1
40
36
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Text
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Citation List Month
May 2016 List
Dublin Core
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Title
A name given to the resource
When Parents Face The Death Of Their Child: A Nationwide Cross-sectional Survey Of Parental Perspectives On Their Child’s End- Of Life Care.
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
2016
Subject
The topic of the resource
Attitude Of Health Personnel; Attitude To Death; Cross-sectional Studies; Death; Decision Making; Female; Humans; Infant Newborn; Male; Parents/psychology; Pediatrics/standards; Perception; Resuscitation Orders/psychology; Surveys And Questionnaires; Switzerland; Terminal Care/standards
Pediatrics; End Of Life; Terminal Care; Questionnaire Survey; Parental Perspectives
Creator
An entity primarily responsible for making the resource
Zimmermann K; Bergstraesser E; Engberg S; Ramelet AS; Marfurt-Russenberger; Nicolas Von der Weid; Chantal Grandjean; Patricia Fahrni-Nater; Eva Cignacco
K; Von der Weid N
Description
An account of the resource
Background
Parents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the heterogeneity within the medical field of paediatrics, and fit into the local health care system. We need to better understand the perspectives of parents facing the death of their child in order to guide further development and evaluation of specialised paediatric palliative and end-of-life (EOL) care services.
Methods
Questionnaire survey to assess the EOL care perspectives of a Swiss population-based sample of bereaved parents who had lost a child due to a cardiac, neurological or oncological condition, or during the neonatal period in the years 2011 or 2012. The parental perspective was assessed with a newly developed and tested instrument that was structured according to six evidence-based quality domains. Responses regarding parental experiences and perceived satisfaction are described. Differences between the four diagnostic groups are analysed using a generalized estimation equation to account for the dyadic data structure.
Results
Of 307 eligible families, 267 could be contacted and 135 (51 %) consented to participate in this questionnaire survey. Our findings show positive parental experiences of their child’s EOL care and high perceived satisfaction with the care their child received. Parents of a child with cancer rated their experiences highest in most of the six quality domains and reported the highest satisfaction with care. The lowest scores were mainly reported by parents from the neurology group, with the exception of the shared decision making domain, where parents of neonates reported significantly less positive experiences.
Conclusions
Although positive in general, our study results suggest some areas for improvement. The integration of specialised paediatric palliative care has the potential to minimise lost opportunities to support and assist parents.
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
Attitude Of Health Personnel
Attitude To Death
Bergstraesser E
BMC Palliative Care
Chantal Grandjean
Cross-sectional Studies
Death
Decision Making
End Of Life
Engberg S
Eva Cignacco
K
Female
Humans
Infant Newborn
Male
Marfurt-Russenberger
May 2016 List
Nicolas Von der Weid
Parental Perspectives
Parents/psychology
Patricia Fahrni-Nater
Pediatrics
Pediatrics/standards
Perception
Questionnaire Survey
Ramelet AS
Resuscitation Orders/psychology
Surveys And Questionnaires
Switzerland
Terminal Care
Terminal Care/standards
Von der Weid N
Zimmermann K
-
Text
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Citation List Month
May 2016 List
Dublin Core
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Title
A name given to the resource
What Are Palliative Care Physicians For Adults Taught On Palliative Care For Children? Paediatric Aspects In Palliative Care Curricula For Adults.
Publisher
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Klinische Pädiatrie
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adult; Child; Curriculum; Education Medical Continuing; Germany; Humans; Neoplasms/psychology; Neoplasms/therapy; Palliative Care; Patient Care Team; Pediatrics/education
Creator
An entity primarily responsible for making the resource
Schiessl C; Gottschling S; Gronwald BM
Description
An account of the resource
BACKGROUND:
Children suffering from life limiting diseases are frequently cared for by adult palliative care teams due to missing paediatric structures in that field. However it is questionable whether palliative care curricula for physicians comprehensively cover issues of paediatric palliative care (PaedPC).
AIM:
To identify all PaedPC issues included in inter-professional or medical palliative care curricula (PCC) and to evaluate the breadth and quality of PaedPC issues covered in these curricula.
DESIGN:
Inter-professional or medical palliative care curricula (PCC) were identified by an extensive literature review in German and English using the search-engines Google as well as Medline, MedPilot and Pubmed.
RESULTS:
Worldwide 30 PCC were identified, with only 15 curricula mentioning any PaedPC issues. Of those 15 curricula, up to 22 PaedPC topics were highlighted in each. In 10 or more PaedPC following topics were highlighted: grief and bereavement in family, parents and siblings; communication with children; paediatric malignancies; pain management in PPC and pharmacology. In the majority of PCC curricula where PaedPC issues were identified the following topics were mentioned- grief and bereavement in the family, parents and siblings, communication with children, paediatric malignancies, paediatric pain management and pharmacology.
CONCLUSIONS:
The variability of inclusion of PaedPC issues and the lack of depth and standardisation of knowledge, skills and attitudes in PaedPC issues included in PCC curricula is not sufficient to guide adult palliative care physicians in their clinical work with children suffering from life limiting diseases.
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
Adult
Child
Curriculum
Education Medical Continuing
Germany
Gottschling S
Gronwald BM
Humans
Klinische Pädiatrie
May 2016 List
Neoplasms/psychology
Neoplasms/therapy
Palliative Care
Patient Care Team
Pediatrics/education
Schiessl C
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The Needs Of Siblings Of Children With A Life-threatening Illness, Part 2: Psychometric Validation Of The Ibesfems.
Publisher
An entity responsible for making the resource available
Palliative & Supportive 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
Adjustment; Quality Of Life; Pediatric Palliative Care; Childhood-cancer; Young-people; Instrument Scni; Health Policy & Services; Families; Support; Unmet Needs
Needs; Palliative Care; Pediatrics; Questionnaire Development; Siblings.
Creator
An entity primarily responsible for making the resource
Olivier D’avignon M; Dumont S; Valois P; Cohen SR
Description
An account of the resource
OBJECTIVE: The presence of a child afflicted with a life-threatening illness is a difficult situation for the child's siblings, especially when their own needs are left unmet. The present article describes the first three phases of research involved in the conceptualization, development, and content validation of an initial version of the Inventaire des Besoins de la Fratrie d'Enfants Malades Sévèrement (IBesFEMS) [Needs Inventory for Siblings of Critically ill Children].
METHOD: The first phase of the development of this instrument was conducted using qualitative methodology (focus groups: 6 siblings, 8 parents). The second phase consisted of validating the content of a pool of items developed according to the needs identified in the first phase. Some 21 participants (3 psychometricians, 3 researchers, 9 clinicians, and 6 siblings) evaluated each item for relevance and clarity. Finally, during the third phase, the acceptability and administration procedures of the preliminary version of the instrument were assessed qualitatively by five siblings.
RESULTS: The first phase led to production of a typology made up of 43 needs in 10 different environments. The second phase allowed for selection of the items that were clearest and most relevant, based on expert opinion. This procedure gave rise to a first version of the IBesFEMS, which consisted of 48 items.
SIGNIFICANCE OF RESULTS: The IBesFEMS appears to be a promising tool for specifically assessing the needs of the adolescent siblings of seriously ill children.
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
Adjustment
Childhood-cancer
Cohen SR
Dumont S
Families
Health Policy & Services
Instrument Scni
May 2016 List
Needs
Olivier d’avignon M
Palliative & Supportive Care
Palliative Care
Pediatric Palliative Care
Pediatrics
Quality Of Life
Questionnaire Development
Siblings.
Support
Unmet Needs
Valois P
Young-people
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The Development And Evaluation Of A Holistic Needs Assessment Within Children’s Palliative Care.
Publisher
An entity responsible for making the resource available
International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Child; Holistic Nursing; Humans; Needs Assessment; Palliative Care; Pilot Projects
Assessment; Holistic; Pediatrics; Palliative; Qualitative
Creator
An entity primarily responsible for making the resource
Hartley G; Berger Z; Maynard L
Description
An account of the resource
Caring for a child with a life-limiting condition brings a number of challenges and many families require additional support. The need for services to move away from a 'one size fits all' approach to a personalised care planning approach is well recognised, as is the value of establishing a robust way of assessing family members' differing needs. A number of assessment tools that consider individuals' holistic needs already exist. These are predominantly for the adult cancer population and exclude consideration of the child in its system. There was therefore a need to develop a tool that would appropriately meet the needs of children and parents who access services provided by a children's hospice. The tool was evaluated qualitatively. Feedback was positive; the experience of professionals was one of concordance with their ethical stance, improved communication, improved documentation and the wish to embed the tool into daily practice.
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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
Assessment
Berger Z
Child
Hartley G
Holistic
Holistic Nursing
Humans
International Journal of Palliative Nursing
May 2016 List
Maynard L
Needs Assessment
Palliative
Palliative Care
Pediatrics
Pilot Projects
Qualitative
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Survival Among Infants Born At 22 Or 23 Weeks’ Gestation Following Active Prenatal And Postnatal Care.
Publisher
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Jama Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
Mehler K; Oberthuer A; Keller T; Becker I; Valter M; Roth B; Kribs A
Description
An account of the resource
IMPORTANCE:
Rates of survival for infants born at the border of viability are still low and vary considerably among neonatal intensive care units.
OBJECTIVE:
To determine whether higher survival rates and better short-term outcomes for infants born at 22 or 23 weeks' gestation may be achieved by active prenatal and postnatal care.
DESIGN, SETTING, AND PARTICIPANTS:
Retrospective study of 106 infants born at 22 or 23 weeks of gestation at a level III neonatal intensive care unit at the University of Cologne Medical Centre in Cologne, Germany, between January 1, 2010, and December 31, 2014. Data analysis was performed in June 2015.
EXPOSURES:
Active prenatal and postnatal care.
MAIN OUTCOMES AND MEASURES:
Survival until hospital discharge and survival without neonatal or short-term severe complications (defined as high-grade intraventricular hemorrhage, surgery for abdominal complications, bronchopulmonary dysplasia, or retinopathy of prematurity).
RESULTS:
Of 106 liveborn infants (45 born at 22 weeks and 61 born at 23 weeks and 6 days), 20 (19%) received palliative care (17 born at 22 weeks and 3 born at 23 weeks), and 86 (81%) received active care (28 born at 22 weeks and 58 born at 23 weeks). Of the 86 infants who received active care (mean [SD] maternal age, 32 [6] years), 58 (67%) survived until hospital discharge (17 born at 22 weeks and 41 born at 23 weeks). Eighty-five infants survived without severe complications, with 1 infant born at 22 weeks excluded because of missing data (6 of 27 [22%] born at 22 weeks, and 16 of 58 [28%] born at 23 weeks). Survival was predicted by the Apgar score after 5 minutes (odds ratio, 0.62 [95% CI, 0.46-0.84]) and birth weight (odds ratio, 0.001 [95% CI, 0.00-0.40]).
CONCLUSIONS AND RELEVANCE:
One in 4 infants born at the border of viability and offered active care survived without severe complications. This finding should be considered for individualized parental approaches and decision making. Active follow-up information is required to determine childhood outcomes.
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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
Becker I
JAMA Pediatrics
Keller T
Kribs A
May 2016 List
Mehler K
Oberthuer A
Roth B
Valter M
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Spiritual Needs Of Families With Bereavement And Loss Of An Infant In The Neonatal Intensive Care Unit: A Qualitative Study
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
End Of Life Care; Clinical Neurology; Palliative Care; Medicine General & Internal; Health Care Sciences & Services; Providers
Iran; Neonatal Intensive Care Unit; Spiritual Needs; End Of Life; Family; Infants
Creator
An entity primarily responsible for making the resource
N Sadeghi; Hasanpour M; Heidarzadeh M; Alamolhoda A; Waldman E
Description
An account of the resource
CONTEXT:
The hospital is a place full of distress and questions about the meaning of life. The death of a child can cause a spiritual struggle and crisis. Therefore, it is necessary for health care providers in the neonatal intensive care unit (NICU) to assess the spiritual needs of families that have lost a child.
OBJECTIVES:
The purpose of this study was to explore the spiritual needs of families in Iran at the end of their baby's life and through bereavement in the NICU.
METHODS:
This study was an exploratory qualitative study performed using purposeful sampling and semi-structured interviews with 24 participants. Inclusion criteria for families, nurses, and physicians included having experienced at least one newborn death in the last six months in the NICU. The research environment was the NICU in Isfahan, one of the largest cities in Iran.
RESULTS:
Data analysis revealed three main themes: spiritual belief in a supernatural power, the need for comfort of the soul, and human dignity for the newborn.
CONCLUSION:
The results of this study created a new vision in addressing spiritual needs of Iranian families who experience the death of a newborn.
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
Alamolhoda A
Clinical Neurology
End Of Life
End Of Life Care
Family
Hasanpour M
Health Care Sciences & Services
Heidarzadeh M
Infants
Iran
Journal of Pain and Symptom Management
May 2016 List
Medicine General & Internal
N Sadeghi
Neonatal Intensive Care Unit
Palliative Care
Providers
Spiritual Needs
Waldman E
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Short Break And Emergency Respite Care: What Options For Young People With Life-limiting Conditions?
Publisher
An entity responsible for making the resource available
International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adolescent; Adult; Emergency Medical Services; Focus Groups; Humans; Interviews As Topic; Respite Care; Terminally Ill; Young Adult
Life-limiting Conditions; Palliative Care; Respite Care; Short Breaks; Transition; Young People
Creator
An entity primarily responsible for making the resource
Mitchell TK; Knighting K; O’Brien MR; Jack BA
Description
An account of the resource
BACKGROUND:
Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care.
OBJECTIVE:
To explore alternative short break and emergency respite care options to children's hospice care.
METHODS:
A two-phase evaluation with young people, families and professionals. Phase 1: qualitative semi-structured interviews and focus groups (n=53). Phase 2: mixed-method survey (n=82), qualitative findings only.
RESULTS:
There were few, or no, appropriate short break and emergency respite care alternatives when children's hospice care was not available that can meet the need of young people with life-limiting conditions, creating anxiety for children's hospice users and those leaving the service as a result of reaching transition age or through no longer meeting the children's hospice eligibility criteria.
CONCLUSION:
Access to appropriate short break and emergency respite care is required to prevent lifelong negative consequences for young people with life-limiting conditions, their family and society. Research is undoubtedly required to explore the impact and outcomes of children's hospice discharge for young people and their family. Particular attention should be paid to the lack of services for an increasing population making the transition from children's hospices.
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
Adolescent
Adult
Emergency Medical Services
Focus Groups
Humans
International Journal of Palliative Nursing
Interviews As Topic
Jack BA
Knighting K
Life-limiting Conditions
May 2016 List
Mitchell TK
O’Brien MR
Palliative Care
Respite Care
Short Breaks
Terminally Ill
Transition
Young Adult
Young People
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Shared Decision Making For Infants Born At The Threshold Of Viability: A Prognosis-based Guideline
Publisher
An entity responsible for making the resource available
Journal Of Perinatology : Official Journal Of The California Perinatal Association
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
Lemyre B; Daboval T; Dunn S; Kekewich M; Jones G; Wang D; Mason-Ward M; Moore GP
Description
An account of the resource
OBJECTIVE:
Making prenatal decisions regarding resuscitation of extremely premature infants, based on gestational age alone is inadequate. We developed a prognosis-based guideline.
STUDY DESIGN:
We followed a five step approach and used the AGREE II framework: (1) systematic review and critical appraisal of published guidelines; (2) identification of key medical factors for decision making; (3) systematic reviews; (4) creation of a multi-disciplinary working group and (5) external consultation and appraisal.
RESULT:
No published guideline met high-quality appraisal criteria. Survival, neurodevelopmental disability, quality of life of child and parents, and maternal mortality and risk of long-term morbidity were identified as key for quality decision-making. Eighteen stakeholders (including parents) advocated for the incorporation of parents' values and preferences in the process.
CONCLUSION:
A novel framework, based on prognosis, was generated to guide when early intensive and palliative care may both be offered to expectant parents. Pre-implementation assessment is underway to identify barriers and facilitators to putting in practice.
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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
Daboval T
Dunn S
Jones G
Journal of perinatology : official journal of the California Perinatal Association
Kekewich M
Lemyre B
Mason-Ward M
May 2016 List
Moore GP
Wang D
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Perceptions Of Palliative Care In The Nicu.
Publisher
An entity responsible for making the resource available
Advances In Neonatal 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
Communication; Continuity Of Patient Care; Emotions; Female; Humans; Infant Newborn; Intensive Care Units Neonatal; Interviews As Topic; Male; Mothers/psychology; Palliative Care/utilization; Privacy; Qualitative Research; Social Support
Creator
An entity primarily responsible for making the resource
Falck AJ; Moorthy S; Hussey-Gardner B
Description
An account of the resource
BACKGROUND AND PURPOSE:
The American Academy of Pediatrics supports palliative care (PC) for all children with life-threatening illnesses. Thus, many neonatal intensive care unit (NICU) patients and their families could benefit from PC. Our study objective was to examine provision of PC as experienced by mothers and healthcare providers (HCPs) of NICU patients with life-threatening illnesses. Palliative care components explored included communication, choices, comfort, psychosocial and spiritual needs, and coordination of care.
METHODS:
In this qualitative, descriptive study, we conducted semistructured interviews with mothers of infants with life-threatening illnesses and NICU HCPs who cared for these infants. Mothers selected HCPs who were key figures during their infant's NICU stay to participate. Interviews were transcribed and manually coded until themes emerged and theoretical saturation was achieved. Researchers reviewed charts for demographics and notes pertaining to PC. Triangulation of maternal interviews, HCP interviews, and chart notes was performed.
RESULTS:
Theoretical saturation was achieved after 12 interviews. Mothers identified 5 nurses and 1 physician to be interviewed. Five themes were identified following data analysis and triangulation: (1) communication, (2) privacy, (3) continuity of care and relationship building, (4) maternal knowledge seeking, and (5) emotional turmoil.
IMPLICATIONS FOR PRACTICE AND RESEARCH:
Of domains of pediatric PC explored, participants emphasized transparent communication, family meetings as a venue for collaboration and shared decision making, the significance of psychosocial support for maternal emotional distress, and the importance of continuity of care across an often long and stressful hospitalization. Although mothers desired privacy, participants valued the security of the open-room NICU design. Future research should address components of PC that predominate in this specialized population.
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
Advances in Neonatal Care
Communication
Continuity Of Patient Care
Emotions
Falck AJ
Female
Humans
Hussey-Gardner B
Infant Newborn
Intensive Care Units Neonatal
Interviews As Topic
Male
May 2016 List
Moorthy S
Mothers/psychology
Palliative Care/utilization
Privacy
Qualitative Research
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
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Parents’ Experiences And Wishes At End Of Life In Children With Spinal Muscular Atrophy Types I And Ii.
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
2016
Subject
The topic of the resource
Nationwide; Death; Health; Siblings; Palliative Care; Pediatrics
Bereavement; End-of-life Care; Location Of Death; Neuromuscular Disorders; Palliative Care; Spinal Muscular Atrophy
Creator
An entity primarily responsible for making the resource
Lovgren M; Sejersen T; Kreicbergs U
Description
An account of the resource
OBJECTIVE:
To explore experiences and wishes of bereaved parents concerning end-of-life care for their child with severe spinal muscular atrophy.
STUDY DESIGN:
A follow-up survey was conducted in 2013 on parents of deceased Swedish children who were born between 2000 and 2010 and later diagnosed with spinal muscular atrophy type I or II (n = 48). The questions used in this study covered location of death (LoD), support from health care staff, and parents' wishes and concerns about their child's end-of-life care.
RESULTS:
One-half of those who had wishes about LoD (16/32) wanted their child to die at home, rather than at the hospital. All of those who wanted the child to die at the hospital had their wishes fulfilled. Among those who wanted the child to die at home, 10 of 16 got their wish. Among parents who talked with a physician about how they wanted their child to pass away (n = 26), all but 2 had their wishes fulfilled. Thirty-six parents (75%) reported that their child had siblings: 12 reported that the sibling was too young for professional psychological support, and only 4 of the remaining 24 siblings received such support after the death of their brother or sister.
CONCLUSIONS:
Parents' communication with the physician about their wishes and concerns regarding their child's end-of-life care and preferred LoD contributed to their wishes being fulfilled. The wish of hospital death was fulfilled more often than the wish of home deaths. A vast majority of siblings did not receive psychological support after death of their brother or sister.
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
Bereavement
Death
End-of-life Care
Health
Journal of Pediatrics
Kreicbergs U
Location Of Death
Lövgren M
May 2016 List
Nationwide
Neuromuscular Disorders
Palliative Care
Pediatrics
Sejersen T
Siblings
Spinal Muscular Atrophy
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Parental Physical Proximity In End-of- Life Care In The Picu.
Publisher
An entity responsible for making the resource available
Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
End Of Life Care; Patient; Quality; Unit; Pediatric Palliative Care; Perspectives; Cancer; Critical Care Medicine; Qualitative; Family; Intensive Care; Childs Death; Pediatric Intensive-care; Priorities; Pediatrics; Parenting
Creator
An entity primarily responsible for making the resource
Falkenburg JL; Tibboel D; Ganzevoort RR; Gischler S; Hagoort J; van Dijk M
Description
An account of the resource
OBJECTIVE:
Health professionals in PICUs support both child and parents when a child's death is imminent. Parents long to stay connected to their dying child but the high-tech environment and treatment implications make it difficult to stay physically close. This study explores in what sense physical aspects of end-of-life care in the PICU influence the parent-child relationship.
DESIGN:
Retrospective, qualitative interview study.
SETTING:
Level 3 PICU in Erasmus Medical Center in the Netherlands.
PARTICIPANTS:
Thirty-six parents of 20 children who had died in this unit 5 years previously.
MEASUREMENTS AND MAIN RESULTS:
Parents vividly remembered the damage done to the child's physical appearance, an inevitable consequence of medical treatment. They felt frustrated and hurt when they could not hold their child. Yet they felt comforted if facilitated to be physically close to the dying child, like lying with the child in one bed, holding the child in the hour of death, and washing the child after death.
CONCLUSIONS:
End-of-life treatment in the PICU presents both a barrier and an opportunity for parents to stay physically connected to their child. Parents' experiences suggest that aspects of physicality in medical settings deserve more attention. Better understanding of the significance of bodily aspects-other than pain and symptom management-improves end-of-life support and should be part of the humane approach to families.
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
Cancer
Childs Death
Critical Care Medicine
End Of Life Care
Falkenburg JL
Family
Ganzevoort RR
Gischler S
Hagoort J
Intensive Care
May 2016 List
Parenting
Patient
Pediatric Critical Care Medicine
Pediatric Intensive-care
Pediatric Palliative Care
Pediatrics
Perspectives
Priorities
Qualitative
Quality
Tibboel D
Unit
van Dijk M
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
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Title
A name given to the resource
Parental Decision-making On
Utilisation Of Out-of- Home Respite In Children’s Palliative Care: Findings Of
Qualitative Case Study Research - A Proposed New Model.
Publisher
An entity responsible for making the resource available
Child: Care, Health And Development
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adolescent; Adult; Child; Child Preschool; Decision Making; Female; Humans; Ireland/epidemiology; Longitudinal Studies; Male; Palliative Care/psychology; Parents/psychology; Qualitative Research; Quality Of Health Care; Respite Care; Social Support; Terminally Ill/psychology
Children; Pediatrics; Palliative Care; Parents; Respite
Creator
An entity primarily responsible for making the resource
Ling J; Payne S; Connaire K; McCarron M
Description
An account of the resource
Background
Respite in children's palliative care aims to provide a break for family's from the routine of caring. Parental decision-making regarding the utilisation of out-of-home respite is dependent on many interlinking factors including the child's age, diagnosis, geographical location and the family's capacity to meet their child's care needs. A proposed model for out-of-home respite has been developed based on the findings of qualitative case study research.
Methods
Utilising multiple, longitudinal, qualitative case study design, the respite needs and experiences of parents caring for a child with a life-limiting condition were explored. Multiple, in-depth interviews were undertaken with the parents identified by a hospital-based children's palliative care team. Data were analysed using thematic analysis. Each individual case consists of a whole study. Cross-case comparison was also conducted.
Results
Nine families were recruited and followed for two years. A total of 19 in-depth interviews were conducted with mothers and fathers (one or both) caring for a child with a life-limiting condition in Ireland. Each family reported vastly different needs and experiences of respite from their own unique perspective. Cross-case comparison showed that for all parents utilising respite care, regardless of their child's age and condition, home was the location of choice. Many interlinking factors influencing these decisions included: past experience of in-patient care, and trust and confidence in care providers. Issues were raised regarding the impact of care provision in the home on family life, siblings and the concept of home.
Conclusion
Respite is an essential element of children's palliative care. Utilisation of out-of-home respite is heavily dependent on a number of interlinked and intertwined factors. The proposed model of care offers an opportunity to identify how these decisions are made and may ultimately assist in identifying the elements of responsive and family-focused respite that are important to families of children with life-limiting conditions.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Adolescent
Adult
Child
Child Preschool
Child: Care, Health and Development
Children
Connaire K
Decision Making
Female
Humans
Ireland/epidemiology
Ling J
Longitudinal Studies
Male
May 2016 List
McCarron M
Palliative Care
Palliative Care/psychology
Parents
Parents/psychology
Payne S
Pediatrics
Qualitative Research
Quality Of Health Care
Respite
Respite Care
Social Support
Terminally Ill/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
May 2016 List
Dublin Core
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Title
A name given to the resource
Parent Reported Outcomes Of Quality Care And Satisfaction In The Context Of A Life-limiting Fetal Diagnosis.
Publisher
An entity responsible for making the resource available
Journal Of Maternal, Fetal And Neonatal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Parental Satisfaction; Patient Reported Outcomes; Perinatal Palliative Care; Quality Of Health Care
Creator
An entity primarily responsible for making the resource
Wool C; Repke JT; Woods AB
Description
An account of the resource
Objective: To identify which quality indicators (QI) predict patient satisfaction.
Methods: A cross-sectional design using a validated tool was administered using a Web-based platform. Parents (n = 405) who experienced a life-limiting fetal diagnosis and opted to continue their pregnancy provided feedback on 37 QI and satisfaction with prenatal care. Descriptive analyses and logistic regression identified relationships among variables.
Results: Parental satisfaction with care was 75.6%. Statistically significant differences in mean scores were reported with satisfied patients reporting higher agreement with quality indicators. Parents who were satisfied with their care had 1.9 times the odds of reporting that consistent care was provided (CI: 1.4–2.4, p < 0.01), 1.8 times the odds of reporting compassionate care (CI: 1.4–2.5, p < 0.01) and 1.8 times the odds that they received help to cope with their emotions (CI: 1.4–2.3, p < 0.01). The model correctly predicted parent satisfaction 92% of the time.
Conclusion: Provision of consistent prenatal care is an important quality indicator for this population of parents. The odds of securing satisfied parents increase when families are treated with compassion and given resources to help them cope with the emotionally devastating experiences associated with a life-limiting fetal diagnosis.
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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
Journal of Maternal, Fetal and Neonatal Medicine
May 2016 List
Parental Satisfaction
Patient Reported Outcomes
Perinatal Palliative Care
Quality Of Health Care
Repke JT
Woods AB
Wool C
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
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Title
A name given to the resource
Nurse Knowledge, Work Environment, And Turnover In Highly Specialized Pediatric End-of- Life Care.
Publisher
An entity responsible for making the resource available
American Journal Of Hospice And Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Rn Turnover; Rn Work Environment; Advanced Practice Nurses; Nurse Intellectual Capital Theory; Perinatal Hospice; Perinatal Palliative Care
Creator
An entity primarily responsible for making the resource
Lindley LC; Cozad MJ
Description
An account of the resource
OBJECTIVE:
To examine the relationship between nurse knowledge, work environment, and registered nurse (RN) turnover in perinatal hospice and palliative care organizations.
METHODS:
Using nurse intellectual capital theory, a multivariate analysis was conducted with 2007 National Home and Hospice Care Survey data.
RESULTS:
Perinatal hospice and palliative care organizations experienced a 5% turnover rate. The professional experience of advanced practice nurses (APNs) was significantly related to turnover among RNs (β = -.032, P < .05). Compared to organizations with no APNs professional experience, clinical nurse specialists and nurse practitioners significantly reduced RN turnover by 3 percentage points. No other nurse knowledge or work environment variables were associated with RN turnover. Several of the control variables were also associated with RN turnover in the study; Organizations serving micropolitan (β = -.041, P < .05) and rural areas (β = -.037, P < .05) had lower RN turnover compared to urban areas. Organizations with a technology climate where nurses used electronic medical records had a higher turnover rate than those without (β = .036, P < .05).
CONCLUSION:
The findings revealed that advanced professional experience in the form of APNs was associated with reductions in RN turnover. This suggests that having a clinical nurse specialist or nurse practitioner on staff may provide knowledge and experience to other RNs, creating stability within the organization.
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
Advanced Practice Nurses
American Journal of Hospice and Palliative Medicine
Cozad MJ
Lindley LC
May 2016 List
Nurse Intellectual Capital Theory
Perinatal Hospice
Perinatal Palliative Care
Rn Turnover
Rn Work Environment
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Neonatal End Of Life Care In A Tertiary Care Centre In Canada: A Brief Report
Publisher
An entity responsible for making the resource available
Zhongguo Dang Dai Er Ke Za Zhi [chinese Journal Of Contemporary Pediatrics]
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Humans Infant Newborn; Palliative Care; Retrospective Studies; Terminal Care; Tertiary Care Centers
Creator
An entity primarily responsible for making the resource
Sankaran K; Hedin E; Hodgson-Viden H
Description
An account of the resource
OBJECTIVE:
To describe the processes followed by a neonatal team engaging parents with respect to end of life care of babies in whom long term survival was negligible or impossible; and to describe feedback from these parents after death of their child.
METHODS:
A retrospective review was conducted of health records of neonates who had died receiving palliative care over a period of 5 years at a tertiary neonatal centre. Specific inclusion criteria were determined in advance that identified care given by a dedicated group of caregivers.
RESULTS:
Thirty infants met eligibility criteria. After excluding one outlier an average of 4 discussions occurred with families before an end of life decision was arrived at. Switching from aggressive care to comfort care was a more common decision-making route than having palliative care from the outset. Ninety per cent of families indicated satisfaction with the decision making process at follow-up and more than half of them returned later to meet with the NICU team. Some concerns were expressed about the availability of neonatologists at weekends.
CONCLUSIONS:
A compassionate and humane approach to the family with honesty and empathy creates a positive environment for decision-making. An available, experienced team willing to engage families repeatedly is beneficial. Initiating intensive care with subsequent palliative care is acceptable to families and caregivers.
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
Hedin E
Hodgson-Viden H
Humans Infant Newborn
May 2016 List
Palliative Care
Retrospective Studies
Sankaran K
Terminal Care
Tertiary Care Centers
Zhongguo Dang Dai Er Ke Za Zhi [Chinese journal of contemporary pediatrics]
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Methadone Conversion In Infants
And Children: Retrospective Cohort Study Of 199 Pediatric Inpatients.
Publisher
An entity responsible for making the resource available
Journal Of Opioid Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Administration Oral; Adolescent; Age Factors; Analgesics Opioid/administration & Dosage; Analgesics Opioid/adverse Effects; Child; Child Preschool; Consciousness/drug Effects; Drug Administration Schedule; Drug Dosage Calculations; Drug Monitoring; Drug Overdose/etiology; Drug Substitution; Hospitals Pediatric; Humans; Infant; Infant Newborn; Inpatients; Intubation Intratracheal; Methadone/administration & Dosage; Methadone/adverse Effects; Minnesota; Pain/diagnosis; Pain/drug Therapy; Pharmacy Service Hospital; Respiration Artificial; Retrospective Studies; Risk Factors; Substance Withdrawal Syndrome/etiology; Tertiary Care Centers; Time Factors; Treatment Outcome; Substances; Analgesics Opioid; Methadone
Creator
An entity primarily responsible for making the resource
Fife A; Postier A; Flood A; Friedrichsdorf SJ
Description
An account of the resource
OBJECTIVE:
Methadone administration has increased in pediatric clinical settings. This review is an attempt to ascertain an equianalgesic dose ratio for methadone in the pediatric population using standard adult dose conversion guidelines.
SETTING:
US tertiary children's hospital.
PATIENTS:
Hospitalized pediatric patients, 0-18 years of age.
MAIN OUTCOME MEASURES:
A retrospective chart review was conducted for patients who were converted from their initial opioid therapy regimen (morphine, hydromorphone, and/or fentanyl) to methadone. The primary endpoint was whether or not a dose correction was needed for methadone in the 6 days following conversion using standard dose conversion charts for adults. Documented clinical signs of withdrawal, unrelieved pain, or oversedation were examined.
RESULTS:
The majority (53.7 percent) of the 199 children were converted to methadone on intensive care units prior extubation or postextubation. The mean conversion ratio was 23.7 mg of oral morphine to 1 mg of oral methadone (median, 18.8 mg:1 mg, SD=25.7). Most patients experienced an adequate conversion (n=115, 57.8 percent), while 83 (41.7 percent) appeared undermedicated, and one child was oversedated. There were no associations found with conversion ratios for initial morphine dose, days to conversion, or effect of withdrawal of concomitant agents with potential for withdrawal.
CONCLUSIONS:
Opioid conversion to methadone is commonly practiced at our institution; however, dosing was significantly lower compared to adult conversion ratios, and more than 40 percent of children were undermedicated. The majority of children in this study received opioids for sedation while intubated and ventilated; therefore, safe and efficacious pediatric methadone conversion rates remain unclear. Prospective studies are needed.
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
Administration Oral
Adolescent
Age Factors
Analgesics Opioid
Analgesics Opioid/administration & Dosage
Analgesics Opioid/adverse Effects
Child
Child Preschool
Consciousness/drug Effects
Drug Administration Schedule
Drug Dosage Calculations
Drug Monitoring
Drug Overdose/etiology
Drug Substitution
Fife A
Flood A
Friedrichsdorf SJ
Hospitals Pediatric
Humans
Infant
Infant Newborn
Inpatients
Intubation Intratracheal
Journal of opioid management
May 2016 List
Methadone
Methadone/administration & Dosage
Methadone/adverse Effects
Minnesota
Pain/diagnosis
Pain/drug Therapy
Pharmacy Service Hospital
Postier A
Respiration Artificial
Retrospective Studies
Risk Factors
Substance Withdrawal Syndrome/etiology
Substances
Tertiary Care Centers
Time Factors
Treatment Outcome
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Lethal Fetal Abnormalities: How To Approach Perinatal Palliative Care?
Publisher
An entity responsible for making the resource available
Journal Of Maternal, Fetal And Neonatal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Obstetrics & Gynecology; Anomalies; Prenatal-diagnosis; Malformations; Pregnancy; Professionals
Ethical Issue; Fetal Abnormality; Information; Palliative Care; Perinatal Medicine
Creator
An entity primarily responsible for making the resource
Tosello B; Haddad G; Gire C; Einaudi MA
Description
An account of the resource
OBJECTIVE:
Some of the antenatally diagnosed fetal pathologies are unlikely to get compatible with life. Still some women choose to continue with pregnancy. Subsequently, perinatal palliative care (PPC) has become a constructive demarche in such situations. Our study, based on a multicentric survey, reports some cases of fetal pathologies considered as lethal according to perinatal professionals and reveals the decisional process in each case.
METHODS:
We sent by emails a questionnaire to 434 maternal-fetal medicine specialists and fetal care pediatric specialists at 48 multidisciplinary centers for prenatal diagnosis.
RESULTS:
The participation rate was 49.3%. In total, 61 obstetric-gynecologists and 68 neonatologists completed the survey. The results showed that 35.4% of the pregnant women asked for the continuation of pregnancy and 24.7% asked for the termination of pregnancy. More than half of professionals (52.9%) took the initiative of informing women about the options for birth support (including PPC), while 32.7% of obstetric gynecologists did not take this initiative versus 10.2% of neonatologists (p < 0.01).
CONCLUSION:
This study demonstrates the absolute need to provide PPC training for professionals and to standardize its practices.
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
Anomalies
Einaudi MA
Ethical Issue
Fetal Abnormality
Gire C
Haddad G
Information
Journal of Maternal, Fetal and Neonatal Medicine
Malformations
May 2016 List
Obstetrics & Gynecology
Palliative Care
Perinatal Medicine
Pregnancy
Prenatal-diagnosis
Professionals
Tosello B
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Investing In Uncertainty: Young Adults With Life-limiting Conditions Achieving Their Developmental Goals.
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
2016
Subject
The topic of the resource
Disabilities; Transition; Adolescent; Policy; Perspectives; Health-care; Palliative Care; Health Care Sciences & Services; Youth
Creator
An entity primarily responsible for making the resource
Cook KA; Jack SM; Siden H; Thabane L; Browne G
Description
An account of the resource
BACKGROUND:
With improvements in pediatric care and technology, more young adults (YAs) with life-limiting conditions (LLCs) are surviving into adulthood. However, they have limited expectations to live beyond the first decade of adulthood. This study describes the monumental efforts required for YAs with LLCs to achieve their goals in an abbreviated life.
OBJECTIVES:
The experiences and aspirations of YAs with LLCs to achieve their goals are relatively unknown. This report focuses on their experiences of living with uncertainty and its impact on achieving developmental goals.
DESIGN:
This study is one component of a larger descriptive study using an innovative bulletin board focus group to examine life experiences of YAs with LLCs.
RESULTS:
YAs with LLCs share the aspirations and goals of all YAs. Some participants demonstrated a striking capacity to navigate system barriers and achieve their goals, whereas others "got stuck" resulting in lost opportunities. Successful personal life investments were possible if resources were made available, coordinated, navigable, and responsive to new and special requests. Transformative changes to health, social care, and community services are necessary to support their YA ambitions.
CONCLUSIONS:
This study gave voice to those who were previously unheard and demonstrates the monumental hurdles YAs with LLCs face to achieve their goals. A palliative approach to care can mitigate unnecessary hardships and support their goals.
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
Adolescent
Browne G
Cook KA
Disabilities
Health Care Sciences & Services
Health-care
Jack SM
Journal of Palliative Medicine
May 2016 List
Palliative Care
Perspectives
Policy
Siden H
Thabane L
Transition
Youth
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Improving And Validating Children’s Nurses Communication Skills With Standardized Patients In End Of Life Care.
Publisher
An entity responsible for making the resource available
Child Health 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
Case-based Scenarios; Children’s Nursing; End-of-life Care; Standardized Patients
Creator
An entity primarily responsible for making the resource
Kenny G; Cargil J; Hamilton C; Sales R
Description
An account of the resource
Improving and validating children’s
nurses communication skills with standardized patients in end of life care.
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
Cargil J
Case-based Scenarios
Child Health Care
Children’s Nursing
End-of-life Care
Hamilton C
Kenny G
May 2016 List
Sales R
Standardized Patients
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Identifying The Deliberate Prevention And Intervention
Strategies Of Pediatric Palliative Care Teams Supporting Providers During Times
Of Staff Distress.
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
2016
Subject
The topic of the resource
Burnout; Framework; Moral Distress; Health Care Sciences & Services
Creator
An entity primarily responsible for making the resource
Jonas DF; Bogetz JF
Description
An account of the resource
BACKGROUND:
Pediatric palliative care focuses on caring for children who are seriously ill and their families. These children are often attended to by many other providers who face various challenges as they support these families. Issues involving staff distress are common. Although involving pediatric palliative care teams is recommended, little has been discussed in the literature about the roles and deliberate strategies that pediatric palliative care providers deploy when supporting staff.
OBJECTIVE:
This case description focuses on staff distress experienced by pediatric providers and aims to make specific recommendations regarding the ways in which pediatric palliative care teams can be helpful in supporting the needs of providers in these challenging care situations.
DESIGN:
Study and analysis of four pediatric palliative care cases from multidisciplinary perspectives.
CONCLUSIONS:
In challenging pediatric patient care situations, pediatric palliative care teams may be utilized to support providers when they experience staff distress. Techniques also used with patients, such as active listening and nonjudgmental validation, can be useful. Respecting each person's opinion, establishing goals of care and fostering open communication about the complexities of each child's case can be helpful to prevent burnout and job loss. By promoting understanding and open communication, providers can feel supported in caring for children with serious illnesses and their families.
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
Bogetz JF
Burnout
Framework
Health Care Sciences & Services
Jonas DF
Journal of Palliative Medicine
May 2016 List
Moral Distress
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Helping Parents Live With The Hole In Their Heart: The Role Of Health Care Providers And Institutions In The Bereaved Parents’ Grief Journeys.
Publisher
An entity responsible for making the resource available
Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Death; Analysis; Child; Parents; Parent And Child; Bereavement; Psychological Aspects
Bereaved Parent; Bereavement; Bereavement Program; Cancer; Communication; End Of Life; Grief; Health Care Provider; Palliative Care; Pediatric Oncology
Creator
An entity primarily responsible for making the resource
Snaman J; Kaye EC; Torres C; Gibson DV; Baker J
Description
An account of the resource
BACKGROUND:
Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with patients and families at the end of a child's life and after death profoundly affects parental grief, offering a unique opportunity for the medical community to positively impact the bereavement experience. The current study was conducted to explore the role of the health care team and medical institutions in the grief journeys of parents whose child died a cancer-related death.
METHODS:
Eleven bereaved parents participated in 2 focus groups. Responses to each of the 3 main prompts were coded and analyzed independently using semantic content analysis techniques.
RESULTS:
Four main concepts were identified within the parental narratives, including the importance of strong and ongoing relationships between providers and bereaved families, the importance of high-quality communication, the effect of negative experiences between providers and families on parental grief, and the importance of the institution's role in the grief journeys of bereaved parents.
CONCLUSIONS:
Bereaved parents consistently identified the critical role played by medical staff and medical institutions throughout the grief journey. Key components of bereavement support identified by parents should serve to guide the actions of providers as well as provide a template for the development of a comprehensive bereavement program within an institution.
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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
Analysis
Baker J
Bereaved Parent
Bereavement
Bereavement Program
Cancer
Child
Communication
Death
End Of Life
Gibson DV
Grief
Health Care Provider
Kaye EC
May 2016 List
Palliative Care
Parent And Child
Parents
Pediatric Oncology
Psychological Aspects
Snaman J
Torres C
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
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Title
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Examining The Experiences Of Fathers Of Children With A Life-limiting Illness.
Publisher
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Journal Of Social Work In End-of-life & 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
Bereavement; Caregivers/caregiving; Children/pediatrics; Health Care; Palliative Care
Creator
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Nicholas DB; Beaune L; Barrera M; Blumberg J; Belletrutti M
Description
An account of the resource
Families who have a child diagnosed with a life-limiting illness (LLI) face substantial challenges resulting from the complexity and devastating impact of the condition and potential closeness of death. The experiences of fathers of a child with LLI have been understudied; therefore, this study explored the stresses, experiences, and strategies of these fathers, including their perceptions about support needs. Based on grounded theory, in-depth semi-structured interviews were conducted with 18 fathers of children with LLI. Six fathers had experienced the death of their child. The overarching themes were stresses, means of coping, and perceived needs for support. Generally, fathers in this study struggled relative to discursive and internalized notions of fathers as providers and protectors for their children, combined with an inability to ease their child's vulnerability to LLI. Participants were engaged in the care of their child with LLI, but several felt marginalized by health care providers in care planning and staff/family communication. Some fathers recognized and valued their support network while others had few supports. Some described personal growth and desired to help other fathers. Practice implications and recommendations include renewed application of family-centered care, overcoming presumptions about fathers' roles, and recognizing the impact of LLI beyond physical health.
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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
Barrera M
Beaune L
Belletrutti M
Bereavement
Blumberg J
Caregivers/caregiving
Children/pediatrics
Health Care
Journal of Social Work in End-of-Life & Palliative Care
May 2016 List
Nicholas DB
Palliative Care
-
Text
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Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Ethical Dilemmas In Postnatal Treatment Of Severe Congenital Hydrocephalus.
Publisher
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Cambridge Quarterly Of Healthcare Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Decision Making/ethics; Ethics Medical; Female; Humans; Hydrocephalus/diagnosis; Hydrocephalus/therapy; Infant; Infant Premature; Intensive Care Neonatal/ethics; Male; Medical Futility/ethics; Postnatal Care/ethics; Quality Of Life; Severity Of Illness Index; Ventriculoperitoneal Shunt/ethics; Withholding Treatment/ethics
Children; Hydrocephalus; Medical Ethics; Medical Futility; Neonatal Intensive Care Unit; Withdrawing Treatment
Creator
An entity primarily responsible for making the resource
Wilkinson D
Description
An account of the resource
Severe congenital hydrocephalus manifests as accumulation of a large amount of excess fluid in the brain. It is a paradigmatic example of a condition in which diagnosis is relatively straightforward and long-term survival is usually associated with severe disability. It might be thought that, should parents agree, palliative care and limitation of treatment would be clearly permissible on the basis of the best interests of the infant. However, severe congenital hydrocephalus illustrates some of the neuroethical challenges in pediatrics. The permissibility of withholding or withdrawing treatment is limited by uncertainty in prognosis and the possibility of "palliative harm." Conversely, although there are some situations in which treatment is contrary to the interests of the child, or unreasonable on the grounds of limited resources, acute surgical treatment of hydrocephalus rarely falls into that category.
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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
Cambridge Quarterly of Healthcare Ethics
Children
Decision Making/ethics
Ethics Medical
Female
Humans
Hydrocephalus
Hydrocephalus/diagnosis
Hydrocephalus/therapy
Infant
Infant Premature
Intensive Care Neonatal/ethics
Male
May 2016 List
Medical Ethics
Medical Futility
Medical Futility/ethics
Neonatal Intensive Care Unit
Postnatal Care/ethics
Quality Of Life
Severity Of Illness Index
Ventriculoperitoneal Shunt/ethics
Wilkinson D
Withdrawing Treatment
Withholding Treatment/ethics
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
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Title
A name given to the resource
Elective Ventilation To Facilitate Organ Donation In Infants With Anencephaly: Perinatal Professionals’ Views And An Ethical Analysis.
Publisher
An entity responsible for making the resource available
International Journal Of Paediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Anencephaly/diagnosis; Anencephaly/therapy; Attitude Of Health Personnel; Ethical Analysis; Female; Humans; London; Male; Palliative Care/ethics; Palliative Care/methods; Perinatal Care/ethics; Perinatal Care/methods; Pregnancy; Prenatal-diagnosis; Respiration Artificial/ethics; Tissue And Organ Procurement/ethics
Ethics; Major Congenital Anomaly; Neonates; Organ Donation
Creator
An entity primarily responsible for making the resource
Jivraj A; Scales A; Brierley J
Description
An account of the resource
AIM:
Following the elective ventilation and referral for organ donation of an infant with anencephaly, we sought local perinatal professionals' views of this practice.
METHODS:
Anonymous online survey: demographics, ethical viewpoints and potential public/maternal perceptions (standard 5-part Likert scale and free text).
RESULTS:
DEMOGRAPHICS:
49 replies (38 female): 4 obstetricians, 14 neonatologists, 6 foetal clinicians, 23 nurses, 1 anaesthetist and 1 reproductive specialist.
EXPERIENCE:
0.5-33 years (average 12). Twenty-one had experience of anencephalic delivery, and 10 reported pregnancy continued for religious reasons.
ETHICS:
(i) 73% thought anencephalic donation acceptable, of which 64% supported elective ventilation, 20% neutral and 16% disagreed. (ii) Provision of treatments not in infant's strict best interest to facilitate donation: 22% strongly agreed, 36% agreed, 33% neutral and 9% disagreed. (iii) Accept ventilation to permit donation if societal benefit: 53% agreed, 33% neutral and 13% disagreed. (iv) Public opinion: 59% disagreed anencephalic donation would harm public opinion about donation and 19% agreed.
CONCLUSION:
We found a supportive local environment for donation in the setting of anencephaly, including support for elective ventilation. Given this, and our ethical analysis, we recommend provision of organ donation information as part of palliative care counselling for women carrying a foetus with a condition likely to be fatal in infancy.
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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
Anencephaly/diagnosis
Anencephaly/therapy
Attitude Of Health Personnel
Brierley J
Ethical Analysis
Ethics
Female
Humans
International Journal of Paediatrics
Jivraj A
London
Major Congenital Anomaly
Male
May 2016 List
Neonates
Organ Donation
Palliative Care/ethics
Palliative Care/methods
Perinatal Care/ethics
Perinatal Care/methods
Pregnancy
Prenatal-diagnosis
Respiration Artificial/ethics
Scales A
Tissue And Organ Procurement/ethics
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Death Talk: Basic Linguistic Rules And Communication In Perinatal And Paediatric End-of-life Discussions.
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
2016
Subject
The topic of the resource
Communication; Death; Decision Making; Female; Humans; Linguistics; Male; Parents/psychology; Pediatrics; Perinatal Death; Pregnancy; Professional-family Relations; Terminal Care/methods; Terminally Ill
Consumer Health Information; Decision-making; End-of-life Care; Health Communication
Creator
An entity primarily responsible for making the resource
Xafis V; Watkins A; Wilkinson D
Description
An account of the resource
OBJECTIVE:
This paper considers clinician/parent communication difficulties noted by parents involved in end-of-life decision-making in the light of linguistic theory.
METHODS:
Grice's Cooperative Principle and associated maxims, which enable effective communication, are examined in relation to communication deficiencies that parents have identified when making end-of-life decisions for the child. Examples from the literature are provided to clarify the impact of failing to observe the maxims on parents and on clinician/parent communication.
RESULTS:
Linguistic theory applied to the literature on parental concerns about clinician/parent communication shows that the violation of the maxims of quantity, quality, relation, and manner as well as the stance that some clinicians adopt during discussions with parents impact on clinician/parent communication and lead to distrust, anger, sadness, and long-term difficulties coping with the experience of losing one's child.
CONCLUSION:
Parents have identified communication deficiencies in end-of-life discussions. Relating these communication deficiencies to linguistic theory provides insight into communication difficulties but also solutions.
PRACTICE IMPLICATIONS:
Gaining an understanding of basic linguistic theory that underlies human interactions, gaining insight into the communication deficiencies that parents have identified, and modifying some communication behaviours in light of these with the suggestions made in this article may lead to improved clinician/parent communication.
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
Communication
Consumer Health Information
Death
Decision Making
Decision-making
End-of-life Care
Female
Health Communication
Humans
Linguistics
Male
May 2016 List
Parents/psychology
Patient Education and Counseling
Pediatrics
Perinatal Death
Pregnancy
Professional-family Relations
Terminal Care/methods
Terminally Ill
Watkins A
Wilkinson D
Xafis V
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Cost Analysis And Policy Implications Of A Pediatric Palliative Care Program.
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Palliative Concurrent Care Cost Pediatric Policy
Creator
An entity primarily responsible for making the resource
Gans D; Hadler MW; Chen X; Wu SH; Dimand R; Abramson JM; Ferrell B; Diamant AL; Kominski GF
Description
An account of the resource
CONTEXT:
In 2010, California launched Partners for Children (PFC), a pediatric palliative care pilot program offering hospice-like services for children eligible for full-scope Medicaid delivered concurrently with curative care, regardless of the child's life expectancy.
OBJECTIVES:
We assessed the change from before PFC enrollment to the enrolled period in 1) health care costs per enrollee per month (PEPM), 2) costs by service type and diagnosis category, and 3) health care utilization (days of inpatient care and length of hospital stay).
METHODS:
A pre-post analysis compared enrollees' health care costs and utilization up to 24 months before enrollment with their costs during participation in the pilot, from January 2010 through December 2012. Analyses were conducted using paid Medicaid claims and program enrollment data.
RESULTS:
The average PEPM health care costs of program enrollees decreased by $3331 from before their participation in PFC to the enrolled period, driven by a reduction in inpatient costs of $4897 PEPM. PFC enrollees experienced a nearly 50% reduction in the average number of inpatient days per month, from 4.2 to 2.3. Average length of stay per hospitalization dropped from an average of 16.7 days before enrollment to 6.5 days while in the program.
CONCLUSION:
Through the provision of home-based therapeutic services, 24/7 access to medical advice, and enhanced, personally tailored care coordination, PFC demonstrated an effective way to reduce costs for children with life-limiting conditions by moving from costly inpatient care to more coordinated and less expensive outpatient care. PFC's home-based care strategy is a cost-effective model for pediatric palliative care elsewhere.
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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
Abramson JM
Chen X
Diamant AL
Dimand R
Ferrell B
Gans D
Hadler MW
Journal of Pain and Symptom Management
Kominski GF
May 2016 List
Palliative Concurrent Care Cost Pediatric Policy
Wu SH
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Compassionate Deactivation Of Ventricular Assist Devices In Pediatric Patients.
Publisher
An entity responsible for making the resource available
The Journal Of Heart And Lung Transplantation
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Pediatrics; Expert Consensus Statement; Destination Therapy; End Of Life Care; Respiratory System; Advanced Heart-disease; Implantable Electronic Devices; Mechanical Circulatory Support; Transplantation; Mechanical Support; Cardiac & Cardiovascular Systems; United States; Patients Nearing End; Quality Of Life; Palliative Care; Surgery; Ventricular Assist; Requesting Withdrawal; Sustaining Treatment
Mechanical Support; Palliative Care; Pediatrics; Quality Of Life; Ventricular Assist
Creator
An entity primarily responsible for making the resource
Hollander SA; Axelrod DM; Bernstein D; Cohen H; Sourkes B; Reddy S; Magnus D; Rosenthal DN; Kaufman BD
Description
An account of the resource
Despite greatly improved survival in pediatric patients with end-stage heart failure through the use of ventricular assist devices (VADs), heart failure ultimately remains a life-threatening disease with a significant symptom burden. With increased demand for donor organs, liberalizing the boundaries of case complexity, and the introduction of destination therapy in children, more children can be expected to die while on mechanical support. Despite this trend, guidelines on the ethical and pragmatic issues of compassionate deactivation of VAD support in children are strikingly absent. As VAD support for pediatric patients increases in frequency, the pediatric heart failure and palliative care communities must work toward establishing guidelines to clarify the complex issues surrounding compassionate deactivation. Patient, family and clinician attitudes must be ascertained and education regarding the psychological, legal and ethical issues should be provided. Furthermore, pediatric-specific planning documents for use before VAD implantation as well as deactivation checklists should be developed to assist with decision-making at critical points during the illness trajectory. Herein we review the relevant literature regarding compassionate deactivation with a specific focus on issues related to children.
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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
Advanced Heart-disease
Axelrod DM
Bernstein D
Cardiac & Cardiovascular Systems
Cohen H
Destination Therapy
End Of Life Care
Expert Consensus Statement
Hollander SA
Implantable Electronic Devices
Kaufman BD
Magnus D
May 2016 List
Mechanical Circulatory Support
Mechanical Support
Palliative Care
Patients Nearing End
Pediatrics
Quality Of Life
Reddy S
Requesting Withdrawal
Respiratory System
Rosenthal DN
Sourkes B
Surgery
Sustaining Treatment
The Journal of Heart and Lung Transplantation
Transplantation
United States
Ventricular Assist
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Clusters Of Multiple Complex Chronic Conditions: A Latent Class Analysis Of Children At End Of Life.
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Hospice Care; Pediatrics; Complex Chronic Conditions; Medicare Managed Care; Child; Clinical Neurology; Cancer; Palliative Care; Dependence; Latent Class Analysis; Couples; End Of Life Care; Health Care Sciences & Services Medicine General & Internal
Complex Chronic Conditions; Children; End Of Life; Latent Class Analysis; Pediatrics
Creator
An entity primarily responsible for making the resource
Lindley LC; Mack JW; Bruce DJ
Description
An account of the resource
CONTEXT:
Children at end of life often experience multiple complex chronic conditions with more than 50% of children reportedly having two or more conditions. These complex chronic conditions are unlikely to occur in an entirely uniform manner in children at end of life. Previous work has not fully accounted for patterns of multiple conditions when evaluating care among these children.
OBJECTIVES:
The objective of the study was to understand the clusters of complex chronic conditions present among children in the last year of life.
METHODS:
Participants were 1423 pediatric decedents from the 2007 to 2008 California Medicaid data. A latent class analysis was used to identify clusters of children with multiple complex chronic conditions (neurological, cardiovascular, respiratory, renal, gastrointestinal, hematologic, metabolic, congenital, cancer). Multinomial logistic regression analysis was used to examine the relationship between demographic characteristics and class membership.
RESULTS:
Four latent classes were yielded: medically fragile (31%); neurological (32%); cancer (25%); and cardiovascular (12%). Three classes were characterized by a 100% likelihood of having a complex chronic condition coupled with a low or moderate likelihood of having the other eight conditions. The four classes exhibited unique demographic profiles.
CONCLUSION:
This analysis presented a novel way of understanding patterns of multiple complex chronic conditions among children that may inform tailored and targeted end-of-life care for different clusters.
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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
Bruce DJ
Cancer
Child
Children
Clinical Neurology
Complex Chronic Conditions
Couples
Dependence
End Of Life
End Of Life Care
Health Care Sciences & Services Medicine General & Internal
Hospice Care
Journal of Pain and Symptom Management
Latent Class Analysis
Lindley LC
Mack JW
May 2016 List
Medicare Managed Care
Palliative Care
Pediatrics
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Cause Of Death Of Infants And Children In The Intensive Care Unit: Parents’ Recall Vs Chart Review.
Publisher
An entity responsible for making the resource available
American Journal Of Critical 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
Risk; Information; Family-members; Of-life Care; Communication; Nursing Perspectives; Complicated Grief; Critical Care Medicine
Creator
An entity primarily responsible for making the resource
Brooten D; Youngblut JM; Caicedo C; Seagrave L; Cantwell GP; Totapally B
Description
An account of the resource
BACKGROUND:
More than 55 000 children die annually in the United States, most in neonatal and pediatric intensive care units. Because of the stress and emotional turmoil of the deaths, the children's parents have difficulty comprehending information.
OBJECTIVES:
To compare parents' reports and hospital chart data on cause of death and examine agreement on cause of death according to parents' sex, race, participation in end-of-life decisions, and discussion with physicians; deceased child's age; unit of care (neonatal or pediatric); and hospital and intensive care unit lengths of stay.
METHODS:
A descriptive, correlational design was used with a structured interview of parents 1 month after the death and review of hospital chart data. Parents whose children died in intensive care were recruited from 4 South Florida hospitals and from Florida Department of Health death records.
RESULTS:
Among 230 parents, 54% of mothers and 40% of fathers agreed with the chart cause of death. Agreement did not differ significantly for mothers or fathers by race/ethnicity, participation in end-of-life decisions, discussions with physicians, or mean length of hospital stay. Agreement was better for mothers when the stay in the intensive care unit was the shortest. Fathers' agreement with chart data was best when the deceased was an infant and death was in the pediatric intensive care unit.
CONCLUSIONS:
Death of a child is a time of high stress when parents' concentration, hearing, and information processing are diminished. Many parents have misconceptions about the cause of the death 1 month after the death.
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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
American Journal of Critical Care
Brooten D
Caicedo C
Cantwell GP
Communication
Complicated Grief
Critical Care Medicine
Family-members
Information
May 2016 List
Nursing Perspectives
Of-life Care
Risk
Seagrave L
Totapally B
Youngblut JM
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Assessment Of The Spiritual Needs Of Primary Caregivers Of Children With Life-limiting Illnesses Is Valuable Yet Inconsistently Performed In The Hospital.
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
2016
Subject
The topic of the resource
Quality Of Life; Pediatric Palliative Care; Religion; Cancer-patients; Health Care Sciences & Services Associations
Creator
An entity primarily responsible for making the resource
Kelly JA; May CS; Maurer SH
Description
An account of the resource
BACKGROUND:
Religion and spirituality influence how many patients and families experience illness, but knowledge of the level of spiritual care provided to caregivers of pediatric patients within the hospital is limited.
OBJECTIVE:
We evaluated patient caregivers' perceptions of the extent to which their religious and spiritual (R/S) needs were assessed and addressed in the hospital.
METHODS:
We surveyed primary caregivers of children referred to palliative care <1 year prior at an urban, pediatric academic medical center. Participants completed a structured questionnaire with quantitative and qualitative measures of the provision of spiritual care in the hospital. Nonparametric tests were used to compare various measures of perceived and desired R/S support.
RESULTS:
The majority (16/24) of caregivers desired inquiry about R/S needs by the medical team. Fewer than half (12/25) had these needs assessed. No subjects were uncomfortable with questions regarding R/S needs. Only 35% (8/23) specifically wanted a physician to inquire about R/S needs. Subjects whose R/S needs were assessed perceived higher levels of support from the medical team (4.40 versus 3.08, p = 0.02). A significant correlation existed between number of hospital-based R/S resources used and reported R/S-related comfort (rs = 0.438, p = 0.043).
CONCLUSIONS:
Assessment of R/S needs of caregivers of pediatric palliative care patients is performed less often than desired, even though it can improve perceptions of support from medical teams. Use of hospital-based R/S resources can increase spiritual comfort. Standardizing assessment of caregivers' R/S needs and referral to appropriate resources is a target for quality improvement in pediatric palliative medicine.
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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
Cancer-patients
Health Care Sciences & Services Associations
Journal of Palliative Medicine
Kelly JA
Maurer SH
May 2016 List
May CS
Pediatric Palliative Care
Quality Of Life
Religion
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Assessing The Presence And Severity Of Constipation With Plain Radiographs In Constipated Palliative Care Patients.
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
2016
Subject
The topic of the resource
Palliative And Supportive Care; Constipation; Australia; Gastroenterology
Creator
An entity primarily responsible for making the resource
Clark K; Lam LT; Talley NJ; Quinn J; Blight A; Byfieldt N; Currow DC
Description
An account of the resource
BACKGROUND:
Palliative care guidelines recommend plain radiographs to assess constipation based on the presumption that visible fecal shadowing represents stool retention. Despite this, using plain radiographs in this way is not well validated.
OBJECTIVES:
This work's main aim was to compare clinicians' reports of fecal loading on radiographs. This study also compares clinicians' assessments with radio-opaque marker transit studies and patients' self-reported constipation symptoms.
METHODS:
This study was conducted in a sample of 30 constipated palliative care patients taking laxatives who had all undergone colon transit studies and contemporaneous assessment of constipation symptoms with the Patient Assessment of Constipation Symptom (PAC-SYM) questionnaire. Four separate clinicians independently reported their opinions of fecal loading using a previously developed fecal loading scale. Participant details were summarized and pair-wise inter-rater agreement among all four raters were examined using the Bland-Altman approach. For the comparisons of the clinician-assigned fecal loading score between the radiographic assessment of the normal and slow colon transit time, the nonparametric approach of Mann-Whitney U tests were applied. Spearman's correlation analyses were employed to investigate the association between the clinician-assigned fecal loading score and the patient self-reported PAC-SYM score.
RESULTS:
The results of this study are very similar to other studies conducted in functional constipation, highlighting systematic disagreement between observers. Further poor correlations were noted between fecal loading scores and colon transit times and with patient self-reported symptoms.
CONCLUSION:
These results, when considered with other work in chronic constipation, question the ongoing use of radiographs in the diagnosis of constipation.
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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
Australia
Blight A
Byfieldt N
Clark K
Constipation
Currow DC
Gastroenterology
Journal of Palliative Medicine
Lam LT
May 2016 List
Palliative And Supportive Care
Quinn J
Talley NJ
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Acknowledged Dependence And The Virtues Of Perinatal Hospice
Publisher
An entity responsible for making the resource available
Journal Of Medicine & Philosophy
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Hospices (terminal Care); Social Aspects; Prenatal Care; Palliative Treatment
Acknowledged Dependence; Alasdair Macintyre; Life-limiting Conditions; Palliative Care; Perinatal Hospice; Prenatal Screening
Creator
An entity primarily responsible for making the resource
Aaron D Cobb
Description
An account of the resource
Prenatal screening can lead to the detection and diagnosis of significantly life-limiting conditions affecting the unborn child. Recognizing the difficulties facing parents who decide to continue the pregnancy, some have proposed perinatal hospice as a new modality of care. Although the medical literature has begun to devote significant attention to these practices, systematic philosophical reflection on perinatal hospice has been relatively limited. Drawing on Alasdair MacIntyre’s account of the virtues of acknowledged dependence, I contend that perinatal hospice manifests and facilitates virtues essential to living well with human dependency and vulnerability. For this reason, perinatal hospice deserves broad support within society.
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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
Aaron D Cobb
Acknowledged Dependence
Alasdair Macintyre
Hospices (terminal Care)
Journal of Medicine & Philosophy
Life-limiting Conditions
May 2016 List
Palliative Care
Palliative Treatment
Perinatal Hospice
Prenatal Care
Prenatal Screening
Social Aspects
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
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Title
A name given to the resource
A Systematic Review Of Reasons For Gatekeeping In Palliative Care Research.
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Gatekeeping; Ethics; Palliative Care; Patient Selection; Refusal To Participate
Creator
An entity primarily responsible for making the resource
Kars MC; van Thiel GJ; van der Graaf R; Moors M; de Graeff A; van Delden JJ
Description
An account of the resource
BACKGROUND:
When healthcare professionals or other involved parties prevent eligible patients from entering a trial as a research subject, they are gatekeeping. This phenomenon is a persistent problem in palliative care research and thought to be responsible for the failure of many studies.
AIM:
To identify potential gatekeepers and explore their reasons for gatekeeping in palliative care research.
DESIGN:
A 'Review of Reasons' based on the systematic Preferred Reporting Items for Systematic Reviews and Meta-Analyses approach and a thematic synthesis.
DATA SOURCE:
PubMed, Embase, Cumulative Index to Nursing and Allied Health Literature and PsycINFO from 2000 to May 20 2015 were searched. Studies in children (aged <18 years) and patients with dementia were excluded.
RESULTS:
Thirty papers on gatekeeping in palliative care research were included. Five groups of potential gatekeepers were identified: healthcare professionals, research ethics committees, management, relatives and researchers. The fear of burdening vulnerable patients was the most reported reason for gatekeeping. Other reasons included 'difficulty with disclosure of health status', 'fear of burdening the patient's relatives', 'doubts about the importance or quality of the study', 'reticent attitude towards research and (research) expertise' and 'logistics'. In hospice and homecare settings, the pursuit of comfort care may trigger a protective attitude. Gatekeeping is also rooted in a (perceived) lack of skills to recruit patients with advanced illness.
CONCLUSION:
Gatekeeping is motivated by the general assumption of vulnerability of patients, coupled with an emphasis on the duty to protect patients. Research is easily perceived as a threat to patient well-being, and the benefits appear to be overlooked. The patients' perspective concerning study participation is needed to gain a full understanding and to address gatekeeping in palliative care research.
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
de Graeff A
Ethics
Gatekeeping
Kars MC
May 2016 List
Moors M
Palliative Care
Palliative Medicine
Patient Selection
Refusal To Participate
van Delden JJ
van der Graaf R
van Thiel GJ
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
“the Nice Thing About Doctors Is That You Can Sometimes Get A Day Off School”: An Action Research Study To Bring Lived Experiences From Children, Parents And Hospice Staff Into Medical Students’ Preparation For Practice.
Publisher
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Bmj Supportive & 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
Adolescent; Child; Clinical Competence/standards; Education Medical/standards; Female; Focus Groups; Health Services Research; Hospice Care/standards; Humans; Male; Pediatrics/education; Pediatrics/standards; Physician-patient Relations
Education And Training; Hospice Care; Pediatrics; Palliative Care; Qualitative Research
Creator
An entity primarily responsible for making the resource
Spalding J; Yardley S
Description
An account of the resource
Abstract
Patient and public involvement in healthcare is important to ensure services meet their needs and priorities. Increasingly, patient experiences are being used to educate healthcare professionals. The potential contribution to medical education of children and parents using hospice services has not yet been fully explored.
OBJECTIVES:
(1) To explore perceptions of what medical students must learn to become 'good doctors' among children, parents and staff in a hospice. (2) To collaborate with children/parents and staff to develop educational materials based on their lived experiences for medical students. (3) To assess feasibility of student-led action research in a children's hospice to develop research skills.
METHODS:
Prospective ethical approval received. Volunteer children (n=7), parents (n=5) and staff (n=6) were recruited from a children's hospice. Data were generated in audio-recorded semistructured focus groups, individual interviews and/or activity workshops. Participants discussed what newly qualified doctors' needed to care for children with life-limiting conditions. Audio data were transcribed and combined with visual data for thematic analysis. Findings were refined by participant feedback. This paper presents thematic findings and educational material created from the project.
RESULTS:
Thematic analysis identified six learning themes: (1) treat children as individuals; (2) act as a person before being a doctor; (3) interpersonal communication; (4) appreciate the clinical environment; (5) learn from children, parents and other staff; (6) how to be a doctor as part of a team. The student researcher successfully developed qualitative research skills, coproducing materials with participants for sharing learning derived from lived experiences.
CONCLUSIONS:
All participants were willing and able to make valuable contributions, and believed that this was a worthwhile use of time and effort. Further work is required to understand how best to integrate the experiences of children in hospices into medical education.
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
Adolescent
BMJ Supportive & Palliative Care
Child
Clinical Competence/standards
Education And Training
Education Medical/standards
Female
Focus Groups
Health Services Research
Hospice Care
Hospice Care/standards
Humans
Male
May 2016 List
Palliative Care
Pediatrics
Pediatrics/education
Pediatrics/standards
Physician-patient Relations
Qualitative Research
Spalding J
Yardley 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
May 2016 List
URL Address
<a href="https://www.em-consulte.com/article/1041349/alertePM">10.1016/j.spp.2016.01.010</a>
Dublin Core
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Title
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[from One Passing To Another, Analogies Between Birth And Death].
Publisher
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Soins Pédiatrie/puériculture
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/psychology
Creator
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Friedel-Castorini M
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).
Identifier
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<a href="https://www.em-consulte.com/article/1041349/alertePM">10.1016/j.spp.2016.01.010</a>
Description
An account of the resource
Abstract
There are disturbing analogies between the beginning and the end of the life of a child. The hypothesis of a similarity between the birth and the dying process of the child gives rise to discussion around the support provided in the context of paediatric palliative care.
2016
Friedel-Castorini M
May 2016 List
Parents/psychology
Soins Pédiatrie/Puériculture
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
URL Address
<a href="https://www.sciencedirect.com/science/article/pii/S0929693X16301518?via%3Dihub">10.1016/j.arcped.2016.03.053</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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[comparison Of Palliative Care Representations Between Pediatrician Residents And Oncologist Residents: A Qualitative Study].
Publisher
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Archives De Pediatrie
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Pediatrics; Knowledge
Creator
An entity primarily responsible for making the resource
Toulouse J; Leneveu MC; Brouard J; Alexandre M
Description
An account of the resource
BACKGROUND:
Pediatrics residents treat patients who are particularly vulnerable and they care for many patients in palliative situations. The purpose of this study was to build a typology detailing the representations of pediatrics and oncology residents on palliative care and how these transfer to their practice, and to determine their knowledge of euthanasia and end-of-life legislation.
METHODS:
To draw up this typology, we used a semidirective interview method. The topics treated were their definition of palliative care, end of life, the emotions involved in these situations, and their daily practice. Then we asked them to speak about their opinions and knowledge of euthanasia and end-of-life legislation.
RESULTS:
Thirteen residents were interviewed: eight pediatrics residents, two oncologists, and three hemato-oncologists. Interviews lasted around 45min. Pediatrics and oncology residents had common representations based on "care giving." Nevertheless, pediatrics residents remained within the technical aspects to protect themselves from their negative emotions and stayed away from their patients. Oncology residents set their emotions aside to be able to carry on taking care of their patients.
CONCLUSION:
It seems necessary to disseminate a palliative culture, particularly in pediatrics, to improve management of children in palliative situations and to improve resident's feelings.
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).
Identifier
An unambiguous reference to the resource within a given context
<a href="https://www.sciencedirect.com/science/article/pii/S0929693X16301518?via%3Dihub">10.1016/j.arcped.2016.03.053</a>
2016
Alexandre M
Archives de Pediatrie
Brouard J
Knowledge
Leneveu MC
May 2016 List
Pediatrics
Toulouse J