Patient and caregiver perspectives on burnout in peritoneal dialysis

Justin Oveyssi, Karine E. Manera, Amanda Baumgart, Yeoungjee Cho, Derek Forfang, Anjali Saxena, Jonathan C. Craig, Samuel K.S. Fung, David Harris, David W. Johnson, Peter G. Kerr, Achilles Lee, Lorena Ruiz, Matthew Tong, Angela Yee Moon Wang, Terence Yip, Allison Tong, Jenny I. Shen

Research output: Contribution to journalArticlepeer-review

Abstract

Background: Peritoneal dialysis (PD) can offer patients more autonomy and flexibility compared with in-center hemodialysis (HD). However, burnout – defined as mental, emotional, or physical exhaustion that leads to thoughts of discontinuing PD – is associated with an increased risk of transfer to HD. We aimed to describe the perspectives of burnout among patients on PD and their caregivers. Methods: In this focus group study, 81 patients and 45 caregivers participated in 14 focus groups from 9 dialysis units in Australia, Hong Kong, and the United States. Transcripts were analyzed thematically. Results: We identified two themes. Suffering an unrelenting responsibility contributed to burnout, as patients and caregivers felt overwhelmed by the daily regimen, perceived their life to be coming to a halt, tolerated the PD regimen for survival, and had to bear the burden and uncertainty of what to expect from PD alone. Adapting and building resilience against burnout encompassed establishing a new normal, drawing inspiration and support from family, relying on faith and hope for motivation, and finding meaning in other activities. Conclusions: For patients on PD and their caregivers, burnout was intensified by perceiving PD as an unrelenting, isolating responsibility that they had no choice but to endure, even if it held them back from doing other activities in life. More emphasis on developing strategies to adapt and build resilience could prevent or minimize burnout.

Original languageEnglish
Pages (from-to)484-493
Number of pages10
JournalPERITONEAL DIALYSIS INTERNATIONAL
Volume41
Issue number5
Early online date11 Nov 2020
DOIs
Publication statusPublished - Sep 2021

Keywords

  • Burden
  • burnout
  • dialysis
  • peritoneal dialysis
  • qualitative

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