A "Whole Child Approach": Parent Experiences with Acute Care Hospitalizations for Children with Autism Spectrum Disorder and Behavioral Health Needs

Children with Autism Spectrum Disorder (ASD) experience increased hospitalizations as compared to the general population, particularly in the context of mental health crises. Given the unique needs of children with ASD and behavioral health needs that can either lead to or emerge during hospitalization, an understanding of hospital experiences is critical. To date, research on caregiver experiences in acute care medical hospital settings is limited. Therefore, the purpose of this qualitative study was to investigate caregiver experiences with inpatient care for children with ASD and behavioral health needs, including factors and practices that impacted or were desirable for care. Two focus groups were conducted with a total of 12 parents of children with ASD admitted to a large pediatric hospital. Data were analyzed using interpretive description. Emerging themes pointed to the child, family, and staff factors and practices that intersect to influence hospitalization experiences. Child factors included the child's communication, sensory, behavioral, medical, and safety needs. Family factors included the family's relationship with the healthcare team, own needs, and advocacy experiences. Staff factors included staff communication practices, comfort, and knowledge when providing care. Overall, this research demonstrates the complexity of factors and practices that impact the behavioral health hospitalization experience for children with ASD and their caregivers. Experiences varied widely and were guided by the unique needs of each child. Findings point to care practices that can be adopted to best meet the needs of all stakeholders during hospitalization and offer implications for future educational initiatives.