{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,13]],"date-time":"2026-03-13T14:06:26Z","timestamp":1773410786038,"version":"3.50.1"},"reference-count":37,"publisher":"Emerald","issue":"5\/6","license":[{"start":{"date-parts":[[2003,12,1]],"date-time":"2003-12-01T00:00:00Z","timestamp":1070236800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.emerald.com\/insight\/site-policies"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2003,12,1]]},"abstract":"<jats:p>Qualitative and quantitative methods were used to study the information needs of people with multiple sclerosis (MS) in the UK. Categories of information need were identified; their importance and difficulty in obtaining them quantified. The research highlighted how there were significant differences in terms of people\u2019s desire for the information, the topics in which they were interested and how they wanted that information. Information provision to people with MS was found to have improved dramatically over the last seven years, but was found to be inconsistent in terms of subjects covered. However, it should be borne in mind that it may be difficult for people to take on board information for a variety of reasons. Furthermore, different individual needs mean 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 with MS and that there is considerable scope for improving provision of information to people with MS.<\/jats:p>","DOI":"10.1108\/00012530310498860","type":"journal-article","created":{"date-parts":[[2004,2,4]],"date-time":"2004-02-04T19:49:53Z","timestamp":1075924193000},"page":"290-303","source":"Crossref","is-referenced-by-count":27,"title":["Information needs of people with multiple sclerosis and the implications for information provision based on a national UK survey"],"prefix":"10.1108","volume":"55","author":[{"given":"Mark","family":"Hepworth","sequence":"first","affiliation":[]},{"given":"Janet","family":"Harrison","sequence":"additional","affiliation":[]},{"given":"Nicole","family":"James","sequence":"additional","affiliation":[]}],"member":"140","reference":[{"key":"key2022021120111717600_B1","unstructured":"Baker, L. (1994), \u201cMonitors and blunters: patient health information seeking from a different perspective\u201d, Bibliotheca Medica Canadiana, Vol. 16 No. 2, pp. 60\u20103."},{"key":"key2022021120111717600_B2","doi-asserted-by":"crossref","unstructured":"Baker, L. (1997), \u201cPreference for physicians as information providers by women with MS: a potential cause for communication problems?\u201d, Journal of Documentation, Vol. 53 No. 3, pp. 251\u201062.","DOI":"10.1108\/EUM0000000007199"},{"key":"key2022021120111717600_B3","doi-asserted-by":"crossref","unstructured":"Bates, M. (1989), \u201cThe design of browsing and berry\u2010picking techniques for the online search interface\u201d, Online Review, Vol. 13 No. 5, pp. 407\u201024.","DOI":"10.1108\/eb024320"},{"key":"key2022021120111717600_B4","doi-asserted-by":"crossref","unstructured":"Bental, D., Cawsey, A. and Jones, R. (1999), \u201cPatient information systems that tailor to the individual\u201d, Journal of Patient Education and Counselling, Vol. 36 No. 2, pp. 171\u201080.","DOI":"10.1016\/S0738-3991(98)00133-5"},{"key":"key2022021120111717600_B5","unstructured":"Centre for Health Information Quality (2003), available at: www.hfht.org\/chiq\/index.htm (accessed 22 May)."},{"key":"key2022021120111717600_B6","unstructured":"Compston, A. (1998), McAlpine\u2019s Multiple Sclerosis, 3rd ed., Churchill Livingstone, London."},{"key":"key2022021120111717600_B7","doi-asserted-by":"crossref","unstructured":"Dervin, B. (1999), \u201cOn studying information seeking methodologically: the implications of connecting metatheory to method\u201d, Information Processing and Management, Vol. 35 No. 6, pp. 727\u201050.","DOI":"10.1016\/S0306-4573(99)00023-0"},{"key":"key2022021120111717600_B8","unstructured":"Discern (2003), \u201cWeb site evaluation too\u201d, available at: www.discern.org.uk\/discern__about_this_site.htm (accessed 27 May)."},{"key":"key2022021120111717600_B9","unstructured":"Duman, M. (2003), Producing Patient Information: How to Research, Develop and Produce Effective Information Resources, King\u2019s Fund, London."},{"key":"key2022021120111717600_B10","doi-asserted-by":"crossref","unstructured":"Gregory, R., Disler, P. and Firth, S. (1996), \u201cCaregivers of people with multiple sclerosis: a survey in New Zealand\u201d, Rehab. Nurs., Vol. 21 No. 1, pp. 31\u20107.","DOI":"10.1002\/j.2048-7940.1996.tb01670.x"},{"key":"key2022021120111717600_B11","unstructured":"Harrison, J., Hepworth, M. and Chazal, P. (2002), NHS and Social Care Library & Information Services Interface: A Study of Social Workers\u2019 Information Needs, Department of Information Science, Loughborough University, Loughborough."},{"key":"key2022021120111717600_B12","unstructured":"Hepworth, M., Harrison, J. and Odhiambo, F. (2000), Leicestershire Informal Carers Study, Department of Information Science, Loughborough University, Loughborough."},{"key":"key2022021120111717600_B13","unstructured":"Hetherington, G. and Young, C. (2001), My Dad\u2019s Got MS, MS Trust\/MS Society, Letchworth."},{"key":"key2022021120111717600_B14","unstructured":"ICONOCLAST (2003), \u201cICONOCLAST: integrating constraints on layout and style\u201d, available at: www.itri.bton.ac.uk\/projects\/iconoclast\/ (accessed 24 May)."},{"key":"key2022021120111717600_B15","unstructured":"Mates, B. (1995), Adaptive Technology for the Internet, American Library Association, Chicago, IL."},{"key":"key2022021120111717600_B16","doi-asserted-by":"crossref","unstructured":"Matson, R. and Brooks, N. (1977), \u201cAdjusting to multiple sclerosis: an exploratory study\u201d, Social Science and Medicine, Vol. 11, pp. 245\u201050.","DOI":"10.1016\/0037-7856(77)90071-3"},{"key":"key2022021120111717600_B17","doi-asserted-by":"crossref","unstructured":"Miller, W. and Rollnick, S. (2002), Motivational Interviewing: Preparing People for Change, 2nd ed., Guilford Press, New York, NY.","DOI":"10.1097\/01445442-200305000-00013"},{"key":"key2022021120111717600_B18","unstructured":"MS Trust, (2002), Tips for Living with MS: Written by and for People with MS, MS Trust, Letchworth."},{"key":"key2022021120111717600_B19","unstructured":"National Multiple Sclerosis Society (2003), \u201cLibrary and literature\u201d, available at: www.nationalmssociety.org\/Sourcebook\u2010Exercise.asp (accessed 19 May)."},{"key":"key2022021120111717600_B20","doi-asserted-by":"crossref","unstructured":"Oppenheim, C. and Selby, K. (1999), \u201cAccess to information on the WWW for blind and visually disabled people\u201d, Aslib Proceedings: New Information Perspectives, Vol. 51 No. 10, pp. 335\u201045.","DOI":"10.1108\/EUM0000000006993"},{"key":"key2022021120111717600_B21","doi-asserted-by":"crossref","unstructured":"Osiobe, S.A. (1998), \u201cInformation\u2010seeking behaviour\u201d, International Library Review, Vol. 20 No. 3, pp. 337\u201046.","DOI":"10.1016\/0020-7837(88)90006-4"},{"key":"key2022021120111717600_B22","unstructured":"Pritchard, C. (2003), \u201cThe information needs of people with Alzheimer\u2019s disease\u201d, Master\u2019s thesis, Department of Information Science, Loughborough University, Loughborough."},{"key":"key2022021120111717600_B23","unstructured":"RNIB (2002), \u201cRNIB campaigns: the Disability Act\u201d, available at: www.rnib.org.uk\/campaign\/ddapam.htm (accessed 18 March 2003)."},{"key":"key2022021120111717600_B24","unstructured":"Robinson, I., Hunter, M. and Neilson, S. (1996), A Dispatch from the Front Line: The Views of People with Multiple Aclerosis about Their Needs. A Qualitative Approach, a report for the Multiple Sclerosis Society, Final draft, Brunel MS Research Unit, Uxbridge."},{"key":"key2022021120111717600_B25","unstructured":"Scherer, M. and Galvin, J. (1999), Evaluating, Selecting and Using Appropriate Assistive Technology, Aspen Publishers, Gaithersburg, MD."},{"key":"key2022021120111717600_B26","doi-asserted-by":"crossref","unstructured":"Somerset, M., Campbell, R., Sharp, D. and Peters, T. (2001), \u201cWhat do people with MS want and expect from health\u2010care services?\u201d, Health Expectations, Vol. 4 No. 1, pp. 29\u201037.","DOI":"10.1046\/j.1369-6513.2001.00111.x"},{"key":"key2022021120111717600_B27","doi-asserted-by":"crossref","unstructured":"Somerset, M., Peters, T., Sharp, D. and Campbell, R. (2003), \u201cFactors that contribute to quality of life outcomes prioritised by people with multiple sclerosis\u201d, Quality of Life Research, Vol. 12 No. 1\/2, pp. 21\u20109.","DOI":"10.1023\/A:1022088203586"},{"key":"key2022021120111717600_B28","doi-asserted-by":"crossref","unstructured":"Stewart, D.C. and Sullivan, T.J. (1982), \u201cIllness behaviour and the sick role in chronic disease\u201d, Social Science and Medicine, Vol. 16 No. 15, pp. 1397\u2010404.","DOI":"10.1016\/0277-9536(82)90134-4"},{"key":"key2022021120111717600_B29","unstructured":"W3C (2003a), \u201cIntroduction to XML\u201d, available at: www.w3schools.com\/xml\/xml_whatis.asp (accessed 23 May)."},{"key":"key2022021120111717600_B30","unstructured":"W3C (2003b), \u201cXSL tutorial\u201d, available at: www.w3schools.com\/xsl\/default.asp (accessed 23 May)."},{"key":"key2022021120111717600_B31","unstructured":"WAI (2003), Web Accessibility Initiative, available at: www.w3.org\/WAI\/ (accessed 25 May)."},{"key":"key2022021120111717600_B32","doi-asserted-by":"crossref","unstructured":"Walker, E. and Dewar, B. (2001), \u201cHow do we facilitate carers\u2019 involvement in decision making?\u201d, Journal of Advanced Nursing, Vol. 34 No. 3, pp. 329\u201037.","DOI":"10.1046\/j.1365-2648.2001.01762.x"},{"key":"key2022021120111717600_B33","doi-asserted-by":"crossref","unstructured":"Ward, H. and Cavanagh, J. (1997), \u201cA descriptive study of the self\u2010perceived needs of carers for dependants with a range of long\u2010term problems\u201d, Journal of Public Health Medicine, Vol. 19 No. 3, pp. 281\u20107.","DOI":"10.1093\/oxfordjournals.pubmed.a024631"},{"key":"key2022021120111717600_B34","unstructured":"Welcome to Plain English Campaign (2003), available at: www.plainenglish.co.uk\/ (accessed 26 May)."},{"key":"key2022021120111717600_B35","doi-asserted-by":"crossref","unstructured":"Wilson, T. (1999), \u201cModels in information behaviour research\u201d, Journal of Documentation, Vol. 55 No. 3, pp. 249\u201070.","DOI":"10.1108\/EUM0000000007145"},{"key":"key2022021120111717600_B36","doi-asserted-by":"crossref","unstructured":"Wilson, T., Ford, N., Ellis, D., Foster, A. and Spink, A. (2002), \u201cInformation seeking and mediated searching. Part 2. Uncertainty and its correlates\u201d, Journal of Information Science and Technology, Vol. 53 No. 9, pp. 704\u201015.","DOI":"10.1002\/asi.10082"},{"key":"key2022021120111717600_B37","doi-asserted-by":"crossref","unstructured":"Wollin, J., Dale, H., Spenser, N. and Walsh, A. (2000), \u201cWhat people with newly diagnosed MS (and their families and friends) need to know\u201d, International Journal of MS Care, Vol. 2 No. 3, p. 4, available at: www.mscare.com\/ (accessed 22 April 2003).","DOI":"10.7224\/1537-2073-2.3.29"}],"container-title":["Aslib Proceedings"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/www.emeraldinsight.com\/doi\/full-xml\/10.1108\/00012530310498860","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.emerald.com\/insight\/content\/doi\/10.1108\/00012530310498860\/full\/xml","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.emerald.com\/insight\/content\/doi\/10.1108\/00012530310498860\/full\/html","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,7,24]],"date-time":"2025-07-24T11:36:28Z","timestamp":1753356988000},"score":1,"resource":{"primary":{"URL":"http:\/\/www.emerald.com\/ajim\/article\/55\/5-6\/290-303\/46961"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2003,12,1]]},"references-count":37,"journal-issue":{"issue":"5\/6","published-print":{"date-parts":[[2003,12,1]]}},"alternative-id":["10.1108\/00012530310498860"],"URL":"https:\/\/doi.org\/10.1108\/00012530310498860","relation":{},"ISSN":["0001-253X"],"issn-type":[{"value":"0001-253X","type":"print"}],"subject":[],"published":{"date-parts":[[2003,12,1]]}}}