Background: Trust and comfort in communicating with their transplant care team are essential to pediatric transplant recipients and families’ adjustment and adherence to the medical regimen. Patients and caregivers’ perception of validity and importance of the care team’s advice can impact outcomes and barriers should be identified and addressed. This project aimed to obtain baseline data on trust and comfort of transplant patients and families with their care team.
Method: Participants were patients (n=39) and caregivers (n=45, total N=84) presenting to the post-kidney transplant clinic in a pediatric hospital in an urban setting. A survey of healthcare trust and comfort in communication with providers was developed and administered to patients or caregivers (based on age and developmental level) using an electronic tablet.
Results: The racial makeup of the participants was 30 Black (35.7%), 25 Latinx (29.8%), 17 White (20.2%), 9 Asian (10.7%), and 3 “other”. 48 patients (57.1%) identified English and 15 (17.8%) identified Spanish as the primary language spoken at home; other languages reported were Arabic, Dari, Korean, Vietnamese, and Urdu. 5 participants noted feeling neutral about talking to providers about medications, all others were somewhat or very comfortable. 2 participants were uncomfortable talking about weight and diet, 8 were neutral, others were somewhat or very comfortable. Participants were least comfortable talking about financial issues (2 uncomfortable, 4 somewhat uncomfortable, 13 neutral) and emotional issues (5 somewhat uncomfortable, 9 neutral). One patient was uncomfortable and one was somewhat uncomfortable reaching out to providers between clinic visits. One participant noted their providers are not invested in their care. Most participants noted trusting or somewhat trusting their providers though 5 participants were neutral. 9 participants noted leaving their appointments with only somewhat clear understanding of the care plan.
Conclusion: Pediatric kidney transplant patients are racially diverse and a significant portion identify languages other than English as their primary language. It is important to use culturally competent approaches and appropriate interpretation services while discussing healthcare needs with all patients. While most patients and families are comfortable discussing medical needs with providers and trust provider’s advice, some may have hesitations regarding certain topics and may not feel comfortable reaching out to providers. It is important to identify these barriers and adequately address all patient needs to optimize transplant outcomes.