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

INTRODUCTION: The 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. METHODS: We used...

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Autores principales: Eapen, Valsamma, Karlov, Lisa, John, James Rufus, Beneytez, Carmen, Grimes, Poppy Z., Kang, Ying Qi, Mardare, Ileana, Minca, Dana Galieta, Voicu, Laura, Malek, Khasnur Abd, Ramkumar, Aishworiya, Stefanik, Krisztina, Gyori, Miklos, Volgyesi-Molnar, Marta
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9996029/
https://www.ncbi.nlm.nih.gov/pubmed/36910746
http://dx.doi.org/10.3389/fpsyg.2023.1022094
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author Eapen, Valsamma
Karlov, Lisa
John, James Rufus
Beneytez, Carmen
Grimes, Poppy Z.
Kang, Ying Qi
Mardare, Ileana
Minca, Dana Galieta
Voicu, Laura
Malek, Khasnur Abd
Ramkumar, Aishworiya
Stefanik, Krisztina
Gyori, Miklos
Volgyesi-Molnar, Marta
author_facet Eapen, Valsamma
Karlov, Lisa
John, James Rufus
Beneytez, Carmen
Grimes, Poppy Z.
Kang, Ying Qi
Mardare, Ileana
Minca, Dana Galieta
Voicu, Laura
Malek, Khasnur Abd
Ramkumar, Aishworiya
Stefanik, Krisztina
Gyori, Miklos
Volgyesi-Molnar, Marta
author_sort Eapen, Valsamma
collection PubMed
description INTRODUCTION: The 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. METHODS: We 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 CONCLUSION: We 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.
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spelling pubmed-99960292023-03-10 Quality of life in parents of autistic children: A transcultural perspective Eapen, Valsamma Karlov, Lisa John, James Rufus Beneytez, Carmen Grimes, Poppy Z. Kang, Ying Qi Mardare, Ileana Minca, Dana Galieta Voicu, Laura Malek, Khasnur Abd Ramkumar, Aishworiya Stefanik, Krisztina Gyori, Miklos Volgyesi-Molnar, Marta Front Psychol Psychology INTRODUCTION: The 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. METHODS: We 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 CONCLUSION: We 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. Frontiers Media S.A. 2023-02-23 /pmc/articles/PMC9996029/ /pubmed/36910746 http://dx.doi.org/10.3389/fpsyg.2023.1022094 Text en Copyright © 2023 Eapen, Karlov, John, Beneytez, Grimes, Kang, Mardare, Minca, Voicu, Malek, Ramkumar, Stefanik, Gyori and Volgyesi-Molnar. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Psychology
Eapen, Valsamma
Karlov, Lisa
John, James Rufus
Beneytez, Carmen
Grimes, Poppy Z.
Kang, Ying Qi
Mardare, Ileana
Minca, Dana Galieta
Voicu, Laura
Malek, Khasnur Abd
Ramkumar, Aishworiya
Stefanik, Krisztina
Gyori, Miklos
Volgyesi-Molnar, Marta
Quality of life in parents of autistic children: A transcultural perspective
title Quality of life in parents of autistic children: A transcultural perspective
title_full Quality of life in parents of autistic children: A transcultural perspective
title_fullStr Quality of life in parents of autistic children: A transcultural perspective
title_full_unstemmed Quality of life in parents of autistic children: A transcultural perspective
title_short Quality of life in parents of autistic children: A transcultural perspective
title_sort quality of life in parents of autistic children: a transcultural perspective
topic Psychology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9996029/
https://www.ncbi.nlm.nih.gov/pubmed/36910746
http://dx.doi.org/10.3389/fpsyg.2023.1022094
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