成骨不全症儿童学校经历的定性调查。

IF 0.6 4区 医学 Q4 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH
Julia M Morales, Andrew D Wiese, Whitney S Shepherd, Gianna M Colombo, Selena Guo, Justin Qian, W Conor Rork, Hannah Cho, Kristin M Kostick-Quenet, Dianne Nguyen, Erin M Carter, Michelle L Fynan, Chaya N Murali, Marie-Eve Robinson, Sophie C Schneider, Brendan Lee, V Reid Sutton, Eric A Storch
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引用次数: 0

摘要

成骨不全症(OI)是一种罕见的遗传性慢性疾病,导致骨骼脆弱和频繁骨折,具有广泛的健康影响。目前的文献表明,患有慢性疾病的儿童在学校面临着独特的挑战,然而关于成骨不全症患者的教育问题的研究却很有限。本研究对10名成骨不全症患儿和12名成骨不全症患儿的看护人进行了半结构化访谈,并对访谈内容进行了定性分析。儿童和照顾者单独参加访谈;他们不是成对的参与者。参与研究的护理人员中有一半自己患有成骨不全症。对访谈进行编码,确定了六个主题:(1)多样化的学校住宿;(2)影响儿童学业成绩的oi相关因素;(3)与oi相关的身体活动差异;(4)儿童不同的社会动态;(5)成骨不全儿童在学校的情绪差异;(6)照顾者在子女教育中的心理社会经验。研究结果表明,成骨不全对儿童及其照顾者具有独特的学业、社会、身体和情感影响,并且可能需要特定的适应措施来取得学业成功。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Qualitative investigation of school experiences in children with osteogenesis imperfecta.

Osteogenesis imperfecta (OI) is a rare genetic chronic condition leading to fragile bones and frequent bone fractures with wide-reaching health implications. Current literature suggests that children with chronic diseases face unique challenges at school, yet research regarding educational concerns among those with OI is limited. The present study involved qualitative analysis of semi-structured interviews with 10 children with OI and 12 caregivers of a child with OI. Children and caregivers participated in the interviews individually; they were not dyads of participants. Half of the caregivers who participated had OI themselves. The interviews were coded, and six themes were identified: (1) diverse school accommodations; (2) OI-related factors affecting children's academics; (3) OI-related physical differences regarding physical activities; (4) children's varying social dynamics; (5) variability in children's emotions with OI at school; and (6) psychosocial experiences of caregivers in their child's education. Findings suggest that OI has unique academic, social, physical, and emotional implications for children and their caregivers, and specific accommodations may be necessary to achieve academic success.

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来源期刊
Childrens Health Care
Childrens Health Care PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH-
CiteScore
1.90
自引率
11.10%
发文量
28
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