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Enriching a randomized controlled treatment trial for anorexia nervosa by lived experience—Chances and effects of a lived experience council in the SUSTAIN study.

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Title: Enriching a randomized controlled treatment trial for anorexia nervosa by lived experience—Chances and effects of a lived experience council in the SUSTAIN study.
Authors: Giel, Katrin Elisabeth, Bremer, Judith, Rieß‐Stumm, Susanne, Gregg, Bettina, Fritz, Anke, Klemm, Isabel, Daugelat, Melissa‐Claire, Schag, Kathrin, Herpertz, Stephan, Junne, Florian, Hofmann, Tobias, Löwe, Bernd, Martus, Peter, Paslakis, Georgios, Schmidt, Ulrike, Teufel, Martin, Voderholzer, Ulrich, von Wietersheim, Jörn, Wild, Beate, Zeeck, Almut
Source: International Journal of Eating Disorders. Jun2024, Vol. 57 Issue 6, p1300-1310. 11p.
Subjects: Research funding, Focus groups, Experience, Motivation (Psychology), Anorexia nervosa, Action research, Conceptual structures, Experiential learning
Geographic Terms: Germany
Abstract: Background: The development and advancement of treatment and care options is one priority in the field of eating disorders. The inclusion of persons with lived experience with eating disorders into clinical research could enrich and accelerate this endeavor, as they can add different perspectives on the disease and its treatment. Although lived experience perspectives are increasingly part of eating disorder research, they have not been widely or structurally implemented into clinical trials and there is limited information on the practice of participatory research, its framework and consequences. Aims: The present work outlines the participatory collaboration with a lived experience council in the randomized controlled treatment trial SUSTAIN. Materials & Methods: The manuscript is a participatory publication co‐written by individuals with lived experience with anorexia nervosa and eating disorder researchers. Results: We report on motivations for this approach, our collaboration principles, structures and shared experience of working together in the trial, the potential burdens and benefits related to participation for people with lived experience. Discussion: We outline future directions and perspectives to integrate a participatory framework into clinical eating disorder research. Conclusion: The involvement of people with experiential knowledge is complex, but possible in clinical research on ED and bears huge potential for the development of more effective care. Public Significance: Incorporating perspectives of people with lived experience into a participatory framework of mental health research bears huge potential on a societal level. This includes more relevant research topics and designs, more tailored and effective interventions, and facilitated implementation, as well as dissemination, higher credibility, destigmatization of mental illness, and patient empowerment. Participatory clinical research, however, needs structural anchorage within science and society. [ABSTRACT FROM AUTHOR]
Copyright of International Journal of Eating Disorders is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: Enriching a randomized controlled treatment trial for anorexia nervosa by lived experience—Chances and effects of a lived experience council in the SUSTAIN study.
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  Data: <searchLink fieldCode="AR" term="%22Giel%2C+Katrin+Elisabeth%22">Giel, Katrin Elisabeth</searchLink><br /><searchLink fieldCode="AR" term="%22Bremer%2C+Judith%22">Bremer, Judith</searchLink><br /><searchLink fieldCode="AR" term="%22Rieß‐Stumm%2C+Susanne%22">Rieß‐Stumm, Susanne</searchLink><br /><searchLink fieldCode="AR" term="%22Gregg%2C+Bettina%22">Gregg, Bettina</searchLink><br /><searchLink fieldCode="AR" term="%22Fritz%2C+Anke%22">Fritz, Anke</searchLink><br /><searchLink fieldCode="AR" term="%22Klemm%2C+Isabel%22">Klemm, Isabel</searchLink><br /><searchLink fieldCode="AR" term="%22Daugelat%2C+Melissa‐Claire%22">Daugelat, Melissa‐Claire</searchLink><br /><searchLink fieldCode="AR" term="%22Schag%2C+Kathrin%22">Schag, Kathrin</searchLink><br /><searchLink fieldCode="AR" term="%22Herpertz%2C+Stephan%22">Herpertz, Stephan</searchLink><br /><searchLink fieldCode="AR" term="%22Junne%2C+Florian%22">Junne, Florian</searchLink><br /><searchLink fieldCode="AR" term="%22Hofmann%2C+Tobias%22">Hofmann, Tobias</searchLink><br /><searchLink fieldCode="AR" term="%22Löwe%2C+Bernd%22">Löwe, Bernd</searchLink><br /><searchLink fieldCode="AR" term="%22Martus%2C+Peter%22">Martus, Peter</searchLink><br /><searchLink fieldCode="AR" term="%22Paslakis%2C+Georgios%22">Paslakis, Georgios</searchLink><br /><searchLink fieldCode="AR" term="%22Schmidt%2C+Ulrike%22">Schmidt, Ulrike</searchLink><br /><searchLink fieldCode="AR" term="%22Teufel%2C+Martin%22">Teufel, Martin</searchLink><br /><searchLink fieldCode="AR" term="%22Voderholzer%2C+Ulrich%22">Voderholzer, Ulrich</searchLink><br /><searchLink fieldCode="AR" term="%22von+Wietersheim%2C+Jörn%22">von Wietersheim, Jörn</searchLink><br /><searchLink fieldCode="AR" term="%22Wild%2C+Beate%22">Wild, Beate</searchLink><br /><searchLink fieldCode="AR" term="%22Zeeck%2C+Almut%22">Zeeck, Almut</searchLink>
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  Data: <searchLink fieldCode="JN" term="%22International+Journal+of+Eating+Disorders%22">International Journal of Eating Disorders</searchLink>. Jun2024, Vol. 57 Issue 6, p1300-1310. 11p.
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  Data: Background: The development and advancement of treatment and care options is one priority in the field of eating disorders. The inclusion of persons with lived experience with eating disorders into clinical research could enrich and accelerate this endeavor, as they can add different perspectives on the disease and its treatment. Although lived experience perspectives are increasingly part of eating disorder research, they have not been widely or structurally implemented into clinical trials and there is limited information on the practice of participatory research, its framework and consequences. Aims: The present work outlines the participatory collaboration with a lived experience council in the randomized controlled treatment trial SUSTAIN. Materials & Methods: The manuscript is a participatory publication co‐written by individuals with lived experience with anorexia nervosa and eating disorder researchers. Results: We report on motivations for this approach, our collaboration principles, structures and shared experience of working together in the trial, the potential burdens and benefits related to participation for people with lived experience. Discussion: We outline future directions and perspectives to integrate a participatory framework into clinical eating disorder research. Conclusion: The involvement of people with experiential knowledge is complex, but possible in clinical research on ED and bears huge potential for the development of more effective care. Public Significance: Incorporating perspectives of people with lived experience into a participatory framework of mental health research bears huge potential on a societal level. This includes more relevant research topics and designs, more tailored and effective interventions, and facilitated implementation, as well as dissemination, higher credibility, destigmatization of mental illness, and patient empowerment. Participatory clinical research, however, needs structural anchorage within science and society. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of International Journal of Eating Disorders is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=pbh&AN=177717564
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        Value: 10.1002/eat.24050
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        Text: English
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