Basu Anna Purna, Pearse Janice Elizabeth, Baggaley Jessica, Watson Rose Mary, Rapley Tim
Institute of Neuroscience, Newcastle University, Newcastle upon Tyne, NE1 7RU, UK.
Department of Paediatric Neurology, Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, NE7 7DN, UK.
BMC Pediatr. 2017 Jan 23;17(1):33. doi: 10.1186/s12887-017-0797-9.
Perinatal stroke is the leading cause of unilateral (hemiparetic) cerebral palsy, with life-long personal, social and financial consequences. Translational research findings indicate that early therapy intervention has the potential for significant improvements in long-term outcome in terms of motor function. By involving families and health professionals in the development and design stage, we aimed to produce a therapy intervention which they would engage with.
Nine parents of children with hemiparesis and fourteen health professionals involved in the care of infants with perinatal stroke took part in peer review and focus groups to discuss evolving therapy materials, with revisions made iteratively. The materials and approach were also discussed at a meeting of the London Child Stroke Research Reference Group. Focus group data were coded using Normalisation Process Theory constructs to explore potential barriers and facilitators to routine uptake of the intervention.
We developed the Early Therapy in Perinatal Stroke (eTIPS) program - a parent-delivered, home-based complex intervention addressing a current gap in practice for infants in the first 6 months of life after unilateral perinatal stroke and with the aim of improving motor outcome. Parents and health professionals saw the intervention as different from usual practice, and valuable (high coherence). They were keen to engage (high cognitive participation). They considered the tasks for parents to be achievable (high collective action). They demonstrated trust in the approach and felt that parents would undertake the recommended activities (high collective action). They saw the approach as flexible and adaptable (high reflexive monitoring). Following suggestions made, we added a section on involving the extended family, and obtained funding for a website and videos to supplement written materials.
Focus groups with parents and health professionals provided meaningful feedback to iteratively improve the intervention materials prior to embarking on a pilot study. The intervention has a high potential to normalize and become a routine part of parents' interactions with their child following unilateral perinatal stroke.
围产期卒中是单侧（偏瘫型）脑瘫的主要病因，会给患者带来终身的个人、社会和经济后果。转化研究结果表明，早期治疗干预有可能显著改善运动功能方面的长期预后。通过让家庭和卫生专业人员参与开发和设计阶段，我们旨在制定一种他们愿意采用的治疗干预措施。
9名偏瘫儿童的家长和14名参与围产期卒中婴儿护理的卫生专业人员参加了同行评审和焦点小组，讨论不断完善的治疗材料，并反复进行修订。伦敦儿童卒中研究参考小组的一次会议也讨论了这些材料和方法。焦点小组数据使用归一化过程理论结构进行编码，以探讨常规采用该干预措施的潜在障碍和促进因素。
我们开发了围产期卒中早期治疗（eTIPS）项目——一项由家长实施的、基于家庭的综合干预措施，旨在解决单侧围产期卒中后6个月内婴儿目前在实践中的空白，目标是改善运动预后。家长和卫生专业人员认为该干预措施与常规做法不同且有价值（高度一致性）。他们热衷于参与（高度认知参与）。他们认为家长的任务是可以实现的（高度集体行动）。他们对该方法表示信任，并认为家长会开展推荐的活动（高度集体行动）。他们认为该方法灵活且可调整（高度反思性监测）。根据提出的建议，我们增加了一部分关于让大家庭参与的内容，并获得了为一个网站和视频提供资金的支持，以补充书面材料。
在开展试点研究之前，与家长和卫生专业人员进行的焦点小组提供了有意义的反馈，以反复改进干预材料。该干预措施很有可能实现常态化，并成为单侧围产期卒中后家长与孩子互动的常规组成部分。
