Individuals' experiences with end stage renal disease and hemodialysis treatment : implications for quality of life

A descriptive correlational design was used to investigate how individuals living with end stage renal disease (ESRD) and hemodialysis perceive illness and treatment experiences, social supports, adjustment to a new normal, and quality of life. The interrelationships among the key study variables (illness and treatment experiences, social supports, adjustment to a new normal, personal characteristics, overall quality of life) were also examined. The Living with End Stage Renal Disease and Hemodialysis (LESRD-H) model was used as the framework for this study. -- The convenience sample consisted of 112 individuals who were receiving hemodialysis at four centers located in the province of Newfoundland and Labrador. A response rate of 87.5% was achieved. The majority of participants were male (55.4%), living with a spouse (66.1%), and fifty years of age and over (65.2%). The mean age of the sample was 57.9 (SD ± 16.7). Most participants had been receiving hemodialysis for less than three years (79.5%), with a mean time of 21.95 months (SD ± 18.9). As well, most participants had one or more comorbid illnesses (85.7%), and experienced low to moderate illness severity (58%). Data were collected via face-to-face interviews between July, 1998 and February, 1999. -- Study findings indicated that most participants were generally positive about illness and treatment experiences, social supports, and adjustment to a new normal. Participants were most positive about social supports, followed by adjustment to a new normal and illness and treatment experiences, respectively. As well, most participants were quite satisfied with their overall quality of life and each life domain. Specifically, participants were most satisfied with the family, psychological/spiritual, social and economic, and health and functioning domains, respectively. -- Most of the illness and treatment experiences (i.e., physiological stressors, knowledge about the illness and treatment, performance of activities of daily living (ADL), and self-health management) and social support (i.e., family, nursing, physicians, and allied health) variables depicted significant, positive relationships with the adjustment variables (i.e., psychosocial distress and emotional well-being). As well, most experience, support, and adjustment variables depicted significant, positive relationships with overall quality of life, family life, health and functioning, psychological and spiritual well-being, and social and economic conditions. Several personal characteristics (i.e., living arrangement, gender, age, time on dialysis, number of comorbid illnesses, and illness severity) were found to exert variant and minimal effects on the adjustment and quality of life variables. -- Study findings provided partial support for the major assumptions of the LESRD-H model. Consistent with model predictions different combinations of experience and support variables exerted a direct effect on the adjustment variables (i.e., psychosocial distress and emotional well-being), and overall quality of life. In partial support of model predictions, emotional well-being was the dominant predictor of quality of life, and moderated the impact of experience and support variables. Counter to expectations age emerged as the second most important predictor variable for quality of life. -- Study findings provide some support for previous research and suggest that illness and treatment experiences, social supports, and adjustment to a new normal have significant implications for quality of life. However, due to study limitations, generalizability of the findings to other individuals receiving hemodialysis is cautioned. There is a need for future research to develop a greater insight into the impact of similar and different illness and treatment experiences, social supports, and adjustment to a new normal on the overall quality of life of individuals living with ESRD and hemodialysis