Using the Internet? The experiences of parents of disabled children

Background Research has offered consistent evidence that the provision of crucial information to parents of disabled children, at a time when they need it and in a form that they can use, is an intractable problem. This makes it important to develop new and effective approaches to information presentation, distribution and delivery. The Internet has been put forward as a medium through which families' needs for information and services can be met. This paper looks at parents of disabled children's experience of using it. Methods A cross-sectional survey of 3014 adult carers, of which 788 were carers of disabled children aged 0-17. Data were collected using a postal questionnaire. Results A high proportion (75%) had previously used the Internet. Of these, 63% were frequent users and 91% were using it at home. Popular uses were emailing, obtaining information about caring, ordering equipment and shopping online. Despite positive benefits, users experienced problems relating to technical issues and equipment and system design. Lack of time owing to caring and other circumstances was an issue for over half of all users. Never users were more likely to be living in rented accommodation, be unemployed and not have a PC at home. Reasons for not using the Internet included lack of access to equipment, cost and lack of skill. Conclusions For some parents the Internet is a viable and flexible medium for accessing useful information and services. However, caution about the extent to which it becomes the primary means for delivering information is needed. Technical problems and lack of time can make it difficult to search for complex information. The 'digital divide' between users and non-users makes it crucial that issues of cost, lack of equipment and skill be addressed. Information needs to be made available in other forms to ensure that those who cannot or do not wish to use the Internet are not socially excluded.