COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services
Autor(a) principal: | |
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Data de Publicação: | 2022 |
Outros Autores: | , , , , , , , , , , , , , , , , , , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
Texto Completo: | http://hdl.handle.net/10400.18/8459 |
Resumo: | Objective: To survey parents and carers of children with a congenital anomaly across Europe about their experiences of healthcare services and support during the COVID-19 pandemic. Design: Cross-sectional study. Setting Online survey in 10 European countries, openfrom 8 March 2021 to 14 July 2021.Population: 1070 parents and carers of children aged 0–10 years with a cleft lip, spina bifida, congenital heart defect (CHD) requiring surgery and/or Down syndrome. Main outcome measures: Parental views about: the provision of care for their child (cancellation/postponement of appointments, virtual appointments, access to medication), the impact of disruptions to healthcare on their child’s health and well-being,and satisfaction with support from medical sources, organisations and close relationships. Results: Disruptions to healthcare appointments were significantly higher (p<0.001) in the UK and Poland, with approximately two-thirds of participants reporting‘ cancelled or postponed’ tests (67/101; 256/389) and procedures compared with approximately 20% in Germany (13/74) and Belgium/Netherlands (11/55). A third of participants in the UK and Poland reported ‘cancelled or postponed’ surgeries (22/72; 98/266) compared with only 8% in Germany (5/64). In Poland, 43% (136/314) of parents reported that changes to their child’s ongoing treatment had moderately to severely affected their child’s health, significantly higher than all other countries (p<0.001). Satisfaction ratings for support from general practitioners were lowest in the UK and Poland, and lowest in Poland and Italy for specialist doctors and nurses. Conclusion: A large proportion of participants reported disruptions to healthcare during the pandemic, which for some had a significant impact on their child’s health. Regional differences in disruptions raise questions about the competence of certain healthcare systems to meet the needs of this vulnerable group of patients and indicate improvements should be strived for in some regions. |
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COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare servicesCongenital AnomaliesCOVID-19European SurveyEUROlinkCATEuropeRegisto Nacional de Anomalias CongénitasRENACEstados de Saúde e de DoençaObservação em Saúde e VigilânciaObjective: To survey parents and carers of children with a congenital anomaly across Europe about their experiences of healthcare services and support during the COVID-19 pandemic. Design: Cross-sectional study. Setting Online survey in 10 European countries, openfrom 8 March 2021 to 14 July 2021.Population: 1070 parents and carers of children aged 0–10 years with a cleft lip, spina bifida, congenital heart defect (CHD) requiring surgery and/or Down syndrome. Main outcome measures: Parental views about: the provision of care for their child (cancellation/postponement of appointments, virtual appointments, access to medication), the impact of disruptions to healthcare on their child’s health and well-being,and satisfaction with support from medical sources, organisations and close relationships. Results: Disruptions to healthcare appointments were significantly higher (p<0.001) in the UK and Poland, with approximately two-thirds of participants reporting‘ cancelled or postponed’ tests (67/101; 256/389) and procedures compared with approximately 20% in Germany (13/74) and Belgium/Netherlands (11/55). A third of participants in the UK and Poland reported ‘cancelled or postponed’ surgeries (22/72; 98/266) compared with only 8% in Germany (5/64). In Poland, 43% (136/314) of parents reported that changes to their child’s ongoing treatment had moderately to severely affected their child’s health, significantly higher than all other countries (p<0.001). Satisfaction ratings for support from general practitioners were lowest in the UK and Poland, and lowest in Poland and Italy for specialist doctors and nurses. Conclusion: A large proportion of participants reported disruptions to healthcare during the pandemic, which for some had a significant impact on their child’s health. Regional differences in disruptions raise questions about the competence of certain healthcare systems to meet the needs of this vulnerable group of patients and indicate improvements should be strived for in some regions.This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement number 733001.BMJ Publishing GroupRepositório Científico do Instituto Nacional de SaúdeLatos-Bieleńska, AnnaMarcus, ElenaJamry-Dziurla, AnnaRankin, JudithBarisic, IngeborgCavero- Carbonell, ClaraDen Hond, EllyGarne, EsterGenard, LucasSantos, Ana JoãoLutke, L RenéeMatias Dias, CarlosNeergaard Pedersen, ChristinaNeville, AmandaNiemann, AnnikaOdak, LjubicaPáramo-Rodríguez, LucíaPierini, AnnaRissmann, AnkeMorris, Joan K.2023-01-25T14:48:28Z20222022-01-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10400.18/8459engBMJ Open. 2022;12:e061428. doi:10.1136/bmjopen-2022-0614282044-605510.1136/bmjopen-2022-061428info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2023-07-20T15:42:34Zoai:repositorio.insa.pt:10400.18/8459Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T18:43:04.445536Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse |
dc.title.none.fl_str_mv |
COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services |
title |
COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services |
spellingShingle |
COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services Latos-Bieleńska, Anna Congenital Anomalies COVID-19 European Survey EUROlinkCAT Europe Registo Nacional de Anomalias Congénitas RENAC Estados de Saúde e de Doença Observação em Saúde e Vigilância |
title_short |
COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services |
title_full |
COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services |
title_fullStr |
COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services |
title_full_unstemmed |
COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services |
title_sort |
COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services |
author |
Latos-Bieleńska, Anna |
author_facet |
Latos-Bieleńska, Anna Marcus, Elena Jamry-Dziurla, Anna Rankin, Judith Barisic, Ingeborg Cavero- Carbonell, Clara Den Hond, Elly Garne, Ester Genard, Lucas Santos, Ana João Lutke, L Renée Matias Dias, Carlos Neergaard Pedersen, Christina Neville, Amanda Niemann, Annika Odak, Ljubica Páramo-Rodríguez, Lucía Pierini, Anna Rissmann, Anke Morris, Joan K. |
author_role |
author |
author2 |
Marcus, Elena Jamry-Dziurla, Anna Rankin, Judith Barisic, Ingeborg Cavero- Carbonell, Clara Den Hond, Elly Garne, Ester Genard, Lucas Santos, Ana João Lutke, L Renée Matias Dias, Carlos Neergaard Pedersen, Christina Neville, Amanda Niemann, Annika Odak, Ljubica Páramo-Rodríguez, Lucía Pierini, Anna Rissmann, Anke Morris, Joan K. |
author2_role |
author author author author author author author author author author author author author author author author author author author |
dc.contributor.none.fl_str_mv |
Repositório Científico do Instituto Nacional de Saúde |
dc.contributor.author.fl_str_mv |
Latos-Bieleńska, Anna Marcus, Elena Jamry-Dziurla, Anna Rankin, Judith Barisic, Ingeborg Cavero- Carbonell, Clara Den Hond, Elly Garne, Ester Genard, Lucas Santos, Ana João Lutke, L Renée Matias Dias, Carlos Neergaard Pedersen, Christina Neville, Amanda Niemann, Annika Odak, Ljubica Páramo-Rodríguez, Lucía Pierini, Anna Rissmann, Anke Morris, Joan K. |
dc.subject.por.fl_str_mv |
Congenital Anomalies COVID-19 European Survey EUROlinkCAT Europe Registo Nacional de Anomalias Congénitas RENAC Estados de Saúde e de Doença Observação em Saúde e Vigilância |
topic |
Congenital Anomalies COVID-19 European Survey EUROlinkCAT Europe Registo Nacional de Anomalias Congénitas RENAC Estados de Saúde e de Doença Observação em Saúde e Vigilância |
description |
Objective: To survey parents and carers of children with a congenital anomaly across Europe about their experiences of healthcare services and support during the COVID-19 pandemic. Design: Cross-sectional study. Setting Online survey in 10 European countries, openfrom 8 March 2021 to 14 July 2021.Population: 1070 parents and carers of children aged 0–10 years with a cleft lip, spina bifida, congenital heart defect (CHD) requiring surgery and/or Down syndrome. Main outcome measures: Parental views about: the provision of care for their child (cancellation/postponement of appointments, virtual appointments, access to medication), the impact of disruptions to healthcare on their child’s health and well-being,and satisfaction with support from medical sources, organisations and close relationships. Results: Disruptions to healthcare appointments were significantly higher (p<0.001) in the UK and Poland, with approximately two-thirds of participants reporting‘ cancelled or postponed’ tests (67/101; 256/389) and procedures compared with approximately 20% in Germany (13/74) and Belgium/Netherlands (11/55). A third of participants in the UK and Poland reported ‘cancelled or postponed’ surgeries (22/72; 98/266) compared with only 8% in Germany (5/64). In Poland, 43% (136/314) of parents reported that changes to their child’s ongoing treatment had moderately to severely affected their child’s health, significantly higher than all other countries (p<0.001). Satisfaction ratings for support from general practitioners were lowest in the UK and Poland, and lowest in Poland and Italy for specialist doctors and nurses. Conclusion: A large proportion of participants reported disruptions to healthcare during the pandemic, which for some had a significant impact on their child’s health. Regional differences in disruptions raise questions about the competence of certain healthcare systems to meet the needs of this vulnerable group of patients and indicate improvements should be strived for in some regions. |
publishDate |
2022 |
dc.date.none.fl_str_mv |
2022 2022-01-01T00:00:00Z 2023-01-25T14:48:28Z |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
http://hdl.handle.net/10400.18/8459 |
url |
http://hdl.handle.net/10400.18/8459 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
BMJ Open. 2022;12:e061428. doi:10.1136/bmjopen-2022-061428 2044-6055 10.1136/bmjopen-2022-061428 |
dc.rights.driver.fl_str_mv |
info:eu-repo/semantics/openAccess |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
application/pdf |
dc.publisher.none.fl_str_mv |
BMJ Publishing Group |
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BMJ Publishing Group |
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Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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RCAAP |
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RCAAP |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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1799132176703291392 |