Individuals' perceptions of end stage renal disease and hemodialysis and its association with adjustment and health-related quality of life: a longitudinal study

A descriptive, correlational study with a repeated measures design was used to monitor changes in individual's perceptions of end stage renal disease (ESRD) and hemodialysis at study entry and at approximately seven months follow-up. A secondary purpose was to examine health-related quality of life (HRQOL) of hemodialysis patients at the follow-up period. Interrelationships among illness and treatment experiences, social supports, adjustment to a new normal, critical events, demographic variables, and medical risk factors were also examined. The Living with End Stage Renal Disease and Hemodialysis (LESRD - H) model was used as the framework for the study. -- The non-probability, convenience sample consisted of 60 individuals who were undergoing in-center chronic hemodialysis in the province of Newfoundland and Labrador. The majority of participants were male (51.7%), living with a spouse (60%), and over fifty years of age (68.3%). The mean time on hemodialysis at follow-up was 23.2 months. Most participants had one or more co-morbid illness (61.7%). -- Study findings indicated that most participants were generally positive about the illness and treatment experiences, social supports, and adjustment to a new normal at both time periods. Participants were most positive about their social supports and least positive about the illness and treatment experiences at both baseline and follow-up. With the exception of a significant decrease in satisfaction with support from family and involvement in self-health management, no significant differences were noted in aspects of the illness and treatment experience (i.e., frequency of physiological stressors, performance of activities of daily living [ADL], or confidence with knowledge), social supports (i.e., satisfaction with nurses, physicians, and allied health professional), or adjustment (i.e., emotional well-being and psychosocial distress) between the two time periods. -- Study findings related to HRQOL indicated that most participants experienced substantial limitations in physical health; however, they enjoyed excellent mental health. The most problematic areas of functioning were perceived general health, vitality, role functioning limitations due to physical health, and physical functioning. -- Select aspects of the illness and treatment experience and social support variables were significantly, and positively, correlated with emotional well-being and psychosocial distress at both baseline and follow-up, however, the relationships were inconsistent between the time periods. Satisfaction with support from family depicted a significant, inverse correlation with psychosocial distress at follow-up. Only select aspects of the illness and treatment experiences (i.e., physiological stressors and performance of ADL) and adjustment (i.e., emotional well-being) were found to influence physical health. None of the social support variables exerted any influence on physical health. -- As well, select aspects of the illness and treatment experience, support, and adjustment exerted a significant, positive relationship with mental health. Demographic and medical risk factors exerted variant and minimal effects on adjustment and HRQOL. -- The study findings provide limited support for the assumptions inherent in the LESRD-H model. It is postulated that illness and treatment and social support exert a direct effect on adjustment. Counter to model assumptions, several of the illness and treatment and support variables depicted inconsistent relationships with adjustment between baseline and follow-up. As proposed in the model, the direct effects of illness and treatment experiences on physical and mental health is partially support by the study findings. Counter to model assumptions, social support variables exerted no direct effect on physical health, and minimal effect on mental health. The findings provide partial support for the influence of adjustment on HRQOL. Most adjustment variables were found to exert a significant, positive relationship on physical and mental health, with the greatest influence on mental health. Critical events exerted minimal effects on adjustment or HRQOL, however, the correlations were consistent with the assumptions in the model (i.e., better physical and mental health with positive events and worse physical and mental health with negative events). -- Although study findings are supported for the most part by previous research, the ability to generalize the findings are limited due to the small sample size and the inconsistencies noted in relationships between baseline and follow-up. As well, limited comparable research was available for comparison. There is an obvious need for further longitudinal, repeated measures research that can provide a better understanding of how patients on hemodialysis adjust over longer periods of time. Further research using the LESRD - H with a larger, more diverse population has been completed by the research team and the data are currently being analyzed