Factors associated with the quality of life of mothers of patients with Autism Spectrum Disorder
10.15343/0104-7809.202246043053
Keywords:
Autism Spectrum Disorder. Quality-of-life. Caregivers. Caregiver Burnout.Abstract
Autism Spectrum Disorder (ASD) is defined as a syndrome that interferes with neurodevelopment. Considered a chronic disorder, it requires special care from mothers and may compromise their quality of life. This study aimed to evaluate the factors associated with health-related quality of life of mothers of ASD children. This is a cross-sectional, descriptive, and analytical study. An instrument developed by the authors was used to assess the mother's sociodemographic variables and variables related to the child's health and the WHOQOL-Bref instrument to assess the mothers' quality of life. 77 mothers participated in the study. Most mothers were between 30 and 45 years old (60.6%), were white (61.04%), and had completed high school (52.9%). Concerning the children, 37.7% were between 5 and 10 years old, most without physical limitations (93.55%) and were male (77.92%). There was an association between the lowest score in the physical domain of the mother's quality of life and the male sex of the child (p=0.046); the variable single marital status was associated with lower scores in the psychological domains (p=0049) and social relationships (p=0.025). It is concluded that support measures are necessary to improve the physical, psychological, and social domains of mothers of autistic children, especially those who are single and do not have the support of a spouse.
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References
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19. Moraes TPB. Autismo: entre a alta sistematização e a baixa empatia. Um estudo sobre a hipótese de Hiper Masculinização do cérebro do espectro autista. Revista Pilquen. 2014;15(11):1-19. Recuperado de http://revele.uncoma.edu.ar/htdoc/revele/index.php/ psico/article/view/2094
20. Schaafsma S, Pfaff D. Etiologies underlying sex differences in Autism Spectrum Disorders. Front Neuroendocrinol. 2014;35(3):255- 71. https://doi.org/10.1016/j.yfrne.2014.03.006.
21. Losapio MF, Furtado EF. Qualidade de vida em cuidadores de crianças e adolescentes com transtorno do espectro autista: estudo comparativo entre sexos. Cad PPGDD. 2020;20(2):138-54. https://doi.org/10.5935/cadernosdisturbios.v20n2p138-154
22. Zanatta EA, Menegazzo E, Guimarães AN, Ferraz L, Motta MGC. Cotidiano de famílias que convivem com o autismo infantil. Rev Baiana Enferm. 2014 ;28(3):271-82. https://doi.org/10.18471/rbe.v28i3.10451
2. Rice CN, Nicholas J, Baio J, Pettygrove S, Lee L, Braun KVN et al. Changes in autism spectrum disorder prevalence in 4 areas of the United States. Disabil Health J. 2010;3:186-201. https://doi.org/10.1016/j.dhjo.2009.10.008
3. Maenner MJ, Shaw KA, Baio J, Washington A, Patrick M, DiRienzo M et al. Prevalence of Austism Spectrum Disorder among children aged 8 years – Autism and developmental disabilities monitoring network, 11 sites, United States. 2016. MMWR Surveill Summ 2020;69(4):01-16. https://doi.org/10.15585/mmwr.ss6904a1
4. Sullivan WF, Diepstra H, Heng J, Ally S, Bradley E, Casson I, et al. Primary care of adults with intellectual and developmental disabilities. Can Fam Physician. 2018;64(4):254-79. Acesso em 18 de agosto de 2020. Disponível em: https://www.cfp.ca/content/ cfp/64/4/254.full.pdf
5. Gatozoyia D, Kotsis K, Koullourou I, Goulia P, Carvalho AF, Soulis S et al. The association of illness perceptions with depressive symptoms and general psychological distress in parents of an offspring with autism spectrum disorder. Disabil Health J. 2014;7(2):173- 80. https://doi.org/10.1016/j.dhjo.2013.10.008
6.The Whoqol Group. The world health organization quality of life assessment (WHOQOL): position paper from the world health organization. Soc Sci Med. 1995;41(10):1403-9. https://doi.org/10.1016/0277-9536(95)00112-k
7. Piovesan J, Scartegagna SA, Marchi ACB. Quality of life and depressive symptomatology in mothers of individuals with autism. Psico- USF. 2015;20(3):505-15. https://doi.org/10.1590/1413-82712015200312
8. Santos JAR. Cronbach’s Alpha: A tool for assessing the reliability of scales. Journal of Ext. 1999;37(2)1-5.
9. Fleck MPA, 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”. Rev Saúde Pública. 2000;34(2):178-83. https://doi.org/10.1590/ S0034-89102000000200012
10. Moxoto GFA, Magris LEN. Avaliação de treino de controle do stress para mães de crianças com Transtornos do Espectro Autista. Psiol Reflex Crit. 2015:28(4):772-9. https://doi.org/10.1590/1678-7153.201528415
11. Rendon DCS, Salimena AMO, Amorim TV, Paiva ACPC, Melo MCSC, Batista BLV. Convivência com filhos com Transtorno do Espectro Autista: desvelando sentidos do ser-aí-mãe. Rev Baiana enferm. 2019;33:1-8. https://doi.org/10.18471/rbe.v33.31963
12. Aguiar MCM, Pondé MP. Parenting a child with autism. J Bras Psiquiatr. 2019;68(1):42-7. https://doi.org/10.1590/0047- 2085000000223
13. Chaim MPM, Neto SBC, Pereira AF, Costa VESM. Fenomenologia da qualidade de vida de mães de crianças autistas. Rev Abordagem Gestalt. 2020;26(2):122-34. https://doi.org/10.18065/2020v26n2.1
14. Hartley SL, Barker ET, Seltzer MM, Floyd F, Greenberg J, Orsmond G et al. The relative risk and timing of divorce in families of children with an autism spectrum disorder. J Fam Psychol. 2010;24(4):449-57. https://doi.org/10.1037/a0019847
15. Tabeleão VP, Tomas E, Quevedo LA. Sobrecarga de familiares de pessoas com transtorno psí¬quico: níveis e fatores associados. Rev Psiq Clin. 2014;41(3):63-6. https://doi.org/10.1590/0101-60830000000012
16. Cidav Z, Marcus SC, Mandell DS. Implications of childhood autismo for parental employment and earnings. Pediatrics. 2012;129(4):617-23. https://doi.org/10.1542/peds.2011-2700
17. Longato-Morais CR, Prado MCR, Yamada MO. Implante coclear e transtorno do espectro autista: vivência das mães. Psicol Estud. 2017;22(4):551-61. https://doi.org/10.4025/psicolestud.v22i4.35371
18. Mathew NE, Burton KLO, Schierbeek A, Crncec R, Walter A, Eapen V. Parenting preschoolers with autism: Socioeconomic influences on wellbeing and sense of competence. World J Psychiatr. 2019;9(2):30-46. https://doi.org/10.5498/wjp.v9.i2.30
19. Moraes TPB. Autismo: entre a alta sistematização e a baixa empatia. Um estudo sobre a hipótese de Hiper Masculinização do cérebro do espectro autista. Revista Pilquen. 2014;15(11):1-19. Recuperado de http://revele.uncoma.edu.ar/htdoc/revele/index.php/ psico/article/view/2094
20. Schaafsma S, Pfaff D. Etiologies underlying sex differences in Autism Spectrum Disorders. Front Neuroendocrinol. 2014;35(3):255- 71. https://doi.org/10.1016/j.yfrne.2014.03.006.
21. Losapio MF, Furtado EF. Qualidade de vida em cuidadores de crianças e adolescentes com transtorno do espectro autista: estudo comparativo entre sexos. Cad PPGDD. 2020;20(2):138-54. https://doi.org/10.5935/cadernosdisturbios.v20n2p138-154
22. Zanatta EA, Menegazzo E, Guimarães AN, Ferraz L, Motta MGC. Cotidiano de famílias que convivem com o autismo infantil. Rev Baiana Enferm. 2014 ;28(3):271-82. https://doi.org/10.18471/rbe.v28i3.10451
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Published
2022-05-01
How to Cite
Gonçalves de Castro, G., Silva Vieira, A. L., & de Freitas Santos, N. M. (2022). Factors associated with the quality of life of mothers of patients with Autism Spectrum Disorder: 10.15343/0104-7809.202246043053. O Mundo Da Saúde, 46, 043–053. Retrieved from https://revistamundodasaude.emnuvens.com.br/mundodasaude/article/view/1317
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