The Voice of Parents of Children With a Congenital Anomaly - A EUROlinkCAT Study

EUROlinkCAT aims to investigate the health and educational outcomes of childrenwith congenital anomalies for the first 10 years of their lives. We also aim to facilitatethe development of a more reciprocal relationship between families with childrenwith congenital anomalies, health and social care professionals, and researchers byconducting focus groups. The aim of the focus groups and parent interviews was toinvestigate parental experiences of having a child with a heart defect requiring surgery,cleft lip, spina bifida or Down Syndrome and to identify their research priorities. In total,seven interviews with 12 parents and eight focus groups with 58 parents and twocaregivers were conducted in four European countries. We found that parents requestmore positive information with a focus on quality of life and what the children can achieverather than solely on the negative aspects and limitations of the congenital anomaly.Some parents also highlighted discrepancies between the family's need for support andthe lack of support received from the local authority. Finally, it was challenging for theparents to address specific research priorities. Future research should therefore focuson the potential of a child with a congenital anomaly.