Experiences of children with central venous access devices: a mixed-methods study

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.