Perceptions and Emotional State of Mothers of Children with and without Microcephaly after the Zika Virus Epidemic in Rural Caribbean Colombia
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design
2.2. Study Participants
2.3. Methods Used
2.4. Analysis
2.5. Ethical Issues
2.6. Baseline Characteristics of Study Participants
3. Results
3.1. Maternal Health of Mothers with Normocephalic vs. Microcephalic Children
3.2. Perceptions of Women Exposed to ZIKV during Pregnancy
3.3. Feelings
3.4. Support
3.5. Sources of Information
3.6. Consequences on Children’s Health
4. Discussion
5. Conclusions
Author Contributions
Funding
Acknowledgments
Conflicts of Interest
References
- Charlier, C.; Beaudoin, M.C.; Couderc, T.; Lortholary, O.; Lecuit, M. Arboviruses and pregnancy: Maternal, fetal, and neonatal effects. Lancet Child Adolescent Health 2017, 1, 134–146. [Google Scholar] [CrossRef]
- Albuquerque, M.D.F.P.M.D.; Souza, W.V.D.; Araújo, T.V.B.; Braga, M.C.; Miranda Filho, D.D.B.; Ximenes, R.A.D.A.; de Melo Filho, D.A.; Brito, C.A.A.D.; Valongueiro, S.; Melo, A.P.L.D.; et al. The microcephaly epidemic and Zika virus: Building knowledge in epidemiology. Epidemia de microcefalia e vírus Zika: A construção do conhecimento em epidemiologia. Cad. Saude Publica 2018, 34, e00069018. [Google Scholar] [CrossRef] [PubMed]
- Goncé, A.; Martínez, M.J.; Marbán-Castro, E.; Saco, A.; Soler, A.; Alvarez-Mora, M.I.; Peiro, A.; Gonzalo, V.; Hale, G.; Bhatnagar, J.; et al. Spontaneous Abortion Associated with Zika Virus Infection and Persistent Viremia. Emerg. Infect. Dis. 2018, 24, 933–935. [Google Scholar] [CrossRef] [PubMed]
- Shapiro-Mendoza, C.K.; Rice, M.E.; Galang, R.R.; Fulton, A.C.; VanMaldeghem, K.; Prado, M.V.; Ellis, E.; Anesi, M.S.; Simeone, R.M.; Petersen, E.E.; et al. Zika Pregnancy and Infant Registries Working Group. Pregnancy Outcomes After Maternal Zika Virus Infection During Pregnancy—U.S. Territories, January 1, 2016–April 25, 2017. MMWR. Morb. Mortal. Wkly. Rep. 2017, 66, 615–621. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- van der Eijk, A.A.; van Genderen, P.J.; Verdijk, R.M.; Reusken, C.B.; Mögling, R.; van Kampen, J.J.; Widagdo, W.; Aron, G.I.; GeurtsvanKessel, C.H.; Pas, S.D.; et al. Miscarriage Associated with Zika Virus Infection. N. Engl. J. Med. 2016, 375, 1002–1004. [Google Scholar] [CrossRef] [PubMed]
- Musso, D.; Ko, A.I.; Baud, D. Zika Virus Infection—After the Pandemic. N. Engl. J. Med. 2019, 381, 1444–1457. [Google Scholar] [CrossRef]
- Walker, C.L.; Little, M.T.E.; Roby, J.A.; Armistead, B.; Gale, M., Jr.; Rajagopal, L.; Nelson, B.R.; Ehinger, N.; Mason, B.; Nayeri, U.; et al. Zika virus and the nonmicrocephalic fetus: Why we should still worry. Am. J. Obstet. Gynecol. 2019, 220, 45–56. [Google Scholar] [CrossRef]
- Einspieler, C.; Utsch, F.; Brasil, P.; Aizawa, C.Y.P.; Peyton, C.; Hasue, R.H.; Genovesi, F.F.; Damasceno, L.; Moreira, M.E.; Adachi, K.; et al. Zika Working Group. Association of Infants Exposed to Prenatal Zika Virus Infection With Their Clinical, Neurologic, and Developmental Status Evaluated via the General Movement Assessment Tool. JAMA Netw. Open 2019, 2, e187235. [Google Scholar] [CrossRef] [Green Version]
- Faiçal, A.V.; de Oliveira, J.C.; Oliveira, J.V.V.; de Almeida, B.L.; Agra, I.A.; Alcantara, L.C.J.; Acosta, A.X.; de Siqueira, I.C. Neurodevelopmental delay in normocephalic children with in utero exposure to Zika virus. BMJ Paediatr. Open 2019, 3, e000486. [Google Scholar] [CrossRef]
- Nielsen-Saines, K.; Brasil, P.; Kerin, T.; Vasconcelos, Z.; Gabaglia, C.R.; Damasceno, L.; Pone, M.; de Carvalho, L.M.A.; Pone, S.M.; Zin, A.A.; et al. Delayed childhood neurodevelopment and neurosensory alterations in the second year of life in a prospective cohort of ZIKV-exposed children. Nat. Med. 2019, 25, 1213–1217. [Google Scholar] [CrossRef]
- Broussard, C.S.; Shapiro-Mendoza, C.K.; Peacock, G.; Rasmussen, S.A.; Mai, C.T.; Petersen, E.E.; Galang, R.R.; Newsome, K.; Reynolds, M.R.; Gilboa, S.M.; et al. Public Health Approach to Addressing the Needs of Children Affected by Congenital Zika Syndrome. Pediatrics 2018, 141 (Suppl. 2), S146–S153. [Google Scholar] [CrossRef] [Green Version]
- Kotzky, K.; Allen, J.E.; Robinson, L.R.; Satterfield-Nash, A.; Bertolli, J.; Smith, C.; Pereira, I.O.; Faria e Silva Santelli, A.C.; Peacock, G. Depressive Symptoms and Care Demands Among Primary Caregivers of Young Children with Evidence of Congenital Zika Virus Infection in Brazil. J. Dev. Behav. Paediatr. 2019, 40, 344–353. [Google Scholar] [CrossRef] [PubMed]
- Kuper, H.; Moreira, M.E.L.; de Araújo, T.V.B.; Valongueiro, S.; Fernandes, S.; Pinto, M.; Lyra, T.M. 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, e0007768. [Google Scholar] [CrossRef] [PubMed]
- Lee, M.H.; Park, C.; Matthews, A.K.; Hsieh, K. Differences in physical health, and health behaviors between family caregivers of children with and without disabilities. Disabil. Health J. 2017, 10, 565–570. [Google Scholar] [CrossRef] [PubMed]
- Romero-Acosta, K.; Pérez, D.; Argumendos, C. Estudio de la interacción mamá-bebé prematuro a través de la escala Brazelton y algunas implicaciones sobre la salud mental de las Madres. In Ocho Estudios de Salud Mental; Barbosa, J.L., Ed.; CECAR Editorial: Sincelejo, Colombia, 2019. [Google Scholar]
- Acosta, K.R.; Ruiz, F. El trastorno de estrés postraumático en niños preescolares: Una revisión literaria. Katharsis 2015, 20, 145–167. [Google Scholar] [CrossRef] [Green Version]
- Klein, P.S.; Feldman, R. Mothers’ and caregivers’ interactive and teaching behavior with toddlers. Early Child Dev. Care 2007, 177, 383–402. [Google Scholar] [CrossRef]
- Yamaoka, Y.; Tamiya, N.; Izumida, N.; Kawamura, A.; Takahashi, H.; Noguchi, H. The relationship between raising a child with a disability and the mental health of mothers compared to raising a child without disability in japan. SSM-Popul. Health 2016, 2, 542–548. [Google Scholar] [CrossRef] [Green Version]
- Isa, S.N.I.; Ishak, I.; Ab Rahman, A.; Saat, N.Z.M.; Din, N.C.; Lubis, S.H.; Ismail, M.F.M. Health and quality of life among the caregivers of children with disabilities: A review of literature. Asian J. Psychiatry 2016, 23, 71–77. [Google Scholar] [CrossRef]
- Masefield, S.C.; Prady, S.L.; Sheldon, T.A.; Small, N.; Jarvis, S.; Pickett, K.E. The Caregiver Health Effects of Caring for Young Children with Developmental Disabilities: A Meta-analysis. Matern. Child Health J. 2020, 24, 561–574. [Google Scholar] [CrossRef] [Green Version]
- Pilapil, M.; Coletti, D.J.; Rabey, C.; DeLaet, D. Caring for the Caregiver: Supporting Families of Youth With Special Health Care Needs. Curr. Probl. Paediatr. Adolesc. Health Care 2017, 47, 190–199. [Google Scholar] [CrossRef]
- Edelstein, H.; Schippke, J.; Sheffe, S.; Kingsnorth, S. Children with medical complexity: A scoping review of interventions to support caregiver stress. Child: Care, Health Dev. 2017, 43, 323–333. [Google Scholar] [CrossRef] [PubMed]
- Teague, S.J.; Newman, L.K.; Tonge, B.J.; Gray, K.M.; MHYPeDD team. Caregiver Mental Health, Parenting Practices, and Perceptions of Child Attachment in Children with Autism Spectrum Disorder. J. Autism Dev. Disord. 2018, 48, 2642–2652. [Google Scholar] [CrossRef] [PubMed]
- dos Santos Oliveira, S.J.G.; de Melo, E.S.; Reinheimer, D.M.; Gurgel, R.Q.; Santos, V.S.; Martins-Filho, P.R.S. Anxiety, depression, and quality of life in mothers of newborns with microcephaly and presumed congenital Zika virus infection. Arch. Women’s Ment. Health. 2016, 19, 1149–1151. [Google Scholar] [CrossRef] [PubMed]
- Ebuenyi, I.D.; Bhuyan, S.S.; Bain, L.E. Zika Virus infection and microcephaly: Anxiety burden for women. Pan Afr. Med. J. 2018, 30, 2. [Google Scholar] [CrossRef] [PubMed]
- Freire, I.M.; Pone, S.M.; Ribeiro, M.D.C.; Aibe, M.S.; Pone, M.V.D.S.; Moreira, M.E.L.; Dupret, L. Congenital Zika virus syndrome in infants: Repercussions for the promotion of families’ mental health. Síndrome congênita do Zika vírus em lactentes: Repercussões na promoção da saúde mental das famílias. Cad. Saude Publica 2018, 34, e00176217. [Google Scholar] [CrossRef] [Green Version]
- Vale, P.R.L.F.D.; Cerqueira, S.; Santos, H.P., Jr.; Black, B.P.; Carvalho, E.S.D.S. Bad news: Families’ experiences and feelings surrounding the diagnosis of Zika-related microcephaly. Nurs. Inq. 2019, 26, e12274. [Google Scholar] [CrossRef]
- Williams, N.A.; Villachan-Lyra, P.; Marvin, C.; Chaves, E.; Hollist, C.; Hatton-Bowers, H.; Barbosa, L.N.F. Anxiety and depression among caregivers of young children with Congenital Zika Syndrome in Brazil. Disabil. Rehabil. 2019, 1–10. [Google Scholar] [CrossRef]
- Arroyo, K.; Arrieta, G.; Mattar, S.; Romero, K.; Ramirez, A. Exploración Del Neurodesarrollo a niños con y sin Microcefalia afectados por Virus de Zika en Sucre. Rev. Neuropsicol. Neuropsiquiatría Neurocienc. 2018, 18, 74, ISSN: 0124-1. [Google Scholar]
- Romero-Acosta, K. Esbozos sobre el método cualitativo y su aplicación a la investigación en salud mental. Rev. Epistemol. Psicol. Cienc. Soc. 2018, 2, 25–33. [Google Scholar]
- Spielberger, C.D.; Sydeman, S.J.; Owen, A.E.; Marsh, B.J. Measuring anxiety and anger with the State-Trait Anxiety Inventory (STAI) and the State-Trait Anger Expression Inventory (STAXI). In The Use of Psychological Testing for Treatment Planning and Outcomes Assessment; Maruish, M.E., Ed.; Lawrence Erlbaum Associates Publishers: Mahwah, NJ, USA, 1999; pp. 993–1021. [Google Scholar]
- Lezama, M.S.R. Propiedades psicométricas de la escala de Zung para síntomas depresivos en población adolescente escolarizada colombiana. Psychol. Av. Discip. 2012, 6, 91–101. [Google Scholar] [CrossRef]
- Aragonès, B.E.; Masdéu, M.R.M.; Cando, G.G.; Coll, B.G. Validez diagnóstica de la Self-Rating Depression Scale de Zung en pacientes de atención primaria. Actas Españolas de Psiquiatria 2001, 29, 310–316. [Google Scholar]
- Valente, S.M.; Saunders, J. Screening for depression and suicide: Self-report instruments that work. J. Psychosoc. Nurs. Ment. Health Serv. 2005, 43, 22–31. [Google Scholar] [CrossRef]
- Villa, G.I.C.; Zuluaga, A.C.; Restrepo, R.L.F. Propiedades psicométricas del Cuestionario de Salud General de Goldberg GHQ-12 en una institución hospitalaria de la ciudad de Medellín. Avances en Psicología Latinoamericana 2013, 31, 532–545. [Google Scholar]
- Gottfried, A.W. Measures of Socioeconomic Status in Child Development Research: Data and Recommendations. Merrill-Palmer Q. 1985, 31, 85–92. Available online: www.jstor.org/stable/23086136 (accessed on 9 July 2020).
- DeSilva, M.; Munoz, F.M.; Sell, E.; Marshall, H.; Kawai, A.T.; Kachikis, A.; Heath, P.; Klein, N.P.; Oleske, J.M.; Jehan, F.; et al. Congenital microcephaly: Case definition & guidelines for data collection, analysis, and presentation of safety data after maternal immunisation. Vaccine 2017, 35 (48 Pt A), 6472–6482. [Google Scholar] [CrossRef]
- Guo, F.; Norton, A.R.; Fuchs, E.L.; Hirth, J.M.; Garcia-Blanco, M.A.; Berenson, A.B. Provider-patient communication about Zika during prenatal visits. Prev. Med. Rep. 2017, 7, 26–29. [Google Scholar] [CrossRef]
- Pooransingh, S.; Parasram, R.; Nandram, N.; Bhagwandeen, B.; Dialsingh, I. Zika virus disease—knowledge, attitudes and practices among pregnant women—implications for public health practice. Public Health 2018, 165, 146–151. [Google Scholar] [CrossRef]
- Matos, T.D.D.S.; Meneguin, S.; Ferreira, M.D.L.D.S.; Miot, H.A. Quality of life and religious-spiritual coping in palliative cancer care patients. Rev. Lat. Am. Enferm. 2017, 25, e2910. [Google Scholar] [CrossRef]
- Ekas, N.V.; Whitman, T.L.; Shivers, C. Religiosity, spirituality, and socioemotional functioning in mothers of children with autism spectrum disorder. J. Autism Dev. Disord. 2009, 39, 706–719. [Google Scholar] [CrossRef]
Health Area | Category | Average | SD | p-Value |
---|---|---|---|---|
Self-perception of general health | Case | 22.44 | 4.003 | 0.000 |
Control | 41.37 | 4.565 | ||
Depression | Case | 20.89 | 7.322 | 0.392 |
Control | 17.62 | 7.945 | ||
Anxiety | Case | 20.11 | 7.557 | 0.146 |
Control | 13.75 | 9.528 |
Category | Time Points | Minimum | Maximum | Average | SD |
---|---|---|---|---|---|
Self-perception of health | Year 1 | 33 | 44 | 38.75 | 4.573 |
Year 2 | 15 | 27 | 22.75 | 5.315 | |
Depression | Year 1 | 12 | 29 | 17.50 | 7.767 |
Year 2 | 11 | 32 | 17.50 | 9.815 | |
Anxiety | Year 1 | 14 | 25 | 19.25 | 4.573 |
Year 2 | 12 | 31 | 22.50 | 7.853 |
Category | |
---|---|
Code | Quote |
Feelings | |
Loneliness | “I feel alone, and sometimes it makes me make a mess [the house]” |
Blame | “Sometimes, stress is so intense, that I forgot that my other child is six years old, and she needs my affection and love” “He [husband] tells off the girl and demands her more than what he should” |
Patience | “It’s a bit stressful to know that development goes slow and that you previously had a normal child who walked when he was a year of age. But I am patient, and I know that this baby’s achievements are slow, and we applaud his progress” |
Overwhelmed | “I got stressed with medical appointments and with doctors” “I feel a bit overwhelmed for the child, I go with her to psychical therapy, occupational therapy, speech therapist…” |
Sadness | “I take a towel, and scream, and cry alone” |
Gratitude | “I feel happy. My daughter is a strong reason to be in charge. Even, she is not what we were expecting… we are satisfied now for what we have achieved” |
Support | |
Lack of support | “I do not count on my mother-in-law, neither my sister-in-law, I think they step away from me because of the baby [and starts crying]” “My husband works a lot, I do not count on him” |
Partner support | “My partner was fundamental. He told me: ‘He [baby] is normal, do not worry’ ” |
Relatives support | “Sometimes I have time for myself. Sometimes I go out to have my hair or nails done. I count on my mother’s support.” |
Category | |
---|---|
Code | Quote |
Feelings | |
Sadness | “I was feeling very bad, very sad” |
Overwhelmed | “I felt really stressed” |
Sadness | “I did not even want to eat. I did not want anybody to tell me anything, because I was tired of this…” |
Fear | “I was scared” |
Gratitude | “I would be happy anyway, to have my baby girl, because it was my desire, to have my baby. Daddy was so happy; he was going to have his first baby girl” |
Support | |
Spirituality | “I went to church and they prayed for me. They told me ‘Your baby is going to be born healthy, your baby is strong, your baby is not going to have any illness’” “I was sad, but at the same time, I held on God” “I only held on my God, that I did not have Zika” “They told me ‘Well, girl, just be faithful to God, that this didn’t happen to you, just that, there are people hospitalized’ and I wasn’t” |
Partner and relatives support | “I thought of my baby, and when my husband found it out, he told me ‘You are not going to work’. And was looking after me at home. My mother-in-law helped me at home because I had Zika” |
Family support | “They told me to come here [to the Clinic], to tell you [doctors] that I had Zika in order to have more exams performed, my neighbor told me.” |
Sources of information | |
By mass media | “Before pregnancy, you watched on TV that children could come with problems, that the baby comes with problems… What can I tell you? I don’t know the word, I forgot it… Well, more or less I had some idea about Zika. Because I searched […] on the internet to see how one was ill, to see how you feel [with Zika] more or less… The day I had the rash, I searched on the internet to see if it was it [Zika]. But there they said that you had joint pain, but I didn’t have it, just some mosquito bites, but nothing else…” |
By healthcare professionals | “They told me [healthcare professionals] that my baby could be born with problems, that he could be born with Down syndrome” “They told me [a healthcare professional] that he/she could be born with either the head very small or very big” |
By friends | “Well, the first time I heard it from a friend and told me. Because in Brazil… because at that time we did not know, so she told me that some children were born with small heads. She did not tell me the name, just that they were born with small heads due to Zika, a lot of children were born like that. But I told her that we had to wait, he had to wait in name of Jesus Christ” |
Consequences on children’s health | |
Perception of symptoms | “I think that, as I did not have it [Zika] so strong, so deep, that there were some people with fever, diarrhea, and I did not have any of those symptoms. I just had small rash two days and that was all” |
Perception of severity | “Because they said that that [Zika] happened if you were three months pregnant, that if three months or earlier, the baby could be born with problems, but as I had it when I was in my 5th month of pregnancy… Maybe because of that… [the baby is fine]” |
Stigmatization of the disease | “And with Zika… imagine! Going with a deformed baby, that many people said that they were like little monsters. They told me that they were little monsters because they were born just with part of their face” |
© 2020 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
Share and Cite
Romero-Acosta, K.; Marbán-Castro, E.; Arroyo-Alvis, K.; Arrieta, G.; Mattar, S. Perceptions and Emotional State of Mothers of Children with and without Microcephaly after the Zika Virus Epidemic in Rural Caribbean Colombia. Behav. Sci. 2020, 10, 147. https://doi.org/10.3390/bs10100147
Romero-Acosta K, Marbán-Castro E, Arroyo-Alvis K, Arrieta G, Mattar S. Perceptions and Emotional State of Mothers of Children with and without Microcephaly after the Zika Virus Epidemic in Rural Caribbean Colombia. Behavioral Sciences. 2020; 10(10):147. https://doi.org/10.3390/bs10100147
Chicago/Turabian StyleRomero-Acosta, Kelly, Elena Marbán-Castro, Katy Arroyo-Alvis, Germán Arrieta, and Salim Mattar. 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, no. 10: 147. https://doi.org/10.3390/bs10100147
APA StyleRomero-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