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

Abstract

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.

Parental recommendations and exercise attitudes in congenital hearts

“…Another limitation is the lack of participation from fathers. Whilst this finding is not unique to the current study, 44 it limits the generalisability of the findings and it remains unknown if paternal activity behaviours and attitudes differ, and how any differences may influence their children. One further limitation is the wide age range (0-20 y, n = 83) and relatively small sample of adolescents (13-18 y, n = 10) included within the study, which resulted in a relatively younger sample (7.3 ± 5.0 years).…”

“…This is important because parents of young people with CHD find advice from medical sources (i.e., specialist cardiologists) significantly more trustworthy and helpful compared to informal sources (i.e., social media groups). 44 Therefore, to maintain trust in the clinician-patient relationship, appropriate and consistent activity advice is crucial for families to help promote participation in activity.…”

Parents of Children Diagnosed with Congenital Anomalies or Cerebral Palsy: Identifying Needs in Interaction with Healthcare Services

“…One possible explanation for these unmet information needs is parents’ expectations and different perceived outcomes of communication between parents and healthcare professionals. Studies have indicated that information is an important part of parental and familial adjustment [ 34 , 35 , 36 , 37 ], representing not only the need for understanding of the health condition, future impacts, and care but also providing a sense of control and satisfying the need for reassurance [ 9 , 34 , 38 , 39 , 40 ]. Hence, parents might have felt that they would require more information, even though additional information could not be provided at the time or in the way parents would like to have received.…”

Support and resources for patients with aortic disease

“…Patients will do their own research, so guiding them towards reputable support organizations can build trust in the physician–patient relationship. 2 Support organizations with medical and administrative oversight (typically a professional or medical advisory board that reviews education, answers questions, and reviews research proposals), helps to minimize exposure to anecdotal and false information. 3 As well, within these communities, it is advised that patients discuss specific medical plans and questions with their own care providers to develop a safe and personalized plan of care.…”