ASN's Mission

ASN leads the fight to prevent, treat, and cure kidney diseases throughout the world by educating health professionals and scientists, advancing research and innovation, communicating new knowledge, and advocating for the highest quality care for patients.

learn more

Contact ASN

1401 H St, NW, Ste 900, Washington, DC 20005

email@asn-online.org

202-640-4660

The Latest on Twitter

Kidney Week

Abstract: PO2343

Caregiver Perspectives of Pre-Transplant Evaluation for Children

Session Information

Category: Pediatric Nephrology

  • 1700 Pediatric Nephrology

Authors

  • Salmon, Eloise, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States
  • Barr, Laura, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Hill, Douglas, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States
  • Amaral, Sandra, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States
Background

Pre-transplant evaluation is mandated by Centers for Medicare and Medicaid Services, but there is institutional variation in implementation. The family experience of this process also is incompletely understood. Current literature largely focuses on adult transplant recipients. Our interview study aims to fill the knowledge gap about family experience of the evaluation for children.

Methods

Interviews took place 07/2019 - 02/2020 with caregivers of children referred for kidney transplant at our center 07/2017 - 12/2018. The interview guide included closed- and open-ended questions; responses were audio-recorded and then transcribed for coding of themes. Respondents also completed a brief electronic questionnaire.

Results

Our team interviewed caregivers of 19 children; demographics in Fig. 1. Prominent themes included (1) the pre-transplant evaluation is overwhelming and emotional, (2) prior experiences and background knowledge are influential and (3) frustration with communication among teams was common. Fig. 2 highlights representative quotations from caregivers.

Conclusion

These findings are relevant to efforts by nephrologists to optimize delivery of information about transplant and other complex topics. The data highlight the importance of (1) acknowledging the scope of content and continually reevaluating accessibility of delivery (2) recognizing the influence of prior experiences and tailoring elements accordingly for increased family-centeredness and (3) making concerted efforts to define roles and set expectations, especially when multiple teams are involved in care.

Fig. 1

Fig. 2

Funding

  • NIDDK Support