Evaluation of quality of life and burden of caregivers of adolescents with autism spectrum disorder in Recife, State of Pernambuco, Brazil

Detalhes bibliográficos
Autor(a) principal: Cursino, Ivson Gouveia
Data de Publicação: 2020
Outros Autores: 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
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.
id UNIFEI_e64616a3517b2f07b488931c89fa6dc4
oai_identifier_str oai:ojs.pkp.sfu.ca:article/9243
network_acronym_str UNIFEI
network_name_str Research, Society and Development
repository_id_str
spelling 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
_version_ 1797052741539856384