Aging while caregiving: a life course qualitative study of left-behind older parents caring for adult children with schizophrenia in rural China.

BACKGROUND: Older adults left behind in rural areas due to large-scale migration often serve as the primary caregivers for their adult children with schizophrenia. This study explores their long-term caregiving experiences, focusing on how caregiving responsibilities are distributed within families, how older caregivers find meaning in their role, and how sustained caregiving reshapes their expectations about aging and death. METHODS: Using a life course perspective, this study conducted semi-structured in-depth interviews with 14 older caregivers in rural Fujian Province, China. Data were analyzed by two researchers using reflexive thematic analysis. RESULTS: Three core themes were identified. First, older adults' assumption of caregiving responsibilities was the outcome of a family-level division of labor and compromise, driven by the need to sustain the household's livelihood. Second, the illness of an adult child interrupted that child's expected social development and independence, compelling older parents to continue intensive caregiving instead of stepping back from family responsibilities in later life, and they drew on fatalistic beliefs to find meaning in this disrupted trajectory. Third, declining physical capacity exacerbated concerns about losing the ability to provide care, while anxiety about care continuity after death led some caregivers to develop unconventional expectations about the order of death. CONCLUSIONS: These findings show that long-term caregiving responsibility for people with schizophrenia in rural China falls mainly on older parents, which points to the need for a sustainable community support system that fairly distributes caregiving responsibility among families, communities, and public services.