1 40 2 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 August 2022 List 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 August 2022 List URL Address <a href="http://doi.org/10.1177/00099228221099135" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1177/00099228221099135</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 The Impact of Caring for Children With Severe Neurological Impairment on Clinicians Publisher An entity responsible for making the resource available Clinical Pediatrics Date A point or period of time associated with an event in the lifecycle of the resource 2022 Subject The topic of the resource pediatric; palliative care; education; disability; burnout; workforce Creator An entity primarily responsible for making the resource Bogetz JF; Trowbridge A; Jonas D; Root MC; Mullin J; Hauer J Description An account of the resource Clinicians face many challenges in caring for children with severe neurological impairment (SNI). This study aimed to understand expert clinician perspectives on the personal impact of caring for children with SNI to highlight the challenges and potential solutions by underscoring the aspects of care that can be sustaining. Twenty-five clinicians participated including physicians (n = 8, 32%), social workers (n = 5, 20%), nurses/nurse practitioners (n = 5, 20%), case managers (n = 3, 12%), developmental therapists (n = 2, 8%), and other psychosocial clinicians (n = 2, 8%). Clinicians represented a variety of specialties including complex care/hospitalists (n = 10, 19%), palliative care (n = 7, 13%), and critical care (n = 6, 12%). Thematic content analysis revealed 3 major themes: (1) worries and challenges; (2) positive impact from being present; and (3) personal growth and meaning-making. Many clinicians described the ways listening, examining biases, learning about family perspectives, and normalizing the need for emotional processing helped them to understand their patients, families, and themselves more deeply. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/00099228221099135" target="_blank" rel="noreferrer noopener">10.1177/00099228221099135</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). 2022 August 2022 List Bogetz JF Burnout Clinical Pediatrics Disability Education Hauer J Jonas D Mullin J Palliative Care Pediatric Root MC Trowbridge A workforce 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 June 2019 List 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 June 2019 List URL Address <a href="http://doi.org/10.1002/ajmg.a.61149" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ajmg.a.61149</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 Experiences of children with trisomy 18 referred to pediatric palliative care services on two continents Publisher An entity responsible for making the resource available American Journal of Medical Genetics Date A point or period of time associated with an event in the lifecycle of the resource 2019 Subject The topic of the resource palliative care; trisomy 18; pediatrics Creator An entity primarily responsible for making the resource Mullin J; Wolfe J; Bluebond-Langner M; Craig F Description An account of the resource Children with trisomy 18 that survive beyond the neonatal period have multiple congenital anomalies, neurodevelopmental disability, and high mortality rates. The experience of children with trisomy 18 who receive pediatric palliative care services is largely unknown. We conducted a retrospective review of children with trisomy 18 receiving pediatric palliative care services at both Boston Children's Hospital, USA and Great Ormond Street Hospital, UK from January 1, 2004 to January 1, 2015. Fifty-eight children with trisomy 18 were referred to pediatric palliative care, 38 in the United Kingdom, 20 in the United States. Median age at referral was 19 days (2-89) in the United Kingdom, and 25 days (1-463) in the United States. Median length of time being followed by pediatric palliative care was 32 days (1-1,637) in the United Kingdom and 67 days (3-2,442) in the United States. The only significant difference in the two cohorts (p = .001) was in likelihood of receiving cardiac surgical intervention-37% in the United States, 0% the United Kingdom. Children with trisomy 18 receive pediatric palliative care services, with variable age at referral and for a variable length of time. Further research is needed to understand the experience of children with trisomy 18 and their families receiving pediatric palliative care services. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1002/ajmg.a.61149" target="_blank" rel="noreferrer noopener">10.1002/ajmg.a.61149</a> 2019 American Journal Of Medical Genetics Bluebond-Langner M Craig F June 2019 List Mullin J Palliative Care Pediatrics Trisomy 18 Wolfe J