Shriners Hospitals for Children, Chicago, Illinois 60707, USA.
Dev Med Child Neurol. 2010 May;52(5):468-74. doi: 10.1111/j.1469-8749.2009.03552.x. Epub 2009 Dec 23.
To determine patterns of participation and levels of enjoyment in young people with spinal cord injuries (SCI) and to assess how informal and formal participation varies across child, injury-related, household, and community variables.
One hundred and ninety-four participants (106 males, 88 females; mean age 13y 2mo, SD 3y 8mo, range 6-18y) with SCI and their primary caregivers completed a demographics questionnaire and a standardized measure of participation (the Children's Assessment of Participation and Enjoyment, [CAPE]) at three pediatric SCI centers in a single hospital system in the United States. Their mean age at injury was 7 years 2 months (SD 5y 8mo, range 0-17y); 71% had paraplegia, and 58% had complete injuries.
Young people participated more often in informal activities (t((174))=29.84, p<0.001) and reported higher enjoyment with these (t((174))=2.01, p=0.046). However, when engaging in formal activities, they participated with a more diverse group (t((174))=-16.26, p<0.001) and further from home (t((174))=-16.08, p<0.001). Aspects of informal participation were related to the child's age, sex, and injury level, and formal participation to the child's age and caregiver education. Caregiver education was more critical to formal participation among young people with tetraplegia than among those with paraplegia (F((4,151))=2.67, p=0.034).
Points of intervention include providing more participation opportunities for young people with tetraplegia and giving caregivers the resources necessary to enhance their children's formal participation.
确定脊髓损伤（SCI）青少年的参与模式和享受水平，并评估非正式和正式参与如何因儿童、损伤相关、家庭和社区变量而有所不同。
在美国一家医院系统的三个儿科 SCI 中心，194 名参与者（106 名男性，88 名女性；平均年龄 13 岁 2 个月，标准差 3 岁 8 个月，范围 6-18 岁）及其主要照顾者完成了一份人口统计问卷和一项标准化参与度评估（儿童参与和享受评估，[CAPE]）。他们的平均受伤年龄为 7 岁 2 个月（标准差 5 岁 8 个月，范围 0-17 岁）；71%为截瘫，58%为完全损伤。
年轻人更多地参与非正式活动（t((174))=29.84，p<0.001），并且报告了更高的享受度（t((174))=2.01，p=0.046）。然而，当参与正式活动时，他们与更多样化的群体（t((174))=-16.26，p<0.001）和离家更远的群体（t((174))=-16.08，p<0.001）一起参与。非正式参与的各个方面与孩子的年龄、性别和损伤水平有关，而正式参与与孩子的年龄和照顾者的教育程度有关。在四肢瘫痪的年轻人中，照顾者的教育对正式参与的影响比截瘫的年轻人更为关键（F((4,151))=2.67，p=0.034）。
干预点包括为四肢瘫痪的年轻人提供更多的参与机会，并为照顾者提供增强其孩子正式参与所需的资源。
