Visual Impairment Scotland Research
Development of an Inclusive Childhood Visual Impairment Notification System
Blaikie AJ, Ravenscroft J, Buultjens M, Dutton GN, Visual Impairment Scotland Research Group
Royal College of Ophthalmologists Congress
Birmingham, May 2003
The primary purpose of Visual Impairment Scotland (VIS) is to develop an inclusive nation-wide childhood visual impairment (VI) notification system that fulfils the aims of facilitating service planning and visual impairment research as well as offering accessible and relevant services to children and their parents.
A Scotland-wide series of cross-discipline professional meetings was organised to discuss the aims of VIS and distribute ‘VIS Introduction Packs’ and consent forms. Professionals were requested to forward packs and consent forms to parents of children with VI under their care. When VIS received parental and child consent, data collection forms were issued to the children’s medical professionals and educational institutions.
An information support service and website(1,2,3) was also developed to both fulfill unmet need(4,5) and encourage notification of children to VIS.
Number of Children Notified
436 children were notified to VIS between March 21 2001 and September 21 2002. Of these children, 94% (409/436) were under 16 years of age on September 21 2002. Of the children under 16 years of age information on visual function was available on 95% (389/409).
VIS employs a modified version of the NORDSYN visual function classification system6. 333 children were found in Group A or higher and considered to be ‘significantly visually impaired’ (Table 1). Very few children (16 in Group D) who are visually impaired are actually ‘no perception of light’ (NPL) and ‘totally blind’.
Registration Rates & Record of Needs Status
Complete educational information was available on 224 children with ‘significant visual impairment’ (Figure1). Almost two thirds (63%) of these children were registered blind or partially sighted, almost a half (46%) subject to a Record of Needs and just over a third (38%) subject to both. A large proportion (29%) of children with visual impairment were neither registered blind or partially sighted or subject to a Record of Needs.
Many children with visual impairment (57.1%) had another disability in addition to visual impairment. This is similar to Swedish figures7 where 59.1% of children with visual impairment had additional disabilities. This is very different from the official blind and partial sight register in Scotland where only 20% of children are reported to have any additional disabilities(8).
Prenatal acquired disorders are the most common cause (67%) of childhood visual impairment. The most common time prenatally to acquire childhood visual impairment is at conception (41.4%).
The second most common time to acquire visual impairment in childhood is at and around the time of birth (15.9%). Prematurity and oxygen deprivation are the two main causes of acquired visual impairment at this time.
This study like previous ones(9) found that it is uncommon (7.5%) to acquire a visually impairing condition after the first 28 days of life during later childhood.
Consistent with the comprehensive notification systems developed in many Scandinavian countries (7,9,10,11), VIS has confirmed that the brain (47%) is the most common cause of visual impairment in children in a developed country. This is the first time this has been confirmed in Scotland.
By linking a user-driven information support service to a broad base of notifying professionals an effective and inclusive system of childhood notification has been developed. This new information highlights the complex needs of children with visual impairment and can be used to inform appropriate planning of service provision.
The notification system is already facilitating research and helping to improve understanding of childhood visual impairment in Scotland (12,13,14,15,16.)
1. A J Blaikie, Ravenscroft J, Buultjens M, Dutton GN, VI Scotland Study Group,
Development of a web-based childhood visual impairment (VI) information and support
service, Royal College of Ophthalmologists (RCO) Congress, Birmingham, May 2003
2. A J Blaikie, J Ravenscroft, GN Dutton, Development of childhood visual impairment medical information documents, The 7th International Conference on Low Vision Activity and Participation, July 2002, Göteborg, Sweden
3.Ravenscroft J, Blaikie AJ, What visually impaired children want from a website, 11th International Council for Education of People with Visual Impairment World Conference July 2002, Amsterdam
4. ‘What families need now’: A report of the needs of families with visually impaired children in Scotland Royal National Institute for the Blind (RNIB) (1996) ISBN 1 85878 111 6
5. Walker E, Tobin M, Mc Kennel A. Blind and partially sighted children in Britain: the RNIB survey Vol 2 London: HMSO, 1992
6. http://www.visaid.dk/english/eng_class.asp (website defunct see 7)
7. Blohme J, Tornqvist K, Visual impairment in Swedish children. I. Register and prevalence data Acta Ophthalmol Scand. 1997 Apr;75(2):194-8
8. Social Work Statistics Release, Registered Blind and Partially Sighted Persons, Scotland November 2002
9. Blohme J, Tornqvist K, Visual impairment in Swedish children. II. Etiological factors. Acta Ophthalmol Scand 1997 Apr;75(2):199-205.
10. Riise R, Flage T, Hansen E, Rosenberg T, Rudanko S-L, Viggosson G, Warburg M. Visual impairment in Nordic children. I. Nordic registers and prevalence data. Acta Ophthalmol 1992 70 145-154.
11. Rosenberg T. Visual impairment in Danish children 1985. Acta Ophthalmol 1987 65 110-117.
12. A J Blaikie, Ravenscroft J, Buultjens M, Dutton GN, VI Scotland Study Group, Description of the characteristics of children with dual sensory impairment, RCO Congress, Birmingham, May 2003
13. A J Blaikie, Ravenscroft J, Buultjens M, Dutton GN, VI Scotland Study Group, Low vision aid (LVA) use in a population of children with visual impairment (VI), RCO Congress, Birmingham, May 2003
14. A J Blaikie, Ravenscroft J, Buultjens M, Dutton GN, VI Scotland Study Group, Description of blind and partial sight registration rates amongst a population of children with significant visual impairment (VI), RCO Congress, Birmingham, May 2003
15. A J Blaikie, Ravenscroft J, Buultjens M, Dutton GN, VI Scotland Study Group, Description of the characteristics of visually impaired children with a legal statement of special educational needs, RCO Congress, Birmingham, May 2003
16. A J Blaikie, Ravenscroft J, Buultjens M, Dutton GN, VI Scotland Study Group, Childhood visual impairment: The time course from birth to blind registration, RCO Congress, Birmingham, May 2003
VI Scotland, SSC