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

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.

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.

Keywords:

• Mental disorders
• needs assessment
• involuntary confinement
• COVID-19
• qualitative research

Acknowledgements

The authors gratefully acknowledge methodological and technical help from members of the Fundación para la investigación Biosanitaria de Andalucía Oriental – Alejandro Otero. Special thanks to Sofie Demets and Sofía Pérez-Martínez for their collaboration in the English translation.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

Box 1 Semi Structured Dyadic Interview Guide.

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

1. Greeting and Welcome:

   • Moderator introduction.

2. Communicative Agreement:

   • Presentation of the group of researchers and objectives of the interview.

   • Explanations about Interview setting, duration and confidentiality.

   • Signature of the informed consent by the interviewees.

3. In-depth discussion

   • Starter question:

     • “Our topic is < experiences and needs during mandatory confinement in the COVID-19 pandemic>. How have you lived the experience of confinement and what impact has it had on your health?”

   • Opening question. Allow interviewees to talk freely with each other.

     • Quality of care in each area of the health system (Primary Care, Emergency, Hospital).

     • Accessibility to health care.

     • Confidentiality and continuity of care.

     • Assessment of professionals (health and non-health).

     • Knowledge of Andalusian Health Service and user rights/duties

     • Necessary improvements in the organisation of care

   • Emerging topics (note to moderator: collect new topics that arise for subsequent interviews).

4. Interview closing

   • Brief summary of the contributions.

   • Thanks to the interviewees.

Additional information

Funding

This work was supported by Fundación Pública Andaluza Progreso y Salud (Ministry of Health of the Autonomous Government of Andalusia, Spain) under Grants number AP-0207-2019 and A2-0026-2020.