New research published in the Clinical Journal of the American Society of Nephrology revealed that for patients with CKD, interactions with individual providers and with the wider health system, combined with patients’ own struggle to understand their illness, can take a large emotional toll.
“The take-home message is that illness and the care they receive often take a large emotional toll on patients. Not only do they struggle to make meaning of their illness, but must contend with providers and health systems that are largely oblivious to their challenges,” Ann O’Hare, MD, MA, from the University of Washington and lead author of the study, told Healio Nephrology. “This can make patients feel isolated, mistrustful, alienated and even abandoned at times of greatest need. Addressing the root cause of these negative emotions could help to identify opportunities to improve patients’ experiences of illness and their interactions with providers and health systems.”
The investigators interviewed 27 patients with late stage CKD, and three themes related to patients’ emotional experience of care and illness emerged. First, patients experienced mistrust, abandonment, isolation and/or alienation when they felt providers lacked insight into patients’ experience of illness and treatment. Second, patients had similar feelings related to how care was organized. Third, patients struggled to understand their illness experience, and sometimes even blamed themselves.
For patients with CKD, interactions with individual providers and with the wider health system, combined with patients’ own struggle to understand their illness, can take a large emotional toll
“Improving education and health literacy among patients with kidney disease and building communication skills among nephrology providers will go some way toward improving communication between patients and providers,” the investigators wrote. “However, in complex and fragmented health systems, our findings suggest that improving communication will require that providers gain a stronger appreciation of the totality of patients’ interactions with other providers and the health system and how these interface with patients’ own struggle to make meaning of their illness.” – by Jake Scott
O’Hare reports receiving speaking honoraria from Fresenius Medical Care, Dialysis Clinics Inc., The Japanese Society for Dialysis and Transplantation, the University of Alabama and the University of Pennsylvania. Please see the study for all other authors’ relevant financial disclosures.