Ventilator-dependent children and the health services system. Unmet needs and coordination of care.

RATIONALE: Children dependent on mechanical ventilation are a vulnerable population by virtue of their chronic disability and are therefore at increased risk for health disparities and access barriers. The present study is the first, to our knowledge, to conduct a large-scale survey of caregivers of ventilator-dependent children to develop a comprehensive socio-demographic profile.
OBJECTIVES: To describe the demographic and health status profile of ventilator-dependent children, to identify the types of unmet needs families caring for a child on a ventilator face, and to determine the correlates of access to care coordination.
METHODS: A survey was administered to 122 parents whose children attended a pediatric home ventilator clinic at a large tertiary Midwestern medical center (84% of the clinic population).
MEASUREMENTS AND MAIN RESULTS: Half of the patient population had severe functional limitations, and 70% had one or more comorbidities. One quarter of caregivers reported current financial struggles, and 16% screened positive for a probable depressive disorder. More than half of families reported unmet needs for care, most frequently therapeutic services and skilled nursing care. Of those reporting an unmet need for skilled nursing care, lack of adequate staffing was the main barrier (71.1%). Financial struggles and a probable caregiver depressive disorder were significantly associated with an unmet need for care coordination.
CONCLUSIONS: This is the first large-scale quantitative study to investigate the themes of unmet need and care coordination within this vulnerable population. The results suggest these families face barriers accessing therapeutic and skilled nursing services, and caregiver mental health and financial struggles may be important points of intervention for service providers through the inclusion of multidisciplinary care teams and the strengthening of social services referral networks.