Rev Psiquiatr Salud Ment (Barc.). 2020;13(2):80---89 www.elsevier.es/saludmental ORIGINAL ARTICLE Needs of people with psychosis and their caregivers: ‘‘In their own voice’’  Guillermo Lahera a,* , Jordi Cid b , Ana Gonzalez-Pinto c , Ana Cabrera d , Celeste Mariner e , Eduard Vieta f , Celso Arango g , Benedicto Crespo-Facorro h a Universidad de Alcalá, IRyCIS, CIBERSAM, Alcalá de Henares, Madrid, Spain b Institut d’Assistència Sanitària de Girona, Salt, Girona, Spain c Hospital Universitario Araba, BIOARABA, Universidad del País Vasco, CIBERSAM, Vitoria-Gasteiz, Spain d Asociación Madrile˜ na de Amigos y Familiares de Personas con Esquizofrenia, Madrid, Spain e Confederación Salud Mental Espa˜ na, Madrid, Spain f Hospital Clínic, Universidad de Barcelona, Institut d’Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS), CIBERSAM, Barcelona, Spain g Hospital General Universitario Gregorio Mara˜ nón, Universidad Complutense de Madrid, CIBERSAM, Madrid, Spain h Hospital Universitario Virgen del Rocío, Instituto de Biomedicina de Sevilla (IBIS), Universidad de Sevilla, CIBERSAM, Sevilla, Spain Received 18 June 2019; accepted 13 November 2019 Available online 28 July 2020 KEYWORDS Psychosis; Schizophrenia; Needs; Caregivers; Patient/caregiver dyad Abstract Introduction: Improvement in mental health care services is going through a greater involve- ment of people with mental disorders and their families. Our aim was to directly ask the opinion of people with psychosis and their caregivers about their needs and preference for treatment. Methods: The authors designed an anonymous survey containing 9 questions about their needs or suggestions on different areas such as personal and social dimensions of the illness, medical and psychotherapeutic treatment, psychosocial rehabilitation or help received from professionals. A pilot study was done to ensure the adequacy and intelligibility of the form. The final survey consisted of 5.205 completed surveys were collected, corresponding to 2.840 people diagnosed with psychotic disorder (including schizophrenia) and 1.341 caregivers, from all over Spain. Results: The most important need as assessed by participants was emotional support (friend- ships, partner, family). 91% of patients indicated that this need was ‘‘quite’’ or ‘‘very important’’. Both people with schizophrenia and caregivers perceived their health to be poor (3.29 and 3.30 respectively on an ascending scale from 0 to 5). 43% of males and 39% of females reported having ‘‘little’’ or ‘‘no’’ freedom to make important life decisions. For 35% of partici- pants the psychotherapeutic treatment was instituted too late. Work was ‘‘important’’ or ‘‘very important’’ for 74% of respondents, especially for young people. The most valued anti-stigma initiative was to increase investments in schizophrenia healthcare plans.  Please cite this article as: Lahera G, Cid J, Gonzalez-Pinto A, Cabrera A, Mariner C, Vieta E, et al. Necesidades de las personas con psicosis y sus cuidadores: «en voz propia». Rev Psiquiatr Salud Ment (Barc.). 2019. https://doi.org/10.1016/j.rpsm.2019.11.002 ∗ Corresponding author. E-mail address: guillermo.lahera@uah.es (G. Lahera). 2173-5050/© 2019 SEP y SEPB. Published by Elsevier Espa˜ na, S.L.U. All rights reserved.