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Abstract: FR-PO518

"We Try Not to Let PD Control Us": Patient and Caregiver Perceptions of Empowerment in Managing Peritoneal Dialysis

Session Information

Category: Dialysis

  • 703 Dialysis: Peritoneal Dialysis

Authors

  • Baumgart, Amanda, The University of Sydney, Sydney, New South Wales, Australia
  • Manera, Karine E., The University of Sydney, Sydney, New South Wales, Australia
  • Cho, Yeoung Jee, Princess Alexandra Hospital, Brisbane, Queensland, Australia
  • Shen, Jenny I., Los Angeles Biomedical Research Institute, Torrance, California, United States
  • Craig, Jonathan C., Centre for Kidney Research, Sydney, New South Wales, Australia
  • Johnson, David W., Princess Alexandra Hospital, Brisbane, Queensland, Australia
  • Tong, Allison, The University of Sydney, Sydney, New South Wales, Australia
Background

While peritoneal dialysis (PD) can offer patients more independence and flexibility compared with hemodialysis, 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.

Methods

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.

Results

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). Illustrative quotations are provided in Table 1.

Conclusion

For patients and caregivers, understanding the rationale behind lifestyle restrictions, practical assistance and family support in managing PD facilitated empowerment, whereas being constrained in time and capacity for life participation 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.

Table 1. Selected quotations
Theme Quotations
Lacking clarity for self-management Yeah, and if not, why not? I want to know the physics, the mechanics behind why it's going to damage this, and if I'm going to get hurt... that's what I need to know. So then I understand. Not just tell me "you can't do that". Why?

The dietitian for my kidneys says you can't do this and you can't do that, and I say hang on, I'm a diabetic. I say this and you say that, which is right and which is wrong? Then they said, as long as you don't overdo anything, just do what you do. So it's confusing, I mean one dietitian says you do this, another one says that, and they conflict.
Restricted flexibility and freedom in doing dialysis regimen Before, I can go out whenever I want. But now I have to schedule every day... the only thing is that I have no time anymore for everything. Every time must be budgeted.

Like I was working, I've been working for how many years? And just for two years I am not working, so it could be affecting me, staying home, seeing everybody going, working, and I'm at home and staying there doing my dialysis and things like that... At the moment it's like a full stop. I can't move forward in my life. It's like you have to stay home, you have to do this.
Strength with supportive relationships I made the trip with no hassle whatsoever. The people in the center, they have got lots of tricks up their sleeve, like you know, when you're doing travelling you find yourself in all sorts of situations. Doing an exchange may be something you need to take care of, but the setting is not something that you can choose, so they gave me a couple of tricks up my sleeve.

So I think that what's important to me is the relationship with me and the PD unit has really helped, like all the nurses are really compassionate and really get to know me. They sort of help me along through the journey.

So they know I have to be back home or I can't stay out, if I'm going somewhere in the morning or whatever. So they all work with me, and everybody is just like, it is what it is.
Defying constraints Since you're sleeping while your machine is on at night - I do the automated - I'm done as soon as I wake up, and make sure the hours are taken care of. Then I'm free to go about my day just like I regularly did before. So there's really no change in my activities during the day, basically.

We try not to let the dialysis control us, you know. I say forget about the time, you do it whenever, as a family together we go out, but we come back on the time. We don't lose the time, but we just, six hours away from the machine, and in that time, that is where we find to put what we want to do as a family.

Most people don't even know I'm on dialysis unless I tell them. Because I don't feel like it's a big deal to me.
Regaining lost vitality First of all I thank God and the doctors. I had been swollen for about three years, I couldn't walk, and I ended in the hospital and I thank God again and the doctors that are helping me and I feel fine now. [translated]

Since she's been on dialysis, at least it's giver her a bit of pep in her step again nowadays. I can see, from my point of view, she was going downhill rapidly until the diagnosis. At least now we can get out and enjoy the grandkids.
Personal growth through adjustment As crazy as it may sound, I feel like being on dialysis really pushed me more in life, of becoming independent. Through dealing with my personal issues, my self-issues, it really helped me. It made me see life better by being on dialysis, it's crazy but that's how it made me.

The hardest is acceptance... I used to think that I wasn't going to do dialysis. I didn't want to do that. "Why would I want a life where I'm going to be slave to a machine?" I had to be in treatment to accept that it is life changing. I we all should go through that. [translated]