Association Between the Level of Support for Children with ASD and the Caregiver's Quality of Life
DOI:
https://doi.org/10.36489/saudecoletiva.2025v16i101p17376-17389Keywords:
Autism Spectrum Disorder, Quality of Life, Caregivers, Mental Health, Health ServicesAbstract
Objective: To analyze the association between the level of support needed by children with Autism Spectrum Disorder (ASD) and the quality of life of their caregivers. Method: Quantitative, cross-sectional, and analytical study conducted with 102 caregivers of children with ASD treated in a city in Sergipe, Brazil. Sociodemographic questionnaires and the WHOQOL-Bref were administered. Data were subjected to the Kruskal-Wallis, Mann-Whitney U, and Spearman correlation tests, adopting p<0.05 as statistical significance. Results: The sample was composed mostly of women (95.1%), without a partner (52.9%), and with a mean age between 31 and 40 years. The children were predominantly male (72.5%), diagnosed mainly with childhood autism (89.2%). A significant negative correlation was observed between the level of support required by the child and the physical, social, and environmental domains, as well as the caregiver's health satisfaction, demonstrating that greater support demands significantly compromise quality of life. Conclusion: The increased need for support in children with ASD is associated with a worsening quality of life for the caregiver. The findings highlight the importance of intersectoral strategies and the role of nursing in developing support actions that minimize burden and promote the well-being of these individuals.
References
American Psychiatric Association. Manual Diagnóstico e Estatístico de Transtornos Mentais: DSM-5. 5. ed. Porto Alegre: Artmed, 2014.
Pratesi CB, et al. Quality of Life in Caregivers of Children and Adolescents with Autistic Spectrum Disorder. Brain Sci. 2021;11(7):924. https://doi.org/10.3390/brainsci11070924. DOI: https://doi.org/10.3390/brainsci11070924
Gomes MFL, Furtado E. Qualidade de vida em cuidadores de crianças e adolescentes com TEA. Rev. Bras. Qual. Vida. 2020;12(2):e3125. https://doi.org/10.3895/rbqv.v12n2.3125.
Silva JRS, et al. Preliminary Assessment of the Quality of Life and Daily Burden of Caregivers of Children with ASD. Int. J. Environ. Res. Public Health. 2023;20(2):2012. https://doi.org/10.3390/ijerph2002012 . DOI: https://doi.org/10.3390/ijerph20032012
Bar S, et al. Quality of Life Among Caregivers of Children with ASD and ADHD: A Cross-Sectional Study. J. Autism Dev. Disord. 2023;54:4208–4215. https://doi.org/10.1007/s10803-023-06129-W. DOI: https://doi.org/10.1007/s10803-023-06129-w
.Levenson D. Autism in siblings often caused by different faulty genes, study says. Am J Med Genet A. 2015;167(5):ix–ix. https://doi.org/10.1002/ajmg.a.37112 DOI: https://doi.org/10.1002/ajmg.a.37112
Instituto Brasileiro de Geografia e Estatística (IBGE). Censo demográfico 2010: resultados gerais da amostra [Internet]. Rio de Janeiro: IBGE; 2012 [citado 2025 set 27]. Disponível em: https://censo2010.ibge.gov.br/
BARBETTA, P. A. Estatística aplicada às ciências sociais. Editora da UFSC, p. 340, 2002.
Organização Mundial de Saúde: Divisão de Saúde Mental, Grupo WHOQOL, versão em português dos instrumentos de avaliação de qualidade de vida (WHOQOL) 1998. Procedimentos de aplicação do WHOQOL-100 e do WHOQOL-Bref [internet] 1998 Set [citado 2009 Out 22]. Disponível em:http://www.ufrgs.br/Psiq/whoqol4.html.
JASP Team. JASP (Version 15.0) [Computer software]. Amsterdam: JASP Team; 2024.
COSTA, M. T. et al. Percepção de suporte social em mães de crianças com transtorno do espectro autista. Cadernos Brasileiros de Terapia Ocupacional, São Carlos, v. 30, p. e3373, 2022. DOI: https://doi.org/10.1590/2526-8910.ctoao23033038
MAENNER, M. et al. Prevalence and characteristics of autism spectrum disorder among children aged 8 years — autism and developmental disabilities monitoring network, 11 sites, united states, 2018. https://doi.org/10.15585/mmwr.ss7011a1 DOI: https://doi.org/10.15585/mmwr.ss7011a1
Rodrigues F, Leontino E. O IMPACTO NAS RELAÇÕES FAMILIARES APÓS O DIAGNÓSTICO DE TEA:: UMA REVISÃO DA LITERATURA. Cad. Bras. Saúde Ment. [Internet]. 12º de maio de 2025 [citado 30º de setembro de 2025];17(51):89-106. Disponível em: https://periodicos.ufsc.br/index.php/cbsm/article/view/98045
Silva GB, Pansera AC. Sobrecarga, ansiedade e depressão em cuidadores de crianças no transtorno do espectro autista: um estudo de correlação. Saúde Desenvolv Hum. 2023;11(2):e9670. Disponível em: https://svr-net127.unilasalle.edu.br/index.php/saude_desenvolvimento/article/view/9670 DOI: https://doi.org/10.18316/sdh.v11i3.9670
Opoku MP, Nketsia W, Banye MA, Mprah WK, Dogbe JA, Badu E. Caregiving experiences and expectations of parents with in-school children with intellectual disability in Ghana. Res Dev Disabil. 2019;89:103524. https://doi.org/10.1016/j.ridd.2019.103524 DOI: https://doi.org/10.1016/j.ridd.2019.103524
Ran J, Tu P, Wu X, Zhang Y, Li H, Su J, Xiang Y. Formal social support and quality of life of caregivers with autistic children: A large-scale nationwide survey in China. Disabil Health J. 2023;16(2):101452. https://doi.org/10.1016/j.dhjo.2022.101452 . DOI: https://doi.org/10.2139/ssrn.4332216
Riccioppo MRPL. Experiências de familiares cuidadores de crianças com transtorno do espectro autista e apoio social: subsídios para o cuidado [tese de doutorado]. São Paulo: Universidade de São Paulo; 2023. Disponível em: https://doi.org/10.11606/T.22.2023.tde-11032024-093212 DOI: https://doi.org/10.11606/T.22.2023.tde-11032024-093212
