Article Title: A qualitative exploration of mothers’ and fathers’ experiences of having a child with Klinefelter syndrome and the process of reaching this diagnosis
Authors: Elyssia Bourke, Pamela Snow, Amy Herlihy, David Amor and Sylvia Metcalfe
Date of Publication: May 22, 2013
“The conclusions from this study were that parents’ experiences of having a child with KS and receiving a diagnosis were complex and multifaceted. This experience was shaped by the timing of when the diagnosis was received, who provided the diagnosis, what information was provided from health-care professionals and that which parents may have encountered on the internet. The long-term experiences for parents were also impacted by the level of support they received. These findings have implications for the process by which KS is recognized by the health-care community and supports available for families.”