Online health information seeking: how people with multiple sclerosis find, assess and integrate treatment information to manage their health
Anneliese Synnot,Sophie Hill,Kerryn A. Garner,Michael Summers,Graziella Filippini,Richard H. Osborne,Sue D.P. Shapland,Cinzia Colombo,Paola Mosconi +8 more
TL;DR: There has been little exploration of the needs, experiences and preferences of people with MS for integrating treatment information into decision making, in the context of searching on the Internet, according to the aim of this study.
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Abstract: Background and objective
The Internet is increasingly prominent as a source of health information for people with multiple sclerosis (MS). But there has been little exploration of the needs, experiences and preferences of people with MS for integrating treatment information into decision making, in the context of searching on the Internet. This was the aim of our study.
Design
Sixty participants (51 people with MS; nine family members) took part in a focus group or online forum. They were asked to describe how they find and assess reliable treatment information (particularly online) and how this changes over time. Thematic analysis was underpinned by a coding frame.
Results
Participants described that there was both too much information online and too little that applied to them. They spoke of wariness and scepticism but also empowerment. The availability of up-to-date and unbiased treatment information, including practical and lifestyle-related information, was important to many. Many participants were keen to engage in a ‘research partnership’ with health professionals and developed a range of strategies to enhance the trustworthiness of online information. We use the term ‘self-regulation’ to capture the variations in information seeking behaviour that participants described over time, as they responded to their changing information needs, their emotional state and growing expertise about MS.
Conclusions
People with MS have developed a number of strategies to both find and integrate treatment information from a range of sources. Their reflections informed the development of an evidence-based consumer web site based on summaries of MS Cochrane reviews.
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Citations
Comparing Face-to-Face and Online Qualitative Research With People With Multiple Sclerosis
TL;DR: Compared face-to-face focus groups and an online forum in qualitative research with people with multiple sclerosis (MS) and family members, there was a high level of overlap in the themes generated between groups.
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'It struck at the heart of who I thought I was': A meta-synthesis of the qualitative literature examining the experiences of people with multiple sclerosis.
Jane Desborough,Crystal Brunoro,Anne Parkinson,Katrina Chisholm,Mark Elisha,Janet Drew,Vanessa Fanning,Christian J. Lueck,Anne Bruestle,Matthew C. Cook,Hanna Suominen,Antonio Tricoli,Adam Henschke,Christine Phillips +13 more
TL;DR: This review aimed to explore the experiences of people with MS, and consider the implications of these experiences for clinical practice and research.
55
Treatment with disease‐modifying drugs for people with a first clinical attack suggestive of multiple sclerosis
Graziella Filippini,Cinzia Del Giovane,Marinella Clerico,Omid Beiki,Miriam Mattoscio,F Piazza,Sten Fredrikson,Irene Tramacere,Antonio Scalfari,Georgia Salanti +9 more
TL;DR: The primary outcomes were disability-worsening, relapses, occurrence of at least one serious adverse event (AE) and withdrawing from the study or discontinuing the drug because of AEs and the credibility of the evidence was evaluated using the GRADE system.
Multiple sclerosis patients' understanding and preferences for risks and benefits of disease-modifying drugs: A systematic review.
TL;DR: Many patients' experience of information during the standard healthcare system does not provide satisfactory understanding of the risks and benefits of DMDs, and effective ways to communicate risk and benefit DMD information when making shared treatment decisions needs to be identified.
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References
•Journal Article
Focus Groups: A Practical Guide for Applied Research
Focus Groups: A Practical Guide for Applied Research
Edward F. McQuarrie,Richard A. Krueger +1 more
10.7K
Qualitative Research: Introducing focus groups
TL;DR: This paper introduces focus group methodology, gives advice on group composition, running the groups, and analysing the results, and gives advice to researchers on how to run and manage focus groups.
7.1K
Health literacy and public health : a systematic review and integration of definitions and models
Kristine Sørensen,Stephan Van den Broucke,James Fullam,Gerardine Doyle,J Pelikan,Zofia Slonska,Helmut Brand +6 more
TL;DR: An integrative conceptual model was developed containing 12 dimensions referring to the knowledge, motivation and competencies of accessing, understanding, appraising and applying health-related information within the healthcare, disease prevention and health promotion setting, respectively.
The methodology of focus groups: the importance of interaction between research participants
TL;DR: Focus group methodology is introduced, ways of conducting such groups are explored and what this technique of data collection can offer researchers in general and medical sociologists in particular are examined.
4.3K