1
40
13
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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February 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1186/s12904-023-01280-8" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01280-8</a>
Dublin Core
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Title
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Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Canada; terminal care; article; controlled study; female; human; male; chronic disease; social support; palliative therapy; interview; parental attitude; health care policy; health care access; health service; adolescent; infant; physical activity; public health; qualitative research; coping behavior; coronavirus disease 2019; risk assessment; health status; personal experience; bereavement support; health care facility; family support; pandemic; infection control
Creator
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Rapoport A; Nicholas DB; Zulla RT
Description
An account of the resource
Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods: In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children's hospital in eastern Canada. Results: Twenty bereaved parents, consisting of 12 mothers and 8 fathers, participated in individual interviews between January and December 2021. Findings identified impacts of the COVID-19 pandemic on children's end-of-life care, experiences in hospital and at home, and family bereavement processes and experiences. Most parents experienced substantial worry about their child's physical status and the additional risk of COVID-19 given her/his vulnerability. Parents also struggled to navigate public health protocols as they attended to their child's needs and their family's desire for engagement and support. Key facilitators that helped families cope included a strong network of formal and informal supports. Conclusion: Implications highlight the need to critically reflect on pandemic care in the context of co-occurring end-of-life processes. Findings amplify the need to balance necessary infection control practices with access to essential supports for families.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-023-01280-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01280-8</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adolescent
Article
Bereavement Support
BMC Palliative Care
Canada
Child
Chronic Disease
Controlled Study
Coping Behavior
coronavirus disease 2019
family support
February List 2024
Female
Health Care Access
health care facility
Health Care Policy
Health Service
Health Status
Human
Infant
Infection Control
Interview
Male
Nicholas DB
Palliative Therapy
Pandemic
Parental Attitude
Personal Experience
physical activity
Public Health
Qualitative Research
Rapoport A
Risk Assessment
Social Support
Terminal Care
Zulla RT
-
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
July 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.3390/children9030445" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9030445</a>
Dublin Core
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Title
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Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
advance care planning; attitude to illness; caregiver; family centered care; parent; parental attitude; pediatric patient; psychosocial care; rare disease; adult; Advance Care Planning; article; body movement; child care; cohort analysis; collaborative care team; content analysis; conversation; disease burden; family decision making; feasibility study; female; human; human relation; palliative therapy; qualitative analysis; social connectedness; videorecording
Creator
An entity primarily responsible for making the resource
Fratantoni K; Livingston J; Schellinger SE; Aoun SM; Lyon ME
Description
An account of the resource
Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent's understanding of their child's illness, goals of care, and what mattered most to their child from the parent's perspective. Six families completed a feasibility study of the FAmily CEntered (FACE)-Rare pACP intervention. Qualitative content analysis was performed on transcripts of videotaped responses to the Respecting Choices Next Steps pACP Conversation facilitated conversation guide about the goals of care. Codes were grouped into themes, with direct participant quotations representing the themes. Five themes emerged: getting out and moving freely; feeling included and engaged; managing symptoms and disease burden; coordinating care among many care team members; and managing today and planning for the future. In the context of pACP, families reported that what mattered most to their children included the freedom of movement and human connection and engagement, while parents strived to be effective caregivers and advocates for their child with a rare and severely disabling disease.Copyright © 2022 by the authors. Licensee MDPI, Basel, Switzerland.
Identifier
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<a href="http://doi.org/10.3390/children9030445" target="_blank" rel="noreferrer noopener">10.3390/children9030445</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).
2022
Adult
Advance Care Planning
Aoun SM
Article
attitude to illness
body movement
Caregiver
Child Care
Children
Cohort Analysis
collaborative care team
Content Analysis
Conversation
Disease Burden
Family Centered Care
Family Decision Making
Feasibility Study
Female
Fratantoni K
Human
Human Relation
July List 2023
Livingston J
Lyon ME
Palliative Therapy
Parent
Parental Attitude
pediatric patient
psychosocial care
Qualitative Analysis
Rare Disease
Schellinger SE
social connectedness
videorecording
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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November 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2022 List
URL Address
<a href="http://doi.org/10.1097/PCC.0000000000002996" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/PCC.0000000000002996</a>
Dublin Core
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Title
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Parent-Reported Experience Measures of Care for Children with Serious Illnesses: A Scoping Review
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Child Care; Childhood Disease; Chronic Disease; Parental Attitude; Patient-Reported Outcome; Personal Experience; Caregiver Support; Child; Emergency Care; Empowerment; Health Care Delivery; Health Care Quality;Hospice Care; Hospital Care; Hospitalized Child; Human; Long Term Care; Neonatal Intensive Care Unit; Palliative Therapy; Review; Shared Decision Making; Systematic Review; Terminal Care
Creator
An entity primarily responsible for making the resource
Ang FJL; Finkelstein EA; Gandhi M
Description
An account of the resource
OBJECTIVE: This scoping review aimed to: 1) identify parent-reported experience measures (PaREMs) for parents of children with serious illnesses from peer-reviewed literature, 2) map the types of care experience being evaluated in PaREMs, 3) identify and describe steps followed in the measure development process, including where gaps lie and how PaREMs may be improved in future efforts, and 4) help service providers choose a PaREM suitable for their service delivery setting and strategy. DATA SOURCES: Relevant articles were systematically searched from PubMed, CINAHL, and Scopus EBSCOhost databases until June 10, 2021, followed by a manual reference list search of highly relevant articles. STUDY SELECTION: Abstracts were screened, followed by a full-text review using predetermined inclusion and exclusion criteria. DATA EXTRACTION: A standardized data extraction tool was used. DATA SYNTHESIS: Sixteen PaREMs were identified. There were large variances in the development processes across measures, and most have been developed in high-income, English-speaking Western countries. Most only assess the quality of acute inpatient care. Few measures can be used by multiple service providers or chronic care, and many do not capture all relevant domains of the parent experience. CONCLUSION(S): Service providers should integrate PaREMs into their settings to track and improve the quality of care. Given the multidisciplinary nature of pediatric care and the often-unpredictable disease trajectories of seriously ill children, measures that are applicable to multiple providers and varying lengths of care are essential for standardized assessment of quality of care and coordination among providers. To improve future PaREM development, researchers should follow consistent and methodologically robust steps, ideally in more diverse sociocultural and health systems contexts. Future measures should widen their scope to be applicable over the disease trajectory and to multiple service providers in a child's network of care for a comprehensive evaluation of experience.Copyright © 2022 Lippincott Williams and Wilkins. All rights reserved.
Identifier
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<a href="http://doi.org/10.1097/PCC.0000000000002996" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002996</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).
Child
Child Care
Chronic Disease
Systematic Review
Terminal Care
2022
Ang FJL
Caregiver Support
Childhood Disease
Emergency Care
empowerment
Finkelstein EA
Gandhi M
Health Care Delivery
Health Care Quality
Hospice Care
Hospital care
Hospitalized Child
Human
Long Term Care
Neonatal Intensive Care Unit
November 2022 List
Palliative Therapy
Parental Attitude
patient-reported outcome
Pediatric Critical Care Medicine
Personal Experience
Review
shared decision making
-
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
June 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
June 2019 List
URL Address
<a href="https://smw.ch/fileadmin/content/supplements/SMW_Suppl_222.pdf" target="_blank" rel="noreferrer noopener">https://smw.ch/fileadmin/content/supplements/SMW_Suppl_222.pdf</a>
Dublin Core
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Title
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A demanding act of love: Barriers and challenges in communication and decision-making for infants at the limits of viability
Publisher
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Swiss Medical Weekly
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
empathy; infant; decision making; semi structured interview; delivery room; responsibility; university hospital; parental attitude; prematurity; conference abstract; human; child; patient care; honesty
Creator
An entity primarily responsible for making the resource
Hendriks M J; Abraham A
Description
An account of the resource
Introduction: The birth of an extreme preterm infant often comes unexpectedly. Decisions, then, must often be made quickly and under circumstances that can be emotionally stressful for parents or morally burdensome for health care professionals. In the past decades, more emphasis has been placed on parental involvement in the decisionmaking, but a shared approach has remained understudied and difficult to implement in practice. Method(s): In order to explore parental attitudes and values in the end-of-life decision-making process, we conducted 13 qualitative semi-structured interviews with 20 parents. We recruited parents of extremely premature infants who were born alive and died in the delivery room or in the NICU at the University Hospital Zurich in the years 2013-2015. Result(s): Parents described factors that resulted in either a smooth or friction-laden decisional process. Some elements favored good communication between parents and the health care team, such as transparent information, empathy and honesty. Elements such as lacking of transparent information and lacking continuity of care discouraged good communication. Parents experienced the end-of-life decision-making process in divergent ways. Although most parents did consider to be involved in decision-making, they were nevertheless satisfied with the process. In contrast, few parents were involved in the decision-making. They appreciated and valued the possibility to take part in the decision, but they did not perceive the decision as an act of autonomy. Rather they felt it was part of their parental responsibility and a demanding act of love. Conclusion(s): The (non)involvement of parents in the end-of-life decision-making of their infant revealed that parental decision-making preferences are not homogenous, but highly case- and contextdependent. Health care professionals, who are closest to the parents, should aim to avoid either of these two opposites. Instead, they should enable and encourage parents' relationship with their child and create a space where parental preferences for involvement in end-of-life decisions can be assessed. Only then, it is considered a shared commitment.
2017
Abraham A
Child
conference abstract
Decision Making
Delivery Room
Empathy
Hendriks M J
Honesty
Human
Infant
June 2019 List
Parental Attitude
Patient Care
Prematurity
responsibility
Semi Structured Interview
Swiss Medical Weekly
University Hospital
-
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 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2018 List
URL Address
<a href="http://doi.org/10.1038/jp.2017.160" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/jp.2017.160</a>
Dublin Core
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Title
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Parental assessment of comfort in newborns affected by lifelimiting conditions treated by a standardized neonatal comfort care program
Publisher
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Journal of Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
life expectancy; Infant; Newborn; health survey; newborn; health care quality; self report; parental attitude; prospective study; parental behavior; newborn care; child parent relation; health program; human; female; male; adult; article; clinical article; life limiting disease; patient comfort; physical disease; fluid intake; health care delivery; infant nutrition; kangaroo care; peer review; standardization
Creator
An entity primarily responsible for making the resource
Parravicini E; Daho M; Foe G; Steinwurtzel R; Byrne M
Description
An account of the resource
Objective:To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program.Study Design:Participants were parents (n=35 families) who elected comfort care for their newborns diagnosed with life-limiting conditions. Standardized comfort measures including family/infant bonding, warmth, nutrition/hydration and pain/discomfort management were provided to all infants. Parents consented to receive a questionnaire with quantitative response options and open-ended questions.Results:Forty-two questionnaires (26 from mothers and 16 from fathers) were collected and analyzed. Most parents reported that their child was treated with respect, in a caring, peaceful and non-invasive environment. To the question 'Do you think that overall your baby received comfort' mode response was 'always'.Conclusion:Parents of infants with life-limiting conditions perceive that their babies experience comfort as a result of the care provided by the standardized Neonatal Comfort Care Program.
Identifier
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<a href="http://doi.org/10.1038/jp.2017.160" target="_blank" rel="noreferrer noopener">10.1038/jp.2017.160</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).
2018
Adult
April 2018 List
Article
Byrne M
Child Parent Relation
Clinical Article
Daho M
Female
fluid intake
Foe G
Health Care Delivery
Health Care Quality
health program
Health Survey
Human
Infant
Infant Nutrition
Journal Of Perinatology
kangaroo care
Life Expectancy
life limiting disease
Male
Newborn
Newborn Care
Parental Attitude
parental behavior
Parravicini E
Patient Comfort
Peer Review
physical disease
Prospective Study
Self Report
standardization
Steinwurtzel R
-
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/NCC.0000000000000146" target="_blank" rel="noreferrer">http://doi.org/10.1097/NCC.0000000000000146</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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Facebook Advertisements Recruit Parents of Children With Cancer for an Online Survey of Web-Based Research Preferences
Publisher
An entity responsible for making the resource available
Cancer Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Child; Female; Male; Income; adolescent; Human; oncology; Diseases; Sample Size; Population; Article; Child; Caregiver; advertizing; cancer research; Caregiver; childhood cancer; Human; Internet; neoplasm; parent; social media; social network; cancer palliative therapy; cancer patient; cancer recurrence; click; computer; Facebook; health survey; information processing; interpersonal communication; legal guardian; major clinical study; mobile phone; nurse; Only Child; Palliative therapy; parent; parental attitude; participant recruitment; Patient; priority journal; school child; social media; Video Recording; Video Recording
Creator
An entity primarily responsible for making the resource
Akard TF; Wray S; Gilmer Mary Jo
Description
An account of the resource
BACKGROUND:: Studies involving samples of children with life-threatening illnesses and their families face significant challenges, including inadequate sample sizes and limited diversity. Social media recruitment and Web-based research methods may help address such challenges yet have not been explored in pediatric cancer populations. OBJECTIVE:: This study examined the feasibility of using Facebook advertisements to recruit parent caregivers of children and teenagers with cancer. We also explored the feasibility of Web-based video recording in pediatric palliative care populations by surveying parents of children with cancer regarding (a) their preferences for research methods and (b) technological capabilities of their computers and phones. METHODS:: Facebook's paid advertising program was used to recruit parent caregivers of children currently living with cancer to complete an electronic survey about research preferences and technological capabilities. RESULTS:: The advertising campaign generated 3 897 981 impressions, which resulted in 1050 clicks at a total cost of $1129.88. Of 284 screened individuals, 106 were eligible. Forty-five caregivers of children with cancer completed the entire electronic survey. Parents preferred and had technological capabilities for Web-based and electronic research methods. Participant survey responses are reported. CONCLUSION:: Facebook was a useful, cost-effective method to recruit a diverse sample of parent caregivers of children with cancer. Web-based video recording and data collection may be feasible and desirable in samples of children with cancer and their families. IMPLICATIONS FOR PRACTICE:: Web-based methods (eg, Facebook, Skype) may enhance communication and access between nurses and pediatric oncology patients and their families.
2014-06
Identifier
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<a href="http://doi.org/10.1097/NCC.0000000000000146" target="_blank" rel="noreferrer">10.1097/NCC.0000000000000146</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2014
Adolescent
advertizing
Akard TF
Article
Backlog
Cancer Nursing
Cancer Palliative Therapy
Cancer Patient
Cancer Recurrence
Cancer Research
Caregiver
Child
Childhood Cancer
click
computer
Diseases
Facebook
Female
Gilmer Mary Jo
Health Survey
Human
Income
Information Processing
Internet
Interpersonal Communication
Journal Article
legal guardian
Major Clinical Study
Male
mobile phone
Neoplasm
Nurse
Oncology
Only Child
Palliative Therapy
Parent
Parental Attitude
participant recruitment
Patient
Population
Priority Journal
Sample Size
School Child
social media
social network
Video Recording
Wray S
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2018 List
URL Address
<a href="http://doi.org/10.1542/peds.2012-1916" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2012-1916</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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Parental perceptions of forgoing artificial nutrition and hydration during 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
2013
Subject
The topic of the resource
artificial feeding; concept formation; hydration; Terminal Care; Article; Child care; child death; clinical practice; Controlled Study; decision making; Female; Human; Male; parental attitude; personal experience; priority journal; Qualitative Research; quality of life; Religion; satisfaction
Creator
An entity primarily responsible for making the resource
Rapoport A; Shaheed J; Newman C; Rugg M; Steele R
Description
An account of the resource
BACKGROUND AND OBJECTIVE: Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under speci fi c circumstances. However, most of the evidence on FANH involves dying adults. There is a paucity of pediatric evidence to guide health care providers' and parents' decision-making around this practice. Objectives were (1) to explore the experiences of bereaved parents when a decision had been made to FANH during EOL care for their child and (2) to describe the perceived quality of death in these children, as reported by their parents. METHODS: This was a qualitative study using in-depth interviews with parents whose children died after a decision to FANH. Parental perceptions about the experience and their child's quality of death were explored. Interviews were audiotaped and transcribed, then data were analyzed by using interpretive description methodology. RESULTS: All parents were satisfi ed with their decision to FANH and believed that their child's death was generally peaceful and comfortable. The child's perceived poor quality of life was central to the decision to FANH, with feeding intolerance often contributing to this perception. Despite overall satisfaction, all parents had doubts and questions about the decision and benefited from ongoing assurances from the clinical team. CONCLUSIONS: FANH in children at the EOL is an acceptable form of palliation for some parents and may contribute to a death that is perceived to be peaceful and comfortable. In situations in which FANH may be a reasonable possibility, physicians should be prepared to introduce the option. Copyright _ 2013 by the American Academy of Pediatrics.
2013
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2012-1916" target="_blank" rel="noreferrer">10.1542/peds.2012-1916</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).
2013
Article
Artificial Feeding
Child Care
Child Death
Clinical Practice
Concept Formation
Controlled Study
Decision Making
Female
Human
Hydration
Male
March 2018 List
Newman C
Parental Attitude
Pediatrics
Personal Experience
Priority Journal
Qualitative Research
Quality Of Life
Rapoport A
Religion
Rugg M
Satisfaction
Shaheed J
Steele R
Terminal Care
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2018 List
URL Address
<a href="http://doi.org/10.1111/apa.14102" target="_blank" rel="noreferrer">http://doi.org/10.1111/apa.14102</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
Teamwork and conflicts in paediatric end-of-life care
Publisher
An entity responsible for making the resource available
Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
conflict; Pediatrics; teamwork; Terminal Care; conflict management; Coping Behavior; editorial; emotion; health care personnel; Human; Medical Decision Making; nurse; parental attitude; physician; physiotherapist; priority journal; psychologist
Creator
An entity primarily responsible for making the resource
Verhagen AAE
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/apa.14102" target="_blank" rel="noreferrer">10.1111/apa.14102</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).
Description
An account of the resource
2018
2018
Acta Paediatrica
Conflict
conflict management
Coping Behavior
Editorial
Emotion
Health Care Personnel
Human
March 2018 List
Medical Decision Making
Nurse
Parental Attitude
Pediatrics
Physician
physiotherapist
Priority Journal
Psychologist
Teamwork
Terminal Care
Verhagen AAE
-
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
Oncology
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
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1556/650.2017.30815" target="_blank" rel="noreferrer">http://doi.org/10.1556/650.2017.30815</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
[Difficulties in communication with parents of pediatric cancer patients during the transition to palliative care]
Publisher
An entity responsible for making the resource available
Orvosi Hetilap
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Attitude Of Health Personnel; Cancer Palliative Therapy; Childhood Cancer; Communication Barrier; Communication Barriers; Critical Illness/nu [nursing]; Palliative Care/mt [methods]; Parental Attitude; Physician-patient Relations; Article; Cancer Mortality; Cancer Patient; Cancer Therapy; Child; Critical Illness/px [psychology]; Disease Management; Dying; Empathy; Female; Human; Humans; Interpersonal Communication; Medical Expert; Oncologist; Palliative Care/px [psychology]; Parent-child Relations; Parents/px [psychology]; Pediatrician; Psychologist; Quality Of Health Care; Self Defense; Structured Interview
Creator
An entity primarily responsible for making the resource
Nyiro J; Hauser P; Zorgo S; Hegedus K
Description
An account of the resource
INTRODUCTION: Adequate communication by medical personnel is especially important at certain points during the treatment of childhood cancer patients. AIM: To investigate the timing and manner of communication with parents concerning the introduction of palliative care in pediatric oncology. METHOD: Structured interviews, containing 14 questions, were carried out with physicians working in pediatric oncology (n = 22). Codes were generated inductively with the aid of Atlas.ti 6.0 software. RESULTS: Interviews show a tendency of a one-step transition to palliative care following curative therapy. Another expert is usually involved in communication, most likely a psychologist. Regarding communication, there are expressions utilized or avoided, such as expressing clarity, self-defense and empathy. The communication of death and dying was the most contradictory. CONCLUSION: This was the first investigation regarding communication in pediatric palliative care in Hungary. Our results show that a modern perspective of palliative communication is present, but necessitates more time to become entrenched. Orv Hetil. 2017; 158(30): 1175-1181.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1556/650.2017.30815" target="_blank" rel="noreferrer">10.1556/650.2017.30815</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).
2017
Article
Attitude Of Health Personnel
Cancer Mortality
Cancer Palliative Therapy
Cancer Patient
Cancer Therapy
Child
Childhood Cancer
Communication Barrier
Communication Barriers
Critical Illness/nu [nursing]
Critical Illness/px [psychology]
Disease Management
Dying
Empathy
Female
Hauser P
Hegedus K
Human
Humans
Interpersonal Communication
Medical Expert
Nyiro J
Oncologist
Oncology 2017 List
Orvosi Hetilap
Palliative Care/mt [methods]
Palliative Care/px [psychology]
Parent-child Relations
Parental Attitude
Parents/px [psychology]
Pediatrician
Physician-patient Relations
Psychologist
Quality Of Health Care
Self Defense
Structured Interview
Zorgo S
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2017 List
URL Address
<a href="http://doi.org/10.1002/ajmg.a.37807" target="_blank" rel="noreferrer">http://doi.org/10.1002/ajmg.a.37807</a>
Notes
<p>Jacobs, Adam P<br />Subramaniam, Akila<br />Tang, Ying<br />Philips, Joseph B 3rd<br />Biggio, Joseph R<br />Edwards, Rodney K<br />Robin, Nathaniel H</p>
;
<p>Using Smart Source Parsing<br />( (pp 2016. Date of Publication: 01 Oct 2016</p>
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
Trisomy 18: A survey of opinions, attitudes, and practices of neonatologists
Publisher
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American Journal Of Medical Genetics Part A
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; Health Care Surveys; Neonatologists/px [psychology]; Physician Attitude; Practice Patterns Physicians'; Trisomy 18; Trisomy/di [diagnosis]; Adult; Article; Attitude To Abortion; Caucasian; Christian; Chromosomes Human Pair 18; Clinical Practice; Correlation Analysis; Demography; Disease Management; Disease Severity; Family; Female; Fetus Malformation; Human; Humans; Intellectual Impairment; Male; Marriage; Medical Decision Making; Medical Society; Neonatologist; Newborn Care; Normal Human; Outcome Assessment (health Care); Palliative Care; Palliative Therapy; Parental Attitude; Prenatal Diagnosis; Priority Journal; Race Difference; Resuscitation; Survival Rate; Trisomy 18; United States
Creator
An entity primarily responsible for making the resource
Jacobs AP; Subramaniam A; Tang Y; Philips JB 3rd; Biggio JR; Edwards RK; Robin NH
Description
An account of the resource
We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal anomalies and collected demographic information on participants, as well as their attitudes, and management choices given a series of vignettes beginning in the prenatal period. The survey was sent to 3,143 American Academy of Pediatrics Section on Neonatal-Perinatal Medicine members of which 409 (13%) completed the survey. While the response rate was rather low, our respondent pool was representative of the national neonatologist population. Respondents were predominately white (81%), married (88%), Christian (54%), had children (86%), and were pro-choice in terms of abortion (68%). Eighty-three percent (83%) of respondents thought that trisomy 18 is a lethal condition and 60% thought that treatment is futile. Seventy-five percent (75%) expected that the best neurodevelopmental outcome in the case of infant survival would be profound intellectual disability. Regarding neonatal care, 95% stated that they would recommend palliative care only. Ninety-five percent (95%) would never recommend or recommend only if asked full code resuscitation for a neonate with full trisomy 18, yet, 44% would comply partially or in full with a full code request for resuscitation measures. The demographic features that correlated most significantly with these responses were clinician race and years in practice. The attitudes toward and management of infants affected with trisomy 18 seem to be largely driven by parental attitudes and wishes. � 2016 Wiley Periodicals, Inc.
Identifier
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<a href="http://doi.org/10.1002/ajmg.a.37807" target="_blank" rel="noreferrer">10.1002/ajmg.a.37807</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Adult
American Journal of Medical Genetics Part A
Article
Attitude Of Health Personnel
Attitude To Abortion
Biggio JR
Caucasian
Christian
Chromosomes Human Pair 18
Clinical Practice
Correlation Analysis
December 2017 List
Demography
Disease Management
Disease Severity
Edwards RK
Family
Female
Fetus Malformation
Health Care Surveys
Human
Humans
Intellectual Impairment
Jacobs AP
Male
Marriage
Medical Decision Making
Medical Society
Neonatologist
Neonatologists/px [psychology]
Newborn Care
Normal Human
Outcome Assessment (health Care)
Palliative Care
Palliative Therapy
Parental Attitude
Philips JB 3rd
Physician Attitude
Practice Patterns Physicians'
Prenatal Diagnosis
Priority Journal
Race Difference
Resuscitation
Robin NH
Subramaniam A
Survival Rate
Tang Y
Trisomy 18
Trisomy/di [diagnosis]
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 2017 List
URL Address
<a href="http://doi.org/10.1038/jp.2017.77" target="_blank" rel="noreferrer">http://doi.org/10.1038/jp.2017.77</a>
Notes
<p>Using Smart Source Parsing<br />( (pp 2017. Date of Publication: 01 Oct 2017</p>
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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Approaches to end-of-life discussions with parents of a profoundly compromised newborn
Publisher
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Journal Of Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Bioethics; Doctor Patient Relation; Parental Attitude; Terminal Care; Family Decision Making; Human; Interpersonal Communication; Newborn; Note; Patient Autonomy; Physician Attitude; Prognosis
Creator
An entity primarily responsible for making the resource
Paris JJ; Pai V; Cummings BM; Batten J; Benitz WE
Identifier
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<a href="http://doi.org/10.1038/jp.2017.77" target="_blank" rel="noreferrer">10.1038/jp.2017.77</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).
2017
Batten J
Benitz WE
Bioethics
Cummings BM
December 2017 List
Doctor Patient Relation
Family Decision Making
Human
Interpersonal Communication
Journal Of Perinatology
Newborn
Note
Pai V
Parental Attitude
Paris JJ
Patient Autonomy
Physician Attitude
Prognosis
Terminal Care
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 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
Families Are Not The Barrier: Evaluating Attitudes Toward Early Integration Of Palliative Care In Pediatric Hematopoietic Stem Cell Transplant
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
2017
Subject
The topic of the resource
Family; Hematopoietic Stem Cell; Palliative Therapy; Anxiety; Attention; Child; Constipation; Diarrhea; Female; Graft Recipient; Human; Loss Of Appetite; Major Clinical Study; Male; Nausea; Pain; Parental Attitude; Quality Of Life; School Child; Speech; Symptom
Creator
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Levine D; Mandrell B; Sykes A; Baker J
Description
An account of the resource
Background: The benefits of early integration of palliative care (PC) in oncology have been well established yet, there remain significant barriers to PC integration, especially in the setting of pediatric hematopoietic stem cell transplant (HSCT). HSCT patients are prone to a great degree of treatment related toxicity and are at high risk for morbidity and mortality and, while ideally suited to benefit, inherent factors in this cure oriented field preclude the integration of PC services. Most notably, family receptivity to PC is often perceived as a barrier in HSCT yet there is no data on family attitudes toward PC in this setting. Objectives: This study aimed to evaluate perceived symptom burden in the first month of pediatric HSCT, as well as patient and parent attitudes toward early PC integration in pediatric HSCT. Design/Method: After IRB approval, development and pre-testing, novel survey tools were administered to HSCT patients and parents. Eligibility criteria included parent of an HSCT recipient < age 10 or patient/parent dyad for patients aged10 years or older, time from HSCT >1 month and <1 year, English-speaking, and consent/assent. Data was assessed for trends in response content frequencies, percentages and parent/child concordance. Results: 81 total participants were enrolled, including 60 parents and 21 patients. Analysis revealed high levels of perceived symptom related suffering in the first month of HSCT with suffering from: nausea 98.3%, loss of appetite 93.3%, pain 90%, diarrhea 88.3%, depression 75%, anxiety 70%, and constipation 41.7%. 85.7% of patients and 73.4% parents expressed that a great deal or a lot of attention should be paid to quality of life from the start of HSCT. The majority of patient and parent respondents (52.4/50%) indicated they would likely want to meet with PC early in HSCT and very few reported definite opposition (0% children, 3.3% parents). Conclusion: Pediatric HSCT patients experience a high degree of symptom related suffering, perceive quality of life as a high priority, and are largely in favor of early PC involvement. Our findings suggest that family receptivity should not be a barrier to early PC in pediatric HSCT and that aggressive cure directed therapy can and should be accompanied by aggressive quality of life directed care through early PC integration.
Identifier
An unambiguous reference to the resource within a given context
10.1002/pbc.26591
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).
2017
anxiety
Attention
Baker J
Child
Constipation
Diarrhea
Family
Female
Graft Recipient
Hematopoietic Stem Cell
Human
Levine D
Loss Of Appetite
Major Clinical Study
Male
Mandrell B
Nausea
October 2017 List
Pain
Palliative Therapy
Parental Attitude
Pediatric Blood and Cancer
Quality Of Life
School Child
Speech
Sykes A
Symptom
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2017 List
Notes
<p>Using Smart Source Parsing ( (pp 2017. Date of Publication: July 2017</p>
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 Impact Of A Sibling's Life-limiting Genetic Condition On Adult Brothers And Sisters
Publisher
An entity responsible for making the resource available
American Journal Of Medical Genetics Part A
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Family Attitude; Sibling; Sibling Attitude; Trisomy 13; Trisomy 18; Adult; Article; Brother; Coping Behavior; Female; Genetic Disorder; Grief; Human; Male; Parental Attitude; Peer Group; Priority Journal; Psychological Resilience; Qualitative Analysis; Sister; Structured Interview; Wellbeing
Creator
An entity primarily responsible for making the resource
Brown E; Coad J; Franklin A
Description
An account of the resource
It is estimated that rare diseases affect the lives of over three million people in the United Kingdom. Of these, a significant proportion are children and young people with genetic life-limiting or life-shortening conditions. This study used a qualitative approach with in-depth semi-structured interviews to explore the experiences of 10 adult siblings of a baby diagnosed with Trisomy 13 (Patau syndrome) or Trisomy 18 (Edward syndrome). Findings illustrate that parental grief from the time of their child's diagnosis onward is also experienced by siblings. Although young adults may have conflicting feelings as a bereaved sibling, there is evidence that the experience impacts on their world views and their attitudes about prospective and expectant parenthood. The study highlights the importance of providing siblings with short-term and long-term support from the time of their brother's or their sister's diagnosis onward and provides new understanding about benefit of professional and peer support in helping young adults develop resilience and coping strategies.
Identifier
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10.1002/ajmg.a.38213
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).
2017
Adult
American Journal of Medical Genetics Part A
Article
Brother
Brown E
Coad J
Coping Behavior
Family Attitude
Female
Franklin A
Genetic Disorder
Grief
Human
Male
Parental Attitude
Peer Group
Priority Journal
Psychological Resilience
Qualitative Analysis
September 2017 List
Sibling
Sibling Attitude
Sister
Structured Interview
Trisomy 13
Trisomy 18
Wellbeing