Experiences of patients undergoing dialysis who are from ethnic and racial minorities

Background: Approximately 500,000 people in the United States are affected by end-stage kidney disease (ESKD), 53% of whom are Black or Latino. ESKD significantly impacts psychosocial health and quality of life. However, few studies address the psychosocial aspects of ESKD, especially among black and Latino adults. This study sought to understand the psychosocial context of living with ESKD among black and Latino adults who reside in a medically underserved community.

Study design: A qualitative study.

Setting and participants: Participants were recruited from a dialysis centre in East New York, Brooklyn, a medically underserved community.

Methodology: Descriptive phenomenology was used as a qualitative approach for capturing the experiences of patients who received dialysis in this community.

Analytical approach: Open-ended interviews were audio-taped, transcribed, coded and analysed using standard qualitative techniques.

Results: Data saturation was achieved at 36 participants. The following five themes emerged: the transition to dialysis is abrupt and unexpected; denial is often an initial response; dialysis is the new normal and in order to survive one must forget the past and press forward; dialysis changes everything and impacts the entire family; strength was often found in faith and family.

Limitations: This study was conducted in one setting and may need to be expanded to other sites to capture the experiences of patients cared for in other settings.

Conclusion: These findings have practical implications for informing patient-centered models of care that are more responsive to the psychosocial needs of patients with ESKD living in medically underserved communities.