The Golden Freeway: a preliminary evaluation of a pilot study advancing information technology as a social intervention for boys with Duchenne muscular dystrophy and their families

Abstract

Established information technology was used in an attempt to reduce social isolation by providing each family who had a child with Duchenne muscular dystrophy with a personal computer, and e-mail and Internet connectivity. Seventy-four of the 88 families in the north of England (i.e. Cumbria, Durham, Northumberland, Teesside, and Tyne and Wear) with a boy with Duchenne muscular dystrophy who was diagnosed before January 2000 had the equipment installed. Evaluations of equipment usage and parental perceptions of the project were carried out at 3 and 12 months post-installation. Results from quantitative and qualitative interviews with parents indicated that benefits accrued to the families and to the boys themselves: family relationships can be extended, and the boys can acquire a degree of independence which, according to parents’ views, can boost self-confidence and self-esteem. As hoped, social isolation was felt to have been reduced, and an occupation, interest and enjoyment provided. The greatest use of the computer was for schoolwork with siblings sharing in this. Cost proved to be a problem for a number of families. For the project team, there were unexpected aspects: creating an e-community was more difficult than anticipated, more training was required and not all families would ever use the equipment to its fullest. However, families did emphasise the value of the project as a way of opening the world for their sons.