Ms Amanda Baumgart1,2, Karine E. Manera1,2, Yeoung Jee Cho3,4, Jenny I. Shen5, Jonathan C. Craig2,6, David W. Johnson3,4, Allison Tong1,2
1The University of Sydney, Sydney, Australia, 2Centre for Kidney Research, Sydney, Australia, 3Princess Alexandra Hospital, Brisbane, Australia, 4Australian Kidney Trials Network, Brisbane, Australia, 5Los Angeles Biomedical Research Institute, Torrance, United States, 6Flinders University, Adelaide, Australia
While peritoneal dialysis (PD) can offer patients more independence and flexibility compared with haemodialysis, the demanding regimen can impose a burden on patients. Patient empowerment can strengthen capacity for self-management and improve outcomes. We aimed to describe patient and caregivers’ perceptions, attitudes and experiences of empowerment in PD.
Adult patients on PD (n = 81) and their caregivers (n = 45) from nine dialysis units in Australia, Hong Kong, and the United States participated in 14 focus groups. Transcripts were thematically analyzed.
We identified six themes: lacking clarity for self-management (limited understanding of rationale behind necessary restrictions, muddled by conflicting information); restricted flexibility and freedom in doing dialysis regimen (burden in budgeting time, confined to be close to home); strength with supportive relationships (gaining reassurance with practical assistance, comforted by considerate health professionals, alleviated with involvement of friends and family); defying constraints (reclaiming the day, undeterred by treatment, refusing to be defined by illness); regaining lost vitality (enabling physical functioning, restoring energy life participation) and personal growth through adjustment (building resilience and enabling positive outlook, accepting the dialysis regimen).
For patients and caregivers, understanding the rationale behind restrictions, practical assistance and family support in managing PD facilitated empowerment. Whereas being constrained in time and capacity outside the home undermined it. While some refused to allow PD to control their lifestyle; education and counseling enhancing practical skills and time management can help patients accept and minimize the disruption of PD, and may improve treatment satisfaction and outcomes.
Biography to come.