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.
Key Findings
Results
Older adults' assumption of caregiving responsibilities for adult children with schizophrenia was the outcome of a family-level division of labor and compromise driven by the need to sustain the household's livelihood.
The study used semi-structured in-depth interviews with 14 older caregivers in rural Fujian Province, China.
Large-scale rural-to-urban migration left older adults as the primary available caregivers in the household.
Caregiving roles were distributed within families as a pragmatic compromise, not solely as a matter of individual choice.
The family-level economic imperative—sustaining the household's livelihood—was a central driver of how caregiving labor was allocated.
Results
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.
Schizophrenia in an adult child disrupted normative life course trajectories, including the child's expected social development and independence.
Older parents were unable to transition out of intensive caregiving roles as would typically be expected in later life.
Caregivers drew on fatalistic beliefs to find meaning in this disrupted life trajectory.
This theme was identified through reflexive thematic analysis conducted by two researchers.
Results
Declining physical capacity in older caregivers exacerbated concerns about losing the ability to provide care, and anxiety about care continuity after death led some caregivers to develop unconventional expectations about the order of death.
As older caregivers aged, their declining physical health intensified fears about their ability to continue providing care.
Concern about what would happen to their adult child with schizophrenia after the caregiver's own death was a prominent source of anxiety.
Some caregivers developed unconventional expectations about the order of death—wishing to outlive their ill child or expressing preferences that deviated from normative expectations about dying before one's children.
This finding reflects how sustained caregiving responsibility reshaped caregivers' expectations about aging and death.
Methods
The study used a life course perspective and reflexive thematic analysis to examine long-term caregiving experiences among 14 older rural caregivers in Fujian Province, China.
Sample size was 14 older caregivers.
The study was conducted in rural Fujian Province, China.
Semi-structured in-depth interviews were the primary data collection method.
Data were analyzed by two researchers using reflexive thematic analysis.
The life course perspective was employed to examine how caregiving responsibilities, meaning-making, and expectations about aging evolved over time.
Conclusions
The study identified a need for a sustainable community support system that fairly distributes caregiving responsibility among families, communities, and public services in rural China.
Current caregiving burden falls disproportionately on older parents left behind in rural areas.
The authors argue that the existing arrangement—relying primarily on aging family members—is not sustainable.
The findings point to the need to redistribute caregiving responsibility across families, communities, and public services.
The rural context, characterized by migration-driven population depletion, limits informal support networks available to these caregivers.
What This Means
This research suggests that in rural China, elderly parents—often left behind as younger family members migrate to cities for work—bear the primary responsibility for caring for their adult children who have schizophrenia. Through in-depth interviews with 14 older caregivers in Fujian Province, the study found that this caregiving role was not simply a personal choice but rather the result of family-level negotiations shaped by economic necessity. Because younger family members needed to work outside the home to support the household financially, older parents became the default caregivers by default, often without meaningful alternatives.
This research also suggests that caring for an adult child with schizophrenia fundamentally disrupted the older parents' own expected life course. Rather than gradually stepping back from family responsibilities as they aged—as is typical—these parents found themselves locked into intensive caregiving well into old age. Many relied on fatalistic beliefs to make sense of their situation and find meaning in it. As their own health declined, they became increasingly anxious not just about their current ability to care for their child, but about what would happen after their own death. This anxiety was so profound that some caregivers expressed unconventional wishes about dying after their ill child, rather than before—a reversal of the normal expectation that parents die before their children.
This research matters because it highlights a largely invisible population facing compounding vulnerabilities: aging, geographic isolation, and the exhausting demands of long-term mental health caregiving with little systemic support. The authors suggest that current reliance on family members—particularly elderly ones—is unsustainable, and that communities and public services need to play a much greater role in supporting people with schizophrenia and their caregivers in rural settings.
Chen Y, Bao S. (2026). Aging while caregiving: a life course qualitative study of left-behind older parents caring for adult children with schizophrenia in rural China.. International journal for equity in health. https://doi.org/10.1186/s12939-026-03015-6