ABSTRACT
This study extends scholarship on stigma management communication and social support by exploring the experiences of fathers of children living with a rare health condition, Sturge-Weber Syndrome. Findings from this interview-based interpretive study reveal that fathers assuaged the negative effects of stigma on their children-and courtesy stigma on themselves-by employing buffering strategies, including reactive and preemptive information sharing, preparatory conversations, and support blocking. Further, fathers offered three rationalizations for their blocking behaviors-reasoning that to accept support would violate social norms, as well as privacy expectations and that accepting support was not worth the effort (social exchange). These findings encourage scholars to continue to upend predominant constructions of masculinity and also call to question prevailing assumptions about the relationship between technology and privacy.
Subject(s)
Fathers/psychology , Social Stigma , Social Support , Adaptation, Psychological , Child , Focus Groups , Humans , Interviews as Topic , Male , Masculinity , Rare Diseases/psychology , Sturge-Weber Syndrome/psychologyABSTRACT
The May 2013 release of the new version of the Diagnostic and Statistical Manual of Mental Disorders (DSM V) subsumed Asperger's syndrome under the wider diagnostic label of autism spectrum disorder (ASD). The revision has created much uncertainty in the community affected by this condition. This study uses problematic integration theory and thematic analysis to investigate how participants in Wrong Planet, a large online community associated with autism and Asperger's syndrome, have constructed these uncertainties. The analysis illuminates uncertainties concerning both the likelihood of diagnosis and value of diagnosis, and it details specific issues within these two general areas of uncertainty. The article concludes with both conceptual and practical implications.
