1
40
25
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Dublin Core
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Title
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2023 Special Edition 3 - Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.30081" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.30081</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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Differences in palliative opportunities across diagnosis groups in children with cancer.
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Infant Newborn; Child; Child Preschool; Palliative Care; Retrospective Studies; Adolescent; Infant; Quality of Life; Recurrence; Only Child; Terminal Care/psychology; Neoplasms/therapy; Leukemia; Clinical Trials Phase I as Topic; Lymphoma
Creator
An entity primarily responsible for making the resource
Ebelhar J; DeGroote NP; Massie AM; Labudde E; Allen KE; Castellino SM; Wasilewski-Masker K; Brock KE
Description
An account of the resource
BACKGROUND: Childhood cancer causes significant physical and emotional stress. Patients and families benefit from palliative care (PC) to reduce symptom burden, improve quality of life, and enhance family-centered care. We evaluated palliative opportunities across leukemia/lymphoma (LL), solid tumors (ST), and central nervous system (CNS) tumor groups. PROCEDURE: A priori, nine palliative opportunities were defined: disease progression/relapse, hematopoietic stem cell transplant, phase 1 trial enrollment, admission for severe symptoms, social concerns or end-of-life (EOL) care, intensive care admission, do-not-resuscitate (DNR) status, and hospice enrollment. A single-center retrospective review was completed on 0-18-year olds with cancer who died from January 1, 2012 to November 30, 2017. Demographic, disease, and treatment data were collected. Descriptive statistics were performed. Opportunities were evaluated from diagnosis to death and across disease groups. RESULTS: Included patients (n = 296) had LL (n = 87), ST (n = 114), or CNS tumors (n = 95). Palliative opportunities were more frequent in patients with ST (median 8) and CNS tumors (median 7) versus LL (median 5, p = .0005). While patients with ST had more progression/relapse opportunities (p < .0001), patients with CNS tumors had more EOL opportunities (p < .0001), earlier PC consultation, DNR status, and hospice enrollment. Palliative opportunities increased toward the EOL in all diseases (p < .0001). PC was consulted in 108 (36%) patients: LL (48%), ST (30%), and CNS (34%, p = .02). CONCLUSIONS: All children with cancer incur many events warranting PC support. Patients with ST and CNS tumors had more palliative opportunities than LL, yet received less subspecialty PC. Understanding palliative opportunities within each disease group can guide PC utilization to ease patient and family stress.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.30081" target="_blank" rel="noreferrer noopener">10.1002/pbc.30081</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2023 SE3 - Oncology
Adolescent
Allen KE
Brock KE
Castellino SM
Child
Child Preschool
Clinical Trials Phase I as Topic
DeGroote NP
Ebelhar J
Humans
Infant
Infant Newborn
Labudde E
Leukemia
Lymphoma
Massie AM
Neoplasms/therapy
Only Child
Palliative Care
Pediatric Blood and Cancer
Quality Of Life
Recurrence
Retrospective Studies
Terminal Care/psychology
Wasilewski-Masker K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
February 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
February 2021 List
URL Address
<a href="http://doi.org/10.1177/0009922820940808" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0009922820940808</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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Defining Legacy: The Perceptions of Pediatric Health Care Providers
Publisher
An entity responsible for making the resource available
Clinical 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
Child; Female; Humans; Male; Adaptation Psychological; Attitude to Death; Child Hospitalized/psychology; Terminal Care/psychology; pediatrics; Parents/psychology; Physician's Role; Social Support; Pediatrics/standards; Terminally Ill/psychology; health care; legacy; perceptions; providers
Creator
An entity primarily responsible for making the resource
Boles J; Jones M; Dunbar J; Cook J
Description
An account of the resource
Legacy building interventions like plaster hand molds are offered in most children's hospitals, yet little is known about how the concept of legacy is understood and described by pediatric health care providers. Therefore, this study explored pediatric health care providers' perceptions of legacy at an academic medical center to ensure that future legacy interventions are evidence-informed and theoretically grounded. An electronic survey featuring three open-ended questions and two multiple-choice questions with an option for free text response was completed by 172 medical and psychosocial health care providers. Analysis yielded four themes: (1) legacy is intergenerational, enduring, and typically associated with end-of-life; (2) legacies articulate the impacts on others for which one is known and remembered; (3) legacies can be expressed through tangible items or intangible qualities; and (4) legacies are informed and generated by family relationships and work experiences. By understanding legacy as a personally and professionally contextualized experience, health care providers can better assess and meet the legacy needs of hospitalized pediatric patients and families.
Identifier
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<a href="http://doi.org/10.1177/0009922820940808" target="_blank" rel="noreferrer noopener">10.1177/0009922820940808</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
Adaptation Psychological
Attitude To Death
Boles J
Child
Child Hospitalized/psychology
Clinical Pediatrics
Cook J
Dunbar J
February 2021 List
Female
Health Care
Humans
Jones M
legacy
Male
Parents/psychology
Pediatrics
Pediatrics/standards
perceptions
Physician's Role
Providers
Social Support
Terminal Care/psychology
Terminally Ill/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 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2019 List
URL Address
<a href="http://doi.org/10.1177/1049909118785891" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1177/1049909118785891</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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Health-Care Provider Personal Religious Preferences and Their Perspectives on Advance Care Planning With Patients
Publisher
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American journal of hospice & palliative care
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Spirituality; advance care planning; Terminal Care/psychology; Middle Aged; Male; Young Adult; Humans; Adult; Female; Decision Making; Attitude of Health Personnel; Religion; advance directives; hospital-specific palliative care issues; spirituality; religion; Health Personnel/psychology; Advance Care Planning/statistics & numerical data; attitude of health personnel; Clergy/psychology; living wills; Living Wills/psychology/statistics & numerical data; physician patient communication
Creator
An entity primarily responsible for making the resource
Bowman M; St Cyr S; Stolf I A
Description
An account of the resource
OBJECTIVE:: To understand how health-care providers' (HCPs) religious preferences influence their willingness to undertake advance care planning (ACP) with patients and their acceptance of other HCP's involvement. METHODS:: Online anonymous survey distributed to HCPs in hospital, ambulatory offices, and hospice settings in Dayton, Ohio. We evaluated the associations of HCP religion with their personal ACP, willingness to facilitate ACP, and acceptance of other HCPs' ACP participation. RESULTS:: 704 respondents: nurses (66.2%), physicians (18.8%), other HCPs (15.0%), white (88.9%), and primarily Catholic (23.3%) or Protestant (32.0%). "No religion" was marked by 13.9%. Respondents were favorable to ACP with patients. Religious respondents were more likely to have a living will ( P = .035) and health-care power of attorney ( P = .007) and more accepting of clergy as ACP decision coaches ( P = .030). HCP's religion was not associated with willingness to facilitate ACP discussions. There were minor differences between Catholics and Protestants. CONCLUSIONS:: Personal religious preference is associated with HCP's own ACP but had little relationship with their willingness to facilitate ACP conversations with patients or acceptance of other professional types of HCPs involvement in ACP conversations. Regardless of religious affiliation, HCPs have interest in undertaking ACP and endorse other HCPs ACP involvement. As results of this study suggest that personal religious affiliation is not a barrier for HCPs engaging in ACP with patients, attempts to overcome barriers to increasing ACP should be directed to other factors.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909118785891" target="_blank" rel="noreferrer noopener">10.1177/1049909118785891</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Adult
Advance Care Planning
Advance Care Planning/statistics & Numerical Data
Advance Directives
American journal of hospice & palliative care
April 2019 List
Attitude Of Health Personnel
Bowman M
Clergy/psychology
Decision Making
Female
Health Personnel/psychology
hospital-specific palliative care issues
Humans
Living Wills
Living Wills/psychology/statistics & numerical data
Male
Middle Aged
physician patient communication
Religion
Spirituality
St Cyr S
Stolf I A
Terminal Care/psychology
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/10.1136/bmjspcare-2012-000326" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmjspcare-2012-000326</a>
Dublin Core
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Title
A name given to the resource
The lived experience of physicians dealing with patient death.
Publisher
An entity responsible for making the resource available
Bmj Supportive & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Female; Humans; Male; Terminal Care; Adult; Emotions; Middle Aged; Communication; Attitude to Death; Palliative Care/psychology; Physician-Patient Relations; Attitude of Health Personnel; Clinical encounter; Psychological care; Terminal Care/psychology
Creator
An entity primarily responsible for making the resource
Whitehead PR
Description
An account of the resource
BACKGROUND: A growing body of research indicates that physicians suffer high levels of stress, depression and burnout. Related literature has found that physician stress can negatively impact patient care. This study builds upon previous research that found some dying patients experienced 'iatrogenic suffering' caused by the way physicians communicated with them regarding terminal diagnoses and palliative treatment. The goal of this research was to explore physicians' experiences of dealing with patient death in order to understand how such experiences affect them and their communication with patients. METHODS: This study used qualitative methods to conduct and analyse 10 individual, semistructured interviews with senior physicians from several specialty areas at a large, tertiary care hospital. The resulting themes were validated using member checks and expert review. RESULTS: This article presents five essential themes that provide a concise description of the lived experience of patient death for these physicians. INTERPRETATION: These themes indicate that physicians can experience very strong and lasting emotional reactions to some patient deaths, and also that patient death can elicit intense experiences related to professional responsibility and competence. A key finding is the description of a complex process of managing the balance between personal and professional reactions in the face of patient death. The implication is that difficulties negotiating this balance may lead to unintended lapses in compassion and suboptimal outcomes in patient care.
2014-09
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjspcare-2012-000326" target="_blank" rel="noreferrer">10.1136/bmjspcare-2012-000326</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
2014
Adult
Attitude Of Health Personnel
Attitude To Death
Backlog
BMJ Supportive & Palliative Care
Clinical encounter
Communication
Emotions
Female
Humans
Journal Article
Male
Middle Aged
Palliative Care/psychology
Physician-patient Relations
Psychological care
Terminal Care
Terminal Care/psychology
Whitehead PR
-
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/10.1017/S1478951509990289" target="_blank" rel="noreferrer">http://doi.org/10.1017/S1478951509990289</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
International comparison study on the primary concerns of terminally ill cancer patients in short-term life review interviews among Japanese, Koreans, and Americans
Publisher
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Palliative & Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Female; Humans; Male; United States; Aged; Middle Aged; Cross-Cultural Comparison; Life Change Events; Hospices; Spirituality; Religion and Psychology; Psychometrics; Japan; 80 and over; Psychological; Personality Inventory/statistics & numerical data; Republic of Korea; Interview; Terminal Care/psychology; Mental Recall; Neoplasms/ethnology/psychology; Social Values/ethnology
Creator
An entity primarily responsible for making the resource
Ando M; Morita T; Ahn SH; Marquez-Wong F; Ide S
Description
An account of the resource
OBJECTIVE: The aim of this study was to investigate the primary concerns of terminally ill cancer patients in a Short-Term Life Review among Japanese, Koreans, and Americans to develop intervention programs to be tailored to patients in other countries. METHOD: Twenty Japanese, 16 Korean, and 7 American terminally ill cancer patients who were in the hospice wards of general Christian hospitals in each country participated in this study. Medical staff members (nurses, social workers, clinical psychologists) performed Short-Term Life Review Interviews with each patient. Patients reviewed their lives in the first session, the interviewers made simple albums for each patient in the week following the first session, and patients and interviewers then confirmed the contents of the album. The treatment period was 1 week. Measurement instruments included the Functional Assessment Chronic Illness Therapy-Spiritual (FACIT-Sp) and the Hospital Anxiety and Depression Scale (HADS). The contents of each interview session were transcribed, and correspondence analysis and a significance test were conducted on these data to select characteristic words or phrases. RESULTS: Using the FACIT-Sp scores, the following concerns were chosen, in descending order of frequency. In Japan, primary concerns consisted of such ideas as "good human relationships and transcendence," "achievements and satisfaction," "good memories and important things," and "bitter memories." In Korea, "religious life," "right behavior for living," "strong consideration for children and will," and "life for living" were primary concerns. In the United States, "love, pride, will to children," "good, sweet memories," and "regret and a feeling of loss" were primary concerns. SIGNIFICANCE OF RESULTS: We clarify the differences among the primary concerns from the Short-Term Life Reviews, arguing that we can improve the spiritual well-being of terminally ill cancer patients by focusing on the primary concerns within each country.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/S1478951509990289" target="_blank" rel="noreferrer">10.1017/S1478951509990289</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
80 And Over
Aged
Ahn SH
Ando M
Backlog
Cross-cultural Comparison
Female
Hospices
Humans
Ide S
Interview
Japan
Journal Article
Life Change Events
Male
Marquez-Wong F
Mental Recall
Middle Aged
Morita T
Neoplasms/ethnology/psychology
Palliative & Supportive Care
Personality Inventory/statistics & numerical data
Psychological
Psychometrics
Religion and Psychology
Republic of Korea
Social Values/ethnology
Spirituality
Terminal Care/psychology
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
May 2017 List
URL Address
<a href="http://doi.org/10.1177/1359104507080981" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1359104507080981</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 Qualitative Investigation of Fathers' Experiences of Looking After a Child with a Life-Limiting Illness, In Process and In Retrospect
Publisher
An entity responsible for making the resource available
Clinical Child Psychology And Psychiatry
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Child; Female; Humans; Male; Grief; Adult; Attitude to Death; Professional-Family Relations; Life Change Events; Adaptation; Psychological; Caregivers/psychology; Palliative Care/psychology; social support; Gender Identity; Interview; Chronic Disease/psychology; Terminal Care/psychology; Marriage/psychology; Home Nursing/psychology; Fathers/psychology; father experience; Father-Child Relations
Creator
An entity primarily responsible for making the resource
Ware J; Raval H
Description
An account of the resource
Child life-limiting illnesses are those from which there is no reasonable hope of cure and from which children will die. Only recently have these illnesses been recognized as a discrete category and thus relatively little research has focused specifically upon this group of children and their families. This study utilized qualitative methods to investigate the experience of fathers, a group who are often under-represented in child illness research. The research aim was to gain an understanding of fathers' experiences of having a child with a life-limiting illness, its impact upon them, and their perceptions of service provision. The data from eight interviews was analysed using Interpretative Phenomenological Analysis. Four main themes emerged highlighting the fathers' feeling that their world had been turned upside down, how they lived with the knowledge their child would die, how men perceive themselves as different from women, and the fathers' wish to contribute to changing and improving how other fathers might cope with a child with a life-limiting illness. The results are discussed particularly in relation to gender issues. Various implications for clinical practice and service provision are considered. Suggestions are also made for future research.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1359104507080981" target="_blank" rel="noreferrer noopener">10.1177/1359104507080981</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
2007
Adaptation
Adult
Attitude To Death
Backlog
Caregivers/psychology
Child
Chronic Disease/psychology
Clinical Child Psychology And Psychiatry
father experience
Father-child Relations
Fathers/psychology
Female
Gender Identity
Grief
Home Nursing/psychology
Humans
Interview
Journal Article
Life Change Events
Male
Marriage/psychology
Palliative Care/psychology
Professional-family Relations
Psychological
Raval H
Social Support
Terminal Care/psychology
Ware 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/10.1542/peds.2004-0905" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2004-0905</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 and lingering controversies in pediatric end-of-life care
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
2005
Subject
The topic of the resource
Child; Humans; Analgesics; Data Collection; Attitude of Health Personnel; Medical Futility; Medical Staff; Withholding Treatment; Life Support Care; Medical; Practice Guidelines; ICU Decision Making; Pain/drug therapy; Opioid/therapeutic use; Specialties; Terminal Care/psychology; Nurses/psychology; Hospital/psychology
Creator
An entity primarily responsible for making the resource
Solomon MZ; Sellers DE; Heller KS; Dokken DL; Levetown M; Rushton C; Truog RD; Fleischman AR
Description
An account of the resource
OBJECTIVES: Professional societies, ethics institutes, and the courts have recommended principles to guide the care of children with life-threatening conditions; however, little is known about the degree to which pediatric care providers are aware of or in agreement with these guidelines. The study's objectives were to determine the extent to which physicians and nurses in critical care, hematology/oncology, and other subspecialties are in agreement with one another and with widely published ethical recommendations regarding the withholding and withdrawing of life support, the provision of adequate analgesia, and the role of parents in end-of-life decision-making. METHODS: Three children's hospitals and 4 general hospitals with PICUs in eastern, southwestern, and southern parts of the United States were surveyed. This population-based sample was composed of attending physicians, house officers, and nurses who cared for children (age: 1 month to 18 years) with life-threatening conditions in PICUs or in medical, surgical, or hematology/oncology units, floors, or departments. Main outcome measures included concerns of conscience, knowledge and beliefs, awareness of published guidelines, and agreement or disagreement with guidelines. RESULTS: A total of 781 clinicians were sampled, including 209 attending physicians, 116 house officers, and 456 nurses. The overall response rate was 64%. Fifty-four percent of house officers and substantial proportions of attending physicians and nurses reported, "At times, I have acted against my conscience in providing treatment to children in my care." For example, 38% of critical care attending physicians and 25% of hematology/oncology attending physicians expressed these concerns, whereas 48% of critical care nurses and 38% of hematology/oncology nurses did so. Across specialties, approximately 20 times as many nurses, 15 times as many house officers, and 10 times as many attending physicians agreed with the statement, "Sometimes I feel we are saving children who should not be saved," as agreed with the statement, "Sometimes I feel we give up on children too soon." However, hematology/oncology attending physicians (31%) were less likely than critical care (56%) and other subspecialty (66%) attending physicians to report, "Sometimes I feel the treatments I offer children are overly burdensome." Many respondents held views that diverged widely from published recommendations. Despite a lack of awareness of key guidelines, across subspecialties the vast majority of attending physicians (range: 92-98%, depending on specialty) and nurses (range: 83-85%) rated themselves as somewhat to very knowledgeable regarding ethical issues. CONCLUSIONS: There is a need for more hospital-based ethics education and more interdisciplinary and cross-subspecialty discussion of inherently complex and stressful pediatric end-of-life cases. Education should focus on establishing appropriate goals of care, as well as on pain management, medically supplied nutrition and hydration, and the appropriate use of paralytic agents. More research is needed on clinicians' regard for the dead-donor rule.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2004-0905" target="_blank" rel="noreferrer">10.1542/peds.2004-0905</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
2005
Analgesics
Attitude Of Health Personnel
Backlog
Child
Data Collection
Dokken DL
Fleischman AR
Heller KS
Hospital/psychology
Humans
ICU Decision Making
Journal Article
Levetown M
Life Support Care
Medical
Medical Futility
Medical Staff
Nurses/psychology
Opioid/therapeutic use
Pain/drug Therapy
Pediatrics
Practice Guidelines
Rushton C
Sellers DE
Solomon MZ
Specialties
Terminal Care/psychology
Truog RD
Withholding Treatment
-
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://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16510643" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16510643</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
Improving the quality of end-of-life care in the pediatric intensive care unit: parents' priorities and recommendations
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
2006
Subject
The topic of the resource
Child; Humans; infant; Parent-Child Relations; Questionnaires; Professional-Family Relations; Communication; Pediatric; adolescent; Preschool; Non-U.S. Gov't; Research Support; PedPal Lit; decision making; infant; Newborn; Parents/psychology; Intensive Care Units; Palliative Care/psychology; Terminal Care/psychology
Creator
An entity primarily responsible for making the resource
Meyer EC; Ritholz MD; Burns JP; Truog RD
Description
An account of the resource
OBJECTIVE: Despite recognition that dying children and their families have unique palliative care needs, there has been little empirical inquiry of parent perspectives to improve the quality of end-of-life care and communication. The purpose of this study was to identify and describe the priorities and recommendations for end-of-life care and communication from the parents' perspective. METHODS: This was a qualitative study based on parental responses to open-ended questions on anonymous, self-administered questionnaires, conducted at 3 pediatric ICUs in Boston, Massachusetts. Fifty-six parents whose children had died in PICUs after withdrawal of life support participated in this study. We measured parent-identified priorities for end-of-life care and communication. RESULTS: Parents identified 6 priorities for pediatric end-of-life care including honest and complete information, ready access to staff, communication and care coordination, emotional expression and support by staff, preservation of the integrity of the parent-child relationship, and faith. CONCLUSIONS: Parental priorities and recommendations offer simple yet compelling guidance to improve pediatric end-of-life clinical practice and research.
2006
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
Adolescent
Backlog
Burns JP
Child
Communication
Decision Making
Humans
Infant
Intensive Care Units
Journal Article
Meyer EC
Newborn
Non-U.S. Gov't
Palliative Care/psychology
Parent-child Relations
Parents/psychology
Pediatric
Pediatrics
PedPal Lit
Preschool
Professional-family Relations
Questionnaires
Research Support
Ritholz MD
Terminal Care/psychology
Truog RD
-
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/10.1089/10966210360510082" target="_blank" rel="noreferrer">http://doi.org/10.1089/10966210360510082</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
Issues in end-of-life care: patient, caregiver, and clinician perceptions
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Female; Humans; Male; Cohort Studies; Adult; Attitude of Health Personnel; Interpersonal Relations; Aged; Middle Aged; Attitude to Death; Physicians; Qualitative Research; Quality of Health Care; Cost of Illness; Washington; 80 and over; Non-U.S. Gov't; Research Support; Caregivers/psychology; Interviews; Family/psychology; Palliative Care/psychology; Terminal Care/psychology; Patients/psychology
Creator
An entity primarily responsible for making the resource
Farber SJ; Egnew TR; Herman-Bertsch JL; Taylor TR; Guldin GE
Description
An account of the resource
CONTEXT: Review of published research indicates the need to better incorporate patient and caregiver perceptions when providing end-of-life (EOL) care. Although considerable research regarding patient and caregiver experience of EOL has been done, little research has studied patients, caregivers, and clinicians as a connected system. OBJECTIVE: To study the perceptions of patients, caregivers, and physicians who are already connected with one another in an EOL care experience. DESIGN: Qualitative study consisting of in-depth, open-ended, face-to-face interviews and content analysis. SETTING: Community family practice residency programs in rural and urban settings in the Affiliated Family Practice Residency Network of the Department of Family Medicine, University of Washington School of Medicine. PARTICIPANTS: Forty-two patients and 39 caregivers facing EOL were interviewed either alone or together after referral by their physicians. Additionally, results of previously published findings from interviews with 39 family practice faculty were included. OUTCOME MEASURES: Perceptions of participants on EOL issues. RESULTS: Participants identified four primary issues related to their experience of EOL care: awareness of impending death, management/coping with daily living while attempting to maintain the management regimen, relationship fluctuations, and the personal experiences associated with facing EOL. Participants expected their physicians to be competent and to provide a caring relationship. CONCLUSIONS: Awareness of these crucial patient and caregiver EOL issues and expectations and how they differ from clinician perspectives can assist clinicians to appropriately explore and address patient/caregiver concerns and thereby provide better quality EOL care.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/10966210360510082" target="_blank" rel="noreferrer">10.1089/10966210360510082</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
80 And Over
Adult
Aged
Attitude Of Health Personnel
Attitude To Death
Backlog
Caregivers/psychology
Cohort Studies
Cost Of Illness
Egnew TR
Family/psychology
Farber SJ
Female
Guldin GE
Herman-Bertsch JL
Humans
Interpersonal Relations
Interviews
Journal Article
Journal of Palliative Medicine
Male
Middle Aged
Non-U.S. Gov't
Palliative Care/psychology
Patients/psychology
Physicians
Qualitative Research
Quality Of Health Care
Research Support
Taylor TR
Terminal Care/psychology
Washington
-
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.ccm.0000127262.16690.65" target="_blank" rel="noreferrer">http://doi.org/10.1097/01.ccm.0000127262.16690.65</a>
Dublin Core
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Title
A name given to the resource
Family satisfaction with family conferences about end-of-life care in the intensive care unit: increased proportion of family speech is associated with increased satisfaction
Publisher
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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
Cross-Sectional Studies; Female; Humans; Male; Intensive Care Units; Hospital Mortality; Questionnaires; Middle Aged; Communication; Critical Care; Consumer Satisfaction; Washington; Family/psychology; Terminal Care/psychology
Creator
An entity primarily responsible for making the resource
McDonagh JR; Elliott TB; Engelberg RA; Treece PD; Shannon SE; Rubenfeld GD; Patrick DL; Curtis JR
Description
An account of the resource
OBJECTIVE: Family members of critically ill patients report dissatisfaction with family-clinician communication about withdrawing life support, yet limited data exist to guide clinicians in this communication. The hypothesis of this analysis was that increased proportion of family speech during ICU family conferences would be associated with increased family satisfaction. DESIGN: Cross-sectional study. SETTING: We identified family conferences in intensive care units of four Seattle hospitals during which discussions about withdrawing life support were likely to occur. PARTICIPANTS: Participants were 214 family members from 51 different families. There were 36 different physicians leading the conferences, as some physicians led more than one conference. INTERVENTIONS: Fifty-one conferences were audiotaped. MEASUREMENTS: We measured the duration of time that families and clinicians spoke during the conference. All participants were given a survey assessing satisfaction with communication. RESULTS: The mean conference time was 32.0 mins with an sd of 14.8 mins and a range from 7 to 74 mins. On average, family members spoke 29% and clinicians spoke 71% of the time. Increased proportion of family speech was significantly associated with increased family satisfaction with physician communication. Increased proportion of family speech was also associated with decreased family ratings of conflict with the physician. There was no association between the duration of the conference and family satisfaction. CONCLUSIONS: This study suggests that allowing family members more opportunity to speak during conferences may improve family satisfaction. Future studies should assess the effect of interventions to increase listening by critical care clinicians on the quality of communication and the family experience.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.ccm.0000127262.16690.65" target="_blank" rel="noreferrer">10.1097/01.ccm.0000127262.16690.65</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
Backlog
Communication
Consumer Satisfaction
Critical Care
Critical Care Medicine
Cross-sectional Studies
Curtis JR
Elliott TB
Engelberg RA
Family/psychology
Female
Hospital Mortality
Humans
Intensive Care Units
Journal Article
Male
McDonagh JR
Middle Aged
Patrick DL
Questionnaires
Rubenfeld GD
Shannon SE
Terminal Care/psychology
Treece PD
Washington
-
Dublin Core
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Title
A name given to the resource
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://doi.org/10.12968/ijpn.2002.8.9.10687" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2002.8.9.10687</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
Experiences of families in which a child has a prolonged terminal illness: modifying factors.
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
2002
Subject
The topic of the resource
Child; Female; Humans; Male; Family; Communication; Longitudinal Studies; Non-U.S. Gov't; Research Support; Parents/psychology; Terminal Care/psychology; Neurodegenerative Diseases/nursing
Creator
An entity primarily responsible for making the resource
Steele R
Description
An account of the resource
A significant proportion of children requiring palliative care have neurodegenerative life-threatening illnesses (NLTIs). While most of their care is provided at home by their families over many years, there is a paucity of research examining families' experiences when a child with an NLTI is dying at home. In this grounded theory study, data were collected from eight families through observations and audiotaped interviews. Families moved through a process of 'navigating uncharted territory' as they lived with their dying child. The strategies that families used to manage this phenomenon were influenced by four intervening conditions that reflected the broader structural context of the phenomenon; relationships with healthcare providers, availability of information, gender differences, and communication between parents. Each condition facilitated or constrained the strategies that families were able to use. Implications for research, education and practice are discussed.
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2002.8.9.10687" target="_blank" rel="noreferrer">10.12968/ijpn.2002.8.9.10687</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
2002
Backlog
Child
Communication
Family
Female
Humans
International Journal of Palliative Nursing
Journal Article
Longitudinal Studies
Male
Neurodegenerative Diseases/nursing
Non-U.S. Gov't
Parents/psychology
Research Support
Steele R
Terminal Care/psychology
-
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/10.1542/peds.112.5.e371" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.112.5.e371</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
Circumstances surrounding end of life in a pediatric intensive care unit
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
2003
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Intensive Care Units; Adult; Parent-Child Relations; Withholding Treatment; Attitude to Death; Resuscitation Orders; Ontario; Analgesia; Treatment Failure; Pediatric; adolescent; Preschool; patient care team; decision making; infant; Newborn; ICU Decision Making; cause of death; Parents/psychology; Physicians/psychology; Terminal Care/psychology
Creator
An entity primarily responsible for making the resource
Garros D; Rosychuk RJ; Cox PN
Description
An account of the resource
OBJECTIVE: Approximately 60% of deaths in pediatric intensive care units follow limitation or withdrawal of life-sustaining treatment (LST). We aimed to describe the circumstances surrounding decision making and end-of-life care in this setting. METHODS: We conducted a prospective, descriptive study based on a survey with the intensivist after every consecutive death during an 8-month period in a single multidisciplinary pediatric intensive care unit. Summary statistics are presented as percentage, mean +/- standard deviation, or median and range; data are compared using the Mantel-Haenszel test and shown as survival curves. RESULTS: Of the 99 observed deaths, 27 involved failed cardiopulmonary resuscitation; of the remaining 72, 39 followed withdrawal/limitation (W/LT) of LST, 20 were do not resuscitate (DNR), and 13 were brain deaths (BDs). Families initiated discussions about forgoing LST in 24% (17 of 72) of cases. Consensus between caregivers and staff about forgoing LST as the best approach was reached after the first meeting with 51% (35 of 68) of families; 46% (31 of 68) required >or=2 meetings (4 not reported). In the DNR group, the median time to death after consensus was 24 hours and for W/LT was 3 hours. LST was later withdrawn in 11 of 20 DNR cases. The family was present in 76% (45 of 59) of cases when LST was forgone. The dying patient was held by the family in 78% (35 of 45) of these occasions. CONCLUSIONS: More than 1 formal meeting was required to reach consensus with families about forgoing LST in almost half of the patients. Families often held their child at the time of death. The majority of children died quickly after the end-of-life decision was made.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.112.5.e371" target="_blank" rel="noreferrer">10.1542/peds.112.5.e371</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
Adolescent
Adult
Analgesia
Attitude To Death
Backlog
Cause Of Death
Child
Cox PN
Decision Making
Female
Garros D
Humans
ICU Decision Making
Infant
Intensive Care Units
Journal Article
Male
Newborn
Ontario
Parent-child Relations
Parents/psychology
Patient Care Team
Pediatric
Pediatrics
Physicians/psychology
Preschool
Resuscitation Orders
Rosychuk RJ
Terminal Care/psychology
Treatment Failure
Withholding Treatment
-
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://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=12114382" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=12114382</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
Patients' perspectives on physician skill in end-of-life care: differences between patients with COPD, cancer, and AIDS
Publisher
An entity responsible for making the resource available
Chest
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Female; Male; Aged; Attitude to Death; Focus Groups; Medical; Non-U.S. Gov't; Pulmonary Disease; Human; Neoplasms/psychology; Truth Disclosure; Support; Middle Age; Ethics; Physician-Patient Relations; Terminal Care/psychology; Clinical Competence; Acquired Immunodeficiency Syndrome/psychology; Chronic Obstructive/psychology
Creator
An entity primarily responsible for making the resource
Curtis JR; Wenrich MD; Carline JD; Shannon SE; Ambrozy DM; Ramsey PG
Description
An account of the resource
OBJECTIVES: Patients' views of physician skill in providing end-of-life care may vary across different diseases, and understanding these differences will help physicians improve the quality of care they provide for patients at the end of life. The objective of this study was to examine the perspectives of patients with COPD, cancer, or AIDS regarding important aspects of physician skill in providing end-of-life care. DESIGN: Qualitative study using focus groups and content analysis based on grounded theory. SETTING: Outpatients from multiple medical settings in Seattle, WA. PATIENTS: Eleven focus groups of 79 patients with three diseases: COPD (n = 24), AIDS (n = 36), or cancer (n = 19). RESULTS: We identified, from the perspectives of patients, the important physician skills for high-quality end-of-life care. Remarkable similarities were found in the perspectives of patients with COPD, AIDS, and cancer, including the importance of emotional support, communication, and accessibility and continuity. However, each disease group identified a unique theme that was qualitatively more important to that group. For patients with COPD, the domain concerning physicians' ability to provide patient education stood out as qualitatively and quantitatively more important. Patients with COPD desired patient education in five content areas: diagnosis and disease process, treatment, prognosis, what dying might be like, and advance care planning. For patients with AIDS, the unique theme was pain control; for patients with cancer, the unique theme was maintaining hope despite a terminal diagnosis. CONCLUSIONS: Patients with COPD, AIDS, and cancer demonstrated many similarities in their perspectives on important areas of physician skill in providing end-of-life care, but patients with each disease identified a specific area of end-of-life care that was uniquely important to them. Physicians and educators should target patients with COPD for efforts to improve patient education about their disease and about end-of-life care, especially in the areas defined above. Physicians caring for patients with advanced AIDS should discuss pain control at the end of life, and physicians caring for patients with cancer should be aware of many patients' desires to maintain hope. Physician understanding of these differences will provide insights that allow improvement in the quality of care.
2002
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
2002
Acquired Immunodeficiency Syndrome/psychology
Aged
Ambrozy DM
Attitude To Death
Backlog
Carline JD
Chest
Chronic Obstructive/psychology
Clinical Competence
Curtis JR
Ethics
Female
Focus Groups
Human
Journal Article
Male
Medical
Middle Age
Neoplasms/psychology
Non-U.S. Gov't
Physician-patient Relations
Pulmonary Disease
Ramsey PG
Shannon SE
Support
Terminal Care/psychology
Truth Disclosure
Wenrich MD
-
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://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=12362125" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=12362125</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
Exploring documentation of end-of-life care of children with cancer
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
2002
Subject
The topic of the resource
Child; Female; Male; Disease Progression; Child Psychology; Medical Records; adolescent; Preschool; infant; Palliative Care/psychology; Human; Terminal Care/psychology; Neoplasms/nursing
Creator
An entity primarily responsible for making the resource
De Graves SD; Aranda S
Description
An account of the resource
This article presents the findings of a study that explored documentation surrounding the end-of-life care of children with cancer. An in-depth history audit of 18 children with cancer, who died from disease progression at a single tertiary paediatric centre during 1999, was performed to explore the extent and the ways in which the shift from cure to palliation was reflected in the child's medical record. The study found that while physical aspects of care were documented there was little evidence of the human-to-human aspects of care or processes of decision-making when cure was no longer a possibility. Relapse and disease progression were identified as critical junctures for families and health professionals and an important area for future research. Further, the medical records documented ill-defined periods of palliation, with the child's approaching death appearing as a gradual awareness rather than a distinct shift in goals of care from cure to palliation.
2002
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
2002
Adolescent
Aranda S
Backlog
Child
Child Psychology
De Graves SD
Disease Progression
Female
Human
Infant
International Journal of Palliative Nursing
Journal Article
Male
Medical Records
Neoplasms/nursing
Palliative Care/psychology
Preschool
Terminal Care/psychology
-
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/10.1136/adc.64.5.697" target="_blank" rel="noreferrer">http://doi.org/10.1136/adc.64.5.697</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
Life threatening illness and hospice care.
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
1989
Subject
The topic of the resource
Child; Humans; Attitude to Health; Parents; Professional-Family Relations; Longitudinal Studies; Hospices; Consumer Satisfaction; Respite Care; Family Health; adolescent; Preschool; Non-U.S. Gov't; Research Support; bereavement; retrospective studies; social support; Terminal Care/psychology; Marriage; Employment; Mental Disorders/psychology
Creator
An entity primarily responsible for making the resource
Stein A; Forrest GC; Woolley H; Baum JD
Description
An account of the resource
A retrospective study was undertaken of 25 families and their 26 ill children attending the first children's hospice in the United Kingdom. The study examined the family's perceptions of the care offered and the impact of chronic and life threatening illness. Eighteen (72%) of the families felt they had been well supported by the hospice and valued the family like atmosphere, perceiving the staff to be friendly, approachable, and helpful. The actual nature of hospice care, in an environment with other terminally ill children, was, however, considered a drawback for a few families. A number of families still had unmet needs, notably appropriate child minding when away from the hospice. The impact of chronic life threatening illness on the families was substantial. The parents (particularly the mothers), the index children, and their siblings all experienced much higher levels of psychological symptomatology than would have been expected from normal samples. While families felt greatly helped over symptom control, a proportion remained very worried about certain symptoms, particularly breathlessness, seizures, and pain. A high proportion of families were experiencing financial and employment difficulties as a result of their children's illnesses.
1989
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/adc.64.5.697" target="_blank" rel="noreferrer">10.1136/adc.64.5.697</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
1989
Adolescent
Archives of Disease in Childhood
Attitude To Health
Backlog
Baum JD
Bereavement
Child
Consumer Satisfaction
Employment
Family Health
Forrest GC
Hospices
Humans
Journal Article
Longitudinal Studies
Marriage
Mental Disorders/psychology
Non-U.S. Gov't
Parents
Preschool
Professional-family Relations
Research Support
Respite Care
Retrospective Studies
Social Support
Stein A
Terminal Care/psychology
Woolley H
-
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://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=6154844" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=6154844</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Helping a child to live whilst dying
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
1980
Subject
The topic of the resource
Child; Female; Grief; Attitude of Health Personnel; Attitude to Death; Child Psychology; Parents/psychology; Palliative Care/psychology; Human; Case Report; Pain/drug therapy; Neoplasm Metastasis; Terminal Care/psychology; Hospitalized/psychology; Brachial Plexus; Hospital Units/standards; Sarcoma/drug therapy/radiotherapy
Creator
An entity primarily responsible for making the resource
Chapman JA; Goodall J
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
1980
1980
Attitude Of Health Personnel
Attitude To Death
Backlog
Brachial Plexus
Case Report
Chapman JA
Child
Child Psychology
Female
Goodall J
Grief
Hospital Units/standards
Hospitalized/psychology
Human
Journal Article
Lancet
Neoplasm Metastasis
Pain/drug Therapy
Palliative Care/psychology
Parents/psychology
Sarcoma/drug therapy/radiotherapy
Terminal Care/psychology
-
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/s0738-3991(98)00125-6" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0738-3991(98)00125-6</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The attitude of young adults with chronic disease or handicaps towards enforced treatment and euthanasia
Publisher
An entity responsible for making the resource available
Patient Education And Counseling
Date
A point or period of time associated with an event in the lifecycle of the resource
1999
Subject
The topic of the resource
Female; Humans; Male; Adolescent Psychology; Attitude to Health; Medical Futility; Prognosis; Questionnaires; Attitude to Death; Physician's Role; Informed Consent; Israel; Case-Control Studies; quality of life; adolescent; decision making; Family/psychology; Treatment Refusal/psychology; Chronic Disease/psychology; Disabled Persons/psychology; Euthanasia/psychology; Terminal Care/psychology
Creator
An entity primarily responsible for making the resource
Brook U
Description
An account of the resource
One hundred fifty-nine young adults in the 17-18 year old age group suffering from chronic disease or handicap participated in this study which examined their attitudes towards enforced treatment and euthanasia in terminal patients. The comparison group included 120 healthy high school pupils of the same age group. A total of 42.6% of the chronic patients thought that enforced treatment was justified even if the patient didn't understand its importance and didn't want treatment (in comparison with 23.3% of the healthy pupils who felt the same way). Of the chronic patients, 54.4% thought that euthanasia was justified in consenting terminal patients (in comparison with 74.2% of the healthy pupils who felt the same way; P < 0.01). This may be explained by the feeling of total dependency of chronic patients upon medication and treatment. On the other hand, they may be opposed to euthanasia because of their own personal hope that a cure would be found for their severe and chronic condition. Both groups studied believed that physicians should always consider the subjective suffering of the patient and his family, as well as the short and long term prognosis when deciding about therapy.
1999
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0738-3991(98)00125-6" target="_blank" rel="noreferrer">10.1016/s0738-3991(98)00125-6</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).
Type
The nature or genre of the resource
Journal Article
1999
Adolescent
Adolescent Psychology
Attitude To Death
Attitude To Health
Backlog
Brook U
Case-Control Studies
Chronic Disease/psychology
Decision Making
Disabled Persons/psychology
Euthanasia/psychology
Family/psychology
Female
Humans
Informed Consent
Israel
Journal Article
Male
Medical Futility
Patient Education and Counseling
Physician's Role
Prognosis
Quality Of Life
Questionnaires
Terminal Care/psychology
Treatment Refusal/psychology
-
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.1469-8749.1991.tb05110.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1469-8749.1991.tb05110.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
Cornerstone care for families of children with life-threatening illness.
Publisher
An entity responsible for making the resource available
Developmental Medicine And Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
1991
Subject
The topic of the resource
Child; Humans; Grief; Professional-Family Relations; Longitudinal Studies; Sick Role; Continuity of Patient Care; Hospices; Adaptation; Psychological; patient care team; Family/psychology; social support; Terminal Care/psychology; Home Nursing/psychology; Brain Diseases/psychology/therapy; Neuromuscular Diseases/psychology/therapy; Public Assistance
Creator
An entity primarily responsible for making the resource
Woolley H; Stein A; Forrest GC; Baum JD
Description
An account of the resource
Forty-five families of children with life-threatening illnesses for up to 10 years were interviewed. The children required many medical disciplines, as well as social, educational and material provisions, and parents described the complex and often distressing job of obtaining that help. They were asked whether they regarded anyone as their co-ordinating cornerstone carer and which qualities of care they most valued. Over three-quarters identified one or more professionals as their cornerstone carer, the most common being paediatricians, domiciliary paediatric nurses and social workers. Nearly a quarter of the families reported not having a cornerstone carer. The ingredients of care especially valued by the parents are described. Families may be better helped and services more rationally used where a cornerstone carer gives support and helps to co-ordinate care in a way that leaves families still feeling in control of their own lives. The issue is raised as to whether patient need or cost/service limitation will be the primary determinant of the way this care is delivered in Britain.
1991
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1469-8749.1991.tb05110.x" target="_blank" rel="noreferrer">10.1111/j.1469-8749.1991.tb05110.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
1991
Adaptation
Backlog
Baum JD
Brain Diseases/psychology/therapy
Child
Continuity Of Patient Care
Developmental Medicine and Child Neurology
Family/psychology
Forrest GC
Grief
Home Nursing/psychology
Hospices
Humans
Journal Article
Longitudinal Studies
Neuromuscular Diseases/psychology/therapy
Patient Care Team
Professional-family Relations
Psychological
Public Assistance
Sick Role
Social Support
Stein A
Terminal Care/psychology
Woolley H
-
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.2001.7.5.12635" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2001.7.5.12635</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 need for palliative care for patients with non-cancer diseases: a review of the evidence
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
2001
Subject
The topic of the resource
Humans; Health Services Needs and Demand; Research Design; Patient Education as Topic; Palliative Care/psychology; Psychological; Stress; Terminal Care/psychology
Creator
An entity primarily responsible for making the resource
Luddington L; Cox S; Higginson I; Livesley B
Description
An account of the resource
The palliative care needs of patients with cancer are understood and managed well by specialist palliative care services. Patients dying of non-cancer diseases are rarely offered these services. A literature review was conducted to determine the physical and psychosocial problems of patients dying from non-cancer diseases. Studies were identified using a systematic keyword search of six electronic databases. Fourteen studies were identified and assessed according to rigour of design. Findings suggest that some patients dying of non-cancer have needs comparable with those dying of cancer. Low response rates, subject bias, and measurement bias mean that findings should be viewed with caution. More prospective, rigorously designed research is necessary to identify which patients with non-cancer diagnoses may benefit from specialist palliative care.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2001.7.5.12635" target="_blank" rel="noreferrer">10.12968/ijpn.2001.7.5.12635</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
2001
Backlog
Cox S
Health Services Needs And Demand
Higginson I
Humans
International Journal of Palliative Nursing
Journal Article
Livesley B
Luddington L
Palliative Care/psychology
Patient Education as Topic
Psychological
Research Design
Stress
Terminal Care/psychology
-
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/10.1542/peds.103.4.e46" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.103.4.e46</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
Variability in physician opinion on limiting pediatric life support
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
1999
Subject
The topic of the resource
Child; Cross-Sectional Studies; Female; Humans; Male; Intensive Care Units; Medical Staff; Prognosis; Questionnaires; Euthanasia; Fellowships and Scholarships; Regression Analysis; Pediatric; Empirical Approach; Death and Euthanasia; decision making; Pediatrics/statistics & numerical data; ICU Decision Making; Neoplasms/therapy; Terminal Care/psychology; Passive/psychology; Intensive Care/psychology; Hospital/psychology/statistics & numerical data; Medical Oncology/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Randolph AG; Zollo MB; Egger MJ; Guyatt GH; Nelson RM; Stidham GL
Description
An account of the resource
OBJECTIVE: We conducted this study to investigate how physicians in a pediatric intensive care unit (ICU) currently make decisions to withdraw and withhold life support. Consultation with the patient's primary caregiver often precedes decisions about withdrawal and limitation of life support in chronically ill patients. In these scenarios, the patient's primary caregiver was the pediatric oncologist. To evaluate the influence of subspecialty training, we compared the attitudes of the pediatric intensivists and the oncologists using scenarios describing critically ill oncology patients. DESIGN: Cross-sectional survey. Each physician was randomly assigned 4 of 8 potential case scenarios. SETTING: A total of 29 American pediatric ICUs. PARTICIPANTS: Pediatric intensive care and oncology attendings and fellows. INTERVENTION: Systematic manipulation of patient characteristics in two hypothetical case scenarios describing 6-year-old female oncology patients presenting to the ICU after the institution of mechanical ventilator support for acute respiratory failure. Cases 1 through 4 described a patient who, before admission, had a 99% projected 1-year probability of survival from her underlying cancer and suffered from severe neurologic disabilities. Cases 5 through 8 described a patient who was neurologically normal before admission and had a /=10% of respondents chose full aggressive management as the most appropriate level of care, whereas another >/=10% chose comfort measures only when viewing the same scenario. The most significant respondent factors affecting choices were professional status (attending vs fellow) and the self-rated importance of functional neurologic status. The majority of respondents (83%) believed that the intensive care and the oncology staff were usually in agreement at their institution about the level of intervention to recommend to the parents. (ABSTRACT TRUNCATED)
1999
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.103.4.e46" target="_blank" rel="noreferrer">10.1542/peds.103.4.e46</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
1999
Backlog
Child
Cross-sectional Studies
Death and Euthanasia
Decision Making
Egger MJ
Empirical Approach
Euthanasia
Fellowships And Scholarships
Female
Guyatt GH
Hospital/psychology/statistics & numerical data
Humans
ICU Decision Making
Intensive Care Units
Intensive Care/psychology
Journal Article
Male
Medical Oncology/statistics & numerical data
Medical Staff
Nelson RM
Neoplasms/therapy
Passive/psychology
Pediatric
Pediatrics
Pediatrics/statistics & numerical data
Prognosis
Questionnaires
Randolph AG
Regression Analysis
Stidham GL
Terminal Care/psychology
Zollo MB
-
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
n/a
URL Address
<a href="https://www.ncbi.nlm.nih.gov/pubmed/26679311" target="_blank" rel="noreferrer">https://www.ncbi.nlm.nih.gov/pubmed/26679311</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 decisions in perinatal care: A view from health-care providers in Mexico
Publisher
An entity responsible for making the resource available
Salud Publica De Mexico
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Attitude Of Health Personnel;decision Making;perinatal Care;terminal Care/psychology; Abortion; Adult; Aged; Attitude To Death; Euthanasia; Female; Fetal Diseases; Humans; Induced/psychology; Infant; Male; Mexico; Middle Aged; Newborn; Nurses/psychology; Palliative Care/psychology; Passive/psychology; Perinatal Death; Physicians/psychology; Pregnancy; Religion; Social Workers/psychology; Young Adult
Creator
An entity primarily responsible for making the resource
Grether P; Lisker R; Loria A; Alvarez-del-Rio A
Description
An account of the resource
OBJECTIVE: To examine the opinions of a perinatal health team regarding decisions related to late termination of pregnancy and severely ill newborns. MATERIALS AND METHODS: An anonymous questionnaire was administered to physicians, social workers, and nurses in perinatal care. Differences were evaluated using the chi square and Student's t tests. RESULTS: When considering severely ill fetuses and newborns, 82% and 93% of participants, respectively, opted for providing palliative care, whereas 18% considered feticide as an alternative. Those who opted for palliative care aimed to diminish suffering and those who opted for intensive care intended to protect life or sanctity of life. There was poor knowledge about the laws that regulate these decisions. CONCLUSIONS: Although there is no consensus on what decisions should be taken with severely ill fetuses or neonates, most participants considered palliative care as the first option, but feticide or induced neonatal death was not ruled out.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://www.ncbi.nlm.nih.gov/pubmed/26679311" target="_blank" rel="noreferrer">26679311</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
Abortion
Adult
Aged
Alvarez-del-Rio A
Attitude Of Health Personnel
Attitude To Death
Decision Making
Euthanasia
Female
Fetal Diseases
Grether P
Humans
Induced/psychology
Infant
Lisker R
Loria A
Male
Mexico
Middle Aged
Newborn
Nurses/psychology
Palliative Care/psychology
Passive/psychology
Perinatal Care
Perinatal Death
Physicians/psychology
Pregnancy
Religion
Salud Publica De Mexico
Social Workers/psychology
Terminal Care/psychology
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
July 2017 List
URL Address
<a href="https://doi.org/10.1186/s12904-015-0024-0" target="_blank" rel="noreferrer">https://doi.org/10.1186/s12904-015-0024-0</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
What Information Do Parents Need When Facing End-of-life Decisions For Their Child? A Meta-synthesis Of Parental Feedback
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
2015
Subject
The topic of the resource
Communication;Decision Making;Health Knowledge Attitudes Practice;Hope;Humans;Intensive Care Units Pediatric/organization & Administration;Needs Assessment;Parents/education;Parents/psychology;Terminal Care/methods;Terminal Care/psychology;Time Factors
Creator
An entity primarily responsible for making the resource
Xafis V; Wilkinson D; Sullivan J
Description
An account of the resource
BACKGROUND: The information needs of parents facing end-of-life decisions for their child are complex due to the wide-ranging dimensions within which such significant events unfold. While parents acknowledge that healthcare professionals are their main source of information, they also turn to a variety of additional sources of written information in an attempt to source facts, discover solutions, and find hope. Much has been written about the needs of parents faced with end-of-life decisions for their child but little is known about the written information needs such parents have. Research in the adult intensive care context has shown that written resources impact positively on the understanding of medical facts, including diagnoses and prognoses, communication between families and healthcare professionals, and the emotional wellbeing of families after their relative's death. METHODS: A meta-synthesis of predominantly empirical research pertaining to features which assist or impede parental end-of-life decisions was undertaken to provide insight and guidance in our development of written resources (short print and online comprehensive version) for parents. RESULTS: The most prominently cited needs in the literature related to numerous aspects of information provision; the quantity, quality, delivery, and timing of information and its provision impacted not only on parents' ability to make end-of-life decisions but also on their emotional wellbeing. The meta-synthesis supports the value of written materials, as these provide guidance for both parents and healthcare professionals in pertinent content areas. CONCLUSIONS: Further research is required to determine the impact that written resources have on parental end-of-life decision-making and on parents' wellbeing during and after their experience and time in the hospital environment.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1186/s12904-015-0024-0" target="_blank" rel="noreferrer">10.1186/s12904-015-0024-0</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).
2015
BMC Palliative Care
Communication
Decision Making
Health Knowledge Attitudes Practice
Hope
Humans
Intensive Care Units Pediatric/organization & Administration
July 2017 List
Needs Assessment
Parents/education
Parents/psychology
Sullivan J
Terminal Care/methods
Terminal Care/psychology
Time Factors
Wilkinson D
Xafis V
-
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
Understanding Death With Limited Experience In Life: Dying Children's And Adolescents' Understanding Of Their Own Terminal Illness And Death
Publisher
An entity responsible for making the resource available
Current Opinion In Supportive And Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Adolescent; Attitude To Death; Child; Communication; Fear; Humans; Palliative Care/organization & Administration; Palliative Care/psychology; Professional-family Relations; Prognosis; Terminal Care/organization & Administration; Terminal Care/psychology; Terminally Ill/legislation & Jurisprudence; Terminally Ill/psychology; Time Factors
Creator
An entity primarily responsible for making the resource
Bates Alan T; Kearney Julia A
Description
An account of the resource
PURPOSE OF REVIEW: An up-to-date summary of the literature on children's and adolescents' understanding of their own terminal illness and death. RECENT FINDINGS: Clinicians still find it difficult to speak with pediatric patients about death even though guidelines for facilitating communication on the topic exist. As a result, pediatric patients are less likely to develop a clear understanding of their illness and there is a disconnect between clinicians and parents about prognosis, even when clinicians have concluded there is no longer possibility for cure. Insufficient communication and poor understanding may increase the risk of patients feeling isolated, mistrustful and anxious, and deprive them of a role model who can communicate about painful issues or share difficult feelings. Despite these complexities, young people often show remarkable resiliency in the face of death and want to get the most out of the remaining time they have. SUMMARY: In addition to these most recent findings, this review examines the challenges in researching this topic, obstacles to patients receiving information about prognosis, and how physical symptoms affect patients' ability to develop an understanding. It also reviews sources of insight into pediatric patients' understanding including the development of concepts of death, fears about their own death, legal interpretations of what patients understand, and how terminally ill young people continue to treasure life. It concludes by addressing ways clinicians can use the knowledge we have to communicate well with dying children and adolescents and their families.
Identifier
An unambiguous reference to the resource within a given context
10.1097/SPC.0000000000000118
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
Adolescent
Attitude To Death
Bates Alan T
Child
Communication
Current Opinion in Supportive and Palliative Care
Fear
Humans
Kearney Julia A
May 2017 List
Palliative Care/organization & Administration
Palliative Care/psychology
Professional-family Relations
Prognosis
Terminal Care/organization & Administration
Terminal Care/psychology
Terminally Ill/legislation & jurisprudence
Terminally Ill/psychology
Time Factors
-
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 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
Development And Evaluation Of A Palliative Care Curriculum For Cystic Fibrosis Healthcare Providers.
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
2016
Subject
The topic of the resource
Attitude Of Health Personnel; Curriculum; Cystic Fibrosis/psychology; Cystic Fibrosis/therapy; Disease Management; Female; Health Personnel/education; Health Personnel/psychology; Humans; Male; Middle Aged; Needs Assessment; Palliative Care/methods; Palliative Care/psychology; Quality Of Life; Surveys And Questionnaires; Terminal Care/methods; Terminal Care/psychology; United States
Cystic Fibrosis; Education; End-of-life Care; Palliative Care
Creator
An entity primarily responsible for making the resource
Linnemann RW; O’Malley PJ; Friedman D; Georgiopoulos AM; Buxton D; Altstein
LL
Description
An account of the resource
BACKGROUND:
Primary palliative care refers to basic skills that all healthcare providers can employ to improve quality of life for patients at any stage of disease. Training in these core skills is not commonly provided to clinicians caring for cystic fibrosis (CF) patients. The objective of this study was to assess change in comfort with core skills among care team members after participation in CF-specific palliative care training focused on management of burdensome symptoms and difficult conversations.
METHODS:
A qualitative needs assessment was performed to inform the development of an 18-hour curriculum tailored to the chronicity and complexity of CF care. A 32-question pre- and post-course survey assessed CF provider comfort with the targeted palliative care skills in 5 domains using a 5-point Likert scale (1=very uncomfortable, 3=neutral, 5=very comfortable).
RESULTS:
Among course participants (n=16), mean overall comfort score increased by 0.9, from 3 (neutral) to 3.9 (comfortable) (p<0.001). Mean comfort level increased significantly (range 0.8 to 1.4) in each skill domain: use of supportive care resources, pain management, non-pain symptom management, communication, and psychosocial skills.
CONCLUSIONS:
CF-specific palliative care training was well received by participants and significantly improved self-assessed comfort with core skills.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1016/j.jcf.2015.03.005
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
Altstein
LL
Attitude Of Health Personnel
Buxton D
Curriculum
Cystic Fibrosis
Cystic Fibrosis/psychology
Cystic Fibrosis/therapy
Disease Management
Education
End-of-life Care
Female
Friedman D
Georgiopoulos AM
Health Personnel/education
Health Personnel/psychology
Humans
Journal of Cystic Fibrosis
Linnemann RW
Male
March 2016 List
Middle Aged
Needs Assessment
O’Malley PJ
Palliative Care
Palliative Care/methods
Palliative Care/psychology
Quality Of Life
Surveys And Questionnaires
Terminal Care/methods
Terminal Care/psychology
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
December 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
Family Conferences In The Neonatal Icu: Observation Of Communication Dynamics And Contributions.
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
2016
Subject
The topic of the resource
Communication; Critical Illness/psychology; Decision Making; Empathy; Female; Humans; Infant Newborn; Intensive Care Units Neonatal; Male; Parents/psychology; Professional-family Relations; Qualitative Research; Terminal Care/psychology
Creator
An entity primarily responsible for making the resource
Boss RD; Donohue PK; Larson SM; Arnold RM; Roter DL
Description
An account of the resource
Abstract
OBJECTIVES:
Clinicians in the neonatal ICU must engage in clear and compassionate communication with families. Empirical, observational studies of neonatal ICU family conferences are needed to develop counseling best practices and to train clinicians in key communication skills. We devised a pilot study to record and analyze how interdisciplinary neonatal ICU clinicians and parents navigate difficult conversations during neonatal ICU family conferences.
DESIGN:
We prospectively identified and audiotaped a convenience sample of neonatal ICU family conferences about "difficult news." Conversations were analyzed using the Roter interaction analysis system, a quantitative tool for assessing content and quality of patient-provider communication.
SETTING:
An urban academic children's medical center with a 45-bed level IV neonatal ICU.
SUBJECTS:
Neonatal ICU parents and clinicians.
INTERVENTIONS:
None.
MEASUREMENTS AND MAIN RESULTS:
We analyzed 19 family conferences that included 31 family members and 23 clinicians. The child's mother was included in all conferences, and a second parent, usually the father, was present in 13 conferences. All but one conference included multiple medical team members. On average, physicians contributed 65% of all dialogue, regardless of who else was present. Over half (56%) of this dialogue involved giving medical information; under 5% of clinician dialogue involved asking questions of the family, and families rarely (5% of dialogue) asked questions. Conversations were longer with the presence of nonphysician clinicians, but this did not increase the amount of dialogue about psychosocial information or increase parent dialogue.
CONCLUSIONS:
We collected a novel repository of audio-recorded neonatal ICU family meetings that offers insights into discussion content and process. These meetings were heavily focused on biomedical information even when interdisciplinary clinicians were present. Clinicians always talked more than parents, and no one asked many questions. Maximizing the participation of interdisciplinary clinicians in neonatal ICU family meetings may require explicit strategies. Methods to increase family engagement should be targeted.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1097/PCC.0000000000000617
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
Arnold RM
Boss RD
Communication
Critical Illness/psychology
December 2016 List
Decision Making
Donohue PK
Empathy
Female
Humans
Infant Newborn
Intensive Care Units Neonatal
Larson SM
Male
Parents/psychology
Pediatric Critical Care Medicine
Professional-family Relations
Qualitative Research
Roter DL
Terminal Care/psychology