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1.
Nurs Educ Perspect ; 2023 Mar 04.
Artículo en Inglés | MEDLINE | ID: mdl-36877737

RESUMEN

ABSTRACT: Nurse educators must weave discussions of systemic racism, social justice, social determinants of health, and psychosocial influences throughout the curriculum. For an online pediatric course, an activity was developed to raise awareness of implicit bias. This experience interfused assigned readings from the literature, introspection of identity, and guided discussion. Framed by principles of transformative learning, faculty facilitated an online dialogue involving groups of 5 to 10 students through aggregated self-descriptors and open prompts. Ground rules for the discussion established psychological safety. This activity complements other schoolwide racial justice initiatives.

2.
Am J Med Genet A ; 182(6): 1364-1377, 2020 06.
Artículo en Inglés | MEDLINE | ID: mdl-32293788

RESUMEN

Classic Menkes disease is a rare X-linked recessive disorder of copper metabolism caused by pathogenic variants in the copper transporter gene, ATP7A. Untreated affected individuals suffer failure to thrive and neurodevelopmental delays that begin at 6-8 weeks of age and progress inexorably to death, often within 3 years. Subcutaneous injections of Copper Histidinate (US Food and Drug Administration IND #34,166, Orphan product designation #12-3663) are associated with improved survival and neurological outcomes, especially when commenced within a month of birth. We previously identified internal jugular vein phlebectasia (IJP) in four Menkes disease subjects. This feature and other connective tissue abnormalities appear to be consequences of deficient activity of lysyl oxidase, a copper-dependent enzyme. Here, we report results from a prospective study of IJP based on 178 neck ultrasounds in 66 Menkes subjects obtained between November 2007 and March 2018. Nine patients met the criterion for IJP (one or more cross-sectional area measurements exceeding 2.2 cm2 ) and five subjects had clinically apparent neck masses that enlarged over time. Our prospective results suggest that IJP occurs in approximately 14% (9/66) of Menkes disease patients and appears to be clinically benign with no specific medical or surgical actionability. We surveyed the medical literature for prior reports of IJP in pediatric subjects and identified 85 individuals and reviewed the distribution of this abnormality by gender, sidedness, and underlying etiology. Taken together, Menkes disease accounts for 16% (15/94) of all reported IJP individuals. Neck masses from IJP represent underappreciated abnormalities in Menkes disease.


Asunto(s)
ATPasas Transportadoras de Cobre/genética , Insuficiencia de Crecimiento/genética , Predisposición Genética a la Enfermedad , Trastornos del Neurodesarrollo/genética , Adolescente , Niño , Preescolar , Insuficiencia de Crecimiento/complicaciones , Insuficiencia de Crecimiento/patología , Femenino , Humanos , Lactante , Venas Yugulares/diagnóstico por imagen , Venas Yugulares/patología , Masculino , Síndrome del Pelo Ensortijado , Mutación/genética , Trastornos del Neurodesarrollo/complicaciones , Trastornos del Neurodesarrollo/patología , Ultrasonografía
3.
Pediatr Nurs ; 42(6): 267-74, 2016.
Artículo en Inglés | MEDLINE | ID: mdl-29406650

RESUMEN

Vaccinations are often associated with anxiety, avoidance, and considerable distress for children and parents. These issues can also impair coping during future health care visits. Parents, children, and clinicians can benefit from strategies designed to enhance coping. However, an important barrier to implementation of coping strategy interventions is lack of knowledge among both parents and staff. We produced two sets of tailored handouts designed to enhance education for primary care staff and parents using 41 clinical guidelines, reviews, and randomized controlled trials. Articles were selected from vaccine-specific literature by relevance and practicality for primary care. Handouts provide suggestions for parent and staff interventions before, during, and after vaccinations, focusing on techniques that are effective, cost-efficient, and adaptable. For children of all ages, tailored adult vocabulary and tone can also support coping.


Asunto(s)
Adaptación Psicológica , Práctica Clínica Basada en la Evidencia/educación , Práctica Clínica Basada en la Evidencia/normas , Personal de Enfermería/educación , Padres/educación , Estrés Psicológico/prevención & control , Vacunación/psicología , Adolescente , Niño , Preescolar , Educación Continua en Enfermería , Femenino , Humanos , Lactante , Masculino , Guías de Práctica Clínica como Asunto
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