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Keywords:

  • autonomy;
  • caregivers;
  • haemodialysis;
  • interview;
  • qualitative study;
  • suffering

The haemodialysis machine as a lifeline: experiences of suffering from end-stage renal disease

Aim. The aim of this study was to describe patients' experiences of suffering from end-stage renal disease (ESRD).

Rationale. The rationale was to investigate how persons find meaning or make sense of their situation and how they experience suffering. The theoretical basis for the study was to view suffering at three levels. The first level was related to sickness and treatment. The second level was related to the care provided and the third level was related to each person's unique life experience and existence.

Method. Data were collected by interviews focusing on questions concerning daily life, needs, and expectations for the future. A qualitative interpretative content analysis was used. Fifteen patients between the ages of 50–86 participated in the study.

Findings. Two main themes were identified describing these patients suffering. The first theme, `the haemodialysis machine as a lifeline' consisted of three subthemes: `loss of freedom', `dependence on the caregiver', and `disrupted marital, family and social life'. The second theme `alleviation of suffering' consisted of two subthemes: `gaining a sense of existential optimism' and `achieving a sense of personal autonomy'.

Conclusion. This study indicated that, in the lives of patients on haemodialysis, the main areas of suffering were related to loss of freedom expressed as dependence on the haemodialysis machine as a lifeline and, the caregivers. This time-consuming and tiring dependence affected marital, family and social life. Alleviation of suffering could be achieved by accepting dependence on the haemodialysis machine and maintaining autonomy by being seen as an individual by the caregivers.