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Expressed Emotion in Families of Children With and Without Autism Spectrum Disorder, Cerebral Palsy and Down Syndrome: Relations with Parenting Stress and Parenting Behaviors.自闭症谱系障碍、脑瘫和唐氏综合征儿童家庭的情绪表达:与父母压力和育儿行为的关系。
J Autism Dev Disord. 2022 Apr;52(4):1789-1806. doi: 10.1007/s10803-021-05075-9. Epub 2021 May 22.
2
Health-related quality of life and coping strategies among families with Down syndrome children in South India.印度南部患有唐氏综合征儿童家庭的健康相关生活质量及应对策略
Med J Armed Forces India. 2021 Apr;77(2):187-193. doi: 10.1016/j.mjafi.2020.07.010. Epub 2020 Oct 9.
3
Coping strategies adopted by Iranian families of children with Down syndrome: A qualitative study.伊朗唐氏综合征患儿家庭所采用的应对策略:一项定性研究。
Medicine (Baltimore). 2020 Jul 10;99(28):e20753. doi: 10.1097/MD.0000000000020753.
4
[Down Syndrome: Perception of Mothers and Fathers About Parenting a Child with Intellectual Disability].[唐氏综合征:父母对养育智障儿童的认知]
Prax Kinderpsychol Kinderpsychiatr. 2020 May;69(3):236-251. doi: 10.13109/prkk.2020.69.3.236.
5
Down syndrome.唐氏综合征。
Nat Rev Dis Primers. 2020 Feb 6;6(1):9. doi: 10.1038/s41572-019-0143-7.
6
Clinical Features and Treatment of Down Syndrome Arthropathy: Experience from Two US Tertiary Hospitals.唐氏综合征关节炎的临床特征与治疗:来自美国两家三级医院的经验。
Paediatr Drugs. 2019 Feb;21(1):33-39. doi: 10.1007/s40272-018-0322-0.
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Validation and reliability of the Abbreviated World Health Organization Quality of Life Instrument (WHOQOL-BREF) in the hospitalized trauma population.《世界卫生组织生活质量简表(WHOQOL-BREF)》在创伤住院患者中的效度与信度
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Does Informal Caregiving Lead to Parental Burnout? Comparing Parents Having (or Not) Children With Mental and Physical Issues.非正式照料会导致父母倦怠吗?比较有(或没有)患有心理和身体问题子女的父母。
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9
Determination of Spearman Correlation Coefficient () to Evaluate the Linear Association of Dermal Collagen and Elastic Fibers in the Perspectives of Skin Injury.测定斯皮尔曼相关系数()以从皮肤损伤角度评估真皮胶原蛋白和弹性纤维的线性关联。
Dermatol Res Pract. 2018 May 2;2018:4512840. doi: 10.1155/2018/4512840. eCollection 2018.
10
Caregiver-Reported Quality of Life in Youth with Down Syndrome.唐氏综合征青少年的照料者报告的生活质量
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一家三级护理医院中唐氏综合征患儿父母的生活质量:沙特阿拉伯的一项定性研究

The quality of life of parents of children with down syndrome in a tertiary care hospital: A qualitative research study at Saudi Arabia.

作者信息

AlAhmari Fatimah Saeed, Alageel Ahmed Fawzi, Aldosari Maha Abdullah, Bagha Muhammed Younus

机构信息

Developmental & Behavioural Pediatrics, King Abdullah Specialized Children Hospital, National Guard Health Affairs, Riyadh, Saudi Arabia.

College of Medicine, King Saud Bin Abdulaziz for Health Sciences, Riyadh, Saudi Arabia.

出版信息

Ann Med Surg (Lond). 2022 Sep 5;81:104428. doi: 10.1016/j.amsu.2022.104428. eCollection 2022 Sep.

DOI:10.1016/j.amsu.2022.104428
PMID:36147136
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9486666/
Abstract

BACKGROUND

As children with down syndrome (DS) usually have significant morbidities, they can also represent a significant burden on their caregivers and impact their quality of life (QoL). We conducted this study to investigate whether or not having DS children can impact the different domains of the QoL of their caregivers in Saudi Arabia.

METHODS

This is a cross-sectional phenomenological qualitative research study that was conducted in a tertiary care hospital, Riyadh, Saudi Arabia. To assess the study outcomes, we used the WHOQOL-BREF to assess the different domains of the QoL.

RESULTS

We have included 261 caregivers to DS children that responded to our questionnaire. The mean (SD) scores for the WHOQOL-BREF domains were 84 (±15), 88 (±15), 41 (±10), and 105 (±24), including the physical, psychological, social relations, and environmental domains, respectively. There was a significant difference between all of the scores that have been reported for these domains (P-value <0.001). Furthermore, educational level and the number of children were significantly associated with the psychological and physical domains, while the number of children was the only significant variable with the social relation. Finally, educational level, number of children, and average monthly income were all significantly correlated with the environmental domain.

CONCLUSION

Our study indicates that the QoL of caregivers to DS children is significantly impacted in the different domains, indicating the urgent need to apply adequate interventions.

摘要

背景

由于唐氏综合征(DS)患儿通常有严重的发病率,他们也会给其照顾者带来巨大负担,并影响照顾者的生活质量(QoL)。我们开展这项研究,旨在调查在沙特阿拉伯,照顾患有DS的儿童是否会影响照顾者生活质量的不同领域。

方法

这是一项在沙特阿拉伯利雅得的一家三级护理医院进行的横断面现象学定性研究。为评估研究结果,我们使用世界卫生组织生活质量简表(WHOQOL-BREF)来评估生活质量的不同领域。

结果

我们纳入了261名对问卷做出回应的DS患儿的照顾者。WHOQOL-BREF各领域的平均(标准差)得分分别为84(±15)、88(±15)、41(±10)和105(±24),分别包括身体、心理、社会关系和环境领域。这些领域所报告的所有得分之间存在显著差异(P值<0.001)。此外,教育水平和子女数量与心理和身体领域显著相关,而子女数量是与社会关系唯一显著相关的变量。最后,教育水平、子女数量和平均月收入均与环境领域显著相关。

结论

我们的研究表明,DS患儿照顾者的生活质量在不同领域受到显著影响,这表明迫切需要采取适当的干预措施。