An exploration of perceptions of social support among women with interstitial cystitis/bladder pain syndrome

Background/Significance: Interstitial cystitis/bladder pain syndrome (IC/BPS) is a chronic condition with a potential to exert substantial influence on quality of life. Social support has been found to be positively associated with improved health outcomes in women with IC/BPS. More recent quantitative research, however, revealed a negative effect of social support on health-related quality of life (HRQOL). Purpose: The purpose of this study was to inform this contradictory quantitative evidence through a qualitative exploration of how women living with IC/BPS perceive social support. Methods: 651 women living with IC/BPS responded to a web-based survey. In addition to validated scales measuring HRQOL and social support, this survey contained an open-ended question inquiring about perceptions of social support as it relates to living with IC/BPS. An inductive, conventional content analysis approach to coding and thematic development was used to analyze these responses. Results: Preliminary emergent codes include isolation, withdrawal, and inability to meet the needs of others. Several women reported feelings of being purposefully isolated by others due to misunderstandings of their disease. Further responses indicate a strong sense of stigmatization, compelling participants to withdraw socially. Additionally, a perceived inability to meet the needs of others was a significant barrier to endorsing social support as typically measured quantitatively. Discussion/Conclusions: Women living with IC/BPS report experiencing a lack of effective social support from those around them. Additionally, this study highlights the ways in which qualitative data can inform quantitative data, illuminating the complexities of lived experience often not fully captured in quantitative inquiry alone.