Supporting children with mental disorders accounts for 50% of a family’s monthly income

The data are from a project linked to the Center for Research and Innovation in Mental Health, one of the Applied Research Centers funded by FAPESP. The study was conducted with 1,158 caregivers of young people aged 14 to 23.

Agência FAPESP* – A study of 1,158 caregivers of young people with mental health conditions, 94.2% of whom were mothers, revealed that the average indirect cost of caregiving was equivalent to half of their monthly income. This finding applies to participants from all socioeconomic levels.

These costs include the impact on caregivers’ productivity, hours dedicated to caring for their child, health effects, and out-of-pocket expenses, such as transportation costs to access healthcare services.

The researchers analyzed the indirect economic impact faced by caregivers of young people aged 14 to 23.

The participants are part of the Brazilian High-Risk Cohort for Mental Health Conditions. The project, also known as “Connecting Minds of the Future,” is affiliated with the Center for Research and Innovation in Mental Health (CISM). The CISM is one of FAPESP’s Applied Research Centers (ARCs), headquartered at the University of São Paulo (USP) in partnership with the Federal University of São Paulo (UNIFESP) and the Federal University of Rio Grande do Sul (UFRGS).

The results were published in the scientific journal Value in Health.

The study revealed that nearly 40% of families (458) reported indirect economic impacts attributed to the mental health condition of the young person they care for. Personal expenses and the use of health services by parents/caregivers were assessed, excluding the costs of services used by their children. Losses in productivity and household tasks among caregivers were also considered over a six-month period.

Carolina Ziebold, who holds a Ph.D. in psychiatry from UNIFESP and is the first author of the study, points out that one of the novel aspects is the measurement of the cost of care associated with common mental disorders, such as anxiety, depression, and behavioral disorders.

“The limited existing literature tends to focus on autism spectrum disorder [ASD] or other conditions of greater complexity and impact on families. Our study demonstrates that, even in cases of more common disorders, caregivers – especially mothers – face an impact on their occupational development, their own health, and their finances equivalent to half their salaries,” she notes.

For Ziebold, the research highlights a frequently overlooked aspect: the significant financial burden placed on families of young people with mental health conditions. “The costs go far beyond direct medical care, affecting work capacity, domestic balance, and personal finances, regardless of social class,” the researcher notes.

In light of the results, the researchers point to the need for policies that offer financial or logistical support to caregivers, especially women, who are most affected. Some suggestions include creating care programs that consider families as a whole and developing strategies that alleviate the economic burden and improve the well-being of caregivers and young people.

* With information from Mainary Nascimento of the CISM