针对家庭的青少年特发性关节炎静修活动评估。
An evaluation of a juvenile idiopathic arthritis retreat for families.
作者信息
Burbage Michelle L, Mason Meredith B, Nabors Laura A, Kichler Jessica C
机构信息
Health Promotion & Education, School of Human Services, College of Education, Criminal Justice, and Human Services, University of Cincinnati, PO Box 210068, ML 0068, 526TC, Cincinnati, OH, 45221-0068, USA.
Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, USA.
出版信息
Pediatr Rheumatol Online J. 2015 Apr 21;13:12. doi: 10.1186/s12969-015-0010-3.
BACKGROUND
The current study evaluated the support and education families with a child who has Juvenile Idiopathic Arthritis (JIA) received during a weekend family retreat.
METHODS
Thirty-one parents completed surveys at the end of the retreat session. Survey questions examined parent's perceptions of the family retreat experience including what they learned and how beneficial it was to their family.
RESULTS
Results indicated that the family retreat was beneficial to both the children with JIA and their siblings. Children with JIA had the opportunity to see that other children have this disease as well. At the family retreat, siblings were provided the chance to see that children with JIA are capable of many accomplishments. In addition, the family retreat provided opportunities to learn from other families and offered families reduced isolation.
CONCLUSIONS
The family retreat was successful in delivering education and support to families, which might not otherwise be obtained via a clinical setting. Parents learned how to support their child with JIA, develop their child's pain management skills, and remain positive as a family. Future research should assess if the education and support family retreats provide have long-term improvement to managing and coping with JIA.
背景
当前研究评估了患有幼年特发性关节炎（JIA）孩子的家庭在周末家庭静修期间所获得的支持与教育。
方法
31位家长在静修课程结束时完成了调查问卷。调查问题涉及家长对家庭静修体验的看法，包括他们学到了什么以及这对他们家庭的益处。
结果
结果表明，家庭静修对患有JIA的孩子及其兄弟姐妹均有益处。患有JIA的孩子有机会看到其他孩子也患有这种疾病。在家庭静修中，兄弟姐妹有机会看到患有JIA的孩子能够取得许多成就。此外，家庭静修提供了向其他家庭学习的机会，并减少了家庭的孤立感。
结论
家庭静修成功地为家庭提供了教育和支持，而这些可能无法通过临床环境获得。家长学会了如何支持患有JIA的孩子，培养孩子的疼痛管理技能，并作为一个家庭保持积极心态。未来的研究应评估家庭静修所提供的教育和支持是否对JIA的管理和应对有长期改善作用。
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