Partnering with Family Advocates to Understand the Impact on Families Caring for a Child with a Serious Mental Health Challenge

Family-driven care is a key principle of the system of care framework, but little research has documented the impact caring for a child with a serious mental health challenge has on families. In partnership with family advocates, this prospective, descriptive study was conducted to understand the impact a child’s mental health challenge has on families’ time, finances, life events, and caregiver employment. Study results showed the average family spent over $250 a week in unreimbursed costs, even though 84% of the children in the study received Medicaid. Caregivers spent approximately 10 h per week attending to the child’s mental health needs, not including direct care for the child. Caregivers also reported a substantial impact on their employment. The results of this study have implications for the system of care supports for families. Perhaps most importantly, systems must utilize two-generation strategies in systems of care to minimize the impact on caregiver employment.