1
40
27
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Dublin Core
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Title
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2023 Special Edition 4 - Parent Perspectives List
Text
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Citation List Month
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2021-003019" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjspcare-2021-003019</a>
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Title
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Experiences of fathers of children with a life-limiting condition: a systematic review and qualitative synthesis
Publisher
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BMJ Supportive and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Humans; Child; Female; Male; Qualitative Research; Emotions; *Neoplasms; Parents/px [Psychology]; Mothers/px [Psychology]; *Fathers; Fathers/px [Psychology]
Creator
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Fisher, Victoria; Fraser, Lorna; Taylor, Johanna
Description
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BACKGROUND: Children with a life-limiting condition often require extensive and complex care, much of which is provided by their parents at home. There is a growing body of research that aims to understand the experiences of these parents, but the majority of this research is from mothers' perspectives, meaning that fathers' experiences are not well understood., OBJECTIVES: To identify and synthesise findings from existing qualitative studies that have explored the experiences of fathers of children with a life-limiting condition., METHODS: A systematic review of qualitative research was conducted using thematic synthesis. Searches were conducted in MEDLINE, CINAHL, EMBASE, PsycINFO and Social Science Citation Index., RESULTS: Findings from 30 studies were included, representing the experiences of 576 fathers of children with a range of diagnoses including cancer, cystic fibrosis, genetic and neurological conditions. Themes detailed fathers' experiences of uncertainty and shock around the time of their child's diagnosis, their accounts of a 'new normal', difficulties in discussing their emotions, forming relationships with and seeking support from professionals and working fathers' role conflicts. They discussed the life-changing nature of their child's diagnosis, an event that affected all aspects of their lives from everyday activities, to their relationships, spirituality, values and ambitions., CONCLUSIONS: Fathers experience many difficulties in response to their child's diagnosis and ongoing treatment. Findings highlight the need for healthcare professionals to recognise individual family dynamics and the evolving role of the father. Fathers' responses are not widely understood, and research that directly addresses their own well-being is warranted. Copyright � Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2021-003019" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-003019</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).
*Fathers
*Neoplasms
2023
2023 SE4 - Parent Perspectives
BMJ Supportive and Palliative Care
Child
Emotions
Fathers/px [Psychology]
Female
Fisher, Victoria
Fraser, Lorna
Humans
Male
Mothers/px [Psychology]
Parents/px [psychology]
Qualitative Research
Taylor, Johanna
-
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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August 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
August List 2023
URL Address
<a href="http://doi.org/10.12968/ijpn.2023.29.6.282" target="_blank" rel="noreferrer noopener"> http://doi.org/10.12968/ijpn.2023.29.6.282</a>
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Title
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Paediatric end-of-life care at home
Publisher
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International Journal of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Child; Home Care Services; Terminal Care; Palliative Care/px [Psychology]; Parents/px [Psychology]; Terminal Care/px [Psychology]; Hospice Care; Terminal Care; Death
Creator
An entity primarily responsible for making the resource
Larsen SHK; Bording I; Bjergegaard M; Buchreitz J; Mouritzen BT; Brix L; Jespersen BA; Neergaard MA
Description
An account of the resource
BACKGROUND: A terminally ill child should have the possibility to be at home with their family during the end of life. Provision of care from primary care nurses (PCNs) is crucial, but no model exists on how specialised paediatric palliative care teams (SPPCTs) support the PCNs to perform this task., AIM: To investigate how PCNs evaluated a shared care model between a SPPCT and PCNs in paediatric end-of-life care., METHOD: A 23-item questionnaire was distributed to PCNs involved in care of 14 terminally ill children in November 2019 and January 2020. Descriptive statistics were used., FINDINGS: A total of 20 questionnaires were returned from nurses who agreed/completely agreed that an introductory meeting made them better prepared (78.9%) to deal with the death of a child in their care, cooperating with family members (70.6%) and dealing with own emotions (73.7%). A total of 69.2% felt the meeting helped coping with parents' pressure and 88.9% stated that the trajectory changed how they saw themselves involved in future paediatric palliative care., CONCLUSION: The shared care model was evaluated positively. Clear agreements and specialist support were prerequisites for good trajectories at the end of life. Further research is needed to investigate if the shared care model optimises palliative care and security in relation to child and family.
Identifier
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<a href="http://doi.org/10.12968/ijpn.2023.29.6.282" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2023.29.6.282</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
August List 2037
Bjergegaard M
Bording I
Brix L
Buchreitz J
Child
Death
home care services
Hospice Care
Humans
International Journal of Palliative Nursing
Jespersen BA
Larsen SHK
Mouritzen BT
Neergaard MA
Palliative Care/px [psychology]
Parents/px [psychology]
Terminal Care
Terminal Care/px [psychology]
-
Dublin Core
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Title
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August 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
August List 2023
URL Address
<a href="http://doi.org/10.1177/13674935211059041" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935211059041</a>
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Title
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Crossroads of parental decision making: Intersections of hope, communication, relationships, and emotions
Publisher
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Journal of Child Health 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
Humans; Infant; Decision Making; Communication; Qualitative Research; Uncertainty; Emotions; Parents; Parents/px [Psychology]; Decision Making
Creator
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Koch A; Albrecht T; Kozhumam AS; Son H; Brandon D; Docherty SL
Description
An account of the resource
Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this qualitative descriptive study explores how parent and provider hope may influence decision making and care of a child born with CLTCs. A total of 193 interviews from 46 individuals (parents, nurses, physicians, and nurse practitioners) responsible for the care of 11 infants with complex congenital heart disease (CCHD) were analyzed to understand how hope features in experiences related to communication, relationships, and emotions that influence decision making. Overall, parental hope remained strong and played a pivotal role in parental decision making. Parents and professional healthcare providers expressed a range of emotions that appeared to be integrally linked to hope and affected decision making. Providers and parents brought their own judgments, perceptions, and measure of hope to relationships, when there was common ground for expressing, and having, hope, shared decision making was more productive and they developed more effective relationships and communication. Relationships between parents and providers were particularly influenced by and contributory to hope. Communication between parents and providers was also responsible for and responsive to hope.
Identifier
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<a href="http://doi.org/10.1177/13674935211059041" target="_blank" rel="noreferrer noopener">10.1177/13674935211059041</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
Albrecht T
August List 2036
Brandon D
Communication
Decision Making
Docherty SL
Emotions
Humans
Infant
Journal Of Child Health Care
Koch A
Kozhumam AS
Parents
Parents/px [psychology]
Qualitative Research
Son H
Uncertainty
-
Dublin Core
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Title
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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/10.1186/s12904-023-01183-8" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01183-8</a>
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Title
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Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement
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
Bereavement; Perinatal Death; Terminal Care; Anxiety; Bereavement; Depression; Female; Humans; Infant; Infant Newborn; Parents/px [Psychology]; Perception; Prospective Studies; Terminal Care; Terminal Care/px [Psychology]
Creator
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Cambonie G; Desage C; Thaller P; Lemaitre A; de Balanda KB; Combes C; Gavotto A
Description
An account of the resource
BACKGROUND: Neonatal death is often preceded by end-of-life medical decisions. This study aimed to determine whether the context of death - after a decision of withholding or withdrawing life-sustaining treatment (WWLST) or despite maximum care - was associated with subsequent risk of parental anxiety or depression. The secondary objective was to assess parents' perceptions of end-of-life care according to death context., METHODS: Prospective single center observational study of all neonatal deaths in a neonatal intensive care unit over a 5-year period. Data were collected during hospitalization and from face-to-face interviews with parents 3 months after the infant's death. Anxiety and depression were assessed using Hospital Anxiety and Depression Scale (HADS) questionnaires, completed by parents 5 and 15 months after death., RESULTS: Of 179 deaths, 115 (64%) occurred after the WWLST decision and 64 (36%) despite maximum care. Parental satisfaction with newborn care and received support by professionals and relatives was higher in the first condition. Sixty-one percent of parents (109/179) attended the 3-month interview, with the distribution between groups very close to that of hospitalization. The completion rates of the HADS questionnaires by the parents who attended the 3-month interview were 75% (82/109) at 5 months and 65% (71/109) at 15 months. HADS scores at 5 months were consistent with anxiety in at least one parent in 73% (60/82) of cases and with depression in 50% (41/82). At 15 months, these rates were, respectively, 63% (45/71) and 28% (20/71). Risk of depression at 5 months was lower after a WWLST decision (OR 0.35 [0.14, 0.88], p = 0.02). Explicit parental agreement with the WWLST decision had an equivocal impact on the risk of anxiety at 5 months, being higher when expressed during hospitalization, but not at the 3-month interview., CONCLUSIONS: Context of death has a significant impact on the emotional experience of parents after neonatal loss, which underlines the importance of systematic follow-up conversations with bereaved parents. Copyright © 2023. The Author(s).
Identifier
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<a href="http://doi.org/10.1186/s12904-023-01183-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01183-8</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
anxiety
Bereavement
BMC Palliative Care
Cambonie G
Combes C
de Balanda KB
Depression
Desage C
Female
Gavotto A
Humans
Infant
Infant Newborn
July List 2023
Lemaitre A
Parents/px [psychology]
Perception
Perinatal Death
Prospective Studies
Terminal Care
Terminal Care/px [psychology]
Thaller P
-
Dublin Core
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Title
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2022 Special Edition 3 - Oncology List
Text
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Citation List Month
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.10.016" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2021.10.016</a>
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One Size Doesn't Fit All in Early Pediatric Oncology Bereavement Support
Publisher
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Journal of Pain and Symptom Management
Date
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2022
Creator
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Helton G; Beight L; Morris SE; Wolfe J; Snaman JM
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.10.016" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.10.016</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
2022 Special Edition 3 - Oncology List
Beight L
Bereavement
Child
Female
Grief
Helton G
Humans
Journal of Pain and Symptom Management
Male
Morris SE
Neoplasms
Neoplasms/px [psychology]
Parents/px [psychology]
Snaman JM
Terminal Care
Wolfe J
-
Dublin Core
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Title
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November 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
November 2019 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>
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Parental assessment of comfort in newborns affected by life-limiting 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
Palliative Care/mt [Methods]; Parents/px [Psychology]; Patient Comfort/st [Standards]; Adult; Female; Humans; Infant; Intensive Care; Male; Neonatal/og [Organization & Administration]; New York; Newborn; Patient Care Team/og [Organization & Administration]; Practice Guidelines as Topic; Prospective Studies; Qualitative Research; Surveys and Questionnaires; Young Adult
Creator
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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>
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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
Byrne M
Daho M
Female
Foe G
Humans
Infant
Intensive Care
Journal Of Perinatology
Male
Neonatal/og [Organization & Administration]
New York
Newborn
November 2019 List
Palliative Care/mt [methods]
Parents/px [psychology]
Parravicini E
Patient Care Team/og [Organization & Administration]
Patient Comfort/st [Standards]
Practice Guidelines As Topic
Prospective Studies
Qualitative Research
Steinwurtzel R
Surveys And Questionnaires
Young Adult
-
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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July 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
July 2019 List
URL Address
<a href="http://doi.org/10.1097/01.NAJ.0000544137.55887.5a" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1097/01.NAJ.0000544137.55887.5a</a>
Dublin Core
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Title
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Pain in Nonverbal Children with Medical Complexity: A Two-Year Retrospective Study
Publisher
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The American journal of nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Child; Female; Male; Adolescent; Humans; Retrospective Studies; Child Behavior; Intellectual Disability; Pain Measurement/mt [Methods]; Pain/di [Diagnosis]; Pain/pp [Physiopathology]; Parents/px [Psychology]; Longitudinal Studies; New England; Nursing Assessment; Surveys and Questionnaires
Creator
An entity primarily responsible for making the resource
Quinn B L; Solodiuk J C; Morrill D; Mauskar S
Identifier
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<a href="http://doi.org/10.1097/01.NAJ.0000544137.55887.5a" target="_blank" rel="noreferrer noopener">10.1097/01.NAJ.0000544137.55887.5a</a>
2018
Adolescent
Child
Child Behavior
Female
Humans
Intellectual Disability
July 2019 List
Longitudinal Studies
Male
Mauskar S
Morrill D
New England
Nursing Assessment
Pain Measurement/mt [Methods]
Pain/di [diagnosis]
Pain/pp [Physiopathology]
Parents/px [psychology]
Quinn B L
Retrospective Studies
Solodiuk J C
Surveys And Questionnaires
The American journal of nursing
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
April 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2019 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2017-312731" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1136/archdischild-2017-312731</a>
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Title
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Individualised advance care planning in children with life-limiting conditions
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Child Health Services/og [Organization & Administration]; Palliative Care/og [Organization & Administration]; Netherlands; Palliative Care/st [Standards]; Quality of Health Care; Male; Practice Guidelines as Topic; Advance Care Planning/og [Organization & Administration]; Parents/px [Psychology]; Child; Humans; Palliative Care/px [Psychology]; Female; Attitude to Health; Pilot Projects; Advance Care Planning/st [Standards]; Child Health Services/st [Standards]; Evidence-Based Medicine/mt [Methods]; Patient Satisfaction/sn [Statistics & Numerical Data]
Creator
An entity primarily responsible for making the resource
Loeffen EAH; Tissing WJE; Schuiling-Otten MA; de Kruiff CC; Kremer L C M; Verhagen AA; Pediatric Palliative Care-Individualized Care Plan Working Group
Description
An account of the resource
INTRODUCTION: In 2013, the Pediatric Association of the Netherlands launched an evidence-based guideline 'Palliative care for children'. To promote implementation in daily practice and hereby improve quality of paediatric palliative care, we aimed to develop a functional individualised paediatric palliative care plan (IPPCP) that covers physical, psychological, spiritual and social functioning, with great emphasis on the guideline's recommendations, advance care planning and patients' and parents' preferences and desires. METHODS: A Dutch working group (28 individuals) with a strong multidisciplinary character developed a draft IPPCP, which was piloted retrospectively and prospectively. In the pilots we completed, the IPPCPs for patients who were recently diagnosed with a life-threatening or life-limiting condition and evaluated completeness, usability and user-friendliness. RESULTS: The final IPPCP comprised five domains: (1) IPPCP data, (2) basics, (3) social, (4) psychosocial and spiritual and (5) physical care. Each domain covered various components. In both pilots, the IPPCP was considered a comprehensive document that covered all areas of paediatric palliative care and was experienced as an improvement to the present situation. However, the current form was regarded to lack user-friendliness. CONCLUSION: We propose a set of essential components of a comprehensive IPPCP for paediatric palliative care with extra attention for advance care planning and anticipatory action. Patients' and parents' preferences and desires are included next to the recommendations of the evidence-based guideline 'Palliative care for children'.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2017-312731" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-312731</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).
2018
Advance Care Planning/og [Organization & Administration]
Advance Care Planning/st [Standards]
April 2019 List
Archives of Disease in Childhood
Attitude To Health
Child
Child Health Services/og [organization & Administration]
Child Health Services/st [Standards]
de Kruiff CC
Evidence-Based Medicine/mt [Methods]
Female
Humans
Kremer L C M
Loeffen EAH
Male
Netherlands
Palliative Care/og [Organization & Administration]
Palliative Care/px [psychology]
Palliative Care/st [standards]
Parents/px [psychology]
Patient Satisfaction/sn [Statistics & Numerical Data]
Pediatric Palliative Care-Individualized Care Plan Working Group
Pilot Projects
Practice Guidelines As Topic
Quality Of Health Care
Schuiling-Otten MA
Tissing WJE
Verhagen AA
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
April 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2015.05.002" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1016/j.jpeds.2015.05.002</a>
Dublin Core
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Title
A name given to the resource
Research Priorities in Pediatric Palliative Care
Publisher
An entity responsible for making the resource available
Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Palliative Care; Parents/px [Psychology]; Humans; United States; Pediatrics; Delphi Technique; Attitude of Health Personnel; Research
Creator
An entity primarily responsible for making the resource
Baker JN; Levine D R; Hinds PS; Weaver MS; Cunningham MJ; Johnson L; Anghelescu D; Mandrell B; Gibson DV; Jones B; Wolfe J; Feudtner C; Friebert S; Carter B; Kane J R
Description
An account of the resource
OBJECTIVE: To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda. STUDY DESIGN: A 4-round modified Delphi online survey was administered to PPC experts and to parents of children who had received PPC. In round 1, research priorities were generated spontaneously. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. In round 4, participants were asked to rank the research priorities that had reached at least 80% consensus. RESULTS: A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for round 2 ratings (n = 130; 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98; 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education. CONCLUSIONS: This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families.
Identifier
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<a href="http://doi.org/10.1016/j.jpeds.2015.05.002" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2015.05.002</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).
2015
Anghelescu D
April 2019 List
Attitude Of Health Personnel
Baker JN
Carter B
Cunningham MJ
Delphi Technique
Feudtner C
Friebert S
Gibson DV
Hinds PS
Humans
Johnson L
Jones B
Journal of Pediatrics
Kane J R
Levine D R
Mandrell B
Palliative Care
Parents/px [psychology]
Pediatrics
Research
United States
Weaver MS
Wolfe J
-
Dublin Core
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Title
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2018 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1016/j.pec.2017.03.028" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1016/j.pec.2017.03.028</a>
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Title
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'Just gripping my heart and squeezing': Naming and explaining the emotional experience of receiving bad news in the paediatric oncology setting
Publisher
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Patient education and counseling
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Physician-Patient Relations; Medical Oncology; Male; Communication; Child; Humans; Adult; Pediatrics; Female; Parents/px [Psychology]; Emotions; Truth Disclosure
Creator
An entity primarily responsible for making the resource
Nelson M; Kelly D; McAndrew R; Smith P
Description
An account of the resource
OBJECTIVE: To explore recipients' perspectives on the range and origins of their emotional experiences during their 'bad news' consultations., METHODS: Participants were four bereaved families of children who had changed from active treatment to palliative care in paediatric oncology. Data was collected using emotional touchpoint storytelling. The names (descriptors) given to the emotional experiences were linguistically classified. Explanations of their perceived origins were examined using applied thematic analysis., RESULTS: 26 descriptors were given, relating to bodily sensations, affective states, evaluations and cognitive conditions. Three themes were identified in the origins of these experiences - 'becoming aware', 'the changes' and 'being in this situation'. Parents described strong emotional displays during the consultation including physical collapse. These related to the internal process of 'becoming aware'. Three descriptors were given as originating from the clinicians and their delivery of the news - 'supported', 'included', 'trusting'., CONCLUSIONS: Recipients perceive their emotional experiences as mainly originating from the news itself, and perceived consequences of it, rather than its delivery. Strong emotional reactions during the interaction are not necessarily an indicator of ineffectual delivery., PRACTICE IMPLICATIONS: Findings offer a thematic framing that may support and deepen practitioners understanding of recipients' emotional reactions during bad news consultations.Crown Copyright � 2017. Published by Elsevier B.V. All rights reserved.
Identifier
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<a href="http://doi.org/%2010.1016/j.pec.2017.03.028" target="_blank" rel="noreferrer noopener">10.1016/j.pec.2017.03.028</a>
2017
Adult
Child
Communication
Emotions
Female
Humans
Kelly D
Male
McAndrew R
Medical Oncology
Nelson M
Oncology 2018 List
Parents/px [psychology]
Patient Education and Counseling
Pediatrics
Physician-patient Relations
Smith P
Truth Disclosure
-
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 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2018 List
URL Address
<a href="http://doi.org/10.1007/s11019-017-9754-5" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s11019-017-9754-5</a>
Dublin Core
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Title
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Withdrawal of artificial nutrition and hydration in neonatal intensive care: parents' and healthcare practitioners' views
Publisher
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Medicine, Health Care & Philosophy
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Health Personnel/es [Ethics]; Health Personnel/px [Psychology]; Intensive Care Units; Parents/px [Psychology]; Withholding Treatment/es [Ethics]; Decision Making/es [Ethics]; France; Humans; Infant; Interviews as Topic; Morals; Neonatal/es [Ethics]; Newborn
Creator
An entity primarily responsible for making the resource
Fournier V; Belghiti E; Brunet L; Spranzi M
Description
An account of the resource
Withdrawing Artificial Nutrition and Hydration (WANH) in the neonatal intensive care units (NICUs) has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the stakeholders' experience is, and whether they consider it ethically appropriate. In order to contribute to the debate, we initiated a study in 2009 to evaluate parental and health care professionals (HCP) perspectives, after they experienced WAHN for a newborn. The study included 25 cases from 5 different clinical neonatology departments. We interviewed both the parents and some of the HCP who cared for the baby, at least 6 months after this latter deceased. We proceeded through in-depth individual qualitative interviews. Content was analyzed for themes and patterns that emerged from the data. Some parents expressed that WANH offered an opportunity to the family to spend a few demedicalized days with the baby before she dies, without any tubes and machines, and to be well supported by the HCP during this palliative stage. But others evaluated the practice in retrospect as a terrible ordeal. All said that, at least, the time of waiting for death to ensue should not last too long. After a few days, it becomes unbearable because of the transformation of the baby's appearance and because they, as parents, began to wonder if she was not dying from starvation rather than from her initial disease. An important proportion of HCP also expressed some kind of ethical unease. This was due to the psychological violence involved in the decision for a human being to stop feeding a little one, and also to the difficulty to deal with the fundamental intention behind the decision of WANH: indeed, could it be claim that it does not presuppose the intention of provoking the infant's death? The discussion focuses on the point to know if WANH can be considered as a source of progress from an ethical point of view, particularly in comparison with earlier practices-that in France could involve active euthanasia by lethal injection. We argue that when HCP are merely focused on avoiding that WAHN could be construed as a way of intending to hasten the baby's death, the practice is at risk to be implemented in a way that becomes ethically counterproductive. Focusing on this intention easily distract the clinical teams from what should be their ultimate concern, namely the baby's comfort during the dying process, as well as the support owned to her parents. To conclude, we suggest that the ethical priorities, when WANH is decided, should be the support due to the patient and her family on the one hand, and, on the other hand to implement it in such a way that at least the baby seems to have died of her initial disease and never of starvation. This means that HCP have a duty to control the timing of death, even though this might be incompatible with the worry to avoid the intention of hastening the baby's death.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s11019-017-9754-5" target="_blank" rel="noreferrer noopener">10.1007/s11019-017-9754-5</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.
2017
Belghiti E
Brunet L
Decision Making/es [Ethics]
Fournier V
France
Health Personnel/es [Ethics]
Health Personnel/px [psychology]
Humans
Infant
Intensive Care Units
Interviews As Topic
Medicine, Health Care & Philosophy
Morals
Neonatal/es [Ethics]
Newborn
October 2018 List
Parents/px [psychology]
September 2018 List
Spranzi M
Withholding Treatment/es [ethics]
-
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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August 2018 List
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).
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
August 2018 List
URL Address
<a href="http://doi.org/10.1111/jan.13304" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jan.13304</a>
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Title
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Maintaining family life balance while facing a child's imminent death-A mixed methods study
Publisher
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Journal of Advanced Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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Humans; Parents/psychology; Parents/px [Psychology]; Family; Child; Female; Male; Surveys and Questionnaires; Terminal Care
Creator
An entity primarily responsible for making the resource
Eskola K; Bergstraesser E; Zimmermann K; Cignacco E
Description
An account of the resource
AIM: To understand parents' experiences and needs during a child's end-of-life care at home and to identify systemic factors that influence its provision. BACKGROUND: A child's end-of-life phase is an extremely difficult time for the whole family. Parents have specific needs, especially when they care for a dying child at home. DESIGN: Concurrent embedded mixed methods design. METHODS: This sub-study of the nationwide survey, 'Paediatric End-of-Life Care Needs in Switzerland' (2012-2015) included 47 children who received EOL care at home from 2011-2012. We extracted quantitative data from patients' medical charts and obtained information via parental questionnaire and then compared parents whose child died at home or in hospital by computing generalized estimation equations. We thematically analysed interviews with parents who provided EOL care at home. RESULTS: Parents created an intimate lifeworld and a sense of normality for the child at home. They constantly balanced the family's lifeworld with the requirements and challenges posed by the outside world. This work exhausted parents. Parental 'readiness' and social support drove EOL care for children at home. Parents needed practical help with housekeeping and had negative experiences when dealing with insurance. In only 34.8% of cases was a child's EOL home care supported by paediatric palliative care team. CONCLUSION: Paediatric end-of-life care at home is only feasible if parents make extraordinary efforts. If family-centred end-of-life home care is provided by a hospital-based paediatric palliative home care team, which includes paid housekeeping help and psychological support, parents' needs could be better met.
Identifier
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<a href="http://doi.org/10.1111/jan.13304" target="_blank" rel="noreferrer noopener">10.1111/jan.13304</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).
2017
August 2018 List
Bergstraesser E
Child
Cignacco E
Eskola K
Family
Female
Humans
Journal Of Advanced Nursing
Male
Parents/psychology
Parents/px [psychology]
Surveys And Questionnaires
Terminal Care
Zimmermann K
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1111/cch.12020" target="_blank" rel="noreferrer">http://doi.org/10.1111/cch.12020</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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Was there a plan? End-of-life care for children with life-limiting conditions: a review of multi-service healthcare records
Publisher
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Child: Care, Health And Development
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; Humans; Male; Advance Directives; Physician-Patient Relations; Pediatrics; Practice Guidelines as Topic; Communication; Resuscitation Orders; Time Factors; quality of life; end of life; adolescent; Preschool; decision making; infant; retrospective studies; DNAR; Parents; documentation; Parents/px [Psychology]; Terminal Care; Patient Care Planning/og [Organization & Administration]; Terminal Care/og [Organization & Administration]; review; Medical Records; Neoplasms; advance planning; child and family wishes; Neoplasms/mo [Mortality]; Patient Care Planning/st [Standards]; Terminal Care/px [Psychology]
Creator
An entity primarily responsible for making the resource
Beringer AJ; Heckford EJ
Description
An account of the resource
BACKGROUND: Planning for care at the end of life (EoL) is an essential component of support and care for families of children with life-limiting conditions. The purpose of this review was to compare documented EoL planning with published children's palliative care standards, across a range of children's healthcare services and to assess the impact on practice of written guidelines to support EoL care planning. METHOD: A manual retrospective review of healthcare records using a purpose-built form. Inclusion criteria were the records of children with a diagnosed life-limiting or life-threatening condition, who had died before the age of 18 years, between October 2008 and March 2010, within a defined geographical area served by one or more of the participating services. The sample was 114 sets of notes relating to a cohort of 48 children: 24 girls and 24 boys, the majority of whose deaths were cancer related. RESULTS: Examples of good practice were found in the records of individual services. Services had each developed their own systems and documents to support EoL care planning rather than using a unified documentation system. Where documented practice fell short, this was related to a lack of evidence that choice in location of death had been offered, delays in sharing of information between services, and information being buried in the narrative of the notes, making it difficult to find. CONCLUSIONS: Current documented EoL planning varies between services. Those who are infrequently involved in the provision of EoL care may benefit from support by those for whom this is part of their daily working life. These professionals can help prepare staff to engage families in these difficult but important conversations - and encourage them to document them in a way that can be easily and readily accessed and shared.
2014-03
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/cch.12020" target="_blank" rel="noreferrer">10.1111/cch.12020</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).
Type
The nature or genre of the resource
Journal Article
2014
Adolescent
Advance Directives
advance planning
Backlog
Beringer AJ
Child
child and family wishes
Child: Care, Health and Development
Communication
Decision Making
DNAR
Documentation
End Of Life
Female
Heckford EJ
Humans
Infant
Journal Article
Male
Medical Records
Neoplasms
Neoplasms/mo [mortality]
Parents
Parents/px [psychology]
Patient Care Planning/og [Organization & Administration]
Patient Care Planning/st [Standards]
Pediatrics
Physician-patient Relations
Practice Guidelines As Topic
Preschool
Quality Of Life
Resuscitation Orders
Retrospective Studies
Review
Terminal Care
Terminal Care/og [organization & Administration]
Terminal Care/px [psychology]
Time Factors
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2013-3124" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2013-3124</a>
Dublin Core
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Title
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Pediatric advance directives: parents' knowledge, experience, and preferences
Publisher
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Pediatrics
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; Cross-Sectional Studies; Female; Humans; Male; Palliative Care; Adult; Attitude to Health; Logistic Models; Prospective Studies; Health Services Needs and Demand; Socioeconomic Factors; end of life; adolescent; Preschool; infant; advance care planning; DNAR; Parents; Parents/px [Psychology]; Advance Directives; Hispanic Americans/sn [Statistics & Numerical Data]; Advance Directives/px [Psychology]; decision making; Attitude; Chronic disease; special-needs children
Creator
An entity primarily responsible for making the resource
Liberman DB; Pham PK; Nager AL
Description
An account of the resource
OBJECTIVES: To explore parents' and caregivers' experience, knowledge, and preferences regarding advance directives (ADs) for children who have chronic illness. METHODS: We conducted a prospective, cross-sectional survey of parents and caregivers of children who have chronic illness. During ambulatory medical visits, participants were asked about previous AD experience and knowledge, future preferences regarding AD discussions, their child's past and current health status, and family demographics. RESULTS: Among 307 participants surveyed, previous AD experience was low, with 117 (38.1%) having heard of an AD, 54 (17.6%) having discussed one, and 77 (25.1%) having known someone who had an AD. Furthermore, 27 (8.8%) participants had an AD or living will of their own, and 8 (2.6%) reported that their chronically ill child had an AD. Previous AD knowledge was significantly more likely among parents and caregivers who had a college degree than those who did not have a high school diploma, yet significantly less likely among primarily Spanish-speaking parents and caregivers than those primarily English-speaking. Interest in creating an AD for the child was reported by 151 (49.2%) participants, and was significantly more likely among families who had more frequent emergency department visits over the previous year. CONCLUSIONS: The limited AD experience and knowledge of parents and caregivers of children who have chronic illness and their interest in creating an AD suggest an unmet need among families of children who have chronic illness, and an opportunity to enhance communication between families and medical teams regarding ADs and end-of-life care.
2014-08
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2013-3124" target="_blank" rel="noreferrer">10.1542/peds.2013-3124</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).
Type
The nature or genre of the resource
Journal Article
2014
Adolescent
Adult
Advance Care Planning
Advance Directives
Advance Directives/px [Psychology]
Attitude
Attitude To Health
Backlog
Child
Chronic Disease
Cross-sectional Studies
Decision Making
DNAR
End Of Life
Female
Health Services Needs And Demand
Hispanic Americans/sn [Statistics & Numerical Data]
Humans
Infant
Journal Article
Liberman DB
Logistic Models
Male
Nager AL
Palliative Care
Parents
Parents/px [psychology]
Pediatrics
Pham PK
Preschool
Prospective Studies
Socioeconomic Factors
Special-needs Children
-
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/10.11124/jbisrir-2015-2413" target="_blank" rel="noreferrer">http://doi.org/10.11124/jbisrir-2015-2413</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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Healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions: a qualitative systematic review protocol
Publisher
An entity responsible for making the resource available
Jbi Database Of Systematic Reviews And Implementation Reports
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Communication; Critical Illness/px [Psychology]; Palliative Care/px [Psychology]; Parents/px [Psychology]; Professional-Family Relations; adolescent; Adult; Child; Female; Health Personnel/px [Psychology]; Humans; infant; Male; Newborn; Preschool; Qualitative Research; Young Adult
Creator
An entity primarily responsible for making the resource
Ekberg S; Bradford N; Herbert A; Danby S; Yates P
Description
An account of the resource
REVIEW QUESTION/OBJECTIVE: The objective of this review is to identify and synthesize the best international qualitative evidence on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting conditions. For the purposes of this review, "healthcare users" will be taken to include children who have life-limiting conditions and their families. The question to be addressed is:What are healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions? BACKGROUND: The prospect of the death of a child from an incurable medical condition is harrowing, yet finding a way to discuss this prospect is crucial to maximize the quality of life for such children and their families. High-quality communication is well recognized as a core skill health care professionals need to maximize the quality of care they provide. This skill is valued by service users, who consistently rate it as one of the highest priorities for the care they receive. Evidence suggests, however, that healthcare professionals can feel ill-equipped or uncomfortable communicating with and about such children. Therefore, it is important to understand what represents high-quality communication and what is involved in accomplishing this within pediatric palliative care.In recent decades there has been an increased focus on providing palliative care for children who have life-limiting conditions. These are conditions for which no cure is available and for which the probable outcome is premature death. Palliative care may also be appropriate for children who have life-threatening conditions; these are conditions where there is not only a high probability of premature death but also a chance of long-term survival into adulthood Although pediatric palliative care is underpinned by the same philosophy as adult palliative care, children who have life-limiting conditions and their families have particular needs that distinguish them from users of adult palliative care. For example, at a physical level children are more likely than adults to have non-malignant conditions that follow trajectories in which children oscillate between feeling relatively well and acutely unwell. The social dynamic of their care is also radically different, particularly given the role of parents or guardians in making surrogate decisions about their child's care. Such factors warrant considering pediatric palliative care as distinct from palliative care more generally.Although the particular circumstances of children who have life-limiting conditions have led to development of pediatric palliative care, the particular provisions of this care differs among countries. One aspect of variation is the age range of patients. Pediatric palliative care is usually provided to neonates, infants, children, adolescents and young adults, but international variations in the definitions of these age ranges, particularly for adolescents and young adults, means pediatric palliative care is provided to different age groups in different countries. This review therefore adopts a pragmatic rather than an age-based definition of a pediatric palliative care, considering all studies relating to service users who are being cared for by pediatric rather than adult healthcare services.In catering for the unique needs of children who have life-limiting conditions and their families, pediatric palliative care aims to achieve pain and symptom management, enhanced dignity and quality of life, and psychosocial and spiritual care. It also seeks to incorporate care for patients' broader families and facilitating access to appropriate services and support. High-quality communication is crucial for achieving these aims. It enables healthcare users and providers to make decisions that underpin the care that is provided and the quality of the life that is possible for patients and their families.Although both users and providers recognize the value of high-quality communication with and about children who have life-limiting conditions, this does not mean that these stakeholders necessarily share the same perspective of what constitutes high-quality communication and the best way of accomplishing this. Focusing on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting conditions, the present review will explore the subjective impact of professionals' communication on the people for whom they provide care. It may be necessary to consider a range of contextual factors to understand healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions. For instance, age, developmental stage, cognitive capacity, emotional and social strengths, and family dynamics can influence a child's level of involvement in discussions about their condition and care.13,28,29,35 Although there are factors that appear more consistent across the range of pediatric palliative care users, such as parents' preferences for being treated by healthcare professionals as partners in making decisions about the care of their child, there is not always such consistency.29 Nor is it clear whether such findings can be generalized across different cultural contexts.13,36 In appraising existing research, this systematic review will therefore consider the relationship between the context of individual studies and their reported findings. Background The primary aim of this review is to identify, appraise and synthesize existing qualitative evidence of healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions. The review will consider relevant details of these findings, particularly whether factors like age are relevant for understanding particular experiences of communication. An outcome of this review will be the identification of best available qualitative evidence that can be used to inform professional practice, as well as an identification of priorities for future research in pediatric palliative care. Background A preliminary search in MEDLINE and CINAHL found primary studies exploring healthcare users' experiences of aspects of communicating with healthcare professionals about children who have life-limiting conditions. A search was also conducted for existing systematic reviews in PubMed, CINAHL, EMBASE, PsycINFO, the Cochrane Database of Systematic Reviews, the JBI Database of Systematic Reviews and Implementation Reports, and PROSPERO. No systematic reviews on this topic were found.
2015-11
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.11124/jbisrir-2015-2413" target="_blank" rel="noreferrer">10.11124/jbisrir-2015-2413</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2015
Adolescent
Adult
Bradford N
Child
Communication
Critical Illness/px [psychology]
Danby S
Ekberg S
Female
Health Personnel/px [psychology]
Herbert A
Humans
Infant
Jbi Database Of Systematic Reviews And Implementation Reports
Male
March 2018 List
Newborn
Palliative Care/px [psychology]
Parents/px [psychology]
Preschool
Professional-family Relations
Qualitative Research
Yates P
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2018 List
URL Address
<a href="http://doi.org/10.1038/jp.2015.188" target="_blank" rel="noreferrer">http://doi.org/10.1038/jp.2015.188</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Palliative care in neonatal neurology: robust support for infants, families and clinicians
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
2015
Subject
The topic of the resource
Infant; Nervous System Diseases; Palliative Care; Parents/px [Psychology]; Clinical Decision-Making/es [Ethics]; Diseases; Diseases/px [Psychology]; Diseases/th [Therapy]; Humans; infant; Intensive Care Units; Neonatal/og [Organization & Administration]; Nervous System Diseases/px [Psychology]; Nervous System Diseases/th [Therapy]; Neurology/mt [Methods]; Newborn; Palliative Care/es [Ethics]; Palliative Care/mt [Methods]; Palliative Care/px [Psychology]; social support
Creator
An entity primarily responsible for making the resource
Lemmon ME; Bidegain M; Boss RD
Description
An account of the resource
Infants with neurological injury and their families face unique challenges in the neonatal intensive care unit. As specialty palliative care support becomes increasingly available, we must consider how to intentionally incorporate palliative care principles into the care of infants with neurological injury. Here, we review data regarding neonatal symptom management, prognostic uncertainty, decision making, communication and parental support for neonatal neurology patients and their families.
2015
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1038/jp.2015.188" target="_blank" rel="noreferrer">10.1038/jp.2015.188</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2015
Bidegain M
Boss RD
Clinical Decision-Making/es [Ethics]
Diseases
Diseases/px [Psychology]
Diseases/th [Therapy]
Humans
Infant
Intensive Care Units
Journal Of Perinatology
Lemmon ME
March 2018 List
Neonatal/og [Organization & Administration]
Nervous System Diseases
Nervous System Diseases/px [Psychology]
Nervous System Diseases/th [Therapy]
Neurology/mt [Methods]
Newborn
Palliative Care
Palliative Care/es [Ethics]
Palliative Care/mt [methods]
Palliative Care/px [psychology]
Parents/px [psychology]
Social Support
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000269399.47060.6d" target="_blank" rel="noreferrer">http://doi.org/10.1097/01.pcc.0000269399.47060.6d</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
Parental involvement in treatment decisions regarding their critically ill child: a comparative study of France and Quebec
Publisher
An entity responsible for making the resource available
Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Child; Female; Humans; Male; Intensive Care Units; Professional-Family Relations; Communication; Paternalism; Qualitative Research; Consumer Satisfaction; Cultural Characteristics; Quebec; Preschool; infant; IM; ICU Decision Making; France; Parents/px [Psychology]; Consumer Participation/px [Psychology]; Critical Illness/th [Therapy]; Nurse's Role/px [Psychology]; Pediatric/og [Organization & Administration]; Physician's Role/px [Psychology]
Creator
An entity primarily responsible for making the resource
Carnevale FA; Canoui P; Cremer R; Farrell C; Doussau A; Seguin MJ; Hubert P; Leclerc F; Lacroix J
Description
An account of the resource
OBJECTIVE: To examine whether physicians or parents assume responsibility for treatment decisions for critically ill children and how this relates to subsequent parental experience. A significant controversy has emerged regarding the role of parents, relative to physicians, in relation to treatment decisions for critically ill children. Anglo-American settings have adopted decision-making models where parents are regarded as responsible for such life-support decisions, while in France physicians are commonly considered the decision makers. DESIGN: Grounded theory qualitative methodology. SETTING: Four pediatric intensive care units (two in France and two in Quebec, Canada). PATIENTS: Thirty-one parents of critically ill children; nine physicians and 13 nurses who cared for their children. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Semistructured interviews were conducted. In France, physicians were predominantly the decision makers for treatment decisions. In Quebec, decisional authority practices were more varied; parents were the most common decision maker, but sometimes it was physicians, while for some decisional responsibility depended on the type of decision to be made. French parents appeared more satisfied with their communication and relationship experiences than Quebec parents. French parents referred primarily to the importance of the quality of communication rather than decisional authority. There was no relationship between parents' actual responsibility for decisions and their subsequent guilt experience. CONCLUSIONS: It was remarkable that a certain degree of medical paternalism was unavoidable, regardless of the legal and ethical norms that were in place. This may not necessarily harm parents' moral experiences. Further research is required to examine parental decisional experience in other pediatric settings.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.pcc.0000269399.47060.6d" target="_blank" rel="noreferrer">10.1097/01.pcc.0000269399.47060.6d</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2007
Backlog
Canoui P
Carnevale FA
Child
Communication
Consumer Participation/px [Psychology]
Consumer Satisfaction
Cremer R
Critical Illness/th [therapy]
Cultural Characteristics
Doussau A
Farrell C
Female
France
Hubert P
Humans
ICU Decision Making
IM
Infant
Intensive Care Units
Journal Article
Lacroix J
Leclerc F
Male
Nurse's Role/px [Psychology]
Parents/px [psychology]
Paternalism
Pediatric Critical Care Medicine
Pediatric/og [Organization & Administration]
Physician's Role/px [Psychology]
Preschool
Professional-family Relations
Qualitative Research
Quebec
Seguin MJ
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/j.jamda.2005.06.004" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jamda.2005.06.004</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
Parent resuscitation preferences for young people with severe developmental disabilities.
Publisher
An entity responsible for making the resource available
Journal Of The American Medical Directors Association
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Female; Humans; Male; Adult; Attitude to Health; Choice Behavior; Massachusetts; Program Evaluation; Analysis of Variance; Organizational Policy; adolescent; Preschool; retrospective studies; Parents/education/psychology; DNAR; Attitude to Health; Developmental Disabilities/th [Therapy]; Health Education/og [Organization & Administration]; Parents; Resuscitation Orders/px [Psychology]; Advance Care Planning/og [Organization & Administration]; Advance Care Planning/organization & administration; Consent Forms; Developmental Disabilities/co [Complications]; Developmental Disabilities/complications/therapy; documentation; Health Education/organization & administration; Parents/ed [Education]; Parents/px [Psychology]; Resuscitation Orders/psychology; Skilled Nursing Facilities/og [Organization & Administration]; Skilled Nursing Facilities/organization & administration; Treatment Refusal/psychology; Treatment Refusal/px [Psychology]
Creator
An entity primarily responsible for making the resource
Friedman SL
Description
An account of the resource
OBJECTIVE: To determine the relationship of providing explanatory information regarding resuscitation to DNR status for parents and guardians of young people who reside in a pediatric skilled nursing facility., DESIGN: Retrospective, quasi-experimental study of policy change, with each individual serving as his or her own control. Interval comparisons were made between resuscitation choices before and after information was provided to families. For those who were originally in the full resuscitation group, comparisons were also made between those who changed to DNR and those who did not., SETTING: Pediatric skilled nursing facility in Massachusetts., PARTICIPANTS: Sixty individuals with severe mental retardation and complex medical problems, between the ages of approximately 2 and 32 years., MEASUREMENTS: Review of records regarding resuscitation choices and changes, with each person serving as his or her own control. Both univariate and multivariate analyses were performed on individuals who were in the full resuscitation group at the initiation of the study to determine distinguishing characteristics between those who remained in that group from those who changed to DNR., RESULTS: The families of 11 (18%) of 60 patients had requested DNR orders prior to requirement of written preference for resuscitation or DNR in the event of cardiopulmonary arrest. After provision of informative material, there was an increase to 26 patients (43%) who were designated DNR (P < . 001). There was no significant difference in characteristics between the groups that changed to DNR and those that remained full resuscitation, although there was a marginal trend of children in the group with an acquired etiology for their developmental disabilities were more apt to have their resuscitation status changed than those with congenital diagnoses (P = .053)., CONCLUSION: When families are provided with explanatory information regarding resuscitation in a nonacute, pediatric skilled nursing home setting, there is a significant increase in request for DNR.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jamda.2005.06.004" target="_blank" rel="noreferrer">10.1016/j.jamda.2005.06.004</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2006
Adolescent
Adult
Advance Care Planning/og [Organization & Administration]
Advance Care Planning/organization & Administration
Analysis of Variance
Attitude To Health
Backlog
Child
Choice Behavior
Consent Forms
Developmental Disabilities/co [Complications]
Developmental Disabilities/complications/therapy
Developmental Disabilities/th [Therapy]
DNAR
Documentation
Female
Friedman SL
Health Education/og [Organization & Administration]
Health Education/organization & administration
Humans
Journal Article
Journal Of The American Medical Directors Association
Male
Massachusetts
Organizational Policy
Parents
Parents/ed [education]
Parents/education/psychology
Parents/px [psychology]
Preschool
Program Evaluation
Resuscitation Orders/psychology
Resuscitation Orders/px [Psychology]
Retrospective Studies
Skilled Nursing Facilities/og [Organization & Administration]
Skilled Nursing Facilities/organization & administration
Treatment Refusal/psychology
Treatment Refusal/px [Psychology]
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1089/jpm.2005.8.766" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2005.8.766</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
Pediatric advance care planning.
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Interviews as Topic; Wisconsin; Preschool; PedPal Lit; infant; Newborn; DNAR; Parents/psychology; DNAR Outcomes; Pediatrics; Advance Care Planning/og [Organization & Administration]; Parents/px [Psychology]; 7 died at home and 2 died at a hospital. Eight of the children's advance directives were followed during the dying process; 9 are deceased; Advance Care Planning/organization & administration; including preserving their child's quality of life and avoiding unnecessary suffering.; individuals in the community raised concerns about the child's advance directive. CONCLUSIONS: Even though the topic of their child's death is difficult; the majority of the interviewed parents found the advance care planning process for the child helpful because it assured the best care for the child; while 1 was not. Th irteen parents were interviewed. Twelve stated that the process of advance care planning benefited their children and their family. Rarely
Creator
An entity primarily responsible for making the resource
Hammes BJ; Klevan J; Kempf M; Williams MS
Description
An account of the resource
OBJECTIVE: This study describes the process and population involved in pediatric advance care planning at one Midwest medical center. The outcomes and the parents' perceptions of this planning are also discussed., METHODS: Pediatric patients with advance directives were identified from ethics consultations records. Information about the type of advance directive, the patient's medical condition and care received was obtained from the medical records. Parents of the children were then contacted and interviewed in regard to the advance care planning process done for their child. The interviews were audiotaped and transcribed. Transcribed interviews were reviewed and themes were identified., RESULTS: Seventeen children from 16 families were included in the study. Almost all of the patients had progressive disorders other than cancer. Of the 17 children, 9 are deceased, 7 died at home and 2 died at a hospital. Eight of the children's advance directives were followed during the dying process, while 1 was not. Thirteen parents were interviewed. Twelve stated that the process of advance care planning benefited their children and their family. Rarely, individuals in the community raised concerns about the child's advance directive., CONCLUSIONS: Even though the topic of their child's death is difficult, the majority of the interviewed parents found the advance care planning process for the child helpful because it assured the best care for the child, including preserving their child's quality of life and avoiding unnecessary suffering.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2005.8.766" target="_blank" rel="noreferrer">10.1089/jpm.2005.8.766</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2005
7 died at home and 2 died at a hospital. Eight of the children's advance directives were followed during the dying process
9 are deceased
Advance Care Planning/og [Organization & Administration]
Advance Care Planning/organization & Administration
Backlog
Child
DNAR
DNAR Outcomes
Female
Hammes BJ
Humans
including preserving their child's quality of life and avoiding unnecessary suffering.
individuals in the community raised concerns about the child's advance directive. CONCLUSIONS: Even though the topic of their child's death is difficult
Infant
Interviews As Topic
Journal Article
Journal of Palliative Medicine
Kempf M
Klevan J
Male
Newborn
Parents/psychology
Parents/px [psychology]
Pediatrics
PedPal Lit
Preschool
the majority of the interviewed parents found the advance care planning process for the child helpful because it assured the best care for the child
while 1 was not. Th irteen parents were interviewed. Twelve stated that the process of advance care planning benefited their children and their family. Rarely
Williams MS
Wisconsin
-
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/10.1046/j.1440-1754.1999.00351.x" target="_blank" rel="noreferrer">http://doi.org/10.1046/j.1440-1754.1999.00351.x</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The role of palliative care in advanced muscular dystrophy and spinal muscular atrophy.
Publisher
An entity responsible for making the resource available
Journal Of Paediatrics And Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
1999
Subject
The topic of the resource
Child; Female; Humans; Male; Advance Directives; Adult; Respiration; Continuity of Patient Care; adolescent; bereavement; social support; DNAR; Nuclear Family; Artificial; Parents/px [Psychology]; Palliative Care/og [Organization & Administration]; Muscular Atrophy; Muscular Dystrophies/th [Therapy]; Needs Assessment; Terminal Care/st [Standards]; South Australia; Spinal/th [Therapy]
Creator
An entity primarily responsible for making the resource
Parker D; Maddocks I; Stern LM
Description
An account of the resource
OBJECTIVE: This study examines the potential role for palliative care services in the care of individuals with muscular dystrophy and spinal muscular atrophy, and the support of their families., METHODOLOGY: Semistructured interviews were conducted in South Australia with nine bereaved and four current family members of individuals with muscular dystrophy or spinal muscular atrophy. Issues explored during interview included: (i) the family perceptions of the difficulties in caring; (ii) the psychological and physical resources which were available to assist them; and (iii) family recall of the management of the terminal phase of the illness., RESULTS: Significant issues identified included: (i) a lack of coordination of care and access to skilled, competent carers; (ii) a lack of support for siblings; (iii) inadequate bereavement care; and (iv) limited discussion of options of ventilatory support and advance directives., CONCLUSIONS: The terminal care for individuals with muscular dystrophy and spinal muscular atrophy and their families requires improvement. Although many individuals with these conditions will die following an acute event, palliative care services may be appropriate for those who require a period of terminal care at home.
1999
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1046/j.1440-1754.1999.00351.x" target="_blank" rel="noreferrer">10.1046/j.1440-1754.1999.00351.x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
1999
Adolescent
Adult
Advance Directives
Artificial
Backlog
Bereavement
Child
Continuity Of Patient Care
DNAR
Female
Humans
Journal Article
Journal of Paediatrics and Child Health
Maddocks I
Male
Muscular Atrophy
Muscular Dystrophies/th [Therapy]
Needs Assessment
Nuclear Family
Palliative Care/og [Organization & Administration]
Parents/px [psychology]
Parker D
Respiration
Social Support
South Australia
Spinal/th [Therapy]
Stern LM
Terminal Care/st [standards]
-
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
January 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
January 2018 List
URL Address
<a href="http://doi.org/10.1007/s00431-011-1398-5" target="_blank" rel="noreferrer">http://doi.org/10.1007/s00431-011-1398-5</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Palliative care for children and adolescents in Switzerland: a needs analysis across three diagnostic groups
Publisher
An entity responsible for making the resource available
European Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Health Services Needs and Demand; Palliative Care; adolescent; Child; Child Preschool; Communication; hospice care; Humans; Interviews as Topic; Needs Assessment; Parents/px [Psychology]; Professional-Patient Relations; Qualitative Research; Switzerland
Creator
An entity primarily responsible for making the resource
Inglin S; Hornung R; Bergstraesser E
Description
An account of the resource
The objective of this qualitative study was to explore the perceptions and needs of families who care for a child with a life-limiting disease. Considering the heterogeneity of life-limiting diseases in childhood, three diagnostic groups were defined: (a) cancer, (b) neurological disorders, and (c) non-cancer/non-neurological conditions. Fifteen parents whose child had been treated in one of four children's hospitals and received palliative care or had died within the previous 2 years were interviewed. The main interview topics were: communication with professionals, need for support in care (at home or hospital), and bereavement support. Irrespective of the center of care, parents of children with diagnoses other than cancer reported a lack of support concerning practical issues of care and psychosocial aspects. Parents of children with cancer expressed difficulties related to coordination of care especially when care was provided at home. Bereaved parents emphasized their wish for bereavement support. Our findings demonstrate shortcomings in pediatric palliative care in Switzerland and outline basic needs of affected families including psychosocial support, coordination of care and bereavement support. Based on these findings we formulate some suggestions on how to initiate pediatric palliative care in a most efficient way and tailored to the needs of families in Switzerland.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00431-011-1398-5" target="_blank" rel="noreferrer">10.1007/s00431-011-1398-5</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).
2011
Adolescent
Bergstraesser E
Child
Child Preschool
Communication
European Journal of Pediatrics
Health Services Needs And Demand
Hornung R
Hospice Care
Humans
Inglin S
Interviews As Topic
January 2018 List
Needs Assessment
Palliative Care
Parents/px [psychology]
Professional-patient Relations
Qualitative Research
Switzerland
-
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
January 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
January 2018 List
URL Address
<a href="https://www.ncbi.nlm.nih.gov/pubmed/11547505" target="_blank" rel="noreferrer">https://www.ncbi.nlm.nih.gov/pubmed/11547505</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
Ethical decision making in neonatal units--the normative significance of vitality
Publisher
An entity responsible for making the resource available
Medicine, Health Care & Philosophy
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Decision Making; Ethics Medical; Euthanasia/px [Psychology]; Infant Premature; Intensive Care Neonatal/st [Standards]; Female; Humans; Infant Mortality; Infant Newborn; Infant Premature Diseases; Male; Medical Futility; Norway; Parents/px [Psychology]; Physician's Role; Qualitative Research
Creator
An entity primarily responsible for making the resource
Brinchmann BS; Nortvedt P
Description
An account of the resource
This article will be concerned with the phenomenon of vitality, which emerged as one of the main findings in a larger grounded theory study about life and death decisions in hospitals' neonatal units. Definite signs showing the new-born infant's energy and vigour contributed to the clinician's judgements about life expectancy and the continuation or termination of medical treatment. In this paper we will discuss the normative importance of vitality as a diagnostic cue and will argue that vitality, as a sign perceived by doctors and nurses, has moral significance and represents a legitimate contribution to clinical decision-making in difficult cases where the child's life is at stake. We will argue that these clinical intuitions can be justified on a moral basis but only with certain qualifications that accounts for a certain objectivity and intersubjective reliability in the therapeutic judgements.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://www.ncbi.nlm.nih.gov/pubmed/11547505" target="_blank" rel="noreferrer">11547505</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).
2001
Brinchmann BS
Decision Making
Ethics Medical
Euthanasia/px [Psychology]
Female
Humans
Infant Mortality
Infant Newborn
Infant Premature
Infant Premature Diseases
Intensive Care Neonatal/st [standards]
January 2018 List
Male
Medical Futility
Medicine, Health Care & Philosophy
Nortvedt P
Norway
Parents/px [psychology]
Physician's Role
Qualitative Research
-
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
January 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
January 2018 List
URL Address
<a href="http://doi.org/10.1007/s00431-006-0190-4" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00431-006-0190-4</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
Consultation of Parents in Actual End-Of-Life Decision-Making in Neonates and Infants
Publisher
An entity responsible for making the resource available
European Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Critical Illness/th [Therapy]; Decision Making; Parents/px [Psychology]; Terminal Care; Belgium; gestational age; Humans; infant; Infant Newborn; Life Support Care/px [Psychology]; Medical Futility/px [Psychology]; Physician-Patient Relations; retrospective studies; Surveys and Questionnaires; Terminal Care/px [Psychology]; Withholding Treatment
Creator
An entity primarily responsible for making the resource
Provoost V; Cools F; Deconinck P; Ramet J; Deschepper R; Bilsen J; Mortier F; Vandenplas Y; Deliens L
Description
An account of the resource
The objective of this study was to assess how frequently end-of-life decisions (ELDs) with a possible or certain life-shortening effect in neonates and infants were discussed with parents, and to determine if consultation of parents was associated with the type of ELD, (clinical) characteristics of the patient, and socio-demographic characteristics of the physician. A retrospective study of all deaths of live born infants under the age of one year was conducted in Flanders, Belgium. For 292 of all 298 deaths in a 1-year period (between 1 August 1999 and 31 July 2000) the attending physician could be identified and was sent an anonymous questionnaire. All cases with an ELD and containing information regarding the consultation of parents were included. The response rate was 87% (253/292). In 136 out of 143 cases, an ELD was made and information on the consultation of parents was obtained. According to the physician, the ELD was discussed with parents in 84% (114/136) of cases. The smaller the gestational age of the infant, the more the parental request for an ELD was explicit (p=0.025). When parents were not consulted, the ELD was based more frequently on the fact that the infant had no chance to survive and less on quality-of-life considerations (p=0.001); the estimated shortening of life due to the ELD was small in all cases, but significantly smaller (p<0.001) if parents were not consulted. It is concluded that the majority of parents of children dying under the age of one year are consulted in ELD-making, especially for decisions based on quality-of-life considerations (95.1%). Parents of infants with a small gestational age more often explicitly requested an ELD.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00431-006-0190-4" target="_blank" rel="noreferrer noopener">10.1007/s00431-006-0190-4</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).
2006
Belgium
Bilsen J
Cools F
Critical Illness/th [therapy]
Decision Making
Deconinck P
Deliens L
Deschepper R
European Journal of Pediatrics
Gestational Age
Humans
Infant
Infant Newborn
January 2018 List
Life Support Care/px [Psychology]
Medical Futility/px [Psychology]
Mortier F
Parents/px [psychology]
Physician-patient Relations
Provoost V
Ramet J
Retrospective Studies
Surveys And Questionnaires
Terminal Care
Terminal Care/px [psychology]
Vandenplas Y
Withholding Treatment
-
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
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[Difficulties in communication with parents of pediatric cancer patients during the transition to palliative care]
Publisher
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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
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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
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<a href="http://doi.org/10.1556/650.2017.30815" target="_blank" rel="noreferrer">10.1556/650.2017.30815</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).
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
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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 2017 List
URL Address
http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=medl&AN=27261370
Notes
<p>Currie, Erin R<br />Christian, Becky J<br />Hinds, Pamela S<br />Perna, Samuel J<br />Robinson, Cheryl<br />Day, Sara<br />Meneses, Karen<br />S0882-5963(16)30004-5</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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Parent Perspectives of Neonatal Intensive Care at the End-of-Life
Publisher
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Journal of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Intensive Care Neonatal/st [standards]; Palliative Care/mt [methods]; Parents/px [psychology]; Professional-family Relations; Terminal Care/px [psychology]; Adaptation Psychological; Adult; Bereavement; Decision Making; Female; Humans; Infant Newborn; Intensive Care Neonatal/td [trends]; Intensive Care Units Neonatal; Interviews As Topic; Male; Palliative Care/px [psychology]; Perception; Qualitative Research; Stress Psychological; Terminal Care/mt [methods]; United States
Creator
An entity primarily responsible for making the resource
Currie ER; Christian BJ; Hinds PS; Perna SJ; Robinson C; Day S; Meneses K
Description
An account of the resource
This descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. "Life and death in the NICU environment" emerged as the primary theme with the following categories: ups and downs of parenting in the NICU, decision-making challenges in the NICU, and parent support. Parents encountered challenges with areas for improvement for end-of-life and palliative care in the NICU. Further research is necessary to understand barriers with integrating palliative care and curative care in the NICU, and how NICU care affects bereavement and coping outcomes after infant death.
Identifier
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10.1016/j.pedn.2016.03.023
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).
2016
Adaptation Psychological
Adult
Bereavement
Christian BJ
Currie ER
Day S
Decision Making
Female
Hinds PS
Humans
Infant Newborn
Intensive Care Neonatal/st [standards]
Intensive Care Neonatal/td [trends]
Intensive Care Units Neonatal
Interviews As Topic
Journal of Pediatric Nursing
Male
Meneses K
November 2017 List
Palliative Care/mt [methods]
Palliative Care/px [psychology]
Parents/px [psychology]
Perception
Perna SJ
Professional-family Relations
Qualitative Research
Robinson C
Stress Psychological
Terminal Care/mt [methods]
Terminal Care/px [psychology]
United States
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2017 List
Notes
<p>Discenza, Deborah</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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Palliative Care In The Nicu And Why Education Matters
Publisher
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Neonatal Network - Journal Of Neonatal Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Intensive Care Units Neonatal/og [organization & Administration]; Palliative Care; Parents; Emotional Intelligence; Humans; Infant Newborn; Palliative Care/mt [methods]; Palliative Care/px [psychology]; Parents/ed [education]; Parents/px [psychology]; Social Support
Creator
An entity primarily responsible for making the resource
Discenza D
Description
An account of the resource
Palliative care in the NICU gets a bad rap to the point where it is not even clearly described to families. There is a strong need for education and dispelling the myths that surround this very important type of support.
Identifier
An unambiguous reference to the resource within a given context
10.1891/0730-0832.36.1.48
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
Discenza D
Emotional Intelligence
Humans
Infant Newborn
Intensive Care Units Neonatal/og [organization & Administration]
Neonatal Network - Journal of Neonatal Nursing
Palliative Care
Palliative Care/mt [methods]
Palliative Care/px [psychology]
Parents
Parents/ed [education]
Parents/px [psychology]
September 2017 List
Social Support
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2017 List
URL Address
<a href="https://doi.org/10.1080/15524256.2016.1200518">https://doi.org/10.1080/15524256.2016.1200518</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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Exhaust All Measures: Ethical Issues In Pediatric End-of-life Care
Publisher
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Journal of Social Work in End-of-life and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Parents/px [psychology]; Pediatrics; Social Workers/px [psychology]; Terminal Care/es [ethics]; Terminal Care/px [psychology]; Decision Making; Family; Health Personnel/px [psychology]; Humans; Interviews As Topic; Professional-family Relations; Terminal Care/st [standards]; Withholding Treatment/es [ethics]
Creator
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Thieleman KJ; Wallace C; Cimino AN; Rueda HA
Description
An account of the resource
The death of a child may have a profound impact on parents, family members, and health care providers who provided care for the child. Unique challenges are faced by parents of seriously ill children as they must serve as the legal authority for health care decisions of children under age 18, although the child's wishes must also be considered. Social workers must balance core social work values, bioethical values, and psychosocial issues presented by such situations. While studies have been conducted with physicians and nurses regarding ethical issues in pediatric end-of-life care settings, little is known about how social workers experience these conflicts. This article utilizes two vignettes to illustrate potential ethical issues in this setting and applies the National Association of Social Workers Standards for Palliative and End of Life Care (NASW, 2004 ) to explore options for their resolution. These vignettes provide descriptions of possible reactions in this setting and can be used as a basis for further exploration of ethics in pediatric end-of-life care from a social work perspective.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1080/15524256.2016.1200518">10.1080/15524256.2016.1200518</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
Cimino AN
Decision Making
Family
Health Personnel/px [psychology]
Humans
Interviews As Topic
Journal of Social Work in End-of-Life & Palliative Care
Parents/px [psychology]
Pediatrics
Professional-family Relations
Rueda HA
September 2017 List
Social Workers/px [psychology]
Terminal Care/es [ethics]
Terminal Care/px [psychology]
Terminal Care/st [standards]
Thieleman KJ
Wallace C
Withholding Treatment/es [ethics]