2134/3722
Mark Hepworth
Mark
Hepworth
Janet Harrison
Janet
Harrison
Nicole James
Nicole
James
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
Loughborough University
2008
untagged
Information Systems
Library and Information Studies
Information and Computing Sciences not elsewhere classified
2008-10-10 07:46:28
Journal contribution
https://repository.lboro.ac.uk/articles/journal_contribution/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/9413861
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.