Visual Impairment Scotland Report
Chapter 3 Information and Support Service: Development and Results
- Parents' section of the website
- Medical information documents
- Children's section of the website: VISKIDS
- Chat room
A well-used support and information service was developed: Between 21 march 2001 and 31 April 2003 there were 120,178 website visits.
76 separate medical information documents were written with 22,136 documents downloaded in the same period.
518 families receive a regular newsletter, 499 children have joined the VISKIDS club and 105 children have received passwords to use the Internet chat room.
The chat room won the 2002 Computing Industry ‘Special ABILITY Award’. This award recognises those who have done most to alleviate disability in the community by enabling disabled people to overcome their disability.
The development of the information and support service is to fulfil unmet need and to encourage and motivate parents and children to become involved in the VIS project. Elements of the information and support service to be developed included:
- A club for children with visual impairment called VISKIDS
- A safe and secure internet chat room for VISKIDS members
- Understandable medical information documents
- A telephone and Email information line for children and parents
- A web-based parents’ discussion forum
- A website found at http://www.viscotland.org.uk
Service Use Results
Between 21 March 2001 and 31 April 2003 there were 120,178 website visits. Visits to the website continue to increase.
The medical information documents are the most visited information pages with 22,136 documents downloaded over the same time period. 76 separate medical information documents have been developed specifically written in plain language with low reading ages and high readability scores. This ensures that they are easy to read and understand by both parents and many children.
518 families receive a regular newsletter and 499 children have joined the VISKIDS club. 69 questions have been posted on the parents’ forum and 111 children have passwords for the Internet chat room. Through collaboration with international visual impairment organisations children from Australia, New Zealand and Canada have been given access to the chat room.
Two ‘Get Together Days’ were organised with the aim of:
- Allowing parents to discuss common concerns
- Giving children the opportunity to meet and play
Over 100 parents and children attended the days which were organised in collaboration with voluntary organisations and social services in Lothian and Ayrshire. More Get Together Days are planned.
Ensuring Broad Access to the Information and Support Service
When VIS was setting up this service we were concerned that many parents did not have access to the Internet and therefore would not be able to access the information provided. To overcome this the information on the website is also available in various print sizes, Braille and in audiotape format in all commonwealth languages. There is a quarterly newsletter which brings together all the best bits of the website and is sent to every family notified with VIS. As with all the other information provided the newsletter is also in a range of accessible formats. A successful nation-wide information and support service has been delivered that fulfills unmet need but also drives notification to the childhood VI notification system.
Developing upon knowledge and experience gained from the initial two years of the project VIS collaborated with social services and health professionals to produce an information booklet. The booklet addresses common areas of interest that parents and professionals have highlighted to VIS and is called ‘Where can we go from here?: Scotland’. Over 1,700 booklets have been produced and distributed to parents, professionals and voluntary organisations throughout Scotland.
One of VIS’s main aims is to provide an information and support service for parents and children with visual impairment. It was considered that an effective way to deliver information is to set up a website specifically for parents. The World Wide Web offers many websites for visually impaired people. Most of these sites offer information and support for the older population or specific rare conditions. Many others are aimed at professionals who provide services or are involved in research. There were very few websites written solely for parents of children with visual impairment.
Our approach to the VIS website was to ensure that all the information we put onto it was written, designed and checked by ourselves and presented in such a way that it was easy to follow. There should be text only and full graphical versions and we wanted to include as much audio material as possible. The website was built and served by VIS staff, and with the cooperation of the University of Edinburgh, we are able to use http://www.viscotland.org.uk as the site address.
What information should be put on the adult section of the website?
In order to build a new and successful website it is important to know what potential users of the website would want to find on it. Several meetings were held with parents to discuss the information they would like to see on a new website. The parents volunteered a range of topics and suggested the format for the website. After these meetings (over 10 were conducted) the design and basic layout of the website was produced. This layout was also discussed with parents at various further meetings until a final format was produced. The topics that appear on the website were all suggested by parents. The information provided comes from a range of sources but is all checked before being placed onto the website. The main information page for parents is seen in figure 3.2.
Figure 3.2 The VIS Website’s main information page for adults.
When a child is diagnosed with visual impairment only a minority of parents in the United Kingdom are ever offered written information to back up verbal information from the hospital consultation 30. Such information is often difficult to understand due to the use of too much jargon and an inappropriately high reading age40,41.
In order to meet the needs of parents, carers and children the VIS team aimed to develop relevant and understandable medical information documents that covered the major causes of childhood visual impairment. A medical information document was developed for every condition notified to VIS. Information for each document was based on a review of the literature, relevant textbooks and searching the World Wide Web for currently existing documents. The documents were written by Dr Blaikie and Professor Dutton using a staged process involving a multi-disciplinary group including professionals and parents.
After development of an initial batch of documents objective ’SMOG’ reading age42 and ’Flesch’ reading ease score43 studies were performed44. These studies helped to develop the content and writing style of the VIS information documents.
Number of information documents developed
Over 400 children with visual impairment have been notified to the VIS project resulting in the development of 76 separate medical information documents to date. These documents cover the majority of causes of childhood visual impairment in a developed country. They are available as downloadable word documents on the VIS website and web pages on the Scottish Sensory Centre website. The documents have become popular with parents, teachers, social workers and health professionals. During the six months between April and September 2002 over 8,000 documents were downloaded.
For the first time in the UK information documents are available that address the most common causes of childhood visual impairment including cerebral palsy, prematurity and periventricular leucomalacia.
Reading ease score
The average Flesch reading ease score of the VIS documents was 68% (range 52% to 80%). This was better than the average score of 40% (range 21% to 59%) from the matched medical documents identified from other websites. A score of greater than 60% is said to represent plain English. None of the matched documents achieved this while 9 out of 10 of the VIS documents scored over 60%. The document scoring less than 60% has since been modified accordingly. The results are shown in Figure 3.3.
The average reading age of the VIS documents was 14.2 years (range 14 to 16). This was better than the average reading age of 18.5 (range 17 to 21) for the matched group.
As a result of this approach a comprehensive, relevant and understandable resource of medical information documents has been developed driven by the needs of parents and the epidemiology of childhood visual impairment.
An important result of the focus groups was that parents felt children would also benefit greatly from a website and children’s club: A club for members’ children still at school, visually impaired and living in Scotland. The idea for the club stemmed from the need to break down the feelings of isolation and loneliness that many children with visual impairment feel. It was decided to set up VISKIDS (Visual Impairment Scotland, Knowledge, Information, Development, Service), a virtual club based on the Internet and hosted on the VIS website but completely independent of the parents’ section. Funding was obtained from Lloyds TSB to support this development. The main logo for the club is a mouse called VIK and was designed in house. This logo was presented to 10 visually impaired children who liked it very much as they thought he was ’cool!’
Figure 3.5 'VIK' the mouse holding the VISKIDS logo.
The power of information technology to bring people together is one of its most valuable contributions to modern life. The Internet has the ability to dissolve distance and physical limitations, acting as a conduit for new experiences, new ideas and new friendships.
Visually impaired children can access the VISKIDS website from school, local library or home. The website contains a wide range of information resources and fun for children with visual impairment. There are stories and jokes sent in by other visually impaired children, film reviews, information about leisure activities, holidays, competitions, advice on handy tips around the house, out at play and in school as well as profiles of adults who were visually impaired as children.
When children join VISKIDS they receive a ’Welcome to VISKIDS’ certificate as well as getting introductory club items such as a logo bug, balloons, and other toys. Each certificate has the child’s unique VISKIDS number and has been very popular with the children. One parent said: "When my daughter received her certificate she was so pleased that she ran into school showing it to all of her friends". Another parent told us: "My son has had his certificate framed and it is now above his bed". Parents have valued the importance of their child being a member of such a club. This has been one of the motivating factors that has driven new notifications.
Figure 3.6 The home page of VISKIDS
In the LOOK report30 on the needs of families with visually impaired children, parents indicated that their children lacked opportunities to meet other children to develop friendships and social skills. The VISKIDS club and chat room assists visually impaired children to develop socially and emotionally. In doing so it is hoped they can be helped to fulfill their potential and enter the wider community as mature valued members of society, overcoming barriers that have previously restricted their transition from adolescence to adulthood.
The International Chat Room Project
The chat room is the UK’s, Europe’s and possibly the World’s only safe and secure one for children with visual impairment. To use the chat room children have to be registered with a credible organisation such as:
- Visual Impairment Scotland’s VISKIDS club
- RNIB in the UK
- Royal Society for the Blind in Australia
- A local authority special education department
By having this constraint we are in a position to check the validity of the children applying to use the chat room. After checks are made the children are issued with a three-tier password system. They are given a unique username, password and nickname. The nickname means that children cannot be identified once in the chat room (this is a standard security measure when using a chat room). No other chat room for visually impaired children has this level of security and functionality.
To date 111 children have been given passwords to use the chat room. By issuing passwords to visually impaired children from Australia the chat room has been helpful in breaking down international and cultural barriers. Scottish children now regularly chat to Australian children with visual impairment. New friendships are developing and improved confidence in using information technology and communication skills are improving. Children are enjoying the chat sessions so much that in the Royal Blind School in Edinburgh the children are coming to school early to get onto the computers to chat their Australian friends.
The chat room won the 2002 Computing Industry ’Special ABILITY’ award. This award recognises those who have done most to alleviate disability in the community by enabling disabled people to overcome their disability and attain their full potential. The judges paid particular attention to innovation and to evidence of substantial impact in changing, for the better, prospects of disabled people.
Figure 3.7 Dr Andrew Blaikie receiving on behalf of VIS the 2002 Computer Industry ’Special ABILITY’ award from Dr Geoff Busby, President of the disability Group of the British Computer Society