uganda, over 4,000 children enrolled in education
programmes designed to provide support to children with visual impairment were examined by
trained teams to assess their vision and determine causes of visual loss. The research found that
42% of the children needed glasses (but less than 10% had them), and 31% needed low vision
devices (but less than 5% had them).
This assessment provided much needed information on the need to expand the provision of
glasses and low vision devices for children in these four countries. Sightsavers has since
engaged with Ministries of Health in each country to discuss how best these needs can be met,
both in the short term to ensure that all children currently in school benefit as much as possible
from the education provided, and in the longer term by supporting the development of new
schools of optometry in the region, to increase the quality and number of optometrists
available to support children in school.
The study demonstrated the
need for greater linkage
between low vision services
and education. As a result of
advocacy to the federal and
provincial governments, low vision
clinics, resource centres and early
intervention centres were set up in
Nick Bell/Sightsavers
In Pakistan, of the 1,000
children examined in schools
for the blind, 135 children could
read 1M/N8 (normal print) with
the use of magnifiers.
Improvement in the number of
lines seen on the visual acuity
chart (LogMar) was also
assessed. A new prescription of
glasses resulted in
improvement of 3 or more lines
in 58 children, while with the
additional use of telescopes,
the number who had an
improvement of 3 lines or more
went up to 116. This suggests
that at least 10% or more of
children studying in the schools
for the blind would be able to
read and see the blackboard
with the use of glasses and low
vision devices.
Suleman (aged 10) was provided with glasses after
his sight was tested during a school screening in
Pakistan.
ten schools for the blind that also provide low vision devices. Furthermore, the Ministry of
Education has agreed to set up 8 resource centres for the 16 pilot inclusive education schools to
facilitate low vision assessment and training in the use of low vision devices. This has resulted
in fewer children with low vision being enrolled in schools for the blind as they are now joining
mainstream schools. In addition, four Text Accessibility and Legibility Centres were established
in five public and school libraries.
In India, the assessments of vision impairment in children enrolled in education programmes in
Chhatisgarh mentioned previously found that 76% of children could potentially benefit from
low vision devices, but only 2 children were previously using them.
This study played an important role in establishing systems for children to be properly assessed
for visual function and low vision before enrolment in the inclusive education schools, so that
they receive the most appropriate support. It has also been used to develop stronger systems
for the provision of assistive technology, to ensure that children benefit from the necessary low
vision devices.
In the Caribbean, the assessments of children with visual impairment in education programmes
in Jamaica, Trinidad and Tobago, and Guyana found that 67% of the children were either blind or
severely visually impaired, while 17% had moderate low vision. There was a significant
improvement in vision in the low vision category when low vision devices were provided.
Sightsavers’ partner, the Caribbean Council for the Blind (CCB), has used this research to continue
raising awareness among stakeholders about the importance of low vision services, and to
strengthen education programmes to better support children with low vision. The findings were
instrumental in the formulation of the new strategic plan for CCB, which identified the training of
Itinerant Teachers in low vision care and the establishment of low vision centres as vital supports
to education services. So far, at least eight low vision centres have been set up in Guyana,
Jamaica and Belize, and these are closely linked to the education programme.
Policy implications
•
Strong links between the health and education sector and effective assessment
procedures are essential to ensure that all children receive the type of educational support
that is most appropriate for them.
•
Refractive errors and low vision are common among children participating in education
programmes designed to provide support to children with visual impairment, yet very few
of those in need have low vision devices or glasses. Addressing this would result in a
marked improvement in the quality of education of these children. Systems for the
provision of assistive devices and glasses need to be strengthened, including adequate
low vision services and training of personnel in low vision care.
How effective are current systems for supporting
education for children with visual impairment?
In Sri Lanka, a situation analysis of all children with visual impairment was conducted in 2003
in collaboration with the Ministry of Education. It was found that 434 blind children were
studying in schools for the blind and 644 children with low vision were studying in mainstream
schools. Using WHO criteria, it is estimated that the prevalence of childhood blindness in Sri
Lanka is about 5 per 10,000 children (or about 7,000 children). This means that of all children
with blindness and low vision, only about 15% are in school.
Discussions are under way with the Ministry of Education on holding consultations between
various stakeholders to develop a national strategy for promoting inclusive systems in education.
Jamshyd Masud/Sightsavers
In the Caribbean, the assessments of children with visual impairment in Jamaica, Trinidad and
Tobago and Guyana found that coverage of children in need by educational programmes varied
from 21-60% in the three countries. There was a gender bias, with more male children
receiving support.
Raheela (aged 19) has low vision and was struggling to see the board in class until she
was provided with glasses.
Sightsavers partner, the Caribbean Council for the Blind, is using this research in their ongoing
advocacy for more inclusive education.
Jamshyd Masud/Sightsavers
In Kenya and Uganda, research was undertaken in 2007/08 with 85 Itinerant Teachers (ITs)
and school-level Vision Support Teachers, to better understand their role and any challenges
encountered. These teachers were providing support to 417 children and young people aged 020 years, which included 60 children who were blind and 324 children with low vision. Data
were collected over one year using a journal in which the ITs recorded details of their caseload,
their daily timetable of activities, what they did during the visit to each child, agreed action
points, and any difficulties they encountered. The study found that the ITs were not able to visit
Sadif (aged 13) lives in Pakistan and can now enjoy school thanks to her new glasses.
children as frequently as planned, often due to the pressure of other classroom duties. In
addition, most ITs spent considerable time trying to identify new children with visual
impairment for the programme or increasing community awareness, rather than supporting
individual children on their caseload. Levels of Grade 2 (uncontracted) Braille experience varied
greatly, with only 50% of ITs with the relevant experience in Kenya and almost none in Uganda.
This meant that Braille books produced in Uganda in Grade 2 were effectively inaccessible to
both ITs and children.
These two detailed studies confirmed the value of Itinerant Teachers in supporting children with
visual impairment, but also highlighted several areas where this support could be improved.
Discussions have now started with Ministries to consider how this can be done, including
consideration of strategies to make more use of existing special schools for intensive Braille
tuition, and better support systems for Itinerant Teachers. The Braille skills of Itinerant Teachers
are also under review with a view to enhancing their skills.
Policy implications
•
Many children who are blind or have low vision are not currently in school. More action is
needed to identify children who are blind or have low vision and to develop and
implement policies for inclusive education systems.
•
Itinerant Teachers are a valuable resource in the education of children with visual
impairment, but they are currently unable to spend adequate time on providing itinerant
support and have insufficient knowledge and experience of teaching Braille to support
blind children in mainstream schools. Action is needed to redress heavy workloads and to
provide more orientation and capacity development.
•
Gender imbalances must be addressed so that more girls with visual impairment are
identified and supported to participate in education.
Research and Development to support
education services
Sightsavers also supports research to develop new tools and technologies that can support
education for children who are blind or have low vision. For example:
In Pakistan, a research and development project is underway to develop a functional vision
assessment kit and standardised procedures to assess a child's use of vision and visual
efficiency in daily activities. The assessment determines how the child accesses his/her visual
environment. A teacher trained in the use of the kit can perform a complete cognitive and
functional vision assessment. Based on this, the teacher can then make an appropriate
selection of learning medium, environment modifications and visual skills training to develop
an individual education plan for the child.
Sightsavers provides ongoing support to the development of affordable high-quality low vision
and assistive devices for use by children in their education settings, including a range of
magnifiers to suit different needs and electronic devices such as closed circuit television and the
Dolphin Pen, a portable screen reader and magnifier.
Sightsavers’ support to research and development in the area of low vision care has resulted in
the production of vision assessment material and tests, together with a wide range of
affordable low vision devices and assistive technology that have helped to enhance coverage of
services to the poor. This has also had immense global implications, with low vision resource
centres established in Hong
Kong and South Africa for
distribution of assistive
technology, low vision
devices and assessment
material to support low
vision and education
programmes in the public
sector in many developing
countries.
Rachel Heald/Sightsavers
Our support to the Dolphin
Pen is supporting computer
use for children and adults
who are blind in several
countries in Africa and
beyond, thereby enabling
better education and
employment opportunities.
Several other
manufacturers are now
exploring similar products.
Sandra (aged 13) has low vision and lives in Kamuli District
in Uganda. She uses a special tactile globe to learn about
countries around the world.
For more information on Sightsavers’ research, please contact:
East, Central and Southern Africa: Ronnie Graham [email protected]
India: Elizabeth Kurian [email protected]
Pakistan: Niaz Khan [email protected]
Sri Lanka: Sunil Fernando [email protected]
Caribbean: Phil Hand [email protected]
Other countries and global research: Simon Harris [email protected]
Low vision, refractive errors and research & development: Hasan Minto [email protected]
Researchers, partners and acknowledgements
Surveys of children in schools for the blind
and resource centres in Kenya, Malawi,
Tanzania and Uganda
C. Tumwesigye, Department Of
Ophthalmology, Mulago Hospital, Kampala,
Uganda
G. Msukwa, Lions Sightfirst Eye Hospital,
Blantyre, Malawi
M. Njuguna, Eye Department, University Of
Nairobi, Kenya
B. Shilio, Department Of Ophthalmology,
Kilimanjaro Christian Medical Centre
P. Courtright & S. Lewallen, Kilimanjaro Centre
for Community Ophthalmology, Good
Samaritan Foundation, Moshi, Tanzania
Ministries of Health in Kenya, Tanzania,
Uganda and Malawi
Ronnie Graham, Sightsavers International
Funding from Optometry Giving Sight (OGS)
Ronnie Graham, Sightsavers International
With support from:
Kenya
Ministry of Health
Ministry of Education
Kenya Institute of Special Education
Kenyatta University (Department of Special
Education)
Sightsavers Kenya Country Office
Malawi
Ministry of Education, Science and Technology
Montfort Special Needs Education College
Malawi Institute of Education
Sightsavers Malawi Country Office
Uganda
Surveys of children in schools for the blind Ministry of Education
Kyambogo University (Faculty of Special
in Zambia
Education and Rehabilitation)
G. Chipalo-Mutati, University Teaching Hospital,
Ministry of Health (Iringa District)
Lusaka, Zambia
Sightsavers International Uganda Country
International Centre for Eye Health, London
Office
School of Hygiene and Tropical Medicine
Caribbean
Ronnie Graham, Sightsavers International
Dr. P Vanes, Georgetown Public Hospital,
Assessments of children with visual
Guyana
impairment in India, East Africa and the
Caribbean Council for the Blind
Caribbean
Hasan Minto, Sightsavers International
International Centre for Eyecare Education
(ICEE)
India
Dr. Sunita Lulla, Venu Eye Institute
Sightsavers International India Office
The role of the Itinerant Teacher in Kenya
and Uganda
Pakistan Population Based Studies on
Refractive Errors
Paul Lynch, Visual Impairment Centre for
Teaching and Research, University of
Birmingham
Ronnie Graham, Sightsavers International
Dr. Ghani Sheikh, Community Ophthalmologist,
Al-Ibrahim Eye Hospital
Dr. Zahid Jadoon, Epidemiologist, Pakistan
Institute of Community Ophthalmology
With support from:
Pakistan National Situation Analysis of
Refractive Services
Kenya
Ministry of Education
Kenya Institute of Special Education
Kenyatta University (Department of Special
Education)
Sightsavers Kenya Country Office
Uganda
Ministry of Education
Kyambogo University (Faculty of Special
Education and Rehabilitation)
Sightsavers International Uganda Country
Office
Pakistan Blind school study and National
Census Data Analysis
Dr. Haroon Awan, Sightsavers International
Dr. Hasan Minto, Sightsavers International
Dr. Mubashir Jalis, Paediatric Ophthalmologist
Dr. Clare Gilbert, International Centre for Eye
Health
Mr. Tayyab Shah, GIS Specialist
Dr. Aliya Qadir Khan, Community
Ophthalmologist
With support from:
Ministry of Social Welfare and Special
Education
Directorate General of Special Education
Provincial Departments of Social Welfare and
Special Education
Ministry of Health
Provincial Health Departments
National Eye Health Committee
National Paediatric Ophthalmology Task Force
Mr. Hasan Minto, Sightsavers International
Dr. Haroon Awan, Sightsavers International
Ms. Sumrana Yasmin, Sightsavers International
Mr. Niazullah Khan, Sightsavers International
Mr. Syed Farrukh Aftab, Researcher, Pakistan
NGO Federation
Dr. Zahid Jadoon, Epidemiologist, Pakistan
Institute of Community Ophthalmology
Dr. Aliya Qadir Khan, Community
Ophthalmologist
Prof. Asad Aslam Khan, National Coordinator,
Prevention of Blindness Programme
With support from:
Ministry of Health
Provincial Health Departments
National Eye Health Committee
Pakistan Optical Association
Pakistan Community Perceptions Study
Mr. Syed Farrukh Aftab, Researcher, Pakistan
NGO Federation
Mr. Hasan Minto, Sightsavers International
Ms. Sumrana Yasmin, Sightsavers International
Sri Lanka Situation Analysis
Ms. Lucy Roberts, Consultant
Sri Lanka Blind Schools Study
Dr. Habiba Rawoof, Ophthalmologist
With support from:
Ministry of Health
Ministry of Education
For more information or to contact any of our offices worldwide see www.sightsavers.org
Registered UK Charity Numbers 207544 and SCO38110
Ireland Charity Number CHY15437
US Employer Identification Number 31-1740776
Printed on 100% recycled paper
`