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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.

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Abstract: TH-PO271

"I Didn’t Know Better": Family Members' Unexpected Negative Experiences with ESKD Treatments

Session Information

Category: Dialysis

  • 701 Dialysis: Hemodialysis and Frequent Dialysis


  • DePasquale, Nicole, Duke University School of Medicine, Durham, North Carolina, United States
  • Cabacungan, Ashley N., Division of General Internal Medicine, Durham, North Carolina, United States
  • Ephraim, Patti, Johns Hopkins University, Baltimore, Maryland, United States
  • Boyer, Lapricia Lewis, Johns Hopkins University, Baltimore, Maryland, United States
  • Powe, Neil R., Priscilla Chan and Mark Zuckerberg San Francisco Gen Hosp & UCSF, San Francisco, California, United States
  • Boulware, L. Ebony, Duke University School of Medicine, Durham, North Carolina, United States

Understanding the extent to which family members feel prepared for what to expect from patients’ end-stage kidney disease (ESKD) treatment could guide the development of family-centered interventions that enhance their treatment preparedness. We examined unexpected negative experiences with ESKD treatments among family members of dialysis and post-transplant patients to inform family-centered research and clinical care.


Forty-nine family members of patients receiving medical care in the Baltimore, Maryland metropolitan area participated in eight focus groups stratified by their self-reported race (African American or non-African American) and patients’ treatment experience in the past year (in-center hemodialysis, home hemodialysis, peritoneal dialysis, or live donor kidney transplantation). Focus group discussions were analyzed thematically. Themes present in discussions from multiple treatment groups were highlighted to provide insight into common experiences. Exemplar quotes are provided for each theme.


Four themes were identified. Becoming a caregiver reflected family members’ unpreparedness for caregiving responsibilities (“I didn’t expect to have to be involved”) and related consequences (“I couldn’t even sleep”). Psychological responses captured family members’ negative reactions to treatment (“The anxiety”) as well as their perceptions of patients’ reactions (“I think he’s depressed”). Treatment delivery and logistics depicted treatment situations family members considered problematic (“Why can’t they just use layman’s terms?”), challenging (“We had so many medications, it’s constantly juggling that”), or inconvenient (“The space it takes to store 3,000 cases of stuff is unbelievable”) for themselves and patients alike. Morbidity encompassed family members’ perceptions of patients’ experiences with dialysis-related health problems (“More illnesses since dialysis”) and fatigue (“My son was so tired”).


Findings suggest patients’ family members are unprepared for non-clinical, logistical, and clinical aspects of ESKD treatments. Efforts to prepare families for ESKD treatments through more family-centered care, early and tailored education, and interventions targeting caregiver preparedness are needed.


  • NIDDK Support