Caring for Home Dialysis Care Partners

There is limited research on dialysis care partner burden. The Frequent Hemodialysis (HD) Network (FHN) Trial randomly assigned patients to the following conditions and compared health-related quality of life, presence of depression, and patient perception of caregiver burden:

In-center HD

• Three times a week
• Six times a week

Nocturnal home HD

• Three times a week
• Six times a week

The authors surveyed patients about their perceptions of how burdened their unpaid care partners felt using the Coisineau Self-Perceived Burden Scale. They found there was no significant difference in how patients perceived the burden to their unpaid caregivers when did in-center HD three or six times a week (though there was double time for transportation to a clinic). Patients doing nocturnal home HD six times a week perceived that their caregivers had a higher burden than those doing treatments three time a week, likely due to double the amount of time to do home HD tasks weekly. They expressed concern that patients who reported a higher caregiver burden might be more likely to be depressed, have worse health-related quality of life scores, and to skip treatments. However, a key limitation of this study is that no caregivers were directly surveyed to determine if the patients’ perceptions of their burdens were accurate!¹

Some home HD patients do require help from a care partner for home dialysis tasks. Even those who dialyze independently most of the time may, on occasion, require a care partner’s help. But, some care partners take on tasks patients could do, especially if training sets up an expectation that the care partner is to serve much like a nurse or patient care technician. Dialysis staff typically see home dialysis patients much more than they see or communicate with care partners. Staff members’ impression of how well care partners are doing may be filtered through the patient’s eyes. Having little opportunity to directly assess the care partner’s stress and having care partners who may try to hide their stress from the patient, it’s impossible to know how much stress a care partner is experiencing.

Assessing Care Partner Distress

Rather than surveying patients to assess care partner stress, dialysis staff should assess care partners directly. The American Medical Association has developed one screening tool to help care partners assess their own distress. It provides scoring instructions and suggests that those who score high on distress consider getting a medical check-up, get caregiving help, and/or join a support group. The tool provides links to multiple resources for caregivers/care partners.

Supporting Care Partners

Care partners often sacrifice their own well-being to care for their loved one who is on dialysis, which can prove to be risky for both. Care partners need to take care of themselves to stay mentally and physically healthy enough to provide care for the dialysis patient. This means eating healthy, exercising regularly, staying connected with friends and family, doing activities they enjoy. In addition, there are many things that dialysis staff can do to help reduce burden for care partners of patients on home dialysis.

• Train competent patients to take primary responsibility for HD tasks with the care partner trained only to provide help if needed.
• Suggest patients check out care partner resources on Home Dialysis Central.
• Use tools to divide tasks, like the Partner Agreement on Tasks for Home Dialysis-PD and the Partner Agreement on Tasks for Home Dialysis-HHD.
• Provide tips from other caregivers:
  • Offer care partners a care partner mentor.
  • Review In Your Own Words—106 Crucial Tips from Fellow Caregivers.

• Encourage patients and care partners to reach out for support:

• Home Dialysis Central Facebook Group (closed group for patients, care partners, professionals)
  • Care-Partners for Home Dialysis (closed group for care partners)
  • Home Dialysis Central message board for HD and PD Care Partners

Dialysis clinics can eliminate caregiver burden by allowing capable, responsible patients to do home HD without a partner. In 2017, the FDA approved the NxStage System One for solo home HD during waking hours—and for decades, some physicians have approved solo HD for individual patients no matter whether dialysis takes place during waking or sleeping hours. Another option that a response to the FHN article suggested was for the Medicare pay for staff-assisted home dialysis like the governments of France, Great Britain, and other countries do.² Some commercial payers do this. Commercial payers evaluate the cost-benefit of services before paying for them. They must be saving money when paying for staff-assisted home dialysis.

1. Suri RS, Larive B, Hall Y, et al. Effects of Frequent Hemodialysis on Perceived Caregiver Burden in the Frequent Hemodialysis Network Trials. Clinical Journal of the American Society of Nephrology : CJASN. 2014;9(5):936-942. Accessed March 26, 2018 ↩︎
2. Cohen LM, Germain MJ. Caregiver Burden and Hemodialysis. Clinical Journal of the American Society of Nephrology : CJASN. 2014;9(5):840-842. Accessed March 26, 2018 ↩︎