Quality of Life of Latin-American People with Neuromuscular Disorders and Their Families During the COVID-19 Pandemic

IF 1.3 Q3 EDUCATION, SPECIAL

Advances in Neurodevelopmental Disorders Pub Date : 2023-03-24 DOI:10.1007/s41252-023-00328-3

Javiera Ortega, Natalia Vázquez, Imanol Amayra Caro

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引用次数: 0

Abstract

Objectives

The COVID-19 pandemic has affected the entire population, especially the population with chronic diseases. This study aimed to describe the quality of life of children and adults with neuromuscular diseases and their caregivers during the COVID-19 pandemic.

Methods

A observational correlational study was conducted. Forty-seven participants, including adults with NMD and caregivers of children with NMD, took part in the study. The WHOQOL-BREF and PedsQL 4.0 GCS and FIM scales were used.

Results

The PedsQL indicated a mean of 55.85 (SD = 22.05) for children, and a mean of 55.76 (SD = 16.72) for caregivers. Adults reported a mean of 67 (SD = 22.5) for their general perception of quality of life, and a M = 53 (SD = 28.25) for their perception on health.

Conclusions

The results showed regular to low quality of life of all children, adults, and caregivers, mainly in the physical dimension for people with neuromuscular diseases, and in the concerns dimension for caregivers. These results warn about the physical and psychological vulnerability situation in which this population finds itself.

查看原文本刊更多论文

新冠肺炎大流行期间拉美神经肌肉疾病患者及其家人的生活质量。

目标：新冠肺炎大流行影响了整个人口，尤其是慢性病患者。本研究旨在描述新冠肺炎大流行期间患有神经肌肉疾病的儿童和成人及其护理人员的生活质量。方法：采用观察性相关研究。47名参与者参与了这项研究，其中包括患有NMD的成年人和患有NMD儿童的照顾者。使用WHOQOL-BREF和PedsQL 4.0 GCS和FIM量表。结果：PedsQL的平均值为55.85（SD = 22.05），平均55.76（SD = 16.72）。成年人报告的平均值为67（SD = 22.5）对生活质量的总体看法，以及M = 53（标准差 = 28.25）对健康的看法。结论：研究结果显示，所有儿童、成年人和照顾者的生活质量从正常到低，主要表现在神经肌肉疾病患者的身体方面和照顾者关心的方面。这些结果警告了这一群体所处的身体和心理脆弱状况。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Advances in Neurodevelopmental Disorders Social Sciences-Social Sciences (miscellaneous)

CiteScore

2.10

自引率

0.00%

发文量

期刊介绍： Advances in Neurodevelopmental Disorders publishes high-quality research in the broad area of neurodevelopmental disorders across the lifespan. Study participants may include individuals with:Intellectual and developmental disabilitiesGlobal developmental delayCommunication disordersLanguage disordersSpeech sound disordersChildhood-onset fluency disorders (e.g., stuttering)Social (e.g., pragmatic) communication disordersUnspecified communication disordersAutism spectrum disorder (ASD)Attention-deficit/hyperactivity disorder (ADHD), specified and unspecifiedSpecific learning disordersMotor disordersDevelopmental coordination disordersStereotypic movement disorderTic disorders, specified and unspecifiedOther neurodevelopmental disorders, specified and unspecifiedPapers may also include studies of participants with neurodegenerative disorders that lead to a decline in intellectual functioning, including Alzheimer’s disease, amyotrophic lateral sclerosis, Creutzfeldt-Jakob disease, vascular dementia, Lewy body dementia, frontotemporal dementia, corticobasal degeneration, Huntington’s disease, and progressive supranuclear palsy. The journal includes empirical, theoretical and review papers on a large variety of issues, populations, and domains, including but not limited to: diagnosis; incidence and prevalence; and educational, pharmacological, behavioral and cognitive behavioral, mindfulness, and psychosocial interventions across the life span. Animal models of basic research that inform the understanding and treatment of neurodevelopmental disorders are also welcomed. The journal is multidisciplinary and multi-theoretical, and encourages research from multiple specialties in the social sciences using quantitative and mixed-method research methodologies.