Research In Focus: A Weekly Digest of New Research from the NIDILRR Community

For Exceptional Caregivers of Children with Mental Health Disorders, Resources and Services May Enable Employment Success

A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).

Many parents with children with emotional and behavioral disorders provide exceptional care for their children. Exceptional caregiving is a term used to define the specialized role and responsibilities these parents provide. Statistics have shown that roughly 9% of the employees in the US are exceptional caregivers. These parents may face unique challenges in managing care of their child while also fulfilling workplace responsibilities. Past research suggests that having a child with mental health disorders may increase the likelihood of parents leaving their job, voluntarily or involuntarily, due to their care responsibilities. Some studies found that parents whose children had more severe mental health conditions, or who missed more days of school were less likely to be employed. Based on these findings, exceptional caregiving could affect the economic resources of a family, leading to stress and negative impact on mental health and well-being over time. If caregivers have access to more resources, including steady employment and support services, they may be better protected from economic loss and the resulting strain, and may be better able to care for their children.

In a recent NIDILRR-funded study, researchers wanted to examine how family resources affected the employment status of caregivers of children with mental health disorders. Researchers also wanted to know whether using specific care services and other resources would help caregivers find or keep a job.

Researchers at the Rehabilitation Research and Training Center for Pathways to Positive Futures look at data from 2,455 families who participated in the Comprehensive Community Mental Health Services for Children and their Families Program, a program funded by the Substance Abuse and Mental Health Services Administration, between 2004 and 2011. Participating caregivers were interviewed within 30 days of their children entering mental health services and again at six months. During the interviews, participants answered questions about their personal and family demographics and their employment status. They also answered questions about the severity of their child’s mental health condition and any mental health or family services or supports they had used in the previous six months, such as behavioral aides or residential services. Finally, the participants answered questions about any caregiver strain or stress they had experienced in the previous six months.

The researchers found that participants were more likely to be female, White, and the biological parents of children with mental health disorders. Most of the children in this participant sample were boys between the ages of 5-20. Over two-thirds of the families had an annual household income of less than USD 25,000.  At their first interview, 1,359 participants reported being employed and 1,099 reported not being employed.

Researchers looked data for the participantswho were employed at their first interview to see who would be more likely to retain or lose employment by the six-month follow-up interview. They found that:

  • The participants caring for an older child, who received residential services, or with higher family income were more likely to retain employment.
  • The participants who had younger children, had less education, had more children living at home, had a lower household income, or reported more caregiver strain at their first interview were more likely to be unemployed by the second interview.

Researchers also looked the participants who were unemployed at their first interview to see who would be more likely to find a job by their second interview. They found that the participants who received any form of mental health service for their children or family; were younger or had higher education; had more children; or were white were more likely to find a job. Among those who received mental health services, those who receive behavioral aide services were more likely to find a job than those who received other services.   

The authors noted that, while the use of any mental health service was associated with obtaining employment, only the use of residential services was related to retaining employment for the participants in this study. They suggested that accessing these services may have freed up time and resources for unemployed caregivers to focus on their jobs. Residential services, which include children staying outside the home for psychiatric treatment, may have allowed employed caregivers to stay at work longer without interruptions to address their child’s care.

According to the authors, the findings of the study highlight the need to support families as they care for their children with serious behavioral and emotional challenges, particularly those with limited resources. In general, families with lower household incomes were less likely to obtain and retain employment, making it even more difficult for these families to access resources. The authors suggested that behavioral health services and other family supports may increase caregiver participation in the paid labor force, thus allowing them to build up or maintain resources.  In addition, while mental health services are not necessarily designed to support caregivers in their employment, the authors suggested that perhaps they should be structured to support diverse family and caregiver needs, to reduce work disruptions for caregivers, and encourage family involvement in treatment. 

To learn more:

The Learning and Working During the Transition to Adulthood Research and Training Center includes a Family Blog Corner, which features articles and resources to help families support a young person with serious mental health conditions.

The Pathways RTC published and posted a wealth of resources for young people with serious mental health conditions and their families.

To learn about this study:

Brannan, A.M., Brennan, E.M., Sellmaier, C., Rosenzweig, J.M. Factors contributing to employment status over time for caregivers of young people with mental health disorders. (2022). Healthcare. 10, 1562. This article is available from the NARIC collection under Accession Number J91192.

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