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Caregivers Need Care Too—Especially Youth Caregivers

January 12, 2023

In a Family Partnerships article being released this month in Pediatrics (10.1542/peds.2022-057740), Rivera et al highlight a population of youth who do the caregiving in their households, a group who are seldom discussed but deserve more attention given the increase in caregiving responsibilities adolescents have had to shoulder during the ongoing COVID-19 pandemic.

Through a vignette of a youth caregiver with commentary from physicians, psychologists, and advocates, the authors highlight why there is a need to prioritize, fund, and implement a host of caregiving services.

There are 3 recommendations about youth who are caregivers that the authors make:

  1. The authors implore us to routinely ask our patients if they assist with the care of a family member with significant health care challenges—especially given their data demonstrating that a majority of providers didn’t realize their adolescent or even older school age patient was providing care for another family member. While continuing to ask about youth caregiver responsibilities, if or when mental health concerns surface during a patient-provider interaction, physicians should know what additional questions should be asked to further discern the emotional or psychological toll that the caregiver might be experiencing due to the responsibilities they have taken on. Follow-up questions would include assessing if there has been a psychological impact (e.g., depression, anxiety, etc.) on the caregiver and how well they are performing in their personal/social activities including school, extracurricular activities, and/or other responsibilities.
  2. In addition to determining if other supports (e.g., guidance counselors to identify school-based accommodations that may be helpful for the youth caregiver), the next step is to see to what extent a family may qualify for and benefit from in-home services. The authors profile several programs that provide wraparound services (e.g., family supports, counselling, in home respite care) for youth with caregiving responsibilities.
  3. Finally, the authors remind us of the need to advocate on behalf of youth caregivers. Advocacy can occur on multiple levels including a legislative one, and is a reminder of the need to raise the issue funding for wraparound services in subsequent federal spending bills. Of note, funding for well-compensated caregiving services was a part of the original Build Back Better package proposed by the White House—unfortunately, it was not a part of the final legislation that passed.

This important article highlights why there is a need to prioritize, fund, and implement a host of caregiving services when youth are asked to take on the caregiving role for another family member. Absent that, the nation will continue to do a poor job of supporting these caregivers.

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