1
40
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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August 2021 List
Text
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Citation List Month
August 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-014423" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-014423</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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The Physical Health of Caregivers of Children With Life-Limiting Conditions: A Systematic Review
Publisher
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Pediatrics
Date
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2021
Subject
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caregiver; children; life-limiting condition; parents; physical health
Creator
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Hartley J; Bluebond-Langner M; Candy B; Downie J; Henderson EM
Description
An account of the resource
CONTEXT: Parental caregiving for a child with a life-limiting condition (LLC) is complex physical and mental work. The impact of this caregiving on parents' physical health is unknown. OBJECTIVES: (1) To review existing evidence on the physical health of parents caring for a child with a LLC and (2) to determine how physical health of parents is measured. DATA SOURCES: Medline, Embase, PsycINFO, and Cumulative Index of Nursing and Allied Health Literature were searched. STUDY SELECTION: Peer-reviewed articles were included if they reported primary data on the physical health of a caregiver of a child with a LLC. Studies were excluded if they described only the caregiver's mental health or if the caregivers were bereaved at the time of data collection. DATA EXTRACTION: Of 69 335 unique citations, 81 studies were included in the review. RESULTS: Caregiver health was negatively impacted in 84% of studies. Pain and sleep disturbance were the most common problems. Ways of measuring the physical health of caregiver varied widely. We found an absence of in-depth explorations of the social and economic contexts, which could potentially mitigate the impact of caregiving. Furthermore, we find health interventions tailored to this group remain largely unexplored. LIMITATIONS: Studies were heterogenous in methodology, making comparisons of results across studies difficult. CONCLUSIONS: These findings support the need for improving access to interventions aimed at improving physical health in this population. The rate of health-seeking behaviors, preventive health care access and screening for health conditions is understudied and represent important directions for further research.
Identifier
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<a href="http://doi.org/10.1542/peds.2020-014423" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-014423</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
August 2021 List
Bluebond-Langner M
Candy B
Caregiver
Children
Downie J
Hartley J
Henderson EM
Life-limiting Condition
Parents
Pediatrics
physical health
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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July 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2021 List
URL Address
<a href="http://doi.org/10.1007/s00467-021-05056-1" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00467-021-05056-1</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Palliative care for children and young people with stage 5 chronic kidney disease
Publisher
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Pediatric Nephrology.
Date
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2021
Subject
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advance care planning; conservative management; kidney failure; palliative care; Stage 5 chronic kidney disease (CKD 5); symptom management
Creator
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Craig F; Henderson EM; Patel B; Murtagh FEM; Bluebond-Langner M
Description
An account of the resource
Death from stage 5 chronic kidney disease (CKD 5) in childhood or adolescence is rare, but something that all paediatric renal physicians and most paediatricians will encounter. In this paper, we present the literature on three key areas of palliative care practice essential to good clinical management: shared decision-making, advance care planning, and symptom management, with particular reference to CKD 5 where kidney transplant is not an option and where a decision has been made to withdraw or withhold dialysis. Some areas of care, particularly with regard to symptom management, have not been well-studied in children and young people (CYP) with CKD 5 and recommendations with regard to drug choice and dose modification are based on adult literature, known pharmacokinetics, and clinical experience. Copyright © 2021, Crown.
Identifier
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<a href="http://doi.org/10.1007/s00467-021-05056-1" target="_blank" rel="noreferrer noopener">10.1007/s00467-021-05056-1</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Advance Care Planning
Bluebond-Langner M
conservative management
Craig F
Henderson EM
July 2021 List
Kidney Failure
Murtagh FEM
Palliative Care
Patel B
Pediatric Nephrology.
Stage 5 chronic kidney disease (CKD 5)
Symptom Management
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2017 List
URL Address
<a href="http://dx.doi.org/10.1136/archdischild-2015-310345">http://dx.doi.org/10.1136/archdischild-2015-310345</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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'I Have to Live with the Decisions I Make': Laying a Foundation for Decision Making for Children with Life-limiting Conditions and Life-Threatening Illnesses
Publisher
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Archives Of Disease In Childhood
Date
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2016
Subject
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Communication; Cystic Fibrosis; Decision-making; Oncology; Qualitative Research
Creator
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Bluebond-Langner M; Hargrave D; Henderson EM; Langner R
Description
An account of the resource
The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this article we lay out factors that bear on the success of clinical consultations and the maintenance of the essential clinician-parent relationship at progression or deterioration of LLCs or LTIs. We suggest an approach to engaging parents in conversations about care and treatment that recognises and appreciates the dilemmas which clinicians and parents face and in so doing provides a way for everyone to live with the decisions that are made. A close analysis of a consultation at progression and excerpts of encounters among parents, clinician and researcher are used to illustrate our approach to research, analysis and development of recommendations for clinical practice.
Identifier
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<a href="http://dx.doi.org/10.1136/archdischild-2015-310345">10.1136/archdischild-2015-310345</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Archives of Disease in Childhood
Bluebond-Langner M
Communication
Cystic Fibrosis
Decision Making
February 2017 List
Hargrave D
Henderson EM
Langner R
Oncology
Qualitative Research