Exploring the Lived Experiences of Family Caregivers Who Provided End-of-Life Care to Hemodialysis Patients: A Phenomenological Study in Iran

Abstract

Background: Providing end-of-life care involves offering care and support to patients with advanced incurable diseases who are in their final stages of life. Family caregivers of these patients often dedicate substantial time to their care, which can significantly impact their physical and psychological well-being. Objectives: This study aimed to explore the lived experiences of family caregivers providing care for hemodialysis patients at the end of life. Methods: This qualitative study employed a descriptive phenomenological design. To ensure information-rich samples, nine family caregivers of hemodialysis patients at the end of life were selected from two dialysis centers using a purposive sampling method. Data collection involved conducting in-depth, semi-structured, face-to-face interviews, which were digitally recorded for accuracy. Analysis was conducted using van Kaam's seven-step method. Results: Nine family caregivers, including 3 men and 6 women, participated in this study. They had a mean age of 59.44 years, and on average, they had been caring for their patients for 6.33 years. Four main themes and twelve sub-themes emerged from the analysis of the interviews. These themes, as well as their sub-themes, were: (1) complex care (individual-social struggles and healthcare hurdles); (2) care as an opportunity for skill development (experience of spirituality and development of mental capacity); (3) care as a chain of caregivers (ignorance of the caregiver, lifestyle adjustments, persistent concerns, questioning circumstances, and mental strain due to prolonged care); and (4) moments of misfortune (emotional exhaustion from witnessing the patient's physical deterioration, a sense of helplessness regarding the patient's mental and cognitive state, and a sense of helplessness regarding the patient's mental and cognitive state). Conclusions: Caregivers expressed a spectrum of both positive and negative experiences. While some viewed their role as fostering intellectual growth and development, others described feelings of confinement, entrapment, and sacrifice. Further comprehensive research is required to determine the factors contributing to this diversity of perspectives.