Visual Impairment Scotland Research
Why are so few children with Visual Impairment registered blind or partially sighted?
A J Blaikie, L Middleton, J Ravenscroft, L Cresswell, M Buultjens, GN Dutton
The 7th International Conference on Low Vision Activity
July 2002, Göteborg, Sweden
Purpose and Background
There is great a disparity between the estimated number of children with visual impairment in Scotland (over 2000)(1) and the actual number on the official blind and partial sight register (only 828)(2). Of the children on the official register only 26% have additional disabilities compared to an expected 60%(3). It seems therefore that the register is not just failing to identify the majority of children it is in particular failing to identify children with additional disabilities. In developed countries 80-90% of childhood visual impairment is evident within the first year of life3. In Scotland however 62% of new blind and partial sight registrations occur after the age of 5 years(2). It is clear that even when the register does identify children it identifies them late.
By exploring the reasons for low, inequitable and late registration we hope to make recommendations that will make the register better at identifying all those in need and as a result more effective as a service planning and visual impairment research tool.
All ophthalmologists (32) and community paediatricians (16) with children with visual impairment on their caseloads were sent a structured history document to complete and return. The history document addressed recognised areas of concern that have been previously highlighted in two recent Scottish Executive reports 4,5.
The return rate was 81% (26/32) from ophthalmologists and 94% (15/16) from community paediatricians. Every health board in Scotland was represented by at least one ophthalmologist and one community paediatrician. Two of the returned ophthalmologist’s questionnaires were blank because they did not have a paediatric caseload.
‘Types’ of children less likely to be certified
Ophthalmologists are less likely to certify eligible children:
- With cerebral visual impairment (24/24)
- With associated disabilities (20/24)
- Undergoing active treatment (16/24)
- Under 2 years of age (15/24)
Definitions of ‘Blind’ and ‘Partial Sight’
The vast majority of respondents feel the current definition of blind to be inappropriate for children (34/39). All community paediatricians (15/15) consider the terms ‘blind’ and ‘partially sighted’ to be stigmatising.
Most ophthalmologists (18/24) feel the criteria do not allow inclusion of all children who would benefit from registration. As a consequence the same number (18/24) disregard the criteria when registering children.
Nearly all community paediatricians (14/15) feel that only measuring visual acuity and field loss does not identify all children who would benefit from developmental and educational intervention.
Practical difficulties with certification
The majority of ophthalmologists felt there is ‘rarely’ enough time in the clinical setting to adequately discuss certification (15/24). As a consequence nearly all ophthalmologists (21/24) consider there to be eligible children not certified simply because it has been forgotten to be done. Despite this only a minority of ophthalmologists (7/24) delegate any duties in the certification process to nurses or orthoptists.
The factors identified in this study suggest that younger children with ‘complex’ cerebral visual impairment (CVI) are less likely to be certified and registered than older children with a ‘simple’ ocular aetiology. Children who are undergoing active treatment are also less likely to be registered. The definitions of blind and partial sight are stigmatising, unusable and inappropriate for children. In addition the criteria are not broad enough to allow inclusion of all children who would benefit from registration. There are also practical difficulties within the hospital setting of identifying, discussing and certifying children.
All these factors have lead to an incomplete and skewed register that does not identify all those that are in need and consequently cannot act as an effective tool to either plan service provision or perform visual impairment research.
A broader form of assessment criteria should be developed that emphasises the challenges of assessing young children with CVI and their particular visual difficulties 6,7. The criteria should also include measures of quality of life, and in particular a child’s ability to communicate, access information and mobility.The current use of the terms ‘blind’ and ‘partial sight’ should be replaced with a graded continuum of ‘visual impairment’.
Guidelines and written documents should be developed that involve paediatricians, nursing staff and orthoptists in promoting the certification system and identifying eligible children as they attend hospital clinics. These guidelines should be extended into community institutions such as child development centres and special schools to improve identification of children with CVI.
References1. Walker E, Tobin M, Mc Kennel A. Blind and partially sighted children in Britain: the RNIB survey Vol 2 London: HMSO, 1992
2. Social Work Statistics Release, Registered Blind and Partially Sighted Persons, Scotland 2001
3. Blohme J, Tornqvist K. Visual impairment in Swedish children. II. Etiological factors. Acta Ophthalmol Scand 1997 Apr;75(2):199-205
4. Certification and Registration Working Group, Social Work Services for People with a Sensory Impairment The Scottish Office: May 2001
5. Social Work Inspectorate ‘Sensing Progress’, Social Work Services for People with a Sensory Impairment, The Scottish Office: September 1999
6. Dutton GN, Jacobson LK. Cerebral visual impairment in children. Seminars in Neonatology. 2001 Dec; 6(6):477-85
7. Houliston MJ, Taguri AH, Dutton GN, Hajivassiliou C, Young DG. Evidence of cognitive visual problems in children with hydrocephalus: a structured clinical history-taking strategy. Developmental Medicine & Child Neurology 1999, 41: 298-306
VI Scotland, SSC