Information needs of parents of children with congenital anomalies across Europe: a EUROlinkCAT survey
Por:
Marcus E, Latos-Bielenska A, Jamry-Dziurla A, Barišic I, Cavero-Carbonell C, Den Hond E, Garne E, Genard L, Santos AJ, Lutke L, Matias Dias C, Neergaard Pedersen C, Neville AJ, Niemann A, Odak L, Pierini A, Rico J, Rissmann A, Rankin J and Morris JK
Publicada:
12 nov 2022
Ahead of Print:
12 nov 2022
Categoría:
Pediatrics, perinatology and child health
Resumen:
Background Parents of children who have a congenital anomaly can experience significant worry about their child's health. Access to clear, helpful, and trustworthy information can provide a valuable source of support. In this study the aim was to explore the information needs of parents/carers of children with congenital anomalies across Europe. Method A cross-sectional online survey was developed in nine languages to measure parents' information needs, including: (1) the 'helpfulness'/'trustworthiness' of information received from eight relevant sources, and (2) overall satisfaction with information received. Parents/carers of children (0-10 years) with cleft lip, spina bifida, congenital heart defect [CHD] requiring surgery, and/or Down syndrome were recruited online via relevant organisations in 10 European countries from March-July 2021. Quantitative analyses using multivariable logistic regressions were performed. Results One thousand seventy parents/carers of children with a cleft lip (n = 247), spina bifida (n = 118), CHD (n = 366), Down syndrome (n = 281), and Down syndrome with CHD (n = 58) were recruited in Poland (n = 476), the UK (n = 120), Germany (n = 97), the Netherlands/Belgium (n = 74), Croatia (n = 68), Italy (n = 59), other European countries (n = 92), and not specified/non-European countries (n = 84). Most participants were mothers (92%) and aged 31-40 years (71%). Participants were most likely to rate support groups (63%), patient organisations (60%), specialist doctors/nurses (58%), and social media (57%) as 'very helpful' information sources. 'Very trustworthy' ratings remained high for specialist doctors/nurses (61%), however, they declined for support groups (47%), patient organisations (48%), and social media (35%). Germany had the highest proportion of participants who were 'very satisfied' (44%, 95% CI = 34%-54%) with information, whereas this percentage was lowest in Croatia (11%, 95% CI = 3%-19%) and Poland (15%, 95% CI = 11%-18%). Parents of children with Down syndrome had significantly lower satisfaction ratings than parents of children with CHD; 13% (95% CI = 8%-18%) reported being 'very satisfied' compared to 28% (95% CI = 23%-33%) in the CHD group. Conclusions Findings suggest that informal sources of information (e.g. support groups) are of value to parents, however, they are not deemed as trustworthy as specialist medical sources. Satisfaction ratings differed across countries and by anomaly, and were particularly low in Croatia and Poland, as well as for parents of children with Down syndrome, which warrants further investigation.
Filiaciones:
Marcus E:
Population Health Research Institute, St George's, University of London, Cranmer Terrace, London, SW17 0RE, UK.
Latos-Bielenska A:
Chair and Department of Medical Genetics, Poznan University of Medical Sciences, Collegium Maius, Fredry 10, 61-701, Poznan, Poland
Jamry-Dziurla A:
Chair and Department of Medical Genetics, Poznan University of Medical Sciences, Collegium Maius, Fredry 10, 61-701, Poznan, Poland
Barišic I:
Centre of Excellence for Reproductive and Regenerative Medicine, Children's Hospital Zagreb, Medical School University of Zagreb, Ul. Vjekoslava Klaica 16, 10000, Zagreb, Croatia
:
Rare Diseases Research Unit, Fundacio per al Foment de la Investigacio Sanitaria i Biomedica, Av. de Catalunya, 21, 46020, València, Spain
Den Hond E:
Provincial Institute for Hygiene (PIH), Kronenburgstraat 45, 2000, Antwerp, Belgium
Garne E:
Department of Paediatrics and Adolescent Medicine, Lillebaelt Hospital, University Hospital of Southern Denmark, Kolding, Denmark
Genard L:
Provincial Institute for Hygiene (PIH), Kronenburgstraat 45, 2000, Antwerp, Belgium
Santos AJ:
Department of Epidemiology, National Institute of Health Doctor Ricardo Jorge, Av. Padre Cruz, 1600-609, Lisbon, Portugal
Lutke L:
Department of Genetics, University Medical Center, University of Groningen, 9712 CP, Groningen, Netherlands
Matias Dias C:
Department of Epidemiology, National Institute of Health Doctor Ricardo Jorge, Av. Padre Cruz, 1600-609, Lisbon, Portugal
Neergaard Pedersen C:
Department of Paediatrics and Adolescent Medicine, Lillebaelt Hospital, University Hospital of Southern Denmark, Kolding, Denmark
Neville AJ:
IMER Registry (Emilia Romagna Registry of Birth Defects), University of Ferrara and Azienda Ospedaliero Universitaria Di Ferrara, Via Aldo Moro, 8, 44124, Ferrara, Italy
Niemann A:
Medical Faculty, Malformation Monitoring Centre Saxony-Anhalt, Otto-Von-Guericke-University Magdeburg, Leipziger Str. 44, 39120, Magdeburg, Germany
Odak L:
Centre of Excellence for Reproductive and Regenerative Medicine, Children's Hospital Zagreb, Medical School University of Zagreb, Ul. Vjekoslava Klaica 16, 10000, Zagreb, Croatia
Pierini A:
Unit of Epidemiology of Rare Diseases and Congenital Anomalies, Institute of Clinical Physiology, National Research Council, Via Giuseppe Moruzzi, 1, 56124, Pisa, Italy
Rico J:
Rare Diseases Research Unit, Fundacio per al Foment de la Investigacio Sanitaria i Biomedica, Av. de Catalunya, 21, 46020, València, Spain
Rissmann A:
Medical Faculty, Malformation Monitoring Centre Saxony-Anhalt, Otto-Von-Guericke-University Magdeburg, Leipziger Str. 44, 39120, Magdeburg, Germany
Rankin J:
Population Health Sciences Institute, Newcastle University, Newcastle Upon Tyne, NE1 7RU, UK
Morris JK:
Population Health Research Institute, St George's, University of London, Cranmer Terrace, London, SW17 0RE, UK
Green Published, Green Submitted, Green Accepted, gold
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