Abstract
Pediatric oncology patients with an external central venous catheter (CVC) in situ can be discharged from the hospital. Caregivers are expected to learn how to care for the CVC prior to discharge while also dealing with their child's new cancer diagnosis. This study aimed to evaluate the perceptions of a CVC education program received by caregivers to identify opportunities for improvement. A qualitative study was conducted in 3 stages, using an evidence-based co-design approach, involving caregivers and one adolescent patient discharged from the British Columbia Children's Hospital Oncology/Hematology/BMT inpatient unit. Stage I involved semi-structured interviews to gain feedback on the existing CVC education program. In Stage II, educational resources were updated or developed and implemented. For Stage III, the revised CVC education program was evaluated through a focus group and semi-structured interviews. Interview transcripts were analyzed using QSR NVivo(®). The original CVC education program was overall well received. Repeated instruction and support provided by nurses was reported to have increased confidence with performing CVC skills. Participants appreciated the multimodal approach to meet learning needs and expressed interest in additional visual aids. Inconsistencies in nurses' practice and offers of "tips and tricks" were identified to be challenging for caregivers while learning a new skill. Videos depicting CVC care were developed to provide an additional visual tool, decreased inconsistencies in care, and support to caregivers at home. Caring for a CVC at home is challenging and overwhelming for caregivers. A standardized multimodal education program is required to support caregivers at home.