The association between shame and friendship in individuals with exstrophy-epispadias complex

As the exstrophy-epispadias complex (EEC) has not only physical, but also complex psychological consequences, further research is required to understand these in greater detail. This study aimed to test hypotheses concerning the association between shame, disclosure, friendship quality and life satisfaction among individuals with EEC, in order to identify specific areas for potential patient support.

During the pre-registered study, data were collected online and anonymously via an Instagram account and four support groups in Germany and Switzerland. This cross-sectional survey incorporated the "Chronic Illness-related Shame Scale", four subscales of the "McGill Friendship Questionnaire", and the "Short Scale to Measure General Life Satisfaction", with minor modifications. The disclosure scale was self-created and tested using exploratory factor analysis. The reliability of the scales ranged from acceptable to very good. For hypothesis testing, Pearson correlation and linear regressions were performed (α = 0.05). To examine sex differences, t-tests were conducted.

106 adults (47 men, 58 women, 1 divers or no answer) completed the questionnaire. On average, shame was reported in the lower to mid-range of the scale, while disclosure, friendship quality, and life satisfaction were reported at moderate to high levels. In line with the hypotheses, the analyses revealed significant negative correlations between EEC-related shame and social support and intimacy within the best friendship, life satisfaction, and the propensity to disclose EEC with approach goals, thus indicating an association between lower levels of shame and more positive social factors. Additionally, in affected friendships, a positive correlation between disclosure with approach goals and positive feelings, social support, and reliable alliance was found. Contrary to expectations, men reported a marginally insignificant tendency to experience more EEC-related shame than women. Women scored higher than men in terms of friendship quality and disclosure.

In EEC, the level of shame and disclosure appears to be important in friendships. Furthermore, shame seems to play an important role in life satisfaction. Men, in particular, may be vulnerable in relation to most of these constructs. The results are largely consistent with previous research. Limitations of this study are especially the predominance of support groups and the underrepresentation of men. The findings suggest the need for practical support.

The study emphasized the importance of psychosocial factors in EEC. Future research should continue to focus on psychosocial aspects of EEC, with a particular emphasis on health services research.