Support network for families of children with autism spectrum disorder
Abstract
Objective: to identify the social support network for families of children with Autism Spectrum Disorder (ASD). Methods:descriptive study with a qualitative approach, with the participation of 22 family members of children with ASD.Data collection was conducted through semi-structured interviews between August 2018 and March 2020.Statements were transcribed and submitted to content analysis, with the support of the WebQDA® software. Results:The following categories and subcategories emerged: family support (elements of family network, restricted network, and network functions) and community support (services used, material support and services, community resources, cognitive guide and advice). Final Considerations: the family support network is restricted and weakened due to limited support from the extended family or other community members.In addition, barriers were identified in the access to health services and social assistance resources ensured by law for people with ASD, revealing the importance of the role of multidisciplinary teams in connecting the care network, with a view to strengthening the families, becoming agents forthe protection of rights and expansion of the network for the child with ASD and their family.
Downloads
References
Maenner MJ, Shaw KA, Eds JB, Washington A, Patrick M, DiRienzo M, et al. Prevalence of autism spectrum disorder among children aged 8 years: autism and developmental disabilities monitoring network, 11 Sites, United States, 2016. MMWR SurveillSumm. 2020;69(4):1-12. DOI: https://doi.org/10.15585/mmwr.ss6904a1
DSM-5. Transtornos Depressivos - DSM - 5. Porto Alegre, 2014.
Sluzki CE. A rede social na prática sistêmica: alternativas terapêuticas. São Paulo: Casa do Psicólogo; 1997.
Correa B, Simas F, Portes JRM. Socialization goals and action strategies of mothers of children with suspected autism spectrum disorder. RevBrasEduc Espec. 2018; 24(2):293-308. DOI: http://dx.doi.org/10.1590/S1413-65382418000200010
Jorge RPC, Paula FM, Silveiro GB, Melo LA, Felício PVP, Braga T. Diagnosis of childhood autism and its repercussions on family and educational relationships. Rev BJHR. 2019; 2(6):5065-77. DOI: https://doi.org/10.34119/bjhrv2n6-015
Silva SED, Santos AL, Sousa YM, Cunha NMF, Costa JL, Araújo JS. The family inserted in the growth and development of the autistic child. J Health Biol Sci. 2018; 6(3):334-41. DOI: http://dx.doi.org/10.12662/2317-3076jhbs.v6i2.1782.p334-341.2018
Machado MS, Londero AD, Pereira CRR. Becoming the family of a child with Autistic Spectrum Disorder. ContextosClín. 2018; 11(3):335-50. DOI: http://dx.doi.org/10.4013/ctc.2018.113.05
Sharabi A, Marom-Golan D. Social Support, Education Levels, and Parents’ Involvement: A Comparison Between Mothers and Fathers of Young Children With Autism Spectrum Disorder. Topics Early Child Spec Educ. 2018;38(1):54–64. DOI: https://doi.org/10.1177/0271121418762511
Mapelli LD, Barbieri MC, Castro GVDZB, Bonelli MA, Wernet M, Dupas G. Child with autistic spectrum disorder: care from the family. Esc Anna Nery. 2018; 22(4):e20180116. DOI: https://doi.org/10.1590/2177-9465-EAN-2018-0116
Lemos ELMD, Salomão NMR.Jovens com transtorno autista, suas mães e irmãos: vivências familiares e Modelo Bioecológico.Psic. Teor. e Pesq. 2022;38:Pe38312. DOI: https://doi.org/10.1590/0102.3772e38312.pt
Maia FA, Almeida MTC, Alves MR, Bandeira LVS, Silva VBD, Nunes NF et al. Autism spectrum disorder and parents’ age: a case-control study in Brazil. Cad SaúdePública. 2018; 34(8):e00109917. DOI: https://doi.org/10.1590/0102-311X00109917
Santos GS, Pieszak GM, Gomes GC, Biazus CB, Oliveira Silva S. Contributions of Better Childhood for Growth and child development in family perception.RevPesquiFumdamCuid Online. 2019; 11(1):67-73. DOI: https://doi.org/10.9789/2175-5361.2019.v11i1.67-73
Sousa FN, Costa AP, Moreira A. webQDA [programa de computador] Versão 3.0. Aveiro: Microio/Ludomedia [Internet]. 2019 [acesso em 22 de feveiro de 2023]. Disponível em: https://www.webqda.net/o-webqda/
Bardin L. Análise de conteúdo. Lisboa: Edições 70; 2016.
Leoni PHT,Jabali MBFC, Rodrigues AA. Adaptação familiar ao diagnóstico de Transtorno do Espectro Autista: uma compreensão da vivência de famílias. Rev Bras InterdiscipSaúde. 2020;1(2):21-40. DOI: https://doi.org/10.56344/2675-4827.v1n2a20202
Papadopoulos D. Mothers’ Experiences and Challenges Raising a Child with Autism Spectrum Disorder: A Qualitative Study. Brain Sci. 2021;11:309. DOI: https://doi.org/10.3390/brainsci11030309
Weissheimer G, Mazza VA, Freitas CASL, Silva SR. Informational support for families of children with autism spectrum disorder. Rev Gaúcha Enferm. 2021;42:e20200076. DOI: https://doi.org/10.1590/1983-1447.2021.20200076
Souza MHN, Nóbrega VM, N Collet. Social network of children with cronic disease: Rev Bras Enferm. 2020;73(2):e20180371. DOI: http://dx.doi.org/10.1590/0034-7167-2018-0371
Cabral IE, Motta IS, Pimentel TGP, Corrêa MPO, Arrué AM, Neves ET. Demands of children with special health care needs in primary Care in Rio de Janeiro. Ciênc. cuid. saúde. 2020;19:e50479. DOI: https://doi.org/10.4025/ciencuidsaude.v19i0.50479
Lei n. 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. [Internet] 2012 [acesso em 22 de fevereiro de 2023]. Disponível em:https://www.planalto.gov.br/ccivil_03/_ato2011-2014/2012/lei/l12764.htm
Balisa BDC, Mota LML, Cotrim LVP, Luna CFC, GalliL CP, Serique DAC, et al. Transtorno do espectro autista: a percepção do cuidador acerca das dificuldades encontradas no acesso aos serviços de saúde. REAS. 2022;15(9):e10857. DOI: https://doi.org/10.25248/reas.e10857.2022
Ministério da Saúde (BR). Secretaria de Atenção à Saúde. Departamento de Ações Programáticas Estratégicas. Diretrizes de Atenção à Reabilitação da Pessoa com Transtornos do Espectro do Autismo (TEA). Brasília: Ministério da Saúde. [Internet] 2014 [acesso em 22 de fevereiro de 2023]. 86 p. Disponível em: https://bvsms.saude.gov.br/bvs/publicacoes/diretrizes_atencao_reabilitacao_pessoa_autismo.pdf
Weissheimer G, Mazza VA, Santana JM, Ruthes VBTNM, Freitas CASL. Information demands from families of children with Autism Spectrum Disorder. Rev Bra de Enferm. 2021;74(5): e20200642. DOI: https://doi.org/10.1590/0034-7167-2020-0642
Valderrama A, Courcy I, Weis-Heitner L, Forgeotd’Arc B. Health literacy issues of parents seeking information on autism spectrum disorder around time of diagnosis. SanteMent Que.2020; 45(1):127-45. DOI: https://doi.org/10.7202/1070244ar
Copyright (c) 2023 Ciência, Cuidado e Saúde
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
