Caring for the Caregiver: Supporting Families of Youth With Special Health Care Needs

Abstract

Caregivers of youth with special health care needs (YSHCN) are a critical part of the health care team. It is important for pediatric providers to be cognizant of the burden and strain caregiving can create. This article will discuss the health, psychological, social, and financial effects of caregiving, as well as strategies to screen for caregiver strain among families of YSHCN. Caregivers of YSHCN, for example, are more likely to report poor health status and demonstrate higher rates of depression and anxiety. Numerous validated screens for caregiver strain have been developed to address the multi-faceted effects of caregiving. Finally, we will discuss strategies to alleviate caregiver strain among this vulnerable population. We will describe services pediatric providers can encourage caregivers to utilize, including financial support through Supplemental Security Income (SSI), benefits available through the Family Medical Leave Act (FMLA), and options for respite care. Addressing caregiver strain is an important aspect of maintaining a family centered approach to the care of YSHCN.