Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital , Toronto, ON , Canada .
Disabil Rehabil. 2014;36(4):276-88. doi: 10.3109/09638288.2013.785605. Epub 2013 Apr 24.
Evidence shows that effective self-management behaviors have the potential to improve health outcomes, quality of life, self-efficacy and reduce morbidity, emergency visits and costs of care. A better understanding of self-management interventions (i.e. programs that help with managing symptoms, treatment, physical and psychological consequences) is needed to achieve a positive impact on health because most children with a disability now live well into adulthood.
A systematic review of self-management interventions for school age youth with physical disabilities was undertaken to assess their effectiveness. Comprehensive electronic searches using international web-based reference libraries were conducted for peer-reviewed and gray literature published between 1980 and January 2012. Eligible studies examined the effectiveness of self-management interventions for children and youth between 6 and 18 years of age with congenital or acquired physical disabilities. Studies needed to include a comparison group (e.g. single group pre/post-test design) and at least one quantifiable health-related outcome.
Of the 2184 studies identified, six met the inclusion criteria; two involved youth with spina bifida and four with juvenile arthritis. The majority of the interventions ran several sessions for at least 3 months by a trained interventionist or clinician, had one-to-one sessions and meetings, homework activities and parental involvement. Although outcomes varied between the studies, all of the interventions reported at least one significant improvement in either overall self-management skills or a specific health behavior.
While self-management interventions have the potential to improve health behaviors, there were relatively few rigorously designed studies identified. More studies are needed to document the outcomes of self-management interventions, especially their most effective characteristics for children and youth with physical disabilities. Implications for Rehabilitation There is some evidence to suggest that self-management interventions for children and youth with spina bifida and arthritis can improve self-management behaviors and health outcomes. Parents' involvement should be considered in encouraging self-management behaviors at different stages of their child's development. Much work is needed to explore the longer term implications of self-management interventions for youth with physical disabilities as well as the impact on health care utilization.
有证据表明，有效的自我管理行为有可能改善健康结果、生活质量、自我效能感，并降低发病率、急诊就诊次数和医疗费用。为了对健康产生积极影响，我们需要更好地了解自我管理干预措施（即帮助管理症状、治疗、身体和心理后果的方案），因为现在大多数残疾儿童都能健康长寿地进入成年期。
我们对针对学龄期身体残疾儿童的自我管理干预措施进行了系统评价，以评估其效果。我们对国际网络参考图书馆中的同行评议和灰色文献进行了全面的电子检索，检索时间范围为 1980 年至 2012 年 1 月。符合条件的研究调查了 6 至 18 岁患有先天性或获得性身体残疾的儿童和青少年的自我管理干预措施的效果。这些研究需要包括一个对照组（例如，单组前后测试设计）和至少一个可量化的健康相关结果。
在确定的 2184 项研究中，有 6 项符合纳入标准；其中两项研究涉及脊柱裂青年，四项研究涉及青少年关节炎。大多数干预措施由经过培训的干预者或临床医生进行了几次至少 3 个月的课程，有一对一的课程和会议、家庭作业活动和家长参与。尽管研究结果有所不同，但所有干预措施都报告了自我管理技能或特定健康行为至少有一项显著改善。
虽然自我管理干预措施有可能改善健康行为，但确定的精心设计的研究相对较少。需要进行更多的研究来记录自我管理干预措施的结果，特别是它们对身体残疾儿童和青少年最有效的特征。
有一些证据表明，针对脊柱裂和关节炎儿童和青少年的自我管理干预措施可以改善自我管理行为和健康结果。在孩子不同的发展阶段，应考虑让家长参与，以鼓励自我管理行为。需要做大量的工作来探索自我管理干预措施对身体残疾青年的长期影响，以及对医疗保健利用的影响。
