Qualidade de vida em cuidadores de crianças e adolescentes com Transtorno do Espectro Autista
estudo comparativo entre sexos
Resumen
Introducción: El Trastorno del Espectro Autista (TEA) es un trastorno del neurodesarrollo que a menudo se asocia con deficiencias sociales, dificultades de aprendizaje y autonomía, afectando directamente a la familia. En consecuencia, los cuidadores pueden experimentar una reducción de la calidad de vida. Objetivo: Evaluar la calidad de vida de los cuidadores de niños y adolescentes con TEA y compararla entre cuidadores de pacientes femeninos y masculinos. Métodos: Se aplicó entrevista semiestructurada y el instrumento WHOQOL-bref a 62 cuidadores de niños o adolescentes atendidos en el ambulatorio TEA de un hospital universitario de Ribeirão Preto. Resultados: La mayoría de la muestra estuvo conformada por madres (85%), “no blancas”, con educación secundaria completa e ingresos familiares por debajo de 2 salarios mínimos. Hubo un predominio de menor calidad de vida entre los cuidadores de niñas y adolescentes, en comparación con los cuidadores masculinos. Conclusión: Los cuidadores de niñas con diagnóstico de TEA se ven más afectados en su calidad de vida que los cuidadores de niños con la misma patología.
Keywords: “trastorno del espectro autista”; "Calidad de vida"; "Cuidadores"
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MIELE, F. G.; AMATTO, C. A. H. Transtorno do espectro autista: qualidade de vida e estresse em cuidadores e/ou familiares - revisão de literatura. Cadernos de Pós-Graduação em Distúrbios do Desenvolvimento, v. 16, n. 2, p. 89-102, 2016. doi: 10.5935/1809-4139.20160010.
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ØIEN, R.; EISEMANN, M. R. Brief Report: Parent-Reported Problems Related to Communication, Behavior and Interests in Children with Autistic Disorder and Their Impact on Quality of Life. Journal of Autism Developmental Disorder, v. 46, n.1, p. 328-331, 2016. doi: 10.1007/s10803-015-2577-4.
SAVIANI-ZEOTI, S.; PETEAN, E. B. L. A qualidade de vida de pessoas com deficiência mental leve. Psicologia: Teoria e Pesquisa, v. 24, n. 3, p. 305-311, 2008. doi: 10.1590/S0102-37722008000300006.
TEN HOOPEN, L. W. et. al. Children with an Autism Spectrum Disorder and Their Caregivers: Capturing Health‑Related and Care‑Related Quality of Life. Journal of Autism and Developmental Disorders, v. 50, p. 263–277, 2020. doi: 10.1007/s10803-019-04249-w.
The WHOQOL Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine, v. 28, n. 3, p. 551‐558, 1998. doi: 10.1017/s0033291798006667.
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WERLING, D. M.; GESCHWIND, D. H. Sex differences in autism spectrum disorders. Current Opinion in Neurology, v. 26, n. 2, p. 146-153, 2013. doi: 10.1097/WCO.0b013e32835ee548.
BARON-COHEN, S. et al. Prevalence of autism-spectrum conditions: UK school-based population study. British Journal Psychiatry, v. 194, n. 6, p. 500-509, 2009. doi: 10.1192/bjp.bp.108.059345.
BARROS, A. L. O. et al. Quality of life and burden of caregivers of children and adolescents with disabilities. Special Care Dentistry Association and Wiley Periodicals, v. 39, p. 380-388, 2019. doi: 10.1111/scd.12400.
BEKTAS, I. et al. Symptom frequency in children with congenital heart disease and parental care burden in predicting the quality of life of parents in Turkey. doi: 10.1016/j.pedn.2020.04.012.
BONIS, S. Stress and Parents of Children with Autism: A Review of Literature. Issues of Mental Health Nursing, v. 37, n. 3, p. 153-163, 2016. doi: 10.3109/01612840.2015.1116030.
CHIAO, C. Y.; WU, H. S.; HSIAO, C. Y. Caregiver burden for informal caregivers of patients with dementia: A systematic review. International Nursing Review, v. 62, n. 3, p. 340–350, 2015. doi: 10.1111/inr.12194.
FÁVERO, M. A. B.; DOS SANTOS, M. A. Autismo infantil e estresse familiar: uma revisão sistemática da literatura. Psicologia: Reflexão e Crítica, v. 18, n. 3, p. 358-369, 2005. doi: 10.4013/ctc.2012.52.07.
GENG, H. M. et al. Prevalence and determinants of depression in caregivers of câncer patients: A systematic review and meta-analysis. Medicine, Baltimore, v. 97, n. 39, p. 11863, 2018. doi: 10.1097/MD.0000000000011863.
HOEFMAN, R.; et al. Autism Spectrum Disorder and Parents’ Quality of Life: Application of the CarerQol. Journal of Autism and Development Disorders, v. 44, n. 8, p. 1933-1945, 2014. doi: 10.1007/s10803-014-2066-1.
IBGE - INSTITUTO BRASILEIRO DE GEOGRAFIA E ESTATÍSTICA. Características gerais dos domicílios e dos moradores : 2012-2019. Pesquisa Nacional por Amostra de Domicílios (PNAD) Contínua, 2019. Disponível em: <https://educa.ibge.gov.br/jovens/conheca-o-brasil/populacao/18319-cor-ou-raca.html>. Acesso em: 21 jun. 2020.
KOEGEL, R. L. et al. Consistent stress profiles in mothers of children with autism. Jornal of Autism Developmental Disorder, v. 22, n. 2, p. 205-216, 1992. doi: 10.1007/BF01058151.
KOPP, S.; BECKUNG, E.; GILLBERG, C. Developmental coordination disorder and other motor control problems in girls with autism spectrum disorder and/or attention-deficit/hyperactivity disorder. Research Developmental Disability, v. 31, n.2, p.350-361, 2010. DOI: 10.1017/s1355617707070270.
KOTHARI, R. et al. Gender differences in the relationship between social communication and emotion recognition. Journal of the American Academy of Child and Adolescent Psychiatry, v. 52, n. 11, p. 1148-1157, 2013. doi: 10.1016/j.jaac.2013.08.006.
MAENNER, M. J. et. al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016. MMWR Surveillance Summaries, v. 69, n. 4, p. 1–12, 2020. doi: 10.15585/mmwr.ss6706a1.
MAHENDIRAN, T. et al. Sex Differences in Social Adaptive Function in Autism Spectrum Disorder and Attention-Deficit Hyperactivity Disorder. Frontiers in Psychiatry, v. 10, n. 607, 2019. doi: 10.3389/fpsyt.2019.00607.
MARSACK, C. N.; SAMUEL, P. S. Mediating Effects of Social Support on Quality of Life for Parents of Adults with Autism. Journal of Autism and Developmental Disorders, v. 47, p. 2378–2389, 2017. doi: 10.1007/s10803-017-3157-6.
MARSACK-TOPOLEWSKI, C. N.; CHURCH, H. L. Impact of Caregiver Burden on Quality of Life for Parents of Adult Children With Autism Spectrum Disorder. American journal on intellectual and developmental disabilities, v. 124, n. 2, 145–156, 2019. doi: 10.1352/1944-7558-124.2.145.
MIELE, F. G.; AMATTO, C. A. H. Transtorno do espectro autista: qualidade de vida e estresse em cuidadores e/ou familiares - revisão de literatura. Cadernos de Pós-Graduação em Distúrbios do Desenvolvimento, v. 16, n. 2, p. 89-102, 2016. doi: 10.5935/1809-4139.20160010.
MISQUIATTI, A. R. N. et al. Sobrecarga familiar e crianças com transtornos do espectro do autismo: perspectiva dos cuidadores. Revista CEFAC, v. 17, n. 1, p. 192-200, 2015. doi: 10.1590/1982-0216201520413.
ØIEN, R.; EISEMANN, M. R. Brief Report: Parent-Reported Problems Related to Communication, Behavior and Interests in Children with Autistic Disorder and Their Impact on Quality of Life. Journal of Autism Developmental Disorder, v. 46, n.1, p. 328-331, 2016. doi: 10.1007/s10803-015-2577-4.
SAVIANI-ZEOTI, S.; PETEAN, E. B. L. A qualidade de vida de pessoas com deficiência mental leve. Psicologia: Teoria e Pesquisa, v. 24, n. 3, p. 305-311, 2008. doi: 10.1590/S0102-37722008000300006.
TEN HOOPEN, L. W. et. al. Children with an Autism Spectrum Disorder and Their Caregivers: Capturing Health‑Related and Care‑Related Quality of Life. Journal of Autism and Developmental Disorders, v. 50, p. 263–277, 2020. doi: 10.1007/s10803-019-04249-w.
The WHOQOL Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine, v. 28, n. 3, p. 551‐558, 1998. doi: 10.1017/s0033291798006667.
VELHOTE, A. B.; BOHOMOL, E.; VELHOTE, M. C. P. Reações do acompanhante diante dos procedimentos pré-operatórios em cirurgia pediátrica ambulatorial. Einstein, São Paulo, v. 14, n. 3, p. 403-407, 2016. doi: 10.1590/S1679-45082016AO3624.
WERLING, D. M.; GESCHWIND, D. H. Sex differences in autism spectrum disorders. Current Opinion in Neurology, v. 26, n. 2, p. 146-153, 2013. doi: 10.1097/WCO.0b013e32835ee548.
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2020-12-02
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