1
40
8
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Dublin Core
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Title
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December 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
December 2020 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-0818L" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-0818L</a>
Dublin Core
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Title
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Reflections on charlie gard and the best interests standard from both sides of the atlantic ocean
Publisher
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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
Clinical Decision-Making/ethics; patient advocacy; patient transfer/ethics; withholding treatment
Creator
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Ross LF
Description
An account of the resource
Charlie Gard (August 4, 2016, to July 28, 2017) was an infant in the United Kingdom who was diagnosed with an encephalopathic form of mitochondrial DNA depletion syndrome caused by a mutation in the RRM2B gene. Charlie's parents raised 1.3 million (~$1.6 million US) on a crowdfunding platform to travel to New York to pursue experimental nucleoside bypass treatment, which was being used to treat a myopathic form of mitochondrial DNA depletion syndrome caused by mutations in a different gene (TK2). The case made international headlines about what was in Charlie's best interest. In the medical ethics community, it raised the question of whether best interest serves as a guidance principle (a principle that provides substantive directions as to how decisions are to be made), an intervention principle (a principle specifying the conditions under which third parties are to intervene), both guidance and intervention, or neither. I show that the United Kingdom uses best interest as both guidance and intervention, and the United States uses best interest for neither. This explains why the decision to withdraw the ventilator without attempting nucleoside bypass treatment was the correct decision in the United Kingdom and why the opposite conclusion would have been reached in the United States. Copyright © 2020 by the American Academy of Pediatrics
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2020-0818L" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-0818L</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).
2020
Clinical Decision-Making/ethics
December 2020 List
Patient Advocacy
patient transfer/ethics
Pediatrics
Ross LF
Withholding Treatment
-
Dublin Core
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Title
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April 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2020 List
URL Address
<a href="http://doi.org/10.1016/j.ymgme.2019.11.329" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ymgme.2019.11.329</a>
Dublin Core
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Title
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Caregiver-reported impact on quality of life and disease burden in patients diagnosed with metachromatic leukodystrophy: Results of an online survey and a qualitative interview
Publisher
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Molecular Genetics and Metabolism
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; adult; biomedical technology assessment; bone marrow transplantation; Caregiver; child; clinical article; conference abstract; controlled study; disease burden; enzyme replacement; European Quality of Life 5 Dimensions questionnaire; female; follow up; France; Germany; human; human tissue; infant; institutional review; interview; investment; juvenile; male; metachromatic leukodystrophy; multicenter study; palliative therapy; patient advocacy; patient care; preliminary data; quality of life; recall; sample size; wellbeing
Creator
An entity primarily responsible for making the resource
Pang F; Shapovalov Y; Howie K; Wilds A; Calcagni C; Walz M
Description
An account of the resource
Metachromatic leukodystrophy (MLD) is a rare autosomal recessive lysosomal disorder caused by a deficiency of the enzyme arylsulfatase A (ARSA). Symptoms include motor decline, developmental regression, decreased intellectual capabilities, and behavioural/psychiatric abnormalities. Until now, little data exists on the burden of illness of MLD for patients and their caregivers. This multinational study aims to quantify caregiver-reported impacts across several key domains including symptoms, treatment burden, time investment, social & emotional well-being, and professional and financial impact. Data were collected using a 45 min web survey and follow-up interview. The survey incorporated the PedsQLTM, a well-validated QoL measure for adolescents and children, and other questions specifically designed to measure the resource use relevant for MLD families based on a majority recall period of 4 weeks. The EQ-5D was also administered to capture the impact of MLD on caregivers (health disutilities). Extensive validation of the survey was conducted through feedback from clinical experts (US and France), and MLD patient advocacy groups (US and UK). This study was approved by an independent Institutional Review Board. Respondents were recruited from the US, UK, France, and Germany, representing a mix of families based on onset types (late infantile, juvenile, adult) and treatment received (supportive/palliative care, bone marrow transplant, enzyme replacement therapy). Due to the rarity of the disease, this study has no upper limit on sample size and is actively recruiting to December 2019 with a sample of >=30 respondents. Preliminary results based on current available data indicate that there is significant burden of MLD on patients and their caregivers, with some degree of variability depending on onset type. This multinational study enhances our understanding of the burden of disease of MLD, which ultimately should improve patient care and assist in the health technology assessment (HTA) of interventions for MLD.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ymgme.2019.11.329" target="_blank" rel="noreferrer noopener">10.1016/j.ymgme.2019.11.329</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
Adult
April 2020 List
biomedical technology assessment
Bone Marrow Transplantation
Calcagni C
Caregiver
Child
Clinical Article
conference abstract
Controlled Study
Disease Burden
enzyme replacement
European Quality of Life 5 Dimensions Questionnaire
Female
Follow Up
France
Germany
Howie K
Human
Human Tissue
Infant
Institutional Review
Interview
investment
juvenile
Male
Metachromatic Leukodystrophy
Molecular Genetics and Metabolism
Multicenter Study
Palliative Therapy
Pang F
Patient Advocacy
Patient Care
preliminary data
Quality Of Life
Recall
Sample Size
Shapovalov Y
Walz M
Wellbeing
Wilds 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/10.1001/archpediatrics.2010.12" target="_blank" rel="noreferrer">http://doi.org/10.1001/archpediatrics.2010.12</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Learning that leads to action: impact and characteristics of a professional education approach to improve the care of critically ill children and their families
Publisher
An entity responsible for making the resource available
Archives Of Pediatrics & Adolescent Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Child; Humans; United States; Palliative Care; Canada; Education; Professional-Family Relations; Interdisciplinary Communication; Program Evaluation; Curriculum; Quality of Health Care; Patient Advocacy; Models; Continuing/methods; Educational; Pediatrics/education
Creator
An entity primarily responsible for making the resource
Solomon MZ; Browning DM; Dokken DL; Merriman MP; Rushton CH
Description
An account of the resource
OBJECTIVE: To determine the impact of an innovative professional educational approach on clinicians' confidence and ability to make institutional improvements in pediatric palliative care. DESIGN: Evaluation to assess impact of educational intervention on participants and participant institutions. SETTING: Retreats lasting 2.5 days. PARTICIPANTS: Physicians, nurses, psychosocial staff, and bereaved parents. INTERVENTION: "Relational learning across boundaries" pedagogy. MAIN OUTCOME MEASURES: Analysis of participant questionnaires (n = 782, response rate of 84%), team leader surveys (n = 72, response rate of 71%), and follow-up interview with subsample (n = 21, response rate of 81%). Outcomes included confidence to act and institutional improvements achieved. RESULTS: Seventy-four percent of team leaders reported significant or moderate improvement in pediatric palliative care after the retreat; only 1% reported no improvement. Ninety-one percent credited the retreat experience as being somewhat or very instrumental to the improvements, which included the establishment of pediatric palliative care and bereavement programs, improvements in interdisciplinary communication, care coordination, clinician-family interaction at the bedside, and educational programs. Participants attributed the impact of the 2.5-day retreat to its key pedagogical features, involvement of family members as equal participants and participation of colleagues from other disciplines and care settings, as well as the ground rules used for the small group seminars. CONCLUSIONS: The intervention was successful in improving clinicians' confidence and catalyzed improvements in pediatric palliative care within participating institutions. Relational learning holds promise for professional learning, especially when the educational goal is tied to enabling a shift in social and ethical norms.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/archpediatrics.2010.12" target="_blank" rel="noreferrer">10.1001/archpediatrics.2010.12</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
2010
Archives Of Pediatrics & Adolescent Medicine
Backlog
Browning DM
Canada
Child
Continuing/methods
Curriculum
Dokken DL
Education
Educational
Humans
Interdisciplinary Communication
Journal Article
Merriman MP
Models
Palliative Care
Patient Advocacy
Pediatrics/education
Professional-family Relations
Program Evaluation
Quality Of Health Care
Rushton CH
Solomon MZ
United States
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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://search.ebscohost.com.ezproxy.library.ubc.ca/login.aspx?direct=true&db=c8h&AN=2010735421&site=ehost-live" target="_blank" rel="noreferrer">http://search.ebscohost.com.ezproxy.library.ubc.ca/login.aspx?direct=true&db=c8h&AN=2010735421&site=ehost-live</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
An overview of contemporary social work practice in palliative care.
Publisher
An entity responsible for making the resource available
Progress In Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Female; Male; Palliative Care; Canada; Education; Aged; Social Values; Hospices; Social Work; Patient Advocacy; Role; Research; psychosocial; PPC Book Chapter 2011 (Kim Widger); decision making; knowledge; Support; Adolescence; Collaboration; Evaluation; reflection; Access to Information; 80 and over; Commitment; Communities; Goals and Objectives; Health Care Delivery; Multidisciplinary Care Team; Patient Care Plans
Creator
An entity primarily responsible for making the resource
Cadell S; Johnston M; Bosma H; Wainright W
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
2010
2010
80 And Over
Access To Information
Adolescence
Aged
Backlog
Bosma H
Cadell S
Canada
Collaboration
Commitment
Communities
Decision Making
Education
Evaluation
Female
Goals and Objectives
Health Care Delivery
Hospices
Johnston M
Journal Article
Knowledge
Male
Multidisciplinary Care Team
Palliative Care
Patient Advocacy
Patient Care Plans
PPC Book Chapter 2011 (Kim Widger)
Progress In Palliative Care
psychosocial
Reflection
Research
Role
Social Values
Social Work
Support
Wainright W
-
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.1365-2796.2006.01666.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1365-2796.2006.01666.x</a>
Dublin Core
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Title
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A journey of hope: lessons learned from studies on rare diseases and orphan drugs
Publisher
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Journal Of Internal Medicine
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; Clinical Trials as Topic; Patient Advocacy; Hemophagocytic/drug therapy; Lymphohistiocytosis; Orphan Drug Production/legislation & jurisprudence; Rare Diseases/drug therapy; Severe Combined Immunodeficiency/drug therapy; Tyrosinemias/drug therapy
Creator
An entity primarily responsible for making the resource
Wastfelt M; Fadeel B; Henter JI
Description
An account of the resource
Rare diseases are frequently life-threatening or chronically debilitating and the impact on the quality of life of affected patients and their family members is thus significant. However, drug development for these conditions has been limited by a lack of understanding of the underlying mechanisms of disease and the relative unavailability of subjects for clinical trials, as well as the prohibitive cost of investing in a novel pharmaceutical agent with poor market potential. Nevertheless, the introduction of Orphan Drug legislations has provided important incentives for the development of orphan drugs (i.e. drugs that have been abandoned or 'orphaned' by major drug companies). Moreover, recent studies on rare diseases, including inherited immunodeficiencies and metabolic disorders, have served not only to alleviate the plight of patients with rare diseases, but also yielded valuable information on biological processes of relevance for other, more common conditions. These lessons, along with the crucial importance of cooperation between academic institutions, pharmaceutical companies, patient advocacy groups and society in the elucidation of rare diseases, are highlighted in the present review.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1365-2796.2006.01666.x" target="_blank" rel="noreferrer">10.1111/j.1365-2796.2006.01666.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
2006
Backlog
Clinical Trials as Topic
Fadeel B
Hemophagocytic/drug therapy
Henter JI
Humans
Journal Article
Journal Of Internal Medicine
Lymphohistiocytosis
Orphan Drug Production/legislation & jurisprudence
Patient Advocacy
Rare Diseases/drug therapy
Severe Combined Immunodeficiency/drug therapy
Tyrosinemias/drug therapy
Wastfelt M
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/j.clon.2004.02.003" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.clon.2004.02.003</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
For purposes of research, palliative care patients should not be considered a vulnerable population
Publisher
An entity responsible for making the resource available
Clinical Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Humans; Guidelines as Topic; Patient Advocacy; Terminology as Topic; Ethics; Medical; Death and Euthanasia; Biomedical and Behavioral Research; Multi-site Ethics; Neoplasms/therapy; Biomedical Research/ethics; Palliative Care/ethics/trends; Prejudice; Vulnerable Populations
Creator
An entity primarily responsible for making the resource
Berry SR
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.clon.2004.02.003" target="_blank" rel="noreferrer">10.1016/j.clon.2004.02.003</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
2004
2004
Backlog
Berry SR
Biomedical and Behavioral Research
Biomedical Research/ethics
Clinical Oncology
Death and Euthanasia
Ethics
Guidelines As Topic
Humans
Journal Article
Medical
Multi-site Ethics
Neoplasms/therapy
Palliative Care/ethics/trends
Patient Advocacy
Prejudice
Terminology as Topic
Vulnerable Populations
-
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.1547-5069.2004.04047.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1547-5069.2004.04047.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
A survey of IRB process in 68 U.S. hospitals
Publisher
An entity responsible for making the resource available
Journal Of Nursing Scholarship
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Humans; United States; Questionnaires; Guidelines as Topic; Time Factors; Patient Advocacy; Analysis of Variance; Empirical Approach; Ethics Committees; Biomedical and Behavioral Research; Multi-site Ethics; Guideline Adherence/standards; Professional Competence/standards; Research/organization & administration; Human Experimentation; Conflict of Interest; Documentation/methods/standards; Hospital Bed Capacity/statistics & numerical data; Organizational Affiliation; Outcome and Process Assessment (Health Care)/organization & administration
Creator
An entity primarily responsible for making the resource
Larson E; Bratts T; Zwanziger J; Stone P
Description
An account of the resource
PURPOSE: To compare IRB processes in 68 U.S. hospitals for the same multicenter study. DESIGN: Survey of IRB processes in 68 U.S. hospitals during 2001-2002. METHODS: Requirements of IRB submission including type and duration of review and qualifications of principal investigator were compared by hospital bed size, region, and academic affiliation. FINDINGS: The majority of hospitals (63.2%) were on the East coast, and mean bed size was 465 (range: 77-2,112). About one-third (33.8%) required that the principal investigator listed on the application be from within the institution, 26.5% required evidence of human subjects research training, 10.3% required a conflict of interest statement. Mean number of pages for the application was 5.24 (1-31) and up to eight copies were requested. Time from submission of the IRB application to approval averaged 45.4 days (range, 1-303 days), and the majority of reviews were "expedited" (61.8%). Expedited reviews required more time (mean, 54.8 days) than did either exempt (mean, 10.8 days) or full (mean, 47.1 days) reviews. CONCLUSIONS: Current IRB review processes are cumbersome and nonstandardized, and review time varies widely. The absence of efficient and streamlined review might unnecessarily impede national clinical research projects without improving participant safety.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1547-5069.2004.04047.x" target="_blank" rel="noreferrer">10.1111/j.1547-5069.2004.04047.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
2004
Analysis of Variance
Backlog
Biomedical and Behavioral Research
Bratts T
Conflict of Interest
Documentation/methods/standards
Empirical Approach
Ethics Committees
Guideline Adherence/standards
Guidelines As Topic
Hospital Bed Capacity/statistics & numerical data
Human Experimentation
Humans
Journal Article
Journal Of Nursing Scholarship
Larson E
Multi-site Ethics
Organizational Affiliation
Outcome and Process Assessment (Health Care)/organization & administration
Patient Advocacy
Professional Competence/standards
Questionnaires
Research/organization & administration
Stone P
Time Factors
United States
Zwanziger J
-
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.2003.9.1.11040" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2003.9.1.11040</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
Human research ethics committees: issues in palliative care research
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
2003
Subject
The topic of the resource
Humans; Attitude to Health; Attitude of Health Personnel; Nurse's Role; Research Design; Patient Advocacy; Ethics; Terminally Ill/psychology; Ethics Committees; Multi-site Ethics; Nursing; Research/organization & administration; Research Personnel/psychology; Human Experimentation; Nursing Research/ethics; Palliative Care/ethics/psychology
Creator
An entity primarily responsible for making the resource
Lee S; Kristjanson LJ
Description
An account of the resource
Palliative care research is fraught with many difficulties. There are challenges associated with conducting research with vulnerable patients and families, difficulties with obtaining informed consent, and methodological complexities. Thoughtful construction of research protocols may overcome many of these problems. However, researchers may be powerless to overcome the discomfort of members of human research ethics committees (HRECs) who disallow access to palliative care patients and families. The notion of conducting research with this group is often perceived as abhorrent by those who do not practise in palliative care. This is because of a persistent idea that dying people and their families are so burdened by the dying process and so vulnerable to exploitation that they should not be approached to be involved in research. This over-protectiveness regarding palliative care research often distorts the proper gate-keeping role of HRECs and health-care professionals. This article draws on the authors' experiences of presenting applications to HRECs over the last 20 years. It explores the responsibilities of HRECs, the responsibilities of palliative care researchers and the rights of patients and families. HRECs and health professionals who endeavour to undertake palliative care research are encouraged to reflect and re-examine the role of ethics committees.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2003.9.1.11040" target="_blank" rel="noreferrer">10.12968/ijpn.2003.9.1.11040</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
2003
Attitude Of Health Personnel
Attitude To Health
Backlog
Ethics
Ethics Committees
Human Experimentation
Humans
International Journal of Palliative Nursing
Journal Article
Kristjanson LJ
Lee S
Multi-site Ethics
Nurse's Role
Nursing
Nursing Research/ethics
Palliative Care/ethics/psychology
Patient Advocacy
Research Design
Research Personnel/psychology
Research/organization & administration
Terminally Ill/psychology