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一项关于新诊断为自闭症谱系障碍和沟通困难儿童母亲的家庭生活质量、疾病认知及应对方式的前瞻性研究。

A Prospective Study of the Family Quality of Life, Illness Perceptions, and Coping in Mothers of Children Newly Diagnosed with Autism Spectrum Disorder and Communication Difficulties.

作者信息

Papadopoulos Angelos, Tsapara Angeliki, Gryparis Alexandros, Tafiadis Dionysios, Trimmis Nikolaos, Plotas Panagiotis, Skapinakis Petros, Tzoufi Meropi, Siafaka Vassiliki

机构信息

School of Humanities and Social Sciences, University of Patras, 26504 Patras, Greece.

General Children's Hospital of Patras "Karamandaneio", 26331 Patras, Greece.

出版信息

Eur J Investig Health Psychol Educ. 2024 Aug 1;14(8):2187-2204. doi: 10.3390/ejihpe14080146.

Abstract

(1) Background: This study assesses the impact of mothers' illness perceptions about autism spectrum disorder and their coping strategies on the family's quality of life during the initial period following diagnosis and one year afterward. (2) Method: The sample consisted of 53 mothers of children newly diagnosed with autism spectrum disorder and having communication difficulties who completed the following: the Beach Center Family Quality of Life Scale, the Brief Illness Perception Questionnaire, and the Brief-COPE. (3) Results: The findings revealed a moderate family quality of life in the initial assessment and a lack of a statistically significant change one year later. Notably, statistically significant changes were observed in coping strategies, as in the second assessment, and the score in denial and self-blame decreased. Pearson and Eta analyses indicated several correlations between socio-demographic characteristics, illness perceptions, coping strategies, and family quality of life. Multiple regression analysis showed that positive reframing was positively associated with total family quality of life in the initial period following diagnosis and one year afterward, while self-blame was associated with poorer quality of life in the time after diagnosis. Furthermore, the belief about the controllability of the disorder was correlated with better family quality of life one year after the diagnosis. (4) Conclusions: Illness perceptions and coping can be considered as predictors of family quality of life outcomes one year after the diagnosis of autism spectrum disorder. The focus of interventions, apart from controlling the disorder's symptoms, should aim to strengthen specific strategies and weaken others.

摘要

(1)背景:本研究评估母亲对自闭症谱系障碍的疾病认知及其应对策略对诊断后初期及之后一年家庭生活质量的影响。(2)方法:样本包括53名新诊断出自闭症谱系障碍且有沟通困难儿童的母亲,她们完成了以下问卷:海滩中心家庭生活质量量表、简短疾病认知问卷和简短应对方式问卷。(3)结果:研究结果显示,初次评估时家庭生活质量中等,一年后无统计学上的显著变化。值得注意的是,应对策略有统计学上的显著变化,如在第二次评估中,否认和自责得分下降。皮尔逊分析和埃塔分析表明,社会人口学特征、疾病认知、应对策略和家庭生活质量之间存在若干相关性。多元回归分析表明,积极重新评价在诊断后初期及一年后与家庭生活质量总分呈正相关,而自责与诊断后时期较差的生活质量相关。此外,对疾病可控性的信念与诊断一年后的较好家庭生活质量相关。(4)结论:疾病认知和应对可被视为自闭症谱系障碍诊断一年后家庭生活质量结果的预测因素。除了控制疾病症状外,干预重点应旨在加强特定策略并削弱其他策略。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ea73/11353484/c886a80cc486/ejihpe-14-00146-g001.jpg

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