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...
| Main Authors: | , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Frontiers Media S.A.
2021-11-01
|
| Series: | Frontiers in Pediatrics |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/articles/10.3389/fped.2021.654883/full |
| _version_ | 1818722177360330752 |
|---|---|
| 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 |
| collection | DOAJ |
| 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. |
| first_indexed | 2024-12-17T20:50:29Z |
| format | Article |
| id | doaj.art-aee690e774ad4283ad54dced06c94142 |
| institution | Directory Open Access Journal |
| issn | 2296-2360 |
| language | English |
| last_indexed | 2024-12-17T20:50:29Z |
| publishDate | 2021-11-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Pediatrics |
| spelling | doaj.art-aee690e774ad4283ad54dced06c941422022-12-21T21:33:02ZengFrontiers Media S.A.Frontiers in Pediatrics2296-23602021-11-01910.3389/fped.2021.654883654883The Voice of Parents of Children With a Congenital Anomaly – A EUROlinkCAT StudyKristina Garne Holm0Kristina Garne Holm1Amanda Julie Neville2Anna Pierini3Anna Latos Bielenska4Anna Jamry-Dziurla5Clara Cavero-Carbonell6Ester Garne7Jane Clemensen8Jane Clemensen9Jane Clemensen10H.C. Andersen Children's Hospital, Odense University Hospital, Odense, DenmarkDepartment of Clinical Research, Faculty of Health Sciences, University of Southern Denmark, Odense, DenmarkIMER Registry (Emilia Romagna Registry of Birth Defects), Center for Clinical and Epidemiological Research, University of Ferrara and Azienda Ospedaliero-Universitaria di Ferrara, Ferrara, ItalyTuscany Registry of Congenital Defects (RTDC), Institute of Clinical Physiology, National Research Council, Pisa, ItalyPolish Registry of Congenital Malformations, Chair and Department of Medical Genetics, University of Medical Science, Poznan, PolandPolish Registry of Congenital Malformations, Chair and Department of Medical Genetics, University of Medical Science, Poznan, PolandRare Diseases Research Unit, Foundation for the Promotion of Health and Biomedical Research in the Valencian Region, Valencia, SpainPaediatric Department, Hospital Lillebaelt-Kolding, Kolding, DenmarkH.C. Andersen Children's Hospital, Odense University Hospital, Odense, DenmarkDepartment of Clinical Research, Faculty of Health Sciences, University of Southern Denmark, Odense, DenmarkCentre for Innovative Medical Technology, Odense University Hospital, Odense, DenmarkEUROlinkCAT 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.https://www.frontiersin.org/articles/10.3389/fped.2021.654883/fullcaregivercongenital anomalieschildfamilycommunication |
| spellingShingle | 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 Frontiers in Pediatrics caregiver congenital anomalies child family communication |
| title | 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_short | 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 |
| topic | caregiver congenital anomalies child family communication |
| url | https://www.frontiersin.org/articles/10.3389/fped.2021.654883/full |
| work_keys_str_mv | AT kristinagarneholm thevoiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT kristinagarneholm thevoiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT amandajulieneville thevoiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT annapierini thevoiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT annalatosbielenska thevoiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT annajamrydziurla thevoiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT claracaverocarbonell thevoiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT estergarne thevoiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT janeclemensen thevoiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT janeclemensen thevoiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT janeclemensen thevoiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT kristinagarneholm voiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT kristinagarneholm voiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT amandajulieneville voiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT annapierini voiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT annalatosbielenska voiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT annajamrydziurla voiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT claracaverocarbonell voiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT estergarne voiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT janeclemensen voiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT janeclemensen voiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy AT janeclemensen voiceofparentsofchildrenwithacongenitalanomalyaeurolinkcatstudy |