Repercussion of the implementation of the Picture Exchange Communication System - PECS in the overload index of mothers of children with Autism Spectrum Disorder
Repercussão da implementação do Picture Exchange Communication System – PECS no índice de sobrecarga de mães de crianças com Transtorno do Espectro do Autismo
Carine Ferreira; Sheila Cavalcante Caetano; Jacy Perissinoto; Ana Carina Tamanaha
Abstract
Purpose: The aim of this study was to analyze the repercussion of the implementation of PECS on the burden index of mothers of children with Autism Spectrum Disorder (ASD). Methods: This was a longitudinal study (CEP 0403/2017). The sample consisted of 20 mother and child with ASD. The mothers were on average 41 years and 5 months and the children were 7 years and 2 months old. Fifteen children were male and five were female. The brazilian version of the Burden Interview scale was applied to verify the level of caregiver burden. The Autism Behavior Checklist (ABC) was applied to the analysis of non-adaptive behaviors and to analyze the lexical repertoire: Auditory and Expressive Vocabulary Tests. The PECS Implementation Program was composed of 24 sessions of individual speech therapy with the active presence of mothers. At the end all children and mothers were reevaluated with part of the instruments. Results: There was a tendency to reduce maternal overload indexes after the implementation of the PECS. There was a significant decrease in non-adaptive behaviors and an increase in the expressive and auditory vocabulary indexes of the children at the final moment of the study. We did not observe a significant correlation between the degrees of overload with age, schooling and intellectual quotient of children, nor schooling and maternal socioeconomic status. Conclusion: It was possible to analyze the repercussion of the implementation of the PECS on the burden of mothers of children with ASD assisted by the Program.
Keywords
Resumo
Objetivo: O objetivo deste estudo foi analisar a repercussão da implementação do PECS no índice de sobrecarga de mães de crianças com Transtorno do Espectro do Autismo (TEA). Método: Trata-se de um estudo longitudinal (CEP 0403/2017). A amostra foi constituída por 20 díades mães-crianças com TEA. As mães tinham em média, 41 anos e 5 meses e as crianças, 7 anos e 2 meses. Quinze crianças eram do gênero masculino e cinco, do feminino. Foi aplicada a versão brasileira da escala Burden Interview cujo objetivo é a verificação do nível de sobrecarga dos cuidadores. Para análise dos comportamentos não-adaptativos aplicou-se o Autism Behavior Checklist (ABC) e para análise do repertório lexical: os Testes de Vocabulário Auditivo e Expressivo. O Programa de Implementação do PECS foi composto por 24 sessões de terapia fonoaudiológica individual com a presença ativa das mães. Ao final do Programa todas as crianças e suas respectivas mães foram reavaliadas com parte dos instrumentos utilizados na fase inicial do estudo. Resultados: Houve tendência de redução dos índices de sobrecarga materna após a implementação do PECS. Notamos diminuição significativa dos comportamentos não-adaptativos e aumento dos índices de vocabulário expressivo e auditivo das crianças no momento final do estudo. Não observamos correlação significativa entre os índices de sobrecarga com a idade, escolaridade e quociente intelectual das crianças; nem com a escolaridade e nível socioeconômico materno. Conclusão: Foi possível analisar a repercussão da implementação do PECS na sobrecarga de mães de crianças com TEA assistidas pelo Programa.
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Referências
1. Misquiatti ARN, Brito MC, Ferreira FTS, Assumpção FB Jr. Sobrecarga familiar e crianças com Transtornos do Espectro do Autismo: perspectiva dos cuidadores. Rev CEFAC. 2015;17(1):192-200. http://dx.doi.org/10.1590/1982- 0216201520413.
2. APA: American Psychiatric Association. Manual Diagnóstico e Estatistico de Transtornos Mentais – DSM 5. Porto Alegre: Artmed; 2014.
3. Klin A, Jones W. An agenda for 21st century neurodevelopmental medicine: lessons from Autism. Rev Neurol. 2018;66(S01):S3-15. http://dx.doi. org/10.33588/rn.66S01.2018039.
4. Hong J, Bishop-Fitzpatrick L, Smith LE, Greenberg JS, Mailick MR. Factors associated with subjective quality of life of adults with autism spectrum disorder: self-report versus maternal reports. J Autism Dev Disord. 2016;46(4):1368-78. http://dx.doi.org/10.1007/s10803-015-2678-0. PMid:26707626.
5. Jones S, Bremer E, Lloyd M. Autism spectrum disorder: family quality of life while waiting for intervention services. Qual Life Res. 2017;26(2):331- 42. http://dx.doi.org/10.1007/s11136-016-1382-7. PMid:27485916.
6. Reed P, Sejunaite K, Osborne LA. Relating between self-reported health and stress in mother of children with Autism Spectrum Disorder. J Autism Dev Disord. 2016;46(3):934-41. http://dx.doi.org/10.1007/s10803-015- 2638-8. PMid:26527109.
7. Bondy A, Frost L. Manual de treinamento do sistema de comunicação por troca de figuras. Newark: Pyramid, 2009.
8. Ferreira C, Bevilacqua M, Ishihara M, Fiori A, Armonia A, Perissinoto J, et al. Selection of words for implementation of the Picture Exchange Communication System - PECS in non-verbal autistic children. CoDAS. 2017;29(1):e20150285. http://dx.doi.org/10.1590/2317-1782/20172015285. PMid:28300954.
9. Doherty A, Bracken M, Gormley L. Teaching children with autism to initiate and respond to peer mands using Picture Exchange Communication System. Behav Anal Pract. 2018;11(4):279-88. http://dx.doi.org/10.1007/ s40617-018-00311-8. PMid:30538902.
10. Landa R, Hanley GP. An evaluation of multiple-schedule variations to reduce high-rate requests in the picture exchange communication system. J Appl Behav Anal. 2016;49(2):388-93. http://dx.doi.org/10.1002/jaba.285. PMid:26814152.
11. Agius MM, Vance M. A comparison of PECS and Ipad to teach requesting to preschollers with autistic spectrum disorders. Augment Altern Commun. 2016;32(1):58-68. http://dx.doi.org/10.3109/07434618.2015.1108363. PMid:26586580.
12. Thiemann-Bourque K, Brady N, McGuff S, Stump K, Naylor A. Picture Exchange Communication System and Pals: a peer-mediated augmentative and alternative communication intervention for minimally verbal preschoolers with autism. J Speech Lang Hear Res. 2016;59(5):1133-45. http://dx.doi. org/10.1044/2016_JSLHR-L-15-0313. PMid:27679841.
13. ABEP: Associação Brasileira de Empresas de Pesquisa. Critério de Classificação Econômica Brasil. São Paulo: ABEP; 2018. 6 p.
14. Marteleto MRF, Pedromônico MR. Validity of Autism Behavior Checklist (ABC): preliminary study. Rev Bras Psiquiatr. 2005;27(4):295-301. http:// dx.doi.org/10.1590/S1516-44462005000400008. PMid:16358111.
15. Weschler D. WISC III Escala de inteligência para crianças. São Paulo: Casa Psicólogo; 2002.
16. Scazufca M. Versão brasileira da escala Burden Interview para avaliação da sobrecarga do cuidado em cuidadores de pessoas com doenças mentais. Rev Bras Psiquiatr. 2002;24(1):12-6. http://dx.doi.org/10.1590/S1516- 44462002000100006.
17. Capovilla FC, Negrão VB, Damazio M. Teste de Vocabulário Auditivo e Teste de Vocabulário Expressivo. São Paulo: Memnon; 2011.
18. Siah PC, Tan SH. Relationships between sense of coherence, coping strategies and quality of life of parents of children with Autism in Malaysia: a study of chinese parents. Disabil CBR Incl Dev. 2016;27(1):78-91. http:// dx.doi.org/10.5463/dcid.v27i1.485.
19. Picardi A, Gigantesco A, Tarolla E, Stoppioni V, Cerbo R, Cremonte M, et al. Parental burden and its correlates in families of children with Autism Spectrum Disorder: a multicentre study with two comparison groups. Clin Pract Epidemiol Ment Health. 2018;14(1):143-76. http:// dx.doi.org/10.2174/1745017901814010143. PMid:30158998.
20. Bozkurt G, Uysal G, Düzkaya DS. Examination of care burden and stress coping styles of parents of children with Autism Spectrum Disorder. J Pediatr Nurs. 2019;47:142-7. http://dx.doi.org/10.1016/j.pedn.2019.05.005. PMid:31146248.
21. Ribeiro SH, Paula CS, Bordini D, Mari JJ, Caetano SC. Barriers to early identification of autism in Brazil. Rev Bras Psiquiatr. 2017;39(4):352-4. http://dx.doi.org/10.1590/1516-4446-2016-2141. PMid:28977067.
22. Moretto G, Ishihara MK, Ribeiro M, Caetano SC, Perissinoto J, Tamanaha AC. Interferência do meio comunicativo da criança com Transtorno do Espectro do Autismo na qualidade de vida de suas mães. CoDAS. 2020;32(6):e20190170. http://dx.doi.org/10.1590/2317-1782/20202019170. PMid:33331540.
23. Haney JL, Houser L, Cullen JA. Parental perceptions and child emotional and behavioral problems in Autism. J Autism Dev Disord. 2018;48(1):12- 27. http://dx.doi.org/10.1007/s10803-017-3288-9. PMid:28864836.
24. Siller M, Hotez E, Swanson M, Delavenne A, Hutman T, Sigman M. Parent coaching increases the parents´ capacity for reflection and self-evaluation: results from a clinical trial in autism. Attach Hum Dev. 2018;20(3):287-308. http://dx.doi.org/10.1080/14616734.2018.1446737. PMid:29513132.
25. Gilroy SP, Leader G, McCleery JP. A pilot community-based randomized comparison of speech generating devices and the PECS for children diagnosed with Autism Spectrum Disorder. Autism Res. 2018;11(12):1701-11. http:// dx.doi.org/10.1002/aur.2025. PMid:30475454.
26. Brignell A, Chenausky KV, Song H, Zhu J, Suo C, Morgan AT. Communication interventions for Autism Spectrum Disorder in minimally verbal children. Cochrane Database Syst Rev. 2018;2018(11):CD012324. http://dx.doi. org/10.1002/14651858.CD012324.pub2. PMid:30395694.
27. Jurgens A, Anderson A, Moore DW. Maintenance and generalization of skills acquired through picture exchange communication system (PECS) training: a long-term follow-up. Dev Neurorehabil. 2019;22(5):338-47. http://dx.doi.org/10.1080/17518423.2018.1503619. PMid:30067415.
28. Alnazly EK, Abojedi A. Psychological distress and perceived burden in caregivers of persons with Autism Spectrum Disorder. Perspect Psychiatr Care. 2019;55(3):501-8. http://dx.doi.org/10.1111/ppc.12356. PMid:30729536.
29. Barros ALO, Gutierrez GM, Barros AO, Santos MTBR. Quality of life and burden of caregivers of children and adolescents with disabilities. Spec Care Dentist. 2019;39(4):380-8. http://dx.doi.org/10.1111/scd.12400. PMid:31172548.
30. Singh P, Ghosh S, Nandi S. Subjective Burden and Depression in mothers of children with Autism Spectrum Disorder in India: moderating effects of social support. J Autism Dev Disord. 2017;47(10):3097-111. http://dx.doi. org/10.1007/s10803-017-3233-y. PMid:28695439.
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