Exploring Self-Management Interventions to Improve Life Functioning on Dialysis

According to the National Institute of Diabetes and Digestive and Kidney Diseases, there are nearly 808,000 people in the United States who are living with end stage kidney disease1 or kidney failure. The traditional approach to caring for these patients emphasizes the medical management of the disease (laboratory tests, medication management, adherence). A newer approach is researching more person-centered care, and a key component of this effort is supporting a person's ability to self-manage three distinct tasks: illness-related tasks, emotional management, and life participation. The Standardised Outcomes in Nephrology initiative identified life participation as being critically important for persons in/with kidney failure.2–4 The authors of “Self-Management Interventions for Facilitating Life Participation for Persons with Kidney Failure: A Systematic Review,”5 published in this issue of CJASN, analyzed previous interventional studies from several scientific databases to identify interventions that are designed to support life participation. This review identified 22,667 potential studies, of which there were 53 that had interventions specific to life participation. These studies were mainly conducted in the United States and Iran from 1993 to 2022. Most of the interventions were provided by nurses and nurse practitioners in a hospital setting. From these 53 studies, the authors determined that there are eight areas that life-participation activities can be grouped into: activities of daily living, work and school life, meaningful occupations, leisure activities, mobility and travel, interpersonal relationships, role functioning, and social participation. From my perspective as a patient undergoing dialysis, this is the best thing that came out of this analysis. The conclusion of this analysis is that there is a “need to develop interventions within this highly relevant domain through high-quality and open development processes and trials”5 and that this could lead to identifying what would be most effective in supporting patients. This is a logical approach and one that could provide valuable insights into what is meaningful to patients in kidney failure. I have been living with kidney failure for 8 years and am fortunate to have a dialysis nephrologist who takes an active approach to my health and well-being. When I first started dialysis in-center, I was so ill, and my quality of life was nonexistent. I could not play with my young daughter; I could not work and spent a significant amount of time in the hospital. My nephrologist has been providing person-centered care from the very beginning. She sees me as a patient undergoing dialysis, but also as a wife and a mother and a person with responsibilities and interests and hobbies. I have a say in my care, and she addresses any concerns that I have, and she does not apply a cookie-cutter approach. Having individualized care motivates me to take on more of it myself and has been instrumental in helping me regain my independence. I did a considerable amount of research before starting dialysis and decided that home dialysis was the best option for me and my family and have been doing nocturnal home hemodialysis for 7½ years. Not everyone is comfortable with the idea of dialyzing at home, but I think every kidney patient should be informed about it as a treatment option. I realize how lucky I am. I have had conversations with fellow patients undergoing dialysis, and there are some horror stories out there about the care they receive. I have had some of my own as well. Patients are treated like they are a problem to be solved, and they do not have open lines of communication with their health care professionals. There is a dynamic in the dialysis community where patients are often treated like they are not capable of self-care. How depressing and unmotivating would it be to always be told you are not capable? There was so much variability within the 53 studies that it is difficult to derive actionable steps. I think patients need empathy and validation of their experience from their care providers, most importantly from their doctors. I encourage readers, both health care providers and patients, to advocate for and actively engage in person-centered care initiatives.