Gorzkowski Julie, Kelly Erin H, Klaas Sara J, Vogel Lawrence C
Shriners Hospitals for Children, Chicago, IL, USA.
J Spinal Cord Med. 2011 Nov;34(6):576-85. doi: 10.1179/2045772311Y.0000000037.
Examine caregiver-report of obstacles to community participation for youth with spinal cord injury (SCI), and explore relationships between obstacles and child, caregiver, and community characteristics.
Two hundred and one primary caregivers of youth with SCI ages 7-17 years were interviewed at three pediatric SCI centers within a single-hospital system. Caregivers answered an open-ended question assessing obstacles to youth participation. A mixed-methods approach was incorporated, where qualitative methods analyzed caregiver-reported obstacles, and exploratory multivariate analyses examined relationships between obstacles and demographic variables.
Caregivers were primarily mothers (74%), married (69%), employed (54%), had college experience (67%), and lived in small towns (55%). Youths' mean age was 12.60 years at interview and 7.19 years at injury, 70% had paraplegia, and 55% had complete injuries. Analyses revealed that youth participation was limited by obstacles across six domains: community, disability-related, practical concerns, child-internal, social, and other. Child, caregiver, and community characteristics were related to overall report of obstacles, and report of community obstacles, disability-related obstacles, and practical concerns. Caregiver college experience and small town living predicted overall report of obstacles. Having a child injured at a younger age, caregiver college experience, and small town living predicted community obstacles. Having a child with an incomplete injury and recent medical complication predicted disability-related obstacles. Caregiver employment predicted practical concerns.
Youth from small towns, those injured younger, those with incomplete injuries, and those experiencing recent medical complications may need additional supports and resources to maximize participation. Clinicians should work with caregivers to identify and problem-solve obstacles to youth participation.
调查脊髓损伤（SCI）青少年社区参与障碍的照料者报告，并探讨障碍与儿童、照料者及社区特征之间的关系。
在单一医院系统内的三个儿科SCI中心，对201名7至17岁SCI青少年的主要照料者进行了访谈。照料者回答了一个开放式问题，评估青少年参与的障碍。采用了混合方法，其中定性方法分析照料者报告的障碍，探索性多变量分析检验障碍与人口统计学变量之间的关系。
照料者主要为母亲（74%）、已婚（69%）、有工作（54%）、有大学经历（67%），居住在小镇（55%）。青少年访谈时的平均年龄为12.60岁，受伤时为7.19岁，70%患有截瘫，55%为完全性损伤。分析显示，青少年参与受到六个领域障碍的限制：社区、与残疾相关、实际问题、儿童自身、社会和其他。儿童、照料者和社区特征与障碍的总体报告、社区障碍报告、与残疾相关的障碍报告及实际问题报告相关。照料者的大学经历和居住在小镇可预测障碍的总体报告。孩子受伤时年龄较小、照料者的大学经历和居住在小镇可预测社区障碍。孩子为不完全性损伤且近期有医疗并发症可预测与残疾相关的障碍。照料者有工作可预测实际问题。
来自小镇的青少年、受伤时年龄较小的青少年、不完全性损伤的青少年以及近期有医疗并发症的青少年可能需要额外的支持和资源，以最大限度地参与。临床医生应与照料者合作，识别并解决青少年参与的障碍问题。
