Abstract

End-stage renal disease (ESRD) has been considered one of the most burdensome chronic diseases due to the various disruptions it causes in patients’ personal, family, social, leisure, and work activities. Besides attending in-center hemodialysis (IHD) sessions as prescribed, patients have to adhere to different complex health behaviors (e.g., dietary and fluid restrictions, vascular access care, polypharmacy protocols, regular exercise) that are crucial for the quality of life and survival. Several studies have evidenced the negative psychosocial impacts of ESRD and IHD requirements, suggesting that patients experience moderate to severe emotional distress during the treatment course. However, there has been a growing awareness that there are often aspects of the experience of chronic illness that individuals may perceive as positive despite the substantial demands. This study explored whether patients with ESRD undergoing IHD perceived positive life changes associated with their disease experience. A mixed-methods exploratory study was conducted with a purposive sample of 37 patients (23 men; 67.4±12.2 years old; 5.32±3.42 years of schooling) undergoing in-center hemodialysis for an average of 35.9 (±46.8) months. Semi-structured face-to-face interviews were conducted and submitted to content analysis by two independent researchers. The Mann-Whitney U test was performed using SPSS 28.0 for Windows (Armonk, NY: IBM Corp.). Effect sizes were interpreted as small (0.10), medium (0.30), and large (0.50), according to Cohen’s recommendations (1988). Twenty patients (54%) perceived positive psychosocial changes during the treatment course. Three major themes were identified: (i) redefinition of life purpose (reorganization of family, personal, and vocational goals; n = 11); (ii) gains in social support (establishment of meaningful relationships with dialysis fellows and healthcare professionals; n = 8), and (iii) improved family relationships (greater closeness between family members, especially spouses and adult children who act as caregivers; n = 8). There were no statistically significant differences between patients who perceived positive changes (Group 1) and patients who did not (Group 2), regarding age (U = 108.5, p = 0.061; r = 0.308), years of schooling (U = 149, p = 0.537, r = 0.115), and length of time on dialysis (U = 158.5, p = 0.726, r = 0.05); however, a medium effect size was found for age (MdnGroup1= 73y, IQR: 67-79.8; MdnGroup2= 69y, IQR: 50.5-74). The findings suggest that some patients were able to perceive positive life changes associated with their experiences with ESRD and IHD. Sociodemographic characteristics, such as age, can affect this perception, as older patients seem to be able to identify more positive aspects than younger ones. Research is needed to explore predictors, associations, and clinical outcomes of positive growth as a cognitive strategy to cope with ESRD and IHD demands, in order to inform the design of target-based interventions aimed at facilitating disease self-management.

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