Abstract
The aim of this thesis was to describe and to characterize patients experiences of suffering from end-stage renal disease. Although suffering is assumed to be an individually experienced phenomenon, the interest was to identify common themes that would contribute to an understanding of what it means to undergo maintenance haemodialysis treatment. Thus, the first study investigated how patients on maintenance haemodialysis experienced changes in their life situation and the second study investigated how these patients experienced the care that they received.
The design of both studies was exploratory and descriptive based on qualitative data. The data collected in the studies consisted of interviews with haemodialysis patients (41) from three hospitals in Sweden. In both studies qualitative content analysis and descriptive interpretation was used in the analysis.
In the first study (I), qualitative content analysis and descriptive interpretation was used in order to generate categories that could conceptually relate to the concept of suffering. The units of analysis were transformed into two main themes. The first theme the haemodialysis machine as a lifeline consisted of three sub-themes, loss of freedom, dependence on the caregiver and, disrupted marital, family and social life. The second theme alleviation of suffering consisted of two sub-themes, gaining a sense of existential optimism and, achieving a sense of personal autonom. In study II, qualitative content analysis and descriptive interpretation was used in order to create themes that could describe the patient s experiences of their lifesituation and care. Three main themes were identified, not finding space for living, feelings evoked in the caring situation and, attempting to manage a restricted life. The theme not finding space for living consisted of two sub-themes, struggling with time-consuming care and, feeling that life is restricted. The theme feelings evoked in the caring situation consisted of two sub-themes, sense of emotional distance and, feeling vulnerable.
Conclusion: The main areas of suffering were related to loss of freedom, expressed as a dependence on the haemodialysis machine and the caregivers and, that alleviation of suffering could be achieved by accepting the haemodialysis procedure and by being seen as an individual by the caregivers. The patients also expressed that encroachment of time and space were important existential dimensions and that the caregivers were not aware of this. It appears that the patient s experience of an emotional distance in relationship with their caregivers seemed to be a problem.
