Parental needs in the care for children with Zika virus-induced microcephaly
DOI:
https://doi.org/10.5020/18061230.2017.6629Keywords:
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.Downloads
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
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