[How Successful is the Participation of People with Mental Illness and Family Members in the Development of Evidence- and Consensus-Based Clinical Practice Guidelines? Results of a Survey in Psychiatry]. / Wie gelingt die Einbindung von Betroffenen- und Angehörigenvertreter:innen in die Entwicklung von evidenz- und konsensbasierten Behandlungsleitlinien? Ergebnisse einer Umfrage im Fachbereich Psychiatrie.

ABSTRACT

OBJECTIVE: The study examines how successful the participation of people with mental illness and family members is currently in the development of psychiatric guidelines. METHODS: Survey results of N=561 (Response 37%) guideline developers are analyzed. RESULTS: Involvement of affected individuals succeeds more often than that of family members (61% vs. 55%). 68% felt that this participation was central to successful guideline development. 51% perceived discrepancies between empirical evidence and experience perspective. 33-36% perceived a lack of appreciation of experience expertise, 37% an insufficient representation and 46% an inequality in consensus building. 45% did not see barriers effectively removed. CONCLUSION: There remain challenges in the participation of people with mental illness and family members. There is an increasing awareness that their participation is central.