Department of Clinical Research, University of Southern Denmark, Odense, Denmark.
R82 A/S, Gedved, Denmark.
Child Care Health Dev. 2024 Sep;50(5):e13310. doi: 10.1111/cch.13310.
An improved understanding of the current practice of standing frame use may have implications for supporting parents in managing standing frames. We aimed to investigate how parents of children with cerebral palsy perceive and manage standing frame use in home settings.
We conducted a mixed methods study with an explanatory sequential design, first collecting and analysing quantitative questionnaire data and then using these results to inform a qualitative follow-up phase to explain them. The questionnaire was answered by 103 parents of children with cerebral palsy across five countries, Denmark, Norway, Great Britain, Canada and the United States, and 12 Danish families participated in the subsequent interviews. A descriptive analysis was conducted using the questionnaire data. The qualitative data were analysed using a directed content analysis, enabling integration of the quantitative and qualitative data.
The quantitative analysis showed that 89% of the parents felt confident with their child's standing frame, and 82% felt they had sufficient knowledge about how their child's standing frame could/should be used. However, the qualitative analysis showed that even when feeling confident, the parents experienced insecurity regarding whether their child was positioned correctly, and being responsible for positioning was challenging.
Our study implies a need for providing educational materials to assist the parents in ensuring optimal positioning of their child in the standing frame to decrease insecurity. Additionally, our study suggests a need to provide more thorough information about the benefits of using a standing frame and ensure alignment of expectations in relation to the child's prognosis of functional independence.
深入了解当前使用站立架的情况可能对父母管理站立架有所帮助。本研究旨在调查脑瘫患儿父母如何在家中使用站立架。
本研究采用混合方法设计，首先收集和分析定量问卷数据，然后根据结果进行定性后续分析。共有来自丹麦、挪威、英国、加拿大和美国的 103 名脑瘫患儿家长参与了问卷调查，其中 12 个丹麦家庭参与了后续访谈。问卷数据采用描述性分析，定性数据采用有针对性的内容分析，实现定量和定性数据的整合。
定量分析显示，89%的父母对孩子的站立架有信心，82%的父母对如何使用孩子的站立架有足够的了解。然而，定性分析表明，即使父母感到有信心，他们在孩子是否正确定位方面仍感到不安，负责定位是一项挑战。
本研究表明，需要提供教育材料来帮助父母确保孩子在站立架中得到最佳定位，以减少不安感。此外，本研究还表明需要提供更全面的信息，说明使用站立架的好处，并确保在孩子的功能独立性预后方面达成一致的期望。
