Journal Article

COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services

Neville, Amanda, Pierini, Anna, Páramo-Rodríguez, Lucía, Jamry-Dziurla, Anna, Barisic, Ingeborg, João Santos, Ana, Latos-Bieleńska, Anna, Cavero- Carbonell, Clara, Marcus, Elena, Rankin, Judith, Rissmann, Anke, Matias Dias, Carlos, Genard, Lucas, Lutke, L Renée, Odak, Ljubica, Neergaard Pedersen, Christina, Den Hond, Elly, Niemann, Annika, Morris, Joan K, Garne, Ester

2022

Overview

ObjectiveTo 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.DesignCross-sectional study.SettingOnline survey in 10 European countries, open from 8 March 2021 to 14 July 2021.Population1070 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 measuresParental 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.ResultsDisruptions 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.ConclusionA 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.

• Publisher: British Medical Journal Publishing Group,BMJ Publishing Group LTD,BMJ Publishing Group
• Subject: Caregivers / Children & youth / Congenital Anomalies / Coronaviruses / COVID-19 / Disability / Disease transmission / Down syndrome / Estados de Saúde e de Doença / EUROlinkCAT / Europe / European Survey / Guardians / Infections / international health services / Observação em Saúde e Vigilância / Paediatrics / Pandemics / Parents & parenting / Pediatrics / Registo Nacional de Anomalias Congénitas / RENAC / Severe acute respiratory syndrome coronavirus 2 / Social networks / Spina bifida / Well being