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Caregiver Training Blog

Expert Interview Series: Connie Siskowski About the Unique Needs of Youth Caregivers

Youth caregivers

How was your childhood?

For most, it was a time of learning, exploring friendships, going to school, and navigating adolescence. But for a smaller group, often hidden in plain sight, childhood is a time of exhaustion and great responsibility.

How could anyone be so burdened at such a young age?

To learn more, mmLearn spoke with Connie Siskowski, RN, PhD, President and Founder at the American Association of Caregiving Youth.

Are Youth Caregivers common? Who are they?

Caregiving by youth is more common that people imagine. The only national study, Young Caregivers in the US, released in 2005, showed there were at least 1.3 million child caregivers ages 8-18. They are a silent population who don't want to be different from their peers. They are fearful of being split up - either removed from their homes because of the types of care they must deliver, or being an undocumented immigrant and thus vulnerable to deportation.

Youth Caregivers, both boys and girls, sacrifice their education, health, well-being and childhood to provide care for family members who are ill, injured, elderly or disabled. The "family" may mean immediate family; or with today's more blended/extended families, the children's role may extend beyond the typical parent, grandparent (or great-grandparent), and siblings. Often, it includes caring for more than one person.

How do they end up assuming their role as caregiver?

Some children have no choice. They are the only ones in single parent or grandparent homes, and other family is not around or available to assist on a regular basis. Others are assigned. They, too, have little choice. Yet others willingly step up to the plate to relieve another family member; they simply want to help or find pleasure and purpose in taking on these responsibilities.

How do their lives/circumstances differ from those who traditionally assume care/responsibility for elder relatives?

There are many similarities in the effects of caregiving between adults and children. However, children lack an experience bank, support, or the recognition that an adult caregiver receives. The physical demands can be more taxing on bodies that are not fully grown. Developmentally, experiencing childhood is an important aspect of growing up. For child caregivers, childhood is often lost.

Finally, these years are when children are supposed to be formally educated. That is their "job." So, like adult employed caregivers who exhibit presenteeism, tardiness, absenteeism, poor performance with lack of promotions, and with some even needing to quit work, the aspects among youth caregivers mirror adults as they struggle to juggle school with home responsibilities and their personal lives.

How does raising awareness of their situations help?

By increasing understanding of the issues they face, caregiving youth who have the highest levels of responsibility could be included among those designated as "at-risk," and thus receive special support services such as tutoring and mentoring. Health professionals could include them in care planning. Respite services could become available. Educators can be understanding and extend deadlines when needed. Caregiving youth could earn community service hours for the work they do at home so they can feel valued within their family and society.

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