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
In this essay, the author identifies the theme of (in)visibility permeating her research on fathers of children with a rare genetic condition, Sturge-Weber syndrome. The tension between physical visibility of the condition and lack of awareness is explored, alongside issues of (in)visibility in coping and support-seeking strategies of fathers. Finally, the author examines her own experiences in the research process through the lens of (in)visibility, in both managing her own emotions and exploring her roles as a researcher, an aunt, and a public intellectual.
