1
40
51
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Title
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July 2023 List
Text
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July List 2023
URL Address
<a href="http://doi.org/10.3390/children9030322" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9030322</a>
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"It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric Palliative Care
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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caregiver support; palliative therapy; parent; pediatric patient; adult; article; Australia; clinical monitoring; controlled study; emotion; emotional support; empowerment; family support; feasibility study; female; hospice care; human; male; Palliative Care; psychosocial care; public health; qualitative research; terminal care; tertiary care center; thematic analysis; volunteer
Creator
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Aoun SM; Stegmann R; Deleuil R; Momber S; Cuddeford L; Phillips MB; Lyon ME; Gill FJ
Description
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Aims: This feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents. Method(s): The CSNAT (Paediatric) intervention consisted of two assessment visits with the paediatric palliative care team, 2-8 weeks apart, comprising conversations about sources for support in a tertiary children hospital in Western Australia (2018-2019). Audio-recorded telephone interviews were conducted with parents, and inductive thematic analysis was undertaken. Result(s): All 28 parents who were involved in the intervention agreed to be interviewed. Five themes summarised their experience: caregiving challenges, perceived gaps and feelings of isolation; the usefulness and practicality of the systematic assessment; emotional responses to self-reflection; feelings of validation and empowerment; and received supports responsive to their needs. Conclusion(s): Parents appreciated the value of this systematic approach in engaging them in conversations about their needs and solutions to address them. While clinical service support was affirmed by parents, they were left wanting in other areas of practical, psychosocial, and emotional support. Palliative care services need to build stronger partnerships with supportive community networks through compassionate communities volunteer models of care to address the non-clinical needs of these families.Copyright © 2022 by the authors. Licensee MDPI, Basel, Switzerland.
Identifier
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<a href="http://doi.org/10.3390/children9030322" target="_blank" rel="noreferrer noopener">10.3390/children9030322</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Adult
Aoun SM
Article
Australia
Caregiver Support
Children
clinical monitoring
Controlled Study
Cuddeford L
Deleuil R
Emotion
emotional support
empowerment
family support
Feasibility Study
Female
Gill FJ
Hospice Care
Human
July List 2023
Lyon ME
Male
Momber S
Palliative Care
Palliative Therapy
Parent
pediatric patient
Phillips MB
psychosocial care
Public Health
Qualitative Research
Stegmann R
Terminal Care
tertiary care center
Thematic Analysis
Volunteer
-
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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February 2024 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.
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February List 2024
URL Address
<a href="http://doi.org/10.1002/14651858.CD014873.pub2" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/14651858.CD014873.pub2</a>
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A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments
Publisher
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Cochrane Database of Systematic Reviews
Date
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2023
Subject
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Humans; Child; child; Adolescent; Quality of Life; human; inflammatory bowel disease; quality of life; Family; chronic pain; social support; family; child parent relation; social work; prognosis; systematic review; sibling; Chronic Pain; Analgesics Opioid; ethnography; Anthropology Cultural; personal experience; cultural anthropology; outcome assessment; health care personnel; wellbeing; health service; disease severity; adolescent; social isolation; headache; analgesia; pediatric patient; abdominal pain; social care; peer group; patient-reported outcome; pain assessment; Review; racism; narcotic analgesic agent; pain severity; fibromyalgia; complex regional pain syndrome; endometriosis; family life; juvenile rheumatoid arthritis; migraine; musculoskeletal pain
Creator
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France E; Uny I; Turley R; Thomson K; Noyes J; Jordan A; Forbat L; Caes L; Silveira Bianchim M
Description
An account of the resource
Background: Chronic non-cancer pain in childhood is widespread, affecting 20% to 35% of children and young people worldwide. For a sizeable number of children, chronic non-cancer pain has considerable negative impacts on their lives and quality of life, and leads to increased use of healthcare services and medication. In many countries, there are few services for managing children’s chronic non-cancer pain, with many services being inadequate. Fourteen Cochrane Reviews assessing the effects of pharmacological, psychological, psychosocial, dietary or physical activity interventions for managing children’s chronic non-cancer pain identified a lack of high-quality evidence to inform pain management. To design and deliver services and interventions that meet the needs of patients and their families, we need to understand how children with chronic non-cancer pain and their families experience pain, their views of services and treatments for chronic pain, and which outcomes are important to them. Objectives: 1. To synthesise qualitative studies that examine the experiences and perceptions of children with chronic non-cancer pain and their families regarding chronic non-cancer pain, treatments and services to inform the design and delivery of health and social care services, interventions and future research. 2. To explore whether our review findings help to explain the results of Cochrane Reviews of intervention effects of treatments for children's chronic non-cancer pain. 3. To determine if programme theories and outcomes of interventions match children and their families’ views of desired treatments and outcomes. 4. To use our findings to inform the selection and design of patient-reported outcome measures for use in chronic non-cancer pain studies and interventions and care provision to children and their families. The review questions are:. 1. How do children with chronic non-cancer pain and their families conceptualise chronic pain?. 2. How do children with chronic non-cancer pain and their families live with chronic pain?. 3. What do children with chronic non-cancer pain and their families think of how health and social care services respond to and manage their child’s chronic pain?. 4. What do children with chronic non-cancer pain and their families conceptualise as ‘good’ chronic pain management and what do they want to achieve from chronic pain management interventions and services?. Search methods: Review strategy: we comprehensively searched 12 bibliographic databases including MEDLINE, CINAHL, PsycInfo and grey literature sources, and conducted supplementary searches in 2020. We updated the database searches in September 2022. Selection criteria: To identify published and unpublished qualitative research with children aged 3 months to 18 years with chronic non-cancer pain and their families focusing on their perceptions, experiences and views of chronic pain, services and treatments. The final inclusion criteria were agreed with a patient and public involvement group of children and young people with chronic non-cancer pain and their families. Data collection and analysis: We conducted a qualitative evidence synthesis using meta-ethnography, a seven-phase, systematic, interpretive, inductive methodology that takes into account the contexts and meanings of the original studies. We assessed the richness of eligible studies and purposively sampled rich studies ensuring they addressed the review questions. Cochrane Qualitative Methods Implementation Group guidance guided sampling. We assessed the methodological limitations of studies using the Critical Appraisal Skills Programme tool. We extracted data on study aims, focus, characteristics and conceptual findings from study reports using NVivo software. We compared these study data to determine how the studies related to one another and grouped studies by pain conditions for synthesis. We used meta-ethnography to synthesise each group of studies separately before synthesising them all together. Analysis and interpretation of studies involved children ith chronic non-cancer pain and their families and has resulted in theory to inform service design and delivery. Sampling, organising studies for synthesis, and analysis and interpretation involved our patient and public involvement group who contributed throughout the conduct of the review. We used the GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach to assess our confidence in each review finding. We used a matrix approach to integrate our findings with existing Cochrane Reviews on treatment effectiveness for children’s chronic non-cancer pain. Main results: We synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Included studies involved 633 participants. GRADE-CERQual assessments of findings were mostly high (n = 21, 58%) or moderate (n = 12, 33%) confidence with three (8%) low or very low confidence. Poorly managed, moderate or severe chronic non-cancer pain had profound adverse impacts on family dynamics and relationships; family members’ emotions, well-being, autonomy and sense of self-identity; parenting strategies; friendships and socialising; children’s education and future employment prospects; and parental employment. Most children and parents understood chronic non-cancer pain as having an underlying biological cause and wanted curative treatment. However, families had difficulties seeking and obtaining support from health services to manage their child’s pain and its impacts. Children and parents felt that healthcare professionals did not always listen to their experiences and expertise, or believe the child's pain. Some families repeatedly visited health services seeking a diagnosis and cure. Over time, some children and families gave up hope of effective treatment. Outcomes measured within trials and Cochrane Reviews of intervention effects did not include some outcomes of importance to children and families, including impacts of pain on the whole family and absence of pain. Cochrane Reviews have mainly neglected a holistic biopsychosocial approach, which specifies the interrelatedness of biological, psychological and social aspects of illness, when selecting outcome measures and considering how chronic pain management interventions work. Authors' conclusions: We had high or moderate confidence in the evidence contributing to most review findings. Further research, especially into families' experiences of treatments and services, could strengthen the evidence for low or very low confidence findings. Future research should also explore families' experiences in low- to middle-income contexts; of pain treatments including opioid use in children, which remains controversial; and of social care services. We need development and testing of family-centred interventions and services acceptable to families. Future trials of children's chronic non-cancer pain interventions should include family-centred outcomes. Copyright © 2023 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/14651858.CD014873.pub2" target="_blank" rel="noreferrer noopener">10.1002/14651858.CD014873.pub2</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).
2023
abdominal pain
Adolescent
Analgesia
Analgesics Opioid
Anthropology Cultural
Caes L
Child
Child Parent Relation
Chronic Pain
Cochrane Database of Systematic Reviews
Complex Regional Pain Syndrome
cultural anthropology
Disease Severity
endometriosis
ethnography
Family
Family Life
February List 2024
Fibromyalgia
Forbat L
France E
Headache
Health Care Personnel
Health Service
Human
Humans
inflammatory bowel disease
Jordan A
juvenile rheumatoid arthritis
migraine
musculoskeletal pain
narcotic analgesic agent
Noyes J
outcome assessment
Pain Assessment
Pain Severity
patient-reported outcome
pediatric patient
Peer Group
Personal Experience
Prognosis
Quality Of Life
racism
Review
Sibling
Silveira Bianchim M
Social Care
Social Isolation
Social Support
Social Work
Systematic Review
Thomson K
Turley R
Uny I
Wellbeing
-
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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December 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
December 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1002/pbc.27455</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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A new kind of language barrier: Examining disparities in medical teams' referrals of palliative care patients to Pediatric psychology
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
United States; death; education; palliative therapy; retrospective study; cancer patient; language; complication; malignant neoplasm; patient referral; conference abstract; medical record review; human; child; female; male; controlled study; adult; pediatric patient; child psychology; biological product; social care; speech
Creator
An entity primarily responsible for making the resource
Schneider N; Steinberg D; Karfunkle B
Description
An account of the resource
Background/Objectives: As cancer care has improved, so has the understanding that children with cancer are at risk for psychological distress. The American Academy of Pediatrics has highlighted the importance of addressing these concerns. Our study aims to identify how cultural and language factors may influence whether psychology is involved in a patient and family's care. Preliminary literature in adult-focused research suggests that a vast majority of those referred to psychology are English speaking. Design/Methods: The medical records of Pediatric patients who died from cancer or its complications over a consecutive 18 month-period were examined via retrospective chart review. Patients' demographic information was collected, along with information about whether their medical team requested a psychology consultation. Details about consultations and subsequent intervention were collected. Results: Eighty-nine charts were reviewed. Patients ranged from age 3 months to 25 years. Data indicated that non-English speaking families were referred to psychology at nearly half the rate of English-speaking families (i.e., 16% of patients as compared to 31% of patients). There did not appear to be any statistically significant differences between the referred and non-referred groups aside from the family's primary language. There was a wide range of when patients were referred (4-3168 days before death). Conclusions: Results indicate that, though the comprehensive biological-psychological-social care of children is widely recognized as important, there is a clear disparity in the services offered to families that speak languages other than English. Further research should be conducted to understand referral barriers and missed opportunities to utilize Pediatric psychology, particularly as hospitals in the United States continue to diversify. Finally, offering providers education about how to identify common psychological concerns, particularly in those hailing from different cultural backgrounds, may be particularly valuable in closing the identified referral gap; our poster will make culturally-informed recommendations for such a training.
Identifier
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<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
2018
Adult
biological product
Cancer Patient
Child
Child Psychology
Complication
conference abstract
Controlled Study
Death
December 2018 List
Education
Female
Human
Karfunkle B
Language
Male
Malignant Neoplasm
Medical Record Review
Palliative Therapy
Patient Referral
Pediatric Blood and Cancer
pediatric patient
Retrospective Study
Schneider N
Social Care
Speech
Steinberg D
United States
-
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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December 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2019 List
URL Address
<a href="http://doi.org/10.1136/bmjpo-2019-000547" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjpo-2019-000547</a>
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Title
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Access to paediatric palliative care in children and adolescents with complex chronic conditions: A retrospective hospital-based study in Brussels, Belgium
Publisher
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BMJ Paediatrics Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adolescent; article; Belgium; cardiovascular disease; child; chronic disease; complex chronic condition; congenital disorder; data base; female; gastrointestinal disease; genetic disorder; groups by age; health care access; hematologic disease; hospital; hospital admission; hospitalized adolescent; hospitalized child; human; Icd-9; immune deficiency; infant; length of stay; major clinical study; male; malignant neoplasm; metabolic disorder; morbidity; neurologic disease; newborn; palliative therapy; patient care; patient referral; pediatric patient; pediatric ward; priority journal; respiratory tract disease; retrospective study; urinary tract disease
Creator
An entity primarily responsible for making the resource
Friedel M; Gilson A; Bouckenaere D; Brichard B; Fonteyne C; Wojcik T; De Clercq E; Guillet A; Mahboub A; Lahaye M; Aujoulat I
Description
An account of the resource
BACKGROUND: Paediatric complex chronic conditions (CCCs) are life-limiting conditions requiring paediatric palliative care, which, in Belgium, is provided through paediatric liaison teams (PLTs). Like the number of children and adolescents with these conditions in Belgium, their referral to PLTs is unknown. OBJECTIVES: The aim of the study was to identify, over a 5-year period (2010-2014), the number of children and adolescents (0-19 years) living with a CCC, and also their referral to PLTs. METHODS: International Classification of Disease codes (ICD-9) corresponding to a CCC, as described by Feudtner et al, and national registration numbers were extracted from the databases of all hospitals (n=8) and PLTs (n=2) based in the Brussels region. Aggregated data and pseudonymised national registration number were transmitted to the research team by a Trusted Third Party (eHealth). Ages and diagnostic categories were calculated using descriptive statistics. RESULTS: Over 5 years (2010-2014) in the Brussels region, a total of 22 721 children/adolescents aged 0-19 years were diagnosed with a CCC. Of this number, 22 533 were identified through hospital registries and 572 through PLT registries. By comparing the registries, we found that of the 22 533 children/adolescents admitted to hospital, only 384 (1.7%) were also referred to a PLT. CONCLUSION: In Belgium, there may be too few referrals of children and adolescents with CCC to PLTs that ensure continuity of care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjpo-2019-000547" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2019-000547</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).
2019
Adolescent
Article
Aujoulat I
Belgium
BMJ Paediatrics Open
Bouckenaere D
Brichard B
Cardiovascular Disease
Child
Chronic Disease
complex chronic condition
congenital disorder
Data Base
De Clercq E
December 2019 List
Female
Fonteyne C
Friedel M
gastrointestinal disease
Genetic Disorder
Gilson A
groups by age
Guillet A
Health Care Access
hematologic disease
Hospital
Hospital Admission
hospitalized adolescent
Hospitalized Child
Human
Icd-9
immune deficiency
Infant
Lahaye M
Length Of Stay
Mahboub A
Major Clinical Study
Male
Malignant Neoplasm
Metabolic Disorder
Morbidity
Neurologic Disease
Newborn
Palliative Therapy
Patient Care
Patient Referral
pediatric patient
pediatric ward
Priority Journal
Respiratory Tract Disease
Retrospective Study
urinary tract disease
Wojcik T
-
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/10.1080/00325481.2018.1512253" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/00325481.2018.1512253</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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Are pediatric patients just short adults? most commonly prescribed drugs for pediatric hospice patients
Publisher
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Postgraduate 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
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
An entity primarily responsible for making the resource
Sera L;Morgan J;McPherson ML
Description
An account of the resource
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
An unambiguous reference to the resource within a given context
<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
-
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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June 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2022 List
URL Address
<a href="https://www.sciencedirect.com/science/article/pii/S0885392423004475?via%3Dihub">https://www.sciencedirect.com/science/article/pii/S0885392423004475?via%3Dihub</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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Are we on the same page? Exploring pediatric patients' involvement with advance care planning
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
cystic fibrosis; child; adult; female; human; male; caregiver; palliative therapy; neurology; outcome assessment; young adult; review; Medline; advance care planning; systematic review; emotion; randomized controlled trial (topic); acquired immune deficiency syndrome; adolescent; Advance Care Planning; patient participation; pediatric patient
Creator
An entity primarily responsible for making the resource
Aasen ERHV; oSovik ML; Stordal K; Lee 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).
Identifier
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<a href="https://www.sciencedirect.com/science/article/pii/S0885392423004475?via%3Dihub">10.1016/j.jpainsymman.2023.04.003</a>
2023
Aasen ERHV
acquired immune deficiency syndrome
Adolescent
Adult
Advance Care Planning
Caregiver
Child
Cystic Fibrosis
Emotion
Female
Human
Journal of Pain and Symptom Management
June 2022 List
Lee A
Male
Medline
Neurology
oSovik ML
outcome assessment
Palliative Therapy
Patient Participation
pediatric patient
Randomized Controlled Trial (topic)
Review
Stordal K
Systematic Review
Young Adult
-
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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December 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December List 2022
URL Address
<a href="http://doi.org/10.1002/pbc.29952" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.29952</a>
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Title
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At the End of Life: Pediatric Palliative Care Can Make a Difference in Caring for the Child and Family
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
agitation; anxiety; cancer patient; care behavior; child; conference abstract; controlled study; demography; dyspnea; fear; female; hospital mortality; human; intensive care unit; irritability; leukemia; major clinical study; male; middle income country; pain; palliative therapy; pediatric patient; quasi experimental study; retrospective study; school child; seizure; skill; social needs; terminal care; ward
Creator
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Cuervo M; Garcia X; Molina K; Claros A; Bolanos J; Alvarez T; Cleves D
Description
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Background and Aims: WHO defines pediatric palliative care as the active total care of the child's body, mind and spirit, which also involves giving support to the family, the aim of this study is to describe the endof-life care of children with cancer during the end-of-life period who receive general palliative care or pediatric palliative care in low- and middle-income countries. Method(s): We conducted a retrospective quasi-experimental study between January 2013 and December 2020 with deceased pediatric cancer patients. Demographic and clinical variables were collected to describe end-of-life care received before (2013-2017) by general palliative care team and after (2018-2020) the creation of a pediatric palliative care team Results: A total of 180 pediatric patients were evaluated at the end of life (100 between 2013-2017 and 80 between 2018-2020). The median age was 11 years, regardless of sex. Half of the patients had a diagnosis of leukemia (49.8%), 52.7% receive palliative treatment for their oncological condition. Regarding symptoms, 72 hours before death, pain treatment was documented for 52.2% of the patients. Other signs and symptoms, such as dyspnea, seizures, agitation, and irritability, were present, with no differences between groups; however, it was noted that during PPC interventions, there was a significant reduction in anxiety or fear of end of life, we observed a greater number of interventions by the psychosocial professionals and also there was an increase in the number of patients who died in the hospital ward and a decrease in the number of patients who died in the intensive care unit. Conclusion(s): Pediatric palliative care requires special knowledge and skills, the provision of PPC for children with cancer allows patients and their families to receive support that alleviates the physical, emotional and social needs that arise from a life-limiting illness and finally receive high-quality end-of-life care.
Identifier
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<a href="http://doi.org/10.1002/pbc.29952" target="_blank" rel="noreferrer noopener">10.1002/pbc.29952</a>
Rights
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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).
2022
Agitation
Alvarez T
anxiety
Bolanos J
Cancer Patient
care behavior
Child
Claros A
Cleves D
conference abstract
Controlled Study
Cuervo M
December List 2022
Demography
Dyspnea
Fear
Female
Garcia X
Hospital Mortality
Human
Intensive Care Unit
Irritability
Leukemia
Major Clinical Study
Male
middle income country
Molina K
Pain
Palliative Therapy
Pediatric Blood and Cancer
pediatric patient
quasi experimental study
Retrospective Study
School Child
Seizure
Skill
social needs
Terminal Care
ward
-
Dublin Core
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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/10.1097/01.pcc.0000537853.70857.ca" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537853.70857.ca</a>
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Title
A name given to the resource
Attitudes of the four groups of population toward end-of-life care of their child: A nationwide survey
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
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
An entity primarily responsible for making the resource
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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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
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
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 5 - Low Resource Setting 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
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1007/s00467-022-05525-1" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00467-022-05525-1</a>
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Title
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Clinical and genetic characteristics of Tunisian children with infantile nephropathic cystinosis
Publisher
An entity responsible for making the resource available
Pediatric Nephrology
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Child; child; article; controlled study; female; human; male; retrospective study; palliative therapy; preschool child; clinical article; information processing; Only Child; gene mutation; gene; infant; pediatric patient; clinical feature; Fanconi renotubular syndrome; gene deletion; heterozygosity; homozygosity; molecular fingerprinting; prenatal diagnosis; cystinosis/di [Diagnosis]; cystinosis/dt [Drug Therapy]; genetic trait; infantile nephropathic cystinosis/di [Diagnosis]; infantile nephropathic cystinosis/dt [Drug Therapy]; kidney disease/di [Diagnosis]; kidney disease/dt [Drug Therapy]; Tunisian; bicarbonate/dt [Drug Therapy]; bicarbonate/pv [Special Situation for Pharmacovigilance]; calcitriol/dt [Drug Therapy]; calcitriol/pv [Special Situation for Pharmacovigilance]; citrate potassium/dt [Drug Therapy]; citrate potassium/pv [Special Situation for Pharmacovigilance]; CTNS gene; cystine/ec [Endogenous Compound]; exon; founder mutation; genetic analysis; hypothyroidism/dt [Drug Therapy]; mercaptamine/dt [Drug Therapy]; mercaptamine/pv [Special Situation for Pharmacovigilance]; molecular diagnosis; RNA splicing; Sanger sequencing; thyroid hormone/dt [Drug Therapy]; thyroid hormone/pv [Special Situation for Pharmacovigilance]
Creator
An entity primarily responsible for making the resource
El Younsi M; Trabelsi M; Ben Youssef S; Ouertani I; Hammi Y; Achour A; Maazoul F; Kharrat M; Gargah T; M'Rad R
Description
An account of the resource
Background: Nephropathic cystinosis is an autosomal recessive disease caused by a mutation in the CTNS gene which encodes cystinosin, a lysosomal cystine transporter. The spectrum of mutations in the CTNS gene is not well defined in the North African population. Here, we investigated twelve patients with nephropathic cystinosis belonging to eight Tunisian families in order to analyze the clinical and genetic characteristics of Tunisian children with infantile nephropathic cystinosis. Methods: Clinical data were collected retrospectively. Molecular analysis of the CTNS gene was performed by Sanger sequencing. Results: We describe a new splicing mutation c.971-1G > C in the homozygous state in 6/12 patients which seems to be a founder mutation. The reported deletion of 23nt c.771_793 Del (p.Gly258Serfs*30) was detected in a homozygous state in one patient and in a heterozygous compound state with the c.971-1G > C mutation in 3/12 patients. Two of 12 patients have a deletion of exons 4 and 5 of the CTNS gene. None of our patients had the most common 57-kb deletion. Conclusions: The mutational spectrum in the Tunisian population is different from previously described populations. Thus, a molecular diagnostic strategy must be implemented in Tunisia, by targeting as a priority the common mutations described in this country. Such a strategy will allow a cost-effective diagnosis confirmation as well as early administration of treatment with oral cysteamine. A higher resolution version of the Graphical abstract is available as Supplementary information.
Identifier
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<a href="http://doi.org/10.1007/s00467-022-05525-1" target="_blank" rel="noreferrer noopener">10.1007/s00467-022-05525-1</a>
Rights
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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).
2023
2023 SE5 - Low Resource Setting
Achour A
Article
Ben Youssef S
bicarbonate/dt [Drug Therapy]
bicarbonate/pv [Special Situation for Pharmacovigilance]
calcitriol/dt [Drug Therapy]
calcitriol/pv [Special Situation for Pharmacovigilance]
Child
citrate potassium/dt [Drug Therapy]
citrate potassium/pv [Special Situation for Pharmacovigilance]
Clinical Article
Clinical Feature
Controlled Study
CTNS gene
cystine/ec [Endogenous Compound]
cystinosis/di [Diagnosis]
cystinosis/dt [Drug Therapy]
El Younsi M
exon
Fanconi renotubular syndrome
Female
founder mutation
Gargah T
gene
Gene Deletion
gene mutation
genetic analysis
genetic trait
Hammi Y
heterozygosity
homozygosity
Human
hypothyroidism/dt [Drug Therapy]
Infant
infantile nephropathic cystinosis/di [Diagnosis]
infantile nephropathic cystinosis/dt [Drug Therapy]
Information Processing
Kharrat M
kidney disease/di [Diagnosis]
kidney disease/dt [Drug Therapy]
M'Rad R
Maazoul F
Male
mercaptamine/dt [Drug Therapy]
mercaptamine/pv [Special Situation for Pharmacovigilance]
molecular diagnosis
molecular fingerprinting
Only Child
Ouertani I
Palliative Therapy
Pediatric Nephrology
pediatric patient
Prenatal Diagnosis
Preschool Child
Retrospective Study
RNA splicing
Sanger sequencing
thyroid hormone/dt [Drug Therapy]
thyroid hormone/pv [Special Situation for Pharmacovigilance]
Trabelsi M
Tunisian
-
Dublin Core
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Title
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2019 Oncology 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
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1016/j.radonc.2019.05.017" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.radonc.2019.05.017</a>
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Title
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Clinical practice and outcomes of palliative radiation therapy in pediatric oncology patients: An international comparison of experiences from two distinct countries and health care systems
Publisher
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Radiotherapy and Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
anorexia; article; bradycardia; brain metastasis; cancer palliative therapy; cancer radiotherapy; cancer survival; child; childhood cancer/rt [Radiotherapy]; clinical outcome; clinical practice; cohort analysis; follow up; human; leukemia/rt [Radiotherapy]; lymphoma/rt [Radiotherapy]; major clinical study; mucosa inflammation; neuroblastoma/rt [Radiotherapy]; opiate/dt [Drug Therapy]; opiate/pv [Special Situation for Pharmacovigilance]; osteosarcoma/rt [Radiotherapy]; pain/dt [Drug Therapy]; Palliative radiation therapy; Palliative therapy; pediatric patient; Pediatric radiation therapy; preschool child; priority journal; radiation dermatitis; radiation dose fractionation; radiation induced neoplasm; rectum hemorrhage; treatment outcome; treatment response; tumor growth
Creator
An entity primarily responsible for making the resource
Rao A D; Figueiredo M L S; Yegya-Raman N; Sehgal S; Chen Q; Alcorn S R; Chen M J; Ladra M; Villar R; Terezakis S A
Description
An account of the resource
Background and purpose: This study describes clinical outcomes of palliative radiation therapy (RT)for children treated in distinct health-care environments-the US where there is advanced integration of palliative resources and Brazil, a country in the process of developing provisions for pediatric palliative care. Methods and materials: Palliative RT cases of pediatric oncology patients aged <=21-years from 2010 to 2016 in two Brazil-based and one US-based (Johns Hopkins Hospital, JHH)academic centers were reviewed in this study. Result(s): Eighty-eight pediatric patients were treated to 131 lesions with palliative RT. Forty-nine patients from the JHH cohort comprised 84 cases and 39 patients from the Brazil cohort comprised 46 cases. The most common indication for palliative RT was pain (55% overall, 39% Brazil, 63% JHH). Sixty-seven percent of patients experienced a complete (CR)or partial response (PR)to palliative RT, 12% reported stable symptoms (SS), and 22% reported progressive symptoms (PS). The median survival from the end of palliative RT was 3.6 months (95% confidence interval (CI), 2.3-4.8 months). When treated with palliative RT for pain, 83% of patients experience CR/PR, facilitating reduction or discontinuation of opiates in 46% of these patients. Conclusion(s): Despite different practices, the clinical results using palliative RT for pediatric patients treated in two unique healthcare environments demonstrated it is an effective tool for pediatric oncology patients across systems. Copyright © 2019 Elsevier B.V.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.radonc.2019.05.017" target="_blank" rel="noreferrer noopener">10.1016/j.radonc.2019.05.017</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).
2019
Alcorn S R
Anorexia
Article
bradycardia
Brain Metastasis
Cancer Palliative Therapy
cancer radiotherapy
Cancer Survival
Chen M J
Chen Q
Child
Childhood Cancer/rt [radiotherapy]
Clinical Outcome
Clinical Practice
Cohort Analysis
Figueiredo M L S
Follow Up
Human
Ladra M
leukemia/rt [Radiotherapy]
lymphoma/rt [Radiotherapy]
Major Clinical Study
mucosa inflammation
neuroblastoma/rt [Radiotherapy]
Oncology 2019 List
Opiate/dt [drug Therapy]
opiate/pv [Special Situation for Pharmacovigilance]
osteosarcoma/rt [Radiotherapy]
Pain/dt [drug Therapy]
Palliative radiation therapy
Palliative Therapy
pediatric patient
Pediatric radiation therapy
Preschool Child
Priority Journal
radiation dermatitis
Radiation Dose Fractionation
radiation induced neoplasm
Radiotherapy and Oncology
Rao A D
rectum hemorrhage
Sehgal S
Terezakis S A
Treatment Outcome
treatment response
tumor growth
Villar R
Yegya-Raman N
-
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
2023 Special Edition 3 - Oncology 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.3389/fonc.2023.1118992" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fonc.2023.1118992</a>
Dublin Core
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Title
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Communication and information sharing with pediatric patients including refugees with advanced cancer, their caregivers, and health care professionals in Jordan: a qualitative study
Publisher
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Frontiers in Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; adult; article; female; human; male; palliative therapy; Information Dissemination; caregiver; health care personnel; human experiment; health care policy; cross-sectional study; adolescent; Jordan; qualitative research; attitude to health; semi structured interview; pediatric patient; Jordanian; implicit bias; advanced cancer/dm [Disease Management]; doctor patient relationship; medical information; refugee; health care practice; myelodysplastic syndrome; myeloproliferative disorder; reticuloendothelial tumor
Creator
An entity primarily responsible for making the resource
Alarjeh G; Boufkhed S; Alrjoub W; Guo P; Yurdusen S; Ahmed F; Abdal-Rahman M; Alajarmeh S; Alnassan A; Al-Awady S; Kutluk T; Harding R; Shamieh O
Description
An account of the resource
Introduction: Effective communication in pediatric palliative cancer care is an important aspect of practice to enhance patient- and family-centered care, and to optimize decision-making. However, little is known about communication preferences practices from the perspectives of children, caregivers and their health care professionals (HCPs) in the Middle Eastern region. Furthermore, involving children in research is crucial but limited. This study aimed to describe the communication and information-sharing preferences and practices of children with advanced cancer, their caregivers, and health care professionals in Jordan. Method(s): A qualitative cross-sectional study was conducted using semi-structured face to face interviews with three groups of stakeholders (children, caregivers and HCPs). Purposive sampling recruited a diverse sample from inpatient and outpatient settings at a tertiary cancer center in Jordan. Procedures were in line with the Consolidated criteria for reporting qualitative research (COREQ) reporting guidelines. Verbatim transcripts were thematically analyzed. Finding(s): Fifty-two stakeholders participated: 43 Jordanian and 9 refugees (25 children, 15 caregivers and 12 HCPs). Four major themes emerged: 1) Hiding information between the three stakeholders which includes parents who hide the information from their sick children and ask the HCPs to do so to protect the child from distressful emotions and children who hide their suffering from their parents to protect them from being sad; 2) Communication and sharing of clinical versus non-clinical information; 3) Preferred communication styles such as use of a companionate approach by acknowledging patients and caregivers' suffering, building a trustful relationship, proactive information sharing, considering child age and medical status, parents as facilitators in communication, and patients' and caregivers' health literacy; 4) Communication and information sharing with refugees where they had dialect issues, which hindered effective communication. Some refugees had unrealistically high expectations regarding their child's care and prognosis, which posed challenges to communication with staff. Discussion(s): The novel findings of this study should inform better child-centered practices and better engage them in their care decisions. This study has demonstrated children's ability to engage in primary research and to express preferences, and parents' ability to share views on this sensitive topic.Copyright © 2023 Alarjeh, Boufkhed, Alrjoub, Guo, Yurdusen, Ahmed, Abdal-Rahman, Alajarmeh, Alnassan, Al-Awady, Kutluk, Harding and Shamieh.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3389/fonc.2023.1118992" target="_blank" rel="noreferrer noopener">10.3389/fonc.2023.1118992</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).
2023
2023 SE3 - Oncology
Abdal-Rahman M
Adolescent
Adult
advanced cancer/dm [Disease Management]
Ahmed F
Al-Awady S
Alajarmeh S
Alarjeh G
Alnassan A
Alrjoub W
Article
Attitude To Health
Boufkhed S
Caregiver
Child
Cross-sectional Study
doctor patient relationship
Female
Frontiers in Oncology
Guo P
Harding R
Health Care Personnel
Health Care Policy
health care practice
Human
Human Experiment
implicit bias
Information Dissemination
Jordan
Jordanian
Kutluk T
Male
Medical Information
myelodysplastic syndrome
myeloproliferative disorder
Palliative Therapy
pediatric patient
Qualitative Research
refugee
reticuloendothelial tumor
Semi Structured Interview
Shamieh O
Yurdusen S
-
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
2019 Oncology 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
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1002/pbc.27617" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.27617</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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Content review of pediatric ethics consultations at a cancer center
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
article; cancer center; child; childhood cancer; clinical article; ethics; female; human; invasive procedure; male; pediatric patient; Pediatrics; physician; resuscitation; retrospective study; risk benefit analysis; terminal care
Creator
An entity primarily responsible for making the resource
Winter M C; Friedman D N; McCabe M S; Voigt L P
Description
An account of the resource
Background/objectives: Ethical challenges in pediatric oncology arise at every stage of illness. However, there are sparse data on the content of and reason for ethics consultations in the field. We sought to evaluate the content and characteristics of ethics consultations in pediatric patients at a cancer center. Design/methods: We retrospectively identified ethics consultations performed for patients diagnosed with cancer at <=21 years of age who were treated in the Department of Pediatrics from 2007 to 2017. Using an established coding schema, two independent reviewers analyzed the content of ethics consultation notes and identified core ethical issues and relevant contextual issues. Demographic, clinical, and consultation-specific data were also collected.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.27617" target="_blank" rel="noreferrer noopener">10.1002/pbc.27617</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).
2019
Article
cancer center
Child
Childhood Cancer
Clinical Article
Ethics
Female
Friedman D N
Human
invasive procedure
Male
McCabe M S
Oncology 2019 List
Pediatric Blood and Cancer
pediatric patient
Pediatrics
Physician
Resuscitation
Retrospective Study
Risk Benefit Analysis
Terminal Care
Voigt L P
Winter M C
-
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
July 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0276" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1089/jpm.2018.0276</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Costs of Care and Location of Death in Community-Based Pediatric Palliative Care
Publisher
An entity responsible for making the resource available
Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adolescent; adult; article; cardiovascular disease/dm [Disease Management]; child; child death; child health care; child health insurance; childhood cancer/dm [Disease Management]; childhood disease/dm [Disease Management]; cohort analysis; community care; community-based; congenital disorder/dm [Disease Management]; cost; dying; family income; female; groups by age; health care cost; health maintenance organization; home care; human; major clinical study; male; medicaid; neuromuscular disease/dm [Disease Management]; newborn disease/dm [Disease Management]; palliative therapy; pediatric palliative care; pediatric patient; prematurity/dm [Disease Management]; race difference; retrospective study
Creator
An entity primarily responsible for making the resource
Chirico J; Donnelly J P; Gupton A; Cromwell P; Miller M; Dawson C; Korones D N
Description
An account of the resource
Background: Children with complex chronic conditions (CCCs) are dying at home with increased frequency, yet the number of studies on the financial feasibility of community-based pediatric palliative care is limited. Objective(s): The objectives of this study were to (1) describe characteristics of patients who died in a community-based palliative care program and (2) evaluate cost differences associated with participant characteristics and location of death. Design(s): A retrospective cohort analysis of administrative and electronic medical record data was employed. Setting/Subjects: Children enrolled in the community-based pediatric palliative care program, CompassionNet, who died between 2008 and 2015 were included (N = 224). Measurements: Demographic data, program expense, and paid claims were extracted from an insurance provider database and clinical data from the electronic medical record. Result(s): Sixty-six (29%) of the children were \textless1 year old at death; 80 (36%) were 1-9 years old, and 78 (35%) were 10-22 years old. Malignancy was the most common primary CCC diagnosis for the 158 children/adolescents (n = 89, 56%), whereas neuromuscular conditions (n = 20, 30%) were most frequent for infants. Death at home occurred 21% of the time for infants, 48% for children of ages 1-9 years, and 46% for children of ages 10-22 years. The mean total cost in the final year of life for pediatric patients was significantly related to location of death, a malignancy diagnosis, and participation in Medicaid. The largest estimated difference was between costs of care associated with death at home ($121,111) versus death in the hospital ($200,050). Conclusion(s): Multidisciplinary community-based pediatric palliative care teams provide the opportunity for a home death to be realized as desired. Significant cost differences associated with location of death may support program replication and sustainability. Copyright © 2019, Mary Ann Liebert, Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2018.0276" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0276</a>
2019
Adolescent
Adult
Article
cardiovascular disease/dm [Disease Management]
Child
Child Death
Child Health Care
child health insurance
childhood cancer/dm [Disease Management]
childhood disease/dm [Disease Management]
Chirico J
Cohort Analysis
community care
community-based
congenital disorder/dm [Disease Management]
Cost
Cromwell P
Dawson C
Donnelly J P
Dying
family income
Female
groups by age
Gupton A
Health Care Cost
health maintenance organization
Home Care
Human
Journal of Palliative Medicine
July 2019 List
Korones D N
Major Clinical Study
Male
Medicaid
Miller M
neuromuscular disease/dm [Disease Management]
newborn disease/dm [Disease Management]
Palliative Therapy
Pediatric Palliative Care
pediatric patient
Prematurity/dm [disease Management]
Race Difference
Retrospective Study
-
Dublin Core
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Title
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2019 Oncology 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
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.27713</a>
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Title
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Defining palliative opportunities in pediatric patients with bone and soft tissue tumors
Publisher
An entity responsible for making the resource available
Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adolescent; bone marrow; bone tumor; cancer patient; cancer recurrence; child; conference abstract; controlled study; death; disease exacerbation; do not resuscitate order; female; hospice; hospital admission; human; intensive care; major clinical study; male; palliative therapy; pediatric patient; phase 1 clinical trial; relapse; retrospective study; soft tissue tumor; solid malignant neoplasm; statistics
Creator
An entity primarily responsible for making the resource
Ebelhar J; Allen K; Wasilewski-Masker K; Brock K
Description
An account of the resource
Background: Pediatric patients with cancer have many opportunities for increased primary or specialty palliative care (PC). This is particularly true for patients with solid tumors who often have higher symptom burden and worse outcomes. However, how many opportunities, when they occur, and if these opportunities are correlated with disease or demographic variables are unknown. Objective(s): To define palliative opportunities within pediatric cancer, and explore howthese occur in patients with solid tumors. Design/Method: A priori, nine palliative opportunity categories were defined (disease progression and relapse, hospital admission for symptoms or social concerns, intensive care or marrow transplant admission, phase 1 trial or hospice enrollment, DNR status). A single-center retrospective review was conducted on patients aged 0-17 years at diagnosis with bone/soft tissue tumors who died from 1/1/12- 11/30/17. Demographic, disease, and treatment data was collected, and descriptive statistics were performed. Timing of opportunities was evaluated over quartiles from diagnosis to death. Result(s): Patients (n = 60) had a mean of nine (SD = 4) palliative opportunities. Number or type of opportunities did not differ by primary diagnosis or demographic variables. PC consulted on 18 patients (30%) a median of 14.0 months (IQR 25.0) after diagnosis, and 2.6 months (IQR 11.5) prior to death. Likelihood of PC consult did not differ by diagnosis or total opportunities. The opportunities that preceded PC consultwere progression/relapse (9/18), escalated hospital level of care (4/18), symptom admission (3/18), and end-oflife concerns (2/18). Hospicewas involved for 72% of patients. The majority of opportunities occurred in the last quartile of the disease course (median 5.0, IQR 5.0). Conclusion(s): Patients with solid tumors incur many events warranting psychosocial or palliative support, which increase toward the end-of-life. Mean reported opportunities is likely a minimum due to stringent collection methods. No palliative opportunity or demographic variable was associated with PC consultation. Defining palliative opportunities provides an additional framework to assess the disease trajectory for patients suffering from oncologic diseases. Additional work is needed to further refine what qualifies as a palliative opportunity, how to fully capture opportunities, and how those may differ across different cancers.
Identifier
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<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</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).
2019
Adolescent
Allen K
bone marrow
bone tumor
Brock K
Cancer Patient
Cancer Recurrence
Child
conference abstract
Controlled Study
Death
disease exacerbation
do not resuscitate order
Ebelhar J
Female
Hospice
Hospital Admission
Human
Intensive Care
Major Clinical Study
Male
Oncology 2019 List
Palliative Therapy
Pediatric Blood and Cancer
pediatric patient
phase 1 clinical trial
relapse
Retrospective Study
soft tissue tumor
solid malignant neoplasm
Statistics
Wasilewski-Masker K
-
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
March 2020 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
March 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/144/2_MeetingAbstract/442">https://pediatrics.aappublications.org/content/144/2_MeetingAbstract/442</a>
Dublin Core
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Title
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Development of an innovative program to improve provision of palliative and hospice care to children and families in the community: The story of QoLA Kids
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
cancer patient; cancer prognosis; catchment; child; childhood cancer; conference abstract; controlled study; counselor; distress syndrome; female; Hospice Care; hospital personnel; human; magnet; major clinical study; male; nurse practitioner; outpatient; palliative therapy; patient referral; pediatric hospital; pediatric patient; prognosis; program impact; quality of life; registered nurse; social worker
Creator
An entity primarily responsible for making the resource
Kiefer A C; Kaye E C; Blazin L J; Baker J N
Description
An account of the resource
Background: Approximately 500,000 children in the United States suffer from serious illnesses each year and 50,000 die annually. Hospice and palliative care services are known to be beneficial for many children with serious illnesses and their families; however, hospice services only reach about 10% of eligible children who die in the United States, with the majority of pediatric patients receiving care through adult hospice organizations. Program Design: The Quality of Life for All (QoLA) Kids program, established in August 2012, is an outpatient, community-based pediatric palliative care and hospice program that strives to enhance quality of life for pediatric patients and families, provide care coordination across multiple settings, mitigate physical, psychosocial, and spiritual distress, ensure a comfortable and peaceful death in the patient's preferred setting, and support bereaved family members and hospital staff. The program represents a partnership between two MAGNET-certified pediatric hospitals and a local home health and hospice agency. QoLA Kids comprises an extensive interdisciplinary team including physicians, nurse practitioners, registered nurses, medical social workers, spiritual counselors, child life specialists, and administrative support staff. Patients are enrolled on either the palliative care or hospice arm of the program, with flexibility to transition easily between arms as clinical status and goals of care evolve. Eligibility for the hospice arm necessitates an expected prognosis of 6 months or less left to live. Program Impact: Since programmatic inception nearly 6 years ago, QoLA Kids has served a total of 330 children and families in the local catchment area. Approximately 41% of patients (n=135) were enrolled on the palliative arm, with the remaining 59% enrolled on hospice (n=195). Between 2012-2017, the mean number of days from enrollment to death was 142 days for patients on the hospice arm (n=76) and 288 for patients on the palliative care arm (n=5). The percentage of patients with malignancies who received palliative care prior to death increased from 71% to 97% within 2 years following program implementation. Conclusions/Future Directions: QoLA Kids is an innovative program that facilitates the provision of palliative care and hospice services and resources to children with serious illness and their families in the community. Through this program, children and families have been able to access palliative care services in their community well before the end of life. After program initiation, an increase in the number of palliative care consults was also seen within the pediatric oncology patient population suggesting that the program may provide an incentive for referral to palliative care. Further investigation is needed to identify optimal metrics for ascertaining the physical and psychosocial benefits from this innovative program.
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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).
2019
Baker J N
Blazin L J
Cancer Patient
Cancer Prognosis
catchment
Child
Childhood Cancer
conference abstract
Controlled Study
Counselor
Distress Syndrome
Female
Hospice Care
hospital personnel
Human
Kaye E C
Kiefer A C
magnet
Major Clinical Study
Male
March 2020 List
Nurse Practitioner
Outpatient
Palliative Therapy
Patient Referral
Pediatric Hospital
pediatric patient
Pediatrics
Prognosis
program impact
Quality Of Life
registered nurse
Social Worker
-
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
September 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2019.0111" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2019.0111</a>
Dublin Core
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Title
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Differences in Advance Care Planning and Circumstances of Death for Pediatric Patients Who Do and Do Not Receive Palliative Care Consults: A Single-Center Retrospective Review of All Pediatric Deaths from 2012 to 2016
Publisher
An entity responsible for making the resource available
Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
article; child; female; human; major clinical study; male; controlled study; hospice; medical record review; do not resuscitate order; palliative therapy; advance care planning; life sustaining treatment; pediatric patient; physician; retrospective study; time of death; statistics; tertiary care center
Creator
An entity primarily responsible for making the resource
Harmoney K; Mobley EM; Gilbertson-White S; Brogden NK; Benson RJ
Description
An account of the resource
Background: Growing evidence suggests that pediatric palliative care (PPC) teams influence the care received by children and young adults with chronic, life-limiting illnesses. Little is known about how PPC involvement affects advance care planning (ACP) and circumstances of death in pediatric populations with a wide range of diagnoses. Objective: To determine the relationship between PPC involvement, ACP, and circumstances of death for pediatric patients. Design: A retrospective chart review of 558 pediatric patients who died between January 1, 2012 and December 31, 2016 was conducted. Descriptive statistics were used to characterize the sample. A multivariable logistic regression was used to obtain associations between PPC involvement and ACP. Setting: Large, multidisciplinary tertiary care center in a rural state. Measurements: Data abstracted for each patient included the following: demographic information, diagnosis, location of primary unit, hospice involvement, goals of care (GOC), code status, Physician Orders for Life-Sustaining Treatment (POLST) completion, and location of death. Results: Patients with PPC involvement were more likely to have had ACP addressed before death. After adjusting for covariates in the model, patients with PPC were more likely to have their GOC documented (odds ratio [OR] = 96.93), completion of POLST (OR = 24.06), do-not-resuscitate code status (OR = 7.71), and hospice involvement at the time of death (OR = 11.70) compared with those who did not receive PPC. Conclusions: Pediatric patients are more likely to have ACP addressed if they have PPC involvement. Patients with chronic complex conditions are most likely to receive palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2019.0111" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0111</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).
2019
Advance Care Planning
Article
Benson RJ
Brogden NK
Child
Controlled Study
do not resuscitate order
Female
Gilbertson-White S
Harmoney K
Hospice
Human
Journal of Palliative Medicine
Life Sustaining Treatment
Major Clinical Study
Male
Medical Record Review
Mobley EM
Palliative Therapy
pediatric patient
Physician
Retrospective Study
September 2019 List
Statistics
tertiary care center
time of death
-
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
May 2020 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
May 2020 List
URL Address
<a href="http://doi.org/10.1089/jpm.2019.0299" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2019.0299</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Emergencies in Pediatric Palliative Care: A Survey of Ambulance Officers to Understand the Interface between Families and Ambulance Services
Publisher
An entity responsible for making the resource available
Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
ambulance; article; attitude; child; comfort; controlled study; counseling; e-mail; emergency health service; human; medical documentation; Palliative therapy; pediatric patient; perception; Queensland; resuscitation; writing
Creator
An entity primarily responsible for making the resource
Mott C; Herbert A; Malcolm K; Sansone H; Agar M
Description
An account of the resource
Background: Pediatric palliative care occurs across contexts through the child's illness trajectory, including within the child or young person's community. Interactions with the ambulance service may occur with a child's deterioration, crisis, or when needing transfer, but there is little research on this interaction. Aim: To explore the experiences and attitudes of ambulance officers in managing pediatric patients with palliative care needs. Design: A targeted e-mail survey was sent exploring perceptions of the involvement with these patients including exposure, comfort, resuscitation topics, and supports available. Setting/Participants: Participants were Queensland ambulance officers known to have had an interaction with one of the last 50 pediatric palliative care referrals across Queensland. Results: Twenty-two survey responses were received. Most of the palliative group accessed ambulances for the 13-month study period. Most ambulance officers did not easily identify patients as receiving palliative care. Many participants felt these cases were challenging, confidence levels varied, and staff counselling services were felt to be relevant. Ambulance officers were most likely to use correspondence provided by the family from their usual team as a guide for emergency management. Half of the participants felt patients receiving pediatric palliative care should have a "not for resuscitation" order. Respondents suggested officer support could be improved through increased patient documentation and promotion of existing officer supports. Conclusions: These findings demonstrate challenges experienced by ambulance officers and suggest practical ways in which pediatric palliative care services can better support emergency services.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2019.0299" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0299</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).
2020
Agar M
ambulance
Article
Attitude
Child
Comfort
Controlled Study
Counseling
E-mail
Emergency Health Service
Herbert A
Human
Journal of Palliative Medicine
Malcolm K
May 2020 List
medical documentation
Mott C
Palliative Therapy
pediatric patient
Perception
Queensland
Resuscitation
Sansone H
writing
-
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
2018 Developing World 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
Developing World 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1002/pbc.27455</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
End of life care experience at the peadiatic oncology unit at the uganda cancer institute: What role can oncology nurses play?
Publisher
An entity responsible for making the resource available
Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
quality of life; dying; adolescent; pediatrics; advanced cancer; cancer patient; cancer survival; cancer chemotherapy; cancer diagnosis; mortality rate; coordination; conference abstract; human; child; female; male; adult; diagnosis; terminal care; clinical article; palliative therapy; pediatric patient; multidisciplinary team; oncology nurse; clinician
Creator
An entity primarily responsible for making the resource
Mulyowa I
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
2018
Adolescent
Adult
Advanced Cancer
Cancer Chemotherapy
Cancer Diagnosis
Cancer Patient
Cancer Survival
Child
Clinical Article
Clinician
conference abstract
Coordination
Developing World 2018 List
Diagnosis
Dying
Female
Human
Male
Mortality Rate
Multidisciplinary team
Mulyowa I
oncology nurse
Palliative Therapy
Pediatric Blood and Cancer
pediatric patient
Pediatrics
Quality Of Life
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
A name given to the resource
July 2023 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
July List 2023
URL Address
<a href="http://doi.org/10.3390/children9030445" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9030445</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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Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases
Publisher
An entity responsible for making the resource available
Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
advance care planning; attitude to illness; caregiver; family centered care; parent; parental attitude; pediatric patient; psychosocial care; rare disease; adult; Advance Care Planning; article; body movement; child care; cohort analysis; collaborative care team; content analysis; conversation; disease burden; family decision making; feasibility study; female; human; human relation; palliative therapy; qualitative analysis; social connectedness; videorecording
Creator
An entity primarily responsible for making the resource
Fratantoni K; Livingston J; Schellinger SE; Aoun SM; Lyon ME
Description
An account of the resource
Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent's understanding of their child's illness, goals of care, and what mattered most to their child from the parent's perspective. Six families completed a feasibility study of the FAmily CEntered (FACE)-Rare pACP intervention. Qualitative content analysis was performed on transcripts of videotaped responses to the Respecting Choices Next Steps pACP Conversation facilitated conversation guide about the goals of care. Codes were grouped into themes, with direct participant quotations representing the themes. Five themes emerged: getting out and moving freely; feeling included and engaged; managing symptoms and disease burden; coordinating care among many care team members; and managing today and planning for the future. In the context of pACP, families reported that what mattered most to their children included the freedom of movement and human connection and engagement, while parents strived to be effective caregivers and advocates for their child with a rare and severely disabling disease.Copyright © 2022 by the authors. Licensee MDPI, Basel, Switzerland.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3390/children9030445" target="_blank" rel="noreferrer noopener">10.3390/children9030445</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Adult
Advance Care Planning
Aoun SM
Article
attitude to illness
body movement
Caregiver
Child Care
Children
Cohort Analysis
collaborative care team
Content Analysis
Conversation
Disease Burden
Family Centered Care
Family Decision Making
Feasibility Study
Female
Fratantoni K
Human
Human Relation
July List 2023
Livingston J
Lyon ME
Palliative Therapy
Parent
Parental Attitude
pediatric patient
psychosocial care
Qualitative Analysis
Rare Disease
Schellinger SE
social connectedness
videorecording
-
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
2019 Developing World 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
Developing World 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.414" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2018.10.414</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Frequency and Clinical Characteristics Associated With Pediatric Deaths In a Tertiary Hospital in a Developing Country - Opportunities for Pediatric Palliative Care
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
antibiotic therapy; artificial ventilation; brain death; cause of death; child; clinical feature; comfort; conference abstract; controlled study; demography; developing country; diagnosis; drug withdrawal; female; health care quality; hospital patient; human; human tissue; inotropism; life sustaining treatment; major clinical study; male; medical record; neonatal intensive care unit; newborn; palliative therapy; pediatric patient; resuscitation; retrospective study; sedation; statistical analysis; terminal care; tertiary care center
Creator
An entity primarily responsible for making the resource
Cuervo Suarez M I; Munoz M; Garcia X
Description
An account of the resource
Background: Colombia does not have knowledge about the clinical characteristics of pediatric deaths caused by life-threatening conditions and/or serious illness within the hospital setting.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.414" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.414</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
antibiotic therapy
Artificial Ventilation
Brain Death
Cause Of Death
Child
Clinical Feature
Comfort
conference abstract
Controlled Study
Cuervo Suarez M I
Demography
developing country
Developing World 2019 List
Diagnosis
Drug Withdrawal
Female
Garcia X
Health Care Quality
Hospital Patient
Human
Human Tissue
inotropism
Journal of Pain and Symptom Management
Life Sustaining Treatment
Major Clinical Study
Male
Medical Record
Munoz M
Neonatal Intensive Care Unit
Newborn
Palliative Therapy
pediatric patient
Resuscitation
Retrospective Study
Sedation
statistical analysis
Terminal Care
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
2020 Oncology 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
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1002/pbc.27993" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.27993</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents
Publisher
An entity responsible for making the resource available
Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
newborn; social support; child; human; adult; female; major clinical study; male; retrospective study; article; priority journal; aged; Bereavement; adolescent; terminal care; quality of life; emotion; Parent; psychologist; social worker; content analysis; interpersonal communication; quantitative analysis; time of death; infant; caregiver; pediatric patient; nurse; support group; thematic analysis; psycho-oncology; open ended questionnaire; childhood cancer/dm [Disease Management]; pediatric oncologist; health care need; social media; worker
Creator
An entity primarily responsible for making the resource
Wiener L; Tager J; Mack J; Battles H; Bedoya S Z; Gerhardt C A
Description
An account of the resource
Background: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.27993" target="_blank" rel="noreferrer noopener">10.1002/pbc.27993</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).
2020
Adolescent
Adult
Aged
Article
Battles H
Bedoya S Z
Bereavement
Caregiver
Child
childhood cancer/dm [Disease Management]
Content Analysis
Emotion
Female
Gerhardt C A
health care need
Human
Infant
Interpersonal Communication
Mack J
Major Clinical Study
Male
Newborn
Nurse
Oncology 2020 List
open ended questionnaire
Parent
Pediatric Blood and Cancer
pediatric oncologist
pediatric patient
Priority Journal
Psycho-Oncology
Psychologist
Quality Of Life
quantitative analysis
Retrospective Study
social media
Social Support
Social Worker
support group
Tager J
Terminal Care
Thematic Analysis
time of death
Wiener L
worker
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1016/j.pecinn.2023.100173" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.pecinn.2023.100173</a>
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Title
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Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation
Publisher
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PEC Innovation
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; article; cohort analysis; female; human; male; quality of life; palliative therapy; Ventilators, Mechanical; tracheostomy; content analysis; pilot study; respiratory failure; adolescent; decision making; intensive care unit; semi structured interview; pediatric patient; length of stay; counseling; artificial ventilation; home ventilation; Question Prompt List
Creator
An entity primarily responsible for making the resource
Boss RD; Vo HH; Jabre NA; Shepard J; Mercer A; McDermott A; Lanier CL; Ding Y; Wilfond BS; Henderson CM
Description
An account of the resource
Objective: To pilot feasibility and acceptability of HomeVENT, a systematic approach to family-clinician decision-making about pediatric home ventilation. Methods: Parents and clinicians of children facing home ventilation decisions were enrolled at 3 centers using a pre/post cohort design. Family interventions included: 1) a website describing the experiences of families who previously chose for and against home ventilation 2) a Question Prompt List (QPL); 3) in-depth interviews exploring home life and values. Clinician HomeVENT intervention included a structured team meeting reviewing treatment options in light of the family's home life and values. All participants were interviewed one month after the decision. Results: We enrolled 30 families and 34 clinicians. Most Usual Care (14/15) but fewer Intervention (10/15) families elected for home ventilation. Families reported the website helped them consider different treatment options, the QPL promoted discussion within the family and with the team, and the interview helped them realize how home ventilation might change their daily life. Clinicians reported the team meeting helped clarify prognosis and prioritize treatment options. Conclusions: The HomeVENT pilot was feasible and acceptable. Innovation: This systematic approach to pediatric home ventilation decisions prioritizes family values and is a novel method to increase the rigor of shared decision-making in a rushed clinical environment.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pecinn.2023.100173" target="_blank" rel="noreferrer noopener">10.1016/j.pecinn.2023.100173</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).
2023
Adolescent
Article
Artificial Ventilation
August List 2025
Boss RD
Child
Cohort Analysis
Content Analysis
Counseling
Decision Making
Ding Y
Female
Henderson CM
home ventilation
Human
Intensive Care Unit
Jabre NA
Lanier CL
Length Of Stay
Male
McDermott A
Mercer A
Palliative Therapy
PEC Innovation
pediatric patient
Pilot Study
Quality Of Life
Question Prompt List
respiratory failure
Semi Structured Interview
Shepard J
Tracheostomy
Ventilators, Mechanical
Vo HH
Wilfond BS
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 5 - Low Resource Setting 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
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1055/s-0043-1771407" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1055/s-0043-1771407</a>
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Title
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Hospice Care in India-A Pediatrician's Perspective
Publisher
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South Asian Journal of Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Hospice Care; article; human; palliative therapy; Hospices; India; pediatrician; pediatric patient; malignant neoplasm; hospice care; terminally ill patient; India
Creator
An entity primarily responsible for making the resource
Nair M; Ghoshal A
Description
An account of the resource
Hospice care plays a vital role in providing compassionate and holistic support to terminally ill patients and their families. While hospice care has gained recognition and acceptance globally, its implementation and understanding in the context of pediatric patients in India remain limited. This article aims to explore the pediatrician's perspective on hospice care in India, highlighting the challenges and opportunities for enhancing end-of-life care for children. By understanding the unique needs of pediatric patients and their families, healthcare professionals can contribute to the development and improvement in hospice care services across the country. Copyright © 2023. MedIntel Services Pvt Ltd. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1055/s-0043-1771407" target="_blank" rel="noreferrer noopener">10.1055/s-0043-1771407</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).
2023
2023 SE5 - Low Resource Setting
Article
Child
Ghoshal A
Hospice Care
Hospices
Human
India
Malignant Neoplasm
Nair M
Palliative Therapy
pediatric patient
Pediatrician
South Asian Journal of Cancer
terminally Ill Patient
-
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
October 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2019 List
URL Address
<a href="http://doi.org/10.20344/amp.10437" target="_blank" rel="noreferrer noopener">http://doi.org/10.20344/amp.10437</a>
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Title
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Hospital inpatient use in mainland Portugal by children with complex chronic conditions (2011 - 2015). [Portuguese]
Publisher
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Acta Medica Portuguesa
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
death; Child; adolescent; article; child; female; human; male; palliative therapy; pediatric patient; retrospective study; controlled study; Hospitalization; national health service; length of stay; Palliative care; newborn; hospitalization; nonparametric test; mortality; cancer radiotherapy; developed country; hospital patient; needs assessment; Needs assessment; outpatient; Portugal; radiotherapy
Creator
An entity primarily responsible for making the resource
Lacerda A F; Oliveira G; Cancelinha C; Lopes S
Description
An account of the resource
Introduction: Due to epidemiological change, interest in complex chronic conditions has been increasing within the pediatric health system. As such, we aim to evaluate hospital inpatient care in the National Health Service (mainland Portugal) by pediatric patients (0 - 17 years) with complex chronic conditions. Material(s) and Method(s): Observational longitudinal retrospective epidemiological study using anonymized administrative data. We selected hospitalizations within the pediatric age limit, 2011 - 2015; healthy newborns and radiotherapy outpatients were excluded. A descriptive analysis of the admissions with complex chronic conditions was analysed by number of complex chronic conditions categories and by complex chronic conditions categories. Non-parametric tests were applied to length of stay, expense, and mortality. Result(s): Out of 419 927 admissions, 64 918 (15.5%) contained at least one complex chronic conditions code. These admissions due to complex chronic conditions represented 29.8% of hospital days, 39.4% of expense and 87.2% of deaths. Compared to those without complex chronic conditions, expense was double (median 1467 vs 745) and mortality 40 times higher (2.4% vs 0.06%). Of these, 46% were planned (no complex chronic conditions 23.2%); 64.8% occurred in group III - IV hospitals (no complex chronic conditions 27.1%). Malignant was the most frequent category (23.0%); neonatal had the highest median length of stay (12 days, 6 - 41), median expense (3568,929 - 24 602), and number of deaths (43.5% of total). Discussion(s): As in other developed countries where the number of pediatric admissions is decreasing, in mainland Portugal we found an increase in the proportion of complex chronic conditions admissions, which are longer, costlier and deadlier (trends intensified in the presence of two or more complex chronic conditions categories). Conclusion(s): Complex chronic conditions are relevant in the activity and costs regarding pediatric hospitalizations in mainland Portugal. Recognizing this and integrating pediatric palliative care from the moment of diagnosis are essential to promote appropriate hospital use, through the development of effective and sustainable alternatives that meet the needs of children, families, and healthcare professionals. Copyright © 2019, CELOM. All rights reserved.
Identifier
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<a href="http://doi.org/10.20344/amp.10437" target="_blank" rel="noreferrer noopener">10.20344/amp.10437</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).
2019
Acta Médica Portuguesa
Adolescent
Article
Cancelinha C
cancer radiotherapy
Child
Controlled Study
Death
developed country
Female
Hospital Patient
Hospitalization
Human
Lacerda A F
Length Of Stay
Lopes S
Male
Mortality
national health service
Needs Assessment
Newborn
nonparametric test
October 2019 List
Oliveira G
Outpatient
Palliative Care
Palliative Therapy
pediatric patient
Portugal
Radiotherapy
Retrospective Study
-
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
April 2023 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
April List 2023
URL Address
<a href="http://doi.org/10.1111/jpc.16354" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jpc.16354</a>
Dublin Core
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Title
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How Do Hospitalised Children Die? The Context of Death and End-Of-Life Decision-Making
Publisher
An entity responsible for making the resource available
Journal of Paediatrics and Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
intensive care unit; Child; child; Decision Making; article; controlled study; female; human; major clinical study; male; resuscitation; retrospective study; palliative therapy; observational study; advance care planning; documentation; Only Child; nervous system; life sustaining treatment; cardiovascular disease; respiratory tract disease; infant; drug withdrawal; demographics; medical record; hospitalized child; pediatric patient; decision making; childhood mortality; treatment withdrawal
Creator
An entity primarily responsible for making the resource
Serrano-Pejenaute I; Carmona-Nunez A; Zorrilla-Sarriegui A; Martin-Irazabal G; Lopez-Bayon J; Sanchez-Echaniz J; Astigarraga I
Identifier
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<a href="http://doi.org/10.1111/jpc.16354" target="_blank" rel="noreferrer noopener">10.1111/jpc.16354</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).
2023
Advance Care Planning
April List 2023
Article
Astigarraga I
Cardiovascular Disease
Carmona-Nunez A
Child
Childhood Mortality
Controlled Study
Decision Making
Demographics
Documentation
Drug Withdrawal
Female
Hospitalized Child
Human
Infant
Intensive Care Unit
Journal of Paediatrics and Child Health
Life Sustaining Treatment
Lopez-Bayon J
Major Clinical Study
Male
Martin-Irazabal G
Medical Record
Nervous System
Observational Study
Only Child
Palliative Therapy
pediatric patient
Respiratory Tract Disease
Resuscitation
Retrospective Study
Sanchez-Echaniz J
Serrano-Pejenaute I
Treatment Withdrawal
Zorrilla-Sarriegui 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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2023 Special Edition 3 - Oncology 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1089/jpm.2023.0091" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0091</a>
Dublin Core
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Title
A name given to the resource
Impact of Animal-Assisted Interaction on Anxiety in Children With Advanced Cancer and Their Caregivers
Publisher
An entity responsible for making the resource available
Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Child; Animals; Anxiety; article; controlled study; female; human; male; Caregivers; patient care; palliative therapy; advanced cancer; caregiver; cancer patient; cancer recurrence; Only Child; nonhuman; dog; animal experiment; animal model; feasibility study; anxiety; pediatric patient; comparative effectiveness; Animal Shells; anticipation; refractory disease; State Trait Anxiety Inventory
Creator
An entity primarily responsible for making the resource
Mahoney AB; Akard TF; Cowfer BA; Dietrich MS; Newton JL; Gilmer MJ
Description
An account of the resource
Background: Pediatric patients with advanced cancer and their caregivers have unique psychosocial needs. Anxiety often worsens throughout treatment for both patients and parents, and, if undertreated, can cause suffering. Animal-assisted interaction (AAI) incorporates animals into patient care in a structured manner for the purpose of therapeutic benefit. Objective(s): To evaluate feasibility of incorporating AAI into patient care and to assess AAI effectiveness in decreasing patient and caregiver anxiety in pediatric patients with advanced cancer, defined by relapsed or refractory disease. Design(s): Randomized controlled study. Setting/Subjects: Participants were children (n=19) and parents (n=21) who were randomized to AAI group or usual care (UC) group. Measures: Participants completed weekly measures to assess anxiety, including the 20-question State-Trait Anxiety Inventory (STAI). Result(s): Our results demonstrated feasibility of the use of AAI in children with advanced cancer. While they did not reveal a significant difference in anxiety scores over the four sessions in either group, parents randomized to the AAI group had lower STAI State subscores at initial visit in comparison to the UC group. The difference in initial STAI State anxiety scores for caregivers may indicate a positive effect of AAI in reducing anxiety surrounding appointments through anticipation of seeing a therapy dog. Conclusion(s): Further research is needed to determine the effectiveness of AAI in pediatric patients with advanced cancer and their caregivers, but results are promising that participation in AAI may lessen caregiver anxiety. Clinical Trial Registration Number is: NCT03765099.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2023.0091" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0091</a>
Rights
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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).
2023
2023 SE3 - Oncology
Advanced Cancer
Akard TF
Animal Experiment
Animal Model
Animal Shells
Animals
Anticipation
anxiety
Article
Cancer Patient
Cancer Recurrence
Caregiver
Caregivers
Child
Comparative Effectiveness
Controlled Study
Cowfer BA
Dietrich MS
Dog
Feasibility Study
Female
Gilmer MJ
Human
Journal of Palliative Medicine
Mahoney AB
Male
Newton JL
Nonhuman
Only Child
Palliative Therapy
Patient Care
pediatric patient
refractory disease
State Trait Anxiety Inventory
-
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
2018 Developing World 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
Developing World 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1002/pbc.27455</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Integrating palliative care into the care of paediatric patients at a referral hospital in ghana
Publisher
An entity responsible for making the resource available
Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
pain assessment; oncology ward; education; palliative therapy; communication skill; health care personnel; child health; middle income country; pediatric ward; patient referral; analgesic agent; conference abstract; psychosocial care; human; child; controlled study; pediatric patient; doctor nurse relation; teaching hospital; Ghana
Creator
An entity primarily responsible for making the resource
Paintsil V; Ossei-Sekyere B; Osei-Tutu L; Asiamah C
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
2018
Analgesic Agent
Asiamah C
Child
Child Health
Communication Skill
conference abstract
Controlled Study
Developing World 2018 List
doctor nurse relation
Education
Ghana
Health Care Personnel
Human
middle income country
oncology ward
Osei-Tutu L
Ossei-Sekyere B
Pain Assessment
Paintsil V
Palliative Therapy
Patient Referral
Pediatric Blood and Cancer
pediatric patient
pediatric ward
psychosocial care
teaching hospital
-
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
May 2020 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
May 2020 List
URL Address
<a href="http://doi.org/10.1177/1049909120912674" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909120912674</a>
Dublin Core
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Title
A name given to the resource
Inter-Rater Reliability of the Phase of Illness Tool in Pediatric Palliative Care
Publisher
An entity responsible for making the resource available
The American journal of hospice & palliative care.
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
adult; article; child; cohort analysis; controlled study; feasibility study; female; human; interrater reliability; major clinical study; male; Palliative therapy; pediatric patient; prospective study; reproducibility; uncertainty
Creator
An entity primarily responsible for making the resource
Burke K; Coombes L H; Petruckevitch A; Anderson A K
Description
An account of the resource
BACKGROUND: Phase of Illness is used to describe the stages of a patient's illness in the palliative care setting. Categorization is based on individual needs, family circumstances, and the adequacy of a care plan. Substantial (κ = .67) and moderate (κ = .52) inter-rater reliability is demonstrated when categorizing adults; however, there is a lack of similar studies in pediatrics. OBJECTIVE: To test the inter-rater reliability of health-care professionals when assigning pediatric palliative care patients to a Phase of Illness. Furthermore, to obtain user views on phase definitions, ease of assignment, feasibility and acceptability of use. METHOD: A prospective cohort study in which up to 9 health-care professionals' independently allocated 80 pediatric patients to a Phase of Illness and reported on their experiences. This study took place between June and November 2017. RESULTS: Professionals achieved a moderate level of agreement (κ = 0.50). Kappa values per phase were as follows: stable = 0.63 (substantial), unstable = 0.26 (fair), deteriorating = 0.45 (moderate), and dying = 0.43 (moderate). For the majority of allocations, professionals report that the phase definitions described patients very well (76.1%), and they found it easy to assign patients (73.5%). However, the unstable phase caused the most uncertainty. CONCLUSION: The results of this study suggest Phase of Illness is a moderately reliable, acceptable, and feasible tool for use in pediatric palliative care. Current results are similar to those found in some adult studies. However, in a quarter of cases, users report some uncertainty in the application of the tool, and further study is warranted to explore whether suggested refinements improve its psychometric properties.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909120912674" target="_blank" rel="noreferrer noopener">10.1177/1049909120912674</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).
2020
Adult
Anderson A K
Article
Burke K
Child
Cohort Analysis
Controlled Study
Coombes L H
Feasibility Study
Female
Human
interrater reliability
Major Clinical Study
Male
May 2020 List
Palliative Therapy
pediatric patient
Petruckevitch A
Prospective Study
Reproducibility
The American journal of hospice & palliative care.
Uncertainty
-
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
2018 Oncology 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
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1007/s00520-018-4254-6" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1007/s00520-018-4254-6</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Japanese physicians' attitudes toward end-of-life discussion with pediatric patients with cancer
Publisher
An entity responsible for making the resource available
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
adolescent; death; palliative therapy; cancer patient; anxiety; multicenter study; malignant neoplasm; pediatrician; human; article; child; controlled study; adult; questionnaire; pediatric patient
Creator
An entity primarily responsible for making the resource
Yoshida S; Ogawa C; Shimizu K; Kobayashi M; Inoguchi H; Oshima Y; Dotani C; Nakahara R; Kato M
Description
An account of the resource
PURPOSE: We explored pediatricians' practices and attitudes concerning end-of-life discussions (EOLds) with pediatric patients with cancer, and identified the determinants of pediatricians' positive attitude toward having EOLds with pediatric patients. METHODS: A multicenter questionnaire survey was conducted with 127 pediatricians specializing in the treatment of pediatric cancer. RESULTS: Forty-two percent of participants reported that EOLds should be held with the young group of children (6-9 years old), 68% with the middle group (10-15 years old), and 93% with the old group (16-18 years old). Meanwhile, 6, 20, and 35% of participants answered that they "always" or "usually" discussed the incurability of the disease with the young, middle, and old groups, respectively; for the patient's imminent death, the rates were 2, 11, and 24%. Pediatricians' attitude that they "should have" EOLds with the young group was predicted by more clinical experience (odds ratio [OR] 1.077; p=0.007), more confidence in addressing children's anxiety after EOLd (OR 1.756; p=0.050), weaker belief in the demand for EOLd (OR 0.456; p=0.015), weaker belief in the necessity of the EOLd for children to enjoy their time until death (OR, 0.506; p=0.021), and weaker belief in the importance of maintaining a good relationship with the parents (OR 0.381; p=0.025). CONCLUSIONS: While pediatricians nearly reached consensus on EOLds for the old group, EOLds with the young group remain a controversial subject. While pediatricians who supported EOLds believed in their effectiveness or necessity, those who were against EOLds tended to consider the benefits of not engaging in them.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/%2010.1007/s00520-018-4254-6" target="_blank" rel="noreferrer noopener">10.1007/s00520-018-4254-6</a>
2018
Adolescent
Adult
anxiety
Article
Cancer Patient
Child
Controlled Study
Death
Dotani C
Human
Inoguchi H
Kato M
Kobayashi M
Malignant Neoplasm
Multicenter Study
Nakahara R
Ogawa C
Oncology 2018 List
Oshima Y
Palliative Therapy
pediatric patient
Pediatrician
Questionnaire
Shimizu K
Supportive Care In Cancer : Official Journal Of The Multinational Association Of Supportive Care In Cancer
Yoshida S
-
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
2019 Oncology List
Text
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Oncology 2019 List
URL Address
<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.27713</a>
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Medication utilization for symptom management by pediatric inpatients with cancer at end-of-life
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Pediatric Blood and Cancer
Date
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2019
Subject
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adult; anxiety; benzodiazepine; Black person; cancer patient; child; childhood cancer; conference abstract; controlled study; death; decision making; do not resuscitate order; drug therapy; ethnicity; female; gender; hospital patient; hospitalization; human; length of stay; major clinical study; male; manager; medicaid; multicenter study; nausea; opiate; pain; patient history of bone marrow transplantation; pediatric patient; recipient; retrospective study; solid malignant neoplasm; tumor diagnosis; university hospital; young adult
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Prozora S; Shabanova V; Massaro S; Davidoff A
Description
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Background: Despite advances in pediatric oncology care, most children that die each year from cancer report significant suffering at end-of-life. Commonly reported symptoms include pain, anxiety, and nausea. More than half of pediatric cancer patients die in the hospital, yet little is known about medication use for symptom management during their terminal hospitalizations. Objective(s): To describe the utilization patterns of opiates, benzodiazepines, and gastrointestinal (GI) related medications for commonly reported symptoms by pediatric cancer inpatients during their last week of life. Design/Method: This retrospective study uses data from the Vizient clinical database/resource manager (CDB/RMTM), a compilation of clinical and resource use data from over 100 academic medical centers and their affiliates nationally. Pediatric patients (ages 0-21) with a diagnosis of malignancy who died during an inpatient hospitalization from 2010-2017 were included (n = 1,659). Patients admitted for less than 1 week were excluded. Individual medications were categorized as opiate, benzodiazepine, or GI-related. Exposure to each group was ascertained for all patients at two time points: one week and one day prior to death. Factors associated with the time of exposure were examined using generalized estimating equations. Results were summarized using adjusted odds ratios (aOR). Result(s): Opiate exposure increased from 76% one week prior to death to 82% one day prior (aOR 1.5; p<0.001). Similarly, use of benzodiazepines also increased from 53% to 66% (aOR 1.3; p = 0.024). Receipt of GI medications decreased from 92% to 89% (aOR 0.7; p = 0.001). Opiates and benzodiazepines were more likely to be administered to patients with solid tumor diagnosis (aOR 1.4, 1.2), history of bone marrow transplant (BMT) (aOR 1.3, 1.4), and longer length of stay (LOS), respectively. Benzodiazepine utilization was lower among blacks (aOR 0.6) and Medicaid recipients (aOR 0.8). GI medications were also more likely to be received by patientswith history ofBMT(aOR 1.8) and longer LOS; additionally, exposure was higher in those age 5-9 (aOR 1.9) and of Asian race (aOR 2.5). Reported aORs are significant at p<0.05. Gender, ethnicity, study year, location in ICU, and DNR status did not significantly affect exposure in any category. Conclusion(s): Not all patients are receiving medications typically used for symptom management in the week preceding death. Opiate and benzodiazepine exposure increased while GI medication use decreased. Earlier and more consistent intervention with these medications may reduce patient suffering. Furthermore, variability in utilization associated with patient characteristics suggests differences in symptomatology and provider/family decision-making warranting further study.
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<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</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).
2019
Adult
anxiety
Benzodiazepine
Black person
Cancer Patient
Child
Childhood Cancer
conference abstract
Controlled Study
Davidoff A
Death
Decision Making
do not resuscitate order
Drug Therapy
Ethnicity
Female
Gender
Hospital Patient
Hospitalization
Human
Length Of Stay
Major Clinical Study
Male
manager
Massaro S
Medicaid
Multicenter Study
Nausea
Oncology 2019 List
Opiate
Pain
patient history of bone marrow transplantation
Pediatric Blood and Cancer
pediatric patient
Prozora S
Recipient
Retrospective Study
Shabanova V
solid malignant neoplasm
tumor diagnosis
University Hospital
Young Adult
-
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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.2018.0203" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0203</a>
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Title
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Mindful Movement: Tai Chi, Gentle Yoga, and Qi Gong for Hospitalized Pediatric Palliative Care Patients and Family Members
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Journal of Palliative Medicine
Date
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2018
Subject
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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
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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
-
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Title
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November 2023 List
Text
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Citation List Month
November List 2023
URL Address
<a href="http://doi.org/10.1111/apa.16901" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.16901</a>
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Title
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More qualitative research is needed to unpack the complexities of resuscitation decisions for preterm infants
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Acta Paediatrica
Date
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2023
Subject
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Infant; human; palliative therapy; gestational age; medical decision making; practice guideline; Infant Premature; qualitative research; prematurity; pediatric patient; resuscitation; letter
Creator
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Cavolo A; Gastmans C
Description
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We read with interest Sriraman et al's (2023)1 response to our article ‘Resuscitation thresholds were seen as guidance by Belgian neonatologists and other relevant factors were included in decision-making’.2 We appreciate that other institutions use an integrative approach to resuscitation decisions for extremely premature infants, one that takes into proper account other prognostic factors as well as parents' opinion. We also find it alarming that so many neonatologists have negative attitudes towards resuscitation of infants at 22 and 23 weeks. We agree that it is acceptable to advise palliative care at these gestational ages as mortality and morbidity remain high, but parents should be involved in the decision-making and they should be allowed to opt for resuscitation. Physicians' negative attitudes might hinder true shared decision-making. In this regard, Sriraman et al indirectly identify another underlying issue related to our understanding of resuscitation decisions for premature infants. We have plenty of studies investigating physicians' attitudes towards resuscitation of these infants. However, the vast majority of empirical research on this topic is quantitative in nature.3 Quantitative studies are well suited to elicit general trends, in this case, whether on average physicians prefer to resuscitate at 22 and 23 weeks, but they are ill-suited to uncover the complexities behind such trend. In other terms, quantitative methods provide a valuable description of a certain phenomenon, but they cannot explain why things are the way they are. Applied to the context of resuscitation decisions for preterm infants, the lack of qualitative studies means that we know that physicians prefer palliative care at the lowest gestational ages, but we do not know why. On top of that, there is also little research on how physicians make resuscitation decisions in practice, meaning that we also do not know to what extent attitudes and practice correspond. As Sriraman et al pointed out we need to understand whether the fact that physicians prefer not to resuscitate at the lowest gestational ages means that they refuse all resuscitation requests. We also need to understand what factors influence these decisions. This knowledge is not only necessary to better understand this complex and ethically challenging decision-making, but it is also necessary to understand how to improve this decision-making. It can also offer important insight to draft guidelines that can better guide parents and healthcare providers through this process. Hence, we welcome the research that Sriraman's team is planning and we are looking forward to the results.
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<a href="http://doi.org/10.1111/apa.16901" target="_blank" rel="noreferrer noopener">10.1111/apa.16901</a>
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2023
Acta Paediatrica, International Journal of Paediatrics
Cavolo A
Gastmans C
Gestational Age
Human
Infant
Infant Premature
Letter
Medical Decision Making
November List 2037
Palliative Therapy
pediatric patient
Practice Guideline
Prematurity
Qualitative Research
Resuscitation
-
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Title
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March 2020 List
Text
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March 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.241" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.241</a>
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Title
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National Institute of Nursing Research and MedlinePlus Team Up to Offer a Palliative Care Text Campaign (QI632)
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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adult; child; conference abstract; e-mail; human; mental health; national health organization; nursing research; palliative therapy; pediatric patient; transcription initiation; videorecording; wellbeing
Creator
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Burroughs A; Lemon A; Coppess S; Miller J
Description
An account of the resource
Objectives: * Apply the principles of plain language to deliver easy-to-understand, evidence-based palliative care information to those with serious illnesses and their families. * Utilize common forms of telecommunications (text messaging and email) to reach English- and Spanish-speaking patients. Background Research has shown that patients who receive palliative care report improvement in pain, nausea, and shortness of breath; communication with their healthcare providers and family members; and emotional support. Aim Statement To increase awareness of palliative care and its benefits for those living with serious illnesses and their families. Methods From February 2018 to February 2019, the National Institute of Nursing Research (NINR) and the National Library of Medicine's MedlinePlus® ran a text message campaign about palliative care. Messages included information for adult and pediatric patients and their families. The campaign also ran in Spanish from February to August 2018. Subscribers received one text message per week. About a month into the campaign, a weekly e-mail option was added. Results 3,143 subscribers signed up for the English text messages, and 944 signed up for the Spanish campaign. An additional 8,004 subscribers signed up for English e-mails, and 9,252 subscribers signed up for Spanish e-mails. The 56 links shared generated 16,039 clicks to NINR and MedlinePlus® content. The average engagement rate of a message was 1%, or only 1% of subscribers clicked the link of any message. The most popular messages were about mental health/emotional wellbeing and new research. Conclusions and Implications A successful campaign is determined by the number of people reached, increased visitors to linked content, attrition, and engagement. The growth was steady and the campaign was successful in gaining new subscribers. Attrition was low; fewer than 10 people unsubscribed. Overall, this campaign was successful in reach, but engagement was low. Implications for practice A future campaign should: a.Include an e-mail option from the beginning to reach a wider audience. b.Focus on engaging content. Create action-based content that elicits a response from subscribers. c.Link only to mobile-friendly pages, not PDFs and videos, since many subscribers are accessing content from mobile devices.
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.241" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.241</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).
2020
Adult
Burroughs A
Child
conference abstract
Coppess S
E-mail
Human
Journal of Pain and Symptom Management
Lemon A
March 2020 List
Mental Health
Miller J
national health organization
Nursing Research
Palliative Therapy
pediatric patient
transcription initiation
videorecording
Wellbeing
-
Dublin Core
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Title
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November 2023 List
Text
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Citation List Month
November List 2023
URL Address
<a href="http://doi.org/10.2174/1871530323666230914114425" target="_blank" rel="noreferrer noopener"> http://doi.org/10.2174/1871530323666230914114425</a>
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Title
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Paediatric Palliative Care in a Reference Centre of Inherited Metabolic Diseases
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Endocrine, Metabolic and Immune Disorders - Drug Targets
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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child; Palliative Care; article; cohort analysis; female; hospital admission; human; major clinical study; male; quality of life; outpatient; palliative therapy; Metabolic Diseases; school child; patient referral; noninvasive ventilation; surgery; daily life activity; gastrostomy; metabolic disorder; pediatric patient; home visit; neurologic disease; demography; disorders of mitochondrial functions; disorders of peroxisomal functions; lysosome; peroxisome; systemic disease
Creator
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Saraiva BM; Santos S; Ferreira AC; Paiva M
Description
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INTRODUCTION: Paediatric palliative care (PPC) has a significant role in improving the quality of life of children with life-limiting or life-threatening illnesses, diminishing symptom burden, and providing holistic support to patients and families. Inherited metabolic diseases (IMD) are a group of heterogeneous diseases that often present with severe neurologic impairment, needing lifelong care and challenging symptom management. OBJECTIVE(S): Our aim was to characterize the cohort of patients with IMD followed by the paediatric palliative care team (PPCT) and to describe the provision of care provided. METHOD(S): The descriptive analysis of demographic, clinical, and care delivery data of a cohort of paediatric patients was carried out with a confirmed diagnosis of IMD, followed in a Reference Centre, in the care of PPCT between 2018 and 2023. RESULT(S): Thirteen (10%) of a total of 134 patients in the care of PPCT had a confirmed diagnosis of an IMD: 6 mitochondrial, 3 peroxisomal, 3 lysosomal, and 1 pterin metabolism disorder. The median age at referral was 9 years (0-18), the median duration of care was 2 years [2-4], median number of home visits in the last year was 2 [1-4], and median number of outpatient consults was 4 [2 -8]. Twelve patients (92%) had no autonomy in their activities of daily living. Neurologic (100%), gastrointestinal (92%), and respiratory (69%) symptoms were the main focus of care. All patients were polymedicated (5 or more different drugs). Nine (69%) had percutaneous gastrostomy and 2 (15%) had noninvasive ventilation. Median hospital admissions before and after starting care by PPCT were 4 and 1. Moreover, three patients died and one was at home. CONCLUSION(S): Mitochondrial, lysosomal, and peroxisomal disorders are complex multisystemic diseases that very often have no treatment intended to cure. These patients have a heavy symptom burden and frequent intercurrences. Addressing these symptoms is challenging, but PPC has proven to reduce hospital admissions with consequent improvement in quality of life. In the future, PPC should be available for all children and families with life-threatening conditions.Copyright© Bentham Science Publishers; For any queries, please email at epub@benthamscience.net.
Identifier
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<a href="http://doi.org/10.2174/1871530323666230914114425" target="_blank" rel="noreferrer noopener">10.2174/1871530323666230914114425</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).
2023
Article
Child
Cohort Analysis
daily life activity
Demography
disorders of mitochondrial functions
disorders of peroxisomal functions
Endocrine, metabolic & immune disorders drug targets
Female
Ferreira AC
Gastrostomy
Home Visit
Hospital Admission
Human
lysosome
Major Clinical Study
Male
Metabolic Diseases
Metabolic Disorder
Neurologic Disease
Noninvasive Ventilation
November List 2028
Outpatient
Paiva M
Palliative Care
Palliative Therapy
Patient Referral
pediatric patient
peroxisome
Quality Of Life
Santos S
Saraiva BM
School Child
Surgery
systemic disease
-
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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/10.1097/01.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
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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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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
-
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Title
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2019 Oncology List
Text
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Citation List Month
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1002/pbc.28003" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.28003</a>
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Title
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Palliative radiotherapy for pediatric patients: Parental perceptions of indication, intent, and outcomes
Publisher
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Pediatric Blood and Cancer
Date
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2020
Subject
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analgesia; article; child; clinical article; comfort; controlled study; expectation; female; human; male; palliative therapy; pediatric patient; perception; prospective study; quality of life; questionnaire; radiation oncology; radiotherapy; side effect
Creator
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Lee B K; Boyle P J; Zaslowe-Dude C; Wolfe J; Marcus K J
Description
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Objectives: Palliative radiation therapy (pRT) is often used to improve quality of life for pediatric patients. Though palliative doses are generally lower than those for cure, pRT may still introduce undesirable effects. The decision to pursue additional therapy for a child may be challenging and depends on parents' knowledge and expectations. The goal of this study was to explore parental perceptions of pRT.
Identifier
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<a href="http://doi.org/10.1002/pbc.28003" target="_blank" rel="noreferrer noopener">10.1002/pbc.28003</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).
2020
Analgesia
Article
Boyle P J
Child
Clinical Article
Comfort
Controlled Study
Expectation
Female
Human
Lee B K
Male
Marcus K J
Oncology 2019 List
Palliative Therapy
Pediatric Blood and Cancer
pediatric patient
Perception
Prospective Study
Quality Of Life
Questionnaire
radiation oncology
Radiotherapy
Side Effect
Wolfe J
Zaslowe-Dude C
-
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Title
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May 2023 List
Text
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Citation List Month
May List 2023
URL Address
<a href="http://doi.org/10.1017/S1478951523000159" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S1478951523000159</a>
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Palliative team involvement in end-of-life care for Jewish and Muslim children in Jerusalem: A unique clinical and cultural context
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Palliative and Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Muslim; palliative therapy; terminal care; analgesia; article; child; decision making; female; follow up; genetic disorder; human; invasive procedure; living will; major clinical study; male; medical record review; pediatric patient; psychosocial care; religious background; retrospective study; spiritual care; Terminal Care
Creator
An entity primarily responsible for making the resource
Shack AR; Fried I; Siedner-Weintraub Y
Description
An account of the resource
OBJECTIVES: Pediatric palliative care services improve the quality of life for children with life-limiting and life-threatening diseases, although little has been published about variation based on cultural and religious factors. This article sets out to describe clinical and cultural characteristics of pediatric end-of-life patients in a majority Jewish and Muslim country with religious and legal constraints around end-of-life care. <br/>METHOD(S): We conducted a retrospective chart review of 78 pediatric patients who died during a 5-year period and could potentially have utilized pediatric palliative care services. <br/>RESULT(S): Patients reflected a range of primary diagnoses, most commonly oncologic diseases and multisystem genetic disorders. Patients followed by the pediatric palliative care team had less invasive therapies, more pain management and advance directives, and more psychosocial support. Patients from different cultural and religious backgrounds had similar levels of pediatric palliative care team follow-up but certain differences in end-of-life care. SIGNIFICANCE OF RESULTS: In a culturally and religiously conservative context that poses constraints on decision-making around end-of-life care, pediatric palliative care services are a feasible and important means of maximizing symptom relief, as well as emotional and spiritual support, for children at the end of life and their families.
Identifier
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<a href="http://doi.org/10.1017/S1478951523000159" target="_blank" rel="noreferrer noopener">10.1017/S1478951523000159</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).
2023
Analgesia
Article
Child
Decision Making
Female
Follow Up
Fried I
Genetic Disorder
Human
invasive procedure
living will
Major Clinical Study
Male
May List 2023
Medical Record Review
Muslim
Palliative And Supportive Care
Palliative Therapy
pediatric patient
psychosocial care
religious background
Retrospective Study
Shack AR
Siedner-Weintraub Y
Spiritual Care
Terminal Care
-
Dublin Core
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Title
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May 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2019 List
URL Address
<a href="http://doi.org/10.1016/j.pedn.2018.09.005" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pedn.2018.09.005</a>
Dublin Core
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Title
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Pediatric End-of-life Simulation: Preparing the Future Nurse to Care for the Needs of the Child and Family
Publisher
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Journal of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
child; human; terminal care; article; death; awareness; grief; pediatric patient; simulation; memory; distress syndrome; skill; terminal disease; expectation; nursing student; pediatric nursing
Creator
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Cole M A; Foito K
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pedn.2018.09.005" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2018.09.005</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).
Description
An account of the resource
PURPOSE: Preparing a future nurse to respond to the complex and sensitive needs of a child and family during the end-of-life requires more than didactic content in a classroom. During clinical experiences, students may care for children diagnosed with a terminal illness however; it is less likely that a student will have a clinical opportunity to care for a child and their family at the end-of-life. Without having an experience, it is challenging to teach students how to care for the dying child and family including how to appreciate the emotions, thoughts, and expectations when faced with a pediatric death (Lindsay, 2010). DESIGN AND METHODS: The instructional model integrates an end-of-life simulation into an undergraduate pediatric nursing course allowing students to practice caring for a child and their family while developing an understanding of the unique needs of a dying pediatric patient.
2019
Article
Awareness
Child
Cole M A
Death
Distress Syndrome
Expectation
Foito K
Grief
Human
Journal of Pediatric Nursing
May 2019 List
Memory
nursing student
Pediatric Nursing
pediatric patient
Simulation
Skill
Terminal Care
terminal disease
-
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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August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.4067/S1726-569X2023000100039" target="_blank" rel="noreferrer noopener"> http://doi.org/10.4067/S1726-569X2023000100039</a>
Dublin Core
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Title
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Pediatric palliative medicine in Brazil: an ethical reflection of medical practice
Publisher
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Acta Bioethica
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Palliative Care; pediatrics; article; human; ethics; palliative therapy; Brazil; prognosis; uncertainty; software; physician; medical ethics; morality; medical practice; pediatric patient
Creator
An entity primarily responsible for making the resource
Rocha AA; Freitas L; Cesconetto J; Reboucas LC; Salomao VB; Nunes RML
Description
An account of the resource
The ethical barriers involved in the practice of pediatric palliative medicine remain high and challenging. In terms of medical ethics, attention should be paid to culture, religion and family values, in order to promote adequate care for caregivers, even in case of loss of a patient, promoting a bereavement process with less suffering. The data were qualitatively analyzed by IRAMUTEQ software, with a high degree of significance of essay responses on ethics related to palliative care in pediatrics. Discussions about prognosis, goals of care, and treatment options can be very difficult, as legally supported palliative care alternatives may diverge from the wishes of the family. We conclude that divergences exist between the application of palliative medicine and ethics regarding acceptance and end-of-life management of pediatric patients. Ethical challenges are constantly complex situations in which palliative physicians must relate legal concepts, knowledge and family values, which often conflict. The quality of palliative care depends initially on the ability of specialized professionals to identify and explain the ethical issues that generate conflict or uncertainty, in addition to raising discussions with the family about the medical, moral and legal issues surrounding the difficult situation.
Identifier
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<a href="http://doi.org/10.4067/S1726-569X2023000100039" target="_blank" rel="noreferrer noopener">10.4067/S1726-569X2023000100039</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).
2023
Acta Bioethica
Article
August List 2047
Brazil
Cesconetto J
Child
Ethics
Freitas L
Human
Medical Ethics
Medical Practice
Morality
Nunes RML
Palliative Care
Palliative Therapy
pediatric patient
Pediatrics
Physician
Prognosis
Reboucas LC
Rocha AA
Salomao VB
Software
Uncertainty
-
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
March 2020 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
March 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.120" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.120</a>
Dublin Core
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Title
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Pediatric Resident's Knowledge and Attitudes Towards Spiritual Assessment and Care: An Educational Intervention. (FR408C)
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
attitude; Caucasian; child; clinical article; comfort; conference abstract; controlled study; female; human; Likert scale; palliative therapy; pediatric patient; resident; role playing; Wilcoxon signed ranks test
Creator
An entity primarily responsible for making the resource
Delaney C; Moehling K; Maurer S
Description
An account of the resource
Objectives: * Recognize the importance of religious/spiritual assessment and care in pediatric patients with serious illness. * Identify the elements of a spiritual assessment. * Assess the needs of pediatric residents in religious and spiritual assessment in children with serious illness.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.120" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.120</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).
2020
Attitude
Caucasian
Child
Clinical Article
Comfort
conference abstract
Controlled Study
Delaney C
Female
Human
Journal of Pain and Symptom Management
Likert scale
March 2020 List
Maurer S
Moehling K
Palliative Therapy
pediatric patient
Resident
Role Playing
Wilcoxon signed ranks test