Why YCare

Kids are caregivers:

Approximately 1.4 million children and youth between the ages of 8-18 in the U.S. provide care to an ill family member and are considered “young caregivers.” Young caregivers are involved with the activities of daily living (ADLs) and instrumental activities of daily living (IADLs), which include managing complex assistive devices, feeding, bathing and toileting. They are tasked with the same kinds of caregiving as adults, yet are overlooked in state and national caregiving policies and programs despite providing care in high numbers.

Kids do tasks without training:

  • Young caregivers have little training (findings that are reflected in the adult caregiving community) and have stated that they want acknowledgment and support.
  • In a study of young caregivers for families with Huntington’s disease (HD), participants stated a need for acknowledgment and support, specifically asking for information, advice and hands-on assistance with caregiving.
  • In both HD and ALS, 70% of the youth had no training or education in providing care, despite involvement with an average of 11 caretaking tasks, revealing a reliance on “common sense,” “watching and observing,” and relying on the person with the illness to guide the care provided.
  • The lack of preparation and skill development is reflected in the adult caregiving population. Research indicates that 57% of adult caregivers perform medical nursing tasks, almost all of whom also provide ADLs and IADLs, yet most of these caregivers complete tasks with little training or preparation.

Benefits of YCare:

  • A skill-oriented caregiving training program highlights the potential for long-term positive effects of interventions that build skills and capacity for caregiving, but the research does not yet include youth caregivers.
  • Designed specifically for young caregivers, YCare improves self-efficacy, social support and health-related quality of life, while helping young caregivers create and sustain caregiving self-management behaviors and goals over time.
  • YCare expands the caregiving science paradigm to include children and youth, looking at the issues of child well-being through a different lens.
  • Without dramatic social and health care changes, young caregivers will continue to provide care, particularly in families stressed with few resources and access to outside care. Therefore, the YCare intervention focuses on (1) identifying current and potential tasks and skills undertaken by youth; (2) teaching caregiving skills to youth, creating a self-management trajectory; (3) engaging with and receiving support from “like” youth; and (4) increasing self-efficacy and health-related quality of life over time.

YCare Provides:

  • Peer support
  • Training
  • Confidence
  • Engagement with professionals
Dr. Kavanaugh presenting a plenary, “Research and Support for Young Caregivers in Families with ALS” at the 30th International Symposium on ALS/MND on December 5, 2019, in Perth, Australia.