Goodwin J, Lecouturier J, Crombie S, Smith J, Basu A, Colver A, Kolehmainen N, Parr J R, Howel D, McColl E, Roberts A, Miller K, Cadwgan J
Newcastle University, Institute of Health and Society, Newcastle upon Tyne, UK.
Sussex Community NHS Foundation Trust, Chailey Clinical Services, Brighton, UK.
Child Care Health Dev. 2018 Mar;44(2):203-211. doi: 10.1111/cch.12540. Epub 2017 Nov 23.
Consensus opinion supports standing frame use as part of postural management for nonambulant young people with cerebral palsy. Although the rationale for standing frame use and the associated challenges have been described, little attention has been given to the users' experiences. The aim of the current study was to explore young people's positive and negative experiences, and attitudes regarding standing frame use.
Framework analysis informed an open exploration of young people's opinions of standing frames. Using semistructured interviews, 12 young people with cerebral palsy (6 female) were interviewed, providing the data set for transcription and thematic analysis.
The first theme "attitudes to standing frames" describes the young people's understanding of why they use standing frames. Although standing frames can be painful, some young people believe they should be endured to improve their body structure and function. There were mixed views about the impact standing frames have socially, with some young people feeling excluded from their peers, and others feeling as though standing frames helped them "fit in." Some young people are not offered a choice about how and when they use their standing frame. The second theme "challenges of standing frame use" highlights the issues with standing frame use such as manual handling, interference from siblings, and the lack of aesthetically pleasing standing frame designs.
Young people report benefits related to choice, pain relief, and participation but can also cause pain, discomfort, and reduced independence and participation. Healthcare professionals should have open, informative conversations about potential benefits and challenges of standing frames on all aspects of the young people's lives, including participation and activity.
共识意见支持将站立架的使用作为非行走型脑瘫青少年姿势管理的一部分。尽管已经描述了使用站立架的基本原理和相关挑战，但很少有人关注使用者的体验。本研究的目的是探讨青少年使用站立架的积极和消极体验以及态度。
框架分析为对青少年对站立架看法的开放式探索提供了依据。通过半结构化访谈，对12名脑瘫青少年（6名女性）进行了访谈，提供了用于转录和主题分析的数据集。
第一个主题“对站立架的态度”描述了青少年对使用站立架原因的理解。尽管使用站立架可能会很痛苦，但一些青少年认为应该忍受以改善身体结构和功能。对于站立架在社交方面的影响存在不同看法，一些青少年觉得被同龄人排斥，而另一些人则觉得站立架帮助他们“融入”。一些青少年在如何以及何时使用站立架方面没有选择。第二个主题“使用站立架的挑战”突出了使用站立架的问题，如人工搬运、兄弟姐妹的干扰以及站立架设计缺乏美观性。
青少年报告了与选择、缓解疼痛和参与相关的益处，但使用站立架也可能导致疼痛、不适以及独立性和参与度降低。医疗保健专业人员应该就站立架在青少年生活各个方面（包括参与和活动）的潜在益处和挑战进行开放、信息丰富的交流。
