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To create a world without kidney diseases, the ASN Alliance for Kidney Health elevates care by educating and informing, driving breakthroughs and innovation, and advocating for policies that create transformative changes in kidney medicine throughout the world.

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Kidney Week

Abstract: FR-PO1177

Ethnography: A Novel Approach to Improving Care for Pediatric Kidney Transplant Recipients

Session Information

  • Pediatric Nephrology - I
    October 26, 2018 | Location: Exhibit Hall, San Diego Convention Center
    Abstract Time: 10:00 AM - 12:00 PM

Category: Pediatric Nephrology

  • 1600 Pediatric Nephrology


  • Bignall, O. N. Ray, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
  • Taylor, Veronica A., Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
  • Pai, Ahna Lh, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
  • Goebel, Jens W., Children's Hospital Colorado, Aurora, Colorado, United States
  • Masterson, Justin, SEEK Company, Cincinnati, Ohio, United States
  • Kirby, Cassie L., Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
  • Hooper, David K., Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States

Group or Team Name

  • Improving Renal Outcomes Collaborative

Current models of care for pediatric kidney transplant recipients (pKTRs) may be ill-suited to meet their needs, leading to suboptimal utilization, barriers to adherence, and psychosocial stressors that adversely affect both patients and families. Optimizing care delivery for these complex patients requires insight into their social and emotional needs, perceptions of care, and future goals. Aiming to inform design of an improved system of care, we assessed convergent and divergent perceptions of pKTRs and their families.


We conducted a qualitative analysis of semi-structured interviews and ethnographies with pKTRs (n=12; ages 11-22) and caregivers (n=15) identified in the Improving Renal Outcomes Collaborative (IROC). Participants were selected and stratified according to medical and psychosocial complexity, and level of engagement with their transplant team. Audio recorded interviews were transcribed and assessed for themes using a grounded theory approach.


Considerations around Kidney Care was the major theme that emerged from both pKTRs and caregivers, particularly experience on dialysis and learning about kidney disease care. Other cross-cutting themes included maintaining a sense of normalcy; inability to recognize signs of kidney disease prior to transplant; and reluctance to meet other pKTRs. Major themes more common among caregivers were Family Dynamics (e.g. caregiver stress/strain and consideration of family members as organ donors; p<0.001) and Life Stressors (e.g. moving or traveling for a child’s transplant care; p<0.001). More common among patients were Education/Social Development (e.g. impact of disease on school and extracurricular activities; p<0.001), and Transition of Care (e.g. transition to an adult provider; p<0.001). Co-produced with patients and families, ethnographies were used to generate thematic personas to aid in the development of IROC, our learning health system designed to improve health and quality of life for pKTRs.


Understanding patient and family motivations and needs are fundamental to designing new, more effective systems of care. Such systems should address both common motifs as well as those specific to patients and caregivers in order to foster engagement and shared decision making between patients and the medical team.