This qualitative study evaluated barriers and facilitators to mobility in the homes of children with medical complexity (CMC) and the subsequent impact on CMC and their families. Eighteen caregivers of CMC were interviewed. Parents described that accessibility barriers impaired delivery of care at home and impacted the child's participation in family life. The most inaccessible areas were stairs and bathrooms. Mobility and transfers became more difficult as children grew larger. Parents and children sustained injuries from performance of activities of daily living (ADLs). When available, durable medical equipment (DME) and home modifications improved home access and typically were funded using insurance and state Title V funds. However, parents reported that larger home modifications, such as bathroom modifications, were cost prohibitive. A pediatrician's inquiry about mobility barriers may reveal crucial information about delivery of home care to CMC. CMC may be referred to rehabilitation specialists to address mobility needs.
Keywords: architectural accessibility; caregiver; children with disabilities; children with medical complexity; pediatrics.