Keywords
autism spectrum disorder
caregivers
How to Cite
Abstract
The present study aimed to evaluate the factors associated with the quality of life of caregivers of children with autism spectrum disorder. An integrative literature review was conducted, and articles retrieved from the secondary databases Virtual Health Library, Latin American and Caribbean Literature in Health Sciences, Scientific Electronic Library Online, and Online System for Searching and Analyzing Medical Literature were analyzed using the descriptors quality of life, autism spectrum disorder, and caregivers. The results indicate that the factor with the greatest negative impact on quality of life is not the diagnosis itself, but the presence of disruptive behaviors and sleep disorders in the child, which cause physical exhaustion and social isolation for the caregiver; support from a partner and community networks proved to be the main protective factor, caregivers with a robust support network show higher resilience scores, lower incidence of anxiety and depression symptoms, and better quality of life, while exclusive dedication and the abandonment of personal and professional projects to meet the child’s therapeutic needs result in a sharp decline in quality of life in the environmental and financial domains. It is emphasized that care planning should include the caregiver as a subject of care, ensuring support so that the exercise of parenting does not lead to the exclusion of their own subjectivity.
References
ACTAN, O.; ORAKCI, Ş.; DURNALI, M. Investigation of the relationship between burnout, life satisfaction and quality of life in parents of children with disabilities. European Journal of Special Needs Education, v. 35, n. 5, p. 679-695, 2020.
AL- FARSI, O. A.; AL-FARSI, Y. M.; AL-SHARBATI, M. M.; AL-ADAWI, S. Stress, anxiety, and depression among parents of children with autism spectrum disorder in Oman: a case-control study. Neuropsychiatric Disease and Treatment, v. 12, p. 1943-1951, 2016.
ALHAZMI, A.; PETERSEN, R.; DONALD, K. A. Quality of life among parents of South African children with autism spectrum disorder. Acta Neuropsychiatrica, v. 30, n. 4, p. 226-231, 2018.
AMERICAN PSYCHIATRIC ASSOCIATION. Manual diagnóstico e estatístico de transtornos mentais: DSM-5. 5. ed. Porto Alegre: Artmed, 2014.
AKTAN, O.; ORAKCI, Ş.; DURNALI, M. Investigation of the relationship between burnout, life satisfaction and quality of life in parents of children with disabilities. European Journal of Special Needs Education, v. 35, n. 5, p. 679-695, 2020.
BRODY, T. R.; STOYLES, G. J.; MORSE, C. B. Understanding carers' lived experience of stigma: the voice of families with a child on the autism spectrum. Health & Social Care in the Community, v. 25, n. 1, p. 224-233, 2017.
CASTRO, G. G.; VIEIRA, A. L. S.; SANTOS, N. M. F. Fatores associados a qualidade de vida de mães de pacientes com transtorno do espectro autista. O Mundo da Saúde, v. 46, n. 1, p. 1-10, 2022.
CENTER FOR DISEASE CONTROL AND PREVENTION. Prevalence of autism spectrum disorder among children aged 8 years: autism and developmental disabilities monitoring network, 11 sites, United States, 2010. MMWR Surveillance Summaries, v. 63, n. 2, p. 1-21, 2014.
CIDAV, Z.; MARCUS, S. C.; MANDELL, D. S. Implications of childhood autism for parental employment and earnings. Pediatrics, v. 129, n. 4, p. 617-623, 2012.
DAVIS, J. M.; FINKE, E.; HICKERSON, B. Service delivery experiences and intervention needs of military families with children with ASD. Journal of Autism and Developmental Disorders, v. 46, n. 5, p. 1748-1761, 2016.
DERGUY, C.; MELLOIS-BROCHARD, C.; BEAUDOIN, M.; ROUSSEAU, T.; BOUVARD, M. The need for an ecological approach to parental stress in autism spectrum disorders: the combined role of individual and environmental factors. Journal of Autism and Developmental Disorders, v. 46, n. 6, p. 1895-1905, 2016.
DYCHES, T. T.; CHRISTENSEN, R.; HARPER, J. M.; MANDLECO, B.; ROPER, S. O. Respite care for single mothers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, v. 46, n. 3, p. 812-824, 2016.
ERCOLE, F. F.; MELO, L. S.; ALCOFORADO, C. L. G. C. Revisão integrativa versus revisão sistemática. Revista Mineira de Enfermagem, v. 18, n. 1, p. 1-11, 2014.
ESTER, A.; GREEN, S. A.; CAPLAN, R.; BAKER, B. L.; BLACHER, J. Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, v. 13, n. 4, p. 375-387, 2009.
FLECK, M. P. A.; LOUZADA, S.; XAVIER, M.; CHACHAMOVICH, E.; VIEIRA, G.; SANTOS, L. et al. Aplicação da versão em português do instrumento abreviado de avaliação da qualidade de vida “WHOQOL-bref”. Revista de Saúde Pública, v. 34, n. 2, p. 178-183, 2000.
GOMES, P. T. M.; LIMA, L. H. L.; BUENO, M. K. G.; ARAÚJO, L. A.; SOUZA, N. M. Autismo no Brasil, desafios familiares e estratégias de superação: revisão sistemática. Jornal de Pediatria, v. 92, n. 2, p. 111-121, 2015.
JI, B.; ZHAO, I.; TURNER, C.; SUN, M.; YI, R.; TANG, S. Predictors of health-related quality of life in Chinese caregivers of children with autism spectrum disorders: a cross-sectional study. Archives of Psychiatric Nursing, v. 28, n. 5, p. 327-332, 2014.
KHANNA, R.; MADHAVAN, S. S.; SMITH, M. J.; PATRICK, J. H.; TWOREK, C.; BECKER-COTTRILL, B. Assessment of health-related quality of life among primary caregivers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, v. 41, n. 9, p. 1214-1227, 2011.
MATHEW, N. E.; BURTON, K. L. O.; SCHIERBEEK, A.; CRNCEC, R.; WALTER, A.; EAPEN, V. Parenting preschoolers with autism: socioeconomic influences on wellbeing and sense of competence. World Journal of Psychiatry, v. 9, n. 2, p. 30-46, 2019.
MONTES, G.; HALTERMAN, J. S. Association of childhood autism spectrum disorders and loss of family income. Pediatrics, v. 121, n. 4, p. 821-826, 2008.
MOXOTO, G. F. A.; MAGRIS, L. E. N. Avaliação de treino de controle do stress para mães de crianças com transtornos do espectro autista. Psicologia: Reflexão e Crítica, v. 28, n. 4, p. 772-779, 2015.
OLIVEIRA, C. Um retrato do autismo no Brasil. Espaço Aberto, 2017. Disponível em: http://www.usp.br/espacoaberto/?materia=um-retrato-do-autismo-no-brasil. Acesso em: 10 nov. 2025.
PIOVESAN, J.; SCARTEGAGNA, S. A.; MARCHI, A. C. B. Quality of life and depressive symptomatology in mothers of individuals with autism. Psico-USF, v. 20, n. 3, p. 505-515, 2015.
SOUZA, M. T.; SILVA, M. D.; CARVALHO, R. C. Revisão integrativa: o que é e como fazer. Einstein, v. 8, n. 1, p. 102-108, 2010.
URSI, E. S. Prevenção de lesões de pele no perioperatório: revisão integrativa da literatura. 2005. 130 f. Dissertação (Mestrado em Enfermagem) – Escola de Enfermagem, Universidade de São Paulo, Ribeirão Preto, 2005.
VALICENTI-MCDERMOTT, M.; LAWSON, K.; HOTTINGER, K.; SEIJO, R.; SCHECHTMAN, M.; SHULMAN, L. et al. Parental stress in families of children with autism and other developmental disabilities. Journal of Child Neurology, v. 30, n. 13, p. 1728-1735, 2015.