Participação em casa e fatores contextuais nas deficiências infantis: um estudo transversal durante a pandemia da COVID-19
DOI:
https://doi.org/10.11606/issn.2238-6149.v35i1-3e231252Palavras-chave:
Adolescentes, CIF, Crianças, Deficiência, ParticipaçãoResumo
A funcionalidade das crianças se manifesta em sua participação e é altamente influenciado por fatores pessoais (mediadores) e ambientais (barreiras ou facilitadores), dificultando ou facilitando, portanto, sua participação. A pandemia da COVID-19 apresenta uma circunstância única para explorar essas influências. Investigamos se (i) fatores da criança, (ii) ambiente familiar e (iii) frequência de participação em casa estão associados ao envolvimento na participação em casa de crianças com deficiências de desenvolvimento (DD) durante a pandemia da COVID-19. Estudo transversal-exploratório. Noventa pais de crianças com DD (7,00 ± 3,78 anos) responderam a um questionário padronizado e à seção domiciliar do PEM-CY. A regressão linear multivariada foi executada com o envolvimento como um resultado dependente. A frequência de participação em casa foi a primeira variável a entrar no modelo, representando 48,5% do envolvimento. A próxima variável a entrar no modelo foi o comprometimento motor da criança, representando 56,2% do envolvimento junto com a frequência. A última variável que entrou foram os cuidadores que não trabalhavam, representando juntos 58,7% do envolvimento. Uma maior frequência de participação em casa, crianças com deficiências motoras (em vez de deficiências intelectuais-comportamentais) e mães que não estão empregadas foram fortemente associadas a um maior envolvimento na participação em casa durante a pandemia de COVID-19
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Referências
World Health Organization. International classification of functioning, disability and health: ICF [Internet]. Geneva: World Health Organization; 2001 [cited 2024 Nov 14]. Available from: https://iris.who.int/handle/10665/42407.
Adair B, Ullenhag A, Rosenbaum P, Granlund M, Keen D, Imms C. Measures used to quantify participation in childhood disability and their alignment with the family of participation-related constructs: a systematic review. Dev Med Child Neurol. 2018;60(11):1101-16. doi: 10.1111/dmcn.13959
Imms C, Granlund M, Wilson PH, Steenbergen B, Rosenbaum PL, Gordon AM. Participation, both a means and an end: a conceptual analysis of processes and outcomes in childhood disability. Dev Med Child Neurol. 2017;59(1):16-25. doi: 10.1111/dmcn.13237
King GA, Law M, King S, Hurley P, Hanna S, Kertoy M, et al. Measuring children’s participation in recreation and leisure activities: construct validation of the CAPE and PAC. Child Care Health Dev. 2007;33(1):28-39. doi: 10.1111/j. 1365-2214.2006.00613.x
Coster W, Law M, Bedell G, Khetani M, Cousins M, Teplicky R. Development of the participation and environment measure for children and youth: conceptual basis. Disabil Rehabil. 2012;34(3):238-46. doi: 10.3109/09638288.2011.603017
Shields N, Epstein A, Jacoby P, Kim R, Leonard H, Reddihough D, et al. Modifiable child and caregiver factors that influence community participation among children with Down syndrome. Disabil Rehabil. 2022 Feb;44(4):600-7. doi: 10.1080/09638288.2020.1773945
Anaby D, Avery L, Gorter JW, Levin MF, Teplicky R, Turner L, et al. Improving body functions through participation in community activities among young people with physical disabilities. Dev Med Child Neurol. 2020;62(5):640-6. doi: 10.1111/dmcn.14382
Brugnaro BH, Lima CRG, Costa IGRD, Fernandes G, Campos ACD, Rosenbaum P, Pavão SL, Rocha NACF. Personal and environmental factors and household assistance in Down syndrome: cross-sectional study. An Acad Bras Cienc. 2024;96(suppl 1):e20230558. doi:
1590/0001-3765202420230558
Amaral MF, Drummond AF, Coster WJ, Mancini MC. Household task participation of children and adolescents with cerebral palsy, Down syndrome and typical development. Res Dev Disabil. 2014;35(2):414-22. doi: 10.1016/j.ridd.2013.11.021
Anaby D, Mercerat C, Tremblay S. Enhancing youth participation using the PREP intervention: parents’ perspectives. Int J Environ Res Public Health. 2017 2;14(9):1005. doi: 10.3390/ijerph14091005
Shikako-Thomas K, Shevell M, Schmitz N, Lach L, Law M, Poulin C, et al. Determinants of participation in leisure activities among adolescents with cerebral palsy. Res Dev Disabil. 2013;34(9):2621-34. doi: 10.1016/j.ridd.2013.05.013
Mobbs CA, Spittle AJ, Johnston LM. Participation measures for infants and toddlers aged birth to 23 months: a systematic review. Phys Occup Ther Pediatr. 2021;41(4):397-419. doi: 10.1080/01942638.2021.1900488
Lamash L, Bedell G, Josman N. Participation patterns of adolescents with autism spectrum disorder compared to their peers: parents’ perspectives. Br J Occup Ther. 2020;83(2):78-87. doi: 10.1177/0308022619853518
Hong DG, Jeong Y. Difference in home participation patterns and environmental factors between Korean children with and without disabilities. Disabil Rehabil. 2022;44(21):6340-7. doi: 10.1080/09638288.2021.1965230
Law M, King G, King S, Kertoy M, Hurley P, Rosenbaum P, et al. Patterns of participation in recreational and leisure activities among children with complex physical disabilities. Dev Med Child Neurol. 2006 May;48(5):337-42. doi: 10.1017/s0012162206000740
Wuang Y, Su CY. Patterns of participation and enjoyment in adolescents with Down syndrome. Res Dev Disabil. 2012;33(3):841-8. doi: 10.1016/j.ridd.2011.12.008
Anaby D, Law M, Coster W, Bedell G, Khetani M, Avery L, et al. The mediating role of the environment in explaining participation of children and youth with and without disabilities across home, school, and community. Arch Phys Med Rehabil. 2014 May;95(5):908-17. doi: 10.1016/j.apmr.2014.01.005
Rosenberg L, Bart O, Ratzon NZ, Jarus T. Personal and environmental factors predict participation of children with and without mild developmental disabilities. J Child Fam Stud. 2013;22(5):658-71. doi: 10.1007/s10826-012-9619-8
Klein BC, Busis NA. COVID-19 is catalyzing the adoption of teleneurology. Neurology. 2020;94(21):903-4. doi: 10.1212/wnl.0000000000009494
Rosenbaum P, Gorter JW. The “F-words” in childhood disability: I swear this is how we should think! Child Care Health Dev. 2012;38(4):457-63. doi: 10.1111/j.1365-2214.2011.01338.x
Li R, Rivers C, Tan Q, Murray MB, Toner E, Lipsitch M. The demand for inpatient and ICU beds for COVID-19 in the US: lessons from Chinese cities. medRxiv. 2020. doi: 10.1101/2020.03.09.20033241
Summers J, Baribeau D, Mockford M, Goldhopf L, Ambrozewicz P, Szatmari P, Vorstman J. Supporting Children with neurodevelopmental disorders during the COVID-19 pandemic. J Am Acad Child Adolesc Psychiatry. 2021;60(1):2-6. doi: 10.1016/j.jaac.2020.09.011
Hochman Y, Shpigelman CN, Holler R, Werner S. “Together in a pressure cooker”: Parenting children with disabilities during the COVID-19 lockdown. Disabil Health J. 2022;15(3):101273. doi: 10.1016/j.dhjo.2022.101273
Varengue R, Brochard S, Bouvier S, Bailly R, Houx L, Lempereur M, et al. Perceived impact of lockdown on daily life in children with physical disabilities and their families during the COVID-19 pandemic. Child Care Health Dev. 2022;48(6):942-55. doi: 10.1111/cch.12952
Zhang S, Hao Y, Feng Y, Lee NY. COVID-19 Pandemic impacts on children with developmental disabilities: service disruption, transition to telehealth, and child wellbeing. Int J Environ Res Public Health. 2022;19(6):3259. doi: 10.3390/ijerph19063259
Brugnaro BH, De Camargo OK, Corsi C, De Campos AC, Fernandes G, Pavão SL, et al. Functioning of children and adolescents with Down syndrome and the association with environmental barriers and facilitators during the COVID-19 pandemic. J Intellect Disabil. 2022;26(4):824-38. doi: 10.1177/17446295211032763
Kaya Kara O, Tonak HA, Kara K, Sonbahar Ulu H, Kose B, Sahin S, et al. Home participation, support and barriers among children with attention-deficit/hyperactivity disorder before and during the COVID-19 pandemic. Public Health. 2021;196:101-6. doi: 10.1016/j.puhe.2021.04.015
Rosenbaum PL, Silva M, Camden C. Let’s not go back to ‘normal’! lessons from COVID-19 for professionals working in childhood disability. Disabil Rehabil. 2021;43(7):1022-8. doi: 10.1080/09638288.2020.1862925
Cuschieri S. The STROBE guidelines. Saudi J Anaesth. 2019;13(5):31. doi: 10.4103/sja.sja_543_18
Hair JF, Black WC, Babin BJ, Anderson RE, Tatham RL. Multivariate data analysis. London: Pearson; 2014.
Coster W, Law M, Bedell G, Liljenquist K, Kao YC, Khetani M, et al. School participation, supports and barriers of students with and without disabilities. Child Care Health Dev. 2013 Jul;39(4):535-43. doi: 10.1111/cch.12046
Bedell GM, Khetani MA, Cousins MA, Coster WJ, Law MC. Parent perspectives to inform development of measures of children’s participation and environment. Arch Phys Med Rehabil. 2011;92(5):765-73. doi: 10.1016/j. apmr.2010.12.029
Khetani M, Marley J, Baker M, Albrecht E, Bedell G, Coster W, et al. Validity of the Participation and Environment Measure for Children and Youth (PEM-CY) for Health Impact Assessment (HIA) in sustainable development projects. Disabil Health J. 2014;7(2):226-35. doi: 10.1016/j. dhjo.2013.11.003
Galvão ÉRVP, Cazeiro APM, Campos ACD, Longo E. Measure of Participation and the Environment - Children and Youth (PEM-CY). J Occup Ther Univ São Paulo. 2018;29(3):237-45.
Silva Filho JAD, Cazeiro APM, Campos ACD, Longo E. Medida da Participação e do Ambiente – Crianças Pequenas (YC-PEM): tradução e adaptação transcultural para o uso no Brasil. Rev Ter Ocup Univ São Paulo (Online). 2019;30(3):140-9. doi: 10.11606/issn.2238-6149. v30i3p140-149
Ma M, Wang X, Qi P, Wang T. Affect, behaviors of children with intellectual disabilities and parents’ coping strategies during the COVID-19 pandemic. Front Psychiatry. 2022;13:822908. doi: 10.3389/fpsyt.2022.822908
Gjessing B, Jahnsen RB, Strand LI, Natvik E. Adaptation for participation! Disabil Rehabil Assist Technol. 2018;13(8):803-8. doi: 10.1080/17483107.2017.1384075
Williams U, Law M, Hanna S, Gorter JW. Personal, environmental, and family factors of participation among young children. Child Care Health Dev. 2019;45(3):448-56. doi: 10.1111/cch.12651
Chak A. Adult sensitivity to children’s learning in the zone of proximal development. J Theory Soc Behav. 2001;31(4):383-95. doi: 10.1111/1468-5914.00166
Whiteneck G, Dijkers MP. Difficult to measure constructs: conceptual and methodological issues concerning participation and environmental factors. Arch Phys Med Rehabil. 2009;90(11 Suppl):S22–35. doi: 10.1016/j.apmr.2009.06.009
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Copyright (c) 2025 Beatriz Helena Brugnaro, Isabelle Gansella Rocha da Costa , Gesica Fernandes, Olaf Kraus de Camargo, Silvia Letícia Pavão, Nelci Adriana Cicuto Ferreira Rocha
Este trabalho está licenciado sob uma licença Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.
