What is a "balanced" description? Insight from parents of individuals with down syndrome

Abstract

Genetic counselors and parents of individuals with Down syndrome (DS) agree that descriptions of DS in prenatal settings should be "balanced." However, there is no consensus regarding what constitutes a balanced description of DS. A survey was designed in collaboration with, and sent to the membership of, the British Columbia based Lower Mainland Down Syndrome Society (N = 260). Respondents were asked how they would describe DS to a couple who have just received a prenatal diagnosis of the condition. We rated the descriptions provided for positivity/negativity. Completed surveys were returned by 101 members, the majority of whom were Caucasian (87%) and female (79%). Participants' descriptions of DS ranged from entirely positive (n = 5; 10%) to entirely negative (n = 4; 7%) in nature. Deriving a description of DS that would broadly be perceived as "balanced" may be impossible. Instead, it may be more important to explore the range of possibilities regarding the family experience of raising a child with DS using nonjudgmental terminology, and to help families evaluate these possibilities in the context of their own values, coping strategies, and support networks.