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Kidney Week

Abstract: TH-PO278

Concerns About and Impacts of Treatment for Kidney Failure from the Perspectives of African American Family Members

Session Information

Category: Dialysis

  • 701 Dialysis: Hemodialysis and Frequent Dialysis

Authors

  • 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
Background

Understanding African American families’ experiences with treatment for kidney failure is necessary for informing the delivery of family-centered care and the design of appropriate interventions. This qualitative study explored treatment-related questions, concerns, and positive and negative family impacts from the perspectives of African American family members of pre-kidney failure and kidney failure patients.

Methods

Thirty-five African American family members of kidney disease patients receiving medical care in Baltimore, Maryland participated in five focus groups stratified by patients' treatment status in the past year (progressive kidney disease, hemodialysis, peritoneal dialysis, evaluated for living-donor kidney transplantation, or underwent living-donor kidney transplantation). Discussions were analyzed thematically. Themes present in discussions from multiple groups were highlighted to provide insight into common experiences. Exemplar quotes are provided.

Results

Family members raised questions and concerns about patients’ “high risk of” infections, “mental breakdowns,” constrained freedom of choice (“Dialysis would just bust her goals”), “the financial aspect” of treatment, and treatment delivery and logistics, specifically inconveniences (“The tube bothers her”), patients’ treatment adherence (“Sneaking around and getting the chocolate”), and care quality (“They should have better training”). Positive family impacts included improvements in patients’ well-being (“He’s a lot more compassionate”), “good” patient and family quality of life, strengthened family relationships (“rallying” around the patient), greater freedom of choice (“Going to work again”), and family members’ “chance to give life” to patients via transplantation. They identified decrements in patients’ well-being (“Her being down on herself”), family members’ adverse psychological treatment reactions (“I’m scared”), strained family relationships (“My son and I are not speaking”), and caregiving difficulties (“You as family member need support too”) as negative family impacts.

Conclusion

Findings underscore the importance of addressing African American family members’ perspectives on kidney failure treatment through additional research, early and tailored education, and supportive interventions.

Funding

  • NIDDK Support