1
40
501
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Title
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2023 Special Edition 1 - Parent Perspectives 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
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1352/1934-9556-52.2.112" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1352/1934-9556-52.2.112</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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Family experience in a regional participant contact registry for research on intellectual disability
Publisher
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Intellectual and Developmental Disabilities
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
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Conners FA; Phillips BA; Rhodes JD; Hamilton JC
Description
An account of the resource
Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather than recruiting through multiple schools or service agencies. The authors describe the development of one such registry and results of a survey of registry families. Results suggest that families joined the registry to help others, they hope research in the ID field improves the daily lives of individuals with ID and their families, and they find research participation to be a positive experience. However, logistic concerns can be an important barrier to their research participation, and they would like more information about the research study both before and after participating.
Identifier
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<a href="http://doi.org/10.1352/1934-9556-52.2.112" target="_blank" rel="noreferrer noopener">10.1352/1934-9556-52.2.112</a>
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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).
2014
2023 SE1 - Parent Perspectives
Adolescent
Adult Child
Child
Conners FA
Family
Female
Hamilton JC
Humans
Infant
Intellectual and Developmental Disabilities
Intellectual Disability
Male
Middle Aged
Patient Selection
Phillips BA
Preschool
Registries
Research
Rhodes JD
Surveys And Questionnaires
Young Adult
-
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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Special Edition #2 2022 List
Text
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Citation List Month
Special Edition #2
URL Address
<a href="http://doi.org/10.26444/aaem/119085" target="_blank" rel="noreferrer noopener">http://doi.org/10.26444/aaem/119085</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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Parents' attitudes towards a difficult situation resulting from the chronic disease of their child
Publisher
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Annals of Agricultural and Environmental Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Adaptation; Adolescent; Adult; Attitude to Health; Child; children; chronic disease; difficult situation; Female; Humans; Male; Middle Aged; paediatric patient; parental attitudes; parents; Parents/psychology; Poland; Preschool; Psychological
Creator
An entity primarily responsible for making the resource
Guz E; Brodowicz-Król M; Kulbaka E; Bartoszuk-Popko M; Lutomski P
Description
An account of the resource
INTRODUCTION AND OBJECTIVE: The family is a reliable and permanent source of support for every human being. It is the key link in the welfare system. The aim of the study is to assess parents' attitudes towards the occurrence of a difficult situation resulting from a child's chronic illness. MATERIAL AND METHODS: The study involved randomly selected parents of children with chronic diseases (N=107). The study was carried out at the Dental Clinic of the 'Little Prince' Children's Hospice in Lublin. RESULTS: The study revealed that for parents a difficult life situation is mainly associated with the disability of a family member or a friend, whereas the action approach is the most frequently chosen attitude towards a child's chronic disease. In the examined group of parents, a significant correlation was observed between the age of the parents and the choice of a specific parental attitude towards the child's chronic disease (in terms of intellectual approach). However, no significant correlations were found between the parents' place of residence and the choice of a specific parental attitude towards the chronic disease of a child. CONCLUSIONS: During the diagnosis of chronically ill children, parents should also be educated in this regard. Therapy and psychological help, as well as directing parents to relevant support groups, organizations or associations, will prove immensely valuable while coping with a difficult life situation.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.26444/aaem/119085" target="_blank" rel="noreferrer noopener">10.26444/aaem/119085</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
2022 Special Edition 2 - Parent Perspectives
Adaptation
Adolescent
Adult
Annals of Agricultural and Environmental Medicine
Attitude To Health
Bartoszuk-Popko M
Brodowicz-Król M
Child
Children
Chronic Disease
difficult situation
Female
Guz E
Humans
Kulbaka E
Lutomski P
Male
Middle Aged
paediatric patient
Parental Attitudes
Parents
Parents/psychology
Poland
Preschool
Psychological
-
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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February 2022 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
February 2022 List
URL Address
<a href="http://doi.org/10.1177/02692163211068997" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/02692163211068997</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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Communication strategies and persuasion as core components of shared decision-making for children with life-limiting conditions: A multiple case 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
2021
Subject
The topic of the resource
adolescent; Child; family; palliative care; decision-making; preschool; qualitative research; longitudinal studies
Creator
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Popejoy E; Almack K; Manning JC; Johnston B; Pollock K
Description
An account of the resource
BACKGROUND: Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, however little is known about factors influencing these processes. AIM: To explore the communication strategies used in shared decision-making for children with life-limiting conditions. DESIGN: A longitudinal, qualitative, multiple-case study. Cases were centred around the child and parent/carer(s). Most cases also included professionals or extended family members. Data from interviews, observations and medical notes were re-storied for each case into a narrative case summary. These were subject to comparative thematic analysis using NVivo11. SETTING/PARTICIPANTS: Eleven cases recruited from three tertiary hospitals in England. 23 participants were interviewed (46 interviews). Cases were followed for up to 12 months between December 2015 and January 2017. 72 observations were conducted and the medical notes of nine children reviewed. FINDINGS: Strategies present during shared decision-making were underpinned by moral work. Professionals presented options they believed were in the child's best interests, emphasising their preference. Options were often presented in advance of being necessary to prevent harm, therefore professionals permitted delay to treatment. Persuasion was utilised over time when professionals felt the treatment was becoming more urgent and when families felt it would not promote the child's psychosocial wellbeing. CONCLUSIONS: Communication strategies in shared decision-making are underpinned by moral work. Professionals should be aware of the models of shared decision-making which include such communication strategies. Open discussions regarding individuals' moral reasoning may assist the process of shared decision-making.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/02692163211068997" target="_blank" rel="noreferrer noopener">10.1177/02692163211068997</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
Adolescent
Almack K
Child
Decision-making
Family
February 2022 List
Johnston B
Longitudinal Studies
Manning JC
Palliative Care
Palliative Medicine
Pollock K
Popejoy E
Preschool
Qualitative Research
-
Dublin Core
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Title
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November 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
November 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jand.2019.06.250" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jand.2019.06.250</a>
Dublin Core
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Title
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Undernutrition at PICU Admission Is Predictor of 60-Day Mortality and PICU Length of Stay in Critically Ill Children
Publisher
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Journal of the Academy of Nutrition and Dietetics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Adolescent; Anthropometry; Body Mass Index; Brazil/epidemiology; Child; Child Nutrition Disorders/*mortality; Critical Illness/*mortality; Female; Humans; Infant; Intensive Care Units; Length of stay; Length of Stay/*statistics & numerical data; Male; malnutrition; Mortality; Nutritional status; Patient Admission/*statistics & numerical data; Patient Discharge/statistics & numerical data; Pediatric intensive care unit; Pediatric/*statistics & numerical data; Predictive Value of Tests; Preschool; Proportional Hazards Models; Prospective Studies; Regression Analysis; Time Factors
Creator
An entity primarily responsible for making the resource
Ventura J C; Hauschild D B; Barbosa E; Bresolin N L; Kawai K; Mehta N M; Moreno Y M F
Description
An account of the resource
BACKGROUND: There are few studies that assess the role of different nutritional assessment variables at pediatric intensive care unit (PICU) admission in predicting clinical outcomes. OBJECTIVE: To identify nutritional variables in the first 4 days of PICU stay that predict 60-day mortality and time to discharge alive from the PICU. DESIGN: Single-center prospective study in Southern Brazil, conducted between July 2013 and February 2016. At PICU admission, children with z scores <-2 for body mass index (BMI)-for-age, mid-upper arm circumference (MUAC)-for-age, and triceps skinfold thickness (TSF)-for-age were considered as undernourished. PARTICIPANTS/SETTING: There were 199 patients, aged <15 years, with PICU stay >48 hours. MAIN OUTCOME MEASURES: Sixty-day mortality and time to discharge alive from the PICU. STATISTICAL ANALYSIS PERFORMED: Cox regression model was applied to determine predictors of 60-day mortality and time to discharge alive from the PICU. RESULTS: Median age was 23.1 months (interquartile range=3.9 to 89.1), and 63% were male, with 18% prevalence of undernutrition at admission by BMI-for-age. Median PICU stay was 7 days (interquartile range=4 to 12), and 60-day mortality was 12%. After adjusting for sex, age, Pediatric Index of Mortality 2, and presence of complex chronic conditions, undernutrition based on BMI-for-age (hazard ratio [HR]=3.75; 95% CI=1.41 to 9.95; P=0.008), MUAC-for-age (HR=7.62; 95% CI=2.42 to 23.97; P=0.001), and TSF-for-age (HR=4.01; 95% CI=1.14 to 14.15; P=0.031) was associated with higher risk of 60-day mortality. Based on MUAC-for-age with the same adjustment model, undernourished children had longer time to discharge alive from the PICU (HR=0.45; 95% CI=0.21 to 0.98; P=0.045). CONCLUSIONS: Undernutrition at PICU admission based on different anthropometric variables was predictive of 60-day mortality and longer time to discharge alive from the PICU.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jand.2019.06.250" target="_blank" rel="noreferrer noopener">10.1016/j.jand.2019.06.250</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
Anthropometry
Barbosa E
Body Mass Index
Brazil/epidemiology
Bresolin N L
Child
Child Nutrition Disorders/*mortality
Critical Illness/*mortality
Female
Hauschild D B
Humans
Infant
Intensive Care Units
Journal of the Academy of Nutrition and Dietetics
Kawai K
Length Of Stay
Length of Stay/*statistics & numerical data
Male
malnutrition
Mehta N M
Moreno Y M F
Mortality
November 2020 List
Nutritional Status
Patient Admission/*statistics & numerical data
Patient Discharge/statistics & Numerical Data
Pediatric Intensive Care Unit
Pediatric/*statistics & numerical data
Predictive Value of Tests
Preschool
Proportional Hazards Models
Prospective Studies
Regression Analysis
Time Factors
Ventura J C
-
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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November 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
November 2020 List
URL Address
<a href="http://doi.org/10.26444/aaem/119085" target="_blank" rel="noreferrer noopener">http://doi.org/10.26444/aaem/119085</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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Parents' attitudes towards a difficult situation resulting from the chronic disease of their child
Publisher
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Annals of Agricultural and Environmental Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Adaptation; Adolescent; Adult; Attitude to Health; Child; children; chronic disease; Chronic Disease/*psychology; difficult situation; Disabled Persons/psychology; Female; Humans; Male; Middle Aged; paediatric patient; parental attitudes; parents; Parents/*psychology; Poland; Preschool; Psychological
Creator
An entity primarily responsible for making the resource
Guz E; Brodowicz-Król M; Kulbaka E; Bartoszuk-Popko M; Lutomski P
Description
An account of the resource
INTRODUCTION AND OBJECTIVE: The family is a reliable and permanent source of support for every human being. It is the key link in the welfare system. The aim of the study is to assess parents' attitudes towards the occurrence of a difficult situation resulting from a child's chronic illness. MATERIAL AND METHODS: The study involved randomly selected parents of children with chronic diseases (N=107). The study was carried out at the Dental Clinic of the 'Little Prince' Children's Hospice in Lublin. RESULTS: The study revealed that for parents a difficult life situation is mainly associated with the disability of a family member or a friend, whereas the action approach is the most frequently chosen attitude towards a child's chronic disease. In the examined group of parents, a significant correlation was observed between the age of the parents and the choice of a specific parental attitude towards the child's chronic disease (in terms of intellectual approach). However, no significant correlations were found between the parents' place of residence and the choice of a specific parental attitude towards the chronic disease of a child. CONCLUSIONS: During the diagnosis of chronically ill children, parents should also be educated in this regard. Therapy and psychological help, as well as directing parents to relevant support groups, organizations or associations, will prove immensely valuable while coping with a difficult life situation.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.26444/aaem/119085" target="_blank" rel="noreferrer noopener">10.26444/aaem/119085</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
Adaptation
Adolescent
Adult
Annals of Agricultural and Environmental Medicine
Attitude To Health
Bartoszuk-Popko M
Brodowicz-Król M
Child
Children
Chronic Disease
Chronic Disease/*psychology
difficult situation
Disabled Persons/psychology
Female
Guz E
Humans
Kulbaka E
Lutomski P
Male
Middle Aged
November 2020 List
paediatric patient
Parental Attitudes
Parents
Parents/*psychology
Poland
Preschool
Psychological
-
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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September 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
September 2020 List
URL Address
<a href="http://doi.org/10.1007/s00467-020-04584-6" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00467-020-04584-6</a>
Dublin Core
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Title
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Rapid response in the COVID-19 pandemic: a Delphi study from the European Pediatric Dialysis Working Group
Publisher
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Pediatric Nephrology
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Adolescent; Child; Chronic/complications/*therapy; Coronavirus Infections/complications/prevention & control/*therapy; COVID-19; Delphi; Delphi Technique; Dialysis; Europe; Evidence-Based Medicine; Humans; Infant; Infection Control; Pandemics; Pandemics/prevention & control; Pneumonia; Preschool; Renal Dialysis; Renal Insufficiency; transplantation; Viral/complications/prevention & control/*therapy
Creator
An entity primarily responsible for making the resource
Eibensteiner F; Ritschl V; Ariceta G; Jankauskiene A; Klaus G; Paglialonga F; Edefonti A; Ranchin B; Schmitt C P; Shroff R; Stefanidis C J; Walle J V; Verrina E; Vondrak K; Zurowska A; Stamm T; Aufricht C
Description
An account of the resource
BACKGROUND: COVID-19 was declared a global health emergency. Since children are less than 1% of reported cases, there is limited information to develop evidence-based practice recommendations. The objective of this study was to rapidly gather expert knowledge and experience to guide the care of children with chronic kidney disease during the COVID-19 pandemic. METHODS: A four-round multi-center Delphi exercise was conducted among 13 centers in 11 European countries of the European Pediatric Dialysis Working Group (EPDWG) between March, 16th and 20th 2020. Results were analyzed using a mixed methods qualitative approach and descriptive statistics. RESULTS: Thirteen COVID-19 specific topics of particular need for guidance were identified. Main themes encompassed testing strategies and results (n = 4), changes in use of current therapeutics (n = 3), preventive measurements of transmission and management of COVID-19 (n = 3), and changes in standard clinical care (n = 3). Patterns of center-specific responses varied according to regulations and to availability of guidelines. CONCLUSIONS: As limited quantitative evidence is available in real time during the rapid spread of the COVID-19 pandemic, qualitative expert knowledge and experience represent the best evidence available. This Delphi exercise demonstrates that use of mixed methodologies embedded in an established network of experts allowed prompt analysis of pediatric nephrologists' response to COVID-19 during this fast-emerging public health crisis. Such rapid sharing of knowledge and local practices is essential to timely and optimal guidance for medical management of specific patient groups in multi-country health care systems such as those of Europe and the US.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00467-020-04584-6" target="_blank" rel="noreferrer noopener">10.1007/s00467-020-04584-6</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
Ariceta G
Aufricht C
Child
Chronic/complications/*therapy
Coronavirus Infections/complications/prevention & control/*therapy
COVID-19
Delphi
Delphi Technique
dialysis
Edefonti A
Eibensteiner F
Europe
Evidence-based Medicine
Humans
Infant
Infection Control
Jankauskiene A
Klaus G
Paglialonga F
Pandemics
Pandemics/prevention & control
Pediatric Nephrology
Pneumonia
Preschool
Ranchin B
Renal Dialysis
Renal Insufficiency
Ritschl V
Schmitt C P
September 2020 List
Shroff R
Stamm T
Stefanidis C J
Transplantation
Verrina E
Viral/complications/prevention & control/*therapy
Vondrak K
Walle J V
Zurowska 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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August 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
August 2020 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2017-314525" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2017-314525</a>
Dublin Core
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Title
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Fifteen-minute consultation: Not the whole story-considering children's spirituality and advance care planning
Publisher
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Archives of Disease in Childhood - Education and Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Humans; Adolescent; Child; Female; Male; Middle Aged; palliative care; Attitude to Death; Preschool; Adult; Attitude to Health; Spirituality; Practice Guidelines as Topic; Pediatrics/*standards; Advance Care Planning/*standards; United Kingdom; Family/*psychology; paediatric practice; Palliative Care/*psychology/*standards
Creator
An entity primarily responsible for making the resource
Clayton M; Aldridge J
Description
An account of the resource
In a society of diverse views, faiths and beliefs, what can paediatric palliative care contribute to our understanding of children's spirituality? By failing to recognise and respond to their spirituality in this work, we risk missing something of profound importance to children and their families. We overlook their search for wholeness in the absence of cure and fall short of offering truly holistic care. This paper explores how developments in advance care planning and related documentation are addressing these issues. Since children's spirituality is elusive and rarely explored in practice, it aims to clarify our understanding of it with a variety of examples and contains suggestions for hearing the voice of the child amid the needs of parents and professionals.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2017-314525" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-314525</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
Adolescent
Adult
Advance Care Planning/*standards
Aldridge J
Archives of Disease in Childhood - Education and Practice
Attitude To Death
Attitude To Health
August 2020 List
Child
Clayton M
Family/*psychology
Female
Humans
Male
Middle Aged
Paediatric Practice
Palliative Care
Palliative Care/*psychology/*standards
Pediatrics/*standards
Practice Guidelines As Topic
Preschool
Spirituality
United Kingdom
-
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
July 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
July 2020 List
URL Address
<a href="http://doi.org/10.1097/pcc.0000000000001868" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/pcc.0000000000001868</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
Characteristics and Outcomes of Critical Illness in Children With Feeding and Respiratory Technology Dependence
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
2019
Subject
The topic of the resource
Adolescent; Artificial/adverse effects/*statistics & numerical data; Biomedical Technology; Case-Control Studies; Child; Critical Care/*methods; Critical Illness/therapy; Health Care/*statistics & numerical data; Humans; Infant; Intensive Care Units; Newborn; Outcome Assessment; Parenteral Nutrition; Pediatric/statistics & numerical data; Preschool; Prospective Studies; Respiration; Severity of Illness Index; Total/adverse effects/*statistics & numerical data
Creator
An entity primarily responsible for making the resource
Heneghan J A; Reeder R W; Dean J M; Meert K L; Berg R A; Carcillo J; Newth C J L; Dalton H; Tamburro R; Pollack M M
Description
An account of the resource
OBJECTIVES: Children with dependence on respiratory or feeding technologies are frequently admitted to the PICU, but little is known about their characteristics or outcomes. We hypothesized that they are at increased risk of critical illness-related morbidity and mortality compared with children without technology dependence. DESIGN: Secondary analysis of prospective, probability-sampled cohort study of children from birth to 18 years old. Demographic and clinical characteristics were assessed. Outcomes included death, survival with new morbidity, intact survival, and survival with functional status improvement. SETTING: General and cardiovascular PICUs at seven participating children's hospitals as part of the Trichotomous Outcome Prediction in Critical Care study. SUBJECTS: Children from birth to 18 years of age as part of the Trichotomous Outcome Prediction in Critical Care study. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Children with technology dependence composed 19.7% (1,989/10,078) of PICU admissions. Compared with those without these forms of technology dependence, these children were younger, received more ICU-specific therapeutics, and were more frequently readmitted to the ICU. Death occurred in 3.7% of technology-dependent patients (n = 74), and new morbidities developed in 4.5% (n = 89). Technology-dependent children who developed new morbidities had higher Pediatric Risk of Mortality scores and received more ICU therapies than those who did not. A total of 3.0% of technology-dependent survivors (n = 57) showed improved functional status at hospital discharge. CONCLUSIONS: Children with feeding and respiratory technology dependence composed approximately 20% of PICU admissions. Their new morbidity rates are similar to those without technology dependence, which contradicts our hypothesis that children with technology dependence would demonstrate worse outcomes. These comparable outcomes, however, were achieved with additional resources, including the use of more ICU therapies and longer lengths of stay. Improvement in functional status was seen in some technology-dependent survivors of critical illness.
Identifier
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<a href="http://doi.org/10.1097/pcc.0000000000001868" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000001868</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
Adolescent
Artificial/adverse effects/*statistics & numerical data
Berg R A
Biomedical Technology
Carcillo J
Case-Control Studies
Child
Critical Care/*methods
Critical Illness/therapy
Dalton H
Dean J M
Health Care/*statistics & numerical data
Heneghan J A
Humans
Infant
Intensive Care Units
July 2020 List
Meert K L
Newborn
Newth C J L
outcome assessment
Parenteral Nutrition
Pediatric Critical Care Medicine
Pediatric/statistics & Numerical Data
Pollack M M
Preschool
Prospective Studies
Reeder R W
Respiration
Severity Of Illness Index
Tamburro R
Total/adverse effects/*statistics & numerical data
-
Dublin Core
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Title
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April 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
April 2020 List
URL Address
<a href="http://doi.org/10.1111/ped.13924" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/ped.13924</a>
Dublin Core
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Title
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End-of-life care in the pediatric intensive care unit: Survey in Japan
Publisher
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Pediatrics International
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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Adolescent; Attitude of Health Personnel; Child; Clinical Decision-Making/mt [Methods]; Health Care Surveys; Humans; Infant; intensive care units; Intensive Care Units; Japan; Palliative Care/mt [Methods]; Palliative Care/sn [Statistics & Numerical Data]; Palliative Care/st [Standards]; Pediatric/sn [Statistics & Numerical Data]; Pediatric/st [Standards]; Physicians'/sn [Statistics & Numerical Data]; Physicians'/st [Standards]; Practice Patterns; Practice Patterns Physicians'/*ethics; Preschool; Terminal Care/mt [Methods]; Terminal Care/sn [Statistics & Numerical Data]; Terminal Care/st [Standards]
Creator
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Seino Y; Kurosawa H; Shiima Y; Niitsu T
Description
An account of the resource
BACKGROUND: End-of-life (EOL) care is an important topic in critical care medicine, but EOL discussions with families can be difficult and stressful for intensivists. The aim of this study was to clarify the current practices and barriers facing pediatric intensive care unit (PICU) EOL care and to identify the requisites for excellent PICU EOL care in Japan. METHODS: A survey was conducted in 29 facilities across Japan in 2016. The questionnaire consisted of 19 multiple-choice questions and one open-ended question. RESULTS: Twenty-seven facilities responded to the survey. Only 19% had educational programs on EOL care for fellows or residents. Although 21 hospitals (78%) had a multidisciplinary palliative care team, only eight of these teams were involved in EOL care in PICUs. Mental health care for health-care providers provided by a psychiatrist was rare (4%). The free comments were categorized as individual, team, environment, legal/ethics, or culture. Commonly raised individual issues included "lack of experience and knowledge about EOL care", "fear of making the decision to end care", and "reluctance to be involved in EOL care because of its complex process". Team issues included "insufficient frequency of conferences" and "non-multidisciplinary approach". Legal and ethics issues were "lack of legal support" and "fear of lawsuits". CONCLUSIONS: This study is the first to investigate the current conditions and barriers in PICU EOL care in Japan. Most of the facilities involved were not satisfied with current practices. A need was identified for relevant educational programs, as well as the importance of multidisciplinary and legal support.
Identifier
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<a href="http://doi.org/10.1111/ped.13924" target="_blank" rel="noreferrer noopener">10.1111/ped.13924</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
Adolescent
April 2020 List
Attitude Of Health Personnel
Child
Clinical Decision-Making/mt [Methods]
Health Care Surveys
Humans
Infant
Intensive Care Units
Japan
Kurosawa H
Niitsu T
Palliative Care/mt [methods]
Palliative Care/sn [Statistics & Numerical Data]
Palliative Care/st [standards]
Pediatric/sn [Statistics & Numerical Data]
Pediatric/st [Standards]
Pediatrics International
Physicians'/sn [Statistics & Numerical Data]
Physicians'/st [Standards]
Practice Patterns
Practice Patterns Physicians'/*ethics
Preschool
Seino Y
Shiima Y
Terminal Care/mt [methods]
Terminal Care/sn [statistics & Numerical Data]
Terminal Care/st [standards]
-
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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April 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
April 2020 List
URL Address
<a href="http://doi.org/10.5014/ajot.2020.033456" target="_blank" rel="noreferrer noopener">http://doi.org/10.5014/ajot.2020.033456</a>
Dublin Core
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Title
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Play in Children With Life-Threatening and Life-Limiting Conditions: A Scoping Review
Publisher
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American Journal of Occupational Therapy
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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child; humans; interpersonal relations; parent-psychology; parents; Preschool; psychology
Creator
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Jasem Z A; Darlington A S; Lambrick D; Grisbrooke J; Randall D C
Description
An account of the resource
IMPORTANCE: Play is essential to children and provides opportunities to promote their health and well-being. Children living with life-threatening and life-limiting conditions experience deprivation in play. OBJECTIVE: To conduct a scoping review of studies that examined play of children with a life-threatening or life-limiting condition to explore their play characteristics and possible factors influencing their participation in play. DATA SOURCES: A search of literature published between 1990 and 2017 was conducted in the health, social care, and built-environment fields. The scoping review included multiple searches in electronic databases, a gray literature search, and manual searches of relevant journals and reference lists of included articles. STUDY SELECTION AND DATA COLLECTION: Defined criteria were used to select articles describing studies that examined the daily play of children ages 5-11 yr with life-threatening and life-limiting conditions; articles that focused on play as therapy or that used parents' accounts of a service were excluded. The identified articles were critically appraised with the Critical Appraisal Skills Programme and the Joanna Briggs Institute Critical Appraisal Tools. FINDINGS: Thirteen articles were reviewed. The findings indicate that children's play is influenced by their health conditions and play opportunities and by the limited availability of appropriate play equipment and spaces allowing play and social interaction. CONCLUSIONS AND RELEVANCE: Available appropriate play opportunities need to be maximized for children living with life-threatening and life-limiting conditions. This goal can be achieved by understanding and considering the needs of these children and by facilitating environmental enablers and limiting barriers. WHAT THIS ARTICLE ADDS: Promoting the participation in play of children who live with life-threatening and life-limiting conditions is important to their health and well-being and can be achieved by targeting the cultural, social, and physical environmental factors that shape the children's play.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.5014/ajot.2020.033456" target="_blank" rel="noreferrer noopener">10.5014/ajot.2020.033456</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).
2020
American Journal Of Occupational Therapy
April 2020 List
Child
Darlington A S
Grisbrooke J
Humans
Interpersonal Relations
Jasem Z A
Lambrick D
parent-psychology
Parents
Preschool
Psychology
Randall D C
-
Dublin Core
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Title
A name given to the resource
2019 Oncology 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
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1080/0284186x.2018.1478125" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/0284186x.2018.1478125</a>
Dublin Core
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Title
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Impact of parental socioeconomic factors on childhood cancer mortality: a population-based registry study
Publisher
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Acta Oncologica
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Adolescent; Child; Female; Finland/epidemiology; Humans; Income; Infant; Male; Mortality; Neoplasms/*mortality/therapy; Parents; Preschool; Registries; Socioeconomic Factors; Young Adult
Creator
An entity primarily responsible for making the resource
Tolkkinen A; Madanat-Harjuoja L; Taskinen M; Rantanen M; Malila N; Pitkaniemi J
Description
An account of the resource
INTRODUCTION: Parental socioeconomic status has been proposed to have an influence on childhood cancer mortality even in high-income countries. Our study investigated the influence of parental socioeconomic factors on childhood cancer mortality. MATERIAL AND METHODS: We identified 4437 patients diagnosed with cancer under the age of 20 from 1990 to 2009 and their parents from the Finnish cancer and central population registers. Information on death from primary cancer during five-year follow-up and parental socioeconomic factors was obtained from Statistics Finland. Poisson regression modeling was used to estimate hazard ratios (HRs) for factors related to cause-specific mortality and recursive tree based survival analysis to identify important risk factors and interactions. RESULTS: Mortality was lower in the highest quartile of combined parental disposable income (HR 0.68, CI 95% 0.52-0.89) compared to the lowest quartile. In the most recent diagnostic period from 2000 to 2009, highest attained education of either parent being post-secondary predicted lower mortality (HR 0.73, CI 95% 0.60-0.88) compared to parents who had attained primary or lower education. CONCLUSION: Despite high quality public health care and comprehensive social security, both high parental income and education were associated with lower mortality after childhood cancer. Lower health literacy and financial pressures limiting treatment adherence may explain higher mortality in children with less educated parents and parents with lower income. Motivation and support during treatment and follow-up period is needed concerning the families of these patients.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/0284186x.2018.1478125" target="_blank" rel="noreferrer noopener">10.1080/0284186x.2018.1478125</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).
2018
Acta Oncologica
Adolescent
Child
Female
Finland/epidemiology
Humans
Income
Infant
Madanat-Harjuoja L
Male
Malila N
Mortality
Neoplasms/*mortality/therapy
Oncology 2019 List
Parents
Pitkaniemi J
Preschool
Rantanen M
Registries
Socioeconomic Factors
Taskinen M
Tolkkinen A
Young Adult
-
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
2019 Oncology 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
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1111/ecc.12879" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/ecc.12879</a>
Dublin Core
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Title
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Burden of treatment in the face of childhood cancer: A quantitative study using medical records of deceased children
Publisher
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European Journal of Cancer Care (Engl)
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Adaptation; Adolescent; burden of treatment; Central Nervous System Neoplasms/therapy; Child; Death; family; Female; Hospitalization; Humans; Infant; inpatient stays; Length of Stay; leukaemia; Leukemia/therapy; Male; Medical Records; Neoplasms/*therapy; Newborn; paediatric oncology; place of death; Preschool; Psychological; Retrospective Studies; Switzerland; Terminal Care
Creator
An entity primarily responsible for making the resource
Rost M; Wangmo T; Rakic M; Acheson E; Rischewski J; Hengartner H; Kuhne T; Elger B S
Description
An account of the resource
Lived experiences of childhood cancer patients and their families have been described as interrupted and as a loss of normal life. Apart from symptoms due to the cancer disease, families continuously experience burden of treatment. Since coping capacities are unique to each individual, we captured variables that offer objective measures of treatment burden, with a particular focus on the disruptive effects of treatment on families' lives. Our sample was comprised by 193 children that died of cancer. Medical records were extracted retrospectively. Quantitative data were statistically analysed with respect to variables related to treatment burden. Deceased children with cancer and their families faced a significant burden of treatment. Results revealed that deceased leukaemia patients had a higher number of inpatient stays, spent more time in the hospital both during their illness and during the last month of their life, and were more likely to die in the hospital when compared to deceased patients with CNS neoplasms and with other diagnoses. Our findings highlight the disruptive effects of treatment that are likely to have a great impact on families' daily life, that go beyond exclusively focusing on side effects, and that needs to be taken into account by the treating staff.
Identifier
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<a href="http://doi.org/10.1111/ecc.12879" target="_blank" rel="noreferrer noopener">10.1111/ecc.12879</a>
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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).
2018
Acheson E
Adaptation
Adolescent
burden of treatment
Central Nervous System Neoplasms/therapy
Child
Death
Elger B S
European Journal of Cancer Care (Engl)
Family
Female
Hengartner H
Hospitalization
Humans
Infant
inpatient stays
Kuhne T
Length Of Stay
leukaemia
Leukemia/therapy
Male
Medical Records
Neoplasms/*therapy
Newborn
Oncology 2019 List
Paediatric oncology
Place Of Death
Preschool
Psychological
Rakic M
Retrospective Studies
Rischewski J
Rost M
Switzerland
Terminal Care
Wangmo T
-
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
2019 Oncology 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
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1177/1049732318786484" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049732318786484</a>
Dublin Core
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Title
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Children's and Parents' Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration
Publisher
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Qualitative Health Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adaptation; Adaptation; Adolescent; Anthropology; Brain Neoplasms/*psychology; cancer; Child; children; coping; Cultural; enduring; experiences; Female; health; Humans; illness and disease; Infant; lived experience; Male; meta-ethnogrpahy; metasynthesis; Method: interpretive methods; Parents/*psychology; Preschool; Psychological; psychosocial aspects; Qualitative Research; qualitative. Geographic: Taiwan; quality of life; Quality of Life/*psychology; resilience; Resilience; resistance; survivorship; Young Adult
Creator
An entity primarily responsible for making the resource
Beecham E; Langner R; Hargrave D; Bluebond-Langner M
Description
An account of the resource
The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand the term has not been adequately investigated. This study aimed to review the current qualitative research on CYP, parents' and clinicians' concepts of QoL for CYP with BTs using meta-ethnography. Six studies were found, which reflected on the concept of QoL in CYP with BTs; all explored the CYP's perspective and one study also touched upon parents' concept. A conceptual model is presented. Normalcy (a "new normal") was found to be the key element in the concept. This study calls for a conception of QoL, which foregrounds normalcy over the more common health-related quality of life (HRQoL) and the need to understand the concept from all perspectives and accommodate change over time.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049732318786484" target="_blank" rel="noreferrer noopener">10.1177/1049732318786484</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
Adaptation
Adolescent
Anthropology
Beecham E
Bluebond-Langner M
Brain Neoplasms/*psychology
Cancer
Child
Children
Coping
Cultural
enduring
Experiences
Female
Hargrave D
Health
Humans
Illness and Disease
Infant
Langner R
lived experience
Male
meta-ethnogrpahy
Metasynthesis
Method: interpretive methods
Oncology 2019 List
Parents/*psychology
Preschool
Psychological
psychosocial aspects
Qualitative Health Research
Qualitative Research
qualitative. Geographic: Taiwan
Quality Of Life
Quality of Life/*psychology
Resilience
Resistance
Survivorship
Young Adult
-
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
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="https://www.ncbi.nlm.nih.gov/pubmed/31682350">https://www.ncbi.nlm.nih.gov/pubmed/31682350</a>
Dublin Core
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Title
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An Objective Approach to Decisions to Withdraw or Withhold Life-sustaining Medical Treatment
Publisher
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Journal of Law and 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
Australia; best interests; child; Child; Decision Making; England; futility; Humans; life-sustaining treatment; New Zealand; parens patriae; Preschool; Wales; withdrawing treatment; withholding treatment; Withholding Treatment
Creator
An entity primarily responsible for making the resource
Savulescu J; Cameron J
Description
An account of the resource
Courts in England and Wales, Australia, and New Zealand have insisted the question of when it is acceptable to withdraw or withhold life-sustaining medical treatment from a child must be considered on a case-by-case basis. Over the last 40 years a number of cases have considered whether treatment is objectively in the child's best interests. This article seeks to identify whether there are factors identified and weighed in a consistent manner across cases. Thirty cases involving decisions about the provision of life-sustaining medical treatment to children three years old or younger were identified. Judges regularly refer to the need to weigh benefits and burdens and these factors were identified and assigned scores. Eight key factors were identified, and a scoring range was assigned to each. The factors focus on the condition and position of the child and the burdens of invasive medical treatment. The review demonstrates there are factors consistently identified and despite criticisms of the indeterminacy of the best interests test, there may be a broadly consistent approach to decision-making. Cognitive capacity and unavoidably imminent death appear to be the two most influential factors in determining whether life-sustaining treatment should be provided.
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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
Australia
best interests
Cameron J
Child
Decision Making
England
Futility
Humans
January 2020 List
Journal of law and medicine
life-sustaining treatment
New Zealand
parens patriae
Preschool
Savulescu J
Wales
Withdrawing Treatment
Withholding Treatment
-
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
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/10.1177/1178632919879422" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1178632919879422</a>
Dublin Core
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Title
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The Effects of Chronic Disease on Ambulatory Care–Sensitive Hospitalizations for Children or Youth
Publisher
An entity responsible for making the resource available
Health Services Insights
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Adolescence; Adolescent; Age Factors; Ambulatory Care -- In Adolescence; Ambulatory Care -- In Infancy and Childhood; Child; Chronic Disease; Confidence Intervals; Cross Sectional Studies; Data Analysis Software; Descriptive Statistics; Female; Hospitalized; Human; Infant; Logistic Regression; Male; Models; Newborn; Odds Ratio; Patient Discharge; Post Hoc Analysis; Preschool; Probability; Race Factors; ROC Curve; Sex Factors; Statistical; Texas
Creator
An entity primarily responsible for making the resource
Phillips C D; Truong C; Kum H C; Nwaiwu O; Ohsfeldt R
Description
An account of the resource
Considerable research has focused on hospitalizations for ambulatory care–sensitive conditions (ACSHs), but little of that research has focused on the role played by chronic disease in ACSHs involving children or youth (C/Y). This research investigates, for C/Y, the effects of chronic disease on the likelihood of an ACSH. The database included 699 473 hospital discharges for individuals under 18 in Texas between 2011 and 2015. Effects of chronic disease, individual, and contextual factors on the likelihood of a discharge involving an ACSH were estimated using logistic regression. Contrary to the results for adults, the presence of chronic diseases or a complex chronic disease among children or youth was protective, reducing the likelihood of an ACSH for a nonchronic condition. Results indicate that heightened ambulatory care received by C/Y with chronic diseases is largely protective. Two of more chronic conditions or at least one complex chronic condition significantly reduced the likelihood of an ACSH.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1178632919879422" target="_blank" rel="noreferrer noopener">10.1177/1178632919879422</a>
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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).
2019
Adolescence
Adolescent
Age Factors
Ambulatory Care -- In Adolescence
Ambulatory Care -- In Infancy and Childhood
Child
Chronic Disease
Confidence Intervals
Cross Sectional Studies
Data Analysis Software
Descriptive Statistics
Female
Health Services Insights
Hospitalized
Human
Infant
January 2020 List
Kum H C
Logistic Regression
Male
Models
Newborn
Nwaiwu O
Odds Ratio
Ohsfeldt R
Patient Discharge
Phillips C D
Post Hoc Analysis
Preschool
Probability
Race Factors
ROC Curve
Sex Factors
statistical
Texas
Truong C
-
Dublin Core
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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/10.1111/j.1741-4520.2012.00356.x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/j.1741-4520.2012.00356.x</a>
Dublin Core
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Title
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Age-dependent change in behavioral feature in Rubinstein-Taybi syndrome
Publisher
An entity responsible for making the resource available
Congenital Anomalies
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
Adolescent; Adult; Age; Factors; Behavior; Child; Preschool; Female; Humans; Infant; Male; Rubinstein-Taybi Syndrome/di [Diagnosis]; Surveys and Questionnaires; Young Adult; behavioral problems; Rubinstein-Taybi Syndrome; trajectory; characteristics; anxiety; depression; aggression; aggressive behavior
Creator
An entity primarily responsible for making the resource
Yagihashi T; Kosaki K; Okamoto N; Mizuno S; Kurosawa K; Takahashi T; Sato Y; Kosaki R
Description
An account of the resource
Rubinstein-Taybi syndrome (RTS) is characterized by developmental delay, postnatal growth retardation, typical facial appearance, and broad thumbs and big toes. The behavioral phenotype of children with RTS has been described as friendly and having good social contacts; however, a short attention span and hyperactivity are sometimes present. Little attention has been paid to the behavioral aspects of adults with RTS. We conducted an observational study focusing on behavioral problems in adolescents and adults with RTS compared with children with RTS. A total of 63 patients with RTS and their caretakers answered self-administered questionnaires regarding behavioral features including the Child Behavior Checklist (CBCL). High total CBCL scores were observed, and the mean score was beyond the clinical cut-off point. After stratification into two groups according to age, the older group (>14 years) displayed statistically significant higher scores for Anxious/Depression (P = 0.002) and Aggressive Behavior (P = 0.036) than the younger group (<13 years). In analyses of single items, statistically significant differences between the younger group and the older group were found for 'Nervous, high-strung, or tense' (31.3% vs 67.7%, P = 0.004) and 'Too fearful or anxious' (37.5% vs 64.5%, P = 0.032). Here, we showed that the specific behavioral phenotypes of RTS change during adolescence, with anxiety, mood instability, and aggressive behavior emerging as patients age. A clear need exists to follow-up patients with RTS to catch the eventual emergence of psychiatric problems with age. If necessary, pharmacological treatment should be considered.Copyright © 2012 The Authors. Congenital Anomalies © 2012 Japanese Teratology Society.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1741-4520.2012.00356.x" target="_blank" rel="noreferrer noopener">10.1111/j.1741-4520.2012.00356.x</a>
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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).
2012
Adolescent
Adult
Age
Aggression
aggressive behavior
anxiety
Behavior
behavioral problems
characteristics
Child
Congenital Anomalies
Depression
Factors
Female
Humans
Infant
Kosaki K
Kosaki R
Kurosawa K
Male
Mizuno S
Okamoto N
Preschool
Rubinstein-Taybi Syndrome
Rubinstein-Taybi Syndrome/di [Diagnosis]
Sato Y
Surveys And Questionnaires
Takahashi T
Trajectory
Yagihashi T
Young Adult
-
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/10.1002/ajmg.1320590412" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ajmg.1320590412</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
Treatment of obstructive sleep apnea in achondroplasia: evaluation of sleep, breathing, and somatosensory-evoked potentials
Publisher
An entity responsible for making the resource available
American Journal of Medical Genetics
Date
A point or period of time associated with an event in the lifecycle of the resource
1995
Subject
The topic of the resource
Achondroplasia/co [Complications]; Adolescent; Adult Child; Child; Preschool; Evoked Potentials; Female; Humans; Infant; Male; Middle Aged; Respiration; Sleep Apnea Syndromes/et [Etiology]; Sleep Apnea Syndromes/th [Therapy]; Tonsillectomy; Weight Loss; breathing difficulties; achondroplasia; surgical interventions; physical interventions; adenotonsillectomy; losing weight; weight loss; CPAP; respiratory disturbance index
Creator
An entity primarily responsible for making the resource
Waters K A; Everett F; Sillence D O; Fagan E R; Sullivan C E
Description
An account of the resource
The occurrence of obstructive sleep apnea (OSA) is achondroplasia has been linked to brain stem compression. Overnight sleep studies (11 subjects) and somatosensory-evoked potentials (SEP's, 10 subjects) were recorded before and after conventional treatment of OSA in achondroplasia. The two groups were derived from 30 subjects who underwent diagnostic sleep studies and SEPs, including 15 females and 15 males with a median age 6.6 years (range 1.0-47.6) at the time of the first study. In 30 initial studies there was no correlation between severity of OSA and abnormalities on SEP evaluation. Treatment of 17 subjects included adenotonsillectomy (n = 3), weight loss (n = 1), and nasal-mask continuous positive airway pressure (CPAP) (n = 13). Sleep studies in 11 subjects after a delay of 8.8 +/- 2.8 months showed a reduction in respiratory disturbance index (RDI) from 38.4 +/- 6.9 to 6.5 +/- 1.8 events hr(-1) (p < 0.001) and movements/arousals fell from 10.4 +/- 2.2 to 4.8 +/- 0.2 hr(-1) (p < 0.04). Obstructive events were reduced from 33.7 +/- 6.9 to 2.4 +/- 1.0 hr(-1) (p < 0.001). Improvement of respiratory indices was associated with an increased proportion of slow-wave sleep from 25.2 +/- 4.0% to 32.3 +/- 2.4% (p = 0.01), and decrease in stage 1-2 sleep from 59.3 +/- 5.8% to 46.6 +/- 1.9% (p = 0.03). There was no increase in the percentage of REM sleep (15.2 to 21.2%). Repeat SEP studies in 10 subjects, after clinically effective treatment of OSA, showed improvement of SEP score of at least 1 grade, in 5 of 7 (71%) with initially abnormal values. We conclude that treatment of relieve upper airway obstruction improves OSA in achondroplasia, accompanied by changes in sleep structure and, in some cases, improved studies of neurological function.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/ajmg.1320590412" target="_blank" rel="noreferrer noopener">10.1002/ajmg.1320590412</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).
1995
achondroplasia
Achondroplasia/co [Complications]
adenotonsillectomy
Adolescent
Adult Child
American Journal Of Medical Genetics
breathing difficulties
Child
CPAP
Everett F
Evoked Potentials
Fagan E R
Female
Humans
Infant
losing weight
Male
Middle Aged
physical interventions
Preschool
Respiration
respiratory disturbance index
Sillence D O
Sleep Apnea Syndromes/et [Etiology]
Sleep Apnea Syndromes/th [Therapy]
Sullivan C E
surgical interventions
Tonsillectomy
Waters K A
Weight Loss
-
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/10.1002/ppul.21291" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ppul.21291</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
The feasibility and validity of forced spirometry in ataxia telangiectasia
Publisher
An entity responsible for making the resource available
Pediatric Pulmonology
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Adolescent; Ataxia Telangiectasia/di [Diagnosis]; Ataxia Telangiectasia/pp [Physiopathology]; Case-Control Studies; Child; Preschool; Feasibility Studies; Female; Humans; Male; Reproducibility of Results; Spirometry; Young Adult; breathing difficulties; Ataxia Telangiectasia; trajectory; characteristics; lung deterioration
Creator
An entity primarily responsible for making the resource
Vilozni D; Berkun Y; Levi Y; Weiss B; Jacobson J M; Efrati O
Description
An account of the resource
OBJECTIVES: To explore the feasibility and validity of forced spirometry in patients with ataxia telangiectasia (A-T). STUDY DESIGN: Twenty-eight patients (aged 3.7-19.3 years) performed spirometry on 47 occasions. Parameters studied were technical quality and relation to: predicted values, pulmonary illness. RESULTS: Start of test criteria for correct expiratory effort was significantly prolonged (183 +/- 115 ms; P < 0.001). The rise-time to peak flow in children free of respiratory symptoms (Group-FRS; n = 8) increased by 16.2 +/- 12.5 ms/year above recommended and in children having recurrent infections (n = 8) 30.4 +/- 16.1 ms/year, P < 0.01. Expiration-time was significantly shorter than requested (1.21 +/- 0.47 sec) and was ended abruptly in 57% of the patients. FEV(1) could not be established by 8/20 patients. The intra-subject reproducibility met criteria (4.4 +/- 2.7%, 5.2 +/- 2.8%, 2.9 +/- 3.2%, 6.3 +/- 5.3%, for FVC, FEV(0.5), PEF, FEF(25-75), respectively). Group-FRS showed yearly deterioration in FVC of 2.2%, while patients with hyper-reactive airways (Group-HRA; n =12) had a deterioration rate of 3.6%/year. FEV(0.5) deterioration rate was similar in both groups (2.2 and 2.0, respectively), but baseline values in Group-HRA were significantly lower than those of Group-FRS (P = 0.029) in similar young ages, indicating airway obstruction at early ages in Group-HRA. FEV(0.5) values deterioration also correlated with body mass index (P< 0.017). CONCLUSION: Forced spirometry in A-T patients is reproducible and has a distinct pattern, although curves do not meet other recommendations for acceptable criteria. The study insinuates that a rapid deterioration in lung function occurs in A-T patients with recurrent respiratory infection, suggesting that early intervention may prevent further deterioration or improve their lung function. Further studies are needed to confirm our results.Copyright © 2010 Wiley-Liss, Inc.
Identifier
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<a href="http://doi.org/10.1002/ppul.21291" target="_blank" rel="noreferrer noopener">10.1002/ppul.21291</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).
2010
Adolescent
ataxia telangiectasia
ataxia telangiectasia/di [Diagnosis]
Ataxia Telangiectasia/pp [Physiopathology]
Berkun Y
breathing difficulties
Case-Control Studies
characteristics
Child
Efrati O
Feasibility Studies
Female
Humans
Jacobson J M
Levi Y
lung deterioration
Male
Pediatric Pulmonology
Preschool
Reproducibility of Results
Spirometry
Trajectory
Vilozni D
Weiss B
Young Adult
-
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/10.1177/0883073812441999" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0883073812441999</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
Movement disorder in ataxia-telangiectasia: treatment with amantadine sulfate
Publisher
An entity responsible for making the resource available
Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Adolescent; Amantadine/tu [Therapeutic Use]; Antiparkinson Agents/Antiparkinson [Therapeutic Use]; Ataxia Telangiectasia/co [Complications]; Child; Preschool; Disability; Evaluation; Humans; Movement Disorders/dt [Drug Therapy]; Movement Disorders/et [Etiology]; Neurologic Examination; Prospective Studies; Severity of Illness Index; 0 (Antiparkinson Agents); BF4C9Z1J53 (Amantadine); tone and motor problems; ataxia telangiectasia; pharmacologic intervention; amantadine sulfate
Creator
An entity primarily responsible for making the resource
Nissenkorn A; Hassin-Baer S; Lerman S F; Levi Y B; Tzadok M; Ben-Zeev B
Description
An account of the resource
Ataxia-telangiectasia is a cerebellar neurodegenerative disorder presenting with ataxia, chorea, myoclonus, and bradykinesia. Literature on treatment of movement disorders is scarce. We treated 17 children (aged 11.2 +/- 3.9 years) for 8 weeks with the dopaminergic and anti-N-methyl-d-aspartate (NMDA) agent amantadine sulfate 6.3 +/- 0.87 mg/kg/d. Ataxia was assessed by using the International Cooperative Ataxia Scale, parkinsonism by the Unified Parkinson Disease Rating Scale, and chorea/myoclonus by the Abnormal Involuntary Movement Scale. Responders were considered those patients who had at least 20% improvement in the summation of the 3 scales. Overall, 76.5% of patients were responders, with a mean 29.3% improvement. Ataxia, involuntary movements, and parkinsonism improved significantly (25.3%, 32.5%, and 29.5%, respectively); (P < .001, t test). Side effects were mild and transient, and they did not lead to drug discontinuation. Amantadine is a well-tolerated and effective treatment for motor symptoms in ataxia telangiectasia. Assessment of long-term effects and a double-blind study should follow.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0883073812441999" target="_blank" rel="noreferrer noopener">10.1177/0883073812441999</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).
0 (Antiparkinson Agents)
2013
Adolescent
amantadine sulfate
Amantadine/tu [Therapeutic Use]
Antiparkinson Agents/Antiparkinson [Therapeutic Use]
ataxia telangiectasia
Ataxia Telangiectasia/co [Complications]
Ben-Zeev B
BF4C9Z1J53 (Amantadine)
Child
Disability
Evaluation
Hassin-Baer S
Humans
Journal of Child Neurology
Lerman S F
Levi Y B
Movement Disorders/dt [Drug Therapy]
Movement Disorders/et [Etiology]
Neurologic Examination
Nissenkorn A
pharmacologic intervention
Preschool
Prospective Studies
Severity Of Illness Index
tone and motor problems
Tzadok M
-
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/10.1111/j.1365-2788.2005.00649.x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/j.1365-2788.2005.00649.x</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
The association between environmental events and self-injurious behaviour in Cornelia de Lange syndrome
Publisher
An entity responsible for making the resource available
Journal of Intellectual Disability Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Adolescent Child; Child; Preschool; De Lange Syndrome/ep [Epidemiology]; Environment; Female; Humans; Male; Self-Injurious Behavior/di [Diagnosis]; Self-Injurious Behavior/ep [Epidemiology]; Self-Injurious Behavior/px [Psychology]; Severity of Illness Index; behavioral problems; De Lange syndrome; trajectory; characteristics; self-injurious behavior
Creator
An entity primarily responsible for making the resource
Moss J; Oliver C; Hall S; Arron K; Sloneem J; Petty J
Description
An account of the resource
BACKGROUND: There has been limited empirical research into the environmental causes of self-injury in Cornelia de Lange syndrome. The present study examined the variability of self-injurious behaviour in Cornelia de Lange syndrome across environmental setting events. Additionally, the association between setting events and more specific environmental events was examined. METHOD: A descriptive analysis of observational data on eight children with Cornelia de Lange syndrome aged between 4 and 14 years was carried out. The association between self-injurious behaviour and four environmental setting events and between specific environmental events and setting events was examined using established statistical methods for observational data. RESULTS: Seven out of eight of the participants showed at least one form of self-injurious behaviour that was associated with a particular setting event. The study also demonstrated that the relationship between setting events and environmental events is extremely variable across individuals. CONCLUSIONS: Self-injurious behaviour in some individuals with Cornelia de Lange syndrome is associated with environmental events although the precise nature of the association warrants clarification. Using broad setting events as a methodological tool in isolation provides some insight into the role of specific environmental factors in maintaining self-injurious behaviour but the integrity of setting events must be established.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1365-2788.2005.00649.x" target="_blank" rel="noreferrer noopener">10.1111/j.1365-2788.2005.00649.x</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).
2005
Adolescent Child
Arron K
behavioral problems
characteristics
Child
De Lange syndrome
De Lange Syndrome/ep [Epidemiology]
Environment
Female
Hall S
Humans
Journal Of Intellectual Disability Research
Male
Moss J
Oliver C
Petty J
Preschool
Self-Injurious behavior
Self-Injurious Behavior/di [Diagnosis]
Self-Injurious Behavior/ep [Epidemiology]
Self-Injurious Behavior/px [Psychology]
Severity Of Illness Index
Sloneem J
Trajectory
-
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/10.1371/journal.pone.0084128" target="_blank" rel="noreferrer noopener">http://doi.org/10.1371/journal.pone.0084128</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
Assessment of sleep in children with mucopolysaccharidosis type III
Publisher
An entity responsible for making the resource available
PLoS ONE
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Actigraphy; Adolescent; Case-Control Studies; Child; Preschool; Female; Humans; Male; Melatonin/me [Metabolism]; Mucopolysaccharidosis III/pp [Physiopathology]; Sleep/ph [Physiology]; Time Factors; JL5DK93RCL (Melatonin); sleep disturbance/disorders; MPSIIIA; MPSIIIB; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Mahon L V; Lomax M; Grant S; Cross E; Hare D J; Wraith J E; Jones S; Bigger B; Langford-Smith K; Canal M
Description
An account of the resource
Sleep disturbances are prevalent in mucopolysaccharidosis Type III (MPS III), yet there is a lack of objective, ecologically valid evidence detailing sleep quantity, quality or circadian system. Eight children with MPS III and eight age-matched typically developing children wore an actigraph for 7-10 days/nights. Saliva samples were collected at three time-points on two separate days, to permit analysis of endogenous melatonin levels. Parents completed a sleep questionnaire and a daily sleep diary. Actigraphic data revealed that children with MPS III had significantly longer sleep onset latencies and greater daytime sleep compared to controls, but night-time sleep duration did not differ between groups. In the MPS III group, sleep efficiency declined, and sleep onset latency increased, with age. Questionnaire responses showed that MPS III patients had significantly more sleep difficulties in all domains compared to controls. Melatonin concentrations showed an alteration in the circadian system in MPS III, which suggests that treatment for sleep problems should attempt to synchronise the sleep-wake cycle to a more regular pattern. Actigraphy was tolerated by children and this monitoring device can be recommended as a measure of treatment success in research and clinical practice.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1371/journal.pone.0084128" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0084128</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).
2014
Actigraphy
Adolescent
Bigger B
Canal M
Case-Control Studies
characteristics
Child
Cross E
Female
Grant S
Hare D J
Humans
JL5DK93RCL (Melatonin)
Jones S
Langford-Smith K
Lomax M
Mahon L V
Male
Melatonin/me [Metabolism]
MPSIIIA
MPSIIIB
Mucopolysaccharidosis III/pp [Physiopathology]
PLoS One
Preschool
sleep disturbance/disorders
Sleep/ph [Physiology]
Time Factors
Trajectory
Wraith J E
-
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.jns.2006.05.054" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jns.2006.05.054</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
Niemann-Pick C disease in Spain: clinical spectrum and development of a disability scale
Publisher
An entity responsible for making the resource available
Journal of the Neurological Sciences
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Adolescent; Adult; Age of Onset; Carrier Proteins/ge [Genetics]; Cerebellar Ataxia/di [Diagnosis]; Cerebellar Ataxia/ep [Epidemiology]; Cerebellar Diseases/di [Diagnosis]; Cerebellar Diseases/ep [Epidemiology]; Child; Preschool; Comorbidity; Disability; Evaluation; Dysarthria/di [Diagnosis]; Dysarthria/ep [Epidemiology]; Female; Genetic Predisposition to Disease/ge [Genetics]; Infant; feeding difficulties; sleep disturbance; tone and motor problems; NPC; tool development; scale development
Creator
An entity primarily responsible for making the resource
Iturriaga C; Pineda M; Fernandez-Valero E M; Vanier M T; Coll M J
Description
An account of the resource
OBJECTIVES: To describe the clinical evolution of Niemann-Pick C disease to identify possible factors involved in the diagnosis and severity of the disease. METHODS: A clinical database and a severity scale was created to evaluate 45 patients diagnosed with Niemann-Pick type C in the last 28 years in Spain. RESULTS: Complete clinical data were obtained from 30 patients, all were confirmed to have mutations in the NPC1 gene. Regarding clinical form, 3 were perinatal, 7 severe infantile, 6 late infantile, 11 juvenile and 3 adult. Biochemical phenotype was classic in 26. Splenomegaly was present in 28 patients (93%) with a wide range of age at detection. The first symptom of neurological disease was clumsiness, followed in 2-4 years by cerebellar signs. Ophthalmoplegia appeared 2-4 years later and became complete 1-2 years after onset. Dysarthria appeared by the time of complete ophthalmoplegia. Diagnosis was made before the onset of neurological signs in patients with the severe infantile form, at the time of onset of cerebellar signs in the late infantile form and complete ophthalmoplegia in late onset forms. CONCLUSIONS: In our series, splenomegaly is present in 96% of patients, even in late onset forms during the first years of life. Clumsiness in children with otherwise normal motor development precedes the onset of ataxia by 2-4 years in Niemann Pick type C. A disability scale could be useful for monitoring evolution, establishing possible phenotypic correlations and evaluating future therapies.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jns.2006.05.054" target="_blank" rel="noreferrer noopener">10.1016/j.jns.2006.05.054</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).
2006
Adolescent
Adult
Age of Onset
Carrier Proteins/ge [Genetics]
cerebellar ataxia/di [Diagnosis]
Cerebellar Ataxia/ep [Epidemiology]
Cerebellar Diseases/di [Diagnosis]
Cerebellar Diseases/ep [Epidemiology]
Child
Coll M J
Comorbidity
Disability
Dysarthria/di [Diagnosis]
Dysarthria/ep [Epidemiology]
Evaluation
feeding difficulties
Female
Fernandez-Valero E M
Genetic Predisposition to Disease/ge [Genetics]
Infant
Iturriaga C
Journal Of The Neurological Sciences
NPC
Pineda M
Preschool
scale development
sleep disturbance
tone and motor problems
tool development
Vanier M T
-
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/10.1111/j.1525-1470.1997.tb00991.x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/j.1525-1470.1997.tb00991.x</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
Constipation in epidermolysis bullosa: successful treatment with a liquid fiber-containing formula
Publisher
An entity responsible for making the resource available
Pediatric Dermatology
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Adolescent Child; Child; Formulated; Humans; Male; Preschool; Constipation/co [Complications]; Constipation/th [Therapy]; Epidermolysis Bullosa/co [Complications]; Female; Food; constipation; Epidermolysis Bullosa; pharmacologic intervention; fiber-containing liquid formula Enrich
Creator
An entity primarily responsible for making the resource
Haynes L; Atherton D; Clayden G
Description
An account of the resource
In epidermolysis bullosa (EB), chronic constipation, painful defecation, and fecal impaction frequently contribute to malnutrition and growth failure. Standard treatments for constipation, such as increased intake of conventional dietary fiber and fluids and/or the use of laxatives and stool softeners, are largely unsuccessful. We evaluated by questionnaire the use of a fiber-containing liquid formula (Enrich) in 20 chronically constipated children with dystrophic EB. All derived substantial improvement in constipation when taking 250 to 750 ml Enrich per day. We recommend that such a fiber-containing food be prescribed for chronic constipation in EB. In cases of fecal impaction, this should be preceded by bowel cleansing.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1525-1470.1997.tb00991.x" target="_blank" rel="noreferrer noopener">10.1111/j.1525-1470.1997.tb00991.x</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).
1997
Adolescent Child
Atherton D
Child
Clayden G
Constipation
Constipation/co [Complications]
Constipation/th [Therapy]
epidermolysis bullosa
Epidermolysis Bullosa/co [Complications]
Female
fiber-containing liquid formula Enrich
Food
Formulated
Haynes L
Humans
Male
Pediatric Dermatology
pharmacologic intervention
Preschool
-
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/10.1097/PEP.0b013e3182351f04" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/PEP.0b013e3182351f04</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
Validation of the Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND)
Publisher
An entity responsible for making the resource available
Pediatric Physical Therapy
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
infant; Pediatrics; Rehabilitation; validity; outcome assessment; child; female; male; disease severity; (health care); atrophies of childhood/diagnosis; child development/physiology; childhood/physiopathology; disability evaluation; humans; motor skills/physiology; natural-history; physical therapy/methods; preschool; psychometrics/methods; severity of illness index; sma; smn2 copy number; spinal muscular; spinal muscular atrophies of; spinal muscular-atrophy; tone and motor problems; SMA1; tool development; scale development; CHOP INTEND
Creator
An entity primarily responsible for making the resource
Glanzman A M; McDermott M P; Montes J; Martens W B; Flickinger J; Riley S; Quigley J; Dunaway S; O'Hagen J; Deng L Y; Chung W K; Tawil R; Darras B T; Yang M; Sproule D; De Vivo D C; Kaufmann P; Finkel R S; Pediatric Neuromuscular Clinical Research; Muscle Study Group
Description
An account of the resource
Purpose: Preliminary validation of the Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND) for motor skill assessment in spinal muscular atrophy type I. Methods: A total of 27 subjects 3 to 260 months old (mean = 49, SD = 69) with spinal muscular atrophy-I were evaluated with the CHOP INTEND. Subjects were evaluated as part of a multicenter natural history study. Results: CHOP INTEND scores and age were significantly correlated (r = -0.51, P = .007; 2 survival of the motor neuron [SMN] 2 gene copies, n = 16, r = -0.60, 3 SMN2 gene copies, n = 9, r = -0.83). Respiratory support and CHOP INTEND scores were correlated (r = -0.74, P <.0001, n = 26). The CHOP INTEND and age regression in patients with 2 copies versus 3 copies of SMN2 approached significance (P = .0711, n = 25). Subjects who required respiratory support scored significantly lower (mean = 15.5, SD = 10.2 vs mean = 31.2, SD = 4.2, P <.0001, n = 27). Correlation with motor unit number estimation and combined motor unit activation were not significant. Conclusion: The CHOP INTEND reflects measures of disease severity and supports continued exploration of the CHOP INTEND. (Pediatr Phys Ther 2011; 23: 322-326)
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/PEP.0b013e3182351f04" target="_blank" rel="noreferrer noopener">10.1097/PEP.0b013e3182351f04</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).
(health care)
2011
atrophies of childhood/diagnosis
Child
Child Development/physiology
childhood/physiopathology
CHOP INTEND
Chung W K
Darras B T
De Vivo D C
Deng L Y
Disability Evaluation
Disease Severity
Dunaway S
Female
Finkel R S
Flickinger J
Glanzman A M
Humans
Infant
Kaufmann P
Male
Martens W B
McDermott M P
Montes J
Motor Skills/physiology
Muscle Study Group
natural-history
O'Hagen J
outcome assessment
Pediatric Neuromuscular Clinical Research
Pediatric Physical Therapy
Pediatrics
physical therapy/methods
Preschool
Psychometrics/methods
Quigley J
Rehabilitation
Riley S
scale development
Severity Of Illness Index
Sma
SMA1
smn2 copy number
spinal muscular
spinal muscular atrophies of
spinal muscular-atrophy
Sproule D
Tawil R
tone and motor problems
tool development
Validity
Yang M
-
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/10.1136/adc.2004.065482" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/adc.2004.065482</a>
Dublin Core
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Title
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Sleep disturbance in Sanfilippo syndrome: a parental questionnaire study
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Treatment Outcome; Infant Newborn; Humans; Adolescent; Child Preschool; Infant; Questionnaires; Age of Onset; Incidence; Behavior Therapy; Melatonin/therapeutic use; Mucopolysaccharidosis III/psychology; Sleep Disorders/epidemiology/etiology/therapy; Q3 Literature Search; child; adult; Adolescent; Adult; Age of Onset; Behavior Therapy; Child; Preschool; Humans; Incidence; Infant; sleep disturbance/disorders; MPS III; trajectory; characteristics; melatonin; benzodiazepines
Creator
An entity primarily responsible for making the resource
Fraser J; Gason A A; Wraith J E; Delatycki M B
Description
An account of the resource
AIMS: To determine the incidence, manifestations, and best management of sleep disturbance in Sanfilippo syndrome (mucopolysaccharidosis (MPS) type III). METHODS: Families were ascertained through the MPS societies of Australasia, the UK, and the USA. Questionnaires were sent by mail and were answered anonymously. Identical questions regarding sleep disturbance were asked about unaffected siblings to provide control data. Sleep disturbance was quantified by a total sleep disturbance score. RESULTS: A total of 141 responses were received; 91.5% of children with Sanfilippo syndrome had sleep disturbance and this was significantly higher than for their unaffected sibs; 77.5% of parents had used medication for this problem, with melatonin and antihistamines being most commonly used. Melatonin and benzodiazepines were reported as the most efficacious. Many different environmental modifications had been employed for this problem and some parents reported success with behavioural therapies. CONCLUSIONS: Sleep disturbance is common, severe, and difficult to manage in Sanfilippo syndrome. Based on the parental responses and its safety profile, melatonin is the first line drug that should be tried. Behavioural therapy should be tried in all with Sanfilippo syndrome and sleep disturbance.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/adc.2004.065482" target="_blank" rel="noreferrer noopener">10.1136/adc.2004.065482</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).
2005
Adolescent
Adult
Age of Onset
Archives of Disease in Childhood
Behavior Therapy
Benzodiazepines
characteristics
Child
Child Preschool
Delatycki M B
Fraser J
Gason A A
Humans
Incidence
Infant
Infant Newborn
melatonin
Melatonin/therapeutic use
MPS III
Mucopolysaccharidosis III/psychology
Preschool
Q3 Scoping Review Results
Questionnaires
Sleep Disorders/epidemiology/etiology/therapy
sleep disturbance/disorders
Trajectory
Treatment Outcome
Wraith J E
-
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.jpedsurg.2005.10.007" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpedsurg.2005.10.007</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
Esophageal strictures in children with recessive dystrophic epidermolysis bullosa: an 11-year experience with fluoroscopically guided balloon dilatation
Publisher
An entity responsible for making the resource available
Journal of Pediatric Surgery
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Adolescent; Barium; Catheterization; Child; Preschool; Epidermolysis Bullosa; Dystrophica/co [Complications]; Esophageal Stenosis/et [Etiology]; Esophageal Stenosis/th [Therapy]; Female; Humans; Male; Retrospective Studies; Treatment Outcome; 24GP945V5T (Barium); feeding difficulties; surgical intervention; fluoroscopically guided balloon dilatation
Creator
An entity primarily responsible for making the resource
Azizkhan R G; Stehr W; Cohen A P; Wittkugel E; Farrell M K; Lucky A W; Hammelman B D; Johnson N D; Racadio J M
Description
An account of the resource
BACKGROUND: Recessive dystrophic epidermolysis bullosa (RDEB) is an inherited blistering skin disorder that is associated with significant esophageal strictures, resulting in dysphagia and nutritional failure. Although endoscopically guided balloon dilatation is a widely used treatment, the use of an endoscope carries the risk of oropharyngeal trauma. To minimize this risk, we have eliminated its use. METHOD: We reviewed the charts of all RDEB patients who underwent balloon dilatation for esophageal strictures between August 1993 and March 2005. Balloon dilatation procedures were performed under anesthesia and with fluoroscopic control. RESULTS: We performed 92 dilatations on 25 RDEB patients. Most patients reported immediate relief of symptoms, rapid recovery, and resumption of adequate food intake within 1 day. The mean interval between dilatations was 1 year. Six patients (24%) have required only 1 dilatation, and 1 of these 6 has had a dilatation-free interval of 25 months. One patient with a history of multiple dilatations has remained dilatation-free for 5 years. No procedure-related complications have occurred. CONCLUSIONS: Fluoroscopically guided balloon dilatation is a gentle, safe, effective, and repeatable technique that should be considered as a first line of treatment.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpedsurg.2005.10.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpedsurg.2005.10.007</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).
2006
24GP945V5T (Barium)
Adolescent
Azizkhan R G
barium
Catheterization
Child
Cohen A P
Dystrophica/co [Complications]
epidermolysis bullosa
Esophageal Stenosis/et [Etiology]
Esophageal Stenosis/th [Therapy]
Farrell M K
feeding difficulties
Female
fluoroscopically guided balloon dilatation
Hammelman B D
Humans
Johnson N D
Journal Of Pediatric Surgery
Lucky A W
Male
Preschool
Racadio J M
Retrospective Studies
Stehr W
surgical intervention
Treatment Outcome
Wittkugel E
-
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/10.1037/0022-006X.46.3.529" target="_blank" rel="noreferrer noopener">http://doi.org/10.1037/0022-006X.46.3.529</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
Behavioral contingencies and self-mutilation in Lesch-Nyhan disease
Publisher
An entity responsible for making the resource available
Journal of Consulting and Clinical Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
1978
Subject
The topic of the resource
Adolescent; Behavior Therapy/mt [Methods]; Child; Preschool; Humans; Lesch-Nyhan Syndrome/px [Psychology]; Lesch-Nyhan Syndrome/th [Therapy]; Male Punishment; Self Mutilation/th [Therapy]; behavioral problems; Lesch-Nyhan syndrome; psychological intervention; aversive stimulation electric shock; positive reinforcement; time-out; self-injury; self-mutilation
Creator
An entity primarily responsible for making the resource
Anderson L; Dancis J; Alpert M
Description
An account of the resource
Lesch-Nyhan syndrome is a rare, sex-linked, recessive disease that is accompanied by severe self-mutilation, especially finger biting. Evidence is presented suggesting that parental response patterns may contribute to the genesis of the self-injurious behavior (SIB). The therapeutic effectiveness of punishment, positive reinforcement of either SIB or non-SIB, and time-out learning paradigms were evaluated in 5 Ss aged 3-13 yrs. Electric skin shock failed to suppress the behavior. Positive reinforcement of non-self-injury and time-out from social reinforcement were consistently and rapidly effective, indicating a complex interaction of genetic and environmental factors in the production of SIB. Elimination or major reductions in incidence of SIB was maintained during follow-up periods of 2 yrs. (19 ref)
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1037/0022-006X.46.3.529" target="_blank" rel="noreferrer noopener">10.1037/0022-006X.46.3.529</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).
1978
Adolescent
Alpert M
Anderson L
aversive stimulation electric shock
Behavior Therapy/mt [Methods]
behavioral problems
Child
Dancis J
Humans
Journal Of Consulting And Clinical Psychology
Lesch-Nyhan syndrome
Lesch-Nyhan Syndrome/px [Psychology]
Lesch-Nyhan Syndrome/th [Therapy]
Male Punishment
positive reinforcement
Preschool
psychological intervention
Self Mutilation/th [Therapy]
self-injury
self-mutilation
time-out
-
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/10.3171/2011.8.PEDS11153" target="_blank" rel="noreferrer noopener">http://doi.org/10.3171/2011.8.PEDS11153</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
Deep brain stimulation in children: experience and technical pearls
Publisher
An entity responsible for making the resource available
Journal of Neurosurgery - Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Adolescent; Adult; Age; Factors Brain/pa [Pathology]; Brain/ra [Radiography]; Child; Preschool; Deep Brain Stimulation/ae [Adverse Effects]; Deep Brain Stimulation/mt [Methods]; Dystonia/pp [Physiopathology]; Dystonia/th [Therapy]; Female; Follow-Up Studies; Humans; Magnetic Resonance Imaging; Male; Movement; Retrospective Studies; Tomography; X-Ray Computed Treatment Outcome; tone and motor problems; Glutaric acidemia type I; Lesch-Nyhan syndrome; deep brain stimulation; secondary dystonia
Creator
An entity primarily responsible for making the resource
Air E L; Ostrem J L; Sanger T D; Starr P A
Description
An account of the resource
OBJECT: Deep brain stimulation (DBS) is an established technique for the treatment of several movement disorders in adults. However, the technical approach, complications, and results of DBS in children have not been well documented. METHODS: A database of DBS implantations performed at a single institution, prospectively established in 1998, was reviewed for patients who received DBS prior to the age of 18. Diagnoses, surgical technique, and complications were noted. Outcomes were assessed using standard rating scales of neurological function. RESULTS: Of 815 patients undergoing DBS implantation over a 12-year period, 31 were children (mean age at surgery 13.2 years old, range 4-17 years old). Diagnoses included the following: DYT1 primary dystonia (autosomal dominant, Tor1ADELTAGAG mutation, 10 cases), non-DYT1 primary dystonia (3 cases), secondary dystonia (11 cases), neurodegeneration with brain iron accumulation (NBIA, 3 cases), levodopa-responsive parkinsonism (2 cases), Lesch-Nyhan disease (1 case), and glutaric aciduria Type 1 (1 case). Six children ages 15-17 years old underwent awake microelectrode-guided surgery. For 25 children operated under general anesthesia, the surgical technique evolved from microelectrode-guided surgery to image-guided surgeries using real-time intraoperative MR imaging or CT for lead location confirmation. Complications included 5 hardware infections, all in children younger than 10 years old. At 1 year after implantation, patients with DYT1 dystonia had a mean improvement in the Burke-Fahn-Marsden Dystonia Rating Scale movement subscore of 75%, while those with secondary dystonia had only small improvements. Outcomes in the 3 children with NBIA were disappointing. CONCLUSIONS: Results of DBS in children with primary and secondary dystonias were similar to those in adults, with excellent results for DYT1 dystonia in children without fixed orthopedic deformity and much more modest results in secondary dystonia. In contrast to reported experience in adults with NBIA, these results in children with NBIA were poor. Infection risk was highest in the youngest patients.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3171/2011.8.PEDS11153" target="_blank" rel="noreferrer noopener">10.3171/2011.8.PEDS11153</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).
2011
Adolescent
Adult
Age
Air E L
Brain/ra [Radiography]
Child
deep brain stimulation
Deep Brain Stimulation/ae [Adverse Effects]
Deep Brain Stimulation/mt [Methods]
Dystonia/pp [Physiopathology]
Dystonia/th [Therapy]
Factors Brain/pa [Pathology]
Female
Follow-up Studies
Glutaric acidemia type I
Humans
Journal of Neurosurgery - Pediatrics
Lesch-Nyhan syndrome
Magnetic Resonance Imaging
Male
Movement
Ostrem J L
Preschool
Retrospective Studies
Sanger T D
secondary dystonia
Starr P A
Tomography
tone and motor problems
X-Ray Computed Treatment Outcome
-
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
November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1177/1049909117739852" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909117739852</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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Unexpected Survivors: Children With Life-Limiting Conditions of Uncertain Prognosis
Publisher
An entity responsible for making the resource available
American Journal of Hospice & Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Congenital Abnormalities/mo [Mortality];Critical Illness/mo [Mortality];Palliative Care/sn [Statistics & Numerical Data];Survivors/sn [Statistics & Numerical Data];Child;Cohort Studies;Female;Humans;Male;North Carolina;Preschool;Prognosis;Retrospective Studies;Survivorship
Creator
An entity primarily responsible for making the resource
Nageswaran S;Hurst A;Radulovic A
Description
An account of the resource
OBJECTIVE: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of children with life-limiting illnesses who survived longer than the expectations of health-care providers. STUDY DESIGN: This is a retrospective cohort study conducted in a tertiary-care children's hospital in North Carolina. "Unexpected survivors," defined as children who survived despite a prognosis of imminent death or significantly longer than prognosticated by health-care providers, were identified from among 349 children enrolled in a pediatric palliative care program between March 2008 and October 2012. Children's clinical courses were followed until September 2015 or their death. RESULTS: Eighteen (5%) children were identified as unexpected survivors; 17 (10 girls and 7 boys) were included. Congenital anomalies were the most common diagnoses. Neonatal intensive care unit was the most frequent setting of prognostication. Thirteen children used some form of medical technology at the time of prognostication. Eleven children received hospice services. Eight died during the observation period but survived significantly longer than expected (median survival time 1.5 years), and 9 survived beyond the observation period (median survival time 5.9 years). CONCLUSIONS: Unexpected survivors are a small group of children with life-limiting conditions. Clinicians should be aware of the possibility of prognostic inaccuracy, able to communicate prognostic uncertainty to parents, and engage supportive services when prognosticating poor survival. Prospective studies are needed to understand outcomes of children with life-limiting illnesses of uncertain prognosis.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909117739852" target="_blank" rel="noreferrer noopener">10.1177/1049909117739852</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).
2018
American Journal of Hospice & Palliative Medicine
Child
Cohort Studies
Congenital Abnormalities/mo [Mortality]
Critical Illness/mo [Mortality]
Female
Humans
Hurst A
Male
Nageswaran S
North Carolina
November 2018 List
Palliative Care/sn [Statistics & Numerical Data]
Preschool
Prognosis
Radulovic A
Retrospective Studies
Survivors/sn [Statistics & Numerical Data]
Survivorship
-
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
November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1177/1049909117743474" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909117743474</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
Life-Sustaining Treatment Status at the Time of Death in a Japanese Pediatric Intensive Care Unit
Publisher
An entity responsible for making the resource available
American Journal of Hospice & Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
decision making;Intensive Care Units;Life Support Care;Terminal Care sn [Statistics & Numerical Data];Adolescent;Artificial;Brain Death di [Diagnosis];Child;Female;Humans;Length of Stay;Life Support Care;Male;Pediatric sn [Statistics & Numerical Data];Preschool;Respiration;Resuscitation Orders;Retrospective Studies;Terminal Care px [Psychology];Time Factors;Withholding Treatment
Creator
An entity primarily responsible for making the resource
Suzuki F;Takeuchi M;Tachibana K;Isaka K;Inata Y;Kinouchi K
Description
An account of the resource
BACKGROUND: Substantial variability exists among countries regarding the modes of death in pediatric intensive care units (PICUs). However, there is limited information on end-of-life care in Japanese PICUs. Thus, this study aimed to elucidate the characteristics of end-of-life care practice for children in a Japanese PICU. METHODS: We examined life-sustaining treatment (LST) status at the time of death based on medical chart reviews from 2010 to 2014. All deaths were classified into 3 groups: limitation of LST (limitation group, death after withholding or withdrawal of LST or a do not attempt resuscitation order), no limitation of LST (no-limitation group, death following failed resuscitation attempts), or brain death (brain death group). RESULTS: Of the 62 patients who died, 44 (71%) had limitation of LST, 18 (29%) had no limitation of LST, and none had brain death. In the limitation group, the length of PICU stay was longer than that in the no-limitation group (13.5 vs 2.5 days; P = .01). The median time to death after the decision to limit LST was 2 days (interquartile range: 1-5.5 days), and 94% of the patients were on mechanical ventilation at the time of death in the limitation group. CONCLUSIONS: Although limiting LST was a common practice in end-of-life care in a Japanese PICU, a severe limitation of LST such as withdrawal from the ventilator was hardly practiced, and a considerable LST was still provided at the time of death.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909117743474" target="_blank" rel="noreferrer noopener">10.1177/1049909117743474</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).
2018
Adolescent
American Journal of Hospice & Palliative Medicine
Artificial
Brain Death di [Diagnosis]
Child
Decision Making
Female
Humans
Inata Y
Intensive Care Units
Isaka K
Kinouchi K
Length Of Stay
Life Support Care
Male
November 2018 List
Pediatric sn [Statistics & Numerical Data]
Preschool
Respiration
Resuscitation Orders
Retrospective Studies
Suzuki F
Tachibana K
Takeuchi M
Terminal Care px [Psychology]
Terminal Care sn [Statistics & Numerical Data]
Time Factors
Withholding Treatment
-
Dublin Core
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Title
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September 2018 List
Text
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October 2018 List
URL Address
<a href="http://doi.org/10.1186/s12904-018-0361-x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-018-0361-x</a>
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Title
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Intranasal fentanyl for respiratory distress in children and adolescents
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
2018
Subject
The topic of the resource
Palliative Care; Infant; Preschool; Adolescence; Child; Descriptive Statistics; Human; Administration; Record Review; Pediatric Care; Fentanyl Administration and Dosage; Fentanyl Adverse Effects; Fentanyl Therapeutic Use; Treatment Outcomes; Acute Drug Therapy; Intranasal; Respiratory Distress Syndrome
Creator
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Pieper L; Wager J; Zernikow B
Description
An account of the resource
Respiratory distress is one of the most common and frightening symptoms of children with life-limiting conditions. Because treatment of the underlying cause is frequently impossible or insufficient, in many children, symptomatic treatment is warranted. The purpose of this study was to describe the circumstances of the use of intranasal fentanyl in an acute attack of respiratory distress (AARD) in children receiving palliative care, as well as to describe outcomes and adverse events after its use. Methods Children and adolescents treated in a pediatric palliative unit or attended by a specialized home care team between 2010 and 2016 were included in this study. A retrospective chart review was conducted of those who were treated with intranasal fentanyl for an AARD. Results During the study period 16 children (0.5–18.6 years) with various life-limiting conditions were treated with intranasal fentanyl for AARD. In total, 70 AARDs were analyzed. In 74% of all AARDs, a single dose of intranasal fentanyl was used. Frequent causes for an AARD were excessive secretions and acute respiratory infection. The median starting dose of intranasal fentanyl was 1.5 μg/kg body weight. Labored breathing (96%), tachypnea (79%) and related suffering (97%) improved after treatment. An adverse event occurred in one child. Conclusions Intranasal fentanyl may be a safe and effective medication for the treatment of acute attacks of respiratory distress in children with life-limiting conditions. However, prospective studies with larger sample sizes and a control group are needed to validate these findings.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-018-0361-x" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0361-x</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.
2018
Acute Drug Therapy
Administration
Adolescence
BMC Palliative Care
Child
Descriptive Statistics
Fentanyl Administration and Dosage
Fentanyl Adverse Effects
Fentanyl Therapeutic Use
Human
Infant
Intranasal
October 2018 List
Palliative Care
Pediatric Care
Pieper L
Preschool
Record Review
Respiratory Distress Syndrome
September 2018 List
Treatment Outcomes
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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September 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1136/bmjopen-2017-018266" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjopen-2017-018266</a>
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Title
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The journey through care: study protocol for a longitudinal qualitative interview study to investigate the healthcare experiences and preferences of children and young people with life-limiting and life-threatening conditions and their families in the West Midlands, UK
Publisher
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BMJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Family/px [Psychology]; Palliative Care/es [Ethics]; Palliative Care/mt [Methods]; Patient Preference/px [Psychology]; Adolescent; Child; Female; Humans; Longitudinal Studies; Male; Preschool; Qualitative Research; Quality of Health Care/og [Organization & Administration]; Research Design; United Kingdom
Creator
An entity primarily responsible for making the resource
Mitchell S; Slowther AM; Coad J; Dale J
Description
An account of the resource
INTRODUCTION: The number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their conditions are often complex and highly unpredictable. Palliative care is advocated for people with life-limiting and life-threatening conditions, but these services for children are highly variable in terms of availability and scope. Little is known about the lived experiences and preferences of children and their families in terms of the palliative care that they do, or do not, receive. This study aims to produce an in-depth insight into the experiences and preferences of such children and families in order to develop recommendations for the future provision of services. The study will be carried out in the West Midlands, UK. METHODS AND ANALYSIS: A qualitative study comprising longitudinal interviews over a 12-month period with children (aged 5-18 years) living with life-limiting or life-threatening conditions and their family members. Data analysis will start with thematic analysis, followed by narrative and cross-case analysis to examine changing experiences and preferences over time, at the family level and within the wider healthcare system. Patient and public involvement (PPI) has informed the design and conduct of the study. Findings will be used to develop recommendations for an integrated model of palliative care for children in partnership with the patient and public involvement (PPI) group. ETHICS AND DISSEMINATION: Ethical approval was granted in September 2016 by the National Health Service Health Research Authority (IRAS ID: 196816, REC reference: 16/WM/0272). Findings will be of immediate relevance to healthcare providers, policy-makers, commissioners and voluntary sector organisations in the UK and internationally. Reports will be prepared for these audiences, as well as for children and their families, alongside academic outputs.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjopen-2017-018266" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2017-018266</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.
2018
Adolescent
Bmj Open
Child
Coad J
Dale J
Family/px [psychology]
Female
Humans
Longitudinal Studies
Male
Mitchell S
October 2018 List
Palliative Care/es [Ethics]
Palliative Care/mt [methods]
Patient Preference/px [Psychology]
Preschool
Qualitative Research
Quality of Health Care/og [Organization & Administration]
Research Design
September 2018 List
Slowther AM
United Kingdom
-
Dublin Core
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Title
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September 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1177/1540415316670900" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1540415316670900</a>
Dublin Core
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Title
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End-of-Life Care for Hispanic Children: A Study of California Medicaid Beneficiaries
Publisher
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Hispanic Health Care International
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Emergency Service; Hispanic Americans; Hospice Care/ut [Utilization]; Hospices/ut [Utilization]; Hospitalization; Palliative Care/ut [Utilization]; Terminal Care/mt [Methods]; Adolescent; California; Cardiovascular Diseases/mo [Mortality]; Child; Congenital Abnormalities/mo [Mortality]; Delivery of Health Care; Female; Health Services Accessibility; Hospital/ut [Utilization]; Humans; Infant; Male; Medicaid; Neoplasms/mo [Mortality]; Policy; Preschool; United States; Young Adult
Creator
An entity primarily responsible for making the resource
Lindley LC; Trujillo LV
Description
An account of the resource
INTRODUCTION: More than 8,000 Hispanic children die annually in the United States; yet little is known about the end-of-life care utilized. The purpose of this study was to examine the children and family characteristics associated with end-of-life care for Hispanic children. METHOD: A sample of 370 Hispanic children was created, using the 2009-2010 California Medicaid data. The relationship between child and family characteristics and end-of-life care utilization (i.e., hospice enrollment, emergency room utilization, hospital admissions) was analyzed using multivariate regression. RESULTS: Pediatric hospice accessibility (p < .05), palliative care policy (p < .01), congenital anomalies (p < .01), and cardiovascular conditions (p < .01) were related to hospice enrollment. Usual source of care (p < .001), functional status (p < .001), palliative care policy (p < .01), and private insurance (p < .01) were associated with emergency room utilization, while usual source of care (p < .001), cancer (p < .001), and disability status (p < .01) corresponded with hospital admissions. CONCLUSION: Nursing practices aimed at engaging Hispanic families in their community are critical to end-of-life care utilization for Hispanic children.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1540415316670900" target="_blank" rel="noreferrer noopener">10.1177/1540415316670900</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.
2016
Adolescent
California
Cardiovascular Diseases/mo [Mortality]
Child
Congenital Abnormalities/mo [Mortality]
Delivery of Health Care
Emergency Service
Female
Health Services Accessibility
Hispanic Americans
Hispanic Health Care International
Hospice Care/ut [Utilization]
Hospices/ut [Utilization]
Hospital/ut [Utilization]
Hospitalization
Humans
Infant
Lindley LC
Male
Medicaid
Neoplasms/mo [mortality]
October 2018 List
Palliative Care/ut [Utilization]
Policy
Preschool
September 2018 List
Terminal Care/mt [methods]
Trujillo LV
United States
Young Adult
-
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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October 2018 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
September 2018 List
URL Address
<a href="http://doi.org/10.1186/s12904-018-0347-8" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1186/s12904-018-0347-8</a>
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Title
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A qualitative study of health care professionals’ views and experiences of paediatric advance care planning
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
2018
Subject
The topic of the resource
Adolescence; Advance Care Planning; Attitude of Health Personnel; Child; Community -- England; Conversation; Death; Documentation; England; Family Attitudes; Hospices -- England; Hospital; Hospitals; Human; Infant; Medical Staff; Multidisciplinary Care Team; Newborn; Palliative Care; Pediatric Care -- Psychosocial Factors; Preschool; Qualitative Studies; Semi-Structured Interview; Terminal Care; Thematic Analysis; Time Factors
Creator
An entity primarily responsible for making the resource
Jack BA; Mitchell TK; O'Brien MR; Silverio SA; Knighting K
Description
An account of the resource
Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care professionals, focusing on exploring what their future wishes are; and the development of an advance care plan document. However, in paediatric and neonatal settings, there has been little research to demonstrate how advance care planning conversations take place. This study explored health care professionals’ views and experiences of paediatric advance care planning in hospitals, community settings and hospices. Methods A qualitative methodology was employed using purposive sampling of health care professionals involved in the end-of-life care for children aged 0–18 years known to the hospital palliative care team, and had died at least three months before, but less than 18 months prior to the study. Ethics committee approval was obtained for the study. Located in the North of England, the study involved three hospitals, a children’s hospice, and community services. Data were collected using semi-structured, digitally recorded, telephone interviews. All interviews were transcribed verbatim and subjected to thematic analysis. Results Twenty-one health care professionals participated, including generalist paediatric staff as well as specialist palliative care staff. Two themes were generated from the study: The timing of planning conversations, including waiting for the relationship with the family to form; the introduction of parallel planning; avoiding a crisis situation. Secondly, supporting effective conversations around advance care planning, including where to have the conversation; introducing the conversation; and how to approach the topic encompassing the value of advance care planning and documentation for families. Conclusion The timing of when to start the advance care planning conversations remains an issue for health care professionals. The value of doing it in stages and considering the environment where the conversations are held was noted. Timely planning was seen as vital to avoid difficult conversations at a crisis point and for co-ordination of care. Good advance care planning is to provide the best person-centred care for the child and experience for the family.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-018-0347-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0347-8</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).
2018
Adolescence
Advance Care Planning
Attitude Of Health Personnel
BMC Palliative Care
Child
Community -- England
Conversation
Death
Documentation
England
Family Attitudes
Hospices -- England
Hospital
Hospitals
Human
Infant
Jack BA
Knighting K
Medical Staff
Mitchell TK
Multidisciplinary Care Team
Newborn
O'Brien MR
Palliative Care
Pediatric Care -- Psychosocial Factors
Preschool
Qualitative Studies
Semi-Structured Interview
September 2018 List
Silverio SA
Terminal Care
Thematic Analysis
Time Factors
-
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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October 2018 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
September 2018 List
URL Address
<a href="http://doi.org/10.1016/j.ymgme.2017.04.007" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1016/j.ymgme.2017.04.007</a>
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Title
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Hospitalizations for mitochondrial disease across the lifespan in the U.S
Publisher
An entity responsible for making the resource available
Molecular genetics and metabolism
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Hospitalization/sn [Statistics & Numerical Data]; Mitochondrial Diseases/ep [Epidemiology]; Adolescent; Adult; Child; Cost of Illness; Cross-Sectional Studies; Databases; Factual; Female; Health Services Research; Hospital Mortality; Hospitalization/ec [Economics]; Humans; Infant; Longitudinal Studies; Male; Middle Aged; Mitochondrial Diseases/ec [Economics]; Mitochondrial Diseases/mo [Mortality]; Preschool; United States/ep [Epidemiology]; Young Adult
Creator
An entity primarily responsible for making the resource
McCormack SE; Xiao Rui; Kilbaugh TJ; Karlsson M; Ganetzky RD; Cunningham ZZ; Goldstein A; Falk MJ; Damrauer SM
Description
An account of the resource
IMPORTANCE: Mitochondrial disease is being diagnosed with increasing frequency. Although children with mitochondrial disease often have severe, life-limiting illnesses, many survive into adulthood. There is, however, limited information about the impact of mitochondrial disease on healthcare utilization in the U.S. across the lifespan., OBJECTIVES: To describe the characteristics of inpatient hospitalizations related to mitochondrial disease in the U.S., to identify patient-level clinical factors associated with in-hospital mortality, and to estimate the burden of hospitalizations on individual patients., DESIGN: Cross-sectional and longitudinal observational studies., SETTING: U.S. hospitals., PARTICIPANTS: Individuals with hospital discharges included in the triennial Healthcare Cost and Utilization Project (HCUP) Kids Inpatient Database (KID) and the National Inpatient Sample (NIS) in 2012 (cross-sectional analysis); individuals with hospital discharges included in the HCUP California State Inpatient Database from 2007 to 2011, inclusive (longitudinal analysis)., EXPOSURE: Hospital discharge associated with a diagnosis of mitochondrial disease., MAIN OUTCOME MEASURES: Total number and rate of hospitalizations for individuals with mitochondrial disease (International Classification of Diseases, 9th revision, Clinical Modification code 277.87, disorder of mitochondrial metabolism); in-hospital mortality., RESULTS: In the 2012, there were approximately 3200 inpatient pediatric hospitalizations (1.9 per 100,000 population) and 2000 inpatient adult hospitalizations (0.8 per 100,000 population) for mitochondrial disease in the U.S., with associated direct medical costs of $113million. In-hospital mortality rates were 2.4% for children and 3.0% for adults, far exceeding population averages. Higher socioeconomic status was associated with both having a diagnosis of mitochondrial disease and with higher in-hospital mortality. From 2007 to 2011 in California, 495 individuals had at least one admission with a diagnosis of mitochondrial disease. Patients had a median of 1.1 hospitalizations (IQI, 0.6-2.2) per calendar year of follow-up; infants under 2y were hospitalized more frequently than other age groups. Over up to five years of follow up, 9.9% of participants with any hospitalization for mitochondrial disease were noted to have an in-hospital death., CONCLUSIONS AND RELEVANCE: Hospitalizations for pediatric and adult mitochondrial diseases are associated with serious illnesses, substantial costs, and significant patient time. Identification of opportunities to prevent or shorten such hospitalizations should be the focus of future studies.Copyright © 2017 Elsevier Inc. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ymgme.2017.04.007" target="_blank" rel="noreferrer noopener">10.1016/j.ymgme.2017.04.007</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).
2017
Adolescent
Adult
Child
Cost Of Illness
Cross-sectional Studies
Cunningham ZZ
Damrauer SM
Databases
Factual
Falk MJ
Female
Ganetzky RD
Goldstein A
Health Services Research
Hospital Mortality
Hospitalization/ec [Economics]
Hospitalization/sn [Statistics & Numerical Data]
Humans
Infant
Karlsson M
Kilbaugh TJ
Longitudinal Studies
Male
McCormack SE
Middle Aged
Mitochondrial Diseases/ec [Economics]
Mitochondrial Diseases/ep [Epidemiology]
Mitochondrial Diseases/mo [Mortality]
Molecular Genetics and Metabolism
Preschool
September 2018 List
United States/ep [Epidemiology]
Xiao Rui
Young Adult
-
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 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1016/j.acap.2017.02.010" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.acap.2017.02.010</a>
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Title
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Experts' Perspectives Toward a Population Health Approach for Children With Medical Complexity
Publisher
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Academic Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Creator
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Barnert ES; Coller R J; Nelson BB; Thompson LR; Chan V; Padilla C; Klitzner TS; Szilagyi M; Chung P J
Identifier
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<a href="http://doi.org/10.1016/j.acap.2017.02.010" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2017.02.010</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).
Description
An account of the resource
OBJECTIVE: Because children with medical complexity (CMC) display very different health trajectories, needs, and resource utilization than other children, it is unclear how well traditional conceptions of population health apply to CMC. We sought to identify key health outcome domains for CMC as a step toward determining core health metrics for this distinct population of children. METHODS: We conducted and analyzed interviews with 23 diverse national experts on CMC to better understand population health for CMC. Interviewees included child and family advocates, health and social service providers, and research, health systems, and policy leaders. We performed thematic content analyses to identify emergent themes regarding population health for CMC. RESULTS: Overall, interviewees conveyed that defining and measuring population health for CMC is an achievable, worthwhile goal. Qualitative themes from interviews included: 1) CMC share unifying characteristics that could serve as the basis for population health outcomes; 2) optimal health for CMC is child specific and dynamic; 3) health of CMC is intertwined with health of families; 4) social determinants of health are especially important for CMC; and 5) measuring population health for CMC faces serious conceptual and logistical challenges. CONCLUSIONS: Experts have taken initial steps in defining the population health of CMC. Population health for CMC involves a dynamic concept of health that is attuned to individual, health-related goals for each child. We propose a framework that can guide the identification and development of population health metrics for CMC.
2017
Academic Pediatrics
Attitude Of Health Personnel
Barnert ES
Chan V
Child
Child Health Services/organization & administration
Chung P J
Coller R J
Disabled Children/psychology
Female
Health Personnel/psychology
Humans
Interviews As Topic
July 2018 List
Klitzner TS
Male
Needs Assessment
Nelson BB
Padilla C
Patient-centered Care
Population Health
Preschool
Szilagyi M
Thompson LR
Treatment Outcome
-
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 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1038/jp.2017.30" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/jp.2017.30</a>
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Title
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Children's outcomes at 2-year follow-up after 4 years of structured multi-professional medical-ethical decision-making in a neonatal intensive care unit
Publisher
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Journal of Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Creator
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de Boer JC; Gennissen L; Williams M; van Dijk M; Tibboel D; Reiss I; Naghib S; Sol J
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<a href="http://doi.org/10.1038/jp.2017.30" target="_blank" rel="noreferrer noopener">10.1038/jp.2017.30</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).
Description
An account of the resource
OBJECTIVE: We reviewed our decisions about continuation/withdrawal of life-sustaining treatments in a group of critically ill newborns who were discussed in structured medical ethical decision-making meetings, and provide the surviving children's outcomes at 2-year follow-up. STUDY DESIGN: In an explorative observational study, 61 cases were evaluated. The children involved had been discussed in such a structured way from 2009 to 2012 in a level III-D neonatal intensive care unit. RESULTS: Decisions made were: full treatment (n=6), earlier restriction cancelled (n=3), treatment restriction (n=30) and palliative care (n=22). Parents of six children disagreed with the decision proposed. Thirteen (54%) of the 24 children who survived (39%) had moderate to severe neurological problems; 8 (33%) had additional sequelae; only one 2-year-old child was healthy. CONCLUSIONS: Decisions made varied to a large extent. The poor outcomes should be disseminated among decision makers. Future studies must explore new ways to improve outcome prediction, extend follow-up periods and consider what living with severe handicaps really means for both child and family.
2017
Child
Clinical Decision-Making/ethics
Critical Illness/mortality/therapy
de Boer JC
Female
Follow-up Studies
Gennissen L
Humans
Infant
Intensive Care Units
Journal Of Perinatology
July 2018 List
Male
Naghib S
Neonatal
Netherlands
Newborn
Palliative Care
Parents/psychology
Preschool
Prospective Studies
Reiss I
Sol J
Survival Analysis
Tibboel D
van Dijk M
Williams M
Withholding Treatment/ethics/standards
-
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 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1017/S1478951511001027" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/S1478951511001027</a>
Dublin Core
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Title
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Cultural and religious considerations in pediatric palliative care
Publisher
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Palliative & Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Creator
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Wiener L; McConnell DG; Latella L; Ludi E
Identifier
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<a href="http://doi.org/10.1017/S1478951511001027" target="_blank" rel="noreferrer noopener">10.1017/S1478951511001027</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).
Description
An account of the resource
OBJECTIVE: A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care. SIGNIFICANCE OF RESULTS: The review of the literature provides insight into the influence of religion and how culture informs lifestyle and shapes the experiences of illness, pain, and end-of-life care. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. Cultural traditions are dynamic, never static, and cannot be generalized to all families. Guidelines to aid in approaches to palliative care are provided, and providers are encouraged to define these important differences for each family under their care.
2013
Attitude to Death/eh Ethnology
Child
Cultural Diversity
Decision Making
Humans
Infant
July 2018 List
Latella L
Ludi E
McConnell DG
Newborn
Palliative & Supportive Care
Palliative Care
Pediatrics
Preschool
Religion and Medicine
Spirituality
Terminal Care
Wiener L
-
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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April 2018 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
April 2018 List
URL Address
<a href="http://doi.org/10.1177/1049909117700101" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909117700101</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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Speaking a Different Language: A Qualitative Analysis Comparing Language of Palliative Care and Pediatric Intensive Care Unit Physicians
Publisher
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American Journal of Hospice & Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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Child; Communication; Critical Care; Female; Human; Inpatients; Intensive Care Units; Language; Male; Palliative Care; Pediatric; Physicians; Support; Preschool; Retrospective Design; Descriptive Statistics; In Infancy and Childhood; Audiorecording; child; human; female; male; Content Analysis; Field Notes; Fisher's Exact Test; Funding Source; Kappa Statistic; Mann-Whitney U Test; Patient-Family Conferences; Record Review; Psychosocial
Creator
An entity primarily responsible for making the resource
Ciriello AG; Dizon Zoelle B; October Tessie W
Description
An account of the resource
Background: Family conferences in the pediatric intensive care unit (ICU) often include palliative care (PC) providers. We do not know how ICU communication differs when the PC team is present. Aim: To compare language used by PC team and ICU physicians during family conferences. Design: A retrospective cohort review of ICU family conferences with and without the PC team. Setting: Forty-four bed pediatric ICU in a tertiary medical center. Participants: Nine ICU physicians and 4 PC providers who participated in 18 audio-recorded family conferences.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909117700101" target="_blank" rel="noreferrer noopener">10.1177/1049909117700101</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).
2017
American Journal of Hospice & Palliative Medicine
April 2018 List
Audiorecording
Child
Ciriello AG
Communication
Content Analysis
Critical Care
Descriptive Statistics
Dizon Zoelle B
Female
field notes
Fisher's Exact Test
Funding Source
Human
In Infancy and Childhood
Inpatients
Intensive Care Units
Kappa Statistic
Language
Male
Mann-Whitney U Test
October Tessie W
Palliative Care
Patient-Family Conferences
Pediatric
Physicians
Preschool
psychosocial
Record Review
Retrospective Design
Support
-
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
April 2018 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
April 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2016.11.007" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2016.11.007</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
Parental Concordance Regarding Problems and Hopes for Seriously Ill Children: A Two-Year Cohort Study
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
pediatrics; Attitude to Health; Adolescent; Adult; Attitude to Death; Child; Cohort Studies; Female; Health Surveys; Humans; Infant; Longitudinal Studies; Male; Middle Aged; Only Child; Parents/ psychology; Pediatrics; Prevalence; Quality of Life/ psychology; Terminal Care/ psychology; Young Adult; decision-making; problems; Parent-Child Relations; Hope; Preschool; serious illness; child; female; male; young adult; adult; Child Health/statistics & numerical data; Critical Illness/epidemiology/ psychology; hopes; parental concordance; Philadelphia/epidemiology
Creator
An entity primarily responsible for making the resource
Hill DL; Nathanson PG; Fenderson RM; Carroll KW; Feudtner C
Description
An account of the resource
CONTEXT: Parents of a seriously ill child may have different concerns and hopes for their child, and these concerns and hopes may change over time. OBJECTIVES: In a mixed-method prospective cohort of parental dyads of children with serious illness, to describe the major problems and hopes perceived for their child, examine the degree of concordance between parents, and assess whether prevalence and concordance change over time. METHODS: Eighty-four parents (42 dyads) of seriously ill children reported the major problems and hopes for their children at baseline. Thirty-two parents (16 dyads) answered the same questions at 24 months. Problems and hopes were classified into nine domains. Observed concordance was calculated between parents on each domain. Data for parents of 11 children who died are reported separately. RESULTS: The most common major problem and hope domains at baseline were physical body, quality of life, future health and well-being, and medical care. Parental dyads demonstrated a moderately high percentage of concordance (69%) regarding reported problem domains and a slightly lower percentage of concordance on hopes (61%), with higher concordance for more common domains. Domain prevalence and concordance changed considerably at 24 months. Parents of children who later died showed markedly different patterns of domain prevalence and more extreme patterns of concordance. CONCLUSION: Parents of children with serious illness may have different perspectives regarding major problems and hopes, and these perspectives change over time. Parents of sicker children are more likely to be in either complete agreement or disagreement regarding the problems and hopes they identify.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2016.11.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2016.11.007</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).
2017
Adolescent
Adult
April 2018 List
Attitude To Death
Attitude To Health
Carroll KW
Child
Child Health/statistics & numerical data
Cohort Studies
Critical Illness/epidemiology/ psychology
Decision-making
Female
Fenderson RM
Feudtner C
Health Surveys
Hill DL
Hope
hopes
Humans
Infant
Journal of Pain and Symptom Management
Longitudinal Studies
Male
Middle Aged
Nathanson PG
Only Child
Parent-child Relations
parental concordance
Parents/ Psychology
Pediatrics
Philadelphia/epidemiology
Preschool
Prevalence
problems
Quality of Life/ psychology
Serious Illness
Terminal Care/ psychology
Young Adult