Social aspects, work overload, and quality of life among mothers of children with microcephaly
Main Article Content
Abstract
Introduction: Taking care of children with microcephaly is a great challenge for their care providers because of the associated social vulnerability, work overload, and loss of quality of life.
Objective: To analyze the associations related to the social aspects, the quality of life, and the work overload among care providing mothers of children with microcephaly.
Methodology: This is a transversal study with 105 participants. Social and demographic questionnaires and WHOQOL-BREF were used. ANOVA tests, Student’s t-test, and Pearson’s correlation coefficient were calculated.
Results: 65.7 % were of mixed ethnicity; 88.6 % were unemployed; 76.2 % were dependent on Social Welfare; 50.5 % had a low level of education; and 90.5 % were financially insufficient. The social domain average was considered low (51.11). An association was found between social benefits and quality of life (p= 0.046). 39 % of these mothers suffer from severe work overload while 30.4 % suffer from intense work overload. An association was found between the levels of work overload and ethnicity (p= 0.027), occupation (p= 0.043), and transportation means (p <0.0001). Work overload had a negative impact on the quality of life (r= -.463, p <0.0001), the perception of quality of life (r= -.476, p= <0.0001), and total quality of life (r= -.576, p= <0.0010).
Conclusions: These care providing mothers suffer work overload with an associated loss of quality of life. Social aspects have a direct influence and can increase work overload. Nursing professionals have a fundamental role in the creation and implementation of attention initiatives aimed at promoting health and relief to this kind of care providing mothers.
Article Details
Dimensions citation
MÉTRICAS
References
Abbasi AU. Zika virus infection: Vertical transmission and foetal congenital anomalies. J Ayub Med Coll Abbottabad. 2016; 28(1): 1-2. https://bit.ly/3DznEeA
Artimos-de Oliveira Vianna R, Conti-Rua E, Ribeiro-Fernandes A, Sarmet-dos Santos TC, Bataglin-Dalcastel LA, Bernardes-dos Santos ML, et al. Experience in diagnosing congenital Zika syndrome in Brazilian children born to asymptomatic mothers. Acta Trop. 2020; 206: 1-6. https://doi.org/10.1016/j.actatropica.2020.105438
Gordon-Lipkin E, Gentner MB, German R, Leppert ML. Neurodevelopmental outcomes in 22 children with microcephaly of different etiologies. J Child Neurol. 2017; 32(9): 804-9. https://doi.org/10.1177/0883073817707301
Pereira-da Silva Rodrigues Félix V, De Farias AM. Microcefalia e dinâmica familiar: a percepção do pai frente à deficiência do filho. Cad. Saúde Pública. 2019; 34(12): 1-11. https://doi.org/10.1590/0102-311X00220316
Macedo EC, Da Silva LR, 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. http://dx.doi.org/10.1590/0104-1169.0196.2613
Salazar-Barajas ME, Garza-Sarmiento EG, García-Rodríguez SN, Juárez-Vázquez PY, Herrera-Herrera JL, Duran-Badillo T. Funcionamiento familiar, sobrecarga y calidad de vida del cuidador del adulto mayor con dependencia funcional. Enferm. univ. 2019; 16(4): 362-73. https://doi.org/10.22201/eneo.23958421e.2019.4.615
Andrade SF, Alves RF, Melo M, Rodrigues MJ. Qualidade de Vida e Sobrecarga de Cuidadores de Crianças com Câncer. Psicol. cienc. prof. 2014; 34(4): 1014-32. https://doi.org/10.1590/1982-370002332013
Gonçalves AE, Brazil-Tenório SD, Correira-da Silva Ferraz P. Socioeconomic aspects of genitors of children with microcefalia related to Zika Virus. Braz J Phys Ther. 2018; 8(2): 155-66. http://dx.doi.org/10.17267/2238-2704rpf.v8i2.1865
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. http://dx.doi.org/10.1590/S0034-89102000000200012
Pereira ÉL, Cruz-Bezerra J, Lotufo-Brant J, Navegantes-de Araújo W, Pacheco-Santos LM. Perfil da demanda e dos Benefícios de Prestação Continuada (BPC) concedidos a crianças com diagnóstico de microcefalia no Brasil. Ciênc. Saúde colet. 2017; 22(11): 3557-66. https://doi.org/10.1590/1413-812320172211.22182017
Da Cruz-Sequeira CA. Adaptação e validação da Escala de Sobrecarga do Cuidador de Zarit. Rev. Ref. 2010; 2(12): 9-16. https://bit.ly/3DwOioD
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; 210(3): 1107-15. https://doi.org/10.1016/j.psychres.2013.07.039
Nunes-Misquiatti AR, Brito MC, Schmidtt-Ferreira FT, Baptista-Assumpção Junior FBA. Sobrecarga familiar e crianças com transtornos do espectro do autismo: perspectiva dos cuidadores. Rev CEFAC. 2015; 17(1): 192-200. https://doi.org/10.1590/1982-0216201520413
Dos Santos-Costa E, Gomes-Bonfim E, De Lima-Brito Magalhães R, Mello-Viana LM. Mothers’ experiences of children with microcephaly. Rev Rene. 2018; 19: 1-8. https://bit.ly/3nrW5N5
Santos-Bosaipo D, Carvalho-Lamy Z, Soares-de Oliveira P, Ribeiro-de Paula Gomes CM, Ribeiro-Mendes de Assis M, Rodrigues-Costa Ribeiro M, et al. Itinerário terapêutico de crianças com microcefalia pelo vírus Zika. Ciênc. saúde coletiva. 2019; 26(6): 2271-80. https://doi.org/10.1590/1413-81232021266.19152019
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. https://doi.org/10.1080/13651501.2017.1360500
Fernandes-Volpato Martins L, De Castro-Meneghim M, Martins LC, Pereira AC. Avaliação da qualidade nos serviços públicos de saúde com base na percepção dos usuários e dos profissionais. RFO UPF. 2014; 19(2): 151-8. http://dx.doi.org/10.5335/rfo.v19i2.3566
Carneiro-de Resende T, Piantino-Dias E, Medeiros-Crunivel Cunha C, Silva-de Mendonça G, Lopes-Ribeiro Junior A, De Lima-Santos LR, et al. Participação paterna no período da amamentação: importância e contribuição. Biosci j. 2014; 30(3): 925-32. https://bit.ly/3kFvg6X
Vieira ML, Nunes-Bossardi C, Beltrão-Gomes L, Azeredo-Bolze SD, Crepaldi MA, Piccinini CA. Paternidade no Brasil: revisão sistemática de artigos empíricos. Arq. Bras. Psicol. 2014; 66(2): 36-52. https://bit.ly/2WGFxaW
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: 971-86. https://doi.org/10.1007/s10826-012-9659-0
Roncada C, Soldera K, Andrade J, Bischoff LC, Martininghi-Bugança B, De Araujo-Cardoso, et al. Avalição da qualidade de vida de pais e cuidadores de crianças asmáticas. Rev Paul Pediatr. 2018; 36(4): 451-6. https://doi.org/10.1590/1984-0462/;2018;36;4;00012
Oliveira-Souza D, Ericson-Vicente da Silva S, De Oliveira-Silva N. Determinantes Sociais da Saúde: reflexões a partir das raízes da “questão social”. Saúde Soc. 2013; 22(1): 44-56. https://bit.ly/3gOmIcQ
De Moura-Souza J, Camara-Machado FR, Pereira-Antunes P, Cardoso-Santos A, Centenaro-Levandowski D, Alves-de Oliveira Junior A. Quality of life and burden in caregivers of children with cerebral palsy. Rev Bras Promoç Saúde. 2018; 31(3): 1-10. https://doi.org/10.5020/18061230.2018.7748
Ferreira-de Costa T, De Freitas- Macêdo Costa KN, Das Graças-Melo Fernandes M, Pereira-Martins K, Da Silva-Brito S. Quality of life of caregivers for patients of cerebrovascular accidents: association of (socio-demographic) characteristics and burden. Rev Esc Enferm USP. 2015; 49(2): 243-50. https://doi.org/10.1590/S0080-623420150000200009
Pio-AstolphoI M, Cavicchioli-Okido AC, García-Lima RA. Rede de cuidados a crianças com necessidades especiais de saúde. Rev Bras Enferm. 2014; 67(2): 213-9. http://dx.doi.org/10.5935/0034-7167.20140028
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Enfermería Universitaria by Universidad Nacional Autónoma de México it is distributed under the License Creative Commons Attribution - NonCommercial - NoDerivatives 4.0 International
Accepted and published articles become open-access under the terms of the Creative Commons CC BY-NC-ND 4.0 license, which authorizes the reproduction and sharing without commercial purposes, provided the corresponding acknowledgments to their authors. Authors are allowed to manage a self-archive copy of the article’s published version so that they can open-access it in their personal or institutional web pages, and/or any other broad-diffusion space.