1
40
4
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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 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
October 2018 List
URL Address
<a href="http://doi.org/10.1136/bmjopen-2017-018266" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjopen-2017-018266</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 journey through care: study protocol for a longitudinal qualitative interview study to investigate the healthcare experiences and preferences of children and young people with life-limiting and life-threatening conditions and their families in the West Midlands, UK
Publisher
An entity responsible for making the resource available
BMJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Family/px [Psychology]; Palliative Care/es [Ethics]; Palliative Care/mt [Methods]; Patient Preference/px [Psychology]; Adolescent; Child; Female; Humans; Longitudinal Studies; Male; Preschool; Qualitative Research; Quality of Health Care/og [Organization & Administration]; Research Design; United Kingdom
Creator
An entity primarily responsible for making the resource
Mitchell S; Slowther AM; Coad J; Dale J
Description
An account of the resource
INTRODUCTION: The number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their conditions are often complex and highly unpredictable. Palliative care is advocated for people with life-limiting and life-threatening conditions, but these services for children are highly variable in terms of availability and scope. Little is known about the lived experiences and preferences of children and their families in terms of the palliative care that they do, or do not, receive. This study aims to produce an in-depth insight into the experiences and preferences of such children and families in order to develop recommendations for the future provision of services. The study will be carried out in the West Midlands, UK. METHODS AND ANALYSIS: A qualitative study comprising longitudinal interviews over a 12-month period with children (aged 5-18 years) living with life-limiting or life-threatening conditions and their family members. Data analysis will start with thematic analysis, followed by narrative and cross-case analysis to examine changing experiences and preferences over time, at the family level and within the wider healthcare system. Patient and public involvement (PPI) has informed the design and conduct of the study. Findings will be used to develop recommendations for an integrated model of palliative care for children in partnership with the patient and public involvement (PPI) group. ETHICS AND DISSEMINATION: Ethical approval was granted in September 2016 by the National Health Service Health Research Authority (IRAS ID: 196816, REC reference: 16/WM/0272). Findings will be of immediate relevance to healthcare providers, policy-makers, commissioners and voluntary sector organisations in the UK and internationally. Reports will be prepared for these audiences, as well as for children and their families, alongside academic outputs.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjopen-2017-018266" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2017-018266</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.
2018
Adolescent
Bmj Open
Child
Coad J
Dale J
Family/px [psychology]
Female
Humans
Longitudinal Studies
Male
Mitchell S
October 2018 List
Palliative Care/es [Ethics]
Palliative Care/mt [methods]
Patient Preference/px [Psychology]
Preschool
Qualitative Research
Quality of Health Care/og [Organization & Administration]
Research Design
September 2018 List
Slowther AM
United Kingdom
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 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
March 2018 List
URL Address
<a href="http://doi.org/10.1038/jp.2015.188" target="_blank" rel="noreferrer">http://doi.org/10.1038/jp.2015.188</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 neonatal neurology: robust support for infants, families and clinicians
Publisher
An entity responsible for making the resource available
Journal Of Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Infant; Nervous System Diseases; Palliative Care; Parents/px [Psychology]; Clinical Decision-Making/es [Ethics]; Diseases; Diseases/px [Psychology]; Diseases/th [Therapy]; Humans; infant; Intensive Care Units; Neonatal/og [Organization & Administration]; Nervous System Diseases/px [Psychology]; Nervous System Diseases/th [Therapy]; Neurology/mt [Methods]; Newborn; Palliative Care/es [Ethics]; Palliative Care/mt [Methods]; Palliative Care/px [Psychology]; social support
Creator
An entity primarily responsible for making the resource
Lemmon ME; Bidegain M; Boss RD
Description
An account of the resource
Infants with neurological injury and their families face unique challenges in the neonatal intensive care unit. As specialty palliative care support becomes increasingly available, we must consider how to intentionally incorporate palliative care principles into the care of infants with neurological injury. Here, we review data regarding neonatal symptom management, prognostic uncertainty, decision making, communication and parental support for neonatal neurology patients and their families.
2015
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1038/jp.2015.188" target="_blank" rel="noreferrer">10.1038/jp.2015.188</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).
2015
Bidegain M
Boss RD
Clinical Decision-Making/es [Ethics]
Diseases
Diseases/px [Psychology]
Diseases/th [Therapy]
Humans
Infant
Intensive Care Units
Journal Of Perinatology
Lemmon ME
March 2018 List
Neonatal/og [Organization & Administration]
Nervous System Diseases
Nervous System Diseases/px [Psychology]
Nervous System Diseases/th [Therapy]
Neurology/mt [Methods]
Newborn
Palliative Care
Palliative Care/es [Ethics]
Palliative Care/mt [methods]
Palliative Care/px [psychology]
Parents/px [psychology]
Social Support
-
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/10.1177/1049909108322294" target="_blank" rel="noreferrer">http://doi.org/10.1177/1049909108322294</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 use of pediatric advance directives: a tool for palliative care physicians.
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
2008
Subject
The topic of the resource
Child; Humans; United States; Personal Autonomy; decision making; DNAR; Palliative Care/es [Ethics]; Palliative Care/og [Organization & Administration]; Advance Care Planning/es [Ethics]; Right to Die/lj [Legislation & Jurisprudence]; Advance Care Planning/og [Organization & Administration]; Palliative Care/px [Psychology]; Child Advocacy; Pediatrics/og [Organization & Administration]; Child Advocacy/es [Ethics]; Child Advocacy/lj [Legislation & Jurisprudence]; Child Advocacy/px [Psychology]; Minors/lj [Legislation & Jurisprudence]; Minors/px [Psychology]; Parental Consent/es [Ethics]; Parental Consent/lj [Legislation & Jurisprudence]; Parental Consent/px [Psychology]; Patient Participation/lj [Legislation & Jurisprudence]; Patient Participation/px [Psychology]; Pediatrics/es [Ethics]; Right to Die/es [Ethics]
Creator
An entity primarily responsible for making the resource
Zinner SE
Description
An account of the resource
Although laws such as the Patient Self-Determination Act encourage individuals to address their end-of-life treatment preferences using advance directives, the wishes of children have traditionally been ignored or, perhaps even worse, overruled. Given that there is a substantial body of research indicating that children are capable of making mature decisions when faced with terminal illness, the author proposes granting minors, especially older minors, the right to participate in making end-of-life decisions. Children who complete advance directives benefit in multiple ways. Adopting this approach could benefit patients by demonstrating respect for patient autonomy and informing parents and providers that the minor may be ready to stop aggressive treatment.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909108322294" target="_blank" rel="noreferrer">10.1177/1049909108322294</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
2008
Advance Care Planning/es [Ethics]
Advance Care Planning/og [Organization & Administration]
Backlog
Child
Child Advocacy
Child Advocacy/es [Ethics]
Child Advocacy/lj [Legislation & Jurisprudence]
Child Advocacy/px [Psychology]
Decision Making
DNAR
Humans
Journal Article
Minors/lj [legislation & Jurisprudence]
Minors/px [Psychology]
Palliative Care/es [Ethics]
Palliative Care/og [Organization & Administration]
Palliative Care/px [psychology]
Parental Consent/es [Ethics]
Parental Consent/lj [Legislation & Jurisprudence]
Parental Consent/px [Psychology]
Patient Participation/lj [Legislation & Jurisprudence]
Patient Participation/px [Psychology]
Pediatrics/es [Ethics]
Pediatrics/og [Organization & Administration]
Personal Autonomy
Right to Die/es [Ethics]
Right to Die/lj [Legislation & Jurisprudence]
The American Journal of Hospice & Palliative Care
United States
Zinner SE
-
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/s1553-7250(11)37002-x" target="_blank" rel="noreferrer">http://doi.org/10.1016/s1553-7250(11)37002-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
Developing a policy for do not resuscitate orders within a framework of goals of care.
Publisher
An entity responsible for making the resource available
Joint Commission Journal On Quality And Patient Safety / Joint Commission Resources
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Humans; Policy; decision making; DNAR; Palliative Care/og [Organization & Administration]; Hospital Administration/es [Ethics]; Patient Care Planning/es [Ethics]; Patient Care Planning/og [Organization & Administration]; Resuscitation Orders/es [Ethics]; Palliative Care/es [Ethics]; Terminal Care/es [Ethics]; Terminal Care/og [Organization & Administration]
Creator
An entity primarily responsible for making the resource
Kaldjian LC; Broderick A
Description
An account of the resource
BACKGROUND: Discussions about DNR (do not resuscitate) orders or code status are common but can be difficult and may not lead to accurate understanding between clinicians and patients. These discussion are often isolated from the larger context of a patient's plan of care. Addressing patients goals of care, which provide a basic orientation for clinical and ethical decision making, may improve clinicians' understanding about patients' code-status preferences., A POLICY FOR DNR ORDERS WITHIN A FRAMEWORK OF GOALS OF CARE: On the basis of experience at the University of Iowa Hospitals and Clinics, which entailed incorporating goals of care in ethics education, identifying six goals of care through a structured literature review, surveying hospitalized adults, and integrating goals of care into palliative care education, the University of Iowa Hospitals and Clinics ethics committee revised the hospital policy regarding DNR orders. The intention was to avoid treating DNR orders as an isolated clinical phenomenon and to instead place the discussion of DNR orders in the more general context of end-of-life discussions and to place both of these discussions within an even more general framework of goals of care., CONCLUSIONS: The DNR order policy represents an effort to translate conceptual analysis, empirical research, and clinical experience into hospital policy so that clinicians are encouraged to place code-status discussions within a larger, goal-oriented context. Using goals of care to guide decision making about DNR orders and other treatments should enhance the quality of patient care by improving the fit between the biomedical information we provide patients and the values our patients rely on to make their medical decisions.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s1553-7250(11)37002-x" target="_blank" rel="noreferrer">10.1016/s1553-7250(11)37002-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
Backlog
Broderick A
Decision Making
DNAR
Hospital Administration/es [Ethics]
Humans
Joint Commission Journal On Quality And Patient Safety / Joint Commission Resources
Journal Article
Kaldjian LC
Palliative Care/es [Ethics]
Palliative Care/og [Organization & Administration]
Patient Care Planning/es [Ethics]
Patient Care Planning/og [Organization & Administration]
Policy
Resuscitation Orders/es [Ethics]
Terminal Care/es [ethics]
Terminal Care/og [organization & Administration]