The Impact of the Lack of Access to Home Health Nursing on Families of Children with Medical Complexity in the United States

For families of children with medical complexity (CMC), lack of nursing support in the home can result in significant social and financial hardships beyond its effects on clinical outcomes. This study aimed to quantify the impact of limited availability of private duty nursing. Families of CMC reported that inadequate access to in-home nursing creates significant downstream effects including delays in hospital discharge, major career changes among parents, especially on mothers, and significant annual income loss. Strategies that connect families of medically complex children with skilled nurses in their communities are urgently needed to improve the health of CMC and lessen these burdens on families.