Caring for children with Congenital Zika Syndrome: The unmet needs of mothers in Southern Colombia

References

• Albuquerque, M. S. V., Lyra, T. M., Melo, A. P. L., Valongueiro, S. A., Araújo, T. V. B., Pimentel, C., Moreira, M. C. N., Mendes, C. H. F., Nascimento, M., Kuper, H., & Penn-Kekana, L. (2019). Access to healthcare for children with Congenital Zika Syndrome in Brazil: Perspectives of mothers and health professionals. Health Policy and Planning, 34(7), 499–507. https://doi.org/10.1093/heapol/czz059
   PubMed Web of Science ®Google Scholar
• Allen, K. R. (2016). Feminist theory in family studies: History, reflection, and critique. Journal of Family Theory & Review, 8(2), 207–224. https://doi.org/10.1111/jftr.12133
   Web of Science ®Google Scholar
• Amato, V. (2018). The social construction of a possible male gender bias is negatively impacting fathers in child welfare services: Hammering a square peg into a round hole. Journal of Human Behavior in the Social Environment, 28(4), 466–474. https://doi.org/10.1080/10911359.2018.1426071
   Web of Science ®Google Scholar
• Aplin, T., Thornton, H., & Gustafsson, L. (2018). The unique experience of home for parents and carers of children with disabilities. Scandinavian Journal of Occupational Therapy, 25(4), 260–266. https://doi.org/10.1080/11038128.2017.1280079
   PubMed Web of Science ®Google Scholar
• Bahr, H. M., & Bahr, K. S. (2001). Families and self-sacrifice: Alternative models and meanings for family theory. Social Forces, 79(4), 1231–1258. https://doi.org/10.1353/sof.2001.0030
   Web of Science ®Google Scholar
• Bailey, D. B., & Ventura, L. O. (2018). The likely impact of Congenital Zika Syndrome on families: Considerations for family supports and services. Pediatrics, 141(Suppl. 2), S180–S187. https://doi.org/10.1542/peds.2017-2038G
   PubMedGoogle Scholar
• Barbeito-Andrés, J., Schuler-Faccini, L., & Garcez, P. P. (2018). Why is Congenital Zika Syndrome asymmetrically distributed among human populations? PLoS Biology, 16(8), e2006592. https://doi.org/10.1371/journal.pbio.2006592
   PubMed Web of Science ®Google Scholar
• Carla da Silva Reis, M., Araújo Carvalho, A. C., Souza Tavares, C. S., Santos, V. S., Santos Jr., H. P., & Saquete Martins-Filho, P. R. (2020). Changes in occupational roles and common mental disorders in mothers of children with Congenital Zika Syndrome. The American Journal of Occupational Therapy, 74(1), 7401345010p1–7401345010p5. https://doi.org/10.5014/ajot.2019.035972
   PubMed Web of Science ®Google Scholar
• Cuevas, E. L., Tong, V. T., Rozo, N., Valencia, D., Pacheco, O., Gilboa, S. M., Mercado, M., Renquist, C. M., González, M., Ailes, E. C., Duarte, C., Godoshian, V., Sancken, C. L., Turca, A. M., Calles, D. L., Ayala, M., Morgan, P., Perez, E. N., Bonilla, H. Q., … Martínez, M. L. O. (2016). Preliminary report of microcephaly potentially associated with Zika virus infection during pregnancy – Colombia, January–November 2016. MMWR. Morbidity and Mortality Weekly Report, 65(49), 1409–1413. https://doi.org/10.15585/mmwr.mm6549e1
   PubMed Web of Science ®Google Scholar
• DiGiacomo, M., Green, A., Delaney, P., Delaney, J., Patradoon-Ho, P., Davidson, P. M., & Abbott, P. (2017). Experiences and needs of carers of aboriginal children with a disability: A qualitative study. BMC Family Practice, 18(1), 96. https://doi.org/10.1186/s12875-017-0668-3
   PubMedGoogle Scholar
• dos Santos Oliveira, S. J. G., dos Reis, C. L., Cipolotti, R., Gurgel, R. Q., Santos, V. S., & Martins-Filho, P. R. S. (2017). Anxiety, depression, and quality of life in mothers of newborns with microcephaly and presumed Congenital Zika virus infection: A follow-up study during the first year after birth. Archives of Women’s Mental Health, 20(3), 473–475. https://doi.org/10.1007/s00737-017-0724-y
   PubMed Web of Science ®Google Scholar
• Elpidio de Sá, F., Maria Girão de Andrade, M., Mariana Coelho Nogueira, E., Soares Monteiro Lopes, J., Paula Érika Pinheiro Silva, A., & Maria Veras de Assis A. (2017). Parental needs in the care for children with Zika virus-induced microcephaly. Revista Brasileira em Promoção da Saúde, 30(4), 1–10. https://doi.org/10.5020/18061230.2017.6629
   Google Scholar
• Freire, I. M., Pone, S. M., Ribeiro, M. D. C., Aibe, M. S., Pone, M. V. D. S., Moreira, M. E. L., & Dupret, L. (2018). Congenital Zika virus syndrome in infants: repercussions for the promotion of families’ mental health. Cadernos de Saúde Pública, 34(9), e00176217. https://doi.org/10.1590/0102-311x00176217
   PubMed Web of Science ®Google Scholar
• Freitas, P. S. S., Soares, G. B., Mocelin, H. J. S., Lacerda, L. C. X., do Prado, T. N., Sales, C. M. M., Perez, F., Bussinger, E. C. A., & Maciel, E. L. N. (2019). Congenital Zika syndrome: Sociodemographic profile of mothers [Síndrome congênita do vírus Zika: perfil sociodemográfico das mães]. Pan American Journal of Public Health, 43, e24–e24. https://doi.org/10.26633/RPSP.2019.24
   PubMedGoogle Scholar
• Freitas, P. S. S., Soares, G. B., Mocelin, H. J. S., Lamonato, L. C. X. L., Sales, C. M. M., Linde-Arias, A. R., Bussinger, E. C. A., & Maciel, E. L. N. (2020). How do mothers feel? Life with children with Congenital Zika Syndrome. International Journal of Gynecology & Obstetrics, 148(Suppl. 2), 20–28. https://doi.org/10.1002/ijgo.13044
   PubMedGoogle Scholar
• Gilligan, C. (1982). In a different voice: Psychological theory and women’s development. Harvard University Press.
   Google Scholar
• Gomez, H. M., Mejia, C., & Ocampo, J. A. (2020). A qualitative study of the experiences of pregnant women in accessing healthcare services during the Zika virus epidemic in Villavicencio. Colombia, 2015–2016. Gynecology & Obstetrics, 148(Suppl. 2), 29–35. https://doi.org/10.1002/ijgo.13045
   Google Scholar
• Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24(2), 105–112. https://doi.org/10.1016/j.nedt.2003.10.001
   PubMed Web of Science ®Google Scholar
• Gray, D., & Mishtal, J. (2019). Managing an epidemic: Zika interventions and community responses in Belize. Global Public Health, 14(1), 9–22. https://doi.org/10.1080/17441692.2018.1471146
   PubMed Web of Science ®Google Scholar
• Kiernan, J., Mitchell, D., Stansfield, J., & Taylor, C. (2017). Mothers’ perspectives on the lived experience of children with intellectual disability and challenging behaviour. Journal of Intellectual Disabilities. https://doi.org/10.1177/1744629517737149
   Google Scholar
• Knight, K. (2013). The changing face of the ‘good mother’: Trends in research into families with a child with intellectual disability, and some concerns. Disability & Society, 28(5), 660–673. https://doi.org/10.1080/09687599.2012.732540
   Web of Science ®Google Scholar
• Kotzky, K., Allen, J. E., Robinson, L. R., Satterfield-Nash, A., Bertolli, J., Smith, C., Ornelas Pereira, I., Faria e Silva Santelli A. C., & Peacock, G. (2019). Depressive symptoms and care demands among primary caregivers of young children with evidence of Congenital Zika virus infection in Brazil. Journal of Developmental & Behavioral Pediatrics, 40(5), 344–353. https://doi.org/10.1097/DBP.0000000000000666
   PubMed Web of Science ®Google Scholar
• Krueger, R. A., & Casey, M. A. (2015). Focus groups: A practical guide for applied research (5th ed). SAGE Publications.
   Google Scholar
• Kruks, S. (1992). Gender and subjectivity: Simone de Beauvoir and contemporary feminism. Signs: Journal of Women in Culture and Society, 18(1), 89–110. www.jstor.org/stable/3174728. https://doi.org/10.1086/494780
   Web of Science ®Google Scholar
• Kuper, H., Lopes Moreira, M. E., Barreto de Araújo, T. V., Valongueiro, S., Fernandes, S., Pinto, M., Lyra, T. M., & Lacerda, M. V. G. (2019a). 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 Neglected Tropical Diseases, 13(9), e0007768. https://doi.org/10.1371/journal.pntd.0007768
   PubMed Web of Science ®Google Scholar
• Kuper, H., Lyra, T. M., Moreira, M. E. L., de Albuquerque, M. D. S. V., de Araújo, T. V. B., Fernandes, S., Jofre-Bonet, M., Larson, H., Lopes de Melo, A. P., Mendes, C. H. F., Moreira, M. C. N., do Nascimento, M. A. F., Penn-Kekana, L., Pimentel, C., Pinto, M., Simas, C., & Valongueiro, S. (2019b). Social and economic impacts of Congenital Zika Syndrome in Brazil: Study protocol and rationale for a mixed-methods study. Wellcome Open Research, 3, 127–127. https://doi.org/10.12688/wellcomeopenres.14838.2
   PubMedGoogle Scholar
• Laza, C., Vélez, M. E., Lasso, J., Briones, E., & Gea, M. (2021a). Experiencias de mujeres con infección prenatal de virus Zika quedecidieron continuar con la gestación en Colombia [Experience of women with prenatal Zika virus infection who continued gestation in Colombia]. Gac Sanit, 35(5), 465–472. https://doi.org/10.1016/j.gaceta.2020.02.014
   PubMedGoogle Scholar
• Laza, C., Castaño, P. A., Sinisterra, J. P., Gea, M., & Briones, E. (2021b). El cuidado de los niños(as) con el síndrome congénito de Zika en Colombia: consecuencias en la vida de las mujeres [Caring for children with Zika congenital syndrome in Colombia: Consequences for women's lives]. Aten Primaria, 53(3), 101972. https://doi.org/10.1016/j.aprim.2021.101972
   PubMed Web of Science ®Google Scholar
• MacDonald, P. D. M., & Holden, E. W. (2018). Zika and public health: Understanding the epidemiology and information environment. Pediatrics, 141(Suppl. 2), S137–S145. https://doi.org/10.1542/peds.2017-2038B
   PubMedGoogle Scholar
• Nithiyanantham, S. F., & Badawi, A. (2019). Maternal infection with Zika virus and prevalence of congenital disorders in infants: Systematic review and meta-analysis. Canadian Journal of Public Health, 110(5), 638–648. https://doi.org/10.17269/s41997-019-00215-2
   PubMed Web of Science ®Google Scholar
• Ospina, M. L., Tong, V. T., Gonzalez, M., Valencia, D., Mercado, M., Gilboa, S. M., Rodriguez, A. J., Tinker, S. C., Rico, A., Winfield, C. M., Pardo, L., Thomas, J. D., Avila, G., Villanueva, J. M., Gomez, S., Jamieson, D. J., Prieto, F., Meaney-Delman, D., Pacheco, O., & Honein, M. A. (2020). Zika virus disease and pregnancy outcomes in Colombia. New England Journal of Medicine, 383(6), 537–545. https://doi.org/10.1056/NEJMoa1911023
   PubMed Web of Science ®Google Scholar
• Pan American Health Organization. (2018, June 4). Zika cumulative cases 2018. https://www.paho.org/hq/index.php?option=com_content&view=article&id=12390:zika-cumulative-cases&Itemid=42090&lang=en.
   Google Scholar
• Rashid, M., Caine, V., & Goez, H. (2015). The encounters and challenges of ethnography as a methodology in health research. International Journal of Qualitative Methods, 14(5). https://doi.org/10.1177/1609406915621421
   Google Scholar
• Romero-Acosta, K., Marbán-Castro, E., Arroyo-Alvis, K., Arrieta, G., & Mattar, S. (2020). Perceptions and emotional state of mothers of children with and without microcephaly after the Zika virus epidemic in rural Caribbean Colombia. Behavioral Sciences, 10(10), 147. https://doi.org/10.3390/bs10100147
   Web of Science ®Google Scholar
• Satterfield-Nash, A., Kotzky, K., Allen, J., Bertolli, J., Moore, C. A., Pereira, I. O., Pessoa, A., Melo, F., Santelli, A. C. F. E. S., Boyle, C. A., & Peacock, G. (2017). Health and development at age, 19–24. Months of 19 children who were born with microcephaly and laboratory evidence of congenital Zika virus infection during the 2015 Zika virus outbreak – Brazil, 2017. MMWR Morbidity and Mortality Weekly Report, 66(49), 1347–1351. https://doi.org/10.15585/mmwr.mm6649a2
   PubMed Web of Science ®Google Scholar
• Smythe, T., Duttine, A., Vieira, A. C. D., Castro, B. D. S. M., & Kuper, H. (2019). Engagement of fathers in parent group interventions for children with Congenital Zika Syndrome: A qualitative study. International Journal of Environmental Research and Public Health, 16(20), 3862. https://doi.org/10.3390/ijerph16203862
   Web of Science ®Google Scholar
• Souza, W. V., Albuquerque, M. F. P. M., Vazquez, E., Bezerra, L. C. A., Mendes, A. D. C. G., Lyra, T. M., Araujo, T. V. B., Oliveira, A. L. S., Braga, M. C., Ximenes, R. A. A., Miranda-Filho, D. B., Cabral Silva, A. P. S., Rodrigues, L., & Martelli, C. M. T. (2018). Microcephaly epidemic related to the Zika virus and living conditions in Recife, Northeast Brazil. BMC Public Health, 18(1), 130. https://doi.org/10.1186/s12889-018-5039-z
   PubMed Web of Science ®Google Scholar
• Tirado, V., Morales Mesa, S. A., Kinsman, J., Ekström, A. M., & Restrepo Jaramillo, B. N. (2020). Women’s reluctance for pregnancy: Experiences and perceptions of Zika virus in Medellin, Colombia. International Journal of Gynecology & Obstetrics, 148(Suppl. 2), 36–44. https://doi.org/10.1002/ijgo.13046
   PubMedGoogle Scholar
• Wheeler, A. C. (2018). Development of infants with Congenital Zika Syndrome: What do we know and what can we expect? Pediatrics, 141(Suppl. 2), S154–S160. https://doi.org/10.1542/peds.2017-2038D
   PubMedGoogle Scholar