Population Health Research Institute, St George's, University of London, Cranmer Terrace, London, SW17 0RE, UK.
Chair and Department of Medical Genetics, Poznan University of Medical Sciences, Collegium Maius, Fredry 10, 61-701, Poznań, Poland.
BMC Pediatr. 2022 Nov 12;22(1):657. doi: 10.1186/s12887-022-03734-z.
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.
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.
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.
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.
患有先天异常的儿童的父母可能会非常担心孩子的健康。获得清晰、有用和值得信赖的信息可以提供有价值的支持来源。本研究旨在探讨欧洲各地患有先天异常儿童的父母/照顾者的信息需求。
采用跨文化在线调查的方法，用 9 种语言测量父母的信息需求，包括：（1）从 8 个相关来源获得的信息的“有用性”/“可信度”，以及（2）对获得的信息的总体满意度。从 2021 年 3 月至 7 月，通过 10 个欧洲国家的相关组织招募了 1070 名 0-10 岁患有唇裂（n=247）、脊柱裂（n=118）、先天性心脏病（CHD）需手术治疗（n=366）、唐氏综合征（n=281）和唐氏综合征伴 CHD（n=58）的儿童的父母/照顾者。使用多变量逻辑回归进行定量分析。
共招募了来自波兰（n=476）、英国（n=120）、德国（n=97）、荷兰/比利时（n=74）、克罗地亚（n=68）、意大利（n=59）、其他欧洲国家（n=92）和未指定/非欧洲国家（n=84）的 476 名唇裂、120 名脊柱裂、97 名 CHD、74 名唐氏综合征和 58 名唐氏综合征伴 CHD儿童的父母/照顾者。大多数参与者为母亲（92%），年龄在 31-40 岁（71%）。参与者最有可能将支持小组（63%）、患者组织（60%）、专科医生/护士（58%）和社交媒体（57%）评为“非常有用”的信息来源。专科医生/护士（61%）的“非常值得信赖”评级仍然很高，但支持小组（47%）、患者组织（48%）和社交媒体（35%）的评级下降。德国有最高比例的参与者对信息“非常满意”（44%，95%CI=34%-54%），而克罗地亚（11%，95%CI=3%-19%）和波兰（15%，95%CI=11%-18%）的比例最低。唐氏综合征患儿的父母满意度评分明显低于 CHD 患儿的父母；与 CHD 组 28%（95%CI=23%-33%）相比，13%（95%CI=8%-18%）的患儿报告“非常满意”。
研究结果表明，非正规信息来源（如支持小组）对父母很有价值，但不如专业医疗来源值得信赖。满意度评分因国家和异常情况而异，在克罗地亚和波兰以及唐氏综合征患儿的父母中评分特别低，这需要进一步调查。
