Narratives of empowerment and compliance: studies of communication in online patient support groups

Abstract

Purpose: New technologies enable new forms of patient participation in health care. The article discusses whether communication in online patient support groups is a source of individual as well as collective empowerment or to be understood within the tradition of compliance. The discussion is based on a qualitative analysis of patient communication in two online groups on the Danish portal sundhed.dk, one for lung patients and one for women with fertility problems.

Methods: The object of study is the total sum of postings during a specific period of time - a total of 4301 posts are included. The textmaterial was analyzed according to the textual paradigm of Paul Ricoeur, and the three steps of critical interpretation. Thus, the analysis moves from describing communicative characteristics of the site to a thorough semantic analysis of its narrative structure of construing meaning, interaction and collective identity, and finally as a source of collective action.

Results: The meta-narratives of the two groups confirm online patient support groups for individual empowerment, for collective group identity, but not for collective empowerment. The collective identities of patienthood on the two sites are created by the users (patients) through specific styles of communication and interaction, referred to as 'multi-logical narratives'.

Conclusion: In spite of the potential of online communities of opening up health care to the critical voice of the public, the analysis points to a synthesis of the otherwise opposite positions of empowerment and compliance in patient care. On a collective level, the site is empowering the individual users to comply with 'doctor's recommendations' as a group.

Keywords: COPD; Communication; Compliance; Empowerment; Narrative; Online support groups; Recurrent miscarriages.