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

Paolo Fusar-Poli, Andrés Estradé, Cecilia Esposito, René Rosfort, Ilaria Basdonne, Milena Mancini, Giovanni Stanghellini, Jummy Otaiku, Oluwadamilola Olanrele, Lucas Allen, Muskan Lamba, Catherine Alaso, Judy Ieri, Margret Atieno, Yvonne Oluoch , Phides Ireri, Ephraim Tembo, Innocent Zilole, Duncan Nkhoma, Noah SichoneCandy Siadibbi, Pharidah R.I.O. Sundi, Nyathi Ntokozo, Laura Fusar-Poli, Valentina Floris, Martina M. Mensi, Renato Borgatti, Stefano Damiani, Umberto Provenzani, Ilaria Bonoldi, Joaquim Radua, Kate Cooper, Jae Il Shin, Samuele Cortese, Andrea Danese, Sarah Bendall, Celso Arango, Universitätsmedizin Berlin, Mario Maj

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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.
Original languageEnglish
Pages (from-to)191-208
Number of pages18
JournalWorld Psychiatry
Volume23
Issue number2
Early online date10 May 2024
DOIs
Publication statusPublished - 30 Jun 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

ASJC Scopus subject areas

  • Psychiatry and Mental health
  • Phychiatric Mental Health

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