Cuesta-Gómez José Luis, De la Fuente-Anuncibay R Raquel, Vidriales-Fernández Ruth, Ortega-Camarero Maria Teresa
Department of Education, University of Burgos, 09001, Burgos, Spain.
Confederación Autismo España, Madrid, Spain.
Heliyon. 2022 Mar 25;8(3):e09193. doi: 10.1016/j.heliyon.2022.e09193. eCollection 2022 Mar.
Among the factors that influence the quality of life of people with Autism Spectrum Disorder (ASD), physical activity and sport are key dimensions of physical well-being. Few studies take into account the perspectives of people with ASD in order to understand the extent of physical well-being and their subjective perception of it. The development of a system of quality of life indicators related to physical activity and sport for people with ASD and their analysis is the aim of this study, providing guidelines for improvement. A study was carried out with a sample of 276 people, professionals (n = 143), family members (n = 73) and people with ASD (n = 60). The people with ASD in the sample belonged to three age categories: children aged 8-12 years, adolescents aged 12-18 years and adults over 18 years. The research team used a qualitative methodology in the collection of information. They adapted three questionnaires, with validated quality of life scales, to guide the interviews and also applied them in the design of the focus group protocols. Subsequently, the research team analysed the information collected in the focus groups with families and professionals using a DELPHI method. A system for coding the responses and qualitative analysis of the responses was also prepared for the analysis of the data by the research team. Finally, the information obtained was compared with a group of representative experts. The results concluded with the elaboration of a system of quality of life indicators related to the dimension of physical well-being, as well as guidelines and proposals that bring together the perspectives of people with ASD in relation to the practice of sport and physical activity. There is a need to increase the practice of sport among people with ASD in order to promote their health, social participation and personal satisfaction. It is concluded that it is not possible to obtain a broad picture of the quality of life of people with ASD and their families due to lack of information. However, the method and the results obtained represent a first approach at national level to increase knowledge about the quality of life of people with ASD.
在影响自闭症谱系障碍(ASD)患者生活质量的因素中,体育活动和运动是身体健康的关键维度。很少有研究考虑ASD患者的观点,以了解他们身体健康的程度及其主观感受。本研究的目的是开发一套与ASD患者体育活动和运动相关的生活质量指标体系并进行分析,为改善提供指导方针。对276人进行了一项研究,其中包括专业人员(n = 143)、家庭成员(n = 73)和ASD患者(n = 60)。样本中的ASD患者分为三个年龄组:8至12岁的儿童、12至18岁的青少年和18岁以上的成年人。研究团队采用定性方法收集信息。他们改编了三份带有经过验证的生活质量量表的问卷,以指导访谈,并将其应用于焦点小组协议的设计。随后,研究团队使用德尔菲法分析了与家庭和专业人员的焦点小组中收集到的信息。研究团队还准备了一个用于对回复进行编码和定性分析的系统,以分析数据。最后,将获得的信息与一组有代表性的专家进行了比较。结果得出了一套与身体健康维度相关的生活质量指标体系,以及汇集了ASD患者在运动和体育活动实践方面观点的指导方针和建议。有必要增加ASD患者的体育活动实践,以促进他们的健康、社会参与和个人满意度。结论是,由于缺乏信息,无法全面了解ASD患者及其家庭的生活质量。然而,该方法和获得的结果代表了国家层面在增加对ASD患者生活质量了解方面的首次尝试。