Parents' understanding about newborn screening
DOI:
https://doi.org/10.7322/jhgd.19810Keywords:
Guthrie test, Newborn screening, Pediatric psychology, PreventionAbstract
Newborn screening, known mainly as PKU and CH screening or Guthrie test, is a public health strategy which aims at the prevention of mental sequels provoked by congenital hypothyroidism and phenylketonuria. These diseases do not usually cause symptoms during the first months of the child's life. However, if they are diagnosed precociously, there is a high probability that the treatment prevents its serious consequences. The test is performed in infants during their first 30 days of life, and their primary caregivers play a crucial role so that prevention occurs. The objective of this work was to study the characteristics of the people being assisted by a service of excellence in Newborn Screening located in the city of Belém, state of Pará, and to evaluate the understanding of parents and/or caregivers about the importance of the Guthrie Test. A questionnaire was applied to 200 participants, who had previously agreed to answer an interview script, and it was verified whether they returned to check the result of the test. The results indicated that most of the participants were not aware of the importance of the test as a resource to promote prevention in child's health.References
Ministério da Saúde. Manual de normas técnicas e rotinas operacionais do programa de triagem neonatal. Brasília (DF); 2002.
Giusti MMC. A iniciativa pioneira da APAE em São Paulo. In: Medeiros Neto G, organizador. Hipotireoidismo congênito no Brasil: como era, como estamos, para onde vamos. São Paulo: Instituto da Tireóide; 2004.p. 31-6.
Carvalho TM. Programa nacional de triagem neonatal: um novo enfoque como programa de saúde pública. In: Medeiros Neto G, organizador. Hipotireoidismo congênito no Brasil: como era, como estamos, para onde vamos. São Paulo, SP: Instituto da Tireóide;2004. p. 15-23.
Ministério da Saúde do Brasil. Portaria Ministerial no 822, de 06 de junho de 2001. Institui, no âmbito do Sistema Único de Saúde, o Programa Nacional de Triagem Neonatal – PNTN. [acesso em 6 mar 2004].Disponível em: http://dtr2001.saude.gov.br/sas/PORTARIAS/Port2001/GM/GM-822.htm.
Setian N. Hipotireoidismo congênito. In: Setian N, editor. Endocrinologia pediátrica: aspectos físicos e metabólicos do recém-nascido ao adolescente. 2a ed. São Paulo: Sarvier; 2002. p. 259-68.
Johnson SB, Milstein SG. Prevention opportunities in health care settings. Am Psychol. 2003;58(67):475-81.
Guimarães SS. Psicologia da saúde e doenças crônicas. In: Kerbauy RR, organizador. Comportamento e saúde: explorando alternativas. Santo André: ArtBytes; 1999. p. 22-45.
Witter GP. Produção científica sobre estresse e prevenção. In: Witter GP, organizador. Psicologia: tópicos gerais. Campinas: Alínea; 2002. p. 239-55.
Casseb MS. Prevenção em diabetes: efeito do treino de auto monitoração na redução de fatores de risco [projeto de qualificação de mestrado - Programa de Pós-Graduação em Teoria e Pesquisa do Comportamento]. Belém: Universidade Federal do Pará; 2004.
Wallack L, Winkleby M. Primary prevention: a new look at basic concepts. Soc Sci Med.1987;25(8):923-30.
Berlinguer G. Bioética da prevenção. Bioética.1994;2(2):117-22.
Abreu-Rodrigues J, Sanabio-Heck ET. Instruções e auto-instruções: contribuições da pesquisa básica. In: Abreu CN, Guilhardi HJ, organizadores. Terapia comportamental e cognitivo-comportamental. São Paulo: Roca;2005. p. 152-68.
Albuquerque LC. Definições de regras. In: Guilhardi HJ, organizador. Sobre comportamento e cognição. Santo André: ESETec; 2001. p. 132-40.
Ayres M, Ayres Jr M, Ayres DL, Santos AS. Bio Estat 3.0: aplicações estatísticas nas áreas das ciências biológicas e médicas. Belém: Sociedade Civil Mamirauá; Brasília: CNPq;2003.
Downloads
Published
Issue
Section
License
CODE OF CONDUCT FOR JOURNAL PUBLISHERS
Publishers who are Committee on Publication Ethics members and who support COPE membership for journal editors should:
- Follow this code, and encourage the editors they work with to follow the COPE Code of Conduct for Journal Edi- tors (http://publicationethics.org/files/u2/New_Code.pdf)
- Ensure the editors and journals they work with are aware of what their membership of COPE provides and en- tails
- Provide reasonable practical support to editors so that they can follow the COPE Code of Conduct for Journal Editors (http://publicationethics.org/files/u2/New_Code.pdf_)
Publishers should:
- Define the relationship between publisher, editor and other parties in a contract
- Respect privacy (for example, for research participants, for authors, for peer reviewers)
- Protect intellectual property and copyright
- Foster editorial independence
Publishers should work with journal editors to:
- Set journal policies appropriately and aim to meet those policies, particularly with respect to:
– Editorial independence
– Research ethics, including confidentiality, consent, and the special requirements for human and animal research
– Authorship
– Transparency and integrity (for example, conflicts of interest, research funding, reporting standards
– Peer review and the role of the editorial team beyond that of the journal editor
– Appeals and complaints
- Communicate journal policies (for example, to authors, readers, peer reviewers)
- Review journal policies periodically, particularly with respect to new recommendations from the COPE
- Code of Conduct for Editors and the COPE Best Practice Guidelines
- Maintain the integrity of the academic record
- Assist the parties (for example, institutions, grant funders, governing bodies) responsible for the investigation of suspected research and publication misconduct and, where possible, facilitate in the resolution of these cases
- Publish corrections, clarifications, and retractions
- Publish content on a timely basis