Courtesy Stigma and Social Support: An Exploration of Fathers’ Buffering Strategies and Blocking Rationalizations

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.

Children with a rare congenital genetic disorder: a systematic review of parent experiences

“…Parents often spent considerable time explaining their child's condition when meeting new people in settings such as playgrounds, shopping centres, or schools, an information task some parents experienced as demanding [ 28 , 45 , 48 , 49 , 53 , 57 ]. Nevertheless, they felt responsible for raising awareness about the rare condition [ 45 , 57 ], even when it felt difficult to explain to other people what their daily life looked like [ 31 , 34 , 35 ]. The challenge of explaining could be even greater if the child’s diagnosis was not visible to others, since caregivers could struggle to explain the child’s needs for special support [ 39 , 43 ].…”

“…Social experiences among strangers and a general lack of knowledge in society could be demanding due to staring or comments if the child looked different or behaved differently [ 28 , 37 , 38 , 41 , 43 , 44 , 46 , 49 , 50 , 57 ]. Questions from others and/or a need to explain the difference was experienced as demanding by some parents [ 45 ], and some used preemptive and active strategies, hoping to fend off questions and stares [ 57 ]. Parents also described anticipated or experienced social stigma and taboo as challenging [ 44 , 46 , 49 , 50 , 57 ].…”

“…Questions from others and/or a need to explain the difference was experienced as demanding by some parents [ 45 ], and some used preemptive and active strategies, hoping to fend off questions and stares [ 57 ]. Parents also described anticipated or experienced social stigma and taboo as challenging [ 44 , 46 , 49 , 50 , 57 ].…”

“…During adolescence and early adulthood, parents mentioned how adherence issues to treatment could reduce the child’s long-term independence, and rise concerns about their child's ability to manage their own medical needs [ 33 ], possibly also affecting the child-parent relationship. In social settings, parents felt the need to shield their child from other people’s attitudes, fearing that the child’s self-perceptions could be negatively affected if people reacted to the child’s behaviour or the rare disease [ 50 , 57 ].…”

“…Demands associated with the rare condition led parents to feel torn between caring for their child and work obligations [ 27 , 47 , 49 , 55 ]. They felt that they had to inform the work place about their situation [ 57 ] or seek a different work situation [ 29 , 45 , 54 , 59 ], when the child’s care was described as a part-time job in itself [ 27 , 59 ]. Additional care needs also led parents to struggle with finding time for personal and/or social activities [ 30 , 46 , 48 , 55 ], and complicated the preservation of social relations outside the family [ 32 , 39 , 54 , 56 ].…”