Patients' Perceptions of their Experiences with ESRD and Hemodialysis Treatment

Abstract

A grounded theory methodology was used to explore patients' experiences with end-stage renal disease (ESRD) and hemodialysis. 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 and perceived quality of supports. 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 on 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.

A Thematic Synthesis of the Experiences of Adults Living with Hemodialysis

“…Changing Identity. When commencing hemodialysis, some participants struggled with feelings of vulnerability and their dependency on both dialysis treatment and caregivers (24,26,(28)(29)(30)(31)(32)(35)(36)(37)(38)(39)(40). The "assembly line" (26) nature of dialysis and lack of interest shown by staff could result in a loss of personal identity (24,26,28,35).…”

“…Participants expressed frustration, because dialysis required relocation or reduced the time and energy available to care for family members or carry out family duties (27)(28)(29)35). Some participants were now dependent on family for care or assistance and worried that they had become a burden to them (28)(29)(30)37,38). Participants who thought their dialysis dependence had restricted their families' activities, such as holidays, also reported guilt (29,30,35).…”

“…Some participants were now dependent on family for care or assistance and worried that they had become a burden to them (28)(29)(30)37,38). Participants who thought their dialysis dependence had restricted their families' activities, such as holidays, also reported guilt (29,30,35).…”

Patients' experiences of peritoneal dialysis at home: a phenomenological approach

“…They wish to be independent and normal (4)(5) . Some studies described the patients' need to look and feel more healthy and more like other people despite the disease and long term treatment (7)(8)11,20) . At this point, patients are supposed to discover the extent of the limitations imposed by the illness, reevaluating life projects and setting new goals.…”

“…At this point, patients are supposed to discover the extent of the limitations imposed by the illness, reevaluating life projects and setting new goals. Some authors considered that patients could overcome those difficulties by means of educational and professional support, aiming for the maintenance of their autonomy (7)(8)(19)(20) . (11) .…”