Quality of life in parents of autistic children: A transcultural perspective

被引:18
作者
Eapen, Valsamma [1 ]
Karlov, Lisa [1 ]
John, James Rufus [1 ]
Beneytez, Carmen [2 ]
Grimes, Poppy Z. Z. [3 ,4 ]
Kang, Ying Qi [5 ,6 ]
Mardare, Ileana [7 ]
Minca, Dana Galieta [7 ]
Voicu, Laura [7 ]
Malek, Khasnur Abd [8 ]
Ramkumar, Aishworiya [5 ,6 ]
Stefanik, Krisztina [9 ,10 ]
Gyori, Miklos [10 ,11 ]
Volgyesi-Molnar, Marta [10 ,11 ]
机构
[1] Univ New South Wales, Fac Med, Discipline Psychiat, Sydney, NSW, Australia
[2] Consejeria Educ Madrid, Equipo Especif Alterac Graves Desarrollo, Madrid, Spain
[3] Swalcliffe Pk Sch CIO, Swalcliffe, Oxon, England
[4] Univ Edinburgh, Ctr Clin Brain Sci, Div Psychiat, Edinburgh, Scotland
[5] Natl Univ Singapore Hosp, Khoo Teck Puat Natl Univ Childrens Med Inst KTP NU, Dept Paediat, Singapore, Singapore
[6] Natl Univ Singapore, Yong Loo Lin Sch Med, Dept Paediat, Singapore, Singapore
[7] Carol Davila Univ Med & Pharm Bucharest, Bucharest, Romania
[8] Univ Teknol MARA UiTM, Fac Med, Dept Primary Care Med, Sungai Buloh, Malaysia
[9] ELTE Univ Budapest, Inst Special Needs Educ People Atyp Behav & Cognit, Budapest, Hungary
[10] HAS ELTE Autism Educ Res Grp, Budapest, Hungary
[11] ELTE Univ, Inst Psychol Special Needs, Budapest, Hungary
关键词
autism; quality of life; carers; parents; transcultural; SPECTRUM DISORDER; MOTHERS;
D O I
10.3389/fpsyg.2023.1022094
中图分类号
B84 [心理学];
学科分类号
04 ; 0402 ;
摘要
IntroductionThe concepts of health, illness, and disability as well as the perceptions of autism and quality of life (QoL) vary greatly across cultures and across time. This study sought to explore the interplay of culture on QoL and impact on parents caring for autistic children. MethodsWe used a transcultural dataset from seven countries (Australia, Hungary, Malaysia, Romania, Singapore, Spain, and the United Kingdom) with participating parents/carers reporting on the Quality of Life in Autism (QoLA) questionnaire. The QoLA questionnaire is a validated measure of QoL for parents of autistic children, with Part A subscale measuring parental QoL and part B subscale assessing the parental impact of the child's autism spectrum disorder (ASD) symptoms or features. We used the Quade's ranked analysis of covariance to determine significant differences between the countries in relation to QoLA Part A and Part B scores while adjusting for baseline differences using covariates such as parents' gender, child's age, and gender. Additionally, a post-hoc analysis with Bonferroni correction was also conducted to examine multiple pairwise comparisons. Results and conclusionWe found that while the effect of features of ASD (Part B subscale) stayed strongly comparable between cultures, the self-reported parental QoL was most likely determined by different aspects of culture in different countries. It is concluded that while the ASD symptoms or features appear to affect parents in the same way across different countries, the parental QoL may be a culturally informed construct.
引用
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页数:9
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