The Voice of Parents of Children With a Congenital Anomaly - A EUROlinkCAT Study
Survival of children with congenital anomalies has been improving over time. With this improving survival, more families are caring for infants and children with complex care needs and are facing many everyday challenges. The parents have a need for information and support to empower them to enable their children to reach their full potential.
The aim of this particular study within EUROlinkCAT was to investigate parents’ experiences of having a child with specific congenital anomalies, namely a heart defect requiring surgery, cleft lip, spina bifida or Down syndrome, and to identify their views about the information and support provided to them concerning their child’s anomaly.
The study was qualitative in nature, holding seven interviews with 12 parents and eight focus groups with 58 parents and two caregivers in four European countries. Data were analysed using systematic text condensation.
The parents expressed a desire for more positive information regarding their children, with a focus on quality of life and what the children can achieve rather than solely focusing on negative aspects and limitations brought about by their anomalies. Some parents also highlighted the lack of support provided by their local authority.
The parents of children with congenital anomalies were very concerned about the quality of life and cognitive and physical achievements of their children. They felt caught between seeking the best possibilities for their child and the limited resources provided by the public system. Future research should focus on the potential of children with congenital anomalies and the dissemination of related research ought to include the positive aspects of the opportunities for these children.
Submitted version of paper prior to publication