The marital context of end-stage renal disease: illness intrusiveness and perceived changes in family environment

End-stage renal disease (ESRD) is associated with illness-induced disruptions (i.e. illness intrusiveness) that challenge patients and their families to accommodate and adapt. We advance previous research in ESRD by examining the extent to which illness intrusiveness extends to marital, non-marital, and family life among patients and their spouses. We also investigate whether gender and mode of renal replacement therapy moderate these effects. A sample of 19 ESRD patients and their spouses completed the Illness Intrusiveness Ratings Scale and the Family Environment Scale (FES) (completed with reference to two time frames, currently and before ESRD) in structured individual interviews. As hypothesized, ESRD patients reported significantly higher illness intrusiveness than their spouses, but this discrepancy was greater in relation to aspects of non-marital as compared to marital life. Significant moderating effects were observed for gender on the FES Relationship subscale and mode of renal replacement on the FES Personal Growth subscale. Spouses reported significantly more family emphasis on norms and the regulation of family members' behavior (FES System Maintenance) than patients. A pattern of significant correlations linked patient ratings of illness intrusiveness with both premorbid and current family environment. The pattern of findings is consistent with previous clinical reports that women and spouses are more likely than their male and patient counterparts to shoulder much of the burden of adapting family environment to accommodate life with ESRD and renal replacement therapy.