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Einbindung von Betroffenen- und Angehörigenvertreter:innen in Leitlinienprozesse

  • Uta Gühne,
  • Jurand Daszkowski,
  • Manfred Desch,
  • Stefan Weinmann,
  • Steffi G. Riedel-Heller,
  • Thomas Becker,
  • Thomas Becker,
  • Jurand Daszkowski,
  • Manfred Desch,
  • Catharina Flader,
  • Sibylle Glauser,
  • Uta Gühne,
  • Werner Holtmann,
  • Leonore Julius,
  • Heike Petereit-Zipfel,
  • Reinhard Peukert,
  • Elke Prestin,
  • Franz-Josef Wagner,
  • Stefan Weinmann

摘要

Background

The participation of representatives of patients and relatives in the development of guidelines is of central importance for the quality, feasibility and acceptance of guidelines. In Germany this has not been sufficiently implemented in the discipline of psychiatry, although in practice there are many examples for the benefits of the expertise of people with psychiatric experience.

Objective

The article describes the development and a first process evaluation of a trialogical working group (AG Impuls) accompanying the guideline process. Possibilities for further development and implementation are discussed.

Methods

Description of the working process of the Impuls working group as well as the results of the satisfaction survey after 18 months and summarised content analysis.

Results

Concept: during the further development of the S3 guidelines on psychosocial therapies, the expertise of 12 experts is bundled in the Impuls working group and supported by the members of the steering group. An open discussion takes place in regular digital working meetings and face to face meetings are held once a year as part of the German Association for Psychiatry, Psychotherapy and Psychosomatics (DGPPN) congress. The results are presented to the guideline committee at the consensus conferences. Text boxes from the Impuls working group constitute an important tool.

Evaluation: the following topics were identified in connection with the participatory work: (a) exchange at eye level, broadening perspectives and contributing impulses, (b) giving a voice to experienced experts, (c) implementation requirements and possibilities and (d) limitations of the cooperation. Various preconditions and implementation requirements for long-term successful participation in guideline development were identified.

Conclusion

The Impuls working group can be used to specifically address insufficient participation in guideline processes. The structured approach could form a blueprint for other guideline processes.