Systematic review of burden&quality of life in caregivers of children with schizophrenia (SyREN)

Abstract

Abstract Background Schizophrenia is a chronic, disabling disorder that affects 23.6 million people worldwide, with patients often needing extensive assistance and care. Main caregivers are frequently family members who may present a reduced quality of life (QoL) due to the high-level burden of care. Literature mostly focuses on the burden caused by other mental disorders or by schizophrenia in both the adult and child population. We aim to assess the burden and QoL in caregivers of children and adolescents with schizophrenia. Methods We conducted a Systematic Review of articles published between 2013 and 2023 on MEDLINE, Scopus, Web of Science, APA PsycARTICLES, CINAHL. We included studies in which a validated instrument was used to measure the burden of caregiving and QoL for adult caregivers of children and adolescent schizophrenic patients. The results were reported following the PRISMA guidelines. Results We identified 1388 studies. We removed 610 duplicates. After screening 788 studies on title and abstract and 52 for full-text, we included one cross-sectional study in China based on the STROBE Checklist. Significant correlations between burden of care and schizophrenia severity, children’s age, period of care, education, sex, residence, and income were reported. Additionally, we screened 7 qualitative studies. Social stigma and struggle were the most frequently reported feelings, and financial burden was the most common external factor associated with a worse quality of life. Conclusions This review revealed a significant research gap in this field. This lack of focused research underscores the urgent need for targeted investigations into the experiences of caregivers of children and adolescents with schizophrenia. Addressing these knowledge gaps will improve support systems and interventions tailored to the unique needs of this population, such as disease-specific advisory, mental health services, social and financial support, and self-help groups. Key messages • We identified a research gap for burden and quality of life in informal caregivers of children with schizophrenia. Education, sex and income of caregivers relate to the burden of care. • Further research is needed to develop strategies to improve support systems and interventions tailored to the unique needs of this population.