Introducing the NEW Partner Agreement on Tasks for Home Dialysis (PATH-D) Tools—Comments Welcome!
Home dialysis of any type is a challenge for consumers and partners in part because when you start to even think about something new, you don’t know what you don’t know. You don’t know what you are getting yourself into. You don’t know what the day-to day-tasks will look like or how you will fit them into a life that seemed pretty darned busy before tossing dialysis into the mix. I’ve heard from consumers who worry about burdening a partner—and from potential partners who worry about being burdened.
The reality is that there is a continuum of partner involvement with home treatments, from 0% (no partner) to 100% (a partner who does it all), with every step in between, and shifts of tasks back and forth when the health status of either partner changes. From what I’ve seen, dropout rates are higher in training programs that rely on turning partners into technicians while the consumer sits passively.
There are not a lot of studies in this area, but the few there are support the notion that an active consumer role is key to home dialysis success, at least with HD. In our interview study with people doing daily home HD and their care partners, couples in which the dialyzor took a larger role—particularly self-cannulation—were more likely to be thriving.1 A review of 24 studies2 found five key themes, in which the weighing of benefits vs. burdens is clear: 1). Vulnerability of dialyzing independently, 2). Fear of being alone, 3). Concern of family burden, 4). Opportunity to thrive, 5). Appreciating medical responsiveness. And, among 113 successful and unsuccessful home HD users,3 those who used adaptive coping styles were far more likely to sustain home treatment longer than those who did not.
What’s an “adaptive coping style”? Some examples (from here) include facing challenges, assessing them in a realistic way, observing unhealthy emotions and working to change them, and “trying to prevent adverse effects on the body.” Adaptive coping can be taught. While it may be tempting to “sell” home therapies based on how much better they are, it’s also important to offer realistic expectations about what the new tasks and responsibilities will entail.
For this reason, tools to help people picture what their lives might look like with home treatments, anticipate how they will face the new challenges, and communicate about both may help recruitment and retention for PD and home HD. So, here is a draft pair of brand new tools to do just that. The PATH-D has a page for PD and a page for home HD (HHD). They can be used to clarify expectations and roles before, during, and after home training.
I’ve already made some updates to the originals based on input from two Facebook groups, and now it’s YOUR turn. I’d like these to stay on one page, and the font can’t get any smaller. So, if we add something, we’ll have to take something else off to make room. Tell us what you think in the comments section! Please note that these will go into layout and look much nicer when they are done.
Wise M, Schatell D, Klicko K, Burdan A, Showers M. Successful daily home hemodialysis patient-care partner dyads: benefits outweight burdens. Hemodial Int. 2010 Jul;14(3):278-88↩
Walker RC, Hanson CS, Palmer SC, Howard K, Morton RL, Marshall MR, Tong A. Patient and caregiver perspectives on home hemodialysis: a systematic review. Am J Kidney Dis. 2015 Mar;65(3):451-63↩
Nearhos J, Van Eps C, Connor J. Psychological factors associated with successful outcomes in home haemodialysis. Nephrology (Carlton). 2013 Jul;18(7):505-9↩