Byrne Rachel, Duncan Andrea, Pickar Tracy, Burkhardt Stephanie, Boyd Roslyn N, Neel Mary Lauren, Maitre Nathalie L
Cerebral Palsy Foundation, New York, New York.
Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, PA.
Child Care Health Dev. 2019 Nov;45(6):799-807. doi: 10.1111/cch.12707. Epub 2019 Jul 30.
Although literature suggests that parents need support when their child is diagnosed with cerebral palsy (CP), it is unclear to what extent providers implement these supports in practice and what parental perspectives surround provider early diagnosis and management of CP. Therefore, we aimed to characterize and compare experiences of providers and parents of children with CP with regards to early detection and intervention.
Seventeen parents participated in day-long world-café style workshops focused on categories extracted from the International Classification of Function framework and recent systematic reviews of early detection for CP. Thirty regional providers (generalists, specialists, and therapists) caring for infants with CP completed surveys with scaled score and open-ended questions. Quantitative and qualitative data were independently assessed by two reviewers to identify prominent themes.
All parents (100%) stated early diagnosis or high risk for CP classification was beneficial compared with only 50% of providers who often gave early CP diagnoses before 12 months. Top parent priorities were honesty and positively phrased messages. Providers most often addressed cognition, primary care need, motor, and feeding issues (80%, 62%, 54%, 54% frequently/sometimes). Matching priorities for discussion were neuroimaging timing/risk/benefit, cognition, primary care, motor, and feeding/nutrition. Discordance occurred for participation, parent well-being, pain and vision, with parents wanting more education and resources.
Receiving early diagnoses or high-risk for CP classification is a parent priority. Alignment between parents and providers exists for International Classification of Function domains of body functions/structures and activity, but less for those of environment, personal, and participation.
尽管文献表明，当孩子被诊断患有脑瘫（CP）时，父母需要支持，但目前尚不清楚医疗服务提供者在实际中实施这些支持的程度，以及父母对医疗服务提供者早期诊断和管理脑瘫的看法。因此，我们旨在描述和比较脑瘫患儿的医疗服务提供者和父母在早期检测和干预方面的经历。
17名家长参加了为期一天的世界咖啡馆式研讨会，研讨会聚焦于从国际功能分类框架中提取的类别以及最近关于脑瘫早期检测的系统评价。30名照顾脑瘫婴儿的地区医疗服务提供者（全科医生、专科医生和治疗师）完成了带有评分量表和开放式问题的调查问卷。两名评审员独立评估定量和定性数据，以确定突出主题。
所有家长（100%）表示，早期诊断或脑瘫分类的高风险是有益的，而只有50%的医疗服务提供者经常在12个月前做出早期脑瘫诊断。家长最优先考虑的是诚实和措辞积极的信息。医疗服务提供者最常提及认知、初级保健需求、运动和喂养问题（经常/有时提及的比例分别为80%、62%、54%、54%）。讨论的匹配优先事项是神经影像学检查的时机/风险/益处、认知、初级保健、运动以及喂养/营养。在参与、家长幸福感、疼痛和视力方面存在不一致，家长希望获得更多教育和资源。
获得早期诊断或脑瘫分类的高风险是家长的优先事项。在国际功能分类的身体功能/结构和活动领域，家长和医疗服务提供者的看法一致，但在环境、个人和参与领域则不太一致。
