Evaluation of quality of life and burden of caregivers of adolescents with autism spectrum disorder in Recife, State of Pernambuco, Brazil
DOI:
https://doi.org/10.33448/rsd-v9i10.9243Keywords:
Caregivers; Disabled people; Quality of life; Overload.Abstract
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.
References
Almeida, M. A. B., Gutierrez, G. L., Marques, R. (2012). Qualidade de vida: definição, conceitos e interfaces com outras áreas, de pesquisa. São Paulo, SP: Escola de Artes, Ciências e Humanidades – EACH/USP.
Aragão A. T. M., Milagres, E., Figlie, N. B. (2009). Qualidade de vida e desesperança em familiares de dependentes químicos. Psico-USF, 14(1), 117-123.
Braccialli, L. M. P., Bagagi, O. S., Sankako, N. A., Araújo, R. C. T. (2012). Qualidade de vida de cuidadores de pessoas com necessidades especiais. Rev. Bras. Educ. Espec, 18(1), 13-126.
Byzatto L. L., Beresin R. (2008). Qualidade de vida dos pais de crianças portadoras da síndrome de Down. Einstein, 6(2), 175-181.
Camargos, A. C. R., Lacerda, T. T. B. D., Viana, S. O., Pinto, L.R.A., Fonseca, M. L. S. (2009). Avaliação da sobrecargado cuidador de crianças com paralisia cerebral através da escala Burden Interview. Rev Bras Saúde MaternInfant, 9(1), 31-37.
Chapell, N. L., Reid, R.C. (2002). Burden and well-being among caregivers: examining the distinction. Gerontologist, 42(6), 772-780.
Chaim, M. P. M., Costa Neto, S. B., Pereira, A. F., & Grossi, F. R. S. (2019). Qualidade de vida de cuidadores de crianças com transtorno do espectro autista: revisão da literatura. Cadernos de Pós-Graduação em Distúrbios do Desenvolvimento, 19(1), 9-34.
Fleck, M. P. A et al. (2000). Aplicação da versão em português do instrumento abreviado de avaliação da qualidade de vida “WHOQOL-bref”. Rev de Saúde Pública, 34(2), 32-39.
Lemos, A. C. O., Katz, C. R. T. (2012). Condições de saúde bucal e acesso ao tratamento odontológico de pacientes com paralisia cerebral atendidos em um centro de referência do Nordeste - Brasil. Rev. CEFAC, 14(5), 861-871.
Oliveira, E. F., Limongi, S. C. O. (2011). Qualidade de vida de pais/cuidadores de crianças e adolescentes com síndrome de Down. Jornal da Sociedade Brasileira de Fonoaudiologia, 23(4), 2-10.
Organização Mundial da Saúde (OMS) (1993). Classificação de transtornos mentais e de comportamento da CID-10. Porto Alegre: Artes Médicas.
Pereira A.S. et al. (2018). Metodologia da pesquisa científica. [e-book]. Santa Maria. Ed. UAB/NTE/UFSM.
Pimenta, R. A., Rodrigues, L. A., Gregoul, M. (2010) Avaliação da qualidade de vida e sobrecarga de pessoas com deficiência intelectual. Revista Brasileira de Ciências da Saúde, 14(3), 69-76.
Raina, P., O’donnell, M., Rosenbaum, P., Brehaut, J., Walter, S.D., Russell, D., et al. (2005). The health andwell-being of caregivers of children with cerebral palsy. Pediatrics, 115(6), 626-636.
Rondine C. A., Justo J.S., Filho, F.S.T., Lucca, J.A.C., Oliveira, P.A. (2011). Análise das relações entre qualidade de vida e sobrecarga de cuidadores de idosos de Assis, SP. Estudos e pesquisas em psicologia. 11(3), 796-820.
Scazufca, M. (2002). Brazilian version of the Burden Interview scale for the assessment of burden of care in casres of the people with mental illnesses. Revista Brasileira de Psiquiatria, 24(1), 12-17.
Vilarta, R. (2014). Qualidade de Vida e Políticas Públicas: Saúde, Lazer e Atividade Física. Campinas: IPES Editorial.
Downloads
Published
How to Cite
Issue
Section
License
Copyright (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 Vieira
This work is licensed under a Creative Commons Attribution 4.0 International License.
Authors who publish with this journal agree to the following terms:
1) Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution License that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.
2) Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.
3) Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work.