Narratives of empowerment and compliance

Studies of communication in online patient support groups

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Abstract

Purpose: New technologies enable new forms of patient participation in health care. Thearticle discusses whether communication in online patient support groups is a source ofindividual as well as collective empowerment or to be understood within the tradition ofcompliance. The discussion is based on a qualitative analysis of patient communicationin two online groups on the Danish portal sundhed.dk, one for lung patients and one forwomen 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 textualparadigm of Paul Ricoeur, and the three steps of critical interpretation. Thus, the analysismoves from describing communicative characteristics of the site to a thorough semanticanalysis 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 forindividual 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 nar-ratives’.Conclusion: In spite of the potential of online communities of opening up health care tothe critical voice of the public, the analysis points to a synthesis of the otherwise oppositepositions of empowerment and compliance in patient care. On a collective level, the site isempowering the individual users to comply with ‘doctor’s recommendations’ as a group.
Original languageEnglish
JournalInternational Journal of Medical Informatics
Volume82
Issue number12
Pages (from-to)386–394
Number of pages9
ISSN1386-5056
DOIs
Publication statusPublished - Dec 2013

Cite this

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title = "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. Thearticle discusses whether communication in online patient support groups is a source ofindividual as well as collective empowerment or to be understood within the tradition ofcompliance. The discussion is based on a qualitative analysis of patient communicationin two online groups on the Danish portal sundhed.dk, one for lung patients and one forwomen 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 textualparadigm of Paul Ricoeur, and the three steps of critical interpretation. Thus, the analysismoves from describing communicative characteristics of the site to a thorough semanticanalysis 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 forindividual 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 nar-ratives’.Conclusion: In spite of the potential of online communities of opening up health care tothe critical voice of the public, the analysis points to a synthesis of the otherwise oppositepositions of empowerment and compliance in patient care. On a collective level, the site isempowering the individual users to comply with ‘doctor’s recommendations’ as a group.",
keywords = "Online support groups, Narrative, Empowerment, Compliance, Communication, COPD, Recurrent miscarriages",
author = "Helle Wentzer and Ann Bygholm",
year = "2013",
month = "12",
doi = "10.1016/j.ijmedinf.2013.01.008",
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Narratives of empowerment and compliance : Studies of communication in online patient support groups. / Wentzer, Helle; Bygholm, Ann.

In: International Journal of Medical Informatics, Vol. 82, No. 12, 12.2013, p. 386–394.

Research output: Contribution to journalJournal articleResearchpeer-review

TY - JOUR

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T2 - Studies of communication in online patient support groups

AU - Wentzer, Helle

AU - Bygholm, Ann

PY - 2013/12

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N2 - Purpose: New technologies enable new forms of patient participation in health care. Thearticle discusses whether communication in online patient support groups is a source ofindividual as well as collective empowerment or to be understood within the tradition ofcompliance. The discussion is based on a qualitative analysis of patient communicationin two online groups on the Danish portal sundhed.dk, one for lung patients and one forwomen 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 textualparadigm of Paul Ricoeur, and the three steps of critical interpretation. Thus, the analysismoves from describing communicative characteristics of the site to a thorough semanticanalysis 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 forindividual 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 nar-ratives’.Conclusion: In spite of the potential of online communities of opening up health care tothe critical voice of the public, the analysis points to a synthesis of the otherwise oppositepositions of empowerment and compliance in patient care. On a collective level, the site isempowering the individual users to comply with ‘doctor’s recommendations’ as a group.

AB - Purpose: New technologies enable new forms of patient participation in health care. Thearticle discusses whether communication in online patient support groups is a source ofindividual as well as collective empowerment or to be understood within the tradition ofcompliance. The discussion is based on a qualitative analysis of patient communicationin two online groups on the Danish portal sundhed.dk, one for lung patients and one forwomen 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 textualparadigm of Paul Ricoeur, and the three steps of critical interpretation. Thus, the analysismoves from describing communicative characteristics of the site to a thorough semanticanalysis 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 forindividual 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 nar-ratives’.Conclusion: In spite of the potential of online communities of opening up health care tothe critical voice of the public, the analysis points to a synthesis of the otherwise oppositepositions of empowerment and compliance in patient care. On a collective level, the site isempowering the individual users to comply with ‘doctor’s recommendations’ as a group.

KW - Online support groups

KW - Narrative

KW - Empowerment

KW - Compliance

KW - Communication

KW - COPD

KW - Recurrent miscarriages

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JF - International Journal of Medical Informatics

SN - 1386-5056

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