Families’ experiences of central-line infection in children: a qualitative study

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.