Presentation (CTI)

OBJECTIVES: To explore the multidimensional experiences of caregiving burden among family caregivers of individuals with schizophrenia in China, with particular attention to long-term caregiving demands.
METHODS: Semi-structured interviews were conducted with primary family caregivers of community-dwelling individuals with schizophrenia and psychiatrists between June and July 2025 in Nanjing, China. Caregivers were recruited using purposive sampling during outpatient follow-up visits at a psychiatric specialty hospital, while psychiatrists were purposively selected based on their clinical experience. Interview topics included caregiving experiences, psychosocial and economic impacts, coping strategies, and support needs. Interviews were transcribed verbatim and analyzed using deductive-led thematic analysis (Braun & Clarke, 2006) in NVivo 15.
RESULTS: Twenty caregivers (mean age 60.2 years; 85% rural residents) and 6 psychiatrists (≥10 years' clinical experience) participated. Most caregivers were parents (45%) or spouses (30%) . Mean patient illness duration was 22.3 years, with 80% exceeding 10 years. Five interconnected themes emerged: (1) High-intensity caregiving and role-binding, characterized by extensive responsibility for medication supervision, behavioral management, and daily care, often in the absence of alternative caregivers; (2) Emotional complexity and chronic suppression, involving persistent vigilance, fatigue, emotional inhibition, self-blame, and affective numbing over time; (3) Future uncertainty, reflected in persistent concerns regarding relapse, economic insecurity, caregiver aging, and continuity of care; (4) Unequal access to formal support, particularly among rural and older caregivers facing geographic barriers, limited access to information, and limited service accessibility; (5) Expectation recalibration, whereby caregivers gradually shifted aspirations from recovery toward stability and basic functioning.
CONCLUSIONS: Caregiving burden in schizophrenia encompasses experiences not fully captured by existing burden assessments. These findings support incorporating broader caregiver perspectives into outcome measurement, with implications for future economic evaluations adopting a societal perspective.