Violin Irene Ninef, Ah Yusuf, Rizki Fitryasari, Moses Glorino Rumambo Pandin
Family caregiving in schizophrenia involves complex experiences of burden, stigma, changing responsibilities, and adaptive responses. Findings provide an interpretive understanding of caregiver experiences within the contexts represented in the included studies and highlight the need for further research, particularly from underrepresented regions and longitudinal designs.
AIM(S): To synthesise qualitative evidence on family caregiving experiences in schizophrenia, focusing on burden, stigma, family role changes, coping and meaning-making within the contexts represented in the included studies.
DESIGN: Qualitative systematic review and thematic synthesis informed by an interpretivist perspective.
METHODS: The review followed PRISMA 2020 guidelines. Qualitative findings were synthesised through coding, development of descriptive themes, and generation of analytical themes. Methodological quality was assessed using the CASP qualitative checklist, and confidence in synthesized findings was evaluated using GRADE-CERQual.
DATA SOURCES: Five databases (PubMed, Scopus, PsycINFO, CINAHL, and Web of Science) were searched from inception to January 2025. Eleven qualitative studies were included.
RESULTS: Four analytical themes were identified: psychosocial burden, stigma and identity disruption, family role restructuring, and coping and meaning-making adaptation. Caregivers described emotional distress, social limitations, financial challenges, and difficulties accessing support. Stigma affected caregivers' emotional experiences, family interactions, and social participation. Changes in caregiving responsibilities and daily routines were also reported. Adaptive responses, including acceptance, spirituality, social support, and cognitive reframing, were described across several contexts. Thematic synthesis inductively generated an integrated interpretation of interconnected patterns between burden, stigma, role changes, and adaptation; these represent analytical interpretations rather than temporal or causal relationships. CERQual assessments indicated varying confidence across themes.
CONCLUSION: Family caregiving in schizophrenia involves complex experiences of burden, stigma, changing responsibilities, and adaptive responses. Findings provide an interpretive understanding of caregiver experiences within the contexts represented in the included studies and highlight the need for further research, particularly from underrepresented regions and longitudinal designs.
IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The findings support family-centred and stigma-sensitive nursing approaches, including caregiver assessment and psychosocial support planning. Specific nursing interventions require further evaluation through intervention research.