Living in the shadow of shame and stigma: Lived experience of mothers with deaf children

Abstract

Congenital deafness is one of the most common childhood disorders and every year many children are born with permanent hearing loss. The present study was carried out to understand the experience of mothers with deaf children. This study was conducted with a qualitative approach. The participants were 35 mothers of children with congenital deafness who were selected by purposive sampling. The data was collected through semi-structured in-depth interviews and analyzed using thematic analysis introduced by Braun and Clarke. Data analysis revealed 3 themes and 9 sub-themes including social stigma (prying eyes, pity aversion, feeling of discrimination, taunt from people), internalized stigma (feeling of inferiority, feeling of shame and embarrassment), and reaction to stigma (turning to concealment, cautious disclosure, and marginalization). Shame and stigma were the major experiences of Iranian mothers of deaf children that shadowed their lives. These experiences lead mainly to ineffective coping mechanisms such as avoidance of using hearing aids and concealment of the child's hearing loss. In addition, to cope with perceived stigma, mothers isolate and marginalize themselves and pursue secrecy strategies. Therefore, our findings are important for health professionals who are working with families having children with hearing loss. They need to aware of the problems faced by the families and should advocate necessary support.