1 40 2 Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month Backlog URL Address <a href="http://doi.org/10.1097/PCC.0b013e3181e89c3a" target="_blank" rel="noreferrer">http://doi.org/10.1097/PCC.0b013e3181e89c3a</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Physicians' experiences and perspectives regarding follow-up meetings with parents after a child's death in the pediatric intensive care unit. Publisher An entity responsible for making the resource available Pediatric Critical Care Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2010 Subject The topic of the resource Communication; Critical Care; bereavement; ICU Decision Making; qualitative methods; parent Creator An entity primarily responsible for making the resource Meert K; Eggly S; Berger J; Zimmerman J; Anand KJS; Newth CJ; Harrison R; Carcillo J; Dean JM; Willson DF; Nicholson CE; The Eunice Kennedy Shriver National Institute of Child Health; Human Development Collaborative Pediatric Critical Care Research Network Description An account of the resource Objective: To investigate critical care physicians' experiences and perspectives regarding follow-up meetings with parents after a child's death in the pediatric intensive care unit. Parents of children who die in the pediatric intensive care unit often desire a follow-up meeting with the physicians who cared for their child.Design: Semistructured, audio-recorded telephone interviews.Setting: Six clinical centers affiliated with the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network.Participants: Seventy critical care physicians (i.e., attendings and fellows) practicing or training at a Child Health and Human Development Collaborative Pediatric Critical Care Research Network clinical center between February 1, 2008 and June 30, 2008.Measurements and Main Results: Twenty-three (33%) physicians reported never participating in a follow-up meeting with bereaved parents; 22 (31%) participated in one to five meetings; and 25 (36%) participated in more than five meetings. Of those with prior experience, 44 (94%) met with parents at the hospital and 40 (85%) met within 3 months of the death. Meeting content included discussing autopsy, parent questions, hospital course, cause of death, genetic risk, bereavement services, and legal or administrative issues; providing emotional support; and receiving parent feedback. Forty (85%) physicians perceived the meetings to be beneficial to families, and 35 (74%) to physicians. Barriers included time and scheduling, family and physician unwillingness, distance and transportation, language and cultural issues, parent anger, and lack of a system for meeting initiation and planning.Conclusions: Critical care physicians have a wide range of experience conducting follow-up meetings with bereaved parents. Although physicians perceive benefits to follow-up meetings, barriers exist that interfere with their implementation in clinical practice. 2010-06 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1097/PCC.0b013e3181e89c3a" target="_blank" rel="noreferrer">10.1097/PCC.0b013e3181e89c3a</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). Type The nature or genre of the resource Journal Article 2010 Anand KJS Backlog Bereavement Berger J Carcillo J Communication Critical Care Dean JM Eggly S Harrison R Human Development Collaborative Pediatric Critical Care Research Network ICU Decision Making Journal Article Meert K Newth CJ Nicholson CE Parent Pediatric Critical Care Medicine Qualitative Methods The Eunice Kennedy Shriver National Institute of Child Health Willson DF Zimmerman J Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month Backlog URL Address <a href="http://doi.org/10.1016/j.bbadis.2012.03.012" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.bbadis.2012.03.012</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource X-linked adrenoleukodystrophy: clinical, metabolic, genetic and pathophysiological aspects Publisher An entity responsible for making the resource available Biochimica Et Biophysica Acta Date A point or period of time associated with an event in the lifecycle of the resource 2012 Subject The topic of the resource Female; Humans; Pregnancy; Mutation; Prenatal Diagnosis; Brain; Animals; Phenotype; Adrenoleukodystrophy; ATP-Binding Cassette Transporters; Fatty Acids Creator An entity primarily responsible for making the resource Kemp S; Berger J; Aubourg P Description An account of the resource X-linked adrenoleukodystrophy (X-ALD) is the most frequent peroxisomal disease. The two main clinical phenotypes of X-ALD are adrenomyeloneuropathy (AMN) and inflammatory cerebral ALD that manifests either in children or more rarely in adults. About 65% of heterozygote females develop symptoms by the age of 60years. Mutations in the ABCD1 gene affect the function of the encoded protein ALDP, an ATP-binding-cassette (ABC) transporter located in the peroxisomal membrane protein. ALDP deficiency impairs the peroxisomal beta-oxidation of very long-chain fatty acids (VLCFA) and facilitates their further chain elongation by ELOVL1 resulting in accumulation of VLCFA in plasma and tissues. While all patients have mutations in the ABCD1 gene, there is no general genotype-phenotype correlation. Environmental factors and a multitude of modifying genes appear to determine the clinical manifestation in this monogenetic but multifactorial disease. This review focuses on the clinical, biochemical, genetic and pathophysiological aspects of X-ALD. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.bbadis.2012.03.012" target="_blank" rel="noreferrer">10.1016/j.bbadis.2012.03.012</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). Type The nature or genre of the resource Journal Article 2012 Adrenoleukodystrophy Animals ATP-Binding Cassette Transporters Aubourg P Backlog Berger J Biochimica Et Biophysica Acta Brain Fatty Acids Female Humans Journal Article Kemp S Mutation Phenotype Pregnancy Prenatal Diagnosis