Young people must be given support in the transition to adult services. A scheme enables those with physical disabilities to access a wide range of information
Carrie James, BSc, IHM, RCN, ;Kathie Drinan, MCSP SRP Grad Dip Phys;Julie Hykin, MCSP, SRP, Grad Dip Phys, are all case managers for the Walsall Health Transition Team
James C, Drinan K, Hykin J (2010) An accessible website to boost independence in young people with physical impairments.Nursing Times; 106: 47, early online publication.
The Queens Nursing Institute Fund for Innovation awarded the health transition team in Walsall £7,500 to fund their transition website project. The initial aim was to support young people with physical impairments to independently access a wide range of information. This article offers information and inspiration to those who wish to make improvements to practice and create more innovative ways of working.
Keywords Transition services, Disability, Adolescents, Website
- This article has been double-blind peer reviewed
According to the Disability Rights Commission (2004) 81% of websites fail to satisfy the most basic web accessibility initiatives which made it difficult or in some cases impossible for disabled people to access information. These individuals often need to gain the knowledge and skills they need to manage their conditions; this can be achieved by providing information in a variety of formats to promote access, choice and empowerment.
In January 2009, the Walsall Health Transition Team was formed to support young people aged between 14 and 25 years with physical disabilities through their transition into adulthood. The majority of them are in mainstream education and have neuromotor or neuromuscular conditions, which result in impaired motor control.
The team consists of three case managers: two of us were previously paediatric physiotherapists and one was a paediatric nurse. Our role is to improve the pathway to adult services, enabling young people to have timely access to appropriate support recommended by the National Transition Support Programme (www.transitionsupportprogramme.org.uk).
Our role as case managers involves working closely with young people and building a unique relationship, which ensures coordination and planning between child and adult services (Department of Health and Department for Children Schools and Families, 2008). We also provide support and signposting for access to further education, employment, independent living and social and leisure activities.
The National Service Framework for Children, Young People and Maternity Services (Department of Health, 2004) established clear standards for young people to be supported to make the transition into adulthood, thus achieving their maximum potential in terms of education, health, development and wellbeing.
Young people are encouraged to take responsibility for their own health and make informed choices. Like every young person, our service users expect to get instant access to information and to have their questions on key issues answered almost immediately. It was clear that the team needed to be more creative in how we provided information.
Many of the questions raised by the young people were unique and we often scoured the internet in search of information or answers, which was time consuming. We realised the young people would find it physically challenging to access this information themselves - for example, a search resulted in a list of small text links, which someone with fine motor control difficulties would not be able to use. In addition, when young people searched independently they could be directed to inappropriate sites.
A consortium of government departments (Prime Minister’s Strategy Unit et al, 2005) identified several steps that should be taken urgently, notably the provision of easier access to advice and information so that all disabled people and their families can understand their entitlements and rights.
With this in mind, the team concluded that building an accessible website specifically dedicated to the key issues raised by our clients would be the solution. This was supported and reinforced by the White Paper Equality and Excellence: Liberating the NHS, which recently outlined the need to develop new ways for patients to communicate with their clinicians online (DH, 2010).
Extensive research by the team failed to identify an accessible signposting site, and it was expensive to write one from scratch. The managers at NHS Walsall Community Health supported the idea, were willing to let us develop the project in work time, but did not have the financial capacity to fund any technical work.
We became aware of the Queen’s Nursing Institute Fund for, which provides small grants for innovative projects. After submitting an application, then having an interview in July 2009 we were one of 10 projects awarded a grant. We were given 12 months to complete the project.
The aim was to enable young people in Walsall with complex physical impairment to become independent in accessing web based information. As the site has been created in partnership with both young people and professionals it is called Transition Together.
The website themes were modelled on the team’s holistic assessment to cover general health, specific health conditions, money and benefits, education and work. Other themes include independent living, leisure activities, sexual health, psychological health, aids and adaptations, communication, mobility and transport. The majority of the information is national, although the team has also added links to local health and social services to enable young people to find information.
We decided to link to specific pages on local and national websites. This addressed the issue of not having the financial capability to create the information pages from scratch, and made sure the young people could instantly access the appropriate information without long involved searches and repeated clicks. The disadvantage was that we had no control over changes outside agencies made to their website page or addresses. However, by having ongoing protected administration time to check all the links on a weekly basis we ensure the site remains active and current, in line with DH criteria(DH, 2007).
On the recommendation of the QNI we chose Agent8 Design Limited to build the site. We held two events in partnership with the web developer and invited service users from the Health Transition Team and Walsall’s Centre for Independent Living to try out the site. The test pilot site was created as a result of the first event and the second enabled the site to be adapted to meet a range of needs including those of people with dyslexia, visual and physical impairments.
Both events were successful and the feedback helped develop the site further and enhance its functionality. Key points for developing a site for this client group are summarised in Box 1. Data on the use of the website is outlined in Table 1 and Box 2.
Box 1. Developing a website for people with physical disabilities
- Ensure links are via large colourful buttons rather than small written links. These are easier to see for those with a visual impairment and easier to navigate for individuals with fine motor problems.
- Make sure all information is three clicks or less away from the home page.
- Ensure information provided is appropriate, relevant and current.
- Ensure the site is linked to local and national information pages.
- Make sure the site can be adapted easily by the team providing the service.
- Ensure the model can be marketed with small adaptations so other trusts can include their own local contact links while maintaining the national content.
In September 2010 the number of users returning was 18.6% compared with an increased percentage of 43% in October. We feel this shows that those using the site are finding it useful and are returning to access more information. That more people accessed the site during September may reflect the fact that it was launched and heavily promoted during this period.
Box 2. Use of the site: feedback
- Thirty-three users have completed the website’s online survey from SurveyMonkey.
- 100% of respondents said they found the information they were looking for.
- 100% of respondents said they found the site useful.
- 100% of respondents said they would use the site again.
Comments to be made about the site included:
“Thank you for a website that gives positive role models for children with disabilities. For providing useful information on subjects relevant to myself as a parent and also my child”.
“Thank you it will be very helpful in the future to help me find the stuff like benefits I need”.
The team found the most challenging part of the project was making sure they communicated and negotiated effectively with all the agencies involved. We had to meet key people in the trust to negotiate how and why the site needed to be standalone and created in a different, more accessible format to the trust’s own site.
The team were also challenged by not having control over the external sites, and sometimes these ceased to work. It was important to have control of the content management system and be able to change links as required.
This innovative project has created a unique online signposting portal to a variety of information sources in an accessible format. The website was built successfully through user involvement and regular consultations with young people - its quality is as a direct result of their participation in this project.
The idea behind the site was to empower and enable young people. It was essential to involve them in the development of the website from the beginning. The two consultation days ensured their engagement and we also updated them face to face and through networking events and newsletters. Young people were invited along to a photo shoot to enable them to have their picture displayed on the site if they wished. Each experience was positive and inspiring, re-affirming that the website project would help to support many people and give them access to the appropriate information that they needed.
- For further information visit www.healthtransition-walsall.nhs.uk
- The team would like to thank NHS Walsall Community Health Managers, Roy Cadman at The Centre for Independent living in Walsall, and the staff at the QNI for their support during this project.
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Department of Health (2010) Equity and Excellence: Liberating the NHS. London: DH.
Department of Health (2007) You’re Welcome Quality Criteria: making health services young people friendly. London: DH.
Department of Health (2006) Transition: getting it right for young people: Improving the transition of young people with long term conditions from children’s to adult health services. London: DH.
Department of Health, Department for Children Schools and Families (2007) Aiming High for Disabled Children, Core Offer Standards and Children’s Plan.
Department of Health, Department for Education and Skills (2004) National Service Framework for Children, Young People and Maternity Services.
Disability Rights Commission (2004) The Web: Access and Inclusion for Disabled People. A formal investigation conducted by the Disability Rights Commission. London: TSO
Prime Minister’s Strategy Unit (2005) Improving Life Chances for Disabled People. London: Cabinet Office