1
40
32
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November 2018 List
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<a href="http://doi.org/10.1016/j.ejpn.2018.09.002" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ejpn.2018.09.002</a>
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The role of the neuropediatrician in pediatric intensive care unit: Diagnosis, therapeutics and major participation in collaborative multidisciplinary deliberations about life-sustaining treatments' withdrawal
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European Journal of Paediatric Neurology
Date
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2018
Subject
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Life sutaining treatment;Neuropediatrician;Palliative care;Pediatric intensive care unit;Withdrawal/withholding treatment
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Toulouse J;Hully M;Brossier D;Viallard ML;de Saint Blanquat L;Renolleau S;Kossorotoff M;Desguerre I
Description
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BACKGROUND: In Pediatric Intensive Care Unit (PICU) two types of population require the intervention of neuropediatricians (NP): chronic brain diseases' patients who face repetitive and prolonged hospitalizations, and patients with acute brain failure facing the risk of potential neurologic sequelae, and both conditions may result in a limitation of life-sustaining treatments (LLST) decision. OBJECTIVE: To assess NP's involvement in LLST decisions within the PICU of a tertiary hospital. METHOD: Retrospective study of medical reports of patients hospitalized during 2014 in the Necker-Hospital PICU. Patients were selected using keywords ("cardiorespiratory arrest", "death", "withdrawal of treatment", "palliative care", "acute brain failure", or "chronic neurological disease"), and/or if they were assessed by a NP during the hospitalization. Demographic and medical data were analysed, including the NP's assessment and data about Collaborative Multidisciplinary Deliberation (CMD) to discuss potential LLST. RESULTS: Among 1160 children, 274 patients were included and 142 (56%) were assessed by a NP during their hospitalization for diagnosis (n = 55) and/or treatment (n = 95) management. NP was required for 59%-100% of patients with neurological acute failure, and for 14-44% of patients with extra neurological failure. A LLST decision was taken after a CMD for 27 (9.8%) of them, and a NP was involved in 19/27 (70%) of these decisions that occurred during the hospitalization (n = 19) or before (n = 8).12 patients died thereafter the LLST decision (40% of the 30 dead patients). CONCLUSION: NP are clearly involved in the decision-process of LLST for patients admitted in PICU, claiming for close collaboration to improve current practices and the quality of the care provided to children.
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<a href="http://doi.org/10.1016/j.ejpn.2018.09.002" target="_blank" rel="noreferrer noopener">10.1016/j.ejpn.2018.09.002</a>
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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).
2018
Brossier D
de Saint Blanquat L
Desguerre I
European Journal of Paediatric Neurology
Hully M
Kossorotoff M
Life sutaining treatment
Neuropediatrician
November 2018 List
Palliative Care
Pediatric Intensive Care Unit
Renolleau S
Toulouse J
Viallard ML
Withdrawal/withholding treatment
-
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
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November 2018 List
Text
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URL Address
<a href="http://doi.org/10.1097/01.pcc.0000537859.14793.d8" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537859.14793.d8</a>
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Title
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A three pronged approach to improving advance care planning and end of life decision making for patients with life limiting conditions admitted to picu
Publisher
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Pediatric Critical Care Medicine
Date
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2018
Subject
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advance care planning;decision making;Child;clinical audit;conference abstract;conversation;death;education;England;human;information retrieval;intensivist;landscape;palliative therapy
Creator
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Sidgwick P;Randle E;Petros A
Description
An account of the resource
Aims & Objectives: To develop three linked projects to enumerate, reflect upon and identify ways to improve the experience of children with life limiting conditions (LLC) admitted to PICU without previous contact with palliative care services or existing advance care plans (ACP). Methods Three projects included local education, regional data collection and contribution to national debate. An ACP in PICU simulation programme for clinicians in our large quaternary centre. A clinical audit to identify children with pre-existing LLCs with and without ACPs retrieved to PICU by a regional retrieval service in southeast England and who died during the admission for which they were transferred. A national review article engaging palliative care teams and intensivists in considering the current landscape for children with LLC in PICU and analysing the ACP as part of a means to improved care. Results All three projects identified significant areas for further work. The education project outcome was positive, identifying a particular need for ongoing training in handling complex conversations around death and dying. The clinical audit found that the overwhelming majority of patients with LLCs retrieved had no ACP in place. The review piece was more reflective and generated considerable debate amongst the PICU community. Conclusions ACP and end of life care planning is vital for children with LLCs, their families and those who care for them in PICU. There is significant unmet need and significant will to improve the quality of the conversations and services we offer these children and their families and to increase the numbers offered timely ACPs.
Identifier
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<a href="http://doi.org/10.1097/01.pcc.0000537859.14793.d8" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537859.14793.d8</a>
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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).
2018
Advance Care Planning
Child
Clinical Audit
conference abstract
Conversation
Death
Decision Making
Education
England
Human
information retrieval
Intensivist
landscape
November 2018 List
Palliative Therapy
Pediatric Critical Care Medicine
Petros A
Randle E
Sidgwick P
-
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
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November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000537439.06687.80" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537439.06687.80</a>
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Talking to families when death becomes a likely outcome-a pilot simulation programme to improve end of life conversations during and around PICU admission
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
conversation;death;simulation;advanced cancer;bone marrow transplantation;cancer staging;cerebrovascular accident;Child;conference abstract;controlled study;craniofacial surgery;experimental therapy;human;immunology;life sustaining treatment;multidisciplinary team;nursing role;oncology;palliative therapy;pulmonary hypertension;treatment failure
Creator
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Sidgwick P;Du Pre P;Skellett S
Description
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Aims & Objectives: End of life conversations form the basis of many complex communication scenarios in paediatric intensive care (PICU). These conversations are sometimes initiated late in the disease process. Anecdotal evidence is that many clinicians shy away from the subject matter for a wide variety of reasons. A multidisciplinary, one-day pilot simulation course to address this unmet need was designed by the PICU and palliative care teams for members of the multidisciplinary team (MDT) who admit to our PICU. Methods The course was oversubscribed and candidates were evenly drawn from medical and senior nursing roles; specialties represented included PICU, immunology, bone marrow transplant, oncology, pulmonary hypertension and craniofacial surgery. A range of clinically complex and personally challenging clinical scenarios were developed for use with experienced educational actors. These included: Previously fit and well child post cerebrovascular accident with a deeply religious family Child with end stage cancer whose parents had the option of an experimental treatment Child with advanced pulmonary hypertension whose parents are angry about failure of treatment Child with incurable malignancy with parents reluctant to ask for withdrawal of life sustaining treatment but who secretly wish it to be offered A demonstration scenario was run by the faculty for all candidates and four simulations were run in groups of four. Simulation safety and debrief tools were utilised throughout Results Feedback from the day was universally positive. Conclusions There is significant need for this course. Plans are now under way to extend it to a wider cohort of the PICU MDT and run it on a regular basis.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.pcc.0000537439.06687.80" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537439.06687.80</a>
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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).
2018
Advanced Cancer
Bone Marrow Transplantation
Cancer Staging
Cerebrovascular Accident
Child
conference abstract
Controlled Study
Conversation
craniofacial surgery
Death
Du Pre P
Experimental Therapy
Human
Immunology
Life Sustaining Treatment
Multidisciplinary team
November 2018 List
nursing role
Oncology
Palliative Therapy
Pediatric Critical Care Medicine
pulmonary hypertension
Sidgwick P
Simulation
Skellett S
Treatment Failure
-
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
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November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1080/00325481.2018.1512253" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/00325481.2018.1512253</a>
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Title
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Are pediatric patients just short adults? most commonly prescribed drugs for pediatric hospice patients
Publisher
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Postgraduate Medicine
Date
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2018
Subject
The topic of the resource
hospice patient;pediatric patient;acid;adult;cancer patient;central nervous system cancer;chi square test;Child;conference abstract;constipation;controlled study;corticosteroid;death;diagnosis;diazepam;diphenhydramine;drug formulation;drug therapy;dyspnea;Female;genetic disorder;haloperidol;hospice care;human;hyoscyamine;institutional review;laxative;Length of Stay;levetiracetam;lorazepam;macrogol;major clinical study;metoclopramide;morphine;nausea;ondansetron;opiate;pain;paracetamol;patient information;practice guideline;preschool child;prochlorperazine;retrospective study;salbutamol;seizure;unclassified drug;vitamin
Creator
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Sera L;Morgan J;McPherson ML
Description
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Purpose According to the most recently published data from National Hospice and Palliative Care Organization, approximately 78% of hospice providers in the United States serve pediatric patients, and the majority of these serve 1-10 patients per year. As with adult patients, palliative care for children focuses on holistic care, including the alleviation of physical, psychosocial, and spiritual suffering. Medications are used in hospice patients to palliate physical symptoms of terminal illness, including pain, dyspnea, nausea, and fatigue. The purpose of this study was to characterize the most commonly prescribed medications and medication classes in a population of pediatric hospice patients. Methods We conducted a retrospective review of a patient information database compiled by a national hospice organization. The database contained demographic information, as well as information on drug name, dosage, formulation, and strength. Medications were also characterized by pharmacological class. We compared proportions of the most commonly prescribed pharmacological classes among the three most common admitting diagnoses: cancer, central nervous system disorders, and genetic disorders. We used chi-square test or Fisher's exact test to detect any associations between admitting diagnosis and drug class. The institutional review board at the University of Maryland determined that this study was not human subjects research. Results Of 177 patients in the database, 116 patients were included in the study; these patients were admitted to hospice on or after January 1, 2011 and discharged by death on or before December 31, 2016. Sixty-one patients who were discharged prior to death were excluded. The average age of patients at admission was 6 years old (SD = 6.1) and 63% of patients were female. The median length of stay was 14.5 days (range: 0-411 days). A total of 3 017 medication orders were evaluated. Medication classes used for symptom management were most commonly prescribed. Six of the 10 most commonly prescribed drugs (morphine, lorazepam, acetaminophen, hyoscyamine, prochlorperazine, and haloperidol) were all included in the symptom management medication kits provided to most patients at admission. Other drugs prescribed for over 20% of patients included metoclopramide, diphenhydramine, albuterol, altropine, ondansetron, diazepam, polyethylene glycol, levetiracetam. Opioid analgesics, anxiolytics, anticholinergics, and antiemetics were prescribed to over 50% of patients at some point during admission. Other frequently prescribed medication classes non-opioid anageiscs, anticonvulsants, antiinfectives, laxatives, corticosteroids, acid reducers, antipsychotics, and vitamins/supplements. Of the 20 most commonly prescribed drug classes, patients with cancer were significantly more likely than those with CNS disorders or genetic disorders to be prescribed anticholinergics (p = 0.03), antiemetics (p < 0.0001), non-opioid analgesics (p = 0.003), laxatives (p = 0.003), corticosteroids (p = 0.0004), antihistamines (p = 0.01), acid reducers (p = 0.03), and antipsychotics (p < 0.0001). Conclusions Medications commonly prescribed for children receiving hospice care include those intended to treat symptoms including pain, dyspnea, nausea, seizures, and constipation. A general understanding of medications used in hospice care may be helpful in the development of educational materials, medications guidelines and protocols, and questions for future research.
Identifier
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<a href="http://doi.org/10.1080/00325481.2018.1512253" target="_blank" rel="noreferrer noopener">10.1080/00325481.2018.1512253</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).
2018
acid
Adult
Cancer Patient
central nervous system cancer
Chi Square Test
Child
conference abstract
Constipation
Controlled Study
Corticosteroid
Death
Diagnosis
diazepam
diphenhydramine
drug formulation
Drug Therapy
Dyspnea
Female
Genetic Disorder
Haloperidol
Hospice Care
hospice patient
Human
hyoscyamine
Institutional Review
laxative
Length Of Stay
levetiracetam
Lorazepam
macrogol
Major Clinical Study
McPherson ML
metoclopramide
Morgan J
Morphine
Nausea
November 2018 List
ondansetron
Opiate
Pain
Paracetamol
patient information
pediatric patient
Postgraduate Medicine
Practice Guideline
Preschool Child
prochlorperazine
Retrospective Study
salbutamol
Seizure
Sera L
Unclassified Drug
vitamin
-
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Title
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November 2018 List
Text
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November 2018 List
URL Address
<a href="http://doi.org/10.1177/1049909117739853" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909117739853</a>
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Title
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When and Why Do Neonatal and Pediatric Critical Care Physicians Consult Palliative Care?
Publisher
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American Journal of Hospice and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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Care coordination;Communication;complex chronic conditions;critical care;Critical Care/organization & administration;family;Female;health care quality;Humans;Intensive Care Units;Interviews as Topic;Length of Stay;Male;Neonatal/organization & administration;Palliative care;Palliative Care/organization & administration;Patient Care Planning/organization & administration;Pediatric intensive care unit;Pediatric/organization & administration;Pediatricians/psychology;Professional Family Relations;Qualitative Research
Creator
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Richards CA;Starks H;O'Connor MR;Bourget E;Lindhorst T;Hays R;Doorenbos AZ
Description
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BACKGROUND: Parents of children admitted to neonatal and pediatric intensive care units (ICUs) are at increased risk of experiencing acute and post-traumatic stress disorder. The integration of palliative care may improve child and family outcomes, yet there remains a lack of information about indicators for specialty-level palliative care involvement in this setting. OBJECTIVE: To describe neonatal and pediatric critical care physician perspectives on indicators for when and why to involve palliative care consultants. METHODS: Semistructured interviews were conducted with 22 attending physicians from neonatal, pediatric, and cardiothoracic ICUs in a single quaternary care pediatric hospital. Transcribed interviews were analyzed using content and thematic analyses. RESULTS: We identified 2 themes related to the indicators for involving palliative care consultants: (1) palliative care expertise including support and bridging communication and (2) organizational factors influencing communication including competing priorities and fragmentation of care. CONCLUSIONS: Palliative care was most beneficial for families at risk of experiencing communication problems that resulted from organizational factors, including those with long lengths of stay and medical complexity. The ability of palliative care consultants to bridge communication was limited by some of these same organizational factors. Physicians valued the involvement of palliative care consultants when they improved efficiency and promoted harmony. Given the increasing number of children with complex chronic conditions, it is important to support the capacity of ICU clinical teams to provide primary palliative care. We suggest comprehensive system changes and critical care physician training to include topics related to chronic illness and disability.
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<a href="http://doi.org/10.1177/1049909117739853" target="_blank" rel="noreferrer noopener">10.1177/1049909117739853</a>
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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).
2018
American Journal Of Hospice And Palliative Care
Bourget E
Care coordination
Communication
Complex Chronic Conditions
Critical Care
Critical Care/organization & Administration
Doorenbos AZ
Family
Female
Hays R
Health Care Quality
Humans
Intensive Care Units
Interviews As Topic
Length Of Stay
Lindhorst T
Male
Neonatal/organization & administration
November 2018 List
O'Connor MR
Palliative Care
Palliative Care/organization & Administration
Patient Care Planning/organization & administration
Pediatric Intensive Care Unit
Pediatric/organization & Administration
Pediatricians/psychology
Professional Family Relations
Qualitative Research
Richards CA
Starks H
-
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
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November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0203" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0203</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
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Mindful Movement: Tai Chi, Gentle Yoga, and Qi Gong for Hospitalized Pediatric Palliative Care Patients and Family Members
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
mindfulness;palliative therapy;qigong;Tai Chi;yoga;adverse outcome;caregiver;Child;hospital patient;human;intensive care unit;letter;movement therapy;occupational therapist;pediatric patient;quality of life
Creator
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Parry SM;Staenberg B;Weaver MS
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<a href="http://doi.org/10.1089/jpm.2018.0203" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0203</a>
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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).
2018
adverse outcome
Caregiver
Child
Hospital Patient
Human
Intensive Care Unit
Journal of Palliative Medicine
Letter
mindfulness
movement therapy
November 2018 List
occupational therapist
Palliative Therapy
Parry SM
pediatric patient
qigong
Quality Of Life
Staenberg B
Tai Chi
Weaver MS
Yoga
-
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
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November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000537849.40363.f7" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537849.40363.f7</a>
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Title
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Paediatric palliative care: Are we doing enough? a retrospective review of deaths over 5 years in an academic tertiary hospital paediatric intensive care unit
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
cause of death;palliative therapy;Pediatric intensive care unit;retrospective study;tertiary care center;adolescent;adult;advanced cancer;analgesia;artificial ventilation;cancer patient;Child;conference abstract;controlled study;demography;drug withdrawal;Female;human;inotropism;life sustaining treatment;major clinical study;Male;malignant neoplasm;medical history;medical record;neurologic disease;pediatric patient;resuscitation
Creator
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Ng MCG;Koh PL
Description
An account of the resource
Aims & Objectives: To study the epidemiology of deaths in our paediatric intensive care unit (PICU) over 5 years, so that we can better understand the dying experience of these patients and improve on palliative care for patients with life-limiting illnesses. Methods The medical records of all patients who died in the PICU from 2012 to 2016 were reviewed. Information including demographic data, past medical history, cause of death, referral to palliative care and use of life-sustaining therapies were collated. Results 81 patients died in the PICU from 2012 to 2016. Most deaths occurred in children aged 11 to 18 years old (31%), with a median age of 14. 69 (85%) patients had pre-existing life-limiting medical conditions, such as cancer and neurological disease. Of the 81 patients, 6 (7%) were known to palliative care services prior to admission and 6 (7%) were referred to palliative care during the admission. In terms of life-sustaining measures, 64 (79%) had invasive ventilation, 60 (74%) required inotropic support and 17 (21%) had cardiopulmonary resuscitation. In those whom death was expected, 59 (75%) patients received analgesia during the last 24 hours before death. 64 (79%) patients died after withdrawal or withholding of life-sustaining measures and 14 (17%) died after unsuccessful CPR. Conclusions Although majority of paediatric patients who died had pre-existing life-limiting conditions, very few were referred to palliative care. More can be done to improve the care of these patients, such as early referral to palliative care and establishment of advanced care plans.
Identifier
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<a href="http://doi.org/10.1097/01.pcc.0000537849.40363.f7" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537849.40363.f7</a>
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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).
2018
Adolescent
Adult
Advanced Cancer
Analgesia
Artificial Ventilation
Cancer Patient
Cause Of Death
Child
conference abstract
Controlled Study
Demography
Drug Withdrawal
Female
Human
inotropism
Koh PL
Life Sustaining Treatment
Major Clinical Study
Male
Malignant Neoplasm
Medical History
Medical Record
Neurologic Disease
Ng MCG
November 2018 List
Palliative Therapy
Pediatric Critical Care Medicine
Pediatric Intensive Care Unit
pediatric patient
Resuscitation
Retrospective Study
tertiary care center
-
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
November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1177/1049909117739852" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909117739852</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
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Unexpected Survivors: Children With Life-Limiting Conditions of Uncertain Prognosis
Publisher
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American Journal of Hospice & Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Congenital Abnormalities/mo [Mortality];Critical Illness/mo [Mortality];Palliative Care/sn [Statistics & Numerical Data];Survivors/sn [Statistics & Numerical Data];Child;Cohort Studies;Female;Humans;Male;North Carolina;Preschool;Prognosis;Retrospective Studies;Survivorship
Creator
An entity primarily responsible for making the resource
Nageswaran S;Hurst A;Radulovic A
Description
An account of the resource
OBJECTIVE: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of children with life-limiting illnesses who survived longer than the expectations of health-care providers. STUDY DESIGN: This is a retrospective cohort study conducted in a tertiary-care children's hospital in North Carolina. "Unexpected survivors," defined as children who survived despite a prognosis of imminent death or significantly longer than prognosticated by health-care providers, were identified from among 349 children enrolled in a pediatric palliative care program between March 2008 and October 2012. Children's clinical courses were followed until September 2015 or their death. RESULTS: Eighteen (5%) children were identified as unexpected survivors; 17 (10 girls and 7 boys) were included. Congenital anomalies were the most common diagnoses. Neonatal intensive care unit was the most frequent setting of prognostication. Thirteen children used some form of medical technology at the time of prognostication. Eleven children received hospice services. Eight died during the observation period but survived significantly longer than expected (median survival time 1.5 years), and 9 survived beyond the observation period (median survival time 5.9 years). CONCLUSIONS: Unexpected survivors are a small group of children with life-limiting conditions. Clinicians should be aware of the possibility of prognostic inaccuracy, able to communicate prognostic uncertainty to parents, and engage supportive services when prognosticating poor survival. Prospective studies are needed to understand outcomes of children with life-limiting illnesses of uncertain prognosis.
Identifier
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<a href="http://doi.org/10.1177/1049909117739852" target="_blank" rel="noreferrer noopener">10.1177/1049909117739852</a>
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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).
2018
American Journal of Hospice & Palliative Medicine
Child
Cohort Studies
Congenital Abnormalities/mo [Mortality]
Critical Illness/mo [Mortality]
Female
Humans
Hurst A
Male
Nageswaran S
North Carolina
November 2018 List
Palliative Care/sn [Statistics & Numerical Data]
Preschool
Prognosis
Radulovic A
Retrospective Studies
Survivors/sn [Statistics & Numerical Data]
Survivorship
-
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<a href="http://doi.org/10.1016/j.pedn.2018.09.007" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pedn.2018.09.007</a>
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Identifying Opportunities to Provide Family-centered Care for Families With Children With Type 1 Spinal Muscular Atrophy
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Journal of Pediatric Nursing
Date
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2018
Subject
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Care coordination;Family support;Family centered care;Spinal muscular atrophy
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Murrell DV;Crawford CA;Jackson CT;Lotze TE;Wiemann CM
Description
An account of the resource
STUDY PURPOSE: The purpose of this qualitative study was to understand, from the parent perspective, the experience of the family whose child has Type 1 spinal muscular atrophy (Type 1 SMA), in the emergency center, hospital, and clinical care settings to identify opportunities for improved family-centered care (FCC). DESIGN AND METHODS: This study used a qualitative descriptive design with individual or small group interviews guided by a semi-structured questionnaire. Reviewers used framework analysis to identify gaps in the provision of FCC and opportunities for improvement with respect to services health professionals may provide families of children with Type 1 SMA. RESULTS: Nineteen families with 22 children with Type 1 SMA participated. Results are organized according to eight basic tenets of FCC. Family-to-family interactions strongly impacted participants' decision-making and perceived level of support. Participants valued strong family/provider partnerships, feeling heard and respected by their providers, and receiving complete education regarding disease trajectory. CONCLUSIONS: Our analyses revealed both successful application of FCC and gaps in care where FCC could have been used to benefit families who have children with Type 1 SMA. As a pediatric chronic illness affects the whole family, FCC is important in maintaining the providers' focus on the family during the child's care. PRACTICE IMPLICATIONS: There are opportunities for nursing, social work, care managers and others to engage as care coordinators to explain the family's goals and values to the medical team. Care coordinators help ensure understanding between families and providers, empowering the family to articulate their hopes and concerns.
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<a href="http://doi.org/10.1016/j.pedn.2018.09.007" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2018.09.007</a>
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2018
Care coordination
Crawford CA
Family Centered Care
family support
Jackson CT
Journal of Pediatric Nursing
Lotze TE
Murrell DV
November 2018 List
Spinal Muscular Atrophy
Wiemann CM
-
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November 2018 List
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000537367.72140.25" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537367.72140.25</a>
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Caring for dying children in the paediatric intensive care unit [PICU]
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Pediatric Critical Care Medicine
Date
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2018
Subject
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Pediatric intensive care unit;Child;child parent relation;clinical article;conference abstract;critically ill patient;Female;human;intimacy;Male;medical examination;nurse;palliative therapy;practice guideline;Sweden;terminal care
Creator
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Mattsson J
Description
An account of the resource
Aims & Objectives: Caring for dying children is complex and requires coordination of all resources. In PICU the main objective is to save lives and ensure vital functions in critically ill children. However due to the child's critical and life threatening condition, there is always the possibility the child will not survive. The acuity and technical nature of the intensive care context can provide an obstacle in the transition to palliative care and furthermore conflict with the affected families' needs. The study aim was to enlightening caring as it is represented in caring situations of dying children at PICU. Methods An Interpretative Phenomenological design was applied. The data collection was performed at three PICU in Sweden at 2011 and 2016. Caring situations of a total of 18 children were observed, six cases were estimated as end of life care or life threatening conditions. Nurses and parents were interviewed in direct connection to the observation. Results findings showed that for nurses, it was a challenge to change perspective from curative to palliative care. Medical examinations and treatment was experienced to disturb the dying child thus causing unnecessary suffering. Parents found it difficult to leave their dying children even just for a moment and the space in PICU did not support closeness and parenting but rather separated the dying child from her/his family. Conclusions In conclusion, these findings illuminates the importance of guidelines and training in palliative care in PICU. Children and their family ought to have the best care possibly when affected by life-limiting or life-threatening illness.
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<a href="http://doi.org/10.1097/01.pcc.0000537367.72140.25" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537367.72140.25</a>
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2018
Child
Child Parent Relation
Clinical Article
conference abstract
Critically Ill Patient
Female
Human
intimacy
Male
Mattsson J
Medical Examination
November 2018 List
Nurse
Palliative Therapy
Pediatric Critical Care Medicine
Pediatric Intensive Care Unit
Practice Guideline
Sweden
Terminal Care
-
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Title
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November 2018 List
Text
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November 2018 List
URL Address
<a href="http://doi.org/10.1111/apa.14331" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.14331</a>
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All-cause mortality rates and home deaths decreased in children with life-limiting diagnoses in Denmark between 1994 and 2014
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Acta Paediatrica, International Journal of Paediatrics
Date
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2018
Subject
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all cause mortality;childhood mortality;death;home;accident;adolescent;adult;article;automutilation;Epidemiology;Child;chromosome aberration;Epidemiology;congenital malformation;Epidemiology;Denmark;human;infant;infant mortality;International Classification of Diseases;neoplasm;Epidemiology;perinatal death;priority journal
Creator
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Lykke C;Ekholm O;Schmiegelow K;Olsen M;Sjogren P
Description
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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 9462 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. Results: The all-cause mortality rate decreased by 52% over the study period, and infants below one year accounted for 61% of all deaths. The decline in infant mortality (26%) primarily reflected fewer deaths due to congenital malformations and chromosomal abnormalities (68%) and perinatal deaths (30%). In children aged one year to 17 years, the substantial decrease (65%) was due to external causes (75%) and neoplasms (57%). The relative proportion of hospital deaths increased, while home deaths decreased. Conclusion: All-cause mortality rate decreased markedly, and the relative proportion of hospital deaths increased. The results may reflect more aggressive and effective treatment attempts to save lives, but some terminally ill children may be deprived of the option of dying at home.
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<a href="http://doi.org/10.1111/apa.14331" target="_blank" rel="noreferrer noopener">10.1111/apa.14331</a>
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2018
accident
Acta Paediatrica, International Journal of Paediatrics
Adolescent
Adult
all cause mortality
Article
automutilation
Child
Childhood Mortality
Chromosome Aberration
Congenital Malformation
Death
Denmark
Ekholm O
Epidemiology
Home
Human
Infant
Infant Mortality
International Classification of Diseases
Lykke C
Neoplasm
November 2018 List
Olsen M
Perinatal Death
Priority Journal
Schmiegelow K
Sjogren P
-
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Title
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November 2018 List
Text
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November 2018 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2018-315628" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2018-315628</a>
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Title
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Research priorities for childhood chronic conditions: a workshop report
Publisher
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Archives of Disease in Childhood
Date
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2018
Subject
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childhood chronic conditions;priority setting partnerships;Qualitative Research
Creator
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Lopez-Vargas P;Tong A;Crowe S;Alexander SI;Caldwell PHY;Campbell DE;Couper J;Davidson A;De S;Fitzgerald DA;Haddad S;Hill S;Howell M;Jaffe A;James LJ;Ju A;Manera KE;McKenzie A;Morrow AM;Odgers HL;Pinkerton R;Ralph AF;Richmond P;Shaw PJ;Singh-Grewal D;van Zwieten A;Wake M;Craig JC
Description
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BACKGROUND: Chronic conditions are the leading cause of mortality, morbidity and disability in children. However, children and caregivers are rarely involved in identifying research priorities, which may limit the value of research in supporting patient-centred practice and policy. OBJECTIVE: To identify priorities of patients, caregivers and health professionals for research in childhood chronic conditions and describe the reason for their choices. SETTING: An Australian paediatric hospital and health consumer organisations. METHODS: Recruited participants (n=73) included patients aged 8 to 14 years with a chronic condition (n=3), parents/caregivers of children aged 0 to 18 years with a chronic condition (n=19), representatives from consumer organisations (n=13) and health professionals including clinicians, researches (n=38) identified and discussed research priorities. Transcripts were thematically analysed. RESULTS: Seventy-eight research questions were identified. Five themes underpinned participants' priorities: maintaining a sense of normality (enabling participation in school, supporting social functioning, promoting understanding and acceptance), empowering self-management and partnership in care (overcoming communication barriers, gaining knowledge and skills, motivation for treatment adherence, making informed decisions, access and understanding of complementary and alternative therapies),strengthening ability to cope (learning to have a positive outlook, preparing for home care management, transitioning to adult services), broadening focus to family (supporting sibling well-being, parental resilience and financial loss, alleviating caregiver burden), and improving quality and scope of health and social care (readdressing variability and inequities, preventing disease complications and treatment side effects, identifying risk factors, improving long-term outcomes, harnessing technology, integrating multidisciplinary services). CONCLUSION: Research priorities identified by children, caregivers and health professionals emphasise a focus on life participation, psychosocial well-being, impact on family and quality of care. These priorities may be used by funding and policy organisations in establishing a paediatric research agenda.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2018-315628" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2018-315628</a>
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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).
2018
Alexander SI
Archives of Disease in Childhood
Caldwell PHY
Campbell DE
childhood chronic conditions
Couper J
Craig JC
Crowe S
Davidson A
De S
Fitzgerald DA
Haddad S
Hill S
Howell M
Jaffe A
James LJ
Ju A
Lopez-Vargas P
Manera KE
McKenzie A
Morrow AM
November 2018 List
Odgers HL
Pinkerton R
priority setting partnerships
Qualitative Research
Ralph AF
Richmond P
Shaw PJ
Singh-Grewal D
Tong A
van Zwieten A
Wake M
-
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Title
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November 2018 List
Text
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November 2018 List
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000537853.70857.ca" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537853.70857.ca</a>
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Attitudes of the four groups of population toward end-of-life care of their child: A nationwide survey
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Pediatric Critical Care Medicine
Date
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2018
Subject
The topic of the resource
terminal care;adult;cancer patient;caregiver;Child;conference abstract;controlled study;Female;health care system;hospice;human;life sustaining treatment;lifespan;major clinical study;Male;multicenter study;palliative therapy;pediatric patient;physician;population group;questionnaire
Creator
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Kim YS;Choi YH;Lee B;Park JD;Yun YH
Description
An account of the resource
Aims & Objectives: Preference for care in dying children is important for the quality of end-of-life care but little is known about attitudes of the relatives of the children toward the preference according to the expected life span. Methods We conducted a national survey about the preference for care in dying of pediatric patients in four participants groups. Results We analyzed nationwide questionnaires of total 4,154 participants; 928 physicians from the 12 hospitals and the Korean Medical Association, 1,241 general population, 979 adult cancer patients, and 1,006 family caregivers from 12 general hospitals. The preference for aggressive treatment or life-sustaining treatment (LST) decreased and the preference for hospice-palliative care (HPC) increased according to the decrease of expected life span in all the groups. The positive preference for aggressive treatment is significantly higher in the patients and family caregivers groups than in the physicians group. The preference for LST is significantly higher in the three groups compare to the physicians group 6. But the preference for HPC is significantly lower in these groups compare to the physicians group. Conclusions The preferences for aggressive treatment, LST and HPC have changed according to the decrease of expected life span, and were different among the population group. Communication program and health care systems to reduce the gap of the preferences between the general population, patients or family carefivers and physicians are needed.
Identifier
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<a href="http://doi.org/10.1097/01.pcc.0000537853.70857.ca" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537853.70857.ca</a>
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2018
Adult
Cancer Patient
Caregiver
Child
Choi YH
conference abstract
Controlled Study
Female
Health Care System
Hospice
Human
Kim YS
Lee B
Life Sustaining Treatment
Lifespan
Major Clinical Study
Male
Multicenter Study
November 2018 List
Palliative Therapy
Park JD
Pediatric Critical Care Medicine
pediatric patient
Physician
population group
Questionnaire
Terminal Care
Yun YH
-
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Title
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November 2018 List
Text
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November 2018 List
URL Address
<a href="http://doi.org/10.3389/fpsyg.2018.01629" target="_blank" rel="noreferrer noopener">http://doi.org/10.3389/fpsyg.2018.01629</a>
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Title
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Empathy and the Public Perception of Stillbirth and Memory Sharing: An Australian Case
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Frontiers in Psychology
Date
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2018
Subject
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empathy;empathy attitudes action model;memory sharing;public perception;stillbirth
Creator
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Keeble CJ;Loi NM;Thorsteinsson EB
Description
An account of the resource
Objective: Stillbirth devastates families and leaves them struggling to grieve the death of their baby in a society that expects grief symptoms to decrease over time. Previous research has suggested that increased memory sharing opportunities can lead to positive mental health outcomes. The aim of the current study was to examine people's perceptions of stillbirth as well as the perceived appropriateness of affected parents sharing memories of their child. In addition, we examined whether manipulating empathy would have an effect on people's perceptions of stillbirth. Method: Participants included 200 Australian men and women 18 to 74 years of age (M = 36.76, SD = 12.59) randomly allocated to one of three experimental conditions (i.e., low empathy, high empathy, and control). The high empathy group watched a video about stillbirth and was instructed to imagine how the people portrayed felt; the low empathy group watched the same video but was instructed to remain detached; and the control group watched an unrelated video. Participants were then asked how much money they would be willing to donate to a fictional stillbirth organization, followed by the completion of questionnaires measuring (a) perceptions of stillbirth, (b) empathy, and (c) the appropriateness of parents sharing memories of a stillborn child with different groups of people over time. Results: The empathy manipulation had an effect on empathy and the willingness to help effected parents (high empathy vs. control). However, empathy did not have an effect on participants' perceptions toward stillbirth nor appropriateness of sharing memories. The appropriateness of sharing memories decreased as time passed and social distance increased. Discussion: Individuals who have experienced stillbirth need to be aware that societal expectations and their own expectations in relation to sharing memories may not correspond to each other and that they may need to educate their social group about their need to share memories. Removing the taboo surrounding stillbirth is vital for both parents and those to whom they would wish to communicate.
Identifier
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<a href="http://doi.org/10.3389/fpsyg.2018.01629" target="_blank" rel="noreferrer noopener">10.3389/fpsyg.2018.01629</a>
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2018
Empathy
empathy attitudes action model
Frontiers in Psychology
Keeble CJ
Loi NM
memory sharing
November 2018 List
public perception
Stillbirth
Thorsteinsson EB
-
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Title
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November 2018 List
Text
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Citation List Month
November 2018 List
URL Address
<a href="http://doi.org/10.1038/s41372-018-0102-2" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41372-018-0102-2</a>
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Title
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Opinions of Israeli neonatologists about life and death decisions in neonates
Publisher
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Journal of Perinatology
Date
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2018
Subject
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Israeli;medical decision making;neonatologist;physician attitude;terminal care;adult;age;article;demography;disabled person;disease severity;dying;ethnicity;family attitude;Female;health care cost;human;Israel;Male;medical ethics;medicolegal aspect;middle aged;neonatal intensive care unit;normal human;personal experience;prospective study;psychological well being;questionnaire;religion;sex difference;simulation
Creator
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Kasirer MY;Mimouni FB;Bin-nun A;Schimmel MS
Description
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Background:: In 2005, the Israeli parliament passed the "law of dying patients" legalizing life and death decisions (do not resuscitate) in patients with life expectancy less than 6 months. Objective:: To determine whether ethnic and religious backgrounds (both religion and religiosity) influence neonatologists' attitudes in simulated clinical situations and opinions about the new law. Design/Methods:: Prospective design, using standard questionnaire sent to all 155 board-certified practising Israeli Neonatologists. The questionnaire sought demographic and descriptive data, personal opinions regarding four simulated cases, and opinions about five statements regarding variables that may influence decision-making. Statistical analyses were by stepwise backward regression analysis, linear regression, and Kruskal-Wallis tests, wherever indicated. Results:: Sixty-nine percent of the neonatologists replied, representing 27 NICUs out of the 29 NICUs in Israel. Most neonatologists would respect the wish of the family as long as it would be within the limits of the law or their personal beliefs. In stepwise regression analysis, religion, religiosity, age, gender, experience, or country of training did not influence significantly the neonatologists' opinions or their decisions in simulated practice. Most neonatologists felt that Ethical Committees had no role in NICUs and were seldom consulted. Most felt that likelihood of severe handicap was critical in decision-making. Issues related to treatment cost of a handicapped or dying infant, as well as impact of a handicapped infant on family's well-being, were not deemed critical. Conclusion:: Israeli neonatologists appear to be a relatively homogeneous group in end-of-life decisions, regardless of their ethnic, religious, or religiosity background.
Identifier
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<a href="http://doi.org/10.1038/s41372-018-0102-2" target="_blank" rel="noreferrer noopener">10.1038/s41372-018-0102-2</a>
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2018
Adult
Age
Article
Bin-nun A
Demography
disabled person
Disease Severity
Dying
Ethnicity
Family Attitude
Female
Health Care Cost
Human
Israel
Israeli
Journal Of Perinatology
Kasirer MY
Male
Medical Decision Making
Medical Ethics
medicolegal aspect
Middle Aged
Mimouni FB
Neonatal Intensive Care Unit
Neonatologist
Normal Human
November 2018 List
Personal Experience
Physician Attitude
Prospective Study
psychological well being
Questionnaire
Religion
Schimmel MS
sex difference
Simulation
Terminal Care
-
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Title
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November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.7196/sajog.1224" target="_blank" rel="noreferrer noopener">http://doi.org/10.7196/sajog.1224</a>
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Bereaved mothers' attitudes regarding autopsy of their stillborn baby
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South African journal of obstetrics and gynaecology
Date
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2017
Creator
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Human M;Goldstein RD;Groenewald CA;Kinney HC;Odendaal HJ
Description
An account of the resource
Background: Here we present additional information from the Safe Passage Study, where the effect of alcohol exposure during pregnancy on sudden infant death syndrome and stillbirth was investigated. Objective: To explore bereaved mothers' attitudes toward obtaining an autopsy on their stillborn baby, and the future implications of consenting or non-consenting to autopsy in retrospect. Methods: Demographic data was obtained by a questionnaire. A largely qualitative mixed-methods approach was used to meet the aims of the study, using an exploratory and descriptive research design to provide a detailed description of maternal attitudes. A semi-structured questionnaire based on information from literature and reflections on practice was administered during individual interviews. Results: We interviewed 25 women who had had a recent stillbirth. The time interval between the time of consenting to autopsy and completing this study ranged from 6 to 18 months. Most participants reported that autopsy results provided peace of mind and helped alleviate their feelings of blame. Participants who were unable to comprehend the results reported negative reactions to receiving autopsy results. The majority of participants were of the opinion that they benefited from consenting to autopsy. Conclusion: Autopsy and the disclosure of its results generally contribute positively to coping following stillbirth.
Identifier
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<a href="http://doi.org/10.7196/sajog.1224" target="_blank" rel="noreferrer noopener">10.7196/sajog.1224</a>
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2017
Goldstein RD
Groenewald CA
Human M
Kinney HC
November 2018 List
Odendaal HJ
South African journal of obstetrics and gynaecology
-
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Title
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November 2018 List
Text
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November 2018 List
URL Address
<a href="http://doi.org/10.1136/bmjpo-2017-000102" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjpo-2017-000102</a>
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Advance care planning for adolescent patients with life-threatening neurological conditions: A survey of Japanese paediatric neurologists
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BMJ Paediatrics Open
Date
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2017
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Advance care planning;neurologic disease;neurologist;pediatrician;Adult;article;artificial ventilation;cross-sectional study;do not resuscitate order;Family;Female;health care survey;hematologist;Human;Japan;living will;Male;Middle Aged;priority journal;prognosis;terminal care
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Yotani N;Kizawa Y;Shintaku H
Description
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Objective To evaluate current attitudes and barriers to advance care planning for adolescent patients with life-threatening conditions among paediatric neurologists. Design Cross-sectional study. A self-reported questionnaire was administered to assess the practice of advance care planning, advance directives and barriers to advance care planning for adolescent patients with life-threatening conditions. All board-certified paediatric neurologists in Japan were surveyed and those who had experience in taking care of adolescent patients with decision-making capacity were analysed. We compared the results with those of paediatric haematologists reported previously. results In total, 186 paediatric neurologists were analysed. If the patient's prognosis was <3 months, only about 30% of paediatric neurologists reported having discussions with patients, such as 'do not attempt resuscitation' orders (28%) and ventilator use (32%), whereas more than 70% did discuss these topics with patients' families. About half of the paediatric neurologists did not discuss advance directives at the end of life with their patients, whereas over 75% did discuss advance directives with patients' families. Compared with paediatric haematologists, paediatric neurologists had more end-of-life discussions with patients, such as where treatment and care will take place, do not attempt resuscitation orders, and the use of a ventilator, if the patient's prognosis was >>1 year. conclusion About half or less of the paediatric neurologists discussed advance care planning and advance directives with their adolescent patients who had life-threatening conditions, even if the patient's prognosis was <3 months. They tended to discuss advance care planning and advance directives more with families than with patients themselves.
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<a href="http://doi.org/10.1136/bmjpo-2017-000102" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2017-000102</a>
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2017
Adult
Advance Care Planning
Article
Artificial Ventilation
BMJ Paediatrics Open
Cross-sectional Study
do not resuscitate order
Family
Female
Health Care Survey
hematologist
Human
Japan
Kizawa Y
living will
Male
Middle Aged
Neurologic Disease
neurologist
November 2018 List
Pediatrician
Priority Journal
Prognosis
Shintaku H
Terminal Care
Yotani N
-
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Title
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November 2018 List
Text
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Citation List Month
November 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2017.0532</a>
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National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on Pediatric Palliative Care
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Journal of Palliative Medicine
Date
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2018
Subject
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cancer palliative therapy;childhood cancer;medical education;Pediatrics;Advance care planning;article;Canada;Child;clinical practice;health care quality;health practitioner;Human;professional knowledge;quality of life;self care;tertiary care center;total quality management
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Widger K;Wolfe J;Friedrichsdorf S;Pole JD;Brennenstuhl S;Liben S;Greenberg M;Bouffet E;Siden H;Husain A;Whitlock JA;Leyden M;Rapoport A
Description
An account of the resource
Abstract Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC?-Pediatrics) curriculum on the following: (1) knowledge dissemination; (2) health professionals' knowledge; (3) practice change; and (4) quality of PPC. Design: An integrated knowledge translation approach was used with pre-/posttest evaluation of care quality. Setting/Subjects/Measurements: Regional Teams of 3?6 health professionals based at 15 pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who taught the curriculum to health professionals (learners) and implemented quality improvement (QI) projects. Trainers recorded the number of learners at each education session and progress on QI goals. Learners completed knowledge surveys. Care quality was assessed through surveys with a cross-sectional sample of children with cancer and their parents about symptoms, quality of life, and care quality plus reviews of deceased patients' health records. Results: Seventy-two Trainers taught 3475 learners; the majority (96.7%) agreed that their PPC knowledge improved. In addition, 10/15 sites achieved practice change QI goals. The only improvements in care quality were an increased number of days from referral to PPC teams until death by a factor of 1.54 (95% confidence interval [CI]?=?1.17?2.03) and from first documentation of advance care planning until death by a factor of 1.50 (95% CI?=?1.06?2.11), after adjusting for background variables. Conclusion: While improvements in care quality were only seen in two areas, our approach was highly effective in achieving knowledge dissemination, knowledge improvement, and practice change goals.
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<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0532</a>
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2018
Advance Care Planning
Article
Bouffet E
Brennenstuhl S
Canada
Cancer Palliative Therapy
Child
Childhood Cancer
Clinical Practice
Friedrichsdorf S
Greenberg M
Health Care Quality
health practitioner
Human
Husain A
Journal of Palliative Medicine
Leyden M
Liben S
Medical Education
November 2018 List
Pediatrics
Pole JD
professional knowledge
Quality Of Life
Rapoport A
Self Care
Siden H
tertiary care center
Total Quality Management
Whitlock JA
Widger K
Wolfe J
-
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Title
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November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0178" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0178</a>
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Title
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Use of an Electronic Journal Club to Increase Access to and Acceptance of Palliative Care Literature across General Pediatricians and Pediatric Subspecialties
Publisher
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Journal of Palliative Medicine
Date
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2018
Subject
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Education;journal club;pediatric palliative care
Creator
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Weaver MS;Pawliuk C;Wichman C
Description
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CONTEXT: Implementation of pediatric palliative care as a primary practice relevant for all pediatricians and pediatric subspecialists requires a grounding, shared knowledge. This study reports on the innovative application of a monthly Palliative Care E-Journal Club (Pal Care Club) to foster shared palliative care knowledge hospital wide. OBJECTIVES: To explore the impact of a monthly electronic journal club to increase the number of palliative care-relevant articles read and discussed and to enhance provider comfort with the integration and introduction of palliative care. METHODS: A single cohort, predesign-post-design was utilized to explore the impact of a monthly palliative care electronic journal club. RESULTS: Preintervention barriers to reading pediatric palliative care literature were primarily access and time. The mean of paired differences (post-pre) for the number of full-text articles read per month was 2.56 (SD = 1.25). The journal club intervention increased participant personal comfort with integrating palliative care principles at the bedside (p < 0.0001) and introducing pediatric palliative care to patients and families (p < 0.0001). CONCLUSION: An electronic journal club is a feasible and acceptable means of increasing number of palliative care articles read and discussed across an institution as well as enhancing pediatric palliative care knowledge across subspecialist and general pediatric services.
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<a href="http://doi.org/10.1089/jpm.2018.0178" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0178</a>
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2018
Education
journal club
Journal of Palliative Medicine
November 2018 List
Pawliuk C
Pediatric Palliative Care
Weaver MS
Wichman C
-
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Title
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November 2018 List
Text
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Citation List Month
November 2018 List
URL Address
<a href="http://doi.org/10.1542/peds.2018-0478H" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2018-0478H</a>
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Title
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In the Best Interest of the. . .Parents: Norwegian Health Personnel on the Proper Role of Parents in Neonatal Decision-making
Publisher
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Pediatrics
Date
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2018
Creator
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Ursin L;Syltern J
Description
An account of the resource
OBJECTIVES: The role of parents in life-and-death decision-making for infants born at the border of viability is challenging. Some argue that parents should have the final say in decisions about life-sustaining treatment. Others disagree. In this article, we report views from health care personnel (HCP) on the appropriate parental role. METHODS: Focus group interviews with 5 different groups of HCP (neonatal nurses, midwifes, obstetricians, mother-fetal specialists, and neonatologists) dealing with life-and-death decisions throughout pregnancy and birth were performed at the Norwegian University of Science and Technology and at St Olav's Hospital in Trondheim, Norway in 2014-2017. Interviews were taped and transcribed. Inductive analysis was performed for each group discussion for emergent ethical themes. A summary of the transcribed discussion was sent to the relevant focus group participants for comments. RESULTS: Our participants felt strongly that doctors, not parents, should have the final say. They did not think parents should have to live with the burden of the decision. The possible disagreement between parents, lack of necessary knowledge, experience, time, and emotional stability all point toward the neonatologist as the optimal decision-maker, within a model of "Patient Preference-Satisfaction Paternalism." CONCLUSIONS: The general attitude of our groups was that parents should have a say and be included in a thorough information and decision-making process. The doctor, or a team of HCP, however, should make the final decision, being in the best position both epistemologically and normatively to promote the best interest of both parents and the child.
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<a href="http://doi.org/10.1542/peds.2018-0478H" target="_blank" rel="noreferrer noopener">10.1542/peds.2018-0478H</a>
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2018
November 2018 List
Pediatrics
Syltern J
Ursin L
-
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Title
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November 2018 List
Text
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Citation List Month
November 2018 List
URL Address
<a href="http://doi.org/10.1016/j.ejpn.2018.09.002" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ejpn.2018.09.002</a>
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The role of the neuropediatrician in pediatric intensive care unit: Diagnosis, therapeutics and major participation in collaborative multidisciplinary deliberations about life-sustaining treatments' withdrawal
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European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society
Date
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2018
Subject
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Life sutaining treatment;Neuropediatrician;Palliative care;Pediatric intensive care unit;Withdrawal withholding treatment
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Toulouse J;Hully M;Brossier D;Viallard ML;de Saint Blanquat L;Renolleau S;Kossorotoff M;Desguerre I
Description
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BACKGROUND: In Pediatric Intensive Care Unit (PICU) two types of population require the intervention of neuropediatricians (NP): chronic brain diseases' patients who face repetitive and prolonged hospitalizations, and patients with acute brain failure facing the risk of potential neurologic sequelae, and both conditions may result in a limitation of life-sustaining treatments (LLST) decision. OBJECTIVE: To assess NP's involvement in LLST decisions within the PICU of a tertiary hospital. METHOD: Retrospective study of medical reports of patients hospitalized during 2014 in the Necker-Hospital PICU. Patients were selected using keywords ("cardiorespiratory arrest", "death", "withdrawal of treatment", "palliative care", "acute brain failure", or "chronic neurological disease"), and/or if they were assessed by a NP during the hospitalization. Demographic and medical data were analysed, including the NP's assessment and data about Collaborative Multidisciplinary Deliberation (CMD) to discuss potential LLST. RESULTS: Among 1160 children, 274 patients were included and 142 (56%) were assessed by a NP during their hospitalization for diagnosis (n = 55) and/or treatment (n = 95) management. NP was required for 59%-100% of patients with neurological acute failure, and for 14-44% of patients with extra neurological failure. A LLST decision was taken after a CMD for 27 (9.8%) of them, and a NP was involved in 19/27 (70%) of these decisions that occurred during the hospitalization (n = 19) or before (n = 8).12 patients died thereafter the LLST decision (40% of the 30 dead patients). CONCLUSION: NP are clearly involved in the decision-process of LLST for patients admitted in PICU, claiming for close collaboration to improve current practices and the quality of the care provided to children.
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<a href="http://doi.org/10.1016/j.ejpn.2018.09.002" target="_blank" rel="noreferrer noopener">10.1016/j.ejpn.2018.09.002</a>
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2018
Brossier D
de Saint Blanquat L
Desguerre I
European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society
Hully M
Kossorotoff M
Life sutaining treatment
Neuropediatrician
November 2018 List
Palliative Care
Pediatric Intensive Care Unit
Renolleau S
Toulouse J
Viallard ML
Withdrawal withholding treatment
-
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Title
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November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1177/0030222818799949" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0030222818799949</a>
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"As if Nothing Happened": Experiences of Bereaved Parents in Romania
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Omega
Date
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2018
Subject
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bereavement;Grief;Romania;trauma;traumatic stress
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Thieleman K;Cacciatore J
Description
An account of the resource
Prior research has found high levels of distress in parents who experience the death of a child; however, Romanian parents, whose experiences are influenced by the nation's shared historical trauma, have not been studied. This mixed-methods study found very high levels of distress in a sample of 237 bereaved parents in Romania, primarily women. Specifically, 89% of respondents scored above the clinical cutoff for trauma responses, 66% did so for anxious responses, and 82% did so for depressive responses. Qualitative analyses of respondents' narratives suggest that, through complex interactions between political, social, and medical systems, the lack of care after the death of a child seems to incite additional distress in parents. These findings warrant further exploration of traumatic grief in Romania, especially in the context of historical and political trauma, and of ways in which support can be provided to grieving parents in this unique cultural milieu.
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<a href="http://doi.org/10.1177/0030222818799949" target="_blank" rel="noreferrer noopener">10.1177/0030222818799949</a>
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2018
Bereavement
Cacciatore J
Grief
November 2018 List
Omega
Romania
Thieleman K
Trauma
traumatic stress
-
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Title
A name given to the resource
November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2018-001532" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2018-001532</a>
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Title
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Neonatal palliative care: a practical checklist approach
Publisher
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BMJ supportive & palliative care
Date
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2018
Subject
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neonatal;paediatrics;Palliative care
Creator
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Taylor N;Liang YF;Tinnion R
Description
An account of the resource
OBJECTIVES: Following publication of detailed national neonatal palliative care guidance, practical regional guidance, in the form of multidisciplinary 'checklists', was implemented aiming to improve the quality of neonatal palliative care. METHODS: Case note audit was used to examine the quality of locally delivered neonatal palliative care before and after regional guidance implementation. RESULTS: 27 patients were allocated to the 'before' cohort and 10 to the 'after' cohort. Introduction of the checklists was apparently associated with improvements in domains of pain relief and comfort care, monitoring, fluids and nutrition, completion of diagnostics, treatment ceiling decisions, resuscitation status and discussion with parents. Other support for parents was poorly adhered to. CONCLUSION: Regional guidance improved some aspects of palliative care delivery though other areas remained suboptimal. Other strategies, for example, consultation with paediatric palliative care services, need to be considered to further improve the quality of palliative care delivered to babies with life-limiting illnesses.
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2018-001532" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001532</a>
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2018
BMJ Supportive & Palliative Care
Liang YF
Neonatal
November 2018 List
Paediatrics
Palliative Care
Taylor N
Tinnion R
-
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Title
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November 2018 List
Text
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Citation List Month
November 2018 List
URL Address
<a href="http://doi.org/10.1177/1049909117743474" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909117743474</a>
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Title
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Life-Sustaining Treatment Status at the Time of Death in a Japanese Pediatric Intensive Care Unit
Publisher
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American Journal of Hospice & Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
decision making;Intensive Care Units;Life Support Care;Terminal Care sn [Statistics & Numerical Data];Adolescent;Artificial;Brain Death di [Diagnosis];Child;Female;Humans;Length of Stay;Life Support Care;Male;Pediatric sn [Statistics & Numerical Data];Preschool;Respiration;Resuscitation Orders;Retrospective Studies;Terminal Care px [Psychology];Time Factors;Withholding Treatment
Creator
An entity primarily responsible for making the resource
Suzuki F;Takeuchi M;Tachibana K;Isaka K;Inata Y;Kinouchi K
Description
An account of the resource
BACKGROUND: Substantial variability exists among countries regarding the modes of death in pediatric intensive care units (PICUs). However, there is limited information on end-of-life care in Japanese PICUs. Thus, this study aimed to elucidate the characteristics of end-of-life care practice for children in a Japanese PICU. METHODS: We examined life-sustaining treatment (LST) status at the time of death based on medical chart reviews from 2010 to 2014. All deaths were classified into 3 groups: limitation of LST (limitation group, death after withholding or withdrawal of LST or a do not attempt resuscitation order), no limitation of LST (no-limitation group, death following failed resuscitation attempts), or brain death (brain death group). RESULTS: Of the 62 patients who died, 44 (71%) had limitation of LST, 18 (29%) had no limitation of LST, and none had brain death. In the limitation group, the length of PICU stay was longer than that in the no-limitation group (13.5 vs 2.5 days; P = .01). The median time to death after the decision to limit LST was 2 days (interquartile range: 1-5.5 days), and 94% of the patients were on mechanical ventilation at the time of death in the limitation group. CONCLUSIONS: Although limiting LST was a common practice in end-of-life care in a Japanese PICU, a severe limitation of LST such as withdrawal from the ventilator was hardly practiced, and a considerable LST was still provided at the time of death.
Identifier
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<a href="http://doi.org/10.1177/1049909117743474" target="_blank" rel="noreferrer noopener">10.1177/1049909117743474</a>
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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).
2018
Adolescent
American Journal of Hospice & Palliative Medicine
Artificial
Brain Death di [Diagnosis]
Child
Decision Making
Female
Humans
Inata Y
Intensive Care Units
Isaka K
Kinouchi K
Length Of Stay
Life Support Care
Male
November 2018 List
Pediatric sn [Statistics & Numerical Data]
Preschool
Respiration
Resuscitation Orders
Retrospective Studies
Suzuki F
Tachibana K
Takeuchi M
Terminal Care px [Psychology]
Terminal Care sn [Statistics & Numerical Data]
Time Factors
Withholding Treatment
-
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Title
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November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1186/s12904-018-0360-y" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-018-0360-y</a>
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Title
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Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: A qualitative study
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
decision making;intensive care;life sustaining treatment;neonatology;Palliative therapy;qualitative research;religion;treatment withdrawal;article;Child;father;genetic transcription;health care personnel;Human;human tissue;interview;major clinical study;Male;medical record;mother;narrative;prognosis;thematic analysis
Creator
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Superdock AK;Barfield RC;Brandon DH;Docherty SL
Description
An account of the resource
Background: Medical advances have led to new challenges in decision-making for parents of seriously ill children. Many parents say religion and spirituality (R&S) influence their decisions, but the mechanism and outcomes of this influence are unknown. Health care providers (HCPs) often feel unprepared to discuss R&S with parents or address conflicts between R&S beliefs and clinical recommendations. Our study sought to illuminate the influence of R&S on parental decision-making and explore how HCPs interact with parents for whom R&S are important. Methods: A longitudinal, qualitative, descriptive design was used to (1) identify R&S factors affecting parental decision-making, (2) observe changes in R&S themes over time, and (3) learn about HCP perspectives on parental R&S. The study sample included 16 cases featuring children with complex life-threatening conditions. The length of study for each case varied, ranging in duration from 8 to 531 days (median = 380, mean = 324, SD = 174). Data from each case included medical records and sets of interviews conducted at least monthly with mothers (n = 16), fathers (n = 12), and HCPs (n = 108). Thematic analysis was performed on 363 narrative interviews to identify R&S themes and content related to decision-making. Results: Parents from 13 cases reported R&S directly influenced decision-making. Most HCPs were unaware of this influence. Fifteen R&S themes appeared in parent and HCP transcripts. Themes most often associated with decision-making were Hope & Faith, God is in Control, Miracles, and Prayer. Despite instability in the child's condition, these themes remained consistently relevant across the trajectory of illness. R&S influenced decisions about treatment initiation, procedures, and life-sustaining therapy, but the variance in effect of R&S on parents' choices ultimately depended upon other medical & non-medical factors. Conclusions: Parents consider R&S fundamental to decision-making, but apply R&S concepts in vague ways, suggesting R&S impact how decisions are made more than what decisions are made. Lack of clarity in parental expressions of R&S does not necessarily indicate insincerity or underestimation of the seriousness of the child's prognosis; R&S can be applied to decision-making in both functional and dysfunctional ways. We present three models of how religious and spiritual vagueness functions in parental decision-making and suggest clinical applications.
Identifier
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<a href="http://doi.org/10.1186/s12904-018-0360-y" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0360-y</a>
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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).
2018
Article
Barfield RC
BMC Palliative Care
Brandon DH
Child
Decision Making
Docherty SL
Father
genetic transcription
Health Care Personnel
Human
Human Tissue
Intensive Care
Interview
Life Sustaining Treatment
Major Clinical Study
Male
Medical Record
Mother
Narrative
Neonatology
November 2018 List
Palliative Therapy
Prognosis
Qualitative Research
Religion
Superdock AK
Thematic Analysis
Treatment Withdrawal
-
Dublin Core
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Title
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November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000537861.99545.54" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537861.99545.54</a>
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Title
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Bereavement follow-up: Listening and learning
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
bereavement;follow up;learning;Child;clinical article;conference abstract;consultation;diagnosis;Female;genetic transcription;Human;intensivist;Male;memory;nurse;staff;terminal care
Creator
An entity primarily responsible for making the resource
Subramanian G;Consterdine K;Ryan C
Description
An account of the resource
Aims & Objectives: Providing family focussed care through lessons learned from bereavement follow-up. Methods RMCH is a tertiary PICU in UK with 750 admissions annually. Families of all patients who die in PICU are offered bereavement follow-up at 6-8 weeks. The meeting is attended by the parents, consultant intensivist and a family liaison nurse (recently appointed). As a service improvement project, these meetings have been routinely observed by a senior staff member using shadowing techniques (April 2017 onwards). Transcripts are recorded in a pre-designed field journal. Team debrief is held following meetings to identify recurrent themes to guide service improvement. Results 25 patients died between January-November 2017. 6 families attended bereavement follow-up. Families who attended had unanswered questions around care (pre-hospital/hospital) or were waiting to get the final postmortem /genetic test results. Two families declined as they were "happy with the care", three are awaiting follow-up dates and the remaining did not reply. To improve quality of discussions, team realised that prior interaction with parents to identify their objectives from the meeting is essential. Recurrent themes that emerged from shadowing technique included feedback around care (pre-hospital / in the hospital), communication gaps (during transfer of care, what to expect upon PICU admission, what happens after a child dies), making memories and wanting to know pending test results. Conclusions Families who have unanswered questions around care or diagnosis, tend to attend bereavement follow up. Shadowing technique has revealed what families want from end of life care and has helped to shape improvement in our service.
Identifier
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<a href="http://doi.org/10.1097/01.pcc.0000537861.99545.54" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537861.99545.54</a>
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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).
2018
Bereavement
Child
Clinical Article
conference abstract
Consterdine K
Consultation
Diagnosis
Female
Follow Up
genetic transcription
Human
Intensivist
Learning
Male
Memory
November 2018 List
Nurse
Pediatric Critical Care Medicine
Ryan C
Staff
Subramanian G
Terminal Care
-
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
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November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000537862.99545.8f" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537862.99545.8f</a>
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Title
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Changing times-PICU and palliative care
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Palliative therapy;Adult;amber;awareness;conference abstract;controlled study;Education;Female;Human;Male;Multidisciplinary team;oncology;patient information;prospective study;staff;work
Creator
An entity primarily responsible for making the resource
Subramanian G;Kauffmann L
Description
An account of the resource
Aims & Objectives: To identify patients admitted to PICU who might benefit from palliative care using the Spectrum of Children's Palliative Care Needs. Methods Prospective study between July 2016-December2017. Cases admitted to the PICU were assessed on the spectrum for palliative care needs every Wednesday using the surprise question: Would you be surprised if the child was still alive in the next few days to weeks (RED), would you be surprised if the child died in the next months or years (AMBER), would you be surprised if the child died of their condition in childhood (YELLOW), would you be surprised if the child died early of this condition but lived until adulthood (GREEN). Acute admissions (<10days admission with no previous history), Oncology patients, and those greater than 16 years were excluded. Up to date patient information was discussed in a multi-disciplinary team setting. Results Data from 53 MDTs over 78 weeks was analysed in study period with at least 2 meetings every month. 58% of the patients admitted to PICU would have benefitted from palliative care with 39% of these being in the amber group. Conclusions There is a large population of patients admitted to PICU who would benefit from palliative care. Staff awareness, education and support to care for this complex group of patients through changes in recruitment strategies and job descriptions, staff psychological support, in house palliative care consultant availability and development of family liaison roles is essential.
Identifier
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<a href="http://doi.org/10.1097/01.pcc.0000537862.99545.8f" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537862.99545.8f</a>
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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).
2018
Adult
amber
Awareness
conference abstract
Controlled Study
Education
Female
Human
Kauffmann L
Male
Multidisciplinary team
November 2018 List
Oncology
Palliative Therapy
patient information
Pediatric Critical Care Medicine
Prospective Study
Staff
Subramanian G
Work
-
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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
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November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000537863.07170.4e" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537863.07170.4e</a>
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Title
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Improving communication within multi-disciplinary teams in children with life limiting conditions
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Multidisciplinary team;Child;conference abstract;constitutive androstane receptor;death;endogenous compound;Human;intensivist;nurse;Palliative therapy;patient referral
Creator
An entity primarily responsible for making the resource
Subramanian G;Consterdine K;Kauffmann L
Description
An account of the resource
Aims & Objectives: 60% of children admitted to RMCH PICU might benefit from palliative care (previous case review). Co-coordinating and maintaining continuity of care in these children with multi-speciality input is challenging. Weekly Multi disciplinary Team Meeting (MDT) and follow up was introduced in PICU to improve care in this cohort. Methods Weekly MDT meeting (co-located specialist teams, Intensivists, palliative care consultant, family liaison nurses) were held over a year. Spectrum of Palliative Care Needs was used to 1. Recognise children who might benefit from palliative care 2. Identify need for MDT/Lead consultant/End of life discussions if not already done 3. Update community and specialist teams 4. Discuss/Review advanced care plan (ACP). Results Actions from 32 MDTs were analysed (minimum 2 meetings monthly) in children with palliative care needs (62%). Actions that had to take place within the hospital were completed: Liaising with specialist nurses: 7; Initiating ACP: 4; Identifying ICU lead: 16; Recognising need for end of life discussions, planning for death and place of death: 14; referral to in-house palliative care team: 17; Organising MDT: 11. However only 44% of local teams (outside hospital) were contacted (action that involved teams outside the hospital) and feedback from local teams after discharge was inconsistent. Conclusions Weekly MDT meetings to identify children who might benefit from palliative care are a good start to improving communication and maintaining continuity of care. More initiatives need to be taken by the intensivists in speciality hospitals to improve communication with the wider network of professionals looking after children with life limiting conditions.
Identifier
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<a href="http://doi.org/10.1097/01.pcc.0000537863.07170.4e" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537863.07170.4e</a>
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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).
2018
Child
conference abstract
Consterdine K
constitutive androstane receptor
Death
Endogenous Compound
Human
Intensivist
Kauffmann L
Multidisciplinary team
November 2018 List
Nurse
Palliative Therapy
Patient Referral
Pediatric Critical Care Medicine
Subramanian G
-
Dublin Core
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Title
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November 2018 List
Text
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Citation List Month
November 2018 List
URL Address
<a href="http://doi.org/10.1080/07481187.2018.1503621" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/07481187.2018.1503621</a>
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Title
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Lived experience of a child's chronic illness and death: A qualitative systematic review of the parental bereavement trajectory
Publisher
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Death studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
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Dutta O;Tan-Ho G;Choo PY;Ho AHY
Description
An account of the resource
To understand the lived experience of parents who have lost their child to a chronic life-limiting condition, six major databases were searched by adhering to the Preferred Reporting Items for Systematic Review and Meta-Analyses guidelines. Articles were screened for appropriateness using the Sample, Phenomenon of Interest, Design, Evaluation, Research type tool, and relevant qualitative studies were selected for full-text data analysis using Thematic Synthesis. Findings were categorized into 13 themes that were further organized into a four-phase trajectory of parental bereavement experience of child loss, namely: Liminal Margin, Holding Space, Navigating Losses, and Reconstructing Lives. The findings are discussed in the light of existing literature with practical recommendations for enhancing parental bereavement support services.
Identifier
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<a href="http://doi.org/10.1080/07481187.2018.1503621" target="_blank" rel="noreferrer noopener">10.1080/07481187.2018.1503621</a>
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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).
2018
Choo PY
Death studies
Dutta O
Ho AHY
November 2018 List
Tan-Ho G
-
Dublin Core
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Title
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November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1007/s10730-017-9339-y" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s10730-017-9339-y</a>
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Title
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Why Are There So Few Ethics Consults in Children's Hospitals?
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HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Children's hospitals;Clinical;Decision Making ethics;Ethicists psychology;Ethics;Ethics committee;Ethics consultation;Ethics Consultation utilization;Hospitals;Humans;Pediatric organization & administration;Pediatrics
Creator
An entity primarily responsible for making the resource
Carter B;Brockman M;Garrett J;Knackstedt A;Lantos J
Description
An account of the resource
In most children's hospitals, there are very few ethics consultations, even though there are many ethically complex cases. We hypothesize that the reason for this may be that hospitals develop different mechanisms to address ethical issues and that many of these mechanisms are closer in spirit to the goals of the pioneers of clinical ethics than is the mechanism of a formal ethics consultation. To show how this is true, we first review the history of collaboration between philosophers and physicians about clinical dilemmas. Then, as a case-study, we describe the different venues that have developed at one children's hospital to address ethical issues. At our hospital, there are nine different venues in which ethical issues are regularly and explicitly addressed. They are (1) ethics committee meetings, (2) Nursing Ethics Forum, (3) ethics Brown Bag workshops, (4) PICU ethics rounds, (5) Grand Rounds, (6) NICU Comprehensive Care Rounds, (7) Palliative Care Team (PaCT) case conferences, (8) multidisciplinary consults in Fetal Health Center, and (9) ethics consultations. In our hospital, ethics consults account for only a tiny percentage of ethics discussions. We suspect that most hospitals have multiple and varied venues for ethics discussions. We hope this case study will stimulate research in other hospitals analyzing the various ways in which ethicists and ethics committees can build an ethical environment in hospitals. Such research might suggest that ethicists need to develop a different set of "core competencies" than the ones that are needed to do ethics consultations. Instead, they should focus on their skills in creating multiple "moral spaces" in which regular and ongoing discussion of ethical issues would take place. A successful ethicist would empower everyone in the hospital to speak up about the values that they believe are central to respectful, collaborative practice and patient care. Such a role is closer to what the first hospital philosophers set out to do than in the role of the typical hospital ethics consultant today.
Identifier
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<a href="http://doi.org/10.1007/s10730-017-9339-y" target="_blank" rel="noreferrer noopener">10.1007/s10730-017-9339-y</a>
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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).
2018
Brockman M
Carter B
Children's hospitals
Clinical
Decision Making ethics
Ethicists psychology
Ethics
Ethics committee
Ethics consultation
Ethics Consultation utilization
Garrett J
HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues
Hospitals
Humans
Knackstedt A
Lantos J
November 2018 List
Pediatric organization & administration
Pediatrics
-
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
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November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1111/apa.14394" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.14394</a>
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Title
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Low prevalence of palliative care and ethics consultations for children with chronic critical illness
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Acta Paediatrica, International Journal of Paediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
childhood disease th [Therapy];Chronic disease;critical illness;Ethics;Palliative therapy;article;artificial ventilation;consultation;hospital admission;Human;intensive care unit;Length of Stay;prevalence;priority journal;tracheostomy
Creator
An entity primarily responsible for making the resource
Boss RD;Falck A;Goloff N;Hutton N;Miles A;Shapiro M;Weiss EM;Donohue PK
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<a href="http://doi.org/10.1111/apa.14394" target="_blank" rel="noreferrer noopener">10.1111/apa.14394</a>
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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).
Description
An account of the resource
Medical advances over the past two decades have increased the numbers of children who survive serious conditions. Mortality from premature birth and genetic syndromes has improved such that more clinicians offer, and more families request, interventions to prolong their child's life. While some interventions promise cure, others result in chronic disease states that require ongoing medical care.
Paediatric intensive care units (ICUs) across the United States (U.S.) report increasing numbers of children with prolonged and recurrent hospitalisations and medical complexity 1. We have suggested that this population be considered ‘chronically critically ill (CCI)’ 2. The CCI designation for adult ICU patients signals to families and clinicians alike that the patient's prognosis is poorer than predicted by their primary diagnosis alone.
2018
Acta Paediatrica, International Journal of Paediatrics
Article
Artificial Ventilation
Boss RD
childhood disease th [Therapy]
Chronic Disease
Consultation
Critical Illness
Donohue PK
Ethics
Falck A
Goloff N
Hospital Admission
Human
Hutton N
Intensive Care Unit
Length Of Stay
Miles A
November 2018 List
Palliative Therapy
Prevalence
Priority Journal
Shapiro M
Tracheostomy
Weiss EM
-
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
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November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1002/mgg3.353" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/mgg3.353</a>
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Newborn genetic screening for spinal muscular atrophy in the UK: The views of the general population
Publisher
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Molecular genetics & genomic medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
bloodspot;Ethics;Health Knowledge;newborn genetic screening;social implications;spinal muscular atrophy;Adolescent;Adult;Aged;Attitudes;Family;Female;Genetic Testing utilization;Humans;Infant;Internet;Male;Middle Aged;Muscular Atrophy;Neonatal Screening methods;Neuromuscular Diseases genetics;Newborn;Practice;Risk Assessment methods;Spinal diagnosis genetics;Surveys and Questionnaires;United Kingdom epidemiology
Creator
An entity primarily responsible for making the resource
Boardman FK;Sadler C;Young PJ
Description
An account of the resource
BACKGROUND: Spinal muscular atrophy (SMA) is an inherited neuromuscular disorder and a leading genetic cause of infant death worldwide. However, there is no routine screening program for SMA in the UK. Lack of treatments and the inability of screening tests to accurately predict disease severity are among the key reasons implementation of screening has faltered in the UK. With the recent release of the first therapy for SMA (Nusinersen), calls are being made for a reconsideration of this stance; however, very little is known about the views of the general public. METHODS: An online survey was administered to 232 individuals with no prior relationship with SMA to assess their attitudes toward a newborn screening program for it. Results are compared with previously gathered data on the views of SMA-affected families toward screening. RESULTS: Eighty-four percent of participants were in favor of newborn screening. Key reasons for support were a belief that it would lead to better healthcare and life expectancy for affected infants and facilitate informed decision-making for future pregnancies. Key reasons for nonsupport were a belief in the potential for significant negative impact on the family unit in terms of bonding and stress. CONCLUSIONS: Public acceptability is a key component in the evaluation of any potential screening program in the UK. This study demonstrates that newborn screening for SMA is viewed largely positively by people unfamiliar with the condition. The importance of early identification overrode all other social and ethical concerns about screening for the majority of participants.
Identifier
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<a href="http://doi.org/10.1002/mgg3.353" target="_blank" rel="noreferrer noopener">10.1002/mgg3.353</a>
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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).
2018
Adolescent
Adult
Aged
Attitudes
bloodspot
Boardman FK
Ethics
Family
Female
Genetic Testing utilization
Health Knowledge
Humans
Infant
Internet
Male
Middle Aged
Molecular genetics & genomic medicine
Muscular Atrophy
Neonatal Screening methods
Neuromuscular Diseases genetics
Newborn
newborn genetic screening
November 2018 List
Practice
Risk Assessment methods
Sadler C
social implications
Spinal diagnosis genetics
Spinal Muscular Atrophy
Surveys And Questionnaires
United Kingdom epidemiology
Young PJ