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

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 car...

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Autores principales:	Kristina Garne Holm, Amanda Julie Neville, Anna Pierini, Anna Latos Bielenska, Anna Jamry-Dziurla, Clara Cavero-Carbonell, Ester Garne, Jane Clemensen
Formato:	article
Lenguaje:	EN
Publicado:	Frontiers Media S.A. 2021
Materias:	caregiver congenital anomalies child family communication Pediatrics RJ1-570
Acceso en línea:	https://doaj.org/article/aee690e774ad4283ad54dced06c94142
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spelling	oai:doaj.org-article:aee690e774ad4283ad54dced06c941422021-12-01T13:51:42ZThe Voice of Parents of Children With a Congenital Anomaly – A EUROlinkCAT Study2296-236010.3389/fped.2021.654883https://doaj.org/article/aee690e774ad4283ad54dced06c941422021-11-01T00:00:00Zhttps://www.frontiersin.org/articles/10.3389/fped.2021.654883/fullhttps://doaj.org/toc/2296-2360EUROlinkCAT 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.Kristina Garne HolmKristina Garne HolmAmanda Julie NevilleAnna PieriniAnna Latos BielenskaAnna Jamry-DziurlaClara Cavero-CarbonellEster GarneJane ClemensenJane ClemensenJane ClemensenFrontiers Media S.A.articlecaregivercongenital anomalieschildfamilycommunicationPediatricsRJ1-570ENFrontiers in Pediatrics, Vol 9 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	caregiver congenital anomalies child family communication Pediatrics RJ1-570
spellingShingle	caregiver congenital anomalies child family communication Pediatrics RJ1-570 Kristina Garne Holm Kristina Garne Holm Amanda Julie Neville Anna Pierini Anna Latos Bielenska Anna Jamry-Dziurla Clara Cavero-Carbonell Ester Garne Jane Clemensen Jane Clemensen Jane Clemensen The Voice of Parents of Children With a Congenital Anomaly – A EUROlinkCAT Study
description	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.
format	article
author	Kristina Garne Holm Kristina Garne Holm Amanda Julie Neville Anna Pierini Anna Latos Bielenska Anna Jamry-Dziurla Clara Cavero-Carbonell Ester Garne Jane Clemensen Jane Clemensen Jane Clemensen
author_facet	Kristina Garne Holm Kristina Garne Holm Amanda Julie Neville Anna Pierini Anna Latos Bielenska Anna Jamry-Dziurla Clara Cavero-Carbonell Ester Garne Jane Clemensen Jane Clemensen Jane Clemensen
author_sort	Kristina Garne Holm
title	The Voice of Parents of Children With a Congenital Anomaly – A EUROlinkCAT Study
title_short	The Voice of Parents of Children With a Congenital Anomaly – A EUROlinkCAT Study
title_full	The Voice of Parents of Children With a Congenital Anomaly – A EUROlinkCAT Study
title_fullStr	The Voice of Parents of Children With a Congenital Anomaly – A EUROlinkCAT Study
title_full_unstemmed	The Voice of Parents of Children With a Congenital Anomaly – A EUROlinkCAT Study
title_sort	voice of parents of children with a congenital anomaly – a eurolinkcat study
publisher	Frontiers Media S.A.
publishDate	2021
url	https://doaj.org/article/aee690e774ad4283ad54dced06c94142
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The Voice of Parents of Children With a Congenital Anomaly – A EUROlinkCAT Study

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