1
40
13
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1111/hex.13925" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/hex.13925</a>
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Title
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What do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis
Publisher
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Health Expectations
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; disability; article; controlled study; female; human; male; palliative therapy; preschool child; child parent relation; aged; interview; parent; interpersonal communication; school child; intellectual impairment; qualitative research; side effect; hospital care; adolescent; health care system; drug therapy; semi structured interview; adverse drug reaction; patient safety; pediatric hospital; thematic analysis; special situation for pharmacovigilance; kindness
Creator
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Ong N; Lucien A; Long J; Weise J; Burgess A; Walton M
Description
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Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual disability admitted to two tertiary state-wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability. Design, setting and participants: Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi-structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses. Results: Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability-specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child-centred context. Conclusions: The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital. Patient and public contribution: Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews.
Identifier
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<a href="http://doi.org/10.1111/hex.13925" target="_blank" rel="noreferrer noopener">10.1111/hex.13925</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
Adolescent
Adverse Drug Reaction
Aged
Article
Burgess A
Child
Child Parent Relation
Controlled Study
Disability
Drug Therapy
February List 2024
Female
Health Care System
Health Expectations
Hospital care
Human
Intellectual Impairment
Interpersonal Communication
Interview
kindness
Long J
Lucien A
Male
Ong N
Palliative Therapy
Parent
Patient Safety
Pediatric Hospital
Preschool Child
Qualitative Research
School Child
Semi Structured Interview
Side Effect
special situation for pharmacovigilance
Thematic Analysis
Walton M
Weise J
-
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/10.1186/s12904-023-01194-5" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01194-5</a>
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Title
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Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Palliative Care; adult; article; controlled study; female; human; male; palliative therapy; pediatrics; clinical article; qualitative research; skill; health care system; thematic analysis; decision making; multidisciplinary team; semi structured interview; organization; patient care team
Creator
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Rico-Mena P; Gueita-Rodriguez J; Martino-Alba R; Chocarro-Gonzalez L; Sanz-Esteban I; Palacios-Cena D
Description
An account of the resource
Purpose: To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents. Methods: A qualitative descriptive case study was conducted. Purposeful sampling took place within a specialized pediatric palliative care Unit in Madrid (Spain), located at the Niño Jesus Hospital. The study participants included a specialized pediatric palliative care team from Madrid's pediatric palliative care program, other professional teams involved in interdisciplinary care and parents of children under pediatric palliative care. Data were collected via semi-structured interviews, focus groups and researchers' field notes. A thematic analysis was performed. Results: This study included 28 participants (20 women, 8 men), of whom 18 were professionals who belonged to the pediatric palliative care interdisciplinary team, 4 professionals were from other units that collaborated with the pediatric palliative care, and 6 were parents (5 women, 1 man). The mean age of the pediatric palliative care members was 38.2 years (SD ± 7.9), that of the collaborating professionals was 40.5 (SD ± 6.8), and that of the parents was 44.2 (SD ± 5.4). Two main themes emerged: a) Pediatric palliative care has a distinct identity, associated with life. It represents the provision of special care in highly complex children, in the context of the home, far from the hospital environment; b) The team is key: its interdisciplinary organization provides a more comprehensive view of the child and their family, fosters communication among professionals, and improves coordination with other services involved in the care of children. The mindset shift experienced by ID-PPC professionals towards a palliative approach makes them more sensitive to the needs of their patients and leads them to develop specific skills in areas such as communication, decision-making, and adaptability that were identified as differentiating aspects of pediatric palliative care. Conclusions: Describing pediatric palliative care from the professional and parental perspective helps to establish realistic and comprehensive goals for the care of children and their parents. The findings of this study may help with the establishment of a pediatric palliative care team, as a necessary organizational change in a health care system that cares for children with complex and life-threatening conditions. Promoting training in pediatric palliative care, prioritizing more horizontal organizations, providing tools and spaces for coordination and communication between professionals from different services, together with the creation of a position of case coordinator in the care process of children could enhance the understanding of pediatric palliative care services.
Identifier
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<a href="http://doi.org/10.1186/s12904-023-01194-5" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01194-5</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
Adult
Article
August List 2046
BMC Palliative Care
Child
Chocarro-González L
Clinical Article
Controlled Study
Decision Making
Female
Gueita-Rodriguez J
Health Care System
Human
Male
Martino-Alba R
Multidisciplinary team
Organization
Palacios-Cena D
Palliative Care
Palliative Therapy
Patient Care Team
Pediatrics
Qualitative Research
Rico-Mena P
Sanz-Esteban I
Semi Structured Interview
Skill
Thematic Analysis
-
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/10.1007/s00431-023-05030-z" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00431-023-05030-z</a>
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Title
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Appropriateness of end-of-life care for children with genetic and congenital conditions: a cohort study using routinely collected linked data
Publisher
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European Journal of Pediatrics
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; Cohort Studies; Belgium; Terminal Care; terminal care; article; female; human; major clinical study; male; palliative therapy; pediatrics; cohort analysis; physician; nuclear magnetic resonance imaging; health care system; general practitioner; decision making; bereavement; computer assisted tomography; congenital disorder; drawing; administrative health data; genetic association; genetic disorder; empirical research; paramedical personnel; X ray
Creator
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Piette V; Deliens L; Debulpaep S; Cohen J; Beernaert K
Description
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Abstract This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing children (1-17) who died with genetic and congenital conditions in Belgium between 2010 and 2017. We measured 22 quality indicators, face-validated using a previously published RAND/UCLA methodology. Appropriateness of care was defined as the overall "expected health benefit" of given healthcare interventions within a healthcare system exceeding expected negative outcomes. In the 8-year study period, 200 children were identified to have died with genetic and congenital conditions. Concerning appropriateness of care, in the last month before death, 79% of children had contact with specialist physicians, 17% had contact with a family physician, and 5% received multidisciplinary care. Palliative care was used by 17% of the children. Concerning inappropriateness of care, 51% of the children received blood drawings in the last week before death, and 29% received diagnostics and monitoring (2 or more magnetic resonance imaging scans, computed tomography scans, or X-rays) in the last month. Conclusion: Findings suggest end-of-life care could be improved in terms of palliative care, contact with a family physician and paramedics, and diagnostics and monitoring in the form of imaging. What is Known: • Previous studies suggest that end-of life care for children with genetic and congenital conditions may be subject to issues with bereavement, psychological concerns for child and family, financial cost at the end of life, decision-making when using technological interventions, availability and coordination of services, and palliative care provision. Bereaved parents of children with genetic and congenital conditions have previously evaluated end-of-life care as poor or fair, and some have reported that their children suffered a lot to a great deal at the end of life. • However, no peer-reviewed population-level quality evaluation of end-of-life care for this population is currently present. What is New: • This study provides an evaluation of the appropriateness of end-of-life care for children who died in Belgium with genetic and congenital conditions between 2010 and 2017, using administrative healthcare data and validated quality indicators. The concept of appropriateness is denoted as relative and indicative within the study, not as a definitive judgement. • Our study suggests improvements in end-of-life care may be possible, for instance, in terms of the provision of palliative care, contact with care providers next to the specialist physician, and diagnostics and monitoring in terms of imaging (e.g., magnetic resonance imaging, computed tomography scans). Further empirical research is necessary, for instance, into unforeseen and foreseen end-of-life trajectories, to make definitive conclusions about appropriateness of care.
Identifier
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<a href="http://doi.org/10.1007/s00431-023-05030-z" target="_blank" rel="noreferrer noopener">10.1007/s00431-023-05030-z</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
administrative health data
Article
August List 2043
Beernaert K
Belgium
Bereavement
Child
Cohen J
Cohort Analysis
Cohort Studies
computer assisted tomography
congenital disorder
Debulpaep S
Decision Making
Deliens L
Drawing
Empirical Research
European Journal of Pediatrics
Female
General Practitioner
genetic association
Genetic Disorder
Health Care System
Human
Major Clinical Study
Male
nuclear magnetic resonance imaging
Palliative Therapy
paramedical personnel
Pediatrics
Physician
Piette V
Terminal Care
X ray
-
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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April 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
April 2020 List
URL Address
<a href="https://jim.bmj.com/content/68/1/91" target="_blank" rel="noreferrer noopener">https://jim.bmj.com/content/68/1/91</a>
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Title
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Family attitudes toward genomic sequencing in children with cardiac disease
Publisher
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Journal of Investigative 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
child; conference abstract; confidentiality; consumer; controlled study; Family Attitudes; family planning; genetic discrimination; grounded theory; health care system; heart center; Heart Diseases -- Mortality; human; human tissue; insurance; interrater reliability; perception; privacy; prognosis; resource allocation; semi structured interview; sequence analysis; surgery; transplantation; trust; uncertainty
Creator
An entity primarily responsible for making the resource
Gal D; Deuitch N; Tang R; Magnus D; Char D
Description
An account of the resource
Purpose of study Care for children with cardiac disease often involves difficult decisions and clinical uncertainty. Genomic Sequencing (GS) promises to improve clinical prognostics and could impact how difficult decisions are made. We sought to determine how GS results might alter family attitudes towards bedside care choices. Methods used We conducted semi-structured interviews of 35 families at a high-volume pediatric heart center. We discussed previous experience with and understanding of GS, perceptions toward GS in real and hypothetical scenarios, and support needed for implementing GS in clinical care. Responses were analyzed using grounded theory and a codebook was developed. Researchers discussed interpretation of codes and identified and described emerging themes. Interrater reliability was 0.91. Summary of results Three themes emerged: 1) Is knowledge beneficial? Families saw benefits in GS-the ability to provide specific and/or earlier diagnoses, clarify prognosis, change family planning, and avoid unnecessary/additional testing-but also struggled with the sense that GS results did not translate into meaningful changes in clinical care. 2) Should GS guide life limiting decisions and resource allocation? Some parents felt using GS to justify withdrawal of care or allocation of scarce resources (like organs for transplantation) could represent genetic discrimination; other parents felt GS should be used when allocating resources, even if it meant limitation of treatment options for their child. 3) Is giving GS results to the healthcare system safe? All families indicated mistrust of at least one facet of the medical system including insurance companies, maintenance of confidentiality, and the incentive structure in healthcare. Some also expressed distrust of direct to consumer GS testing. Conclusions In families of children with cardiac disease, trust is lacking in perceptions of the clinical utility of GS results, in using GS results to inform difficult decisions and in clinical protections for privacy or handling of GS results. Further efforts to improve the trustworthiness of clinical GS are needed to engage family support in implementation of GS to clinical care.
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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
April 2020 List
Char D
Child
conference abstract
Confidentiality
consumer
Controlled Study
Deuitch N
Family Attitudes
family planning
Gal D
genetic discrimination
Grounded Theory
Health Care System
heart center
Heart Diseases -- Mortality
Human
Human Tissue
Insurance
interrater reliability
Journal Of Investigative Medicine
Magnus D
Perception
Privacy
Prognosis
Resource Allocation
Semi Structured Interview
sequence analysis
Surgery
Tang R
Transplantation
Trust
Uncertainty
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Dublin Core
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Title
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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.2019.12.299" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.299</a>
Dublin Core
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Title
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Key Findings of the Structures and Processes of Inpatient Pediatric Palliative Care Programs (S737)
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
burnout; child; clergy; conference abstract; controlled study; female; health care delivery; health care system; hospital patient; human; major clinical study; male; palliative therapy; physician; practice guideline; registered nurse; social worker
Creator
An entity primarily responsible for making the resource
Rogers M; Williams C; Klick J; Friebert S; Heitner R
Description
An account of the resource
Objectives: * Examine the key structures and processes of inpatient pediatric palliative care programs in the United States. * Assess the degree of variation in program delivery, staffing, and patient volumes. * Identify three threats and three opportunities to the standardization of pediatric palliative care practice. Original Research Background: Over the past ten years, health care systems have begun to recognize pediatric palliative care (PPC) programs as the standard of practice in providing high-quality care. Despite this culture shift, little is known about how PPC programs operate, the services they provide, or the staffing required to provide them sustainably. Research Objectives: To examine the key structures and processes of PPC programs.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.299" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.299</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
Burnout
Child
Clergy
conference abstract
Controlled Study
Female
Friebert S
Health Care Delivery
Health Care System
Heitner R
Hospital Patient
Human
Journal of Pain and Symptom Management
Klick J
Major Clinical Study
Male
March 2020 List
Palliative Therapy
Physician
Practice Guideline
registered nurse
Rogers M
Social Worker
Williams 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
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February 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
February 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/141/1_MeetingAbstract/388">https://pediatrics.aappublications.org/content/141/1_MeetingAbstract/388</a>
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Title
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PICU and palliative care partnership to standardize family meetings and decrease ICU readmission rates
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
child; conference abstract; controlled study; documentation; health care system; hospital readmission; human; intensive care; invasive procedure; length of stay; nurse practitioner; palliative therapy; protocol compliance; satisfaction; total quality management
Creator
An entity primarily responsible for making the resource
Frizzola M; Miller E; Hayman J; Levy C
Description
An account of the resource
Program Goals: The American College of Critical Care Medicine Task Force, 2004-2005 recommends "family meetings with the multi-professional team begin within 24-48 hours after ICU admission and are repeated as dictated by the condition of the patient with input from all pertinent members of the multi-professional team" (2007). We set forth to follow this recommendation through palliative care and pediatric ICU partnerships as well as standardized family meetings. We hypothesize that this will improve patient and family satisfaction, decrease ICU re-admission rates and may decrease overall length of stay and invasive procedures. We have developed a quality improvement project targeting patients that have had a re-admission to the PICU within 30 days. The project outlines the optimal timing of family meetings, provides a meeting content planner, and documentation template. The targeted patient population will receive an automatic palliative care consult to assist with the coordination and conducting of an initial family meeting. The frequency of subsequent scheduled family meetings will be determined based on patient/family needs and acuity of illness. In 2015, we found 42 re-admissions (3% of all PICU admissions) within a 30 day period. The majority of the readmissions were medically complex children with three or more co-morbid conditions. Our goal through implementation of this program is to decrease the readmissions by 20% within a one year time period. We intend to use a standardized format for these meetings as previously published by Nelson et al in 2009. Meetings will be attended by at least one family member, bedside nurse, ICU physician (fellow or attending) or Nurse Practitioner and palliative care team members. The family meeting documentation template will be created in our EMR to serve as both a guide for the meeting and documentation format. Evaluation We plan to monitor our protocol compliance by tracking readmissions, placement of palliative care consult order, family meeting occurring within 48-72 hours of readmission, documentation of the family meetings, and frequency at which family meetings are occurring thereafter. Upon successful implementation of our protocol, we will follow total length of stay, PICU length of stay and number of invasive procedures. Discussion Hospital re-admission rates are becoming a widespread concern throughout many healthcare systems. The majority of these pediatric re-admissions involve medically complex children. We hope this multi-disciplinary approach utilizing recommended best practices from the American College of Critical Care Medicine Task Force contributes to a decrease in ICU re-admission rates.
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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
Child
conference abstract
Controlled Study
Documentation
February 2020 List
Frizzola M
Hayman J
Health Care System
hospital readmission
Human
Intensive Care
invasive procedure
Length Of Stay
Levy C
Miller E
Nurse Practitioner
Palliative Therapy
Pediatrics
protocol compliance
Satisfaction
Total Quality Management
-
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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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/10.1089/jpm.2019.0203" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2019.0203</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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The Role of Child Life Specialists in Providing Culturally Responsive Palliative Care to the Mexican Origin Community
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
human; palliative therapy; pediatric patient; coping behavior; terminal care; bereavement; grief; medical specialist; health care system; bereavement support; breathing exercise; child life specialist; communication skill; cultural anthropology; family centered care; guided imagery; health care delivery; health personnel attitude; letter; medical procedures; Mexican; relaxation training; religion; scope of practice
Creator
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Petkus J M
Identifier
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<a href="http://doi.org/10.1089/jpm.2019.0203" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0203</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
Bereavement
Bereavement Support
breathing exercise
child life specialist
Communication Skill
Coping Behavior
cultural anthropology
Family Centered Care
Grief
guided imagery
Health Care Delivery
Health Care System
Health Personnel Attitude
Human
Journal of Palliative Medicine
Letter
Medical Procedures
Medical Specialist
Mexican
October 2019 List
Palliative Therapy
pediatric patient
Petkus J M
relaxation training
Religion
Scope Of Practice
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
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="https://academic.oup.com/pch/article/24/Supplement_2/e26/5506918" target="_blank" rel="noreferrer noopener">https://academic.oup.com/pch/article/24/Supplement_2/e26/5506918</a>
Dublin Core
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Title
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Medical assistance in dying and minors-views of the Canadian pediatrician
Publisher
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Paediatrics and Child Health (Canada)
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; female; human; major clinical study; male; controlled study; terminal care; conference abstract; disability; pediatrician; health care system; conversation; intractable pain; medical care; mental disease; terminal disease
Creator
An entity primarily responsible for making the resource
Catena G; Davies D
Description
An account of the resource
BACKGROUND: Medical Assistance in Dying (MAID) has been a heavily debated topic in Canada over the last decade. Since the royal assent of Bill C-14 in 2016, MAID has been available to Canadians 18 years of age or older meeting specific eligibility criteria. As part of this Act, an independent review was initiated to evaluate requests made by mature minors for MAID and ultimately possible inclusion in further iterations of the Act. OBJECTIVE(S): Limited Canadian data is available on the role of MAID in mature minors or the views of health care practitioners on this topic. This study aims to assess the attitudes of Canadian health care practitioners surrounding MAID in minors and their willingness to participate in this process. DESIGN/METHODS: A survey was disseminated to members of the Canadian Paediatric Society, collecting information on attitudes surrounding MAID as it applies to minors, specifically mature minors, those with intolerable disability and mental illness. The survey also assessed the demographics of respondents, including type of practice and patient population. The results were analyzed using logistical regression to determine if there were correlations between practice variables and opinions surrounding MAID. RESULT(S): A 29% response rate was achieved (574/1979), with 487 participants completing all questions. Of the respondents, 46% were in favour that MAID should be eligible for mature minors experiencing progressive or terminal illness or intractable pain; 29% felt patients with intolerable disability should be eligible, while only 8% favoured extension in cases of intolerable mental illness. Lastly, 33% felt that MAID should never be extended to minors. There was no significant correlation between attitudes towards MAID and the respondent's type of practice, or if they work with minors suffering from life-threatening illness. Practitioners who felt their spiritual beliefs guide their opinions surrounding MAID were more likely to oppose eligibility for children (p<0.00001). Practitioners who had the experience of discussing MAID with parents or children were more likely to support extending MAID to mature minors (p=0.046). CONCLUSION(S): There exists a great variability in viewpoints amongst pediatric healthcare practitioners as it relates to extension of MAID to minors. As opinions vary based on factors including spiritual beliefs and conversations pertaining to end of life care, more time and research is warranted to further explore this topic in the context of the Canadian health care system.
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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
Catena G
Child
conference abstract
Controlled Study
Conversation
Davies D
Disability
Female
Health Care System
Human
intractable pain
Major Clinical Study
Male
Medical Care
mental disease
October 2019 List
Paediatrics and Child Health (Canada)
Pediatrician
Terminal Care
terminal disease
-
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Title
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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="https://adc.bmj.com/content/104/Suppl_3/A64.3" target="_blank" rel="noreferrer noopener">https://adc.bmj.com/content/104/Suppl_3/A64.3</a>
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Title
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Challenges experienced by paediatricians providing palliative care to children; A thematic analysis
Publisher
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Archives of Disease in Childhood
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; female; human; major clinical study; male; palliative therapy; controlled study; thematic analysis; human experiment; learning; pediatrics; conference abstract; questionnaire; e-mail; pediatrician; health care system; needs assessment; Australia; expectation; holistic care; social welfare; specialist registrar
Creator
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Balfe J; Whitla L; Devins M; Molloy E; Twomey M; O'Reilly M
Description
An account of the resource
Background: and aim Palliative Care for Children is defined as 'an active and total approach to care, from the point of diagnosis or recognition throughout the child's life, death and beyond'. It is recognised that the prevalence of children with life-limiting conditions (LLC) is increasing. In Ireland the majority of children with LLC are cared for by paediatricians working in hospitals with no direct access to specialist paediatric palliative care(PPC) services. This study was part of a learning needs assessment of paediatrician's training and experience in PPC. Method(s): Consultants and Specialist Registrars in Paediatrics were approached by email and asked to complete a questionnaire regarding their learning needs in PPC. The Quality of Care Collaborative for Australia in PPC Project Research Study Group Learning Needs Assessment template was used with permission. The questionnaire included both multiple choice and free-text questions. Quantitative data from the study has been reported elsewhere. Thematic analysis based on the approach of Braun and Clarke (2006) was used to analyse data provided in the free-text answers. Result(s): 114 paediatricians responded to the survey, 72 respondents (63%) provided free-text answers to the question 'Reflecting on your most recent clinical interactions with children requiring palliative care support. What were the challenges?' On analysis, three overarching themes emerged, 'Best interests of the child', 'Inadequate training and confidence' and 'Co-ordinating care'. 'Best interests of the child' referred to the challenges experienced in ensuring that best interests of the child remain at the core of all decisions made when providing palliative care. This overarching theme included two sub-themes 'Complex communication' which referred to the challenges in managing parental expectations in increasingly technologically advanced healthcare systems and 'First do no harm' referring to the frequent ethical dilemmas that arise in PPC. 'Inadequate adequate training and confidence' referred to lack of specific education in complex symptom management and also to lack of familiarity with community based healthcare services. The theme of 'coordinating care' encompassed the need to liaise with community services but also the need to provide holistic care to the whole family which may be unfamiliar paediatricians working in an acute hospital setting. Conclusion(s): This study explores the challenges experienced by paediatricians providing palliative care to children with LLCs. The themes provide insight into those experiences and provides valuable direction to support the development of future educational programmes in this important and rapidly evolving paediatric sub-speciality.
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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
Archives of Disease in Childhood
Australia
Balfe J
Child
conference abstract
Controlled Study
Death
Devins M
E-mail
Expectation
Female
Health Care System
Holistic Care
Human
Human Experiment
Learning
Major Clinical Study
Male
Molloy E
Needs Assessment
O'Reilly M
October 2019 List
Palliative Therapy
Pediatrician
Pediatrics
Questionnaire
Social Welfare
specialist registrar
Thematic Analysis
Twomey M
Whitla L
-
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 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
August 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0335" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0335</a>
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Title
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Perceptions of a Good Death in Children with Life-Shortening Conditions: An Integrative Review
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
children; death; Medline; article; child; female; human; male; palliative therapy; pediatric palliative care; systematic review; perception; Cinahl; data extraction; Embase; narrative; synthesis; Web of Science; PsycINFO; social care; health care system; life-shortening conditions
Creator
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Chong P H; Walshe C; Hughes S
Description
An account of the resource
Background: For children with life-shortening illness, achieving a "good death" can be a tacit goal. There is little understanding of how different stakeholders perceive what a "good death" might be. Objective(s): To review empirical literature to construct an understanding of a "good death" for children with life-shortening conditions. Design(s): An integrative review approach was followed. This involved searching across Embase, Web of Science, Medline, CINAHL, and PsycINFO (no date limits set), as well as identifying eligible studies tracking reference lists. Appraisal of shortlisted articles in full text was performed, followed by data extraction, synthesis, and interpretation. Result(s): Analysis of articles (n = 24) yielded a dynamic and layered narrative about a good death that revolved around three themes. (1) Level of needs: includes both practical support and aspirational goals such as "do everything." (2) The composite experience: whether positive or negative adds to produce a sense of suffering. (3) Control (preservation and letting go): moving from maintaining status quo to acceptance of the child's death, the experience of which also contributes to suffering. Framed using a health care system perspective, a concept map that interprets a good death in children with life-shortening conditions is represented. Conclusion(s): A single yet holistic understanding of a good death experienced in the "real world" is suggested. Pediatric health and social care providers, and even policy makers, can use this new understanding to conceive alternative approaches to enhance support to dying children and their families. Copyright � 2019, Mary Ann Liebert, Inc.
Identifier
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<a href="http://doi.org/10.1089/jpm.2018.0335" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0335</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
Article
August 2019 List
Child
Children
Chong P H
Cinahl
data extraction
Death
Embase
Female
Health Care System
Hughes S
Human
Journal of Palliative Medicine
life-shortening conditions
Male
Medline
Narrative
Palliative Therapy
Pediatric Palliative Care
Perception
Psycinfo
Social Care
synthesis
Systematic Review
Walshe C
Web of Science
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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November 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2018 List
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000537853.70857.ca" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537853.70857.ca</a>
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Title
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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
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Kim YS;Choi YH;Lee B;Park JD;Yun YH
Description
An account of the resource
Aims & Objectives: Preference for care in dying children is important for the quality of end-of-life care but little is known about attitudes of the relatives of the children toward the preference according to the expected life span. Methods We conducted a national survey about the preference for care in dying of pediatric patients in four participants groups. Results We analyzed nationwide questionnaires of total 4,154 participants; 928 physicians from the 12 hospitals and the Korean Medical Association, 1,241 general population, 979 adult cancer patients, and 1,006 family caregivers from 12 general hospitals. The preference for aggressive treatment or life-sustaining treatment (LST) decreased and the preference for hospice-palliative care (HPC) increased according to the decrease of expected life span in all the groups. The positive preference for aggressive treatment is significantly higher in the patients and family caregivers groups than in the physicians group. The preference for LST is significantly higher in the three groups compare to the physicians group 6. But the preference for HPC is significantly lower in these groups compare to the physicians group. Conclusions The preferences for aggressive treatment, LST and HPC have changed according to the decrease of expected life span, and were different among the population group. Communication program and health care systems to reduce the gap of the preferences between the general population, patients or family carefivers and physicians are needed.
Identifier
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<a href="http://doi.org/10.1097/01.pcc.0000537853.70857.ca" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537853.70857.ca</a>
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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
June 2018 List
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).
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 2018 List
URL Address
<a href="http://doi.org/https://journals.viamedica.pl/palliative_medicine_in_practice/article/view/56160/43289" target="_blank" rel="noreferrer noopener">http://doi.org/https://journals.viamedica.pl/palliative_medicine_in_practice/article/view/56160/43289</a>
Dublin Core
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Title
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Parents' needs for physician-parent communication in the face of life-threatening illness: Qualitative analysis
Publisher
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Palliative Medicine in Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
childhood disease; interpersonal communication; life threatening illness; parent; personal needs; physical disease; physician; adolescent; article; child; child death; child hospitalization; clinical article; female; health care system; hospice; human; infant; knowledge; law suit; male; malpractice; personal experience; preschool child; qualitative analysis; school child; semi structured interview
Creator
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Janusz B; Walkiewicz M
Description
An account of the resource
Introduction. Parents of a child diagnosed with a life-threatening illness often experience the state of cognitive and emotional disorganization. The key factor determining parents-physicians cooperation is the quality of their relations. That is why physicians should be familiar with conditions that may help or disturb parents to manage this extreme situation. Competent communication leads to more effective treatment as well as fewer medical malpractice claims and lawsuits filed against doctors. Material and methods. The aim of this paper is the description and analysis of the needs of 23 parents whose children were diagnosed with life-threatening illnesses that led to death. The deceased children were treated mainly in hospitals or in hospices. The study was conducted in the period of one up to four years following the death of a child. A semi-structured interview was constructed and used for the purpose of this research. The transcription was analysed according to the rules of Qualitative Content Analysis with applying NVivo 9 software. Results. The results have revealed five categories of parents' needs addressed to physicians: 1) a greater intensity of direct parent-physician contact; 2) experience of doctors' thorough knowledge about the child and their illness; 3) a greater doctors' involvement in the search for the causes of the disease and further treatment; 4) parents' established position in the healthcare system, especially when the treatment lasted for a long time 5) more clear information about the applied treatment and condition of the child. Conclusions. The research indicates that the challenge of communication with parents is not only clear information about the course of a disease, providing facts about functioning of the entire health care system and this is particularly important for the parents whose child has been undergoing a long-term treatment. A physician should emphasise the meaning of palliative care as an integrated system of support. Parents' decision-making about medical treatment on the early stage of an illness may cause too heavy strain to some of them.
Identifier
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<a href="http://doi.org/https://journals.viamedica.pl/palliative_medicine_in_practice/article/view/56160/43289" target="_blank" rel="noreferrer noopener">https://journals.viamedica.pl/palliative_medicine_in_practice/article/view/56160/43289</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).
2017
Adolescent
Article
Child
Child Death
child hospitalization
Childhood Disease
Clinical Article
Female
Health Care System
Hospice
Human
Infant
Interpersonal Communication
Janusz B
June 2018 List
Knowledge
law suit
Life Threatening illness
Male
malpractice
Palliative Medicine in Practice
Parent
Personal Experience
personal needs
physical disease
Physician
Preschool Child
Qualitative Analysis
School Child
Semi Structured Interview
Walkiewicz M
-
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 2017 List
URL Address
<a href="https://link.springer.com/chapter/10.1007/978-3-319-33679-4_31" target="_blank" rel="noreferrer">https://link.springer.com/chapter/10.1007/978-3-319-33679-4_31</a>
Notes
<p>Using Smart Source Parsing<br />(pp Date of Publication: 2017</p>
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Title
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Palliative Care
Publisher
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Pediatric Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Neoplasm; Palliative Therapy; 73-78-9 (lidocaine); 76-99-3 (methadone); 103-90-2 (paracetamol); 125-56-4 (methadone); 137-58-6 (lidocaine); 297-88-1 (methadone); 437-38-7 (fentanyl); 1095-90-5 (methadone); 8002-76-4 (opiate); 8008-60-4 (opiate); 12794-10-4 (benzodiazepine); 23142-53-2 (methadone); 24847-67-4 (lidocaine); 53663-61-9 (opiate); 56934-02-2 (lidocaine); 60142-96-3 (gabapentin); Acute Stress Disorder; Alcohol Consumption; Anticonvulsive Agent; Appetite; Benzodiazepine; Corticosteroid; Distress Syndrome; Dyspnea; Fentanyl; Gabapentin; Hair Loss; Health Care Personnel; Health Care System; Hospital; Human; Intensive Care Unit; Lidocaine; Major Depression; Medical Staff; Methadone; Mortality; Nausea And Vomiting; Obesity; Opiate; Paracetamol; Paralysis; Patient Care Planning; Priority Journal; Prostaglandin/ec [endogenous Compound]; Quality Of Life; Tracheostomy
Creator
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Wasilewski-Masker K; Howk T; Connelly E; Postovsky S; Brill P; Wrammert KC; Pillai R
Description
An account of the resource
Cancer is a leading cause of death in adolescents and young adults (AYAs) Wiener et al. (Pediatr Blood Cancer 60(5):715-718, 2013). Though most AYAs will survive, cancer will become incurable in 10-40 % Schrijvers and Meijnder (Cancer Treat Rev 33(7):616-621, 2007). Although the general philosophies of palliative care apply to AYAs, developmental considerations are unique to this group (Ferrari et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4850-4857, 2010); Wein et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4819-4824, 2010). The interaction of psychosocial, emotional, physical, and existential issues is essential to consider (Wein et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4819-4824, 2010). The gaps in care experienced on both sides of the healthcare system between pediatric and adult medicine can be particularly impactful when delivering palliative care. The benefit of a multidisciplinary palliative care approach is widely appreciated as is the need to begin the process early in order to develop a trusting relationship (Wiener et al. Pediatr Blood Cancer 60(5):715-718, 2013; Baker et al. Pediatr Clin N Am 55(1):223-250, 2008; Ferris et al. J Clin Oncol Off J Am Soc Clin Oncol 27(18):3052-3058). Honest communication which supports autonomy is essential in discussions of their goals, worries, risks versus benefits of treatment, and advanced care planning (Clark and Fasciano Am J Hosp Palliat Care 32(1):101-111, 2015; Christenson et al. J Pediatr Health Care Off Publ Natl Assoc Pediatr Nurse Assoc Pract 24(5):286-291, 2010; Linebarger et al. Pediatr Clin N Am 61(4):785-796, 2014).
Identifier
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<a href="https://doi.org/10.1007/978-3-319-33679-4_31" target="_blank" rel="noreferrer">10.1007/978-3-319-33679-4_31</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).
103-90-2 (paracetamol)
1095-90-5 (methadone)
125-56-4 (methadone)
12794-10-4 (benzodiazepine)
137-58-6 (lidocaine)
2017
23142-53-2 (methadone)
24847-67-4 (lidocaine)
297-88-1 (methadone)
437-38-7 (fentanyl)
53663-61-9 (opiate)
56934-02-2 (lidocaine)
60142-96-3 (gabapentin)
73-78-9 (lidocaine)
76-99-3 (methadone)
8002-76-4 (opiate)
8008-60-4 (opiate)
Acute Stress Disorder
Alcohol Consumption
Anticonvulsive Agent
Appetite
Benzodiazepine
Brill P
Connelly E
Corticosteroid
Distress Syndrome
Dyspnea
Fentanyl
Gabapentin
Hair Loss
Health Care Personnel
Health Care System
Hospital
Howk T
Human
Intensive Care Unit
Lidocaine
Major Depression
Medical Staff
Methadone
Mortality
Nausea And Vomiting
Neoplasm
November 2017 List
Obesity
Opiate
Palliative Therapy
Paracetamol
Paralysis
Patient Care Planning
Pediatric Oncology
Pillai R
Postovsky S
Priority Journal
Prostaglandin/ec [endogenous Compound]
Quality Of Life
Tracheostomy
Wasilewski-Masker K
Wrammert KC