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The lived experience of mental disorders in adolescents: a bottom‐up review co‐designed, co‐conducted and co‐written by experts by experience and academics

The lived experience of mental disorders in adolescents: a bottom‐up review co‐designed, co‐conducted and co‐written by experts by experience and academics
The lived experience of mental disorders in adolescents: a bottom‐up review co‐designed, co‐conducted and co‐written by experts by experience and academics

We provide here the first bottom-up review of the lived experience of mental disorders in adolescents co-designed, co-conducted and co-written by experts by experience and academics. We screened first-person accounts within and outside the medical field, and discussed them in collaborative workshops involving numerous experts by experience – representing different genders, ethnic and cultural backgrounds, and continents – and their family members and carers. Subsequently, the material was enriched by phenomenologically informed perspectives and shared with all collaborators. The inner subjective experience of adolescents is described for mood disorders, psychotic disorders, attention-deficit/hyperactivity disorder, autism spectrum disorders, anxiety disorders, eating disorders, externalizing disorders, and self-harm behaviors. The recollection of individuals’ past histories also indexes the prodromal (often transdiagnostic) features predating the psychiatric diagnosis. The experience of adolescents with mental disorders in the wider society is described with respect to their family, their school and peers, and the social and cultural context. Furthermore, their lived experience of mental health care is described with respect to receiving a diagnosis of mental disorder, accessing mental health support, receiving psychopharmacological treatment, receiving psychotherapy, experiencing peer support and mental health activism, and achieving recovery. These findings can impact clinical practice, research, and the whole society. We hope that this co-designed, co-conducted and co-written journey can help us maintain our commitment to protecting adolescents’ fragile mental health, and can help them develop into a healthy, fulfilling and contributing adult life.

Adolescents, anxiety disorders, attention-deficit/hyperactivity disorder, autism spectrum disorders, eating disorders, externalizing disorders, first-person accounts, lived experience, mental health care, mood disorders, psychotic disorders, recovery, self-harm behaviors
2051-5545
191-208
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Estradé, Andrés
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Esposito, Cecilia M.
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Rosfort, René
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Basadonne, Ilaria
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Mancini, Milena
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Stanghellini, Giovanni
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Siadibbi, Candy
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Ntokozo, Nyathi
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Fusar‐Poli, Paolo
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Estradé, Andrés
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Esposito, Cecilia M.
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Rosfort, René
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Basadonne, Ilaria
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Mancini, Milena
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Olanrele, Oluwadamilola
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Allen, Lucas
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Lamba, Muskan
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Ntokozo, Nyathi
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Cooper, Kate
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Shin, Jae il
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Cortese, Samuele
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Danese, Andrea
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Arango, Celso
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Correll, Christoph U.
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Maj, Mario
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Fusar‐Poli, Paolo, Estradé, Andrés, Esposito, Cecilia M., Rosfort, René, Basadonne, Ilaria, Mancini, Milena, Stanghellini, Giovanni, Otaiku, Jummy, Olanrele, Oluwadamilola, Allen, Lucas, Lamba, Muskan, Alaso, Catherine, Ieri, Judy, Atieno, Margret, Oluoch, Yvonne, Ireri, Phides, Tembo, Ephraim, Phiri, Innocent Z., Nkhoma, Duncan, Sichone, Noah, Siadibbi, Candy, Sundi, Pharidah R.I.O., Ntokozo, Nyathi, Fusar‐Poli, Laura, Floris, Valentina, Mensi, Martina M., Borgatti, Renato, Damiani, Stefano, Provenzani, Umberto, Brondino, Natascia, Bonoldi, Ilaria, Radua, Joaquim, Cooper, Kate, Shin, Jae il, Cortese, Samuele, Danese, Andrea, Bendall, Sarah, Arango, Celso, Correll, Christoph U. and Maj, Mario (2024) The lived experience of mental disorders in adolescents: a bottom‐up review co‐designed, co‐conducted and co‐written by experts by experience and academics. World Psychiatry, 23 (2), 191-208. (doi:10.1002/wps.21189).

Record type: Article

Abstract

We provide here the first bottom-up review of the lived experience of mental disorders in adolescents co-designed, co-conducted and co-written by experts by experience and academics. We screened first-person accounts within and outside the medical field, and discussed them in collaborative workshops involving numerous experts by experience – representing different genders, ethnic and cultural backgrounds, and continents – and their family members and carers. Subsequently, the material was enriched by phenomenologically informed perspectives and shared with all collaborators. The inner subjective experience of adolescents is described for mood disorders, psychotic disorders, attention-deficit/hyperactivity disorder, autism spectrum disorders, anxiety disorders, eating disorders, externalizing disorders, and self-harm behaviors. The recollection of individuals’ past histories also indexes the prodromal (often transdiagnostic) features predating the psychiatric diagnosis. The experience of adolescents with mental disorders in the wider society is described with respect to their family, their school and peers, and the social and cultural context. Furthermore, their lived experience of mental health care is described with respect to receiving a diagnosis of mental disorder, accessing mental health support, receiving psychopharmacological treatment, receiving psychotherapy, experiencing peer support and mental health activism, and achieving recovery. These findings can impact clinical practice, research, and the whole society. We hope that this co-designed, co-conducted and co-written journey can help us maintain our commitment to protecting adolescents’ fragile mental health, and can help them develop into a healthy, fulfilling and contributing adult life.

Text
Manuscript_FULL_19.12.2023 - Accepted Manuscript
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e-pub ahead of print date: 10 May 2024
Published date: June 2024
Keywords: Adolescents, anxiety disorders, attention-deficit/hyperactivity disorder, autism spectrum disorders, eating disorders, externalizing disorders, first-person accounts, lived experience, mental health care, mood disorders, psychotic disorders, recovery, self-harm behaviors

Identifiers

Local EPrints ID: 491034
URI: http://eprints.soton.ac.uk/id/eprint/491034
ISSN: 2051-5545
PURE UUID: 5f6d0dec-8bfb-4713-b7b8-d78bae1a7e35
ORCID for Samuele Cortese: ORCID iD orcid.org/0000-0001-5877-8075

Catalogue record

Date deposited: 11 Jun 2024 16:42
Last modified: 15 Jun 2024 01:47

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Contributors

Author: Paolo Fusar‐Poli
Author: Andrés Estradé
Author: Cecilia M. Esposito
Author: René Rosfort
Author: Ilaria Basadonne
Author: Milena Mancini
Author: Giovanni Stanghellini
Author: Jummy Otaiku
Author: Oluwadamilola Olanrele
Author: Lucas Allen
Author: Muskan Lamba
Author: Catherine Alaso
Author: Judy Ieri
Author: Margret Atieno
Author: Yvonne Oluoch
Author: Phides Ireri
Author: Ephraim Tembo
Author: Innocent Z. Phiri
Author: Duncan Nkhoma
Author: Noah Sichone
Author: Candy Siadibbi
Author: Pharidah R.I.O. Sundi
Author: Nyathi Ntokozo
Author: Laura Fusar‐Poli
Author: Valentina Floris
Author: Martina M. Mensi
Author: Renato Borgatti
Author: Stefano Damiani
Author: Umberto Provenzani
Author: Natascia Brondino
Author: Ilaria Bonoldi
Author: Joaquim Radua
Author: Kate Cooper
Author: Jae il Shin
Author: Samuele Cortese ORCID iD
Author: Andrea Danese
Author: Sarah Bendall
Author: Celso Arango
Author: Christoph U. Correll
Author: Mario Maj

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