Parental needs in the care for children with Zika virus-induced microcephaly

Authors

  • Fabiane Elpidio de Sá Universidade Federal do Ceará
  • Micheline Maria Girão de Andrade Universidade Federal do Ceará
  • Eve Mariana Coelho Nogueira Universidade de Fortaleza
  • Jovanka Soares Monteiro Lopes Universidade de Fortaleza
  • Antônia Paula Érika Pinheiro Silva Universidade de Fortaleza
  • Amanda Maria Veras de Assis Centro Universitário Christus

DOI:

https://doi.org/10.5020/18061230.2017.6629

Keywords:

Developmental Disabilities, Parents, Microcephaly, Zika Virus.

Abstract

Objective: To identify parental needs with respect to the care for the development of infants and children with microcephaly caused by the Zika virus (ZIKV). Methods: Qualitative research conducted at a treatment and early stimulation center of the Federal University of Ceará, in Fortaleza, Brazil, in July 2016. A total of 23 guardians, either parents or relatives, of children diagnosed with Zika-induced microcephaly took part in the study, having their data collected by means of focus groups and analyzed through content analysis. Results: The participants reported the need for greater attention, understanding and psychosocial support from the institution and professionals involved; for more knowledge of the general context of the child’s condition; and health education interventions with continuous follow-up focused on the real needs of the children and their families. Conclusion: The results evidenced the absence of and the urgent need for the development and implementation of health-related strategies and actions that favor the active and humanized listening of families, reduce the negative impact caused by the children’s situation within the families and enable a greater and better development of infants and children with Zika virus-induced microcephaly.

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Author Biographies

Fabiane Elpidio de Sá, Universidade Federal do Ceará

Fisioterapeuta. Doutora em educação. Docente do Curso de Fisioterapia da Universidade Federal do Ceará (UFC). Coordenadora do Centro de Estudos do Núcleo de Tratamento e Estimulação Precoce (NUTEP)

Micheline Maria Girão de Andrade, Universidade Federal do Ceará

Graduanda do Curso de Fisioterapia (UFC). Extensionista do Programa de Intervenção Precoce no Desenvolvimento na Primeira Infância - Núcleo de Tratamento e Estimulação Precoce (NUTEP)

Eve Mariana Coelho Nogueira, Universidade de Fortaleza

Psicóloga do Núcleo de Tratamento e Estimulação Precoce (NUTEP)

Jovanka Soares Monteiro Lopes, Universidade de Fortaleza

Fonoaudióloga. Especialista em Desenvolvimento Infantil pela Universidade Federal do Ceará (UFC). Supervisora do Setor de Fonoaudiologia do Núcleo de Tratamento e Estimulação Precoce (NUTEP)

Antônia Paula Érika Pinheiro Silva, Universidade de Fortaleza

Terapeuta Ocupacional do Núcleo de Tratamento e Estimulação Precoce (NUTEP)

Amanda Maria Veras de Assis, Centro Universitário Christus

Fisioterapeuta. Especialista em Neonatologia e Pediatria pela Faculdade Farias Brito (FFB). Fisioterapeuta do Núcleo de Tratamento e Estimulação Precoce (NUTEP)

References

Ministério da Saúde (BR), Secretaria de Vigilância em Saúde. Vírus Zika no Brasil: a resposta do SUS [Internet]. Brasília: Ministério da Saúde; 2017 [acesso em 2017 Set 4]. Disponível em: http://bvsms.saude.gov.br/bvs/publicacoes/virus_zika_ brasil_resposta_sus.pdf

Oliveira Melo AS, Malinger G, Ximenes R, Szejnfeld PO, Alves Sampaio S, Bispo de Filippis AM. Zika virus intrauterine infection causes fetal brain abnormality and microcephaly: tip of the iceberg? Ultrasound Obstet Gynecol. 2016;47(1):6-7.

Hussain HF, Hafiz MY, Hussain SA. Rumor has it; the truth behind Zika virus. J Infect Public Health. 2017;10(1):135-6.

Pan American Health Organization, World Health Organization. Zika suspected and confirmed cases reported by countries and territories in the Americas Cumulative cases, 2015-2017. Washington: PAHO/WHO; 2017 [acesso em 2017 Set 4].Disponível em:http://www2.paho.org/hq/index.php?option=com_docman&task=doc_view&Itemid=270&gid=38901&lang=en

Brito C. Zika Virus: a new chapter in the history of medicine. Acta Med Port. 2016 28(6):679-80.

Butler D. Zika and birth defects: what we know and what we don’t. Nature. 2016 Mar [acesso em 2017 Set 4]. Disponível em: http://www.nature.com/doifinder/10.1038/nature.2016.19596

Cui L, Zou P, Chen E, Yao H, Zheng H, Wang Q, et al. Visual and motor deficits in grown-up mice with congenital zika virus infection. EbioMedicine [Internet]. 2017 [acesso em 2017 Set 4];20:193-201. Disponível em: http://www-sciencedirectcom. ez11.periodicos.capes.gov.br/science/article/pii/S2352396417301846

Freitas BP, Ko AI, Khouri R, Mayoral M, Henriques DF, Maia M, et al. Glaucoma and congenital Zika Syndrome. Ophthalmology [Internet]. 2017 [acesso em 2017 Set 4];124(3):407–8. Disponível em: http://linkinghub.elsevier.com/ retrieve/pii/S0161642016310557

Hazin AN, Poretti A, Cruz DCS, Tenorio M, Van der Linden A, Pena LJ, et al. Computed tomographic findings in microcephaly associated with Zika Virus. N Engl J Med [Internet]. 2016 [acesso em 2017 Set 4];374:2193-5. Disponível em: http://www.nejm.org/doi/10.1056/NEJMc1603617

Microcephaly Epidemic Research Group. Microcephaly in infants, Pernambuco State, Brazil, 2015. Emerg Infect Dis [Internet]. 2016 [acesso em 2017 Set 4];22(6):1090–3. Disponível em: http://wwwnc.cdc.gov/eid/article/22/6/16-0062_article.htm

Cordeiro MT, Pena LJ, Brito CA, Gil LH, Marques ET. Positive IgM for Zika virus in the cerebrospinal fluid of 30 neonates with microcephaly in Brazil. Lancet [Internet]. 2016 [acesso em 2017 Set 4];387(10030):1811-2. Disponível em: http://linkinghub.elsevier.com/retrieve/pii/S0140673616302537

Cofré F. Infección intrauterina por virus Zika y microcefalia. Rev Chil Infectol. 2016;33(1):96.

Chan JFW, Choi GKY, Yip CCY, Cheng VCC, Yuen K-Y. Zika fever and congenital Zika syndrome: an unexpected emerging arboviral disease. J Infect [Internet]. 2016 [acesso em 2017 Set 4];72(5):507-24. Disponível em: http://linkinghub.elsevier. com/retrieve/pii/S016344531600061X

Baud D, Gubler DJ, Schaub B, Lanteri MC, Musso D. An update on Zika virus infection. Lancet [Internet]. 2017 [acesso em 2017 Set 4]. Disponível em: http://linkinghub.elsevier.com/retrieve/pii/S0140673617314502

World Health Organization. The WHO child growth standards [Internet]. Geneva: WHO; 2016 [acesso em 2017 Set 4]. Disponível em: www.who.int/childgrowth/en/

Kapogiannis BG, Chakhtoura N, Hazra R, Spong CY. Bridging knowledge gaps to understand how zika virus exposure and infection affect child development. JAMA Pediatr [Internet]. 2017[acesso em 2017 Set 4];171(5):478. Disponível em: http://archpedi.jamanetwork.com/article.aspx?doi=10.1001/jamapediatrics.2017.0002

Jansen SLG, van der Putten AAJ, Vlaskamp C. What parents find important in the support of a child with profound intellectual and multiple disabilities. Child Care Health Dev [Internet]. 2013 [acesso em 2017 Set 4];39(3):432–41. Disponível em: http://doi.wiley.com/10.1111/j.1365-2214.2012.01381.x

Ministério da Saúde (BR), Secretaria de Vigilância em Saúde. Monitoramento integrado de alterações no crescimento e desenvolvimento relacionadas à infecção pelo vírus Zika e outras etiologias infecciosas, até a Semana Epidemiológica 20/2017. Boletim Epidemiol. 2017;48(19):1-9.

Feijó MR. Gestação e zika: muita coisa para uma mãe só. Fórum: Suplemento do Jornal Unesp [Internet]. 2016 Abr, p. 3 [acesso em 2017 Jul 20]. Disponível em: https://repositorio.unesp.br/bitstream/handle/11449/138718/JU320. pdf?sequence=1

O’Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research Acad Med [Internet]. 2014 [acesso em 2017 Set 4];89(9):1245–51. Disponível em: http://journals.lww.com/academicmedicine/Fulltext/2014/09000/Standards_for_Reporting_Qualitative_Research___A.21.aspx

Rede EQUATOR: Melhorando a qualidade e a transparência da pesquisa em saúde [acesso em 2017 Set 4]. Disponível em: http://www.equator-network.org

Núcleo de Tratamento e Estimulação Precoce. Quem Somos [acesso em 2017 Set 4]. Disponível em: http://www.nutep.org. br/portal/sobre-nos/quem-somos/.

Krueger RA, Casey MA. Focus groups: a practical guide for applied research. 5th ed. Los Angeles: SAGE; 2015.

Silva DLS, Knobloch F. A equipe enquanto lugar de formação: a educação permanente em um Centro de Atenção Psicossocial Álcool e outras drogas. Interface Comun Saúde Educ [Internet]. 2016 [acesso em 2017 Set 4];20(57):325-35. Disponível em: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1414 32832016000200325&lng=pt&tlng=pt

Stewart DW, Shamdasani PN. Focus groups: theory and practice. 3rd ed. Los Angeles: SAGE; 2014.

Araujo NB, Mandú ENT. Production of meanings among adolescents about self care during the pregnancy/ Produção de sentidos entre adolescentes sobre o cuidado de si na gravidez. Interface Comun Saúde Educ. 2016;20(57):363-75.

Bardin L. L’analyse de contenu. 2e éd. Paris: Presses Universitaires de France; 2013.

Huang YP, Chang MY, Chi YL, Lai FC. Health-related quality of life in fathers of children with or without developmental disability: the mediating effect of parental stress. Qual Life Res. 2014;23(1):175–83.

Czupryna K, Nowotny-Czupryna O, Nowotny J. Back pain in mothers of cerebral palsied children. Ortop Traumatol Rehabil [Internet]. 2014 [acesso em 2017 Set 4];16(5):497–505. Disponível em: http://899.indexcopernicus.com/abstracted. php?level=5&ICID=1128840

Russell K, Oliver SE, Lewis L, Barfield WD, Cragan J, Meaney-Delman D, et al. Update: interim guidance for the evaluation and management of infants with possible congenital zika virus infection. MMWR Morb Mortal Wkly Rep [Internet]. 2016 [acesso em 2017 Set 4];65(33):870–8. Disponível em: http://www.cdc.gov/mmwr/volumes/65/wr/mm6533e2.htm

World Health Organization. Risk communication in the context of Zika virus [Internet]. Geneva: WHO; 2016 [acesso em 2017 Jul 3]. Disponível em: http://www.who.int/csr/resources/publications/zika/risk-communication/en/

Pan American Health Organization, World Health Organization. Zika virus infection: step by step guide on Risk Communication and Community Engagement. [Internet]. Geneva: WHO; 2017 [acesso em 2017 Jul 3]. Disponível em: http://iris.paho.org/xmlui/handle/123456789/33670

Pan American Health Organization, World Health Organization. Risk communication in the age of Zika virus [Internet].Geneva: WHO; 2016 [acesso em 2017 Jul 3]. Disponível em: http://www.paho.org/hq/index.php?option=com_docman&task=doc_view&Itemid=270&gid=38456&lang=en

Baker DE. Zika Virus and the Media. Hosp Pharm [Internet]. 2016 [acesso em 2017 Jul 3];51(4):275–6. Disponível em: http://archive.hospital-pharmacy.com/doi/10.1310/hpj5104-275.

Vonneilich N, Lüdecke D, Kofahl C. The impact of care on family and health-related quality of life of parents with chronically ill and disabled children. Disabil Rehabil. 2016;38(8):761–7.

Miner JJ. Congenital Zika virus infection: More than just microcephaly. Sci Transl Med. 2017;9(393):eaan8195.

Ministério da Saúde (BR), Secretaria de Atenção à Saúde. Protocolo de atenção à saúde e resposta à ocorrência de microcefalia: versão 3. Brasília: Ministério da Saúde; 2016 [acesso em 2017 Jul 3]. Disponível em: http://combateaedes. saude.gov.br/pt/profissional-e-gestor/orientacoes/140-diretrizes-de-estimulacao-precoce-criancas-de-zero-a-3-anos-comatraso-no-desenvolvimento-neuropsicomotor-decorrente-de-microcefalia

Vuorenmaa M, Perälä ML, Halme N, Kaunonen M, Åstedt-Kurki P. Associations between family characteristics and parental empowerment in the family, family service situations and the family service system. Child Care Health Dev.2016;42(1):25–35.

Vuorenmaa M, Halme N, Perälä M-L, Kaunonen M, Åstedt-Kurki P. Perceived influence, decision-making and access to information in family services as factors of parental empowerment: a cross-sectional study of parents with young children. Scand J Caring Sci. 2016;30(2):290-302.

Brunoni D, Blascovi-Assis SM, Osório AAC, Seabra AG, Amato CAH, Teixeira MCTV, et al. Microcefalia e outras manifestações relacionadas ao vírus Zika: impacto nas crianças, nas famílias e nas equipes de saúde. Ciênc Saúde Coletiva. 2016;21(10):3297-302.

Lam W, Dawson A, Fowler C. Approaches to better engage parent–child in health home-visiting programmes. J Child Heal Care. 2017;21(1):94–102.

Centers for Disease Control and Prevention (US). Birth defects: facts about microcephaly [acesso em 2017 Jun 7]. Disponível em: http://www.cdc.gov/ncbddd/birthdefects/microcephaly.html

Centers for Disease Control and Prevention (US). Follow-Up Care: Zika Virus [acesso em 2017 Jun 7]. Disponível em: https://www.cdc.gov/zika/hc-providers/infants-children/follow-up-care.html.

Garip Y, Ozel S, Tuncer OB, Kilinc G, Seckin F, Arasil T. Fatigue in the mothers of children with cerebral palsy. Disabil Rehabil. 2017;39(8):757-62.

Agrawal H, Wright OK, Carberry KE, Sexson Tejtel SK, Mery CM, Molossi S. Family perception of unmet support needs following a diagnosis of congenital coronary anomaly in children: results of a survey. Congenit Heart Dis [Internet]. 2017 [acesso em 2017 Jul 3]:1-5. Disponível em: http://doi.wiley.com/10.1111/chd.12473

Ansari NJR, Dhongade RK, Lad PS, Borade A, Yg S, Yadav V, et al. Study of parental perceptions on health & social needs of children with neuro-developmental disability and it’s impact on the family. J Clin Diagn Res. 2016;10(12):SC16-20.

Santos AB, Fonseca L. A relação subjetiva de mães de crianças com deficiência [monografia]. Salvador: Escola Bahiana de Medicina e Saúde Pública; 2016 [acesso em 2017 Jul 3]. Disponível em: http://www.repositorio.bahiana.edu.br/jspui/handle/bahiana/324

Pelentsov L, Fielder A, Laws T, Esterman A. Development of the parental needs scale for rare diseases: a tool for measuring the supportive care needs of parents caring for a child with a rare disease. J Multidiscip Healthc [Internet]. 2016 [acesso em 2017 Jul 3];9:425–33. Disponível em: http://www.ncbi.nlm.nih.gov/pubmed/27672327

Published

2017-12-06

How to Cite

de Sá, F. E., Andrade, M. M. G. de, Nogueira, E. M. C., Lopes, J. S. M., Silva, A. P. Érika P., & Veras de Assis, A. M. (2017). Parental needs in the care for children with Zika virus-induced microcephaly. Brazilian Journal in Health Promotion, 30(4). https://doi.org/10.5020/18061230.2017.6629

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Section

Original Articles