养育一个具有复杂性和稀有性的孩子:探索普拉德-威利综合征的叙事调查
Genevieve Currie1, Andrew Estefan2, Vera Caine3
1School of Nursing and Midwifery, Faculty of Health, Community and Education, Mount Royal University, Calgary, AB, Canada.
Qualitative health research
|January 29, 2024
概括
照顾患有普拉德-威利综合征 (PWS) 的孩子的母亲每天都面临着独特的挑战. 了解这些经验可以改善对PWS家庭的社会和临床支持.
科学领域:
- 儿科健康 儿科健康
- 孕产妇健康 孕产妇健康
- 遗传学和罕见疾病
背景情况:
- 普拉德-威利综合征 (PWS) 的知识往往集中在病理学上,忽视了母亲的日常照顾经验.
- 现有的医疗描述忽略了管理PWS的复杂性,包括过和焦虑.
- 母亲的生活经历为抚养患有PWS的孩子的现实提供了关键的见解.
研究的目的:
- 探索照顾遗传确认的普拉德-威利综合征 (PWS) 儿童的母亲的日常经历.
- 了解培养患有PWS的儿童所面临的挑战和细微差别,重点关注患有过症的儿童.
- 为了生成扩展的叙述,以告知PWS护理的社会和临床观点.
主要方法:
- 采用了叙事调查方法,利用母亲的传说.
- 在12个月的时间里,对4位3至17岁儿童的母亲进行了8至12次的采访,其中4名母亲患有遗传确认的PWS和过食症.
- 现场文本和叙事帐户的协作分析促进了发现的共同组成.
主要成果:
- 每天的经历揭示了复杂性,稀有性,对正常的渴望和普通时刻的转变的主题.
- 母亲的叙述强调了孤立的经历,管理具有挑战性的行为,并坚持规范的标准.
- 关键的叙事主题包括培养和为护理做出贡献的"工作",以及母亲的替代故事.
结论:
- 了解母亲的日常现实对于改变对PWS的社会和临床观点至关重要.
- 建议包括解决母亲的复杂性,优先考虑生活质量而不仅仅是功能性,并重新描述支持系统.
- 让母亲参与确定护理优先事项对于改善PWS家庭的健康和社会护理实践至关重要.
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