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Families' experiences of central-line infection in children: a qualitative study
Carmen Soto1, Mary Dixon-Woods2, Carolyn Tarrant3
1Paediatric Oncology, University College London Hospitals NHS Foundation Trust, London, UK.
Insights
Families of children with central lines fear infection, impacting daily life. Managing central line-associated bloodstream infections (CLABSI) adds significant physical and emotional burdens, requiring better support services.
Area of Science:
- Pediatric healthcare
- Patient and family experience
- Infection control
Background:
- Central venous access devices (CVADs) are vital for medically complex children, often used at home.
- Central line-associated bloodstream infections (CLABSI) are severe complications, but family perspectives are under-researched.
Purpose of the Study:
- To explore the views and experiences of families caring for children with CVADs at home, focusing on CLABSI.
- To understand the burdens associated with managing CVADs and preventing infections.
Main Methods:
- Qualitative study utilizing semistructured interviews.
- Involved 11 families with a child (aged 4-12 years) living at home with a CVAD.
- Participants included four fathers and nine mothers.
Main Results:
- Families experience constant fear of CLABSI, balancing infection prevention with maintaining a 'normal life'.
- Infection prevention requires significant family effort, increasing physical and emotional workload.
- Managing CVADs and preventing CLABSI imposes substantial burdens on family well-being.
Conclusions:
- The risk of CLABSI creates significant physical and emotional burdens for families.
- There is a need for enhanced support services to help families manage these challenges.
- Addressing family experiences is crucial for holistic pediatric care involving CVADs.
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.
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