Palabras clave
Quality-of-Life
Microcephaly
Mothers
Nursing
Calidad-de-vida
Cuidadores
Enfermería
Madres
Microcefalia
Cuidadores
Enfermagem
Qualidade-de-Vida
Mães
Microcefalia
Cómo citar
Resumen
Introducción: Debido a la infección congénita, las niñas y los niños con microcefalia tienen grandes limitaciones en su estado de salud. Estas limitaciones hacen que necesiten más atención sanitaria y domiciliaria. Generalmente, la madre se convierte en la principal cuidadora y este papel puede llevar a la sobrecarga, con perjuicio para su calidad de vida.
Objetivo: Analizar la sobrecarga de cuidado y la calidad de vida de las madres o personas cuidadoras primarias de niñas o niños con microcefalia, relacionada con infección congénita.
Método: Estudio transversal, correlacional realizado con 105 participantes del estado de Sergipe, Brasil, de octubre de 2017 a abril de 2018, a través de la aplicación de los siguientes cuestionarios: sociodemográfico, el WHOQOL-Bref y escala de sobrecarga del cuidador. Para el análisis estadístico, se utilizaron ANOVA, prueba t y prueba Person (r).
Resultados: Población totalmente femenina. El 39 % se clasificó con sobrecarga severa y el 30.5 % con sobrecarga intensa. La sobrecarga media total (49.47) indica una clasificación de moderada a grave. Hubo una fuerte asociación (p<0.0001) entre los niveles de carga y los dominios de la calidad de vida, siendo los mayores daños ambientales (36.57) y físicos (38.53). Se observó una correlación significativa e inversamente proporcional (r=-0.547, p<0.0001) entre la calidad de vida y la sobrecarga de la persona cuidadora cuidador.
Conclusión: Las madres sufren una sobrecarga severa e intensa que influye negativamente en su calidad de vida. La enfermería puede contribuir para la creación e implementación de líneas de atención específicas para estas mujeres con énfasis en la promoción de la salud física y mental y la mejora de la calidad de vida.
Citas
Abbasi, AU. Zika virus infection: Vertical transmission and fetal congenital anomalies. J Ayub Med Coll Abbottabad [Internet]. 2016 [cited 2020 Apr 29];28(1):1. Available from: https://www.ncbi.nlm.nih.gov/pubmed/27323550.
Vianna RAO, Rua EC, Fernandes AR, Santos TCS, Dalcastel LAB, Santos MLB, et al. Experience in diagnosing congenital Zika syndrome in Brazilian children born to asymptomatic mothers. Acta Trop. 2020;e105438. doi: https://doi.org/10.1016/j.actatropica.2020.105438.
Almeida TM, Monteiro L, Souza MMDS, Santos GAA, Cardoso CW, Santos LM, et al. Brain abnormalities on neuroimaging in Children with Congenital Zika Syndrome in Salvador, Brazil, and its possible implications on neuropsychological development. Int J Dev Neurosci. 2020;80:189-196. doi: https://doi.org/10.1002/jdn.10016.
Pereira AM, Júnior EA, Werner H, Monteiro DLM. Zika Virus and Pregnancy: Association between Acute Infection and Microcephaly in Newborns in the State of Rio de Janeiro, Brazil. Geburtshilfe Frauenheilkd. 2020 Jan;80(01):60-5. doi: https://doi.org/ 10.1055/a-0972-2052.
Santos DBC, Silva EF, Lima SO, Reis FP, Oliveira CCC. Health Care Network: Maternal perception regarding the quality of care to children with microcephaly. Esc Anna Nery 2019;23(4):e20180335. doi: https://doi.org/10.1590/2177-9465-ean-2018-0335.
Araújo MGO, Dutra MOM, Freitas CCDL, Guedes TG, Souza FS, Baptista RS. Caring for the carer: quality of life and burden of female caregivers. Rev Bras Enferm. 2019;72(3):728-36. doi: https://doi.org/10.1590/0034-7167-2018-0334.
Andrade SFDO, Alves RF, Melo MDO, Rodrigues MJ. Quality of Life and Work Overload of Caretakers of Children with Cancer. Psicol Ciênc Prof. 2014;34(4):1014-31. doi: https://doi.org/10.1590/1982-370002332013.
Carona C, Pereira M, Moreira H, Silva N, Canavarro MC. The disability paradox revisited: Quality of life and family caregiving in pediatric cerebral palsy. J Child Fam Stud. 2013;22(7):971-86. doi: https://doi.org/10.1007/s10826-013-9825-z.
Leite MF, Gomes IP, Morais JD, Collet N. Impact on mothers’ lives of caring for children with chronic illnesses. Rev Enferm UERJ. 2015;23(4):501-6. doi: https://doi.org/10.12957/reuerj.2015.4966.
Macedo EC, Silva LRD, Paiva MS, Ramos MNP. Burden and quality of life of mothers of children and adolescents with chronic illnesses: an integrative review. Rev Lat Am Enfermagem. 2015;23(4):769-77. doi: https://doi.org/ 10.1590/0104-1169.0196.2613.
Dardas LA, Ahmad MM. Coping strategies as mediators and moderators between stress and quality of life among parents of children with autistic disorder. Stress Health. 2015;31(1):5-12. doi: https://doi.org/ 10.1002/smi.2513.
Amaral EG, Mendonça MS, Prudente COM, Ribeiro MFM. Quality of live and burden in children’s caregivers with down syndrome. Rev Movimenta [Internet]. 2011 [cited 2020 Apr 29];4(2):99-108. Available from: https://www.revista.ueg.br/index.php/movimenta/article/view/7142/5243
Associação Brasileira de Empresas de Pesquisa. (2018). Critério de classificação econômica Brasil. 2020 [acesso 24 ago2021]. Disponível em: https://www.abep.org/criterio-brasil
Fleck M, Louzada S, Xavier M, Chachamovich E, Vieira G, Santos L, Pinzon V. Application of the Portuguese version of the abbreviated instrument of quality life WHOQOL-bref. Rev Saude Publica. 2000;34(2):178-83. doi: https://doi.org/10.1590/S0034-89102000000200012.
Sequeira CAC. Adaptação e validação da Escala de Sobrecarga do Cuidador de Zarit. Revista referência [Internet]. 2010 [cited 2019 Apr 19]; 2(12):9-16. Available from: http://www.index-f.com/referencia/2010pdf/12-0916.pdf
Rodrigues JEG, Machado ALG, Vieira NFC, Fernandes AFC, Rebouças CBDA. Quality of life and work overload in family caregivers of elderly dependants. Cienc Enferm [Internet]. 2014 [cited 2020 Apr 29];20(3):119-29. Available from: http://www.redalyc.org/articulo.oa?id=370441817011
Souza LRD, Hanus JS, Libera D, Bolzan L, Silva VM, Mangilli EM et al. Overload in care, stress and impact on the quality of life of surveyed caregivers assisted in primary care. Cad Saude Colet. 2015;23(2):140-9. doi: https://doi.org/10.1590/1414-462X201500020063.
Nam SJ, Park EY. Relationship between caregiving burden and depression in caregivers of individuals with intellectual disabilities in Korea. J Ment Health. 2017;26(1):50-6. doi: https://doi.org/10.1080/09638237.2016.1276538.
Kuper H, Moreira MEL, Araújo TVB, Valongueiro S, Fernandes S, Pinto M, et al. The association of depression, anxiety, and stress with caring for a child with Congenital Zika Syndrome in Brazil; Results of a cross-sectional study. PLoS Negl Trop Dis. 2019;13(9):e0007768. doi: https://doi.org/ 10.1371/journal.pntd.0007768.
Ribé JM, Salamero M, Pérez-Testor C, Mercadal J, Aguilera C, Cleris M. Quality of life in family caregivers of schizophrenia patients in Spain: caregiver characteristics, caregiving burden, family functioning, and social and professional support. Int J Psychiatry Clin Pract. 2018;22(1):25-33. doi: https://doi.org/10.1080/13651501.2017.1360500.
Martins LFV, Meneghim MC, Martins LC, Pereira AC. Quality evaluation in health services based on perception of users and professional. Rev Fac Odontol. 2014;19(2):151-8. doi: https://doi.org /10.5335/rfo.v19i2.3566.
Feeley CA, Turner-Henson A, Christian BJ, Avis KT, Heaton K, Lozano D, Su X. Sleep quality, stress, caregiver burden, and quality of life in maternal caregivers of young children with bronchopulmonary dysplasia. J Pediatr Nurs. 2014 Jan;29(1):29-38. doi: https://doi.org/10.1016/j.pedn.2013.08.001]
Ramires CMN, Branco-Barreiro FCA, Peluso ÉTP. Quality of life related factors for parents of children with hearing loss. Ciênc Saúde Colet. 2016 Oct;21(10):3245-52. doi: https://doi.org/10.1590/1413-812320152110.224720.
Pereira ÉL, Bezerra JC, Brant JL, Araújo WND, Santos LMP. Profile of demand and Continuous Cash Benefits (BCP) granted to children diagnosed with microcephaly in Brazil. Cienc Saude Colet. 2017 Nov;22(11):3557-66. DOI: https://doi.org/10.1590/1413-812320172211.22182017.
Oliveira ARDS, Costa AGDS, Sousa VECD, Araujo TLD, Silva VMD, Lopes MVDO, et al. Scales for evaluation of the overload of caregivers of patients with Stroke. Rev Bras Enferm. 2012 Sept-Oct;65(5):839-43. doi: http://dx.doi.org/10.1590/S0034-71672012000500018.
Misquiatti ARN, Brito MC, Ferreira FTS, Junior FBA. Burden of family and children with autism spectrum disorders: perspective of caregivers. Rev CEFAC [Internet]. 2015 Jan-Feb [cited 2020 Apr 29];17(1):192-200. Disponível em: http://www.redalyc.org/articulo.oa?id=169338408022.
Piovesan J, Scortegagna SA, Marchi ACBD. Quality of life and depressive symptomatology in mothers of individuals with autism. Psico-USF. 2015 Sept-Dec;20(3):505-15. doi: http://dx.doi.org/10.1590/1413-82712015200312.
Martín J, Padierna A, Aguirre U, González N, Muñoz P, Quintana JM. Predictors of quality of life and caregiver burden among maternal and paternal caregivers of patients with eating disorders. Psychiatry Res. 2013 Dec;210(3):1107-15. doi: https://doi.org/10.1016/j.psychres.2013.07.039.
Piovesan J, Scortegagna SA, Marchi ACBD. Quality of life and depressive symptomatology in mothers of individuals with autism. Psico-USF. 2015 Sept-Dec;20(3):505-15. doi: http://dx.doi.org/10.1590/1413-82712015200312.
Nardi EDFR, Sawada NO, Santos JLF. The association between the functional incapacity of the older adult and the family caregiver’s burden. Rev Lat Am Enfermagem. 2013 Sept-Oct;21(5):1096-103. doi: http://dx.doi.org/10.1590/S0104-11692013000500012.
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Esta obra está bajo una licencia internacional Creative Commons Atribución-NoComercial-CompartirIgual 4.0.
Derechos de autor 2023 Daniel Batista Conceição dos Santos , Luana da Conceição Costa Cardoso , Andréia Poschi Barbosa Torales, Francisco Prado Reis II , Cristiane Costa da Cunha Oliveira , Sonia Oliveira Lima