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Kidney Week

Abstract: TH-OR094

Patient and Caregiver Perspectives on Burnout in Peritoneal Dialysis

Session Information

  • Home Dialysis
    November 07, 2019 | Location: 143, Walter E. Washington Convention Center
    Abstract Time: 05:42 PM - 05:54 PM

Category: Dialysis

  • 703 Dialysis: Peritoneal Dialysis

Authors

  • Oveyssi, Justin Omeed, St. Mary Medical Center, Long Beach, California, United States
  • Manera, Karine E., The University of Sydney, Westmead, New South Wales, Australia
  • Baumgart, Amanda, The University of Sydney, Westmead, New South Wales, Australia
  • Cho, Yeoung Jee, The University of Queensland, Brisbane, Queensland, Australia
  • Forfang, Derek L., National Forum of ESRD Networks, San Pablo, California, United States
  • Saxena, Anjali B., Stanford University / Santa Clara Valley Med Ctr, Los Altos, California, United States
  • Tong, Allison, The University of Sydney, Westmead, New South Wales, Australia
  • Shen, Jenny I., LaBiomed at Harbor-UCLA, Torrance, California, United States
Background

Peritoneal dialysis (PD) can offer patients more autonomy and flexibility compared with in-center hemodialysis. However, burnout – defined as mental, emotional, or physical exhaustion that leads to negative attitudes towards PD or an inability to perform PD safely – is associated with an increased risk of peritonitis or transfer to hemodialysis. We aimed to describe the perspectives of burnout among patients on PD and their caregivers.

Methods

81 patients and 45 caregivers from 9 dialysis units in Australia, Hong Kong, and the US participated in 14 focus groups. Transcripts were analyzed thematically.

Results

We identified two themes. Suffering an unrelenting responsibilitycontributed 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 alone the burden and uncertainty of what to expect from PD. Adapting and building resilience encompassed establishing a new normal, drawing hope and support from family, relying on faith and hope for motivation, and finding meaning in other activities.

Conclusion

Patients on PD and their caregivers describe burnout as an unrelenting responsibility that they cope with by adapting and building resilience. Better informing patients and caregivers about the challenges of living with PD could prevent or delay burnout. Recognizing and providing resources to cope with burnout are essential to ensuring the well-being of patients on PD and their caregivers. Further research is needed to develop tools to screen for burnout and interventions for improved care and outcomes in patients on PD.

Illustrative Quotes
ThemeSubthemeQuote
Suffering an unrelenting responsibilityOverwhelmed by the daily regimen"Sometimes I feel like, when it comes to five or four times a day, five hours and then, sometimes I feel like I don’t want to do it. Leave it. Let me die, I can’t take this anymore."
Life coming to a halt"At the moment it’s like a full stop. I can’t move forward in my life."
Tolerating PD regimen for survival"And it’s like, girl, you’re dying. You don’t have a choice."
Bearing alone the burden and uncertainty of what to expect from PD"You need social workers and psychologists for people that are feeling that way, they need to have counselling and support groups, because I can understand being in that frame of mind, where you would go okay, yeah, okay I’ve just had enough. I’ve had too much pain, I’m too tired, I’m too tired of fighting, right. They need support to know that there are still people here, and if it is their choice, then that’s okay, and then the support to handle the side effects, the pain and the fear that they go through, dealing with it."
Adapting and building resilienceEstablishing a new normal"So it does depress you, it does do some things with you, but I’m still here, and my new normal is, I have to do dialysis. My new normal is, I have to have shots."
Drawing hope and support from family“I think if I hadn’t have had supportive people around me at that stage and also being strong in myself, I could’ve gone no, bugger it, why go through this, why do dialysis every day, why put up with it.”
Relying on faith and hope for motivation“I'm a strong believer in the Bible, so that gives me a foundation of hope.”
Finding meaning in other activities“I notice for a caregiver that you have to make her happy. Sometimes I go to things, and it's a party...luau. I take them with me. That's the most happiest thing even if it's two hours just to be there and come back home.”

Funding

  • NIDDK Support