Project Summary:
Children living with medical complexity are fragile and require extensive, primarily home-based care. Over 220,000 children and youth have a complex medical need, many of whom have a sibling in the home, assisting in care. Family caregivers provide medical care, emotional support, and engage with health care professionals, requiring constant, daily care. Yet, how family members understand care, receive training, and support for care is unknown. Including siblings who engage in the same care tasks as adults, yet are left out of state caregiver education and support programs.
The lack of caregiving education and support impacts the person with the illness. A skill-oriented and peer-engaged 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 include youth caregivers. Led by UW-Milwaukee Professor of Social Work Melinda S. Kavanaugh, PHD, MSW, LCSW, the YCare program targets the lack of skills and caregiving education. The program was developed to provide not only care skills and education, but also peer engagement, critical for siblings who are often overlooked and isolated as a response to sibling complex health needs.
The program utilizes small groups, with youth moving through a series of modules addressing primary care tasks, such as basic care, speech/communication, respiratory, and assistive devices. Each module is led by health care professionals trained in the YCare program. Participants learn hands-on skills and tasks, alongside other “like” youth – improving social support, skills, and well-being.
Skill-oriented caregiving programs (e.g., basic skills of moving and handling patients, facilitating daily living activities, and simple nursing tasks) improve well-being and reduce anxiety and depression in adult caregivers, and increase self-efficacy. Given the intensity and frequency of care provided by young caregivers, caregiving intervention and skill building may influence well-being and quality of life.
Community Partner: WisconSibs