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

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

doi:10.1136/bmjopen-2022-061428

Cited by 2 publications

(1 citation statement)

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“…The survey was launched in each country, as and when approvals were granted and translations were finalised (Table 1). The survey also explored parents' and carers' support needs (manuscript in preparation), and their experiences during the COVID-19 pandemic [32].…”

Section: Methodsmentioning

confidence: 99%

Information needs of parents of children with congenital anomalies across Europe: a EUROlinkCAT survey

et al. 2022

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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.

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Section: Methodsmentioning

confidence: 99%

Information needs of parents of children with congenital anomalies across Europe: a EUROlinkCAT survey

et al. 2022

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The Impact of the COVID-19 Pandemic on Individuals with Down Syndrome: A Croatian Survey

Barišić,

Ergović Ravančić,

Majstorović

et al. 2024

Balkan Journal of Medical Genetics

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Background Severe acute respiratory syndrome coronavirus-2 infection has spread uncontrollably worldwide. Among the most vulnerable groups in society are populations with multiple comorbidities, including individuals with Down syndrome (DS). Aim Our aim was to conduct an online survey to assess the impact of COVID-19 on DS individuals in Croatia. We also explored the views of their parents and caregivers about the challenges they faced during COVID-19. Methods The anonymous online survey was launched in March 2022 and remained open until October 2022. Participants were conducted online through closed group on Facebook. The survey included questions about participant characteristics, medical information, clinical presentation of COVID-19, and challenges faced by the parents during COVID-19. Results A total of 268 surveys were collected and analysed. We found that age and body mass index of DS individuals were significantly and positively correlated with the clinical presentation of COVID-19. Lack of social activities, cancelled therapies, and psychological problems were the most frequently cited challenges during the pandemic. Conclusion Clinicians and caregivers should primarily be alert to the same COVID-19 signs and symptoms that occur in the general population (fever, cough, shortness of breath). Ongoing therapies, social activities, and psychological support should be cited as indispensable for maintaining physical health and emotional well-being in DS individuals.

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

Cited by 2 publications

References 40 publications

Information needs of parents of children with congenital anomalies across Europe: a EUROlinkCAT survey

Information needs of parents of children with congenital anomalies across Europe: a EUROlinkCAT survey

The Impact of the COVID-19 Pandemic on Individuals with Down Syndrome: A Croatian Survey

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