A Survey of the Information Needs of People with Multiple Sclerosis

Hepworth, Mark; Harrison, Janet

doi:10.1177/1460458204040668

Cited by 57 publications

(67 citation statements)

References 9 publications

(9 reference statements)

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“…This has certainly been found to be the case for many patients with chronic conditions, e.g. Multiple Sclerosis as seen in the work by Hepworth and Harrison 33 . The discussions on the SSAD site confirm this theory.…”

Section: Resultssupporting

confidence: 54%

‘Talking about my generation’: a state‐of‐the‐art review of health information for men in the andropause

Harrison

2011

Health Info Libraries J

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The focus of this article is the availability and use of information in the UK about the male menopause or as it's beginning to be known by the general public and health professionals, the andropause. The experiences of men suffering from the andropause today are reflective of menopausal women some 20 or 30 years ago. Ignorance and fear of the andropause condition abounds in the general public and amongst health professionals. There is a paucity of information in the literature about the symptoms and condition of the andropause. The review considers the provision and use of information available for men in the andropause in the public domain, examining both NHS and condition specific sources. The use of electronic sources is specifically reviewed, including an online forum. The use of electronic sources is indicative of other health information users. The reviewer concludes by suggesting that increased knowledge sharing is required by health professionals and the general public about the symptoms and condition of the andropause. It is recommended that men in the andropause identify a 'champion' to assist their cause. This will help in gaining greater recognition and understanding of the condition and attract the most appropriate treatment.Keywords: andropause, consumer health information, male menopause, men's health. Key MessagesImplications for Practice • Development of new service level agreements with GPs and primary care providers.• Develop training packages for healthcare professionals to access.• Creation of guidelines for informing healthcare professionals about the andropause.• Exploring opportunities for shared services to meet new demands for information from the general public and healthcare professionals in the primary sector.• Development of information for the general public about andropause for different types of medium including the Internet, and development of information packages for NHS Choices and NHS Direct. Implications for Policy• There is a dearth of education for healthcare professionals in the UK about the andropause. There is also a need for best evidence to be available for the healthcare professionals and the general public.• There is an opportunity for health information practitioners to provide unbiased, current information to educate the healthcare professionals and the public in the access and use of the best evidence available.

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Section: Resultssupporting

confidence: 54%

‘Talking about my generation’: a state‐of‐the‐art review of health information for men in the andropause

Harrison

2011

Health Info Libraries J

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“…The concept of "information needs" refers to the demands which may be vocal or written and made to a library or to some other information system (Brittain, 1970). It could be interpreted, as viewed by Hepworth et al (2002), as data; information and knowledge that helps cope with situations and can lead to more effective management of the condition and improved quality of life. According to Bystrom (1999), in professional settings, information needs could be classified according to their connection with tasks.…”

Section: Literature Reviewmentioning

confidence: 99%

Information needs of local domestic workers in the Arab Republic of Egypt

Mansour

2015

The Electronic Library

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Access to this document was granted through an Emerald subscription provided by emerald-srm: 463575 [] For AuthorsIf you would like to write for this, or any other Emerald publication, then please use our Emerald for Authors service information about how to choose which publication to write for and submission guidelines are available for all. Please visit www.emeraldinsight.com/authors for more information. About Emerald www.emeraldinsight.comEmerald is a global publisher linking research and practice to the benefit of society. The company manages a portfolio of more than 290 journals and over 2,350 books and book series volumes, as well as providing an extensive range of online products and additional customer resources and services.Emerald is both COUNTER 4 and TRANSFER compliant. The organization is a partner of the Committee on Publication Ethics (COPE) and also works with Portico and the LOCKSS initiative for digital archive preservation. AbstractPurpose -The main purpose of this study is to provide first-hand information regarding domestic labour/labourers in Egypt. The research investigates the information rights and needs of the vulnerable and marginalized groups of domestic workers in Egypt in terms of their thoughts, perceptions, attitudes, motivations, techniques, preferences, ways, tools, and problems they encounter using and accessing information. The study documents the many different characteristics of local domestic workers in Egypt that affect their use of and access to information.Design/methodology/approach -The methodology used here was an adaptive form of snowball sampling of a heterogeneous demographic group of participants in local domestic work in Egypt, used to select focus groups to explore a range of relevant issues.Findings -Demographically, this study showed that local domestic labour in Egypt, to a great extent, is occupied and performed by women and children, and the average age of the total interviewed participants was around 31 years. Over half of the participants were uneducated, followed by nearly a quarter who had no formal education, and then a small number had some primary education. This study concluded that a large number of participants were described as illiterate and non-skilled labourers. Participants' income proved that it was one of barriers to use of and access to information where a large number of participants were labelled as low-income workers. The information seeking behaviour profile of participants indicated a preference for verbal over written, informal over formal, and undocumented over documented information channels and sources in order to solve problems relating to their daily existence, using some helping tools and devices, especially cell phones. The most popular information sources mentioned and followed by participants were verbal information with friends, peers, and colleagues in neighbouring households either via telephones, especially cell phones, or face-toface meetings. TV, radio, newspapers, and magazines, respectively, were the most formal ...

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“…Practical information centred on the patient is seen as being important in the early stages of the disease as carers needed to understand both the symptoms and behaviours they might expect of someone with MS. As carers became reconciled to the progression of the disease in the pwMS they became more interested in hearing accounts from other carers, accepting that they already knew about the condition itself. Engagement with carer experiences online reflects findings highlighting the changing information needs of people and carers of MS 7,8 . Carer accounts offered more practical advice on establishing daily care routines or understanding entitlements.…”

Section: Discussionmentioning

confidence: 99%

“…In the UK alone, there are 100,000 people with the MS and over 2 million people are affected through their role as carer. 5 MS patients have a range of information needs 7,8 and there is increasing evidence to suggest that MS patients are starting to choose the Internet as their first port of call for health information 9 searching for information on symptom management, treatment options and the practicalities of day-to-day living 10,11 . Over time, MS patients show different patterns of web use and come to 'self-regulate' their searches 11 using more selective search terms as their knowledge about their own condition grows, or adopting information avoidance strategies at the beginning or the end of the disease timeline 10 .…”

Section: Introductionmentioning

confidence: 99%

How do carers of people with multiple sclerosis engage with websites containing the personal experiences of other carers and patients?

Sillence

Hardy

Briggs

et al. 2016

Health Informatics J

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The Internet supports peer-to-peer healthcare and the promotion of shared patient narratives.Websites incorporating these narratives or personal accounts are known to offer support to carers of people with multiple sclerosis (MS), but little is known about how carers make choices about what websites to visit and why. Twenty carers viewed a range of websites and online personal accounts about MS and subsequently took part in either a group discussion or an individual interview, followed 2 weeks and 12 months later by a telephone interview.Data were subject to thematic analysis with the aim of understanding more about what drives engagement with the stories of others. We found that carers' interpersonal and coping needs shaped their selection of online narratives and that they were most likely to engage with online personal accounts that provided a good match in terms of experience and perspective.

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A Survey of the Information Needs of People with Multiple Sclerosis

Cited by 57 publications

References 9 publications

‘Talking about my generation’: a state‐of‐the‐art review of health information for men in the andropause

‘Talking about my generation’: a state‐of‐the‐art review of health information for men in the andropause

Information needs of local domestic workers in the Arab Republic of Egypt

How do carers of people with multiple sclerosis engage with websites containing the personal experiences of other carers and patients?

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