Facilitators and barriers to pediatric living kidney donation unique for each family
Key takeaways:
- Of Philadelphia families who preferred a language other than English, 24% chose living kidney donation for their child.
- These families face distinct barriers and facilitators to living kidney donation.
BOSTON — About 24% of families who preferred a language other than English received a kidney from a living donor for their child compared with 49% of families who spoke English, according to study data from a single center in Philadelphia.
In an oral poster session — new at this year’s National Kidney Foundation Spring Clinical Meetings — Stephanie Kerkvliet, MD, a fellow in the division of nephrology at the Children’s Hospital of Philadelphia, presented findings from an ongoing mixed methods study of factors that promote or limit access to living kidney donation for children.
“There are a lot of facilitators and barriers to living donor kidney transplantation in children, and those families who speak languages other than English have unique facilitators and barriers that we need to consider,” Kerkvliet told Healio.
Employing the Social Ecological Model of Health, Kerkvliet’s study is exploring the multiple intrapersonal, interpersonal, community, organization and policy/environment factors that affect the choice to pursue living kidney donation rather than deceased donation for a child. She used data from medical records of 93 pediatric kidney transplant patients during the past 5 years. She conducted semi-structured interviews with 21 patient caregivers who preferred to speak English or languages other than English and with 17 key informants, such as physicians, nurses and social workers, with the aim of explaining the quantitative results with qualitative findings, she said.
The mean age of the patients was 9.8 years at transplantation, 65% were boys, 52% were white, 29% Black and 15% Hispanic. Among the families, 24% were bilingual or preferred a language other than English, including Spanish, Arabic, Mandarin Chinese and Vietnamese, and 18% used an interpreter at medical appointments; 11% used medical assistance transportation programs, and 51% had public insurance coverage. The key informants had an average of 10 years working in transplant medicine.
Risk factors for lower likelihood of receiving a kidney from a living donor were Black race, having glomerular kidney disease, transportation barriers and primary public insurance, according to the researchers.
Interviews are ongoing, Kerkvliet said.
“One of the things that’s been challenging [is that] language competency is such a range,” she told Healio. “Families will sometimes use an interpreter at some visits, and some use them at all visits. Sometimes one parent speaks a language different than English, and another is fluent in English and another language. We also have a population who I’m hoping to be able to include who speak Bengali at our institution.”
Caregivers who preferred languages other than English positively highlighted support from interpreters and translation services and from social workers who helped arrange transportation, secure reliable housing and assisted in filling out paperwork.
A particular barrier was the number and length of medical visits, which can take twice as long when translation is needed, Kerkvliet said.
In addition, community level factors can both support families, with transportation, fundraising and meals, for example, or impede living donation with medical beliefs and fear of vaccines, for example.
“I am so inspired by our patients’ resiliency and creativity and intuition on so many levels,” Kerkvliet said. “I hear families who tell me all these challenges they’ve had, like a single mom taking care of a child on dialysis, and I ask what supports they have and ... what could we do to support you better? And they say, ‘No, nothing, everything is fine.’
“There are a lot of things we can do to support families better, but I’m amazed at how strong our families are and how creative and resilient they are in these really challenging circumstances,” Kerkvliet said.
For more information:
Stephanie Kerkvliet, MD, can be reached at kerkvliets@chop.edu.
Editor's note: This story was updated on April 17, 2025, to reflect corrected percentages for living kidney donations. The editors regret the error.
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Kerkvliet S, et al. Abstract G-570. Presented at: NKF Spring Clinical Meetings; April 9-13, 2025; Boston.
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