Social Experiences and Health Needs of Patients with Severe Mental Illness and their Caregivers during the first year of the COVID-19 pandemic in Spain.

European Journal of General Practice 2024, VOL. 30, NO. 1, 2310088 https://doi.org/10.1080/13814788.2024.2310088 ORIGINAL ARTICLE Social Experiences and Health Needs of Patients with Severe Mental Illness and their Caregivers during the first year of the COVID-19 pandemic in Spain Juan Andrés Ramos-Ruiza Beatriz Ruiz-Díazb , Alejandro Pérez-Milenab , Carmen Noguera-Cuencac and Multiprofessional Teaching Unit of Family and Community Care, Jaén North - Northeast, Andalusian Healthcare Service, Jaén,Spain; El Valle’ Primary Care Center, Andalusian Healthcare Service, Andalusia, Spain‘; cDepartment of Psychology, University of Almería, Almería, Spain a b KEY MESSAGES • Quality of life and medical care for SMI people got worse in controlled confinement during COVID-19 pandemic. • Caregiving burden and isolation were common, especially in rural areas and in populations at social risk. • SMI people requested an improvement in medical care accessibility, continuity, and more social resources. ABSTRACT Background: The strict isolation measures for the population imposed by the health authorities caused a prolonged disruption of informal social support networks. Both this new social situation and the decrease in accessibility to health care have generated new needs in people with severe mental illness (SMI) and their caregivers. Objectives: This study provides insight into life experiences and health needs of a population with SMI during the first year of the COVID-19 pandemic in Spain. Methods: Qualitative design using semi-structured dyadic interviews, conducted from January through December 2022. A purposive sampling of patients with SMI and their caregivers was carried out through key informants in rural and urban localities in southern Spain. Verbatims were identified and classified by triangulation after the evaluation of the interview transcripts. The codes were defined through content analysis using the NVivo software. Results: Semi-structured dyadic interviews (21), identifying three main categories: 1. Social isolation: increased, causing greater personal vulnerability, exacerbation of psychiatric symptoms and exhaustion in caregivers. 2. Accessibility to Health Services: decreased with fewer face-to-face consultations, with difficulty in managing urgent situations and telephone attention in decompensated and disabled patients. 3. Continuity of healthcare: decreased with distrust in health professionals due to lack of communication between primary care and the hospital Conclusion: COVID-19 confinement exacerbated loneliness and worse health self-perception in SMI people. Greater formal social support was required. GPs role is key to avoiding delays in appointments and lack of coordination between primary and specialised care. Introduction General population was significantly affected during the COVID-19 pandemic due to emotional, physical and behavioural challenges and inconveniences. Mandatory home confinement harmed the mental health of the population, causing a concomitant psychiatric epidemic [1,2]. Long-term psychiatric patients ARTICLE HISTORY Received 4 June 2023 Revised 12 January 2024 Accepted 15 January 2024 KEYWORDS Mental disorders; needs assessment; involuntary confinement; COVID-19; qualitative research with pre-pandemic mental disorders have shown vulnerabilities and risk factors for the worsening of their mental health during the COVID-19 pandemic [3]. Patients with serious mental illness (SMI) should have been targeted as a high-risk population for severe forms of COVID-19, because of increased COVID-19related mortality and difficulties in family care [4]. CONTACT Alejandro Pérez-Milena 4 Ronda de los Derechos Humanos, Jaén, Spain El Valle’ Primary Care Center, Andalusian Healthcare Service, © 2024 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License (http://creativecommons.org/licenses/by-nc/4.0/), which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited. The terms on which this article has been published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent. 2 J. A. RAMOS-RUIZ ET AL. The fundamental principles and criteria governing the Spanish National Health System are public financing, universal coverage and free health care services at the time of use. General practitioners (GPs) in primary health care offer extensive accessibility and sufficient technical resources to deal with common health problems. Psychiatric specialist care includes specialised diagnosis, medical treatment and hospital care for the populations with SMI. Psychiatric care is provided to patients referred by their primary care (mandatory to be evaluated in the mental health unit) and offers medical appointments to review those populations with SMI. COVID-19 pandemic caused delays in patients seeking psychiatric care and GP appointments impoverishing the quality of their medical care [5,6]. Increased epidemiologic vigilance, better data sharing and training drills could help health systems be ready to respond to new infectious-disease outbreaks. Certainly, difficulties of the Spanish Public Health Service in caring for this population caused interruptions in their clinical follow-up and medical treatment during home confinement [7]. However, mental health is also determined by a complex interplay of individual, social and structural stresses and vulnerabilities that should be considered for future pandemics. The SMI people and their caregiver’s experience with the delay in medical care or difficulty accessing specialised care, as well as greater social isolation, are not yet sufficiently known. This study aimed to know how GPs could improve their medical care to SMI people during mandatory confinement periods in pandemics, as well as incorporate solutions to psychosocial and family needs as therapeutic resources. The results could facilitate a change to achieve more outstanding GP clinical leadership and to establish better communication with specialist care. The experiences, opinions and expectations of SMI people and their caregivers could offer an opportunity to identify possible risks and solutions to prevent the occurrence or to mitigate the impact of the current and future pandemic scenarios. Qualitative sampling plan People with Severe Mental Illness (SMI) and their informal caregivers were recruited from January to July 2022 in Andalusia (the South of Spain) both in a rural area with villages of less than 1000 inhabitants and in an urban area with 30% of the population at risk of social exclusion. SMI patients suffer from a psychotic disorder (Table 1), including the presence of positive and negative symptoms or a distorted perception of reality (due to a severely disturbed r (...truncated)