Table 2 Studies of collective empowerment of online communities through patient participation
Goals | Approach and context | Contributions to the collective empowerment of the online patient community | |
|---|---|---|---|
Petrič and Petrovčič [44] | Determine to what extent the determinants of individual empowerment are related to collective power | Empirical approach. Pilot study with 270 users of the same forum and then with members of 81 online forums | Identification of congruence between individual and collective empowerment: • Sense of virtual community • Engagement with the organization and the community’s vision • Participation in the daily life, activities, and demonstrations organized by the community through positive interactions The emphasis is on the quality of social interactions, mutual respect, tolerance, and critical understanding. |
Ammari and Schoenebeck [45] | Contribute new knowledge on the role of social media in the empowerment of parents of sick children | Empirical approach 43 interviews with parents of children with specific health problems | Introduction of a new network empowerment model Identification of three stages: • Join an online forum after diagnosis • Ask other parents about services • Become advocates for their children’s needs Highlights the role of “veteran” parents who • Advocate at a broader level than just for the needs of their own children • Teach other parents how to mobilize resources • Sometimes educate legislators |
Demjén [46] | Study how patients use humor in online discussions of their experiences with cancer. | Empirical approach Analysis of 530,055 words on a thread about humor in an online forum for English cancer patients | Highlights the empowering potential for humor: • Makes it possible to discuss taboo topics • Builds rapport among members • Bonds the community • Affirms the collective power of resistance to a sometimes uncontrollable disease • Gives the feeling of taking control and reacting freely Humor is enabled by the relative anonymity of virtual communities and their constant accessibility. |
Atanasova and Petric [47] | Develop a measurement instrument to evaluate the collective empowerment of online patient communities and then test its validity | Empirical approach Pilot study with 280 members of an online patient community in Slovenia and then with about 30,000 members | Creation of a measurement scale for collective empowerment along two dimensions: • Knowledge of resources and methods used to impact change • The mobilization of these resources for collective action Also related: • The sense of virtual community • Engagement in community organization • Intensity of participation • Civic participation • Offline emotional support |