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Selbsthilfe im Onlineforum bei lokal begrenztem Prostatakarzinom

Qualitative Analyse der Entscheidungsfindung

Online support groups for localized prostate cancer

Qualitative analysis of decision making

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Zusammenfassung

Hintergrund

Beim lokal begrenzten Prostatakarzinom ergibt sich die individuell „richtige“ Therapieentscheidung häufig nicht allein aus der medizinischen Konstellation. Hier ist der Austausch mit dem sozialen Umfeld von besonderer Bedeutung. Internetforen bieten eine hervorragende Möglichkeit, diese Kommunikation genauer kennenzulernen.

Material und Methoden

Wir untersuchten 82 thematisch einschlägige Threads und damit 5% des größten deutschsprachigen Onlineforums zur Prostatakrebs Selbsthilfe (http://forum.prostatakrebs-bps.de). In Anlehnung an Methoden der „grounded theory“ sowie der linguistischen Gesprächsanalyse werteten zwei der Autoren unabhängig voneinander die gesamte Stichprobe interpretativ aus.

Ergebnisse

Die um Hilfestellung gebetenen User schildern persönliche Erfahrungen und leiten daraus eine subjektive Empfehlung ab. Zugleich ist der Betroffene angehalten, die Ratschläge zu gewichten und selbst zu entscheiden. Im Forum aktive Urologen erscheinen als wichtiges Korrektiv, jedoch wird ihr Engagement recht unterschiedlich bewertet. Überwiegend diskutieren medizinische Laien mit sehr variablem Kenntnisstand, weshalb tentative Kommunikationsstrategien Verwendung finden. Die Erkrankung erscheint insgesamt sprachlich tabuisiert. Neben Behandlungsempfehlungen spielt v. a. die emotionale Unterstützung eine sehr große Rolle. Auf der gemeinsamen Basis persönlicher Betroffenheit entsteht ein Wir-Gefühl, das den Austausch im Onlineforum für viele User besonders wertvoll macht.

Schlussfolgerung

Onlineforen ermöglichen einen regen Austausch zwischen Betroffenen, der zugleich Information, Ratschläge und emotionale Unterstützung vermittelt. Die Kenntnis solcher Onlineangebote ist hilfreich, um weiterhin eine gute Beratung unserer Patienten zu gewährleisten.

Abstract

Background

In localized prostate cancer individual treatment decisions cannot be reached relying exclusively on medical data. Therefore, social interaction is of considerable importance and online support groups allow us to get to know a facet of this communication.

Material and methods

We investigated 82 thematically relevant threads representing 5% of the largest German online support group on prostate cancer (http://forum.prostatakrebs-bps.de). Two independent investigators used methods derived from grounded theory and linguistic conversation analysis to characterize the sample.

Results

Users report on personal experience and provide subjective recommendations. At the same time those seeking advice are encouraged to weigh the information and to decide for themselves. Some urologists contribute to the discussion and seem to have a corrective influence, but their involvement is judged diversely. As mainly lay people with different levels of knowledge are involved in the discussion, a tentative language style is frequently used. The disease itself appears to be a linguistic taboo. Besides treatment recommendations, emotional support is of major concern. Being personally affected establishes a sense of unity, which adds to the subjective value of the communication.

Conclusions

Patients readily receive information, advice and emotional support in online support groups. Knowledge of such online services is useful in ensuring good counselling for our patients.

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Authors and Affiliations

  1. Urologische Universitätsklinik Heidelberg, Im Neuenheimer Feld 110, 69120, Heidelberg, Deutschland

    J. Huber, A. Kessler, B. Hadaschik, S. Pahernik & M. Hohenfellner

  2. Institut für Medizinische Ethik und Geschichte der Medizin, Ruhr-Universität Bochum, Bochum, Deutschland

    T. Peters

  3. Sektion Psychoonkologie, Klinik für Psychosomatische und Allgemeine Klinische Medizin, Universitätsklinik Heidelberg, Heidelberg, Deutschland

    A. Ihrig

  4. Zentrum für Psychosoziale Medizin, Universitätsklinik Hamburg-Eppendorf, Hamburg, Deutschland

    C.G. Huber

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  1. J. Huber
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  2. T. Peters
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  3. A. Kessler
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  4. A. Ihrig
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  8. M. Hohenfellner
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Correspondence to J. Huber.

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Huber, J., Peters, T., Kessler, A. et al. Selbsthilfe im Onlineforum bei lokal begrenztem Prostatakarzinom. Urologe 49, 1377–1384 (2010). https://doi.org/10.1007/s00120-010-2363-z

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