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40
6
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Dublin Core
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Title
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2019 Oncology List
Text
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Citation List Month
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1177/0269216318818022" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216318818022</a>
Dublin Core
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Title
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Specialized pediatric palliative care services for children dying from cancer: A repeated cohort study on the developments of symptom management and quality of care over a 10-year period
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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cancer; Palliative care; palliative medicine; pediatrics; quality of health care; symptom assessment
Creator
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Zernikow B; Szybalski K; Hubner-Mohler B; Wager J; Paulussen M; Lassay L; Jorch N; Weber C; Schneider D T; Janssen G; Oommen P T; Kuhlen M; Brune T; Wieland R; Schundeln M; Kremens B; Langler A; Prokop A; Kiener R; Niehues T; Rose M; Baumann-Kohler M; Poppelmann M; Thorer H; Irnich M; Sinha K; Wolfe J; Schmidt P
Description
An account of the resource
BACKGROUND:: About one quarter of children affected with cancer die. For children and their families, the end-of-life period is highly distressing. AIM:: This study focused on how end-of-life care in pediatric cancer patients changed over a period of 10 years and if changes in pediatric palliative care structures were associated with quality of care. DESIGN:: Over a 10-year period, all pediatric oncology departments in one German federal state were invited to participate in a repeated cross-sectional cohort study at three time-points (2005, 2010, 2015). Departments invited parents whose children died due to cancer 5 years earlier to participate. Identical semi-structured interviews were conducted with each cohort by the Survey of Caring for Children with Cancer. In addition, departments provided information on their pediatric palliative care infrastructure. PARTICIPANTS:: In total, 124 families participated; 73% of interviews were conducted with mothers, 18% with fathers, and 9% with both parents. RESULTS:: Parents' perception of symptom occurrence, symptom burden, and effectiveness of symptom-related treatment remained stable over the 10-year period. Over time, the availability of pediatric palliative care ( p < 0.001) as well as quality and satisfaction ratings of care ( p < 0.001) increased significantly. A growing number of children received specialized pediatric palliative care at home during the end-of-life period ( p = 0.009). Along with this development, more families had the chance to plan the location of death ( p = 0.003), and more children died at the preferred location ( p = 0.001). CONCLUSION:: Advances in the availability of pediatric palliative care were associated with improvement in some aspects of quality of care (e.g. location of death) while other aspects, such as effectiveness of symptom management, remained unchanged. Further research is required to determine whether additional improvement in structural quality may increase the effectiveness of symptom management.
Identifier
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<a href="http://doi.org/10.1177/0269216318818022" target="_blank" rel="noreferrer noopener">10.1177/0269216318818022</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).
2018
Baumann-Kohler M
Brune T
Cancer
Hubner-Mohler B
Irnich M
Janßen G
Jorch N
Kiener R
Kremens B
Kuhlen M
Langler A
Lassay L
Niehues T
Oncology 2019 List
Oommen P T
Palliative Care
Palliative Medicine
Paulussen M
Pediatrics
Poppelmann M
Prokop A
Quality Of Health Care
Rose M
Schmidt P
Schneider D T
Schundeln M
Sinha K
Symptom Assessment
Szybalski K
Thorer H
Wager J
Weber C
Wieland R
Wolfe 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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January 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
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>
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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
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
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
An account of the resource
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
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216319885818" target="_blank" rel="noreferrer noopener">10.1177/0269216319885818</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
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
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Title
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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1016/j.sleep.2013.09.019" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.sleep.2013.09.019</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 development and psychometric assessment of a questionnaire to assess sleep and daily troubles in parents of children and young adults with severe psychomotor impairment
Publisher
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Sleep Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
caregivers; Validity; Screening; disability; behavior; Neurosciences & Neurology; disturbances; cerebral-palsy; test-retest reliability; instrument; validation; Children with severe psychomotor; HOST; impairment; maternal sleep; Parents' impairment; Parents' questionnaire; quality index; Sleep disturbances; sleep disturbance/disorders; unclear Q3 conditions; Q3 conditions; trajectory; characteristics; tool development; scale development
Creator
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Tietze A L; Zernikow B; Otto M; Hirschfeld G; Michel E; Koh M; Blankenburg M
Description
An account of the resource
Background: Children with severe psychomotor impairment (SPMI) often experience sleep disturbances that severely distress both the child and his or her parents. Validated questionnaires for the assessment of parents' distress related to their child's sleep disturbances are lacking. Methods: We developed and validated a new questionnaire, the HOST (holistic assessment of sleep and daily troubles in parents of children with SPMI) to assess the effect of the sleep disturbances in children with SPMI on their parents. The questionnaire was developed based on published data and expert opinion, and it was refined via direct consultation with affected parents. Its psychometric characteristics were assessed in a sample of parents of 214 children with SPMI. It was retested using a random subsample of the participants. Results: Explorative factor analysis revealed that the HOST was composed of four scales. Fit indices, item analysis, and convergent validity (coherence with preexisting instruments of sleep disturbances and health status) were adequate. Retest analysis (n = 62) revealed high stability of the HOST questionnaire and adequate replication validity. Conclusion: Sleep-related difficulties significantly impact the sociomedical characteristics of the parents of children with complex neurologic diseases. Typically, parents are severely affected in various aspects of daily life (i.e., medical health, social life, professional life). The HOST proved to be a valid, reliable and economical assessment tool of sleep-related difficulties in parents and relatives of children with SPMI. The HOST is capable of identifying individuals and specific areas requiring intervention. (C) 2013 Elsevier B.V. All rights reserved.
Identifier
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<a href="http://doi.org/10.1016/j.sleep.2013.09.019" target="_blank" rel="noreferrer noopener">10.1016/j.sleep.2013.09.019</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).
2014
Behavior
Blankenburg M
Caregivers
cerebral-palsy
characteristics
Children with severe psychomotor
Disability
disturbances
Hirschfeld G
HOST
impairment
instrument
Koh M
maternal sleep
Michel E
Neurosciences & Neurology
Otto M
Parents' impairment
Parents' questionnaire
Q3 conditions
quality index
scale development
Screening
sleep disturbance/disorders
Sleep disturbances
Sleep Medicine
test-retest reliability
Tietze A L
tool development
Trajectory
unclear Q3 conditions
VALIDATION
Validity
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
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1089/jpm.2017.0240" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2017.0240</a>
Dublin Core
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Title
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Dyspnea in Children with Life-Threatening and Life-Limiting Complex Chronic Conditions
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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children; Adolescents; palliative care; complex chronic conditions; adolescents; pediatrics; dyspnea; breathing difficulties; complex chronic conditions; pharmacological interventions; physical interventions
Creator
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Pieper L; Zernikow B; Drake R; Frosch M; Printz M; Wager J
Description
An account of the resource
BACKGROUND: Dyspnea is one of the most frequent symptoms in children with complex chronic conditions (CCC) requiring palliative care. Although it is a subject of high importance, there has been little research on dyspnea in critically ill children. OBJECTIVE: The purpose of this systematic review was to investigate the prevalence and causes of dyspnea in children with CCC and to identify the current state of research on the measurements, treatments, and the evaluation of therapeutic interventions. METHODS: A systematic literature search for relevant literature from 1990 until the present was performed using the online database PubMed. Information about prevalence, pathophysiological mechanisms, measurement, and treatment of dyspnea was extracted from all 43 eligible publications. RESULTS: The prevalence ranged widely from 17% to 80%. Breathlessness was primarily attributed to a disease-specific pathophysiology. A multidimensional approach has not been reported. Assessment of dyspnea included eight tools using either subjective self- or proxy-ratings or objective measures. Evidence for the effectiveness of various treatment approaches was low. DISCUSSION: The prevalence rates for dyspnea could be generalized across all conditions and patient subgroups. The biopsychosocial-spiritual approach was not addressed by the studies. There is a lack of an adequate and validated measurement tool that can be applied to children of various ages and diagnoses, communication ability, and practicable across different settings. Most found treatment approaches lacked good evidence in children. CONCLUSION: Although the prevalence rate of dyspnea in pediatric palliative care is high, it has been poorly studied.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2017.0240" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0240</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).
2018
Adolescents
breathing difficulties
Children
Complex Chronic Conditions
Drake R
Dyspnea
Frosch M
Journal of Palliative Medicine
Palliative Care
Pediatrics
pharmacological interventions
physical interventions
Pieper L
Printz M
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
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1016/j.sleep.2012.12.008" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.sleep.2012.12.008</a>
Dublin Core
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Title
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Snake: the development and validation of a questionnaire on sleep disturbances in children with severe psychomotor impairment
Publisher
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Sleep Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Validity; Screening; Neurosciences & Neurology; psychometric properties; behaviors; scale; disabilities; Children with severe psychomotor impairment; Daytime restlessness; instrument; Parent questionnaire; school-aged children; Sleep disturbance/disorders; sleep disturbance; Q3 conditions; tool development; scale development; SNAKE
Creator
An entity primarily responsible for making the resource
Blankenburg M; Tietze A L; Hechler T; Hirschfeld G; Michel E; Koh M; Zernikow B
Description
An account of the resource
Objective: Sleep disturbance and daytime restlessness are present in 50% to 80% of children with severe psychomotor impairment due to neurologic or other complex diseases. Although these issues severely impair the quality of life of the children and their families, they are not well addressed or managed by professionals. The lack of validated assessment tools prevents further research and the development of adequate therapies. Our aim is to develop and validate a sleep questionnaire for these children that could be used both for clinical management and systematic research. Methods: The sleep questionnaire for children with severe psychomotor impairment (Schlaffragebogen fur Kinder mit Neurologischen und Anderen Komplexen Erkrankungen, SNAKE) is based on expert opinion and consultation with parents. The psychometric quality of the questionnaire was assessed in a sample of 224 children with severe psychomotor impairment. Results: Confirmative factor analysis showed that SNAKE comprises of five factors (based on ICSD-2). Fit indices, analysis of item characteristics and convergent validity (coherence with measures of sleep [i.e., sleep efficiency]) and correlation with selected subscales of the Sleep Disturbance Scale for Children (SDSC) were good. Re-test analysis (n = 62) depicted high stability and good replication of validity. Conclusions: SNAKE is a reliable and valid tool for the diagnosis of sleep disturbances in children with severe psychomotor impairment. The SNAKE questionnaire is the first tool that addresses the specific relationship between sleep disturbance and severe disability in children. (c) 2013 Elsevier B.V. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.sleep.2012.12.008" target="_blank" rel="noreferrer noopener">10.1016/j.sleep.2012.12.008</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).
2013
behaviors
Blankenburg M
Children with severe psychomotor impairment
Daytime restlessness
Disabilities
Hechler T
Hirschfeld G
instrument
Koh M
Michel E
Neurosciences & Neurology
Parent questionnaire
psychometric properties
Q3 conditions
Scale
scale development
school-aged children
Screening
sleep disturbance
sleep disturbance/disorders
Sleep Medicine
SNAKE
Tietze A L
tool development
Validity
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
A name given to the resource
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
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
hygiene; multidrug resistance; nurses; Palliative care; pediatrics
Creator
An entity primarily responsible for making the resource
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
An unambiguous reference to the resource within a given context
<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