LAUSR

Objective Central venous access devices (CVADs), often known as central lines, are important for delivering medically complex care in children, and are increasingly used for children living at home. Central line-associated bloodstream infection (CLABSI) is a serious, life-threatening complication. Although the physical consequences of CLABSIs are well documented, families’ views and experiences of CLABSI are poorly understood. Design Qualitative study using semistructured interviews with participants from 11 families of a child living at home with a CVAD. Participants Parents of children aged 4–12 years living at home with a CVAD. Four fathers and nine mothers participated in interviews. Results The risk of CLABSI is a constant fear for families of a child with a CVAD. Though avoiding infection is a key priority for families, it is not the only one: maintaining a sense of ‘normal life’ is another goal. Infection prevention and control require much work and expertise on the part of families, contributing significantly to families’ physical and emotional workload. Conclusions Living with the risk of CLABSI poses additional burdens that impact on the physical and emotional well-being of families. Services to better support families to manage these burdens are needed. In this qualitative study using semi-structured interviews of caregivers of children with central-venous access devices, families report that living with the risk of central line-associated bloodstream infections poses important burdens on families that impact their physical and emotional well-being.