BACKGROUND: Severe mental illness affects not only individuals with the illness but also their families. Informal caregivers frequently experience substantial emotional distress, as well as social and relational challenges, compromising their well-being and potentially the continuity and quality of care. This review synthesized qualitative evidence on caregivers' experiences of burden in the context of severe mental illness - focusing on emotional distress, role disruption, and social isolation. METHODS: For this systematic review, a systematic search of PubMed, CINAHL, and PsycInfo was conducted between February and March 2024 and updated in June 2025. The studies included relatives of individuals with schizophrenia, bipolar disorder, major depressive disorder, or severe personality disorders. Data extraction and thematic synthesis were conducted independently by two authors, and study credibility was evaluated using CASP and GRADE-CERQual. RESULTS: 14 qualitative studies involving 363 adult informal caregivers were included. Four themes emerged: (1) adaptation to a changing everyday life, (2) uncertainty and conflicting emotions, (3) inadequate support from family and healthcare systems, and (4) neglect of personal needs. Caregivers reported unpredictability, emotional strain, social isolation, and financial hardship, consistently experiencing stress, grief, and reduced quality of life across contexts. CONCLUSION: This review highlights the significant burden faced by caregivers and emphasizes the need for their systematic inclusion and targeted psychosocial support in treatment (to reduce emotional distress and social challenges). Future research should focus on interventions that reduce burden and enhance resilience.
Jacobsen et al. (Thu,) studied this question.