Evaluation of quality of life and burden of caregivers of adolescents with autism spectrum disorder in Recife, State of Pernambuco, Brazil
Autor(a) principal: | |
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Data de Publicação: | 2020 |
Outros Autores: | , , , , , |
Tipo de documento: | Artigo |
Idioma: | por |
Título da fonte: | Research, Society and Development |
Texto Completo: | https://rsdjournal.org/index.php/rsd/article/view/9243 |
Resumo: | The aim of this study was to assess the quality of life and burden of caregivers of adolescents aged 10 to 19 years with autism spectrum disorder, enrolled in state and private public schools in Recife. Cross-sectional study with a sample of 57 caregivers (44 in the state public school and 13 in the private one). Data were collected using the instruments: The World Health Organization for Quality of Life (short version) in the assessment of quality of life and the Zarit Burden Interview Scale to assess the burden. The statistical program Statistical Package for Social Science, version 17.0, was used for analysis, with a significance level of p <0.05. The sample, mostly were mothers (89.5%) whose main occupation was that of the home (71.9%), with a monthly family income of up to 2 minimum wages (70.2%). They had a lower perception of global quality of life in the environmental domain (40.95), followed by the psychological (47.22), physical (51.44) and social (53.95) domains. The quality of life in the state public school system was assessed and the highest average was obtained for the social domain (56.25) and the lowest for the environmental domain (39.42). In the private network, the highest average was the physical domain (49.45) and the lowest for the environmental and social domains (identical in 46.15). The greatest global burden on caregivers was the state public school system (45.18). The quality of life and burden of caregivers is low and there is a need for state subsidies to improve the perception of quality of life and burden in the state public network. |
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Evaluation of quality of life and burden of caregivers of adolescents with autism spectrum disorder in Recife, State of Pernambuco, BrazilEvaluación de la calidad de vida y la carga de los cuidadores de adolescentes con trastorno del espectro autista en Recife, Estado de Pernambuco, BrasilAvaliação da qualidade de vida e sobrecarga de cuidadores de adolescentes com transtorno do espectro do autismo em Recife, Estado de Pernambuco, BrasilCaregiversDisabled peopleQuality of lifeOverload.CuidadoresPersonas con deficienciaCalidad de vidaSobrecarga.CuidadoresPessoas com deficiênciaQualidade de VidaSobrecarga.The aim of this study was to assess the quality of life and burden of caregivers of adolescents aged 10 to 19 years with autism spectrum disorder, enrolled in state and private public schools in Recife. Cross-sectional study with a sample of 57 caregivers (44 in the state public school and 13 in the private one). Data were collected using the instruments: The World Health Organization for Quality of Life (short version) in the assessment of quality of life and the Zarit Burden Interview Scale to assess the burden. The statistical program Statistical Package for Social Science, version 17.0, was used for analysis, with a significance level of p <0.05. The sample, mostly were mothers (89.5%) whose main occupation was that of the home (71.9%), with a monthly family income of up to 2 minimum wages (70.2%). They had a lower perception of global quality of life in the environmental domain (40.95), followed by the psychological (47.22), physical (51.44) and social (53.95) domains. The quality of life in the state public school system was assessed and the highest average was obtained for the social domain (56.25) and the lowest for the environmental domain (39.42). In the private network, the highest average was the physical domain (49.45) and the lowest for the environmental and social domains (identical in 46.15). The greatest global burden on caregivers was the state public school system (45.18). The quality of life and burden of caregivers is low and there is a need for state subsidies to improve the perception of quality of life and burden in the state public network.El objetivo de este estudio fue evaluar la calidad de vida y la carga de los cuidadores de adolescentes de 10 a 19 años con trastorno del espectro autista, matriculados en escuelas públicas estatales y privadas de Recife. Estudio transversal con una muestra de 57 cuidadores (44 en la escuela pública estatal y 13 en la privada). Los datos fueron recolectados utilizando los instrumentos: Organización Mundial de la Salud para la Calidad de Vida (versión corta) en la evaluación de la calidad de vida y la Escala Zarit Burden Interview Scale para evaluar la carga. Para el análisis se utilizó el programa estadístico Statistical Package for Social Science, versión 17.0, con un nivel de significancia de p <0.05. La muestra, en su mayoría fueron madres (89,5%) cuya ocupación principal era la del hogar (71,9%), con un ingreso familiar mensual de hasta 2 salarios mínimos (70,2%). Tenían una menor percepción de la calidad de vida global en el dominio ambiental (40,95), seguido de los dominios psicológico (47,22), físico (51,44) y social (53,95). Se evaluó la calidad de vida en el sistema escolar público estatal y se obtuvo el promedio más alto para el dominio social (56,25) y el más bajo para el dominio ambiental (39,42). En la red privada, el promedio más alto fue el dominio físico (49,45) y el más bajo para los dominios ambiental y social (idéntico en 46,15). La mayor carga global para los cuidadores fue el sistema de escuelas públicas estatales (45,18). La calidad de vida y la carga de los cuidadores es baja y se necesitan subsidios estatales para mejorar la percepción de la calidad de vida y la carga en la red pública estatal.O objetivo desse trabalho foi avaliar a qualidade de vida e a sobrecarga de cuidadores de adolescentes de 10 a 19 anos de idade com transtorno do espectro do autismo, matriculados nas escolas públicas estaduais e privadas em Recife. Estudo transversal com amostra de 57 cuidadores (44 na escola pública estadual e 13 na privada). Os dados foram coletados através dos instrumentos: The World Health Organization for Quality of Life (versão abreviada) na avaliação da qualidade de vida e Zarit Burden Interview Scale para avaliação da sobrecarga. Para análise foi utilizado o programa estatístico Statistical Package for Social Science, versão 17.0, com nível de significância p<0,05. A amostra, em sua maioria eram mães (89,5%) que tinham como principal ocupação a do lar (71,9%), com renda familiar mensal de até 2 salários mínimos (70,2%). Apresentaram uma menor percepção de qualidade de vida global no domínio ambiental (40,95), seguidos pelos domínios psicológico (47,22), físico (51,44) e social (53,95). Avaliou-se a qualidade de vida na rede escolar pública estadual e obteve-se maior média para o domínio social (56,25) e o menor o ambiental (39,42). Na rede privada a maior média foi o domínio físico (49,45) e as menores para os domínios ambiental e social (idênticas em 46,15). A maior sobrecarga global para os cuidadores foi à rede escolar pública estadual (45,18). A qualidade de vida e sobrecargas dos cuidadores é baixa e existe a necessidade de subsídio do Estado para a melhoria da percepção de qualidade de vida e sobrecarga na rede pública estadual.Research, Society and Development2020-10-20info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfhttps://rsdjournal.org/index.php/rsd/article/view/924310.33448/rsd-v9i10.9243Research, Society and Development; Vol. 9 No. 10; e8059109243Research, Society and Development; Vol. 9 Núm. 10; e8059109243Research, Society and Development; v. 9 n. 10; e80591092432525-3409reponame:Research, Society and Developmentinstname:Universidade Federal de Itajubá (UNIFEI)instacron:UNIFEIporhttps://rsdjournal.org/index.php/rsd/article/view/9243/8230Copyright (c) 2020 Ivson Gouveia Cursino; Rogéria Sandra Tenório Ferro Cursino; Hiuryellen da Silva Xavier; Ana Carolina Pereira Gomes; Híttalo Carlos Rodrigues de Almeida; Viviane Colares Soares de Andrade Amorim; Sandra Conceição Maria Vieirahttps://creativecommons.org/licenses/by/4.0info:eu-repo/semantics/openAccessCursino, Ivson GouveiaCursino, Rogéria Sandra Tenório FerroGomes, Ana Carolina PereiraXavier, Hiuryellen da Silva Almeida, Híttalo Carlos Rodrigues deAmorim, Viviane Colares Soares de AndradeVieira, Sandra Conceição Maria2020-10-31T12:03:23Zoai:ojs.pkp.sfu.ca:article/9243Revistahttps://rsdjournal.org/index.php/rsd/indexPUBhttps://rsdjournal.org/index.php/rsd/oairsd.articles@gmail.com2525-34092525-3409opendoar:2024-01-17T09:31:34.431255Research, Society and Development - Universidade Federal de Itajubá (UNIFEI)false |
dc.title.none.fl_str_mv |
Evaluation of quality of life and burden of caregivers of adolescents with autism spectrum disorder in Recife, State of Pernambuco, Brazil Evaluación de la calidad de vida y la carga de los cuidadores de adolescentes con trastorno del espectro autista en Recife, Estado de Pernambuco, Brasil Avaliação da qualidade de vida e sobrecarga de cuidadores de adolescentes com transtorno do espectro do autismo em Recife, Estado de Pernambuco, Brasil |
title |
Evaluation of quality of life and burden of caregivers of adolescents with autism spectrum disorder in Recife, State of Pernambuco, Brazil |
spellingShingle |
Evaluation of quality of life and burden of caregivers of adolescents with autism spectrum disorder in Recife, State of Pernambuco, Brazil Cursino, Ivson Gouveia Caregivers Disabled people Quality of life Overload. Cuidadores Personas con deficiencia Calidad de vida Sobrecarga. Cuidadores Pessoas com deficiência Qualidade de Vida Sobrecarga. |
title_short |
Evaluation of quality of life and burden of caregivers of adolescents with autism spectrum disorder in Recife, State of Pernambuco, Brazil |
title_full |
Evaluation of quality of life and burden of caregivers of adolescents with autism spectrum disorder in Recife, State of Pernambuco, Brazil |
title_fullStr |
Evaluation of quality of life and burden of caregivers of adolescents with autism spectrum disorder in Recife, State of Pernambuco, Brazil |
title_full_unstemmed |
Evaluation of quality of life and burden of caregivers of adolescents with autism spectrum disorder in Recife, State of Pernambuco, Brazil |
title_sort |
Evaluation of quality of life and burden of caregivers of adolescents with autism spectrum disorder in Recife, State of Pernambuco, Brazil |
author |
Cursino, Ivson Gouveia |
author_facet |
Cursino, Ivson Gouveia Cursino, Rogéria Sandra Tenório Ferro Gomes, Ana Carolina Pereira Xavier, Hiuryellen da Silva Almeida, Híttalo Carlos Rodrigues de Amorim, Viviane Colares Soares de Andrade Vieira, Sandra Conceição Maria |
author_role |
author |
author2 |
Cursino, Rogéria Sandra Tenório Ferro Gomes, Ana Carolina Pereira Xavier, Hiuryellen da Silva Almeida, Híttalo Carlos Rodrigues de Amorim, Viviane Colares Soares de Andrade Vieira, Sandra Conceição Maria |
author2_role |
author author author author author author |
dc.contributor.author.fl_str_mv |
Cursino, Ivson Gouveia Cursino, Rogéria Sandra Tenório Ferro Gomes, Ana Carolina Pereira Xavier, Hiuryellen da Silva Almeida, Híttalo Carlos Rodrigues de Amorim, Viviane Colares Soares de Andrade Vieira, Sandra Conceição Maria |
dc.subject.por.fl_str_mv |
Caregivers Disabled people Quality of life Overload. Cuidadores Personas con deficiencia Calidad de vida Sobrecarga. Cuidadores Pessoas com deficiência Qualidade de Vida Sobrecarga. |
topic |
Caregivers Disabled people Quality of life Overload. Cuidadores Personas con deficiencia Calidad de vida Sobrecarga. Cuidadores Pessoas com deficiência Qualidade de Vida Sobrecarga. |
description |
The aim of this study was to assess the quality of life and burden of caregivers of adolescents aged 10 to 19 years with autism spectrum disorder, enrolled in state and private public schools in Recife. Cross-sectional study with a sample of 57 caregivers (44 in the state public school and 13 in the private one). Data were collected using the instruments: The World Health Organization for Quality of Life (short version) in the assessment of quality of life and the Zarit Burden Interview Scale to assess the burden. The statistical program Statistical Package for Social Science, version 17.0, was used for analysis, with a significance level of p <0.05. The sample, mostly were mothers (89.5%) whose main occupation was that of the home (71.9%), with a monthly family income of up to 2 minimum wages (70.2%). They had a lower perception of global quality of life in the environmental domain (40.95), followed by the psychological (47.22), physical (51.44) and social (53.95) domains. The quality of life in the state public school system was assessed and the highest average was obtained for the social domain (56.25) and the lowest for the environmental domain (39.42). In the private network, the highest average was the physical domain (49.45) and the lowest for the environmental and social domains (identical in 46.15). The greatest global burden on caregivers was the state public school system (45.18). The quality of life and burden of caregivers is low and there is a need for state subsidies to improve the perception of quality of life and burden in the state public network. |
publishDate |
2020 |
dc.date.none.fl_str_mv |
2020-10-20 |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
https://rsdjournal.org/index.php/rsd/article/view/9243 10.33448/rsd-v9i10.9243 |
url |
https://rsdjournal.org/index.php/rsd/article/view/9243 |
identifier_str_mv |
10.33448/rsd-v9i10.9243 |
dc.language.iso.fl_str_mv |
por |
language |
por |
dc.relation.none.fl_str_mv |
https://rsdjournal.org/index.php/rsd/article/view/9243/8230 |
dc.rights.driver.fl_str_mv |
https://creativecommons.org/licenses/by/4.0 info:eu-repo/semantics/openAccess |
rights_invalid_str_mv |
https://creativecommons.org/licenses/by/4.0 |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
application/pdf |
dc.publisher.none.fl_str_mv |
Research, Society and Development |
publisher.none.fl_str_mv |
Research, Society and Development |
dc.source.none.fl_str_mv |
Research, Society and Development; Vol. 9 No. 10; e8059109243 Research, Society and Development; Vol. 9 Núm. 10; e8059109243 Research, Society and Development; v. 9 n. 10; e8059109243 2525-3409 reponame:Research, Society and Development instname:Universidade Federal de Itajubá (UNIFEI) instacron:UNIFEI |
instname_str |
Universidade Federal de Itajubá (UNIFEI) |
instacron_str |
UNIFEI |
institution |
UNIFEI |
reponame_str |
Research, Society and Development |
collection |
Research, Society and Development |
repository.name.fl_str_mv |
Research, Society and Development - Universidade Federal de Itajubá (UNIFEI) |
repository.mail.fl_str_mv |
rsd.articles@gmail.com |
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1797052741539856384 |