Patients' perceptions of their experiences with end-stage renal disease (ESRD) and hemodialysis treatment

To explore patients' perceptions of their experiences with ESRD and hemodialysis treatment, 71 interviews were conducted with 36 adult patients established on dialysis. The sample was equally divided by gender, with 78% over 50 years (M = 57) and most on dialysis for ≤ 3 years (72%). Using a grounded theory methodology and a constant comparative method of analysis, a theoretical model was developed which suggested that patients' perceptions of their experience revolved around three constructs. These include redefinition of self, quality of supports, and meanings of illness and treatment and are linked by "critical turning points" which facilitate or impede quality outcomes. The emerging theory suggests that a "new sense of self" is an emotional/psychological state that fluctuates with the evolving meanings of illness and treatment (acute/chronic illness, treatment effects) and perceived quality of supports (health care providers, family and friends, dialysis peers, dialysis environment). The findings indicate that when confronted with this new way of being-in-the-world, the individual becomes cognizant of an uncertain future, continued dependence on life-sustaining technology and the expertise of health care providers, and the demands upon and sacrifices incurred by significant others. All aspects of patients' experiences with ESRD and hemodialysis treatment must be considered if health care providers are to facilitate positive health outcomes. -- Conclusion: Patients' perceptions of their experiences on hemodialysis revolve around the psychological adjustment to illness chronicity, the quality of supports (particularly in facilitating this adjustment), acceptance of treatment regimes, and the tension between desired and expected, and the actual treatment outcomes. The perceived experience may influence the quality of outcomes. -- Key Words: hemodialysis; grounded theory methodology; quality of outcomes; patients' perceptions