Caring for Home Dialysis Care Partners

This blog post was made by Beth Witten, MSW, ACSW, LSCSW on May 24, 2018.
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.

Encourage patients and care partners to reach out for support:

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 ↩︎

Comments

  • Bill

    May 27, 2018 1:45 AM

    Don’t wait for the clinic to invite you to attend your husband’s clinic visit. Be assertive and just go to the clinic with your husband!! I haven’t had your experience. My home hemo clinic is very concerned about me. My wife always goes to my clinic with me, and they are glad to see her. The clinic staff tells my wife what I need to do, and she enforces the staff’s directions. I can’t get away with very much!!
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  • Leola Spencer

    May 24, 2018 9:15 PM

    I have been a home hemo dialysis care partner for more than 10 years. I have never had a clinician express concern for my well being. My husband has been associated with his current clinic for about three years, yet the clinic has never once asked for me to come in during any visit. It's my opinion clinics are not concerned about home hemo patients, only those on PD. I am a leukemia survivor who participated in a "high dose chemotherapy clinical trial", more than 18 years ago. I have been unable to care for myself because I spend 5 days a week assisting with my husbands dialysis. Professionals should be concerned about anyone who has been supporting a dialysis patient for more than five consecutive years. Home Dialysis Central is my primary support system.
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    • Dori

      May 30, 2018 9:15 PM

      Leola, I am SO glad that we are able to be of some help and support to you in your challenging journey. And, I truly hope that clinics will read this post and your comment and see how essential it is to support care partners AND dialyzors--not just dialyzors. I suspect that often in-center nurses become home nurses, and they just don't think about the "non-patient." They need to! If you would ever like to share your experiences as a care partner, we would love to have you blog. I know it would open a lot of eyes.
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