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

Kristina Garne Holm; Amanda Julie Neville; Anna Pierini; Anna Latos Bielenska; Anna Jamry-Dziurla; Clara Cavero-Carbonell; Ester Garne; Jane Clemensen

doi:10.3389/fped.2021.654883

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

Front Pediatr. 2021 Nov 29:9:654883. doi: 10.3389/fped.2021.654883. eCollection 2021.

Authors

Kristina Garne Holm^{1

2}, Amanda Julie Neville³, Anna Pierini⁴, Anna Latos Bielenska⁵, Anna Jamry-Dziurla⁵, Clara Cavero-Carbonell⁶, Ester Garne⁷, Jane Clemensen^{1

2

8}

Affiliations

¹ H.C. Andersen Children's Hospital, Odense University Hospital, Odense, Denmark.
² Department of Clinical Research, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark.
³ IMER Registry (Emilia Romagna Registry of Birth Defects), Center for Clinical and Epidemiological Research, University of Ferrara and Azienda Ospedaliero-Universitaria di Ferrara, Ferrara, Italy.
⁴ Tuscany Registry of Congenital Defects (RTDC), Institute of Clinical Physiology, National Research Council, Pisa, Italy.
⁵ Polish Registry of Congenital Malformations, Chair and Department of Medical Genetics, University of Medical Science, Poznan, Poland.
⁶ Rare Diseases Research Unit, Foundation for the Promotion of Health and Biomedical Research in the Valencian Region, Valencia, Spain.
⁷ Paediatric Department, Hospital Lillebaelt-Kolding, Kolding, Denmark.
⁸ Centre for Innovative Medical Technology, Odense University Hospital, Odense, Denmark.

Abstract

EUROlinkCAT aims to investigate the health and educational outcomes of children with congenital anomalies for the first 10 years of their lives. We also aim to facilitate the development of a more reciprocal relationship between families with children with congenital anomalies, health and social care professionals, and researchers by conducting focus groups. The aim of the focus groups and parent interviews was to investigate 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 two caregivers were conducted in four European countries. We found that parents request more positive information with a focus on quality of life and what the children can achieve rather than solely on the negative aspects and limitations of the congenital anomaly. Some parents also highlighted discrepancies between the family's need for support and the lack of support received from the local authority. Finally, it was challenging for the parents to address specific research priorities. Future research should therefore focus on the potential of a child with a congenital anomaly.

Keywords: caregiver; child; communication; congenital anomalies; family.