1
40
27
-
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
Backlog
URL Address
<a href="http://doi.org/10.1037//0882-7974.9.1.34" target="_blank" rel="noreferrer">http://doi.org/10.1037//0882-7974.9.1.34</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
Vulnerability and resilience to combat exposure: can stress have lifelong effects?
Publisher
An entity responsible for making the resource available
Psychology And Aging
Date
A point or period of time associated with an event in the lifecycle of the resource
1994
Subject
The topic of the resource
Humans; Male; Adult; Follow-Up Studies; Aged; Middle Aged; Longitudinal Studies; Defense Mechanisms; Europe; Stress; 80 and over; P.H.S.; Research Support; U.S. Gov't; Adaptation; Psychological; Psychological/complications; Personality Development; Personality Inventory/statistics & numerical data; Software; Non-P.H.S.; Combat Disorders/diagnosis/psychology; Korea; Mathematical Computing; Veterans/psychology
Creator
An entity primarily responsible for making the resource
Aldwin CM; Levenson MR; Spiro A
Description
An account of the resource
The purpose of this study was to examine whether appraisals of desirable and undesirable effects of military service mediated the effect of combat stress on posttraumatic stress disorder (PTSD) symptoms in later life in 1,287 male veterans, aged 44-91 years (M = 63.56, SD = 7.46), 40% of whom had been in combat. The men reported more desirable effects of military service (e.g., mastery, self-esteem, and coping skills) than undesirable ones; both increased linearly with combat exposure (r = .17 and .33, p < .001, respectively). Path analysis revealed that the appraisals were independent and opposite mediators, with undesirable effects increasing and desirable effects decreasing the relationship between combat exposure and PTSD, even controlling for depression and response style. Although lifelong negative consequences of combat exposure were observed, perceiving positive benefits from this stressful experience mitigated the effect.
1994
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1037//0882-7974.9.1.34" target="_blank" rel="noreferrer">10.1037//0882-7974.9.1.34</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).
Type
The nature or genre of the resource
Journal Article
1994
80 And Over
Adaptation
Adult
Aged
Aldwin CM
Backlog
Combat Disorders/diagnosis/psychology
Defense Mechanisms
Europe
Follow-up Studies
Humans
Journal Article
Korea
Levenson MR
Longitudinal Studies
Male
Mathematical Computing
Middle Aged
Non-P.H.S.
P.H.S.
Personality Development
Personality Inventory/statistics & numerical data
Psychological
Psychological/complications
Psychology And Aging
Research Support
Software
Spiro A
Stress
U.S. Gov't
Veterans/psychology
-
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 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://pediatrics.aappublications.org/content/142/1_MeetingAbstract/640">https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/640</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
Palliative care in an underserved community: Striving and thriving
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
2018
Subject
The topic of the resource
awareness; bereavement support; bone marrow; cancer patient; Caribbean; child; childhood cancer; conference abstract; congenital malformation; coordination compound; ethnic group; Europe; female; heart; Hispanic; hospice; hospital patient; human; Japan; kidney; liver; major clinical study; male; medicaid; memory; Middle East; music therapy; neonatal intensive care unit; newborn; nursing education; pain; palliative therapy; pastoral care; perception; posthumous care; resident; sibling; social work; terminal care; terminally ill patient
Creator
An entity primarily responsible for making the resource
Alladin A R; Juanico K; Webster-Carrion A; Nares M; Cantwell G P
Description
An account of the resource
Program Goals: Our program is uniquely positioned in a safety net hospital that serves as a large tertiary referral center for pediatric transplant, trauma and heart failure as well as being an international catchment area for the southern hemisphere. Meeting the palliative care needs of our medically complex and chronically ill children proves to be a tremendous challenge, oftentimes made worse by the fact that our most technology dependent children may be uninsured with families that have little to no resources. Despite the complexity of our population and our many financial and socioeconomic constraints, we have a burgeoning Pediatric Palliative Care (PPC) Service that strives to provide quality independent of our patients' circumstances. Evaluation: In 2008, we sought to institute PPC without having dedicated FTE's. By 2013, we had convened a consistent team with existing staff and improved the awareness and importance of palliative care. Our program has experienced significant growth and now consists of one full time PPC Nurse, one volunteer faculty physician, child life, music therapy, behavioral health, pastoral care, social work and volunteer services. In 2016, our team received 176 consults - a 76% increase from our initial efforts in 2013. The majority were for Pediatric Transplant patients including Bone Marrow, Cardiac, Renal, Liver, Intestinal and Multivisceral, accounting for 23% of our total. Pediatric Oncology was our next most frequent category at 20%. The third most common consultation was for complex congenital malformations and syndromes from the Neonatal ICU at 11%. 79% of our consults consisted of ethnic minorities (Black and Hispanic). Historically, our institution serves 80% Medicaid and 3% unfunded patients. Approximately 20% of our patient population consists of international referrals and in 2016 our consults included patients from the Middle East, Caribbean, South and Central America, Europe and Japan. Our services to patients include coordination of complex care, discharges to hospice, pain and symptom management, family and sibling support, field trips and even meal, transportation and gym access vouchers. We have facilitated international medical transportation of terminally ill children back to their countries of origin to provide a peaceful death surrounded by loved ones in a familiar environment. From our cumulative PPC census, there were 90 deaths in 2016. All members of our team assisted with inpatient end of life care, memory building, bereavement services and even funeral arrangements and expenses where possible.
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
Alladin A R
April 2020 List
Awareness
Bereavement Support
bone marrow
Cancer Patient
Cantwell G P
Caribbean
Child
Childhood Cancer
conference abstract
Congenital Malformation
coordination compound
Ethnic Group
Europe
Female
Heart
Hispanic
Hospice
Hospital Patient
Human
Japan
Juanico K
kidney
liver
Major Clinical Study
Male
Medicaid
Memory
Middle East
Music Therapy
Nares M
Neonatal Intensive Care Unit
Newborn
nursing education
Pain
Palliative Therapy
Pastoral Care
Pediatrics
Perception
Posthumous Care
Resident
Sibling
Social Work
Terminal Care
terminally Ill Patient
Webster-Carrion A
-
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
Backlog
URL Address
<a href="http://doi.org/10.1016/j.clnu.2006.01.017" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.clnu.2006.01.017</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
ESPEN Guidelines on Enteral Nutrition: Cardiology and pulmonology
Publisher
An entity responsible for making the resource available
Clinical Nutrition (edinburgh, Scotland)
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Humans; Physician's Practice Patterns; Heart Failure; Europe; Pulmonary Disease; Cardiology/standards; Chronic Obstructive/therapy; Congestive/therapy; Enteral Nutrition/standards; Pulmonary Disease (Specialty)/standards
Creator
An entity primarily responsible for making the resource
Anker SD; John M; Pedersen PU; Raguso C; Cicoira M; Dardai E; Laviano A; Ponikowski P; Schols AM; DGEM(German Society for Nutritional Medicine); Becker HF; Bohm M; Brunkhorst FM; Vogelmeier C; European Society for Parenteral (ESPEN); Enteral Nutrition
Description
An account of the resource
These guidelines are intended to give evidence-based recommendations for the use of enteral nutrition (EN) in patients with chronic heart failure (CHF) and chronic obstructive pulmonary disease (COPD). They were developed by an interdisciplinary expert group in accordance with officially accepted standards and are based on all relevant publications since 1985. They have been discussed and accepted in a consensus conference. EN by means of oral nutritional supplements (ONS) or tube feeding (TF) enables nutritional intake to be maintained or increased when normal oral intake is inadequate. No data are yet available concerning the effects of EN on cachexia in CHF patients. However, EN is recommended to stop or reverse weight loss on the basis of physiological plausibility. In COPD patients, EN in combination with exercise and anabolic pharmacotherapy has the potential to improve nutritional status and function. Frequent small amounts of ONS are preferred in order to avoid postprandial dyspnoea and satiety as well as to improve compliance.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.clnu.2006.01.017" target="_blank" rel="noreferrer">10.1016/j.clnu.2006.01.017</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).
Type
The nature or genre of the resource
Journal Article
2006
Anker SD
Backlog
Becker HF
Bohm M
Brunkhorst FM
Cardiology/standards
Chronic Obstructive/therapy
Cicoira M
Clinical Nutrition (edinburgh, Scotland)
Congestive/therapy
Dardai E
DGEM(German Society for Nutritional Medicine)
Enteral Nutrition
Enteral Nutrition/standards
Europe
European Society for Parenteral (ESPEN)
Heart Failure
Humans
John M
Journal Article
Laviano A
Pedersen PU
Physician's Practice Patterns
Ponikowski P
Pulmonary Disease
Pulmonary Disease (Specialty)/standards
Raguso C
Schols AM
Vogelmeier 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
April 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
April List 2024
URL Address
<a href="http://doi.org/10.3390/children11020224" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children11020224</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
"We Want to Talk about Death, Dying and Grief and to Learn about End-of-Life Care"-Lessons Learned from a Multi-Center Mixed-Methods Study on Last Aid Courses for Kids and Teens
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
2024
Subject
The topic of the resource
child; Adolescent; Terminal Care; terminal care; adult; article; human; male; palliative therapy; aged; Europe; Australia; grief; interview; education; dying; adolescent; questionnaire; curriculum; awareness; literacy
Creator
An entity primarily responsible for making the resource
Bollig G; Graf K; Gruna H; Drexler D; Pothmann R
Description
An account of the resource
Background: Last Aid Courses (LAC) for adults have been established in 21 countries in Europe, Australia and America to improve the public discussion about death and dying and to empower people to participate in end-of-life care provision. In 2018, the first Last Aid Courses for kids and teens (LAC-KT) were introduced. The aim of the study was to explore the views and experiences of the course participants and Last Aid Course instructors on the LAC-KT. Methods: A mixed-methods approach was used. The views of the LAC-KT participants, aged 7 to 17 years, on the LAC-KT were collected using a questionnaire. In addition, the experiences of the Last Aid Course instructors were explored in focus group interviews. Results: The results show that 84% of the participants had experiences with death and dying and 91% found the LAC-KT helpful for everyone. The majority of the participants appreciate the opportunity to talk and learn about death, dying, grief and palliative care. Conclusions: The LAC-KT is feasible, very well accepted and a welcome opportunity for exchanging and obtaining information about dying, grief and palliative care. The findings of the study indicate that the LAC-KT should be offered to all interested children and teenagers and included in the school curriculum.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3390/children11020224" target="_blank" rel="noreferrer noopener">10.3390/children11020224</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).
2024
Adolescent
Adult
Aged
April List 2024
Article
Australia
Awareness
Bollig G
Child
Children
Curriculum
Drexler D
Dying
Education
Europe
Graf K
Grief
Gruna H
Human
Interview
literacy
Male
Palliative Therapy
Pothmann R
Questionnaire
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
May 2021 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 2021 List
URL Address
<a href="http://doi.org/10.1186/s12887-020-1979-4" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12887-020-1979-4</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
Key constituents for integration of care for children assisted with long-term home ventilation: a European study
Publisher
An entity responsible for making the resource available
BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Access to care; Care coordination; Caregivers; Child; Child Health; Child Health Services; Complex care needs; Europe; Family partnership; Governance; Home Care Services; Humans; Long-term home ventilation; Palliative care; Quality of care; Respiration Artificial; Respite care; Surveys and Questionnaires
Creator
An entity primarily responsible for making the resource
Brenner M; O'Shea MP; Larkin P; Berry J
Description
An account of the resource
BACKGROUND: The number of children requiring long-term home ventilation has consistently increased over the last 25 years. Given the growing population of children with complex care needs (CCNs), this was an important area of focus within the Models of Child Health Appraised (MOCHA) project, funded by the European Union (EU) under the Horizon 2020 programme. We examined the structures and processes of care in place for children with CCNs and identified key constituents for effective integration of care for these children at the community and acute care interface across 30 EU/ European Economic Area (EEA) countries. METHODS: This was a non-experimental descriptive study with an embedded qualitative element. Data were collected by a Country Agent in each of the 30 countries, a local expert in child health services. Data were analysed using descriptive statistics and a thematic analysis was undertaken of the free text data provided. RESULTS: A total of 27 surveys were returned from a possible 30 countries (90.0%) countries. One respondent indicated that their country does not have children on long-term ventilation (LTV) in the home, therefore, responses of 26 countries (86.7%) were analysed. None of the responding countries reported that they had all of the core components in place in their country. Three themes emerged from the free text provided: 'family preparedness for transitioning to home', 'coordinated pathway to specialist care' and 'legal and governance structures'. CONCLUSIONS: While the clinical care of children on LTV in the acute sector has received considerable attention, the results identify the need for an enhanced focus on the care required following discharge to the community setting. The results highlight the need for a commitment to supporting care delivery that acknowledges the complexity of contemporary child health issues and the context of the families that become their primary care givers.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12887-020-1979-4" target="_blank" rel="noreferrer noopener">10.1186/s12887-020-1979-4</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
Access to care
Berry J
Bmc Pediatrics
Brenner M
Care coordination
Caregivers
Child
Child Health
Child Health Services
Complex care needs
Europe
Family partnership
Governance
home care services
Humans
Larkin P
Long-term home ventilation
May 2021 List
O'Shea MP
Palliative Care
Quality Of Care
Respiration Artificial
Respite Care
Surveys And Questionnaires
-
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
Backlog
URL Address
<a href="http://doi.org/10.1191/026921600674582192" target="_blank" rel="noreferrer">http://doi.org/10.1191/026921600674582192</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
Attitudes and beliefs of palliative care physicians regarding communication with terminally ill cancer patients.
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Female; Humans; Male; Canada; Prognosis; Prospective Studies; Patient-Centered Care; Resuscitation Orders; Cross-Cultural Comparison; Europe; DNAR; Truth Disclosure; Palliative Care/px [Psychology]; Family/px [Psychology]; Physician-Patient Relations; Terminally Ill/px [Psychology]; Attitude of Health Personnel; Neoplasms/px [Psychology]; South America
Creator
An entity primarily responsible for making the resource
Bruera E; Neumann CM; Mazzocato C; Stiefel F; Sala R
Description
An account of the resource
The subject of communication between palliative care physicians and their patients regarding their diagnosis and prognosis has not been extensively researched. The purpose of this survey was to compare the attitudes and beliefs of palliative care specialists regarding communication with the terminally ill in Europe, South America, and Canada. A sample of palliative care physicians from South America (Argentina and Brazil), French-speaking Europe, and Canada were identified, and posted a questionnaire. Physicians who stated that they practised palliative care at least 30% of their time were considered evaluable as palliative care specialists. Of a total of 272 questionnaires, 228 were returned (84%); and 182/228 (81%) respondents were considered to be palliative care specialists. Palliative care physicians in all three regions believed that cancer patients should be informed of their diagnosis and the terminal nature of their illness. Physicians reported that at least 60% of their patients knew their diagnosis and the terminal stage of their illness in 52% and 24% of cases in South America, and 69% and 38% of cases in Europe, respectively. All physicians agreed that 'do not resuscitate' orders should be present, and should be discussed with the patient in all cases. While 93% of Canadian physicians stated that at least 60% of their patients wanted to know about the terminal stage of their illness, only 18% of South American, and 26% of European physicians said this (P < 0.001). Similar results were found when the physicians were asked the percentage of families who want patients to know the terminal stage of their illness. However, almost all of the physicians agreed that if they had terminal cancer they would like to know. There was a significant association between patient based decision-making and female sex (P = 0.007), older age (P = 0.04), and physicians from Canada and South America (P < 0.001). Finally, in their daily decision making, South American physicians were significantly more likely to support beneficence and justice as compared with autonomy. Canadian physicians were more likely to support autonomy as compared with beneficence. In summary, our findings suggest that there are major regional differences in the attitudes and beliefs of physicians regarding communication at the end of life. More research is badly needed on the attitudes and beliefs of patients, families, and health care professionals in different regions of the world.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1191/026921600674582192" target="_blank" rel="noreferrer">10.1191/026921600674582192</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).
Type
The nature or genre of the resource
Journal Article
2000
Attitude Of Health Personnel
Backlog
Bruera E
Canada
Cross-cultural Comparison
DNAR
Europe
Family/px [psychology]
Female
Humans
Journal Article
Male
Mazzocato C
Neoplasms/px [psychology]
Neumann CM
Palliative Care/px [psychology]
Palliative Medicine
Patient-centered Care
Physician-patient Relations
Prognosis
Prospective Studies
Resuscitation Orders
Sala R
South America
Stiefel F
Terminally Ill/px [Psychology]
Truth Disclosure
-
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 2017 List
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
Why Palliative Care For Children Is Preferable To Euthanasia
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
2016
Subject
The topic of the resource
End Of Life; Ethics; Euthanasia; Palliative Care; Pediatrics
Beneficence; Child; Child Welfare/ethnology; Europe; Euthanasia/ethics; Humans; Palliative Care/ethics; Pediatrics/standards; Terminal Care/ethics
Creator
An entity primarily responsible for making the resource
Carter Brian S
Description
An account of the resource
Recent laws in Europe now allow for pediatric euthanasia. The author reviews some rationale for caution, and addresses why ensuring the availability of pediatric palliative care is an important step before allowing pediatric euthanasia.
Identifier
An unambiguous reference to the resource within a given context
10.1177/1049909114542648
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).
2016
Beneficence
Carter Brian S
Child
Child Welfare/ethnology
End Of Life
Ethics
Europe
Euthanasia
Euthanasia/ethics
Humans
May 2017 List
Palliative Care
Palliative Care/ethics
Pediatrics
Pediatrics/standards
Terminal Care/ethics
The American Journal of Hospice & Palliative Care
-
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
Backlog
URL Address
<a href="http://doi.org/10.1016/S0140-6736(14)60110-0" target="_blank" rel="noreferrer">http://doi.org/10.1016/S0140-6736(14)60110-0</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
Self-requested euthanasia for children in Belgium
Publisher
An entity responsible for making the resource available
Lancet
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Humans; Young Adult; Palliative Care; Mental Competency; Personal Autonomy; Euthanasia; Choice Behavior; Minors; Europe; Belgium; Patient Rights; quality of life; adolescent; decision making; Active; Voluntary; Wedge Argument
Creator
An entity primarily responsible for making the resource
Dan B; Fonteyne C; de Cléty Stéphan Clément
Description
An account of the resource
In the complex patient—doctor relationship, the principle of personal autonomy has gradually acquired more weight against medical paternalism, both in clinical practice and in bioethical thinking. 1 In many countries, this change has been incorporated into national legislation in the past 20 years. The Belgian Act on Patients' Rights was promulgated in 2002. In the same year, the Belgian Act on Palliative Care was adopted, which grants access to palliative care that focuses on improving quality of ...
2014-02
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/S0140-6736(14)60110-0" target="_blank" rel="noreferrer">10.1016/S0140-6736(14)60110-0</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).
Type
The nature or genre of the resource
Journal Article
2014
Active
Adolescent
Backlog
Belgium
Choice Behavior
Dan B
de Cléty Stéphan Clément
Decision Making
Europe
Euthanasia
Fonteyne C
Humans
Journal Article
Lancet
Mental Competency
Minors
Palliative Care
Patient Rights
Personal Autonomy
Quality Of Life
Voluntary
Wedge Argument
Young Adult
-
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
Backlog
URL Address
<a href="http://doi.org/10.1016/s0885-3924(02)00466-9" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0885-3924(02)00466-9</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The status of pediatric palliative care in Europe
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
2002
Subject
The topic of the resource
Humans; Europe; Palliative Care/organization & administration; Pediatrics/organization & administration
Creator
An entity primarily responsible for making the resource
Dangel T
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0885-3924(02)00466-9" target="_blank" rel="noreferrer">10.1016/s0885-3924(02)00466-9</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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2002
2002
Backlog
Dangel T
Europe
Humans
Journal Article
Journal of Pain and Symptom Management
Palliative Care/organization & Administration
Pediatrics/organization & Administration
-
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 2017 List
URL Address
<a href="http://doi.org/10.1007/s00134-011-2357-3" target="_blank" rel="noreferrer">http://doi.org/10.1007/s00134-011-2357-3</a>
Notes
<p>Devictor, Denis J<br />Latour, Jos M<br />EURYDICE II study group<br />Clement de Clety S<br />Detaille T<br />Martens F<br />Biarent D<br />De Jaejer A<br />Duval E<br />Novak M<br />Maria M<br />Boeuf B<br />Blanc T<br />Villediau F<br />Cantagrel S<br />Delaporte B<br />Baraton L<br />Brissaud O<br />Le Bouedec S<br />Michel F<br />Milesi C<br />Betremieux P<br />Cremer R<br />Mitanchez D<br />Guilbert J<br />Renolleau S<br />Devictor D<br />Michaux C<br />Hubert P<br />Gayot A<br />Desprez P<br />Dobrzynski M<br />Anani D<br />Wiebe B<br />Haun C<br />Reiter K<br />Bosk A<br />Kumpf M<br />Magner C<br />Bentsen G<br />Viera M<br />Pisarcikova M<br />Sagat T<br />Rey Galan C<br />Esteban E<br />Edberg KE<br />Otterstedt U<br />Berger T<br />de Hoog M<br />de Gast-Bakker DH<br />Markhorst DG<br />Fraser J<br />Gajraj M<br />Brier J<br />Peters M<br />Tasker R<br />Marii A<br />Dobrota L<br />Aronskind E<br />Nazarov V<br />Comment in: Intensive Care Med. 2011 Nov;37(11):1723-4; PMID: 21965098</p>
Dublin Core
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Title
A name given to the resource
Forgoing life support: how the decision is made in European pediatric intensive care units
Publisher
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Intensive Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Decision Making; Intensive Care Units Pediatric; Life Support Care; Withholding Treatment/sn [statistics & Numerical Data]; Child Preschool; Europe; Female; France; Health Care Surveys; Humans; Male; Prospective Studies; Surveys And Questionnaires; Terminal Care/td [trends]
Creator
An entity primarily responsible for making the resource
Devictor DJ; Latour JM
Description
An account of the resource
PURPOSE: To determine how decisions to forgo life support are made in European pediatric intensive care units (PICUs). METHODS: A multicenter, prospective study, the Eurydice II study, among 45 PICUs: 20 in France, 21 in Northern/Western (N/W) European countries, and 4 in Eastern/Central (E/C) Europe. Data were collected between November 2009 and April 2010 through a questionnaire. RESULTS: The decision to forgo life-sustaining treatment was made in 166 (40.6%) out of 409 deceased children (median 42.9%, France 38.2%, N/W European countries 60.0%, E/C European countries 0%; P < 0.001). In the E/C group, more patients died after cardiopulmonary resuscitation (CPR) failure than after forgoing life support (P < 0.001). In all PICUs, caregivers discussed the decision during a formal meeting, after which the medical staff made the final decision. The decision was often documented in the medical record (median 100%). The majority of the parents were informed of the final decision and were at the bedside during their child's death (median 100%). Decision to forgo life-sustaining treatment occurred in 40.6% of children, compared with 33% in Eurydice I. A high percentage of parents from France were now informed about the meeting and its conclusion as compared with Eurydice I (median 100%). CONCLUSIONS: The results of this study and comparison with the Eurydice I study (2002) show a trend towards standardization of end-of-life practices across N/W European countries and France in the past decade.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00134-011-2357-3" target="_blank" rel="noreferrer">10.1007/s00134-011-2357-3</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).
2011
Child Preschool
December 2017 List
Decision Making
Devictor DJ
Europe
Female
France
Health Care Surveys
Humans
Intensive Care Medicine
Intensive Care Units Pediatric
Latour JM
Life Support Care
Male
Prospective Studies
Surveys And Questionnaires
Terminal Care/td [trends]
Withholding Treatment/sn [statistics & Numerical Data]
-
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
Backlog
URL Address
<a href="http://doi.org/10.1097/01.PCC.0000123553.22405.E3" target="_blank" rel="noreferrer">http://doi.org/10.1097/01.PCC.0000123553.22405.E3</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
Forgoing life-sustaining treatments in children: a comparison between Northern and Southern European pediatric intensive care units
Publisher
An entity responsible for making the resource available
Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Intensive Care Units; decision making; Adult; Hospital Mortality; Prospective Studies; Euthanasia; Patient Participation; Europe; Pediatric; adolescent; Preschool; Empirical Approach; Death and Euthanasia; infant; Newborn; ICU Decision Making; Parents/psychology; Organizational; Passive/psychology
Creator
An entity primarily responsible for making the resource
Devictor DJ; Nguyen DT
Description
An account of the resource
OBJECTIVES: This study was conducted to determine how the decision-making process to forgo life support differs between southern and northern European pediatric intensive care units. DESIGN: Multiple-center, prospective study. SETTING: Thirty-nine pediatric intensive care units: 12 from northern Europe and 27 from southern Europe. PATIENTS: All consecutive deaths were recorded over a 4-month period. Group 1 and group 2 included patients who died in northern and southern pediatric intensive care units, respectively. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Three hundred fifty children were enrolled, 68 in group 1 and 282 in group 2. The decision to forgo life-sustaining treatment was made in 116 children (group 1, n = 32; group 2, n = 84). In both groups, the decision was discussed by caregivers during a formal meeting. The decision to forgo life-sustaining treatment was more often made in northern countries than in southern ones (47% vs. 30%, p =.02). Parents were informed of this decision in 95% of cases in group 1 vs. 68% in group 2 (p =.01). In both groups, the final decision was made by the medical staff. Parents' contributions to the decision-making process did not differ between the two groups according to the practitioners' opinion. The decision was documented in the medical charts in 100% of the cases in group 1 and in 51% of the cases in group 2 (p =.0001). CONCLUSIONS: The decision-making process appears to be similar between northern and southern European countries. The respective contributions of the parents and the medical staff in the final decision itself seem to be identical between northern and southern countries. However, in northern European countries, the level of parents' information about the decision-making process appears higher and the decision is more often documented in the medical chart.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.PCC.0000123553.22405.E3" target="_blank" rel="noreferrer">10.1097/01.PCC.0000123553.22405.E3</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).
Type
The nature or genre of the resource
Journal Article
2004
Adolescent
Adult
Backlog
Child
Death and Euthanasia
Decision Making
Devictor DJ
Empirical Approach
Europe
Euthanasia
Female
Hospital Mortality
Humans
ICU Decision Making
Infant
Intensive Care Units
Journal Article
Male
Newborn
Nguyen DT
Organizational
Parents/psychology
Passive/psychology
Patient Participation
Pediatric
Pediatric Critical Care Medicine
Preschool
Prospective Studies
-
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
Backlog
URL Address
<a href="http://doi.org/10.1056/nejm199606133342407" target="_blank" rel="noreferrer">http://doi.org/10.1056/nejm199606133342407</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
New antiepileptic drugs
Publisher
An entity responsible for making the resource available
The New England Journal Of Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
1996
Subject
The topic of the resource
Humans; United States; Canada; Japan; Europe; Drug Approval; Anticonvulsants/adverse effects/contraindications/therapeutic use; Drugs; Investigational
Creator
An entity primarily responsible for making the resource
Dichter MA; Brodie MJ
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1056/nejm199606133342407" target="_blank" rel="noreferrer">10.1056/nejm199606133342407</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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
1996
1996
Anticonvulsants/adverse effects/contraindications/therapeutic use
Backlog
Brodie MJ
Canada
Dichter MA
Drug Approval
Drugs
Europe
Humans
Investigational
Japan
Journal Article
The New England Journal Of Medicine
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
A name given to the resource
September 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
September 2020 List
URL Address
<a href="http://doi.org/10.1007/s00467-020-04584-6" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00467-020-04584-6</a>
Dublin Core
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Title
A name given to the resource
Rapid response in the COVID-19 pandemic: a Delphi study from the European Pediatric Dialysis Working Group
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
2020
Subject
The topic of the resource
Adolescent; Child; Chronic/complications/*therapy; Coronavirus Infections/complications/prevention & control/*therapy; COVID-19; Delphi; Delphi Technique; Dialysis; Europe; Evidence-Based Medicine; Humans; Infant; Infection Control; Pandemics; Pandemics/prevention & control; Pneumonia; Preschool; Renal Dialysis; Renal Insufficiency; transplantation; Viral/complications/prevention & control/*therapy
Creator
An entity primarily responsible for making the resource
Eibensteiner F; Ritschl V; Ariceta G; Jankauskiene A; Klaus G; Paglialonga F; Edefonti A; Ranchin B; Schmitt C P; Shroff R; Stefanidis C J; Walle J V; Verrina E; Vondrak K; Zurowska A; Stamm T; Aufricht C
Description
An account of the resource
BACKGROUND: COVID-19 was declared a global health emergency. Since children are less than 1% of reported cases, there is limited information to develop evidence-based practice recommendations. The objective of this study was to rapidly gather expert knowledge and experience to guide the care of children with chronic kidney disease during the COVID-19 pandemic. METHODS: A four-round multi-center Delphi exercise was conducted among 13 centers in 11 European countries of the European Pediatric Dialysis Working Group (EPDWG) between March, 16th and 20th 2020. Results were analyzed using a mixed methods qualitative approach and descriptive statistics. RESULTS: Thirteen COVID-19 specific topics of particular need for guidance were identified. Main themes encompassed testing strategies and results (n = 4), changes in use of current therapeutics (n = 3), preventive measurements of transmission and management of COVID-19 (n = 3), and changes in standard clinical care (n = 3). Patterns of center-specific responses varied according to regulations and to availability of guidelines. CONCLUSIONS: As limited quantitative evidence is available in real time during the rapid spread of the COVID-19 pandemic, qualitative expert knowledge and experience represent the best evidence available. This Delphi exercise demonstrates that use of mixed methodologies embedded in an established network of experts allowed prompt analysis of pediatric nephrologists' response to COVID-19 during this fast-emerging public health crisis. Such rapid sharing of knowledge and local practices is essential to timely and optimal guidance for medical management of specific patient groups in multi-country health care systems such as those of Europe and the US.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00467-020-04584-6" target="_blank" rel="noreferrer noopener">10.1007/s00467-020-04584-6</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
Adolescent
Ariceta G
Aufricht C
Child
Chronic/complications/*therapy
Coronavirus Infections/complications/prevention & control/*therapy
COVID-19
Delphi
Delphi Technique
dialysis
Edefonti A
Eibensteiner F
Europe
Evidence-based Medicine
Humans
Infant
Infection Control
Jankauskiene A
Klaus G
Paglialonga F
Pandemics
Pandemics/prevention & control
Pediatric Nephrology
Pneumonia
Preschool
Ranchin B
Renal Dialysis
Renal Insufficiency
Ritschl V
Schmitt C P
September 2020 List
Shroff R
Stamm T
Stefanidis C J
Transplantation
Verrina E
Viral/complications/prevention & control/*therapy
Vondrak K
Walle J V
Zurowska A
-
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
Backlog
URL Address
<a href="http://doi.org/10.1016/j.jcf.2009.05.004" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jcf.2009.05.004</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
Implementation of European standards of care for cystic fibrosis - provision of care
Publisher
An entity responsible for making the resource available
Journal Of Cystic Fibrosis
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Humans; Practice Guidelines as Topic; Health Care Surveys; Questionnaires; Guideline Adherence; Europe; Adolescent Transitions; caregivers; Cystic Fibrosis/therapy; Patient Care/standards
Creator
An entity primarily responsible for making the resource
Elborn JS; Hodson M; Bertram C
Description
An account of the resource
BACKGROUND: Several guidelines for cystic fibrosis (CF) caregivers exist, but information about their implementation is lacking. METHODS: Adherence to European Consensus Guidelines for CF was studied by sending surveys to named healthcare professionals in 487 CF centres/units. Data were analysed qualitatively. RESULTS: Data were obtained from 177 CF clinics, providing care for 21,177 patients (33% response rate). Access to specialist healthcare professionals was good according to 80% of respondents, although only 59% reported access to specialist pharmacists. Of the respondents, 16% reported unlimited access to inpatient CF beds, however 22% reported a lack of availability of immediate care. Most respondents (84%) reviewed their patients quarterly as outpatients. Shared-care models were used by 84% of respondents. Availability and adequacy of funding presented an issue for many, although 8% of respondents indicated that key funding was derived from CF charities. CONCLUSIONS: The respondents demonstrated a high degree of implementation of European Consensus Guidelines. However, areas for improvement include shared care, access to care and funding inequalities.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jcf.2009.05.004" target="_blank" rel="noreferrer">10.1016/j.jcf.2009.05.004</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).
Type
The nature or genre of the resource
Journal Article
2009
Adolescent Transitions
Backlog
Bertram C
Caregivers
Cystic Fibrosis/therapy
Elborn JS
Europe
Guideline Adherence
Health Care Surveys
Hodson M
Humans
Journal Article
Journal of Cystic Fibrosis
Patient Care/standards
Practice Guidelines As Topic
Questionnaires
-
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
Backlog
URL Address
<a href="http://doi.org/10.1186/1748-5908-7-47" target="_blank" rel="noreferrer">http://doi.org/10.1186/1748-5908-7-47</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The European quality of care pathways (EQCP) study on the impact of care pathways on interprofessional teamwork in an acute hospital setting: study protocol: for a cluster randomised controlled trial and evaluation of implementation processes.
Publisher
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Implementation Science
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
Humans; Comorbidity; Europe; Pulmonary Disease; Process Assessment (Health Care); Critical Pathways; Research Design; Interprofessional Relations; Randomized Controlled Trials as Topic; Chronic Obstructive/ep [Epidemiology]; Chronic Obstructive/th [Therapy]; Femoral Fractures/ep [Epidemiology]; Femoral Fractures/th [Therapy]
Creator
An entity primarily responsible for making the resource
Euwema M; Lodewijckx C; Panella M; Sermeus W; Vanhaecht K
Description
An account of the resource
BACKGROUND: Although care pathways are often said to promote teamwork, high-level evidence that supports this statement is lacking. Furthermore, knowledge on conditions and facilitators for successful pathway implementation is scarce. The objective of the European Quality of Care Pathway (EQCP) study is therefore to study the impact of care pathways on interprofessional teamwork and to build up understanding on the implementation process., METHODS/DESIGN: An international post-test-only cluster Randomised Controlled Trial (cRCT), combined with process evaluations, will be performed in Belgium, Ireland, Italy, and Portugal. Teams caring for proximal femur fracture (PFF) patients and patients hospitalized with an exacerbation of chronic obstructive pulmonary disease (COPD) will be randomised into an intervention and control group. The intervention group will implement a care pathway for PFF or COPD containing three active components: a formative evaluation of the actual teams' performance, a set of evidence-based key interventions, and a training in care pathway-development. The control group will provide usual care. A set of team input, process and output indicators will be used as effect measures. The main outcome indicator will be relational coordination. Next to these, process measures during and after pathway development will be used to evaluate the implementation processes. In total, 132 teams have agreed to participate, of which 68 were randomly assigned to the intervention group and 64 to the control group. Based on power analysis, a sample of 475 team members per arm is required. To analyze results, multilevel analysis will be performed., DISCUSSION: Results from our study will enhance understanding on the active components of care pathways. Through this, preferred implementation strategies can be defined.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/1748-5908-7-47" target="_blank" rel="noreferrer">10.1186/1748-5908-7-47</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).
Type
The nature or genre of the resource
Journal Article
2012
Backlog
Chronic Obstructive/ep [Epidemiology]
Chronic Obstructive/th [Therapy]
Comorbidity
Critical Pathways
Europe
Euwema M
Femoral Fractures/ep [Epidemiology]
Femoral Fractures/th [Therapy]
Humans
Implementation Science
Interprofessional Relations
Journal Article
Lodewijckx C
Panella M
Process Assessment (Health Care)
Pulmonary Disease
Randomized Controlled Trials as Topic
Research Design
Sermeus W
Vanhaecht K
-
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
Backlog
URL Address
<a href="http://doi.org/10.12968/bjon.2014.23.6.302" target="_blank" rel="noreferrer">http://doi.org/10.12968/bjon.2014.23.6.302</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
Rights of the child: to die?
Publisher
An entity responsible for making the resource available
British Journal Of Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Child; Humans; Terminally Ill; Euthanasia; Child Advocacy; Europe; Patient Rights
Creator
An entity primarily responsible for making the resource
Gormley-Fleming Liz; Campbell A
Description
An account of the resource
The legal position of the child as a vulnerable individual requires us as a society to treat them with special consideration in regard to the sanctity of life. In UK law, euthanasia is currently illegal, although there are some moves afoot to have this changed for those who have reached majority (18 years of age in the UK).
2014-04
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/bjon.2014.23.6.302" target="_blank" rel="noreferrer">10.12968/bjon.2014.23.6.302</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).
Type
The nature or genre of the resource
Journal Article
2014
Backlog
British Journal Of Nursing
Campbell A
Child
Child Advocacy
Europe
Euthanasia
Gormley-Fleming Liz
Humans
Journal Article
Patient Rights
Terminally Ill
-
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
Backlog
URL Address
<a href="http://doi.org/10.1007/s00246-009-9442-1" target="_blank" rel="noreferrer">http://doi.org/10.1007/s00246-009-9442-1</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
Attitude toward and current practice of transfer and transition of adolescents with congenital heart disease in the United States of America and Europe
Publisher
An entity responsible for making the resource available
Pediatric Cardiology
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Child; Humans; United States; Adult; Attitude of Health Personnel; Questionnaires; Continuity of Patient Care; Europe; adolescent; Adolescent Transitions; retrospective studies; Heart Defects; Congenital/therapy; Patient Transfer/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Hilderson D; Saidi AS; Van Deyk K; Verstappen A; Kovacs AH; Fernandes SM; Canobbio MM; Fleck D; Meadows A; Linstead R; Moons P
Description
An account of the resource
The objective of this study was to explore the current practice and attitudes of pediatric cardiologists in the United States and Europe on the transfer and transition of children with congenital heart disease (CHD). A survey among pediatric cardiology programs in the United States and Europe was undertaken. Sixty-nine centers completed and returned the 61-item questionnaire that was specifically devised for this survey. Of 69 participating centers, 74% reported that they transfer their patients to adult-focused care. When a center transfers its patients, 80% transfer them to a formalized Adult Congenital Heart Disease Program. The median age of transfer is 18 years. Comorbidities, pregnancy, and patient/family request to leave pediatric cardiology were identified as initiators for transfer. Complexity of the heart defect was relatively less important when deciding whether to transfer patients. Only one-third of the centers that transfer their patients provide a structured preparation for patients and family. Development of a formal transition program is planned at 59% of the centers that transfer patients. In conclusion, timely transfer and a structured transition process of children with CHD are not implemented in all pediatric cardiology programs. Health-care providers working in pediatric cardiology should make their transfer policies explicit and transition programs ought to be developed.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00246-009-9442-1" target="_blank" rel="noreferrer">10.1007/s00246-009-9442-1</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).
Type
The nature or genre of the resource
Journal Article
2009
Adolescent
Adolescent Transitions
Adult
Attitude Of Health Personnel
Backlog
Canobbio MM
Child
Congenital/therapy
Continuity Of Patient Care
Europe
Fernandes SM
Fleck D
Heart Defects
Hilderson D
Humans
Journal Article
Kovacs AH
Linstead R
Meadows A
Moons P
Patient Transfer/statistics & numerical data
Pediatric Cardiology
Questionnaires
Retrospective Studies
Saidi AS
United States
Van Deyk K
Verstappen 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
October 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
October 2020 List
URL Address
<a href="http://doi.org/10.1016/j.annals.2020.102900" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.annals.2020.102900</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
When a child is sick: the role of social tourism in palliative and end-of-life care
Publisher
An entity responsible for making the resource available
Annals of Tourism Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
animals; Britain; British Isles; child care; childhood diseases; children; Chordata; Commonwealth of Nations; Developed Countries; emotions; eukaryotes; Europe; European Union Countries; health care; health policy; Hominidae; Homo; mammals; man; OECD Countries; primates; social tourism; UK; United Kingdom; vertebrates; Western Europe
Creator
An entity primarily responsible for making the resource
Hunter-Jones P; Sudbury-Riley L; Al-Abdin A; Menzies L; Neary K
Description
An account of the resource
Drawing upon transformative service research and social tourism literature, this paper explores the relationship between respite care and childhood illness. It focuses specifically upon the short break opportunities attached to respite care offered in children's hospices in the United Kingdom. Pathographies (illness narratives), shared by patients, siblings and family (n = 23), provide unique insights into ways in which each participate in respite care. Participation prompts inclusivity and normality. It offers a break from illness, and contributes to uplifting feelings of optimism, escapism and new beginnings. Conclusions drawn argue the need for healthcare policy to move beyond 'Dying Well' narratives into ones which celebrate 'Living Well with Dying'. Tourism participation has much to offer such a progressive healthcare policy.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.annals.2020.102900" target="_blank" rel="noreferrer noopener">10.1016/j.annals.2020.102900</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
Al-Abdin A
Animals
Annals of Tourism Research
Britain
British Isles
Child Care
childhood diseases
Children
Chordata
Commonwealth of Nations
Developed Countries
Emotions
Eukaryotes
Europe
European Union Countries
Health Care
Health Policy
Hominidae
Homo
Hunter-Jones P
Mammals
Man
Menzies L
Neary K
October 2020 List
OECD Countries
Primates
social tourism
Sudbury-Riley L
UK
United Kingdom
Vertebrates
Western Europe
-
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
Backlog
URL Address
<a href="http://doi.org/10.12968/ijpn.2014.20.5.211" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2014.20.5.211</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
Euthanasia for children and young people?
Publisher
An entity responsible for making the resource available
International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
adolescent; Child; Humans; Young Adult; Great Britain; Euthanasia; Europe
Creator
An entity primarily responsible for making the resource
Kelly D
Description
An account of the resource
In February 2014 the Belgian parliament voted to extend the existing euthanasia law to cover children under the age of 18. The law sanctions euthanasia for children with terminal or incurable conditions who are near death, suffering 'constant and unbearable pain', and whose parents and health professionals agree with the decision. The child also has to be interviewed by a psychologist or psychiatrist to ascertain and certify their 'capacity of discernment'.
2014-05
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2014.20.5.211" target="_blank" rel="noreferrer">10.12968/ijpn.2014.20.5.211</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).
Type
The nature or genre of the resource
Journal Article
2014
Adolescent
Backlog
Child
Europe
Euthanasia
Great Britain
Humans
International Journal of Palliative Nursing
Journal Article
Kelly D
Young Adult
-
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
Backlog
URL Address
<a href="http://doi.org/10.1016/j.jcf.2004.12.002" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jcf.2004.12.002</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
Standards of care for patients with cystic fibrosis: a European consensus
Publisher
An entity responsible for making the resource available
Journal Of Cystic Fibrosis
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Humans; Practice Guidelines as Topic; Europe; Adolescent Transitions; Cystic Fibrosis/therapy; Delivery of Health Care/standards
Creator
An entity primarily responsible for making the resource
Kerem E; Conway S; Elborn S; Heijerman H; Consensus Committee
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jcf.2004.12.002" target="_blank" rel="noreferrer">10.1016/j.jcf.2004.12.002</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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2005
2005
Adolescent Transitions
Backlog
Consensus Committee
Conway S
Cystic Fibrosis/therapy
Delivery of Health Care/standards
Elborn S
Europe
Heijerman H
Humans
Journal Article
Journal of Cystic Fibrosis
Kerem E
Practice Guidelines As Topic
-
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 2017 List
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 Decisions And Minors: Do Minors Have The Right To Refuse Life Preserving Medical Treatment? A Comparative Study
Publisher
An entity responsible for making the resource available
Medicine & Law
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Decision Making; Minors/lj [legislation & Jurisprudence]; Treatment Refusal/lj [legislation & Jurisprudence]; Adolescent; Canada; Child; Europe; Humans; Informed Consent/lj [legislation & Jurisprudence]; Terminally Ill/lj [legislation & Jurisprudence]; Treatment Refusal; United States
Creator
An entity primarily responsible for making the resource
Lemmens C
Description
An account of the resource
The principles of the right to informed consent and informed refusal are quite clear for competent adult patients. The right of a competent adult patient to give his informed consent before medical treatment can be started, is a patients' right that is recognised all over the world. The logical corollary of the right to informed consent is the right to informed refusal. A competent adult patient also has the right to refuse medical treatment by simply withholding or withdrawing his consent. A physician who starts medical treatment without the informed consent of his patient will be held liable for battery. Can these same principles be applied to minors? In other words: do minors also have the right to refuse medical treatment? Can a minor refuse even life preserving care? The interests of the involved parties (minor, parents and state) have to be weighed against each other case by case. A thorough examination of the available case law shows that the best interests of the minor are paramount. This "best interests" standard guides judges in their making of a decision. However, this is certainly not always in accordance with reality. In fact, minors can be mature enough to refuse treatment at a much earlier time than the age of legal majority, whatever the consequences of that refusal may be.
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).
2009
Adolescent
Canada
Child
Decision Making
Europe
Humans
Informed Consent/lj [legislation & Jurisprudence]
Lemmens C
May 2017 List
Medicine & Law
Minors/lj [legislation & Jurisprudence]
Terminally Ill/lj [legislation & Jurisprudence]
Treatment Refusal
Treatment Refusal/lj [legislation & Jurisprudence]
United States
-
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 2016 List
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
Ethical Issues In Neonatal Intensive Care Units.
Publisher
An entity responsible for making the resource available
Journal Of Maternal, Fetal And Neonatal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adult; Attitude Of Health Personnel; Child; Europe; Euthanasia Passive/ethics; Humans; Infant Newborn; Intensive Care Neonatal/ethics; Italy; Morals; Parents; Withholding Treatment/ethics
Creator
An entity primarily responsible for making the resource
Liu J; Chen X; Wang XL
Description
An account of the resource
Recent progress in neonatal care have significantly improved the prognosis and chances of survival of critically ill or extremely preterm neonates and have modified the limits of viability. However, in some circumstances, when the child's death can only be briefly postponed at the price of severe suffering, or when survival is associated with severe disabilities and an intolerable life for the child and his/her parents, the application of the full armamentarium of modern neonatal intensive care may not be appropriate. In such circumstances the limitation of intensive treatments (withholding or withdrawing) and shift towards palliative care, can represent a more humane and reasonable alternative. This article examines and discusses the ethical principles underlying such difficult decisions, the most frequent situations in which these decisions may be considered, the role of parents in the decisional process, and the opinions and behaviours of neonatologists of several European neonatal intensive units as reported by the EURONIC study.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.4415/ANN_11_03_06
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).
2016
Adult
April 2016 List
Attitude Of Health Personnel
Chen X
Child
Europe
Euthanasia Passive/ethics
Humans
Infant Newborn
Intensive Care Neonatal/ethics
Italy
Journal of Maternal, Fetal and Neonatal Medicine
Liu J
Morals
Parents
Wang XL
Withholding Treatment/ethics
-
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 2016 List
URL Address
<a href="http://www.resuscitationjournal.com/article/S0300-9572(16)00012-5/fulltext" target="_blank" rel="noreferrer">http://www.resuscitationjournal.com/article/S0300-9572(16)00012-5/fulltext</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
A Survey Of Key Opinion Leaders On Ethical Resuscitation Practices In 31 European Countries.
Publisher
An entity responsible for making the resource available
Resuscitation
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adult; Cardioulmonary Resuscitation/ethics; Child; Child Preschool; Ethics Medical; Europe; Female; Heart Arrest/therapy; Humans; Leadership; Linear Models; Male; Surveys And Questionnaires; Terminal Care/ethics
Bioethics; Cardiac Arrest; Emergency Care; End-of-life Care; Resuscitation
Creator
An entity primarily responsible for making the resource
Mentzelopoulos SD; Bossaert L; Raffay V; Askitopoulou H; Perkins GD; Greif R; Haywood K; Van de Voorde P; Xanthos T
Description
An account of the resource
BACKGROUND:
Europe is a patchwork of 47 countries with legal, cultural, religious, and economic differences. A prior study suggested variation in ethical resuscitation/end-of-life practices across Europe. This study aimed to determine whether this variation has evolved, and whether the application of ethical practices is associated with emergency care organisation.
METHODS:
A questionnaire covering four domains of resuscitation ethics was developed based on consensus: (A) Approaches to end-of-life care and family presence during cardiopulmonary resuscitation; (B) Determinants of access to best resuscitation and post-resuscitation care; (C) Diagnosis of death and organ donation (D) Emergency care organisation. The questionnaire was sent to representatives of 32 countries. Responses to 4-choice or 2-choice questions pertained to local legislation and common practice. Positive responses were graded by 1 and negative responses by 0; grades were reconfirmed/corrected by respondents from 31/32 countries (97%). For each resuscitation/end-of-life practice a subcomponent score was calculated by grades' summation. Subcomponent scores' summation resulted in domain total scores.
RESULTS:
Data from 31 countries were analysed. Domains A, B, and D total scores exhibited substantial variation (respective total score ranges, 1-41, 0-19 and 9-32), suggesting variable interpretation and application of bioethical principles, and particularly of autonomy. Linear regression revealed a significant association between domain A and D total scores (adjusted r(2)=0.42, P<0.001).
CONCLUSIONS:
According to key experts, ethical practices and emergency care still vary across Europe. There is need for harmonised legislation, and improved, education-based interpretation/application of bioethical principles. Better application of ethical practices may be associated with improved emergency care organisation.
Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
DOI: <a href="https://doi.org/10.1016/j.resuscitation.2015.12.010" target="_blank" rel="noreferrer">10.1016/j.resuscitation.2015.12.010</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).
2016
Adult
Askitopoulou H
Bioethics
Bossaert L
Cardiac Arrest
Cardioulmonary Resuscitation/ethics
Child
Child Preschool
December 2016 List
Emergency Care
End-of-life Care
Ethics Medical
Europe
Female
Greif R
Haywood K
Heart Arrest/therapy
Humans
Leadership
Linear Models
Male
Mentzelopoulos SD
Perkins GD
Raffay V
Resuscitation
Surveys And Questionnaires
Terminal Care/ethics
Van de Voorde P
Xanthos 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
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/10.1089/pmr.2021.0005" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/pmr.2021.0005</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
Care Provider Behaviors That Shape Parent Identity as a "Good Parent" to Their Seriously Ill Child
Publisher
An entity responsible for making the resource available
Palliative Medicine Reports
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
child; United States; article; female; hospital admission; human; male; priority journal; quality of life; palliative therapy; hospice; Europe; parent; interpersonal communication; legal guardian; patient comfort; physician; child parent relation; demographics; care behavior; health belief; voice; nurse; medical decision making; encouragement; reassurance
Creator
An entity primarily responsible for making the resource
Neumann ML; Weaver MS; Lord B; Wiener L; Hinds PS
Description
An account of the resource
Full text linksCite Abstract Background: Parents of medically complex children hold deeply personal definitions of how to be "good parents" that guide their medical decision making and interactions with providers and are impacted by provider behaviors. Objective: This study explored whether and how these beliefs are shaped by interactions with care providers and which provider behaviors foster or impede parents' ability to achieve their "good parent" definitions. Methods: A 63-item web-based survey distributed by an online support network for parents of medically complex children. Responses to closed- and open-ended questions from 67 caregivers based in the United States and Europe were analyzed. Results: Respondents' medical decisions are driven by goals of unselfishly doing what is best for my child (61%) and being my child's voice (18%). Almost half indicated that their personal "good parent" definition was impacted by provider behaviors or interactions with physicians or nurses. Although most parents reported wanting trusted care providers to ask them about their personal "good parent" definition, only 7% had ever been directly asked by members of their care teams about this topic. Provider behaviors such as kind and caring interactions, acknowledging the parents' role in caring for the child, and truly seeing the child as more than a diagnosis were reported as fostering caregivers' ability to achieve their "good parent" beliefs. Conclusions: The findings indicate that trusted provider-initiated conversations about "good parent" beliefs would be well received and are an opportunity to improve family-centered care. Care provider behaviors deemed by parents as supportive facilitate their efforts to achieve their "good parent" beliefs.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/pmr.2021.0005" target="_blank" rel="noreferrer noopener">10.1089/pmr.2021.0005</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).
2021
Article
August List 2041
care behavior
Child
Child Parent Relation
Demographics
encouragement
Europe
Female
Health Belief
Hinds PS
Hospice
Hospital Admission
Human
Interpersonal Communication
legal guardian
Lord B
Male
Medical Decision Making
Neumann ML
Nurse
Palliative Medicine Reports
Palliative Therapy
Parent
Patient Comfort
Physician
Priority Journal
Quality Of Life
reassurance
United States
Voice
Weaver MS
Wiener L
-
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
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1467-8519.2011.01939.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1467-8519.2011.01939.x</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 decision-making in Canada: the report by the Royal Society of Canada expert panel on end-of-life decision-making.
Publisher
An entity responsible for making the resource available
Bioethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Child; Humans; United States; Palliative Care; Advance Directives; Adult; Canada; Deep Sedation; Withholding Treatment; Aged; Euthanasia; Europe; Suicide; decision making; Active; DNAR; Assisted/lj [Legislation & Jurisprudence]; Terminal Care; Voluntary; Bioethical Issues; Public Opinion
Creator
An entity primarily responsible for making the resource
Schuklenk U; van Delden JJM; Downie Jocelyn; McLean SAM; Upshur R; Weinstock D
Description
An account of the resource
This report on end-of-life decision-making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters. Chapter 1 reviews what is known about end-of-life care and opinions about assisted dying in Canada. Chapter 2 reviews the legal status quo in Canada with regard to various forms of assisted death. Chapter 3 reviews ethical issues pertaining to assisted death. The analysis is grounded in core values central to Canada's constitutional order. Chapter 4 reviews the experiences had in a number of jurisdictions that have decriminalized or recently reviewed assisted dying in some shape or form. Chapter 5 provides recommendations with regard to the provision of palliative care in Canada, as well as recommendations for reform with respect to the various forms of assisted death covered in this document.Copyright © 2011 Blackwell Publishing Ltd.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1467-8519.2011.01939.x" target="_blank" rel="noreferrer">10.1111/j.1467-8519.2011.01939.x</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).
Type
The nature or genre of the resource
Journal Article
2011
Active
Adult
Advance Directives
Aged
Assisted/lj [Legislation & Jurisprudence]
Backlog
Bioethical Issues
Bioethics
Canada
Child
Decision Making
Deep Sedation
DNAR
Downie Jocelyn
Europe
Euthanasia
Humans
Journal Article
McLean SAM
Palliative Care
Public Opinion
Schuklenk U
Suicide
Terminal Care
United States
Upshur R
van Delden JJM
Voluntary
Weinstock D
Withholding Treatment
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
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/10.1186/s12904-022-01078-0" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-022-01078-0</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
Expert Survey on Coverage and Characteristics of Pediatric Palliative Care in Europe - A Focus on Home Care
Publisher
An entity responsible for making the resource available
BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Child; Europe; Health Care Surveys; Health care quality; access; and evaluation; Home Care Services; Home Care Services/sn [Statistics & Numerical Data]; Home care services; Humans; Palliative Care; Palliative Care/sn [Statistics & Numerical Data]; Palliative care; Pediatrics; Pediatrics/sn [Statistics & Numerical Data]
Creator
An entity primarily responsible for making the resource
Wager J; Kubek LA; Brenner M; Calmanti S; Doyle C; Lovgren M; Kreicbergs U; Kremer L; Le Moine P; Robert G; Schuiling-Otten M; Schroder-Back P; Verhagen E; Zernikow B
Description
An account of the resource
BACKGROUND: For children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care characteristics. The aim of the study was therefore to describe the association between pediatric palliative care coverage and national activities and obtain detailed information on the pediatric palliative home care structure in different European countries. METHODS: Online survey with in-country experts from N = 33 European countries. RESULTS: Pediatric palliative home care (65.6%) represented the most pediatric palliative care units (15.6%) and the least common services. National documents constituted the most widespread national pediatric palliative care activity (59.4%) and were associated with available services. Pediatric palliative home care could be mostly accessed as a service free of charge to families (95.2%) from the time of a child's diagnosis (85.7%). In most countries, oncological and non-oncological patients were cared for in pediatric palliative home care. Only a minority of home care teams covered home-ventilated children. Pediatric palliative home care usually comprised medical care (81.0%), care coordination (71.4%), nursing care (75.0%) and social support (57.1%). Most countries had at least two professional groups working in home care teams (81.0%), mostly physicians and nurses. In many countries, pediatric palliative home care was not available in all regions and did not offer a 24 h-outreach service. CONCLUSIONS: Pediatric palliative care provision in Europe is heterogeneous. Further work on country-specific structures is needed. Copyright © 2022. The Author(s).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-022-01078-0" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-01078-0</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
access
and evaluation
BMC Palliative Care
Brenner M
Calmanti S
Child
December List 2022
Doyle C
Europe
Health Care Quality
Health Care Surveys
home care services
Home Care Services/sn [statistics & Numerical Data]
Humans
Kreicbergs U
Kremer L
Kubek LA
Le Moine P
Lövgren M
Palliative Care
Palliative Care/sn [Statistics & Numerical Data]
Pediatrics
Pediatrics/sn [statistics & Numerical Data]
Robert G
Schroder-Back P
Schuiling-Otten M
Verhagen E
Wager J
Zernikow B
-
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
February 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
February 2018 List
URL Address
<a href="http://doi.org/10.1001/jamapediatrics.2017.0197" target="_blank" rel="noreferrer">http://doi.org/10.1001/jamapediatrics.2017.0197</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
Association of mortality with the death of a sibling in childhood
Publisher
An entity responsible for making the resource available
Jama Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Animals; bereavement; causes of death; Children; Chordata; Cohort Studies; Death; death rate; Denmark; Developed Countries; eukaryotes; Europe; European Union Countries; Hominidae; Homo; mammals; man; mortality; Nordic Countries; Northern Europe; OECD Countries; primates; Risk Factors; Scandinavia; Siblings; Sweden; vertebrates
Creator
An entity primarily responsible for making the resource
Yu YongFu; Liew ZeYan; Cnattingius S; Olsen J; Vestergaard M; Fu Bo; Parner ET; Qin GuoYou; Zhao NaiQing; Li Jiong
Description
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Importance: The death of a close relative is associated with an increased mortality risk among the bereaved, but much less is known about the potential association of the death of a sibling in childhood with mortality in this population. Objective: To examine the association between sibling death in childhood and subsequent mortality risk. Design, Setting, and Participants: This population-based cohort study of 5 005 029 participants evaluated linked national registers in Denmark (January 1, 1973, through December 31, 2009) and Sweden (January 1, 1973, through December 31, 2008). A total of 2 060 354 Danish and 2 944 675 Swedish children who survived the first 6 months of their life were included. We excluded 14 children who died of the same external cause as their siblings within 30 days. Data were analyzed from November 2, 2015, through October 14, 2016. Exposures: Participants were classified as exposed if a sibling died in childhood (age <18 years). Main Outcomes and Measures: Poisson regression was used to estimate mortality rate ratio (MRR) with the exposure as a time-varying variable. Results: Among the 55 818 participants who experienced sibling death in childhood (51.5% male and 48.5% female; median age at loss, 7.0 [interquartile range, 3.3-12.1] years), all-cause mortality risk was increased by 71% (MRR, 1.71; 95% CI, 1.57-1.87) during the follow-up of 37 years. The excess mortality risk was observed for groups with specific causes of death, and the higher MRRs were found when the sibling pairs died of the same cause (death due to disease [MRR, 2.16; 95% CI, 1.87-2.49]; death due to external cause [MRR, 1.91; 95% CI, 1.54-2.37]). The increased mortality risk after sibling death was seen across the follow-up period, regardless of the age at bereavement and the type of death among bereaved siblings, but the magnitude of association was stronger during the first year after sibling death (MRR, 2.51; 95% CI, 1.79-3.54). Higher MRRs were found among sibling pairs with the same sex (MRR, 1.92; 95% CI, 1.70-2.18) and close age (MRR, 1.94; 95% CI, 1.58-2.37). Conclusions and Relevance: Bereavement in childhood because of the death of a sibling was associated with an increased risk for mortality in the short and long term. Health care professionals should be aware of individuals' vulnerability due to sibling death, especially for sibling pairs of close age or the same sex. Social and health care support may help to minimize the potential adverse effects on the bereaved sibling.
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<a href="http://doi.org/10.1001/jamapediatrics.2017.0197" target="_blank" rel="noreferrer">10.1001/jamapediatrics.2017.0197</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
Animals
Bereavement
causes of death
Children
Chordata
Cnattingius S
Cohort Studies
Death
death rate
Denmark
Developed Countries
Eukaryotes
Europe
European Union Countries
February 2018 List
Fu Bo
Hominidae
Homo
JAMA Pediatrics
Li Jiong
Liew ZeYan
Mammals
Man
Mortality
Nordic Countries
Northern Europe
OECD Countries
Olsen J
Parner ET
Primates
Qin GuoYou
Risk Factors
Scandinavia
Siblings
Sweden
Vertebrates
Vestergaard M
Yu YongFu
Zhao NaiQing