<?xml version="1.0" encoding="ISO-8859-1"?><article xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:xlink="http://www.w3.org/1999/xlink" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance">
<front>
<journal-meta>
<journal-id>0124-0064</journal-id>
<journal-title><![CDATA[Revista de Salud Pública]]></journal-title>
<abbrev-journal-title><![CDATA[Rev. salud pública]]></abbrev-journal-title>
<issn>0124-0064</issn>
<publisher>
<publisher-name><![CDATA[Instituto de Salud Publica, Facultad de Medicina - Universidad Nacional de Colombia]]></publisher-name>
</publisher>
</journal-meta>
<article-meta>
<article-id>S0124-00642023000300011</article-id>
<article-id pub-id-type="doi">10.15446/rsap.v25n3.107641</article-id>
<title-group>
<article-title xml:lang="es"><![CDATA[Barreras en la atención de la salud en niños con defectos congénitos atendidos mediante el programa AIVA]]></article-title>
<article-title xml:lang="en"><![CDATA[Identification of barriers in medical care service for children eith congenital defects detected in the AIVA program]]></article-title>
</title-group>
<contrib-group>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Ibáñez-Morantes]]></surname>
<given-names><![CDATA[Alba]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Sarmiento-Acuña]]></surname>
<given-names><![CDATA[Karen]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Suárez-Obando]]></surname>
<given-names><![CDATA[Fernando]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Zarante]]></surname>
<given-names><![CDATA[Ignacio]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
</contrib-group>
<aff id="Af1">
<institution><![CDATA[,Pontificia Universidad Javeriana Facultad de Medicina Instituto de Genética Humana]]></institution>
<addr-line><![CDATA[Bogotá ]]></addr-line>
<country>Colombia</country>
</aff>
<aff id="Af2">
<institution><![CDATA[,Pontificia Universidad Javeriana Facultad de Medicina Departamento de Ciencias Fisiológicas]]></institution>
<addr-line><![CDATA[Bogotá ]]></addr-line>
<country>Colombia</country>
</aff>
<aff id="Af3">
<institution><![CDATA[,Pontificia Universidad Javeriana Facultad de Medicina Instituto de Genética Humana]]></institution>
<addr-line><![CDATA[Bogotá ]]></addr-line>
<country>Colombia</country>
</aff>
<aff id="Af4">
<institution><![CDATA[,Pontificia Universidad Javeriana Facultad de Medicina Hospital Universitario San Ignacio]]></institution>
<addr-line><![CDATA[Bogotá ]]></addr-line>
<country>Colombia</country>
</aff>
<pub-date pub-type="pub">
<day>00</day>
<month>06</month>
<year>2023</year>
</pub-date>
<pub-date pub-type="epub">
<day>00</day>
<month>06</month>
<year>2023</year>
</pub-date>
<volume>25</volume>
<numero>3</numero>
<copyright-statement/>
<copyright-year/>
<self-uri xlink:href="http://www.scielo.org.co/scielo.php?script=sci_arttext&amp;pid=S0124-00642023000300011&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://www.scielo.org.co/scielo.php?script=sci_abstract&amp;pid=S0124-00642023000300011&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://www.scielo.org.co/scielo.php?script=sci_pdf&amp;pid=S0124-00642023000300011&amp;lng=en&amp;nrm=iso"></self-uri><abstract abstract-type="short" xml:lang="es"><p><![CDATA[RESUMEN  Objetivo Identificar las barreras en la atención de la salud en pacientes con defectos congénitos (DC) visuales y auditivos atendidos mediante el Programa de Atención Integral a Familias con Enfermedades Huérfanas con Compromiso Visual y/o Auditivo (AIVA), en Bogotá D. C., Colombia.  Materiales y Métodos Estudio transversal realizado en 58 niños con diagnóstico de DC con posible compromiso visual o auditivo. La población de estudio se seleccionó de la base de datos del programa AIVA, y para la obtención de los datos se les solicitó a los padres o representantes legales llevar a los niños a una valoración médica inicial y responder una entrevista. Las barreras se clasificaron según el modelo de cobertura efectiva de Tanahashi y los datos se analizaron mediante estadística descriptiva; se calcularon frecuencias absolutas y relativas para las variables cualitativas, y medias y desviaciones estándar o medianas y rangos intercuartílicos (según la distribución de los datos determinada con la prueba Shapiro-Wilk) para las cuantitativas.  Resultados El 81,03% de los padres o representantes legales manifestaron al menos una barrera, siendo las más frecuentes las de disponibilidad (49,38%), seguidas de las de accesibilidad (32,24%), aceptabilidad (11,83%) y contacto (6,53%).  Conclusión La mayoría de los padres o representantes legales entrevistados reportaron barreras de acceso a los servicios de salud. Dado que estas repercuten de forma negativa en la salud de los niños con DC, se requieren intervenciones conjuntas para reducirlas y así garantizar mejores condiciones de salud en los niños con DC y compromiso auditivo o visual.]]></p></abstract>
<abstract abstract-type="short" xml:lang="en"><p><![CDATA[ABSTRACT  Objective To identify the barriers in health care in patients with visual and auditory congenital defects (CD) treated through the Comprehensive Care Program for Families with Orphan Diseases with Visual and/or Auditory Compromise (AIVA), in Bogotá D. C., Colombia.  Materials and Methods Cross-sectional study carried out in 58 children diagnosed with CD with possible visual or auditory compromise. The study population was selected from the AIVA program database, and to obtain the data, parents or legal representatives were asked to take the children for an initial medical evaluation and answer an interview. The barriers were classified according to Tanahashi's effective coverage model and the data were analyzed using descriptive statistics; absolute and relative frequencies were calculated for the qualitative variables, and means and standard deviations or medians and interquartile ranges (according to the distribution of the data determined with the Shapiro-Wilk test) for the quantitative variables.  Results 81.03% of parents or legal representatives expressed at least one barrier, the most frequent being availability (49.38%), followed by accessibility (32.24%), acceptability (11.83%) and contact (6.53%).  Conclusion The majority of parents or legal representatives interviewed reported barriers to accessing health services. Given that these have a negative impact on the health of children with CI, joint interventions are required to reduce them and thus guarantee better health conditions in children with CI and auditory or visual impairment.]]></p></abstract>
<kwd-group>
<kwd lng="es"><![CDATA[Accesibilidad a los servicios de salud]]></kwd>
<kwd lng="es"><![CDATA[niños con discapacidad]]></kwd>
<kwd lng="es"><![CDATA[trastornos de la visión]]></kwd>
<kwd lng="es"><![CDATA[pérdida auditiva]]></kwd>
<kwd lng="es"><![CDATA[anomalías congénitas (fuente: DeCS, BIREME)]]></kwd>
<kwd lng="en"><![CDATA[Access to health services]]></kwd>
<kwd lng="en"><![CDATA[quality of life disabled children]]></kwd>
<kwd lng="en"><![CDATA[loss of vision]]></kwd>
<kwd lng="en"><![CDATA[hearing loss]]></kwd>
<kwd lng="en"><![CDATA[congenital abnormalities (source: MeSH, NLM)]]></kwd>
</kwd-group>
</article-meta>
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