The impacts of the care of atypical people on the family approach
DOI:
https://doi.org/10.55892/jrg.v9i20.3368Keywords:
Autism Spectrum Disorder, Caregivers, FamilyAbstract
Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder associated with a strong genetic component, with early manifestations such as impaired social communication and repetitive sensory-motor behaviors. The main challenges for caregivers include social stigma, prejudice, and the physical and emotional burden resulting from continuous care. This study aimed to analyze the challenges faced by caregivers of children with ASD and investigate the strategies adopted by these caregivers to cope with daily demands and promote the well-being of the neurodivergent person and their family. This is a mixed-methods research study, integrating quantitative and qualitative methods, of a descriptive and exploratory nature, with a cross-sectional design. Data collection was carried out through a semi-structured questionnaire applied digitally to 60 Brazilian caregivers over 18 years old who played the role of primary or secondary caregivers of people diagnosed with ASD. The results revealed a predominantly female (93.3%) and maternal (76.7%) profile, with high levels of stress (75% reported moderate to intense stress), anxiety, and compromised sleep quality (76.7% with regular or poor sleep). It was observed that 71.7% of people with ASD were victims of prejudice and ableism, especially in the school environment. The assessment of social and institutional support was considered insufficient by 55% and 48.3% of participants, respectively. Despite good knowledge about legal rights (81.7%), only 53.3% reported having received support from public policies, and only 36.7% received the Continuous Cash Benefit (BPC). Coping strategies included active search for information, participation in training, exercise of patience, and engagement in support networks. The findings highlight the urgent need for more effective public policies, mental health support programs for caregivers, and actions to combat prejudice and promote inclusion, aiming to ensure the sustainability of care and the quality of life of families.
Downloads
References
AWUVIRY-NEWTON, K.; KUKAH, S. A.; ABEKAH-CARTER, K. Exploring the Unmet Needs of Primary Caregivers of Autistic Children and Its Implications for Social Work Practice in Ghana. Health & Social Care in the Community, v. 2024, n. 1, 1 jan. 2024.
BONFIM, T. DE A. et al. Family experiences in discovering Autism Spectrum Disorder: implications for family nursing. Revista Brasileira de Enfermagem, v. 73, n. suppl 6, 2020.
BRASIL. Lei nº 12.764, de 27 de dezembro de 2012. Institui a Política Nacional de Proteção dos Direitos da Pessoa com Transtorno do Espectro Autista. Diário Oficial da União: Brasília, DF, 28 dez. 2012.
BREWER, N.; YOUNG, R. L.; LUCAS, C. A. Autism Screening in Early Childhood: Discriminating Autism From Other Developmental Concerns. Frontiers in Neurology, v. 11, 10 dez. 2020.
CATALANO, D.; HOLLOWAY, L.; MPOFU, E. Mental Health Interventions for Parent Carers of Children with Autistic Spectrum Disorder: Practice Guidelines from a Critical Interpretive Synthesis (CIS) Systematic Review. International Journal of Environmental Research and Public Health, v. 15, n. 2, p. 341, 14 fev. 2018.
CHEN, K.-L. et al. Differences Between the Childhood Autism Rating Scale and the Social Responsiveness Scale in Assessing Symptoms of Children with Autistic Spectrum Disorder. Journal of Autism and Developmental Disorders, v. 48, n. 9, p. 3191–3198, 25 abr. 2018.
CORREA, B.; SIMAS, F.; PORTES, J. R. M. Metas de Socialização e Estratégias de Ação de Mães de Crianças com Suspeita de Transtorno do Espectro Autista. Revista Brasileira de Educação Especial, v. 24, n. 2, p. 293–308, abr. 2018.
DANTAS, K. O. et al. Repercussões do nascimento e do cuidado de crianças com deficiência múltipla na família: uma metassíntese qualitativa. Cadernos de Saúde Pública, v. 35, n. 6, 2019.
KAUR, M. Application of mixed method approach in public health research. Indian Journal of Community Medicine, v. 41, n. 2, p. 93, 2016.
KELLY, B. et al. The association between socioeconomic status and autism diagnosis in the United Kingdom for children aged 5–8 years of age: Findings from the Born in Bradford cohort. Autism, v. 23, n. 1, p. 131–140, 7 nov. 2017.
LORD, C. et al. Autism Spectrum Disorder. The Lancet, v. 392, n. 10146, p. 508–520, ago. 2018.
LOSAPIO, M. F.; FURTADO, E. F. Qualidade de vida em cuidadores de crianças e adolescentes com transtorno do espectro autista: estudo comparativo entre sexos. Cadernos de Pós-Graduação em Distúrbios do Desenvolvimento, v. 20, n. 2, 2020.
LI, F. et al. From child social impairment to parenting stress in mothers of children with ASD: The role of parental self-efficacy and social support. Frontiers in Psychiatry, v. 13, 6 set. 2022.
MAENNER, M. J. et al. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR. Surveillance Summaries, v. 72, n. 2, p. 1–14, 24 mar. 2023.
MONTEIRO, B. C. DA C. et al. The relationship between burden and caregiver’s sleep disturbances in dementia: a systematic review. Dementia & neuropsychologia, v. 17, p. e20230030, 2023.
PATEL, A. D. et al. Burden of care and quality of life in caregivers of children and adolescents with autism spectrum disorder. Asian Journal of Psychiatry, v. 70, p. 103030, abr. 2022.
PONTES, M. et al. Desafios para a inclusão de crianças com Transtorno do Espectro Autista no ensino regular. Revista Educação Especial, p. e29/1-16, 2025.
ROGERS, S. J. et al. A Multisite Randomized Controlled Two-Phase Trial of the Early Start Denver Model Compared to Treatment as Usual. Journal of the American Academy of Child & Adolescent Psychiatry, v. 58, n. 9, p. 853–865, set. 2019.
SILVA, E. P. DA et al. Burden and quality of life of caregivers of individuals with stroke in the Western Amazon. Revista Brasileira de Medicina do Trabalho, v. 23, n. 03, p. 01-10, 2025.
SILVA, M. P. et al. Perception of caregivers of preschool children with ASD on their behavior and occupational performance during the COVID-19 pandemic. Cadernos Brasileiros de Terapia Ocupacional, v. 32, 1 jan. 2024.
TAUSHANOVA, M. et al. Quality of life among caregivers of children with autism spectrum disorder: A systematic review and meta-analysis. Acta Biomedica Atenei Parmensis, Fidenza, Italy, v. 97, n. 1, p. 17719, 2026.
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, n. 1, p. 263–277, 17 out. 2019.
VALLE, P. R. D.; FERREIRA, J. D. L. Análise de conteúdo na perspectiva de bardin: contribuições e limitações para a pesquisa qualitativa em educação. Educação em Revista, v. 41, 2025.
