A discussion of the information needs of people with multiple sclerosis (MS) and the implications for information provision based on a national UK survey of people with MS
This research took place between January and October 2002. It was conducted by the Department of Information Science at Loughborough University and was commissioned and funded by the Multiple Sclerosis Trust (MS Trust). In this article the identified information needs are discussed and possible solutions explored including the use of Extensible Mark–up Language (XML) and Extensible Stylesheet Language (XSL). Qualitative and quantitative methods were used to study the information needs of people with multiple sclerosis (people with MS) in the United Kingdom. 103 people with MS were involved in focus groups that helped to identify significant situations that people with MS had experienced. 4100 people with MS were sent questionnaires (approximately 5% of the MS population). 2030 (49.5%) responded in the time specified. Categories of information need were identified. Their importance and difficulty in obtaining them quantified. The research highlighted how, although people shared many information needs, there were significant differences in terms of: ♦ people’s desire for the information (some people did not want apparently useful information); ♦ the topics they were interested in (due to their situation); ♦ how they wanted that information (due to the physical and psychological condition of the person). Information provision to people with MS was found to have improved dramatically over the last seven years. Out of those respondents who had been diagnosed in the last five years 71% thought they had received information whereas 29% did not, whereas only 29% diagnosed in 1980 stated that they received information. Taking the total surveyed population 43% thought they had not received information. Information provision was found to be inconsistent in terms of subjects covered. However it should be borne in mind that at the time of diagnosis, and also afterwards, it may be difficult for people to take on board information for a variety of reasons. Furthermore, as indicated above, different individual needs means that information provision is a complex task. Many intervening factors can make it fail. The research made it clear how access to relevant information, provided in an appropriate way, could significantly improve the quality of life of the person 2 with MS and that there is considerable scope for improving provision of information to people with MS.
- Information Science