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https://www.readbyqxmd.com/read/29671836/children-s-experience-of-symptoms-narratives-through-words-and-images
#1
REVIEW
Barbara M Sourkes
Children who live with a complex chronic or life-threatening illness face extraordinary challenges. Whether they are receiving disease-oriented treatment (aimed at potential cure or prolongation of life) or palliative treatment-or both concurrently-our challenge is to enhance their comfort and minimize their distress. Symptom management is thus a critical component of pediatric palliative care. Symptoms may be either physical or psychological in nature (or a confluence of both) and their effective management has a direct impact on the child's quality of life...
April 19, 2018: Children
https://www.readbyqxmd.com/read/29668027/heart-transplant-in-children-what-a-primary-care-provider-needs-to-know
#2
Swati Sehgal, Emily Shea, Lauren Kelm, Deepak Kamat
Heart transplantation is offered to children with heart failure that is not amenable to medical or surgical therapy. Indications for heart transplant include unrepairable congenital heart disease, failed palliation of congenital heart disease, and cardiomyopathies. There has been tremendous progress in this field since the first heart transplant was performed in 1967. Each year, approximately 500 pediatric heart transplants take place worldwide. Pediatric heart transplant survivors are living longer with their initial transplant...
April 1, 2018: Pediatric Annals
https://www.readbyqxmd.com/read/29660992/next-of-kin-s-notification-of-patient-s-death-a-qualitative-and-quantitative-preliminary-analysis
#3
Sasson Menahem, Tali Samson, Pesach Shvartzman
BACKGROUND: There are no published studies on notification of death by a next of kin to the treating medical staff. AIM: To explore the content and circumstances of death notifications by next of kin to the treating medical staff in a palliative home care unit. DESIGN: A cross-sectional study that combines qualitative and quantitative analysis. SETTING: Assessment of 153 telephone death notifications by a next of kin to the treating medical staff...
January 1, 2018: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/29656703/the-ethics-of-concurrent-care-for-children-a-social-justice-perspective
#4
Kim Mooney-Doyle, Jessica Keim-Malpass, Lisa C Lindley
Recent estimates indicate that over 40,000 children die annually in the United States and a majority have life-limiting conditions. Children at end of life require extensive healthcare resources, including multiple hospital readmissions and emergency room visits. Yet, many children still suffer from symptoms at end of life-including fatigue, pain, dyspnea, and anxiety-with less than 10% of these children utilizing hospice care services. A critical barrier to pediatric hospice use was the original federal regulations associated with the hospice care that required a diagnosis of 6 months to live and the discontinuation of all curative treatments...
January 1, 2018: Nursing Ethics
https://www.readbyqxmd.com/read/29649402/end-of-life-treatments-in-pediatric-patients-at-a-government-tertiary-cancer-center-in-india
#5
Jean Jacob, Jaskirt K Matharu, Gayatri Palat, Sudha Sinha, Eva Brun, Thomas Wiebe, Mikael Segerlantz
AIM: The primary objective of this study was to describe demographics and end-of-life treatments of children with cancer at a government tertiary cancer center in India. METHODS: A retrospective review was undertaken of medical charts of all children younger than 18 years, who died as inpatients while undergoing treatment at the pediatric oncology department between April and September 2016. Data were collected on demographics, diagnosis, treatments, survival, palliative care involvement, and symptoms at end of life...
March 20, 2018: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/29644095/rapid-whole-genome-sequencing-decreases-infant-morbidity-and-cost-of-hospitalization
#6
Lauge Farnaes, Amber Hildreth, Nathaly M Sweeney, Michelle M Clark, Shimul Chowdhury, Shareef Nahas, Julie A Cakici, Wendy Benson, Robert H Kaplan, Richard Kronick, Matthew N Bainbridge, Jennifer Friedman, Jeffrey J Gold, Yan Ding, Narayanan Veeraraghavan, David Dimmock, Stephen F Kingsmore
Genetic disorders are a leading cause of morbidity and mortality in infants. Rapid whole-genome sequencing (rWGS) can diagnose genetic disorders in time to change acute medical or surgical management (clinical utility) and improve outcomes in acutely ill infants. We report a retrospective cohort study of acutely ill inpatient infants in a regional children's hospital from July 2016-March 2017. Forty-two families received rWGS for etiologic diagnosis of genetic disorders. Probands also received standard genetic testing as clinically indicated...
2018: NPJ Genomic Medicine
https://www.readbyqxmd.com/read/29627863/the-codesign-of-an-interdisciplinary-team-based-intervention-regarding-initiating-palliative-care-in-pediatric-oncology
#7
Douglas L Hill, Jennifer K Walter, Jessica A Casas, Concetta DiDomenico, Julia E Szymczak, Chris Feudtner
PURPOSE: Children with advanced cancer are often not referred to palliative or hospice care before they die or are only referred close to the child's death. The goals of the current project were to learn about pediatric oncology team members' perspectives on palliative care, to collaborate with team members to modify and tailor three separate interdisciplinary team-based interventions regarding initiating palliative care, and to assess the feasibility of this collaborative approach. METHODS: We used a modified version of experience-based codesign (EBCD) involving members of the pediatric palliative care team and three interdisciplinary pediatric oncology teams (Bone Marrow Transplant, Neuro-Oncology, and Solid Tumor) to review and tailor materials for three team-based interventions...
April 7, 2018: Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer
https://www.readbyqxmd.com/read/29621556/from-fear-to-confidence-changing-providers-attitudes-about-pediatric-palliative-and-hospice-care
#8
Tamara Vesel, Christiana Beveridge
CONTEXT: Children have limited access to hospice care: few existing hospice programs have dedicated pediatric teams, and adult hospice providers feel inadequately trained to care for children. OBJECTIVES: The aim of this study is to increase access to pediatric hospice care by empowering adult hospice providers to care for children through a comprehensive education program. Education empowers providers by changing their attitudes from inadequacy to confidence. METHODS: The authors developed a two-day education program to train interdisciplinary teams of adult hospice providers in pediatric care...
April 2, 2018: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/29620556/parent-perspectives-of-receiving-early-information-about-palliative-and-end-of-life-care-options-from-their-child-s-pediatric-providers
#9
Verna L Hendricks-Ferguson, Joan E Haase
BACKGROUND: Parents of children diagnosed with cancer may experience decision regret about cancer treatment decisions and dissatisfaction with the perceived clarity in information received from their child's providers. OBJECTIVE: The aim of this study was to describe parental perspectives about receiving an early palliative care and end-of-life (PC/EOL) communication intervention titled "Communication Plan: Early through End of Life Intervention" (COMPLETE) from an interprofessional team of physician and registered nurse providers...
April 3, 2018: Cancer Nursing
https://www.readbyqxmd.com/read/29618308/genetics-and-therapies-for-gm2-gangliosidosis
#10
María Begona Cachon-Gonzalez, Eva Zaccariotto, Timothy Martin Cox
Tay-Sachs disease, caused by impaired β-N-acetylhexosaminidase activity, was the first GM2 gangliosidosis to be studied and one of the most severe and earliest lysosomal diseases to be described. The condition, associated with the pathological build-up of GM2 ganglioside, has acquired almost iconic status and serves as a paradigm in the study of lysosomal storage diseases. Inherited as a classical autosomal recessive disorder, this global disease of the nervous system induces developmental arrest with regression of attained milestones; neurodegeneration progresses rapidly to cause premature death in young children...
April 4, 2018: Current Gene Therapy
https://www.readbyqxmd.com/read/29603904/the-chromosome-18-clinical-resource-center
#11
Jannine D Cody, Minire Hasi-Zogaj, Patricia Heard, Annice Hill, David Rupert, Courtney Sebold, Bridgette Soileau, Daniel E Hale
BACKGROUND: The Chromosome 18 Clinical Research Center has created a pediatrician-friendly virtual resource center for managing patients with chromosome 18 abnormalities. To date, children with rare chromosome abnormalities have been cared for either symptomatically or palliatively as a reaction to the presenting medical problems. As we enter an era of genomic-informed medicine, we can provide children, even those with individually unique chromosome abnormalities, with proactive medical care and management based on the most contemporary data on their specific genomic change...
March 30, 2018: Molecular Genetics & Genomic Medicine
https://www.readbyqxmd.com/read/29603317/innovative-discharge-process-for-families-with-pediatric-short-bowel-syndrome-a-prospective-nonrandomized-trial
#12
Bram P Raphael, Maria Jorina, Mary Gallotto, Glendalis Grullon, Meghan Dalton, Melissa Takvorian-Bené, Christina Tascione, Carolyn Rosa, Jennifer McClelland, Megan Gray, Alexis K Potemkin, Courtney Glavin, Kathleen M Gura, Margaret K Murphy, Kierrah Leger, Judith Mahoney, Jessica Kerr, Al Ozonoff, Christopher P Duggan
BACKGROUND: Home parenteral nutrition (HPN) is a life-sustaining therapy for short bowel syndrome (SBS) and other severe digestive diseases, but complications are common. We evaluated a predischarge HPN hands-on training course to reduce complications in children with SBS, including hospital readmissions. METHODS: We conducted a prospective, nonrandomized controlled research study between April 1, 2014, and April 30, 2017. Eligible participants were children aged <18 years old with SBS and anticipated HPN dependence duration ≥6 months...
March 30, 2018: JPEN. Journal of Parenteral and Enteral Nutrition
https://www.readbyqxmd.com/read/29597333/from-the-child-s-word-to-clinical-intervention-novel-new-and-innovative-approaches-to-symptoms-in-pediatric-palliative-care
#13
Katharine E Brock, Joanne Wolfe, Christina Ullrich
Despite vast improvements in disease-based treatments, many children live with life-threatening disorders that cause distressing symptoms. These symptoms can be difficult to comprehensively assess and manage. Yet, frequent and accurate symptom reporting and expert treatment is critical to preserving a patient's physical, psychological, emotional, social, and existential heath. We describe emerging methods of symptom and health-related quality-of-life (HRQOL) assessment through patient-reported outcomes (PROs) tools now used in clinical practice and novel research studies...
March 28, 2018: Children
https://www.readbyqxmd.com/read/29575773/non-invasive-ventilation-practices-in-children-across-europe
#14
Juan Mayordomo-Colunga, Martí Pons-Òdena, Alberto Medina, Corsino Rey, Christophe Milesi, Merja Kallio, Andrea Wolfler, Mireia García-Cuscó, Demet Demirkol, Milagros García-López, Peter Rimensberger
OBJECTIVES: To describe the diversity in practice in non-invasive ventilation (NIV) in European pediatric intensive care units (PICUs). WORKING HYPOTHESIS: No information about the use of NIV in Pediatrics across Europe is currently available, and there might be a wide variability regarding the approach. STUDY DESIGN: Cross-sectional electronic survey. METHODOLOGY: The survey was distributed to the ESPNIC mailing list and to researchers in different European centers...
March 24, 2018: Pediatric Pulmonology
https://www.readbyqxmd.com/read/29566441/all-cause-mortality-rates-and-home-deaths-decreased-in-children-with-life-limiting-diagnoses-in-denmark-between-1994-and-2014
#15
Camilla Lykke, Ola Ekholm, Kjeld Schmiegelow, Marianne Olsen, Per Sjøgren
AIM: Specialised paediatric palliative care has not previously been a priority in Denmark. The aim of this study was to support its development and organisation, by examining why and where children died using official national data for 1994-2014. METHODS: We obtained data on 9,462 children who died before the age of 18 from the Danish Register of Causes of Death. The causes of deaths were listed according to the codes in the International Classification of Diseases...
March 22, 2018: Acta Paediatrica
https://www.readbyqxmd.com/read/29564906/-pediatric-palliative-care
#16
Mahulena Mojžíšová
Based on the definition by the WHO from 1998, palliative care for children is the active, total care of the childs body, mind and spirit, and involves giving care to the family. It begins when the illness is diagnosed and continues regardless of whether a child receives treatment directed at the disease. The World Health Organization (WHO) definition of pediatric palliative care was adopted by IMPaCCT (International Meeting for Palliative Care in Children, Trento) and became the key point of document, which defines and determines standards for care of children with life-limiting and life-threatening disease and recommends that these standards should be implemented in all European countries...
2018: Casopís Lékar̆ů C̆eských
https://www.readbyqxmd.com/read/29552895/evaluating-palliative-care-resources-available-to-the-public-using-the-internet-and-social-media
#17
Celeste H Claudio, Zoelle B Dizon, Tessie W October
BACKGROUND: Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care. AIM: To identify resources on the Internet and social media regarding palliative care and evaluate the information conveyed. DESIGN: A cross-sectional study of "palliative care" search results. SETTING: Top 10 Google websites, top 10 most viewed YouTube videos, and social media platforms, Facebook and Twitter, were searched...
January 1, 2018: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/29549119/the-case-for-early-use-of-rapid-whole-genome-sequencing-in-management-of-critically-ill-infants-late-diagnosis-of-coffin-siris-syndrome-in-an-infant-with-left-congenital-diaphragmatic-hernia-congenital-heart-disease-and-recurrent-infections
#18
Nathaly M Sweeney, Shareef A Nahas, Shimul Chowdhury, Miguel Del Campo, Marilyn C Jones, David P Dimmock, Stephen F Kingsmore, Rcigm Investigators
Congenital diaphragmatic hernia (CDH) results from incomplete formation of the diaphragm leading to herniation of abdominal organs into the thoracic cavity. CDH is associated with pulmonary hypoplasia, congenital heart disease and pulmonary hypertension. Genetically, it is associated with aneuploidies, chromosomal copy number variants, and single gene mutations. CDH is the most expensive non-cardiac congenital defect: Management frequently requires implementation of Extracorporeal Membrane Oxygenation (ECMO), which increases management expenditures 2...
March 16, 2018: Cold Spring Harbor Molecular Case Studies
https://www.readbyqxmd.com/read/29526348/interventions-in-the-operating-room-for-children-near-end-of-life-a-multidisciplinary-approach
#19
Marianne Goudreault, Nago Humbert, France Gauvin, Monia Marzouki, Catherine K Beaumier, Dickens St-Vil, Nelson Piché
INTRODUCTION: Pediatric surgeons are often involved in the management of severely or terminally ill patients. However, articles addressing their specific roles in the context of palliative care are almost inexistent. We sought to characterize the involvement of pediatric surgeons caring for children near end of life. METHODS: Chart review of children who had a procedure under general anesthesia within 6months of their death over a five-year period at a tertiary children's hospital (excluding traumas and neonatology cases)...
February 9, 2018: Journal of Pediatric Surgery
https://www.readbyqxmd.com/read/29498614/psychosocial-standards-of-care-for-children-with-cancer-and-their-families-a-national-survey-of-pediatric-oncology-social-workers
#20
Barbara Jones, Jennifer Currin-Mcculloch, Wendy Pelletier, Vicki Sardi-Brown, Peter Brown, Lori Wiener
In 2015, an interdisciplinary group of psychosocial experts developed The Standards of Psychosocial Care for Children with Cancer and Their Families. This paper presents data from a national survey of pediatric oncology social workers and their experiences in delivering psychosocial care to children and families. In total, 107 social workers from 81 cancer institutions participated in a 25-item online survey that mirrored the 15 Standards for Psychosocial Care. Both closed and open-ended questions were included...
April 2018: Social Work in Health Care
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