1
40
13
-
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 2016 List
Dublin Core
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Title
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How Parents And Physicians Experience End-of-life Decision-making For Children With Profound Intellectual And Multiple Disabilities.
Publisher
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Research In Developmental Disabilities
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adolescent; Adult; Attitude Of Health Personnel; Attitude To Health; Cerebral Palsy; Child; Child Preschool; Decision Making; Disabled Children; Dissent And Disputes; Female; Humans; Infant; Infant Newborn; Intellectual Disability; Male; Middle Aged; Neurologists; Palliative Care; Parents; Pediatricians; Professional-family Relations; Qualitative Research; Resuscitation Orders; Retrospective Studies; Severity Of Illness Index; Terminal Care; Young Adult
Caregiver; End Of Life; Healthcare Professional; Intellectual Disability; Qualitative Research; Shared Decision-making
Creator
An entity primarily responsible for making the resource
Zaal-Schuller IH; Willems DL; Ewals FV; van Goudoever JB; de Vos MA
Description
An account of the resource
BACKGROUND:
End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions.
AIMS:
The objective of this research was to investigate the experiences of the parents and the involved physician during the end-of-life decision-making (EoLDM) process for children with PIMD.
METHODS:
In a retrospective, qualitative study, we conducted semi-structured interviews with the physicians and parents of 14 children with PIMD for whom an EoLD was made within the past two years.
RESULTS:
A long-lasting relationship appeared to facilitate the EoLDM process, although previous negative healthcare encounters could also lead to distrust. Parents and physicians encountered disagreements during the EoLDM process, but these disagreements could also improve the decision-making process. Most parents, as well as most physicians, considered the parents to be the experts on their child. In making an EoLD, both parents and physicians preferred a shared decision-making approach, although they differed in what they actually meant by this concept.
CONCLUSION:
The EoLDM process for children with PIMD can be improved if physicians are more aware of the specific situation and of the roles and expectations of the parents of children with PIMD.
Identifier
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DOI: 10.1016/j.ridd.2016.09.012
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Adolescent
Adult
Attitude Of Health Personnel
Attitude To Health
Caregiver
Cerebral Palsy
Child
Child Preschool
de Vos MA
Decision Making
Disabled Children
Dissent And Disputes
End Of Life
Ewals FV
Female
Healthcare Professional
Humans
Infant
Infant Newborn
Intellectual Disability
Male
Middle Aged
Neurologists
Palliative Care
Parents
Pediatricians
Professional-family Relations
Qualitative Research
Research in Developmental Disabilities
Resuscitation Orders
Retrospective Studies
September 2016 List
Severity Of Illness Index
Shared Decision-making
Terminal Care
van Goudoever JB
Willems DL
Young Adult
Zaal-Schuller IH
-
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 2017 List
Dublin Core
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Title
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End-of-life Decisions For Extremely Preterm Infants - A Matter Of Language, Gender And Education?
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Education; Ethical Decision Making; Gender; Language; Prematurity; Prematurity/dm [disease Management]; Terminal Care; Artificial Ventilation; Editorial; Education; Female; France; Gender; Germany; Human; Human Experiment; Infant; Italy; Language; Male; Physician Attitude; Priority Journal; Quality Of Life; Shared Decision-making; Switzerland
Creator
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Buhrer C
Identifier
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10.1111/apa.13717
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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
Acta Paediatrica
April 2017 List
Artificial Ventilation
Bührer C
Editorial
Education
Ethical Decision Making
Female
France
Gender
Germany
Human
Human Experiment
Infant
Italy
Language
Male
Physician Attitude
Prematurity
Prematurity/dm [disease Management]
Priority Journal
Quality Of Life
Shared Decision-making
Switzerland
Terminal Care
-
Dublin Core
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Title
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January 2020 List
Text
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Citation List Month
January 2020 List
URL Address
<a href="http://doi.org/10.1186/s12887-019-1849-0" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12887-019-1849-0</a>
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Title
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The clinical practice guideline palliative care for children and other strategies to enhance shared decision-making in pediatric palliative care; pediatricians' critical reflections
Publisher
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BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Children; Clinical practice guideline; Interviews; Palliative care; Qualitative; Shared decision-making
Creator
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Dreesens D; Veul L; Westermann J; Wijnands N; Kremer L; van der Weijden T; Verhagen E
Description
An account of the resource
BACKGROUND: Because of practice variation and new developments in palliative pediatric care, the Dutch Association of Pediatrics decided to develop the clinical practice guideline (CPG) palliative care for children. With this guideline, the association also wanted to precipitate an attitude shift towards shared decision-making (SDM) and therefore integrated SDM in the CPG Palliative care for children. The aim was to gain insight if integrating SDM in CPGs can potentially encourage pediatricians to practice SDM. Its objectives were to explore pediatricians' attitudes and thoughts regarding (1) recommendations on SDM in CPGs in general and the guideline Palliative care for children specifically; (2) other SDM enhancing strategies or tools linked to CPGs. METHODS: Semi-structured face-to-face interviews. Pediatricians (15) were recruited through purposive sampling in three university-based pediatric centers in the Netherlands. The interviews were audio-recorded and transcribed verbatim, coded by at least two authors and analyzed with NVivo. RESULTS: Some pediatricians considered SDM a skill or attitude that cannot be addressed by clinical practice guidelines. According to others, however, clinical practice guidelines could enhance SDM. In case of the guideline Palliative care for children, the recommendations needed to focus more on how to practice SDM, and offer more detailed recommendations, preferring a recommendation stating multiple options. Most interviewed pediatricians felt that patient decisions aids were beneficial to patients, and could ensure that all topics relevant to the patient are covered, even topics the pediatrician might not consider him or herself, or deems less important. Regardless of the perceived benefit, some pediatricians preferred providing the information themselves instead of using a patient decision aid. CONCLUSIONS: For clinical practice guidelines to potentially enhance SDM, guideline developers should avoid blanket recommendations in the case of preference sensitive choices, and SDM should not be limited to recommendations on non-treatment decisions. Furthermore, preference sensitive recommendations are preferably linked with patient decision aids.
Identifier
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<a href="http://doi.org/10.1186/s12887-019-1849-0" target="_blank" rel="noreferrer noopener">10.1186/s12887-019-1849-0</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).
2019
Bmc Pediatrics
Children
Clinical practice guideline
Dreesens D
Interviews
January 2020 List
Kremer L
Palliative Care
Qualitative
Shared Decision-making
van der Weijden T
Verhagen E
Veul L
Westermann J
Wijnands N
-
Dublin Core
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Title
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June 2020 List
Text
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Citation List Month
June 2020 List
URL Address
<a href="http://doi.org/10.1097/ANC.0000000000000707" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/ANC.0000000000000707</a>
Dublin Core
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Title
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Early for Everyone: Reconceptualizing Palliative Care in the Neonatal Intensive Care Unit
Publisher
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Advances in Neonatal Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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care planning; coping; neonatal intensive care; neonate; palliative care; parent; shared decision-making
Creator
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Quinn M; Weiss A B; Crist J D; Fortney C A
Description
An account of the resource
Background: Palliative care (PC) in the neonatal intensive care unit (NICU) is often provided exclusively to infants expected to die. Standards of care support providing PC early after diagnosis with any condition likely to impact quality of life.Purpose: To determine the state of early PC practice across populations to derive elements of early PC applicable to neonates and their families and demonstrate their application in practice.Search Strategy: Multiple literature searches were conducted from 2016 to 2019. Common keywords used were: palliative care; early PC; end of life, neonate; NICU; perinatal PC; pediatric PC; family-centered care; advanced care planning; palliative care consultant; and shared decision-making.Findings: Early PC is an emerging practice in adult, pediatric, and perinatal populations that has been shown to be helpful for and recommended by families. Three key elements of early PC in the NICU are shared decision-making, care planning, and coping with distress. A hypothetical case of a 24-week infant is presented to illustrate how findings may be applied. Evidence supports expansion of neonatal PC to include infants and families without terminal diagnoses and initiation earlier in care.Implications For Practice: Involving parents more fully in care planning activities and decision-making and providing structured support for them to cope with distress despite their child's prognosis are essential to early PC.Implications For Research: As early PC is incorporated into practice, strategies should be evaluated for feasibility and efficacy to improve parental and neonatal outcomes. Researchers should consider engaging NICU parent stakeholders in leading early PC program development and research.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/ANC.0000000000000707" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000707</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Advances in Neonatal Care
care planning
Coping
Crist J D
Fortney C A
June 2020 List
neonatal intensive care
Neonate
Palliative Care
Parent
Quinn M
Shared Decision-making
Weiss A B
-
Dublin Core
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Title
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July 2020 List
Text
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Citation List Month
July 2020 List
URL Address
<a href="http://doi.org/10.23736/S0026-4946.20.05825-9" target="_blank" rel="noreferrer noopener">http://doi.org/10.23736/S0026-4946.20.05825-9</a>
Dublin Core
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Title
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Decision-making at the limit of viability: an overview
Publisher
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Minerva pediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
ethics; fetal viability; neonatal intensive care; premature birth; shared decision-making
Creator
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Lemos A; Soares H; Guimaraes H
Description
An account of the resource
Babies born at the limit of viability have a high risk of morbidity and mortality. Despite great advances in science, the approach to these newborns remains challenging. Thus, this study reviewed the literature regarding the treatment of newborns at the limit of viability. There are several interventions that can be applied before and after birth to increase the baby's survival with the least sequelae possible, but different countries make different recommendations on the gestational age that each treatment should be given. There is more consensus on the extremities of viability, being that, at the lower extremity, comfort care is preferred and active care in newborns with higher gestational age. The higher the gestational age at birth, the higher the survival and survival without morbidity rates. At all gestational ages, it is important to take into account the suffering of these babies and to provide them the best quality of life possible. Sometimes palliative care is the best therapeutic approach. The parents of these babies should be included in the decision-making process, if they wish, always respecting their needs and wishes. Nevertheless, the process of having such an immature child can be very painful for parents, so it is also important to take into account their suffering and provide them with all the necessary support. This support should be maintained even after the death of the newborn.
Identifier
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<a href="http://doi.org/10.23736/S0026-4946.20.05825-9" target="_blank" rel="noreferrer noopener">10.23736/S0026-4946.20.05825-9</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Ethics
fetal viability
Guimaraes H
July 2020 List
Lemos A
Minerva Pediatrica
neonatal intensive care
premature birth
Shared Decision-making
Soares H
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
December 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2020 List
URL Address
<a href="http://doi.org/10.1542/hpeds.2020-0075" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/hpeds.2020-0075</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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Shared Decision-making With Parents of Hospitalized Children: A Qualitative Analysis of Parents' and Providers' Perspectives
Publisher
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Hospital 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
parent perspectives; provider perspectives; qualitative analysis; shared decision-making
Creator
An entity primarily responsible for making the resource
Hoang K; Halpern-Felsher B; Brooks M; Blankenburg R
Description
An account of the resource
OBJECTIVES: Shared decision-making (SDM) is the pinnacle of patient-centered care and has been shown to improve health outcomes, especially for children with chronic medical conditions. However, parents perceive suboptimal involvement during hospitalization. The objective was to explore the perspectives of parents of hospitalized children and their hospital providers on facilitators and barriers to SDM in the hospital and identify strategies to increase SDM. METHODS: A qualitative study was conducted by using semistructured interviews with parents of hospitalized children with and without complex chronic conditions and their pediatric hospital medicine faculty. Parents and faculty were matched and individually interviewed on the same day. Two investigators iteratively coded transcripts and identified themes using modified grounded theory, with an additional author reviewing themes. RESULTS: Twenty-seven parents and 16 faculty participated in the interviews. Four themes emerged: (1) parents and providers value different components of SDM; (2) providers assume SDM is easier with parents of children with medical complexity; (3) factors related to providers, parents, patients, and family-centered rounds were identified as barriers to SDM; and (4) parents and providers identified strategies to facilitate SDM in the hospital. CONCLUSIONS: There is a discrepancy between parents' and providers' understanding of SDM, with parents most valuing their providers' ability to actively listen and explain the medical issue and options with them. There are many barriers that exist that make it difficult for both parties to participate. Several strategies related to family-centered rounds have been identified that can be implemented into clinical practice to mitigate these barriers.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/hpeds.2020-0075" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2020-0075</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
Blankenburg R
Brooks M
December 2020 List
Halpern-Felsher B
Hoang K
Hospital Pediatrics
parent perspectives
provider perspectives
Qualitative Analysis
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
April 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
April 2021 List
URL Address
<a href="http://doi.org/10.1111/apa.15828" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.15828</a>
Dublin Core
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Title
A name given to the resource
Swiss neonatal caregivers express diverging views on parental involvement in shared decision-making for extremely premature infants
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
shared decision-making; attitudes; extremely premature infants; neonatal healthcare professionals; parental authority
Creator
An entity primarily responsible for making the resource
Fauchère JC; Klein SD; Hendriks MJ; Baumann-Hölzle R; Berger TMB; Bucher HU
Description
An account of the resource
AIM: Due to scarce available national data, this study assessed current attitudes of neonatal caregivers regarding decisions on life-sustaining interventions, and their views on parents' aptitude to express their infant's best interest in shared decision-making. METHODS: Self-administered web-based quantitative empirical survey. All 552 experienced neonatal physicians and nurses from all Swiss NICUs were eligible. RESULTS: There was a high degree of agreement between physicians and nurses (response rates 79% and 70%, respectively) that the ability for social interactions was a minimal criterion for an acceptable quality of life. A majority stated that the parents' interests are as important as the child's best interest in shared decision-making. Only a minority considered the parents as the best judges of what is their child's best interest. Significant differences in attitudes and values emerged between neonatal physicians and nurses. The language area was very strongly associated with the attitudes of neonatal caregivers. CONCLUSION: Despite clear legal requirements and societal expectations for shared decision-making, survey respondents demonstrated a gap between their expressed commitment to shared decision-making and their view on parental aptitude to formulate their infant's best interest. National guidelines need to address these barriers to shared decision-making to promote a more uniform nationwide practice.
Identifier
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<a href="http://doi.org/10.1111/apa.15828" target="_blank" rel="noreferrer noopener">10.1111/apa.15828</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).
2021
Acta Paediatrica
April 2021 List
Attitudes
Baumann-Hölzle R
Berger TMB
Bucher HU
extremely premature infants
Fauchère JC
Hendriks MJ
Klein SD
neonatal healthcare professionals
parental authority
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
July 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
July 2021 List
URL Address
<a href="http://doi.org/10.1111/apa.15061" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.15061</a>
Dublin Core
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Title
A name given to the resource
Survey of paediatricians caring for children with life-limiting conditions found that they were involved in advance care planning
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
2020
Subject
The topic of the resource
Child; Surveys and Questionnaires; Communication; Parents; communication; Pediatricians; paediatric palliative care; Advance Care Planning; shared decision-making
Creator
An entity primarily responsible for making the resource
Fahner JC; Rietjens JAC; van der Heide A; van Delden JJM; Kars MC
Description
An account of the resource
AIM: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions. METHODS: Paediatricians from five Dutch university hospitals and the national oncology centre completed a survey during May to September 2017, which investigated experiences with ACP in their most recent case of a deceased child and with ACP in general. RESULTS: A total of 207 paediatricians responded (36%). After exclusion of responses with insufficient data (n = 39), 168 were analysed (29%). These included experiences with an individual case in 86%. ACP themes were discussed with parents in all cases. Topics common to many cases were diagnosis, life expectancy, care goals, the parent's fears and code status. ACP conversations occurred with children in 23% of cases. The joy in living was the most frequent topic. The frequency of ACP conversations was insufficient according to 49% of the respondents. In 60%, it was stated that ACP has to result in a documented code status. CONCLUSION: Paediatricians reported having ACP conversations mainly with parents focusing on medical issues. There was limited insight into the child's preferences for care and treatment.
Identifier
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<a href="http://doi.org/10.1111/apa.15061" target="_blank" rel="noreferrer noopener">10.1111/apa.15061</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Acta Paediatrica
Advance Care Planning
Child
Communication
Fahner JC
July 2021 List
Kars MC
paediatric palliative care
Parents
Pediatricians
Rietjens JAC
Shared Decision-making
Surveys And Questionnaires
van Delden JJM
van der Heide 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
Special Edition #2 2022 List
Text
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Citation List Month
Special Edition #2
URL Address
<a href="http://doi.org/10.1542/hpeds.2020-0075" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/hpeds.2020-0075</a>
Dublin Core
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Title
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Shared Decision-making With Parents of Hospitalized Children: A Qualitative Analysis of Parents' and Providers' Perspectives
Publisher
An entity responsible for making the resource available
Hospital 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
parent perspectives; provider perspectives; qualitative analysis; shared decision-making
Creator
An entity primarily responsible for making the resource
Hoang K; Halpern-Felsher B; Brooks M; Blankenburg R
Description
An account of the resource
OBJECTIVES: Shared decision-making (SDM) is the pinnacle of patient-centered care and has been shown to improve health outcomes, especially for children with chronic medical conditions. However, parents perceive suboptimal involvement during hospitalization. The objective was to explore the perspectives of parents of hospitalized children and their hospital providers on facilitators and barriers to SDM in the hospital and identify strategies to increase SDM. METHODS: A qualitative study was conducted by using semistructured interviews with parents of hospitalized children with and without complex chronic conditions and their pediatric hospital medicine faculty. Parents and faculty were matched and individually interviewed on the same day. Two investigators iteratively coded transcripts and identified themes using modified grounded theory, with an additional author reviewing themes. RESULTS: Twenty-seven parents and 16 faculty participated in the interviews. Four themes emerged: (1) parents and providers value different components of SDM; (2) providers assume SDM is easier with parents of children with medical complexity; (3) factors related to providers, parents, patients, and family-centered rounds were identified as barriers to SDM; and (4) parents and providers identified strategies to facilitate SDM in the hospital. CONCLUSIONS: There is a discrepancy between parents' and providers' understanding of SDM, with parents most valuing their providers' ability to actively listen and explain the medical issue and options with them. There are many barriers that exist that make it difficult for both parties to participate. Several strategies related to family-centered rounds have been identified that can be implemented into clinical practice to mitigate these barriers.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/hpeds.2020-0075" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2020-0075</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
2022 Special Edition 2 - Parent Perspectives
Blankenburg R
Brooks M
Halpern-Felsher B
Hoang K
Hospital Pediatrics
parent perspectives
provider perspectives
Qualitative Analysis
Shared Decision-making
-
Dublin Core
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Title
A name given to the resource
December 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December List 2022
URL Address
<a href="http://doi.org/10.1007/s00431-022-04609-2" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00431-022-04609-2</a>
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Title
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What Does the Best Interests Principle of the Convention on the Rights of the Child Mean for Paediatric Healthcare? [Review]
Publisher
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European Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Best interests principle; Child; Children's rights; Convention on the Rights of the Child; Decision Making; Delivery of Health Care; Family; HIV Infections; Human Rights; Human rights in paediatrics; Humans; Paediatric ethics; Shared decision-making; United Nations
Creator
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Marz JW
Description
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The present review analyses the implications of the best interests of the child principle, which is one of the most widely discussed principles of medical ethics and human rights, for paediatric healthcare. As a starting point, it presents the interpretation of the best interests principle by the United Nations Committee on the Rights of the Child. On this basis, it points out possible fields of application of the best interests principle with regard to paediatric healthcare and discusses the potential difficulties in the application of the best interests principle. Based on this, it illustrates the implications of the best interests principle for paediatric healthcare through four case studies, which look at ethical dilemmas in paediatric gynaecology, end-of-life care, HIV care and genetic testing. Conclusion: The best interests principle requires action, inter alia, by health policymakers, professional associations, hospital managers and medical teams to ensure children receive the best possible healthcare. Whilst the best interests principle does not provide a conclusive solution to all ethical dilemmas in paediatric healthcare (as illustrated by the case studies), it provides children, medical teams, parents and families, and clinical ethicists with an indispensable framework for health care centred on the rights of the child. What is Known: * The best interests principle is one of the most widely discussed principles of medical ethics and human rights and one of the four general principles of the Convention on the Rights of the Child. What is New: * The present review discusses possible fields of application and potential difficulties of the best interests principle with regard to paediatric healthcare. * Based on this, it illustrates the implications of the best interests principle for paediatric healthcare through four case studies, which look at ethical dilemmas in paediatric gynaecology, end-of-life care, HIV care and genetic testing. Copyright © 2022. The Author(s).
Identifier
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<a href="http://doi.org/10.1007/s00431-022-04609-2" target="_blank" rel="noreferrer noopener">10.1007/s00431-022-04609-2</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).
2022
Best interests principle
Child
Children's Rights
Convention on the Rights of the Child
December List 2022
Decision Making
Delivery of Health Care
European Journal of Pediatrics
Family
HIV Infections
Human Rights
Human rights in paediatrics
Humans
Marz JW
Paediatric ethics
Shared Decision-making
United Nations
-
Dublin Core
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Title
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July 2023 List
Text
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Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.3390/children10050784" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10050784</a>
Dublin Core
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Title
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Ethical Dilemmas in Neonatal Care at the Limit of Viability
Publisher
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Children
Date
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2023
Subject
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end-of-life decisions; extremely preterm infants; Infant Newborn; limit of viability; shared decision-making
Creator
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Kornhauser CL; Lucovnik M
Description
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Advances in neonatal care have pushed the limit of viability to incrementally lower gestations over the last decades. However, surviving extremely premature neonates are prone to long-term neurodevelopmental handicaps. This makes ethics a crucial dimension of periviable birth management. At 22 weeks, survival ranges from 1 to 15%, and profound disabilities in survivors are common. Consequently, there is no beneficence-based obligation to offer any aggressive perinatal management. At 23 weeks, survival ranges from 8 to 54%, and survival without severe handicap ranges from 7 to 23%. If fetal indication for cesarean delivery appears, the procedure may be offered when neonatal resuscitation is planned. At a gestational age ≥24 weeks, up to 51% neonates are expected to survive the neonatal period. Survival without profound neurologic disability ranges from 12 to 38%. Beneficence-based obligation to intervene is reasonable at these gestations. Nevertheless, autonomy of parents should also be respected, and parental consent should be sought prior to any intervention. Optimal counselling of parents involves harmonized cooperation of obstetric and neonatal care providers. Every fetus/neonate and every pregnant woman are different and have the right to be considered individually when treatment decisions are being made.
Identifier
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<a href="http://doi.org/10.3390/children10050784" target="_blank" rel="noreferrer noopener">10.3390/children10050784</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).
2023
Children
End-of-life Decisions
Extremely Preterm Infants
Infant Newborn
July List 2023
Kornhauser CL
Limit of viability
Lucovnik M
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
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September 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
September List 2023
URL Address
<a href="http://doi.org/10.3389/fped.2023.1223710" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fped.2023.1223710</a>
Dublin Core
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Title
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Role of palliative care in centers performing maternal-fetal interventions
Publisher
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Frontiers in Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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palliative care; Palliative Care; quality of life; ethics; goals of care; shared decision-making; fetal center; fetal intervention; fetal surgery
Creator
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Rholl E; Leuthner SR
Description
An account of the resource
Advancements in maternal-fetal interventions have allowed for direct fetal access, shifting the focus of interventions from maternal health for fetal health to a focus on sole fetal/neonatal benefit. Given that access to the fetus can only be obtained through the mother, there are ethical considerations important to consider when counseling the maternal-fetal dyad. The goals of maternal-fetal interventions range from improved fetal/neonatal survival to decreased long-term morbidities and improved quality of life. However, interventions to improve quality of life may not always achieve their desired result. Additionally, maternal-fetal interventions have risks such as premature birth and other complications that should be heavily considered as they may offset the potential benefits of the procedure. While some families elect for a maternal-fetal intervention, doing every potential postnatal intervention may not be in alignment with their goals depending on the outcome of the intervention. Given the complex, value-laden decision-making that is crucial to counseling parents about decisions surrounding maternal-fetal interventions and subsequent neonatal care, palliative care specialists should be utilized in fetal centers. Palliative care specialists are trained to assist with complex, goal concordant decision-making and can guide families and medical teams through the decision points that arise during the treatment journey.
Identifier
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<a href="http://doi.org/10.3389/fped.2023.1223710" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1223710</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).
2023
Ethics
fetal center
fetal intervention
fetal surgery
Frontiers in Pediatrics
Goals Of Care
Leuthner SR
Palliative Care
Quality Of Life
Rholl E
September List 2051
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
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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/10.1016/j.cppeds.2023.101551" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.cppeds.2023.101551</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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Shared decision-making in pediatric palliative care
Publisher
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Current Problems in Pediatric and Adolescent Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Parents; End-of-life care; Palliative care; Shared decision-making
Creator
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Stroh JT; Carter BS
Description
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Shared decision-making (SDM) with parents and adolescents is normative in pediatric practice in North America. In this article we discuss how it is applicable to the practice of pediatric palliative care (PPC). As PPC itself is exemplary of patient-and-family-centered care, it often uses a SDM approach in clarifying patient and family preferences, goals, and values. This often occurs in an iterative process and across care environments, wherein the patient and family narrative is elaborated. Decisions are then made incorporating both evidence-based medical practice and the unique attributes and considerations of the patient and family.
Identifier
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<a href="http://doi.org/10.1016/j.cppeds.2023.101551" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2023.101551</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).
2023
Carter BS
Current Problems in Pediatric and Adolescent Health Care
End-of-life Care
February List 2024
Palliative Care
Parents
Shared Decision-making
Stroh JT