Patient and Care Partner Perspectives of Psychosocial Issues While on Home Dialysis
- Home Dialysis - I
November 02, 2023 | Location: Exhibit Hall, Pennsylvania Convention Center
Abstract Time: 10:00 AM - 12:00 PM
- 802 Dialysis: Home Dialysis and Peritoneal Dialysis
- Anwaar, Ayesha, Stanford University, Stanford, California, United States
- Hussein, Wael F., Satellite Healthcare, San Jose, California, United States
- Manera, Karine E., The University of Sydney, Sydney, New South Wales, Australia
- Scholes-Robertson, Nicole Jane, The University of Sydney, Sydney, New South Wales, Australia
- Shen, Jenny I., Harbor-UCLA Medical Center, Torrance, California, United States
Home dialysis has many advantages but requires initiative from patients and care partners. Without proper support, patients run the risk of burning out. We sought to explore patients’ and care partners’ perspectives and experiences of the psychosocial factors that make home dialysis challenging, contribute to burnout, and ultimately lead to transfer to in-center hemodialysis (ICHD).
We conducted 5 focus groups and 3 semi-structured interviews of 18 adult English-speaking patients and 11 care partners with experience with home dialysis,16 who had transferred to ICHD, and 13 who were identified as high risk for transfer to ICHD. Transcripts were thematically analyzed.
We identified three themes: 1) being overwhelmed by the reality of dialysis, 2) the exhausting monotony of treatment, and 3) ongoing psychosocial impacts. Participants found it overwhelming to depend on a lifesaving therapy, manage comorbid conditions and deal with machine issues. The exhausting monotony of treatment entailed the burden of time and responsibility required for home dialysis and continually planning/storing dialysis equipment and supplies. Psychosocial impacts included feeling isolated, fear of making a fatal mistake, feeling dependent on others, dealing with body disfigurement issues, and negatively impacting relationships.
Performing home dialysis can be a daunting task for patients and care partners. Care teams need to identify and understand the psychosocial struggles to implement effective support strategies for patients and care partners.
|Overwhelmed by reality of dialysis
|Concurrent management of co-morbidities
|"Yeah because of her diabetes and the fact that the dextrose in the [dialysis] bags makes her sugars worse."
|Frustration at ongoing machine issues
|"It started out pretty rough and that was due to equipment failure. It's a complicated machine, but those failures are draining on me.”
|Burden of time required
|"The first phrase that comes to my mind, I think about dialysis is that it takes time."
|Exhausting monotony of treatment
|Drowning in responsibility
|"It's just a hell of a responsibility with everything or even just with a partner. It's just a lot, a lot to do."
|Continual Logistics and storage management
|"I guess it really didn't hit me until all of the supplies started showing up the machine. Just all these little fine details that you really don't think of.”
|Feelings of isolation
|“You feel like you're on an island by yourself, like you just don't have anywhere to turn.”
|Ongoing psychosocial impacts
|Negatively impacting relationships
|"To be honest, we would take it at each other a lot of times, like his stress would be taken out on me and vice versa."
|Fear of making a fatal error
|"You know, like the horror stories you would hear about if air got in so he would panic."
|Crippling dependence on others
|"First of all, if they were by themselves, I don't know how you do it."