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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/.
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January 2020 List
Text
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January 2020 List
URL Address
<a href="http://doi.org/10.1177/0269216319885818" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319885818</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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Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study
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Palliative Medicine
Date
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2019
Subject
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caregiver; family; Palliative care; parents; patient-centered outcomes research; pediatric; qualitative research
Creator
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Ribbers S; Wager J; Hartenstein-Pinter A; Zernikow B; Reuther M
Description
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BACKGROUND: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about relevant outcome domains for children with severe neurological impairment and their families. AIM: The aim of this study was to identify meaningful outcome domains of pediatric palliative care for children with severe neurological impairment and their families. DESIGN: A qualitative research design following a constructivist research paradigm was employed. Guided interviews were conducted with parents of children with life-limiting conditions and severe neurological impairment and professional caregivers. The data were analyzed using qualitative content analysis. SETTING: Overall, 10 cooperating pediatric palliative care institutions across Germany (outpatient and inpatient settings) aided in the recruitment of eligible parents and professional caregivers. A total of 11 interviews with 14 parents and 17 interviews with 20 professional caregivers were conducted. RESULTS: Six core outcome domains of pediatric palliative care for children with severe neurological impairment and their families were identified, namely (1) symptom control, (2) respite and support, (3) normalcy, (4) security, (5) empowerment, and (6) coping with the disease, each consisting of 1 to 13 individual aspects. CONCLUSION: As for other diagnostic groups, symptom control is a relevant outcome domain for children with severe neurological impairment. However, other outcome domains which focus on the whole family and take into account the long disease trajectory, such as respite and support, security, empowerment, and coping with the disease, are also crucial.
Identifier
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<a href="http://doi.org/10.1177/0269216319885818" target="_blank" rel="noreferrer noopener">10.1177/0269216319885818</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Caregiver
Family
Hartenstein-Pinter A
January 2020 List
Palliative Care
Palliative Medicine
Parents
patient-centered outcomes research
Pediatric
Qualitative Research
Reuther M
Ribbers S
Wager J
Zernikow 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
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December 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
December 2019 List
URL Address
<a href="http://doi.org/10.1177/0269216319883981" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319883981</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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Addressing multidrug resistant pathogens in pediatric palliative care patients-the nurses point of view: A qualitative study
Publisher
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Palliative Medicine
Date
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2019
Subject
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hygiene; multidrug resistance; nurses; Palliative care; pediatrics
Creator
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Schmidt P; Hartenstein-Pinter A; Wager J; Hasan C; Zernikow B
Description
An account of the resource
BACKGROUND: Multidrug resistant pathogens are a large-scale healthcare issue. In particular, children with life-limiting conditions have a significantly increased risk of multidrug resistant pathogen colonization. Official hygiene requirements recommend children, who are colonized with multidrug resistant pathogens, to be isolated. In the context of pediatric palliative care, such isolation adversely affects the aim of social participation. To overcome this challenge of conflicting interests on a pediatric palliative care inpatient unit, a hygiene concept for patients colonized with multidrug resistant pathogens, called PALLINI, was implemented. AIM: The aim of this study was to identify the nurses' attitudes and opinions toward PALLINI. METHODS: Nurses (N = 14) from the pediatric palliative care unit were queried in guideline-oriented interviews. Interviews were analyzed qualitatively by means of content analysis. RESULTS: The following four categories were identified: (1) safety, (2) effort, (3) quality of care, and (4) participation. All categories demonstrated ambivalence by nursing staff regarding PALLINI. Ambivalence arose from guaranteeing infection control versus noncompliance by the families, additional workload for patients with multidrug resistant pathogens versus lack of resources, impaired relationship with the parents versus enabling better care for the child, as well as enabling some limited contact versus the larger goal of genuine social participation. Despite this, nurses reported the importance of arranging everyday-life for the patients so that they experience as much social participation as possible. CONCLUSION: The implementation of a new hygiene concept is challenging. Despite positive reception of PALLINI from the nurses, ambivalence remained. Addressing these ambivalences may be critical to best implement the new hygiene concept.
Identifier
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<a href="http://doi.org/10.1177/0269216319883981" target="_blank" rel="noreferrer noopener">10.1177/0269216319883981</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
December 2019 List
Hartenstein-Pinter A
Hasan C
hygiene
multidrug resistance
Nurses
Palliative Care
Palliative Medicine
Pediatrics
Schmidt P
Wager J
Zernikow B