Undergoing home dialysis in a shared house with other patients of Māori or Pacific ethnicity without medical supervision provided patients with flexibility and support, and enabled them to overcome obstacles to home dialysis, according to a recent study.
New Zealand, where the study was conducted, has long embraced home dialysis. But not all patients are able to or want to do dialysis at home. To help meet their needs, an initiative launched in 2004 to set up community dialysis homes across the country where patients can go to dialyze on their own schedule. The local kidney societies own the homes and manage their day-to-day operations with help from the patients, explained lead author Rachael Walker, PhD, associate professor of Postgraduate Nursing Programs and a nurse practitioner at the Eastern Institute of Technology in Napier, New Zealand. The primary dialysis provider in the area installs the machines and maintains them.
“It’s a way to provide independent hemodialysis close to the patient’s own home, when otherwise they wouldn’t have access to appropriate housing or utilities that would enable them to do home dialysis,” she said. She explained that renters may not be able to install the necessary plumbing, some individuals may lack the room for the machines or supplies, or the costs may be prohibitive. Additionally, many patients may wish to dialyze away from home to maintain their privacy or reduce their family’s exposure to their care.
Walker described a qualitative interview study with 25 patients of Māori or Pacific ethnicity who use the community dialysis houses. The study, which was published in Kidney Medicine, found that patients said the model reduced the burden on their families and offered freedom and flexibility, control of their health, and community support.
“Being able to come whenever you feel like it instead of having to fit into the hospital routine,” was important to one woman in her 40s who participated in the study. “I come whenever it suits me. Those reasons make dialysis a lot more doable and livable and part of your life as opposed to attending a dialysis appointment. It makes it feel like it is just one section of your life rather than a hospital taking over your life.”
People who are Māori or other Pacific ethnicities are disproportionately affected by kidney failure. They are also underrepresented among the ranks of patients on home dialysis, Walker noted. Yet the study found this model worked well for them.
“The community houses, as well as meeting their cultural preferences, allow the patients to achieve best practice by actually enabling them to have more dialysis hours,” she said. “The majority of the patients were doing over 20 hours of dialysis a week.”
Having more flexibility with timing also allowed more than half of the patients to work, which is often impossible for patients on hospital-based dialysis, noted Walker. Additionally, they found the group environment more supportive, less lonely, and they had fewer concerns about safety. More experienced patients often helped less experienced ones, she said.
“The houses provided more psychosocial support and also allowed them to be able to continue employment, and social, cultural, and community responsibilities and preferences,” Walker said.
Jenny Shen, MD, assistant professor of medicine in the Division of Nephrology at the David Geffen School of Medicine at the University of California–Los Angeles, said community home dialysis is a “fascinating and brilliant model.” She said she was not aware of any similar programs in the United States, but that US peritoneal dialysis patients also report flexibility, family burdens, desire to travel, the need to work, and costs as priorities.
“US patients certainly face similar challenges,” Shen said. “Several of my patients have chosen not to do home dialysis specifically because they did not want to burden their families.”
Shen said she thought the community home dialysis model could be useful in the United States not only in rural or remote settings but also in urban ones. Walker agreed, noting that it could be implemented in various types of buildings or adapted to meet the needs of local communities or minority group preferences.
“It’s really a model that could be replicated in many countries, in different populations, in different ways,” Walker said.
One challenge in the United States would be the need to garner support from key stakeholders, said Shen. “In the United States, I imagine a similar model would need the support of a patient-focused charitable society, dialysis providers, and payers,” she said.
The patients interviewed for the study also would like to see the model expanded domestically and internationally to help alleviate burdens to home dialysis and facilitate travel for patients on dialysis.
“[They] identified the need for community houses both across New Zealand and internationally,” Walker said.
The findings were presented at Kidney Week 2019. “A Home Away from Home: Patients’ Experiences of Community Hemodialysis: A Qualitative Interview Study.”