家长在家庭的经验和需求 短肠综合征儿童的营养管理:一种定性研究
Qiufan Lu1, Qiao Shen2, Xin Wan1
1Department of Nursing, Children's Hospital of Chongqing Medical University, National Clinical Research Center for Children and Adolescents' Health and Diseases, Ministry of Education key Laboratory of Child Development and Disorders, Chongqing Key Laboratory of Structural Birth Defect and Reconstruction, Chongqing, China.
对于患有短肠综合征 (SBS) 的孩子来说,管理家庭营养的父母经历了相当大的情感和财务负担. 加强支持系统对于改善这些儿童的护理信心和长期结果至关重要.
科学领域:
- 儿科胃肠病学 儿科胃肠病学
- 营养科学 营养科学
- 质量健康研究 质量健康研究
背景情况:
- 短肠综合征 (SBS) 是儿童严重的吸收不良状况,需要长期的营养支持.
- 家庭营养管理对于儿科SBS患者的生长和发育至关重要.
- 了解父母的经验是改善SBS护理的关键.
研究的目的:
- 探索家长管理SBS儿童家庭营养的经验和需求.
- 确定当前儿童SBS营养管理实践中的差距.
- 为制定个性化,基于证据的支持策略提供信息.
主要方法:
- 使用半结构面试进行的定性描述性研究.
- 采访了12名患有SBS儿童的父母 (每人20-45分钟).
- 用内容分析来提取主题.
主要成果:
- 四个主要主题和12个子主题出现,包括复杂的情感经历 (疲劳,焦虑,适应).
- 挑战包括照顾者的负担,寻求医疗支持和应急准备.
- 父母报告说,他们面临着巨大的财务负担,需要多方面的医疗支持,政策变化,知识和机构援助.
结论:
- 管理SBS儿童家庭营养的家长面临着相当大的压力.
- 人们迫切需要结构化,多维的支持.
- 增强的支持可以加强护理人员的信心,并改善儿科SBS患者的长期结果.
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