Meaning of empowerment in peritoneal dialysis: Focus groups with patients and caregivers

Amanda Baumgart, Karine E. Manera, David W. Johnson, Jonathan C. Craig, Jenny I. Shen, Lorena Ruiz, Angela Yee Moon Wang, Terence Yip, Samuel K.S. Fung, Matthew Tong, Achilles Lee, Yeoungjee Cho, Andrea K. Viecelli, Benedicte Sautenet, Armando Teixeira-Pinto, Edwina A. Brown, Gillian Brunier, Jie Dong, Nicole Scholes-Robertson, Tony DunningRajnish Mehrotra, Saraladevi Naicker, Roberto Pecoits-Filho, Jeffrey Perl, Martin Wilkie, Allison Tong

Research output: Contribution to journalArticlepeer-review

26 Citations (Scopus)

Abstract

Background. While peritoneal dialysis (PD) can offer patients more independence and flexibility compared with in-center hemodialysis, managing the ongoing and technically demanding regimen can impose a burden on patients and caregivers. Patient empowerment can strengthen capacity for self-management and improve treatment outcomes. We aimed to describe patients’ and caregivers’ perspectives on the meaning and role of patient empowerment in PD. Methods. Adult patients receiving PD (n ¼ 81) and their caregivers (n ¼ 45), purposively sampled from nine dialysis units in Australia, Hong Kong and the USA, participated in 14 focus groups. Transcripts were thematically analyzed. Results. We identified six themes: lacking clarity for self-management (limited understanding of rationale behind necessary restrictions, muddled by conflicting information); PD regimen restricting flexibility and freedom (burden in budgeting time, confined to be close to home); strength with supportive relationships (gaining reassurance with practical assistance, comforted by considerate health professionals, supported by family and friends); defying constraints (reclaiming the day, undeterred by treatment, refusing to be defined by illness); regaining lost vitality (enabling physical functioning, restoring energy for life participation); and personal growth through adjustment (building resilience and enabling positive outlook, accepting the dialysis regimen). Conclusions. Understanding the rationale behind lifestyle restrictions, practical assistance and family support in managing PD promoted patient empowerment, whereas being constrained in time and capacity for life participation outside the home undermined it. Education, counseling and strategies to minimize the disruption and burden of PD may enhance satisfaction and outcomes in patients requiring PD.

Original languageEnglish
Pages (from-to)1949-1958
Number of pages10
JournalNephrology Dialysis Transplantation
Volume35
Issue number11
DOIs
Publication statusPublished - 1 Nov 2020
Externally publishedYes

Keywords

  • Chronic kidney disease
  • Patient empowerment
  • Peritoneal dialysis
  • Quality of life

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