成长与血友病:一组墨西哥青少年的生活质量和学校功能。

Q2 Social Sciences
Continuity in Education Pub Date : 2025-03-21 eCollection Date: 2025-01-01 DOI:10.5334/cie.148
Maricela Osorio-Guzmán, Carlos Prado-Romero, Santa Parrello
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引用次数: 0

摘要

血友病与许多其他慢性罕见疾病一样,对患者的日常活动造成限制,阻碍其生长,损害其生活质量以及心理社会功能和教育。然而,这些后果在受影响人群中的分布是不同的,这取决于可用的环境资源。本研究的目的是分析与57名墨西哥青少年(x¯= 14,16岁;SD = 1,91)的血友病患者,以确定特定的保护因素。采用了两种工具,一种是收集一般数据的特别问卷,另一种是儿科生活质量问卷(PedsQL)。参与者报告了诸如疼痛(75.4%)、行走困难(19.3%)和与其他青少年建立关系(17.5%)、缺课(78.9%)和/或跟不上学业活动(38.6%)等影响。患有A型血友病的青少年在调查社会关系的量表上表现出更高的水平(t = 2356;P < 0.05;δ = 1,44),学术功能(t = 3,713;P < 0.01;δ = 2,27)、心理健康(t = 2,561;P < 0.05;δ = 1,56)和总体健康相关生活质量(HRQoL) (t = 2,467;P < 0.05;δ = 1,49),结果表明血友病对青少年的整体发展和学业成绩有影响;但是,由于存在一些上下文变量/资源,这种影响会减少。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Growing Up with Haemophilia: Quality of Life and School Functioning of a Group of Mexican Adolescents.

Haemophilia, like many other chronic rare diseases, causes limitations to daily activities, stunting the growth and impairing the quality of life as well as the psychosocial functioning and education of those affected. However, these consequences are distributed differently among those affected depending on the available contextual resources. The aim of this study was to analyse the variables associated with the academic functioning and quality of life of a group of 57 Mexican adolescents ( x ¯ = 14,16 years old; SD = 1,91) suffering from haemophilia, in order to identify specific protective factors. Two tools were employed, an ad hoc questionnaire to collect general data and the Paediatric Quality of Life Questionnaire (PedsQL). The participants reported repercussions such as pain (75.4%), having difficulties walking (19.3%) and building relationships with other adolescents (17.5%), missed school days (78.9%), and/or having trouble keeping up with academic activities (38.6%). Adolescents with Type A Haemophilia displayed higher levels on the scales investigating social relations (t = 2,356; p < 0,05; δ = 1,44), academic functioning (t = 3,713; p < 0,01; δ = 2,27), psychosocial health (t = 2,561; p < 0,05; δ = 1,56), and total health-related quality of life (HRQoL) (t = 2,467; p < 0,05; δ = 1,49) than their peers with Type B. The results indicate that haemophilia has an impact on the adolescents' global development and their academic performance; however, this impact is reduced by the presence of some of contextual variables/resources.

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来源期刊
Continuity in Education
Continuity in Education Social Sciences-Education
CiteScore
2.80
自引率
0.00%
发文量
4
审稿时长
22 weeks
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