Sawin Kathleen J, Bellin Melissa H, Roux Gayle, Buran Constance F, Brei Timothy J
Children's Hospital of Wisconsin, Milwaukee, USA.
Rehabil Nurs. 2009 Jan-Feb;34(1):26-38. doi: 10.1002/j.2048-7940.2009.tb00245.x.
It is essential for youth with chronic health conditions like spina bifida (SB) to develop self-management skills to combat vulnerability, achieve self-sufficiency, and transition to adulthood. The purpose of this qualitative study was to describe the experience of self-management in 31 adolescent women with SB. Three themes emerged from this study: (1) opportunities to engage in self-management activities--knowledge, skills, and aspirations; (2) dance of individuation--parental impact on self-management; and (3) advocacy within self-management--confronting discrimination and stigma. The findings indicate that assessment and interventions to enhance self-management in adolescent women with SB are critical for supporting the range of condition-related and life skills needed for a transition to adulthood and independent living.
对于患有脊柱裂（SB）等慢性健康问题的青少年来说，培养自我管理技能以对抗脆弱性、实现自给自足并过渡到成年期至关重要。这项定性研究的目的是描述31名患有脊柱裂的青春期女性的自我管理经历。该研究出现了三个主题：（1）参与自我管理活动的机会——知识、技能和愿望；（2）个性化之舞——父母对自我管理的影响；（3）自我管理中的倡导——面对歧视和耻辱。研究结果表明，评估和干预措施对于增强患有脊柱裂的青春期女性的自我管理能力至关重要，这有助于她们获得过渡到成年期和独立生活所需的一系列与健康状况相关的技能和生活技能。
