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Published on: July 13, 2019
Experiences of children with central venous access devices: a mixed-methods study
Amanda J Ullman1,2,3, Tricia M Kleidon4,5,6, Victoria Gibson4,5
1School of Nursing, Midwifery and Social Work, University of Queensland, Brisbane, QLD, Australia. a.ullman@uq.edu.au.
Insights
Children and families report predominantly positive experiences with central venous access devices (CVADs), influenced by personalized care and environment. Addressing care variations is key to optimizing the CVAD journey for pediatric patients.
Area of Science:
- Pediatric Healthcare
- Patient Experience Research
- Medical Device Management
Background:
- Central venous access devices (CVADs) are crucial for pediatric patients requiring long-term treatment.
- Understanding the child and family experience with CVADs is essential for holistic care.
- Environmental factors, both in-hospital and at home, significantly impact the CVAD experience.
Purpose of the Study:
- To explore the multifaceted experiences of children and families managing central venous access devices (CVADs).
- To investigate how transitions between hospital, home, and community settings influence the CVAD experience.
- To identify factors that contribute to positive or negative experiences with pediatric CVADs.
Main Methods:
- A mixed-methods study was conducted in inpatient, outpatient, and home-care settings.
- 163 pediatric patients with CVADs were followed for up to 3 months or device removal.
- Semi-structured interviews were conducted with a subgroup of primary caregivers to gather qualitative insights.
Main Results:
- The overall CVAD experience was predominantly positive, linked to personalized care, healthcare quality, and well-being.
- Patient and family experiences were shaped by environmental transitions and variations in care.
- Device choice and insertion site impacted daily activities, school, and recreation.
Conclusions:
- CVAD experiences are influenced by both unchangeable (e.g., diagnosis) and changeable factors (e.g., education, care consistency).
- Clinical policies should be developed to incorporate child and family perspectives for improved CVAD management.
- Collaborative efforts between clinicians, researchers, and families are vital for positive CVAD experiences.
Background:
Our study aims to explore the experience of having a central venous access device (CVAD) from the perspective of the child and family and how movements within and outside of hospital environments influence this experience.
Methods:
A mixed-methods study was conducted across Children's Health Queensland (Australia), including inpatient and home-care settings. Children less than 18 years with CVADs were eligible and followed for 3 months or CVAD removal. A subgroup of primary caregivers participated in semi-structured interviews. Quantitative and qualitative measures of child and family CVAD experiences were explored.
Results:
In total, 163 patients with 200 CVADs were recruited and followed for 6993 catheter days (3329 [48%] inpatients; 3147 [45%] outpatients; 517 [7%] home). Seventeen participants were interviewed. Experiences of having a CVAD were complex but predominantly positive primarily related to personalized CVAD care, healthcare quality, and general wellbeing. Their experience was shaped by their movements through hospital and home environments, including care variation and distress with procedures. Device selection and insertion location further influenced experience, including safety, impairments in activities of daily living, school, and recreation.
Conclusions:
CVAD experiences were influenced by nonmodifiable (e.g., diagnosis) and modifiable factors (e.g., education; care variation). Clinical approaches and policies that account for family and child considerations should be explored.
Impact:
Variation in decision making and management for pediatric CVADs is accepted by many clinicians, but the influence this variation has on the health experience of children and their families is less well explored. This is the first study to draw from a broad range of children requiring CVADs to determine their experience within and outside of healthcare facilities. Interdisciplinary clinicians and researchers need to work collaboratively with children and their families to provide resources and support services to ensure they have positive experiences with CVADs, no matter where they are managed, or who they are managed by.
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