Muscular Dystrophy Campaign – improving services for children

Research to guide the development of a website aimed at children aged 4-19

The Muscular Dystrophy Campaign recognised an opportunity to improve theway it supports children with muscle disease by developing a specific website that caters for their needs. The new website had to complement the main website (www.muscular-dystrophy.org). The idea behind My Online World (www.myonlineworld.org.uk) is to provide a safe place for peer-to-peer support as well as an interactive and entertaining experience, for instance, enabling site users to create their own characters, to let the world know what they are thinking by tagging a ‘thought tree’ and to play games.

This site will help the Muscular Dystrophy Campaign extend its reach and the support it offers to more young people with muscle disease in the UK. Research was needed to identify and understand children’s needs for a website, and provide guidance to support the development of the website. This was achieved from a two-stage process of qualitative in-depth and paired depth interviews among children with muscle diseasebetween the ages of 4 and 19. This research was experiential, conducted alongside respondents in front of the Internet, using it as a prompt for discussion and for carrying out guided tasks.

The first stage focussed on gathering information to understand overall Internet usage, attitudes and needs and gauged initial reactions to the concept, including scope of content and branding. Following feedback of the findings to the website design agency (Tic Toc), the second stageemployed the same methodology to test developed creative ideas for the website, among some of the respondents from the first stage and newrespondents.

This methodology put the end users - the children - at the centre of the process and allowed us to build a complete picture of their needs, not only around website usage but also tone of voice, content, labelling and language.  

We were able to give insight into the ways in which the respondents’ needs and interests were reflective of young people, with or without muscle disease, but that also considered their particular situation. This included their physical ability to use a computer, and the issue of managing information about their condition without causing distress to either them or their carers, while at the same time empowering young people to access the kind of support most helpful to them.