دورية أكاديمية
Information needs of parents of children with congenital anomalies across Europe: a EUROlinkCAT survey.
| العنوان: | Information needs of parents of children with congenital anomalies across Europe: a EUROlinkCAT survey. |
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| المؤلفون: | Marcus, E, Latos-Bielenska, A, Jamry-Dziurla, A, Barišić, 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, Morris, JK |
| بيانات النشر: | BMC |
| سنة النشر: | 2022 |
| المجموعة: | St George's University of London: Repository |
| الوصف: | 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 ... |
| نوع الوثيقة: | article in journal/newspaper |
| وصف الملف: | application/pdf |
| اللغة: | English |
| العلاقة: | https://openaccess.sgul.ac.uk/id/eprint/115005/1/s12887-022-03734-z.pdfTest; https://openaccess.sgul.ac.uk/id/eprint/115005/6/12887_2022_3734_MOESM1_ESM.pdfTest; Marcus, E; Latos-Bielenska, A; Jamry-Dziurla, A; Barišić, I; Cavero-Carbonell, C; Den Hond, E; Garne, E; Genard, L; Santos, AJ; Lutke, L; et al. Marcus, E; Latos-Bielenska, A; Jamry-Dziurla, A; Barišić, 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; Morris, JK (2022) Information needs of parents of children with congenital anomalies across Europe: a EUROlinkCAT survey. BMC Pediatr, 22 (1). p. 657. ISSN 1471-2431 https://doi.org/10.1186/s12887-022-03734-zTest SGUL Authors: Marcus, Elena |
| DOI: | 10.1186/s12887-022-03734-z |
| الإتاحة: | https://doi.org/10.1186/s12887-022-03734-zTest https://openaccess.sgul.ac.uk/id/eprint/115005Test/ https://openaccess.sgul.ac.uk/id/eprint/115005/1/s12887-022-03734-z.pdfTest https://openaccess.sgul.ac.uk/id/eprint/115005/6/12887_2022_3734_MOESM1_ESM.pdfTest |
| حقوق: | cc_by_4 |
| رقم الانضمام: | edsbas.9A902DDE |
| قاعدة البيانات: | BASE |
| DOI: | 10.1186/s12887-022-03734-z |
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