对患有罕见疾病的儿童生活的定性探索
Niamh Buckle1, Yvonne Rogers2, Doris O'Toole3
1School of Nursing, Midwifery and Health Systems, University College Dublin, Dublin 4, Ireland.
Child: care, health and development
|June 26, 2024
概括
患有罕见病的儿童往往感觉不一样,特别是在社会环境中. 了解这些年轻人的日常挑战,并提高意识,可以为这些年轻人创造一个更具包容性的社会.
科学领域:
- 儿科健康 儿科健康
- 罕见疾病 罕见疾病
- 儿童心理学 儿童心理学
背景情况:
- 罕见疾病影响着少数人群,给公共卫生带来挑战.
- 约70%的罕见病影响儿童,但他们的经历未得到充分研究.
- 这项研究探讨了患有罕见疾病的儿童所面临的日常挑战.
研究的目的:
- 调查患有罕见疾病的儿童的生活经历.
- 了解这些孩子日常面临的挑战.
- 识别影响他们身份和归属感的因素.
主要方法:
- 与11名被诊断患有罕见疾病的儿童 (7-16岁) 进行了半结构面试.
- 参与者从爱尔兰的三级儿科医疗机构有意抽取样本.
- 采访成绩单使用感应主题分析进行了分析.
主要成果:
- 两个主要主题出现了:"对罕见疾病的知识和理解"和"适应与感觉不同".
- 这些主题影响了家庭,医院,学校和社会环境的参与者.
- 一个概念框架说明了知识,经验和情绪如何在罕见疾病的背景下塑造身份.
结论:
- 对于患有罕见疾病的儿童来说,归属感和感觉不同之间存在着复杂的相互作用.
- 社会环境突出了身份的双重性,对参与者产生了重大影响.
- 提高意识可以减轻社会挑战,并促进罕见疾病儿童的包容性.
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