Abstract:
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.
Reference:Soto C, Dixon-Woods M, Tarrant C. Families’ experiences of central-line infection in children: a qualitative study. Arch Dis Child. 2022 Jul 21:archdischild-2022-324186. doi: 10.1136/archdischild-2022-324186. Epub ahead of print. PMID: 35863869.