Needs of people with psychosis and their caregivers: «In their own voice»

Guillermo Lahera; Jordi Cid; Ana Gonzalez-Pinto; Ana Cabrera; Celeste Mariner; Eduard Vieta; Celso Arango; Benedicto Crespo-Facorro

doi:10.1016/j.rpsm.2019.11.002

Needs of people with psychosis and their caregivers: «In their own voice»

Rev Psiquiatr Salud Ment (Engl Ed). 2020 Apr-Jun;13(2):80-89. doi: 10.1016/j.rpsm.2019.11.002. Epub 2020 Jan 11.

[Article in English, Spanish]

Authors

Guillermo Lahera¹, Jordi Cid², Ana Gonzalez-Pinto³, Ana Cabrera⁴, Celeste Mariner⁵, Eduard Vieta⁶, Celso Arango⁷, Benedicto Crespo-Facorro⁸

Affiliations

¹ Universidad de Alcalá, IRyCIS, CIBERSAM, Alcalá de Henares, Madrid, España. Electronic address: guillermo.lahera@uah.es.
² Institut d'Assistència Sanitària de Girona, Salt, Girona, España.
³ Hospital Universitario Araba, BIOARABA, Universidad del País Vasco, CIBERSAM, Vitoria-Gasteiz, España.
⁴ Asociación Madrileña de Amigos y Familiares de Personas con Esquizofrenia, Madrid, España.
⁵ Confederación Salud Mental España, Madrid, España.
⁶ Hospital Clínic, Universidad de Barcelona, Institut d'Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS), CIBERSAM, Barcelona, España.
⁷ Hospital General Universitario Gregorio Marañón, Universidad Complutense de Madrid, CIBERSAM, Madrid, España.
⁸ Hospital Universitario Virgen del Rocío, Instituto de Biomedicina de Sevilla (IBIS), Universidad de Sevilla, CIBERSAM, Sevilla, España.

PMID: 31937434
DOI: 10.1016/j.rpsm.2019.11.002

Abstract

Introduction: Improvement in mental health care services is going through a greater involvement 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 9questions 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 (friendships, 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 participants 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.

Conclusions: Designers of mental health care services should consider the importance given by people diagnosed with psychosis to emotional needs, perception of freedom to make choices and early intervention.

Keywords: Caregivers; Cuidadores; Díada paciente/cuidador; Esquizofrenia; Necesidades; Needs; Patient/caregiver dyad; Psicosis; Psychosis; Schizophrenia.