Online health information seeking: How people with multiple sclerosis find, assess and integrate treatment information to manage their health

TY - JOUR

T1 - Online health information seeking

T2 - How people with multiple sclerosis find, assess and integrate treatment information to manage their health

AU - Synnot, Anneliese J.

AU - Hill, Sophie J.

AU - Garner, Kerryn A.

AU - Summers, Michael P.

AU - Filippini, Graziella

AU - Osborne, Richard H.

AU - Shapland, Sue D. P.

AU - Colombo, Cinzia

AU - Mosconi, Paola

PY - 2016/6/1

Y1 - 2016/6/1

N2 - 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.

AB - 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.

KW - Health information

KW - Internet

KW - Multiple sclerosis

KW - Qualitative research

UR - http://www.scopus.com/inward/record.url?scp=84964460607&partnerID=8YFLogxK

U2 - 10.1111/hex.12253

DO - 10.1111/hex.12253

M3 - Journal article

C2 - 25165024

SN - 1369-6513

VL - 19

SP - 727

EP - 737

JO - Health Expectations

JF - Health Expectations

IS - 3

ER -