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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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March 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2020 List
URL Address
<a href="http://doi.org/10.1177/0269216319900317" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319900317</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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Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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adolescent; advance care planning; article; awareness; child; content analysis; decision making; documentation; emergency health service; female; health care personnel; human; human experiment; living will; male; Palliative therapy; pediatrics; practice guideline; qualitative research; trust
Creator
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Hein K; Knochel K; Zaimovic V; Reimann D; Monz A; Heitkamp N; Borasio G D; Fuhrer M
Description
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BACKGROUND: Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning. AIM: The study aimed at identifying key components of paediatric advance care planning through direct discussions with all involved parties. DESIGN: The study had a qualitative design with a participatory approach. Participants constituted an advisory board and took part in two transdisciplinary workshops. Data were collected in discussion and dialogue groups and analysed using content analysis. SETTING/PARTICIPANTS: We included bereaved parents, health care providers and stakeholders of care networks.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216319900317" target="_blank" rel="noreferrer noopener">10.1177/0269216319900317</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adolescent
Advance Care Planning
Article
Awareness
Borasio G D
Child
Content Analysis
Decision Making
Documentation
Emergency Health Service
Female
Fuhrer M
Health Care Personnel
Hein K
Heitkamp N
Human
Human Experiment
Knochel K
living will
Male
March 2020 List
Monz A
Palliative Medicine
Palliative Therapy
Pediatrics
Practice Guideline
Qualitative Research
Reimann D
Trust
Zaimovic V
-
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
October 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2019 List
URL Address
<a href="http://doi.org/10.1177/0269216319870673" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319870673</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Visualizing social support in home pediatric palliative care using network maps
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
pediatrics; parents; Palliative care; family; network maps; psychosocial support systems
Creator
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Lindemann D; Borasio G D; Fuhrer M; Wasner M
Description
An account of the resource
BACKGROUND: Home care of children with life-limiting diseases is extremely challenging for parents/family caregivers and their social environment. In order to gain new insights into the perspective of family caregivers, we employed digital Network Maps for the first time in the field of pediatric palliative care. AIM: To examine whether the use of Network Maps helps to identify and visualize significant members of the social support system and the quality of the relationship, as well as the main areas of life that are experienced as being supportive by each individual. DESIGN: The design was an integrated mixed methods study. Creation of Network Maps was assessed in conjunction with qualitative interviews. In addition, participants gave an oral feedback on the Network Maps themselves. SETTING/PARTICIPANTS: Parents of patients supported by a Specialized Home Pediatric Palliative Care team were eligible for inclusion. Forty-five parents were enrolled in the study. RESULTS: All mothers and fathers were able to generate their individual Network Map without problems. The composition of the support systems differed greatly, even between members of the same family. Parents named on average 11 supporting actors, mainly family members and health care professionals. Some relationships were perceived as helpful and stressful at the same time. CONCLUSION: Network Maps appear to be an appropriate tool for the collection, reconstruction, and assessment of the current support situation of parents of dying children. Further studies should examine the usefulness of Network Maps for the understanding of the caregivers' support needs and for the development of psychosocial interventional strategies by pediatric palliative care teams.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216319870673" target="_blank" rel="noreferrer noopener">10.1177/0269216319870673</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).
2019
Borasio G D
Family
Fuhrer M
Lindemann D
network maps
October 2019 List
Palliative Care
Palliative Medicine
Parents
Pediatrics
Psychosocial Support Systems
Wasner M