'I Wish the School Had a Better Understanding of the Diagnosis': parent perspectives on educational needs of students with sex chromosome aneuploidies.
'I Wish the School Had a Better Understanding of the Diagnosis': parent perspectives on educational needs of students with sex chromosome aneuploidies.
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DOI：
10.1111/1471-3802.12558
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发表时间：
2022-04
影响因子：
1.5
通讯作者：
Janusz, Jennifer
中科院分区：
文献类型：
--
作者：
Thompson, Talia;Stinnett, Nicole;Tartaglia, Nicole;Davis, Shanlee;Janusz, Jennifer
关键词：
患有性染色体非整倍性（SCA）的学生学习障碍的风险增加，通常需要在学校环境中提供个性化的支持。患有SCA等罕见疾病的学生的家长对孩子的教育经历有着独特的理解，并在制定成功的学校支持计划方面发挥着至关重要的作用。是项国际调查旨在归纳家长对学生的教育需要及支援的意见。5-21岁SCA青少年的父母（n = 305）提供了关于他们孩子教育的开放式问题的自由文本回答。使用生物生态系统框架的定性内容分析产生了三个总体主题。总体而言，家长确定了与SCA诊断相关的多种因素，这些因素是学习障碍，强烈需要以学校为基础的社会和情感支持，以及难以捉摸或不完整的教育支持计划。基于这些发现，我们建议发展强有力的家庭-学校伙伴关系，加强学校和儿童医疗团队之间的合作，并承认遗传条件在SCA学生的教育经历中发挥的重要作用。本研究亦探讨学校支援计划的具体建议，包括提供校本行为健康支援，以及明确教授执行功能策略。
Students with sex chromosome aneuploidies (SCAs) are at increased risk for learning disabilities and often require individualized supports in the school setting. Parents of students with rare disorders such as SCAs possess a unique understanding of their child’s educational experiences and play a crucial role in the development of successful school support plans. This international survey study aimed to inductively capture parent perspectives on educational needs and supports for students with SCAs. Parents of youth with SCAs ages 5–21 years (n = 305) provided free-text responses to open-ended questions about their child’s education. Qualitative content analysis using a bioecological systems framework resulted in three overarching themes. Overall, parents identified multiple factors related to the SCA diagnosis that act as barriers to learning, a strong need for school-based social and emotional supports, and elusive or incomplete educational support plans. Based on these findings, we recommend developing robust family-school partnerships, increased collaboration between the school and the child’s medical team, and acknowledgement of the significant role the genetic condition plays in the educational experiences of students with SCAs. Specific suggestions for school support plans for students with SCAs are explored, such as providing school-based behavioral health supports and explicit teaching of executive function strategies.
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影响因子：
1.1
作者：
Lundin, Linda
通讯作者：
Lundin, Linda
影响因子：
4.6
作者：
PENNINGTON, BF;BENDER, B;ROBINSON, A
通讯作者：
ROBINSON, A
DOI：
10.1002/ajmg.1490
发表时间：
2001-09-01
期刊：
AMERICAN JOURNAL OF MEDICAL GENETICS
影响因子：
--
作者：
Bender, BG;Linden, MG;Harmon, RJ
通讯作者：
Harmon, RJ
DOI：
10.1111/jppi.12221
发表时间：
2018-03-01
影响因子：
1.7
作者：
Eskow, Karen Goldrich;Summers, Jean Ann;Mitchell, Renae
通讯作者：
Mitchell, Renae
影响因子：
6.4
作者：
Phillips, Erin
通讯作者：
Phillips, Erin