Abstract
ABSTRACT BACKGROUND AND OBJECTIVES: Analyze the interactive behavior, characteristics, perception of social support, and interests of patients with fibromyalgia on online discussion groups. METHODS: A participatory netnography has been conducted for 6 months on Facebook in order to keep track of a fibromyalgia community with more than 8,000 members. An electronic survey composed by a validated social support scale was sent to the members of the group. Another online survey was applied by the group coordinator in order to build the users' profile. RESULTS: The online environment has often been indicated as the only place to get something off one's chest. Regular testimonials on social discrimination due to Fibromyalgia were recorded, coming from the family itself, from friends and even from health professionals. Patients' rights and new treatments are among the topics of greatest interest. The target group seemed to have a social echo, but it has difficulties to generate engagement among its members. Low social support was reported by most of the 444 respondents. However, many also criticized the group positively. There were 3,217 people who responded the survey applied by the coordinator: 97.5% female respondents, 86.2% were between 31 and 60 years old, 60.1% were diagnosed by a rheumatologist, 16.5% by an orthopedist, and 6.8% by a general practitioner. The five most unpleasant symptoms informed were: pain, anxiety, memory problem, irritability, and tingling. CONCLUSION: New forms of online education and social support for fibromyalgia on online groups are relevant resources to be considered in patient care programs.
Highlights
The survey consisted of a social support validity scale, the Social Support Satisfaction Scale (SSSS), in addition to supplementary questions related to the subject of the study, such as amount of meaningful friendships made in the group, suggestions for improvement for future groups, positive and negative criticism regarding the network, suggestions for new activities, degree of involvement with the group, among others
It is important to highlight that before the application of the social support electronic survey; the group coordinator initiated an opinion poll with the participants of online communities on Facebook connected to the institution that she runs in order to characterize the patients with FM that participate in these discussion settings
Regular statements were recorded about social discrimination due to the disease - coming from family, friends and health professionals who often question the veracity of the symptoms, alleging to be a purely psychological syndrome, and showing discredit and ignorance
Summary
Conflict of interests: none – Sponsoring sources: Programa Telessaúde Brasil Redes. AND OBJECTIVES: Analyze the interactive behavior, characteristics, perception of social support, and interests of patients with fibromyalgia on online discussion groups. An electronic survey composed by a validated social support scale was sent to the members of the group. Another online survey was applied by the group coordinator in order to build the users’ profile. The target group seemed to have a social echo, but it has difficulties to generate engagement among its members. CONCLUSION: New forms of online education and social support for fibromyalgia on online groups are relevant resources to be considered in patient care programs.
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