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Experiences of Persons with Schizophrenia Participating in a Recovery-Oriented NGO Project in Brazil

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Abstract

This study aimed to understand the process of recovery from the perspective of people with schizophrenia and caregivers participating in a cultural and artistic project of a Non-Governmental Organization in São Paulo, Brazil. Five users with schizophrenia and their caregivers were interviewed by the first author, who had lived experience perspective and training in mental health research. A semi-structured interview guide was adopted (user and caregiver versions), designed to understand their knowledge, experiences, and perceptions of recovery from mental health problems. An Interpretative Phenomenological Analysis was adopted to explore how each participant interpreted their own experiences. Respondents reported that friendship and social interactions emerged as an element of change in the cultural and artistic project working groups, which workshops helped in the development of personal skills, providing motivation for everyday life. Caregivers linked such changes more directly to the project activities than users with schizophrenia. This study was the first to investigate recovery-oriented activities promoted by Non-Governmental Organizations. Our findings suggest that such activities might be a valuable tool to promote recovery in contexts where this process is not yet officially incorporated in mental health policy.

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Data Availability

The data sets generated and/or analyzed during the current study are available from the corresponding author on reasonable request.

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Acknowledgements

We would like to express our gratitude to the participating users and theirs respective caregivers.

Funding

This study was financed by the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior—Brasil (CAPES)—Finance Code 001, and also in part by the Fundação de Amparo à Pesquisa do Estado de São Paulo—Process number 2022/06698-9.

Author information

Authors and Affiliations

  1. Interdisciplinary Laboratory of Clinical Neurosciences (LiNC), Department of Psychiatry, Escola Paulista de Medicina, Universidade Federal de São Paulo, Rua Major Maragliano, 241, São Paulo, SP, Brazil

    José Alberto Orsi, Rodrigo Affonseca Bressan & Ary Gadelha

  2. Schizophrenia Program (PROESQ), Department of Psychiatry, Escola Paulista de Medicina, Universidade Federal de São Paulo, Rua Major Maragliano, 241, São Paulo, SP, Brazil

    José Alberto Orsi, Cecília Cruz Villares & Ary Gadelha

  3. Brazilian Schizophrenia Association (ABRE), São Paulo, SP, Brazil

    José Alberto Orsi

  4. Department of Public Health, Universidade Federal de Santa Catarina (UFSC), Florianópolis, Brazil

    Walter Ferreira de Oliveira

  5. Department of Psychology, Universidade Federal de São João del-Rei (UFSJ), São João del-Rei, Brazil

    Mário César Rezende Andrade

  6. Institute of Psychiatry, Psychology and Neuroscience – King’s College London, London, UK

    Norha Vera San Juan & Rodrigo Affonseca Bressan

  7. Rapid Research Evaluation and Appraisal Lab (RREAL), University College London, London, UK

    Norha Vera San Juan

  8. NOOS Institute, São Paulo, SP, Brazil

    Cecília Cruz Villares

Authors
  1. José Alberto Orsi
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  2. Walter Ferreira de Oliveira
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  3. Mário César Rezende Andrade
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  4. Norha Vera San Juan
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  5. Cecília Cruz Villares
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  6. Rodrigo Affonseca Bressan
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  7. Ary Gadelha
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Contributions

JAO designed, conducted the study and collaborated with data analysis and manuscript preparation. MCRA and WFO collaborated with the analysis, data interpretation and preparation of the whole manuscript. NVSJ developed and provided the main semi-structured interview guide of this study and collaborated with the data interpretation. CCV collaborated on the study design and the data interpretation. RAB collaborated on the study conduct and data interpretation. AG collaborated on the study design, data analysis and supervised the manuscript preparation.

Corresponding author

Correspondence to José Alberto Orsi.

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Conflict of interests

RAB received personal fees from Sanofi, Ache, from institutional grants, personal fees and non-financial support from Janssen, outside the submitted work. Also received grants from the European Research Council, Medical Research Council (UK) and Cyted—Programa Iberoamericano de Ciencia y Tecnología para el Desarrollo, and grants from CNPq, FAPESP and CAPES (Brazil). The other authors declare that they have no conflict of interest.

Ethical Approval

This study was approved by the Research Ethics Committee of UNIFESP, in accordance with Resolution CNS 466/2012, and registered at Plataforma Brasil, CAAE N. 2,394,928 (year 2019).

Consent to Participate

Consent to Participate Informed consent was obtained from all individual participants included in the study.

Consent to Publish

All participants provided informed consent to publish the images used in the photovoice project.

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Orsi, J.A., de Oliveira, W.F., Andrade, M.C.R. et al. Experiences of Persons with Schizophrenia Participating in a Recovery-Oriented NGO Project in Brazil. J. Psychosoc. Rehabil. Ment. Health (2024). https://doi.org/10.1007/s40737-024-00394-3

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