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父母参与针对脑瘫高危婴儿的“小步”早期干预项目的经历:关键要素与潜在困境

Parents' experiences of participating in the Small Step early intervention program for infants at high risk of cerebral palsy: essential components and potential dilemmas.

作者信息

Elvrum Ann-Kristin G, Eliasson Ann-Christin, Berg Kårstad Silja, Sæther Rannei, Söderström Sylvia

机构信息

Department of Neuromedicine and Movement Science, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology, Trondheim, Norway.

Department of Clinical and Molecular Medicine, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology, Trondheim, Norway.

出版信息

Disabil Rehabil. 2025 Feb;47(4):968-976. doi: 10.1080/09638288.2024.2362394. Epub 2024 Jun 7.

Abstract

PURPOSE

To explore parents' perceptions of essential components and potential dilemmas within the family-centred and goal-directed Small Step program, an interprofessional early intervention for families of infants at high risk of cerebral palsy (CP).

MATERIALS AND METHODS

Thirteen parents (eight mothers and five fathers) of ten children participated in this qualitative study through individual in-depth interviews. Transcripts were analysed using reflexive thematic analysis.

RESULTS

The parents emphasized the advantage of having the intervention provided at home with coaching and flexible support from the interprofessional team of therapists. This assured the families and enhanced their capacity to provide the child with playful and enriched learning opportunities integrated in everyday life. However, identification of achievable goals and intervention delivery could be emotionally taxing for parents, especially in the early stages and if treatment effects were below hopes and expectations.

CONCLUSIONS

Our findings provide insights into what kind of support parents prefer and dilemmas professionals should be aware of when providing early intervention to families of infants at high risk of CP. Parents appreciated being involved as equal partners and receiving home-based guidance. Acknowledging grief and sorrow as natural reactions and fostering open discussions about expectations seem essential in addressing families' individual needs.

摘要

目的

探讨家长对以家庭为中心、目标导向的“小步计划”中基本要素的看法以及潜在困境。“小步计划”是一项针对脑瘫(CP)高危婴儿家庭的跨专业早期干预措施。

材料与方法

十个孩子的十三位家长(八位母亲和五位父亲)通过个人深度访谈参与了这项定性研究。使用反思性主题分析法对访谈记录进行分析。

结果

家长们强调了在家中接受干预的优势,治疗师跨专业团队会提供指导和灵活支持。这让家庭安心,并增强了他们在日常生活中为孩子提供有趣且丰富学习机会的能力。然而,确定可实现的目标和提供干预对家长来说可能在情感上具有挑战性,尤其是在早期阶段,以及治疗效果未达期望时。

结论

我们的研究结果揭示了家长更喜欢何种支持,以及专业人员在为CP高危婴儿家庭提供早期干预时应注意哪些困境。家长们赞赏能作为平等伙伴参与其中并获得居家指导。认识到悲伤是自然反应并促进关于期望的开放讨论,对于满足家庭的个体需求似乎至关重要。

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