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自闭症儿童家长的感知社会支持与生活质量

Perceived social support and quality of life of parents of children with Autism.

作者信息

Kuru N, Piyal B

机构信息

Department of Public Health Nursing, Faculty of Nursing, Hacettepe University, Ankara, Turkey.

Department of Public Health, Faculty of Medicine, Ankara University, Ankara, Turkey.

出版信息

Niger J Clin Pract. 2018 Sep;21(9):1182-1189. doi: 10.4103/njcp.njcp_13_18.

Abstract

BACKGROUND

When examining the incidence of autism, however, children should not be considered independent of their parents, as this collection of disorders also affects the life of their family members. Having a disabled child affects the relationships with the family and friends, and the social and work life of families. The quality of life of these families is discussed in terms of financial aspects, health, support of family members, values, occupation, family relations, and individual support dimensions of developmental disabilities. However, there are very limited studies on the relationship between perceived social support and quality of life of parents of children with autism, and none of these has been conducted in Turkey.

AIM

This study aimed to identify the perceived social support and quality of life of the parents of children with autism and to investigate the related factors.

STUDY DESIGN

The sample of the study consists of 90 parents who accepted to join the research studies. The participants enrolled in the study included 90 biological parents (31 mothers; 59 fathers). Eighteen children had both mother and father participate (all participants subsequently will be referred to as "parents").

METHODS

This was a descriptive cross-sectional study. A socio-demographic form, the EUROHIS Quality of Life Scale (EUROHIS QOL-8) and the Multi-Dimensional Scale of Perceived Social Support (MSPSS) were used for data collection.

RESULTS

The mean score on the EUROHIS QOL-8 was 26.17 ± 4.91 and that on the MSPSS was 51.06 ± 20.6. A statistically significant relationship was found between the EUROHIS QOL-8 and MSPSS scores (r = 0.524, P = 0.000). There were significant differences on the average score on the EUROHIS QOL-8 and MSPSS based on fathers' job status.

CONCLUSION

Our results provide important insights into the family experiences of parents of children with autism, and may aid the development of appropriate interventions to further support them. Providing support and understanding families of children with autism and their experiences, nurses, doctors and health professionals can positively affect their health outcomes. Healthcare professionals should focus on determining the needs of families to accordingly plan and implement appropriate programs.

摘要

背景

然而,在研究自闭症发病率时,儿童不应被视为独立于其父母,因为这类疾病也会影响其家庭成员的生活。有一个残疾儿童会影响家庭与家人及朋友的关系,以及家庭的社会和工作生活。这些家庭的生活质量在经济方面、健康状况、家庭成员的支持、价值观、职业、家庭关系以及发育障碍的个人支持维度等方面进行了讨论。然而,关于自闭症儿童家长所感受到的社会支持与生活质量之间关系的研究非常有限,且在土耳其尚未开展过此类研究。

目的

本研究旨在确定自闭症儿童家长所感受到的社会支持和生活质量,并调查相关因素。

研究设计

该研究样本包括90名同意参与研究的家长。参与研究的受试者包括90名亲生父母(31名母亲;59名父亲)。18名儿童的父母双方均参与(所有参与者随后将统一称为“家长”)。

方法

这是一项描述性横断面研究。使用社会人口学表格、欧洲生活质量量表(EUROHIS QOL - 8)和多维感知社会支持量表(MSPSS)进行数据收集。

结果

欧洲生活质量量表(EUROHIS QOL - 8)的平均得分为26.17±4.91,多维感知社会支持量表(MSPSS)的平均得分为51.06±20.6。欧洲生活质量量表(EUROHIS QOL - 8)得分与多维感知社会支持量表(MSPSS)得分之间存在显著的统计学关系(r = 0.524,P = 0.000)。基于父亲的工作状况,欧洲生活质量量表(EUROHIS QOL - 8)和多维感知社会支持量表(MSPSS)的平均得分存在显著差异。

结论

我们的研究结果为自闭症儿童家长的家庭经历提供了重要见解,并可能有助于制定进一步支持他们的适当干预措施。护士、医生和健康专业人员通过提供支持并理解自闭症儿童家庭及其经历,能够对他们的健康结果产生积极影响。医疗保健专业人员应专注于确定家庭的需求,以便相应地规划和实施适当的项目。

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