Quality of life and caregiver burden in mothers of children with microcephaly.
DOI:
https://doi.org/10.15517/f20yqj14Keywords:
Caregivers, Quality of Life, Microcephaly, Mothers, NursingAbstract
Introduction: Due to congenital infection, children with microcephaly have great limitations due to this
condition. These limitations make the child need more health and home care. Generally, the mother
becomes the main caretaker for this child, this role can lead to overload feelings that affect their quality
of life.
Objective: To analyze the role overload and the quality of life of mothers or primary caregiver of
children with microcephaly related to congenital infection.
Method: Cross-sectional, correlational study carried out with 105 participants from the state of Sergipe,
Brazil, during the period from October 2017 to April 2018, through the application of questionnaires:
sociodemographic, WHOQOL-Bref, and caregiver burden. For statistical analysis, ANOVA, t-test, and
Pearson (r) tests were used.
Results: All of the participants were females, 39 % were classified with severe role overload and 30.5%
with intense role overload. The total average of this caregiver burden (49.47) presents a moderate to
severe classification. There was a strong correlation (p<0.0001) between the levels of their role
overload and the domains of their quality of life, where the greatest damage was in the environmental
(36.57) and physical (38.53) aspects. A significant and inversely proportional correlation (r=-0.547,
p<0.0001) was observed between the quality of life and the caregiver burden.
Conclusion: Mothers suffer severe and intense caregiver overload that has a negative influence on their
quality of life. Nursing can contribute to the creation and implementation of specific lines of care for
these women emphasizing the promotion of physical and mental health to improve their quality of life.
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References
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. 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. 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. 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. 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. 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. 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. DOI: https://doi.org/10.1007/s10826-012-9659-0
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. 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. 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. 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. 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 DOI: https://doi.org/10.4067/S0717-95532014000300011
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. 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. 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. 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. 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] 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. 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. 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. DOI: https://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. DOI: https://doi.org/10.1590/1982-0216201520413
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. 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. DOI: https://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. DOI: https://doi.org/10.1590/S0104-11692013000500012
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Copyright (c) 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
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