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

Lay Summary

 Caring for a child with healthcare needs can be challenging for parents and their family. Access to good quality information about their child’s condition is important to support coping and so that parents can make informed decisions about their child’s care. In this study we surveyed parents and carers of children who have structural congenital anomalies (also called birth defects) across Europe, to explore their information needs.

We developed a survey in nine languages and asked relevant organisations in 10 European countries to advertise it online and via social media (the Dutch survey was used both in Belgium and the Netherlands). We invited parents and carers of children (up to 10 years of age) who had one or more of the following health conditions to take part: (1) spina bifida, (2) a congenital heart defect which required surgery, (3) a cleft lip (with or without a cleft palate), and (4) Down syndrome. Parents were asked to complete the survey once, which was available from March to July 2021.

In total 1,109 people completed the survey. These were parents and carers of children with a congenital heart defect (n=366), Down syndrome (n=281), a cleft lip (n=247), spina bifida (n=118), Down syndrome with congenital heart defect (n=58), and other combinations of the four anomalies (n=15). Parents and carers lived in Poland (n=476), the UK (n=120), Germany (n=97), Belgium/Netherlands (n=74), Croatia (n=68), Italy (n=59), and other European countries (n=92).  

Our results indicated that parents get information about their child’s health condition from a range of different information sources, the most popular being via specialist doctors/nurses and internet searches. Parents and carers were asked to rate how helpful and how trustworthy they found each information source. The sources with the highest percentage of ‘very helpful’ ratings were: support groups (63%), patient organisations (60%), specialist doctors/nurses (58%), and social media (57%). The ‘very trustworthy’ ratings remained high for specialist doctors/nurses (61%), but declined for support groups (47%), patient organisations (48%), and social media (35%). Overall, only 23% of parents said they were ‘very satisfied’ with the information they had received about their child’s health condition.

Our findings indicate that parents obtain information about their child’s health condition from a range of medical and informal sources. Medical specialists were the most frequently used source of information and were also rated most highly for helpfulness and trustworthiness. Informal sources of information appeared to be of value to parents, however, they were not deemed as trustworthy. With trust in these information sources lacking, it is important that healthcare professionals actively signpost parents to reliable sources of information, such as clear medical websites. Overall satisfaction with information was somewhat low and indicates a potential information gap.


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