Towards an informed research agenda for the field of personality disorders by experts with lived and living experience and researchers

30 experts with lived experience – clients, relatives, significant others - from 10 European countries; Babette Renneberg; Joost Hutsebaut; Ann Berens; Chiara De Panfilis; Katja Bertsch; Andres Kaera; Ueli Kramer; Christian Schmahl; Michaela Swales; Svenja Taubner; Mariana Mendoza Alvarez; Julia Sieg

doi:10.1186/s40479-024-00257-0

Towards an informed research agenda for the field of personality disorders by experts with lived and living experience and researchers

30 experts with lived experience – clients, relatives, significant others - from 10 European countries
, Babette Renneberg^*
, Joost Hutsebaut
, Ann Berens
, Chiara De Panfilis
, Katja Bertsch
, Andres Kaera
, Ueli Kramer
, Christian Schmahl
, Michaela Swales
, Svenja Taubner
, Mariana Mendoza Alvarez
, Julia Sieg

^*Corresponding author for this work

Kanta-Häme Central Hospital Hämeenlinna HVA

Research output: Contribution to journal › Article › Scientific › peer-review

6 Citations (Scopus)

12 Downloads (Pure)

Abstract

Background: We describe a collection of themes for a research agenda for personality disorders that was originally formulated for the ESSPD Borderline Congress in 2022. Methods: Experts with lived and living experience (EE), researchers and clinicians met virtually, exchanged ideas and discussed research topics for the field of personality disorders. The experts - patients, relatives, significant others - named the topics they thought most relevant for further research in the field. These topics were presented at the ESPPD conference in October 2022. Results: The five top themes were: 1. Prevention, early detection and intervention, 2. Recovery beyond symptom improvement, 3. Involvement of relatives in treatment, 4. Gender dysphoria, and 5. Stigma. Conclusions: In general, the topics reflect current issues and changes in societal values. Overarching aims of research on these topics are the improvement of social participation and integration in society, better dissemination of research, and better information of the general public and political stakeholders.

Original language	English
Article number	14
Journal	Borderline Personality Disorder and Emotion Dysregulation
Volume	11
Issue number	1
DOIs	https://doi.org/10.1186/s40479-024-00257-0
Publication status	Published - 2024
Publication type	A1 Journal article-refereed

Funding

An exemplary approach in this field is established by the James Lind Alliance (JLA https://www.jla.nihr.ac.uk/ ) Priority Setting Partnerships in Oxford, UK. The JLA was established in 2004 and is funded by the UK Medical Research Council and National Institute for Health Research (NIHR). This non-profit initiative brings together patients, carers and clinicians to identify and prioritize research questions that should be further explored and funded for a given disease or disorder. The aim of such initiatives (see also e.g., []) is to integrate patients and relatives as co-creators in all stages of the research process. Ethical and legal reasons form the base for this participatory process which also ensures that research becomes more relevant and more credible for those affected by the disease or the disorder.

Funders
Medical Research Council
National Institute for Health and Care Research

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

Keywords

Experts with lived experience
Personality disorder
Public and patient involvement

Publication forum classification

Publication forum level 1

ASJC Scopus subject areas

Clinical Psychology
Psychiatry and Mental health
Biological Psychiatry

Access to Document

10.1186/s40479-024-00257-0Licence: CC BY

s40479-024-00257-0Final published version, 999 KBLicence: CC BY

https://urn.fi/URN:NBN:fi:tuni-202408128062Licence: CC BY

Cite this

30 experts with lived experience – clients, relatives, significant others - from 10 European countries, Renneberg, B., Hutsebaut, J., Berens, A., De Panfilis, C., Bertsch, K., Kaera, A., Kramer, U., Schmahl, C., Swales, M., Taubner, S., Alvarez, M. M., & Sieg, J. (2024). Towards an informed research agenda for the field of personality disorders by experts with lived and living experience and researchers. Borderline Personality Disorder and Emotion Dysregulation, 11(1), Article 14. https://doi.org/10.1186/s40479-024-00257-0

30 experts with lived experience – clients, relatives, significant others - from 10 European countries ; Renneberg, Babette ; Hutsebaut, Joost et al. / Towards an informed research agenda for the field of personality disorders by experts with lived and living experience and researchers. In: Borderline Personality Disorder and Emotion Dysregulation. 2024 ; Vol. 11, No. 1.

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abstract = "Background: We describe a collection of themes for a research agenda for personality disorders that was originally formulated for the ESSPD Borderline Congress in 2022. Methods: Experts with lived and living experience (EE), researchers and clinicians met virtually, exchanged ideas and discussed research topics for the field of personality disorders. The experts - patients, relatives, significant others - named the topics they thought most relevant for further research in the field. These topics were presented at the ESPPD conference in October 2022. Results: The five top themes were: 1. Prevention, early detection and intervention, 2. Recovery beyond symptom improvement, 3. Involvement of relatives in treatment, 4. Gender dysphoria, and 5. Stigma. Conclusions: In general, the topics reflect current issues and changes in societal values. Overarching aims of research on these topics are the improvement of social participation and integration in society, better dissemination of research, and better information of the general public and political stakeholders.",

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30 experts with lived experience – clients, relatives, significant others - from 10 European countries, Renneberg, B, Hutsebaut, J, Berens, A, De Panfilis, C, Bertsch, K, Kaera, A, Kramer, U, Schmahl, C, Swales, M, Taubner, S, Alvarez, MM & Sieg, J 2024, 'Towards an informed research agenda for the field of personality disorders by experts with lived and living experience and researchers', Borderline Personality Disorder and Emotion Dysregulation, vol. 11, no. 1, 14. https://doi.org/10.1186/s40479-024-00257-0

Towards an informed research agenda for the field of personality disorders by experts with lived and living experience and researchers. / 30 experts with lived experience – clients, relatives, significant others - from 10 European countries; Renneberg, Babette; Hutsebaut, Joost et al.
In: Borderline Personality Disorder and Emotion Dysregulation, Vol. 11, No. 1, 14, 2024.

Research output: Contribution to journal › Article › Scientific › peer-review

TY - JOUR

T1 - Towards an informed research agenda for the field of personality disorders by experts with lived and living experience and researchers

AU - 30 experts with lived experience – clients, relatives, significant others - from 10 European countries

AU - Renneberg, Babette

AU - Hutsebaut, Joost

AU - Berens, Ann

AU - De Panfilis, Chiara

AU - Bertsch, Katja

AU - Kaera, Andres

AU - Kramer, Ueli

AU - Schmahl, Christian

AU - Swales, Michaela

AU - Taubner, Svenja

AU - Alvarez, Mariana Mendoza

AU - Sieg, Julia

PY - 2024

Y1 - 2024

N2 - Background: We describe a collection of themes for a research agenda for personality disorders that was originally formulated for the ESSPD Borderline Congress in 2022. Methods: Experts with lived and living experience (EE), researchers and clinicians met virtually, exchanged ideas and discussed research topics for the field of personality disorders. The experts - patients, relatives, significant others - named the topics they thought most relevant for further research in the field. These topics were presented at the ESPPD conference in October 2022. Results: The five top themes were: 1. Prevention, early detection and intervention, 2. Recovery beyond symptom improvement, 3. Involvement of relatives in treatment, 4. Gender dysphoria, and 5. Stigma. Conclusions: In general, the topics reflect current issues and changes in societal values. Overarching aims of research on these topics are the improvement of social participation and integration in society, better dissemination of research, and better information of the general public and political stakeholders.

AB - Background: We describe a collection of themes for a research agenda for personality disorders that was originally formulated for the ESSPD Borderline Congress in 2022. Methods: Experts with lived and living experience (EE), researchers and clinicians met virtually, exchanged ideas and discussed research topics for the field of personality disorders. The experts - patients, relatives, significant others - named the topics they thought most relevant for further research in the field. These topics were presented at the ESPPD conference in October 2022. Results: The five top themes were: 1. Prevention, early detection and intervention, 2. Recovery beyond symptom improvement, 3. Involvement of relatives in treatment, 4. Gender dysphoria, and 5. Stigma. Conclusions: In general, the topics reflect current issues and changes in societal values. Overarching aims of research on these topics are the improvement of social participation and integration in society, better dissemination of research, and better information of the general public and political stakeholders.

KW - Experts with lived experience

KW - Personality disorder

KW - Public and patient involvement

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DO - 10.1186/s40479-024-00257-0

M3 - Article

AN - SCOPUS:85197789345

SN - 2051-6673

VL - 11

JO - Borderline Personality Disorder and Emotion Dysregulation

JF - Borderline Personality Disorder and Emotion Dysregulation

IS - 1

M1 - 14

ER -

30 experts with lived experience – clients, relatives, significant others - from 10 European countries, Renneberg B, Hutsebaut J, Berens A, De Panfilis C, Bertsch K et al. Towards an informed research agenda for the field of personality disorders by experts with lived and living experience and researchers. Borderline Personality Disorder and Emotion Dysregulation. 2024;11(1):14. doi: 10.1186/s40479-024-00257-0

Towards an informed research agenda for the field of personality disorders by experts with lived and living experience and researchers

Abstract

Funding

UN SDGs

Keywords

Publication forum classification

ASJC Scopus subject areas

Access to Document

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Cite this