Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia.
Ever since the rise of online support groups it has been presumed that there is an empowering effect from patients' participating in these groups, despite a lack of evidence to back up this assumption. In this study we explored if, and in which ways, patients feel empowered by participation. Additionally, we studied which empowering and disempowering processes occur as a result of taking part in these groups. To accomplish this aim, we interviewed 32 participants of online support groups. This analysis revealed the following empowering processes: exchanging information, encountering emotional support, finding recognition, sharing experiences, helping others, and amusement. Disempowering processes were mentioned far less often. Empowering outcomes mentioned were being better informed; feeling confident in the relationship with their physician, their treatment, and their social environment; improved acceptance of the disease; increased optimism and control; enhanced self-esteem and social well-being; and collective action. This article demonstrates that participation in online support groups can make a valuable contribution to the emergence of empowered patients.
van Uden-Kraan
Cornelia F
CF
Institute for Behavioral Research, Faculty of Behavioral Sciences, University of Twente, Enschede, The Netherlands. c.f.vanuden-kraan@gw.utwente.nl
Drossaert
Constance H C
CH
Taal
Erik
E
Shaw
Bret R
BR
Seydel
Erwin R
ER
van de Laar
Mart A F J
MA
D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001168:Arthritis / Q000523:psychology*; D001294:Attitude to Health; D001943:Breast Neoplasms / Q000523:psychology*; D005260:Female; D005356:Fibromyalgia / Q000523:psychology*; D006801:Humans; D020407:Internet; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010358:Patient Participation; D036301:Qualitative Research; D012657:Self-Help Groups; D012944:Social Support; D013637:Tape Recording; D016896:Treatment Outcome