Disadvantages of online support groups for people with arthritis, fibromyalgia and breast cancer disproved

INTRODUCTION: People in stressful circumstances, such as serious health conditions, often turn to support groups. With the increase in the availability and popularity of internet, the possibility has arisen to join support groups online. Various authors have raised attention for potential disadvantages of these groups, such as the lack of control of the quality of the information, criticism on health care services, delay of responses to questions, expression of negative emotions, reinforcement of negative emotions and negative remarks to other participants. However, data are scarce. PURPOSE: To explore to what extent potential disadvantages actually occur in online support groups. In addition, we examined characteristics of participants of online support groups, the topics that are discussed and the self-help mechanisms that are used. METHODS: A content analysis was performed on a random sample of 1500 messages from publicly available online support groups for patients with arthritis, fibromyalgia and breast cancer. The text of each posting was content coded by two raters. The levels of inter-rater reliability were acceptable (Cohen’s kappa ranged from .66 to 1.00). Postings that contained medical information were evaluated by an oncologist (WMS) and by a rheumatologist in training (CEIL). RESULTS: The online support groups were mainly used by female patients (91%). In total 42% of the postings contained “off topic” remarks. Frequently discussed health related topics were “restrictions in daily life” (26%) and “regular medication” (19%). The most common types of self-help mechanisms used in online support groups were sharing of personal experiences (51%), provision of information (44%) and empathy and support (30%). Only in a minor proportion of the postings, potential disadvantages were present. Most postings containing medical information were classified as conventional (79%). According to the medical specialists none of the postings contained information that was potentially dangerous to others. Only in 2% of postings health care services were criticized. The names of health care professionals were not found in any of the postings. Posted questions usually received an adequate response within a reasonable period of time. The expressions of negative emotions were limited (10%) and were seldom reinforced by other participants. Also negative remarks directed at other participants were not frequently found (1%). CONCLUSIONS: The various disadvantages of online support groups that were mentioned in literature could not be confirmed. Therefore, this study suggests that online support groups are a viable option for support.