“I Wish Someone Had Told Me That Could Happen”: A Thematic Analysis of Patients’ Unexpected Experiences With End-Stage Kidney Disease Treatment

Abstract

Background: Preparedness regarding prognosis and treatment options enables patients to cope with uncertainties, make value-based treatment decisions, and set treatment goals. Yet, little is known about the expectedness of end-stage kidney disease (ESKD) patients’ treatment experiences beyond their desire for better treatment education. Objective: To describe unexpected adverse treatment experiences among ESKD patients. Method: The authors conducted 7 focus groups with 55 dialysis patients and living-donor kidney transplantation recipients receiving medical care in Baltimore, Maryland. Data were analyzed thematically. Themes present in different treatment groups were highlighted to provide insight into common experiences. Results: The authors identified 5 themes: (1) psychological reactions, (2) constrained freedom of choice, (3) treatment delivery and logistics, (4) morbidity, and (5) finances. Conclusion: Patients were unprepared for nonclinical, logistical, and clinical aspects of ESKD treatment. The need for providers’ use of tailored preparatory techniques and the development of pretreatment interventions to help patients know what to expect from and feel psychologically prepared for treatment, particularly with respect to nonclinical implications, is critical. These efforts have great potential to improve patients’ treatment experiences.

Lived Experiences of Patients with Chronic Kidney Disease Receiving Hemodialysis in Felege Hiwot Comprehensive Specialized Hospital, Northwest Ethiopia

“…In the current study, participants clearly described their immense sense of loss on multiple dimensions. This result consistent with studies conducted in Nigeria [ 18 ], Iran [ 22 ], Francisco [ 23 ], Georgia [ 4 ], and the USA [ 19 ], with those living with CKD, described their lives as being filled with pain and suffering, loss of self, and loss of independence.…”

“…Self-image, stigma, and suicidal ideations are all considered within the rubric of mental distress by the participants. This complex and far-reaching result was consistent with the studies conducted in India [ 31 ] Nigeria [ 18 ], Iran [ 22 ], Greece [ 32 ], and the USA [ 19 ], where participants described feelings of isolation in the society, physical limitations, and fears of poor clinical results contributing to feelings of sadness, depression, and despair. Further, the lifelong (chronic) dimension of CKD along with the uncertainties with regard to the ability to continue treatments and afford the medications impacted significantly on psychological wellbeing.…”

“…According to this study, participants frequently experience a shortage of filtered water and repeated breakdowns of the dialysis machines due to frequent electrical power interruptions which are similarly reported in studies from Nigeria [ 18 ] and the USA [ 19 ].…”

“…This finding is similar to the study conducted in Nigeria [ 18 ], where financial constraints were mentioned as a major barrier to service adherence. In addition, participants spoke of the consumption of assets to pay for their treatments, which is also reported in studies conducted in Nigeria [ 18 ] and the USA [ 19 ].…”

Preferences for and Experiences of Shared and Informed Decision Making Among Patients Choosing Kidney Replacement Therapies in Nephrology Care

“… 38 , 39 , 40 However, studies of patients who transition to kidney failure have demonstrated that patients and families believe that people with kidney disease should be informed about these aspects of treatments before developing kidney failure. 41 , 42 Our findings suggest that patient satisfaction may not accurately capture the quality of SDM, and assessments of SDM interventions may benefit from more precise measures, such as the patient-reported measure CollaboRATE. 28 …”