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The Impact of Health and Social Services on the Quality of Life in Families of Adults with Autism Spectrum Disorder (ASD): A Focus Group Study

Background: Autism spectrum disorder (ASD) is a complex developmental condition that affects the whole family. The gap between childrens’ needs and their satisfaction, especially regarding what concerns the presence of social and healthcare services, is still a source of burden, particularly after t...

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Autores principales: Correale, Cinzia, Borgi, Marta, Cirulli, Francesca, Laghi, Fiorenzo, Trimarco, Barbara, Ferraro, Maurizio, Venerosi, Aldina
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8869802/
https://www.ncbi.nlm.nih.gov/pubmed/35203938
http://dx.doi.org/10.3390/brainsci12020177
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author Correale, Cinzia
Borgi, Marta
Cirulli, Francesca
Laghi, Fiorenzo
Trimarco, Barbara
Ferraro, Maurizio
Venerosi, Aldina
author_facet Correale, Cinzia
Borgi, Marta
Cirulli, Francesca
Laghi, Fiorenzo
Trimarco, Barbara
Ferraro, Maurizio
Venerosi, Aldina
author_sort Correale, Cinzia
collection PubMed
description Background: Autism spectrum disorder (ASD) is a complex developmental condition that affects the whole family. The gap between childrens’ needs and their satisfaction, especially regarding what concerns the presence of social and healthcare services, is still a source of burden, particularly after the transition to adulthood. Our study aimed to gather a comprehensive view on how parents of adults with ASD perceive (and interact with) health and social services, and how the provision of care impacts family quality of life with the aim to advise ASD intervention programs. The goal is to identify specific areas of change useful to influence autism intervention strategies so that they more effectively meet the needs of young people with autism and their families. Methods: We conducted two focus groups with parents of young adults with ASD. A semi-structured focus group methodology was adopted. The QoL conceptual framework guided data collection and analysis as part of a directed theory-driven content analysis approach. Results: The lack of structured care pathways and the low level of integration of different services were the main limits reported by parents during the focus group, while a shared positive perception of the experience conducted together as caring families emerged. Conclusions: The experience here reported claims for a greater role of the institutions in order to facilitate the building of networks that are really inclusive for persons with autism in society and to support the implementation of innovative solutions for the welfare system. Furthermore, parents stressed the need for the provision of support to the family.
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spelling pubmed-88698022022-02-25 The Impact of Health and Social Services on the Quality of Life in Families of Adults with Autism Spectrum Disorder (ASD): A Focus Group Study Correale, Cinzia Borgi, Marta Cirulli, Francesca Laghi, Fiorenzo Trimarco, Barbara Ferraro, Maurizio Venerosi, Aldina Brain Sci Article Background: Autism spectrum disorder (ASD) is a complex developmental condition that affects the whole family. The gap between childrens’ needs and their satisfaction, especially regarding what concerns the presence of social and healthcare services, is still a source of burden, particularly after the transition to adulthood. Our study aimed to gather a comprehensive view on how parents of adults with ASD perceive (and interact with) health and social services, and how the provision of care impacts family quality of life with the aim to advise ASD intervention programs. The goal is to identify specific areas of change useful to influence autism intervention strategies so that they more effectively meet the needs of young people with autism and their families. Methods: We conducted two focus groups with parents of young adults with ASD. A semi-structured focus group methodology was adopted. The QoL conceptual framework guided data collection and analysis as part of a directed theory-driven content analysis approach. Results: The lack of structured care pathways and the low level of integration of different services were the main limits reported by parents during the focus group, while a shared positive perception of the experience conducted together as caring families emerged. Conclusions: The experience here reported claims for a greater role of the institutions in order to facilitate the building of networks that are really inclusive for persons with autism in society and to support the implementation of innovative solutions for the welfare system. Furthermore, parents stressed the need for the provision of support to the family. MDPI 2022-01-28 /pmc/articles/PMC8869802/ /pubmed/35203938 http://dx.doi.org/10.3390/brainsci12020177 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Correale, Cinzia
Borgi, Marta
Cirulli, Francesca
Laghi, Fiorenzo
Trimarco, Barbara
Ferraro, Maurizio
Venerosi, Aldina
The Impact of Health and Social Services on the Quality of Life in Families of Adults with Autism Spectrum Disorder (ASD): A Focus Group Study
title The Impact of Health and Social Services on the Quality of Life in Families of Adults with Autism Spectrum Disorder (ASD): A Focus Group Study
title_full The Impact of Health and Social Services on the Quality of Life in Families of Adults with Autism Spectrum Disorder (ASD): A Focus Group Study
title_fullStr The Impact of Health and Social Services on the Quality of Life in Families of Adults with Autism Spectrum Disorder (ASD): A Focus Group Study
title_full_unstemmed The Impact of Health and Social Services on the Quality of Life in Families of Adults with Autism Spectrum Disorder (ASD): A Focus Group Study
title_short The Impact of Health and Social Services on the Quality of Life in Families of Adults with Autism Spectrum Disorder (ASD): A Focus Group Study
title_sort impact of health and social services on the quality of life in families of adults with autism spectrum disorder (asd): a focus group study
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8869802/
https://www.ncbi.nlm.nih.gov/pubmed/35203938
http://dx.doi.org/10.3390/brainsci12020177
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