Challenging and Facilitating Factors When Coping with the News of a Newborn’s Down Syndrome Diagnosis: Perceptions of Activist Israeli Mothers

Studies have shown that healthcare professionals (HP) play a significant role in parents’ experience when informed of the birth of a child with Down Syndrome (DS). Past studies have focused on faith dilemmas of religious mothers that were informed that their child was born with DS and on understanding how faith was a source of emotional support for them. Studies that focus on religious activist mothers are scarce. We utilized a qualitative methodology to explore the experiences of Jewish mothers who are religious and activists. Semistructured interviews and focus groups were conducted with 17 religious Jewish mothers of children with DS, who participated in an activist, self-support group. The data were analyzed using interpretative phenomenological analysis (IPA). Most mothers felt unsupported by the HP although a few mentioned being congratulated on the birth and empowered by a physician who focused on their child’s potential to develop. The mothers appreciated when HPs considered their opinions and values. They shared the common goal of changing the existing pathological, statistics-based discourse concerning children with DS. The study reinforces the important role of HP and policymakers’ in collaborating with parents and their support groups early in the diagnostic stage.