1
40
21
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Title
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April 2024 List
Text
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April List 2024
URL Address
<a href="http://doi.org/10.3390/children11020234" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children11020234</a>
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The Use of Cannabinoids in Pediatric Palliative Care-A Retrospective Single-Center Analysis
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
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child; Palliative Care; diagnosis; article; female; human; male; retrospective study; Cannabinoids; spasticity; epilepsy; quality of life; outpatient; palliative therapy; pain; anxiety; clinical article; school child; human tissue; side effect; adolescent; therapy; drug dose increase; drug combination; drug therapy; nausea; adverse drug reaction; pediatric patient; loss of appetite; paresis; restlessness; special situation for pharmacovigilance; cannabinoid; add on therapy; decreased appetite
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Tagsold D; Toni I; Trollmann R; Woelfle J; Gravou-Apostolatou C
Description
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This data analysis aimed to systematically analyze a pediatric patient population with a life-limiting disease who were administered cannabinoids. It was a retrospective single-center analysis of patients under supervision of the specialized outpatient pediatric palliative care (SOPPC) team at the Department of Pediatrics and Adolescent Medicine of the Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU). Thirty-one patients with a primary diagnosis of neuropediatric, oncologic, metabolic, and cardiologic categories were included. The indications we identified were spasticity, pain, restlessness, anxiety, loss of appetite, epilepsy, and paresis. Certain aspects of quality of life were improved for 20 of 31 patients (64.5%). For nine patients (29%), no improvement was detected. No conclusions could be drawn for two patients (6.5%). Adverse events were reported for six of the thirty-one patients (19.4%). These were graded as mild, including symptoms such as restlessness, nausea, and behavioral issues. We detected no clinically relevant interactions with other medications. We collected fundamental data on the use of cannabinoids by pediatric palliative patients. Cannabinoids are now frequently administered in pediatric palliative care. They seem to be safe to use and should be considered an add-on therapy for other drug regimens.
Identifier
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<a href="http://doi.org/10.3390/children11020234" target="_blank" rel="noreferrer noopener">10.3390/children11020234</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).
2024
add on therapy
Adolescent
Adverse Drug Reaction
anxiety
April List 2024
Article
Cannabinoid
Cannabinoids
Child
Children
Clinical Article
decreased appetite
Diagnosis
drug combination
drug dose increase
Drug Therapy
Epilepsy
Female
Gravou-Apostolatou C
Human
Human Tissue
Loss Of Appetite
Male
Nausea
Outpatient
Pain
Palliative Care
Palliative Therapy
paresis
pediatric patient
Quality Of Life
restlessness
Retrospective Study
School Child
Side Effect
Spasticity
special situation for pharmacovigilance
Tagsold D
Therapy
Toni I
Trollmann R
Woelfle J
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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October 2023 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 List 2023
URL Address
<a href="http://doi.org/10.3389/fped.2023.1167757" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fped.2023.1167757</a>
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Title
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A qualitative exploration of parental perspectives on quality of care for children with serious illnesses
Publisher
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Frontiers in Pediatrics
Date
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2023
Subject
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Child; child; article; human; caregiver; qualitative research; perception; palliative therapy; pediatrics; conceptual framework; health care quality; total quality management; Singapore; Only Child; health care organization; human tissue; semi structured interview; theoretical study; holistic care; grounded theory; worker; benchmarking
Creator
An entity primarily responsible for making the resource
Ang FJL; Chow CCT; Chong PH; Tan TSZ; Amin Z; Buang SNH; Finkelstein EA
Description
An account of the resource
Introduction: Being responsive to end-users is essential to good care. Limited in-depth exploration of parental perspectives on care received by children over the course of serious illness has hindered the development of process measures to evaluate quality of care. Our objective was to identify the key process indicators prioritized by parents in the care of seriously ill young children and develop a framework to guide assessment of quality of care. Method(s): This qualitative study followed Charmaz's Constructivist Grounded Theory. In-depth semi-structured interviews were conducted with parents of young children with serious illness in Singapore. Participants were sampled across various healthcare settings, children's ages, and illness categories. Theoretical sampling and constant comparative analysis were used to generate initial, focused, and theoretical codes, which informed construction of a conceptual framework. Result(s): 31 parents participated from July 2021 to February 2022. Initial and focused coding generated 64 quality of care indicators describing key care practices, interactions, and procedures. Indicators were categorized under four themes: (1) efficient healthcare structures and standards, (2) professional qualities of healthcare workers, 3. supporting parent-caregivers, and 4. collaborative and holistic care. Theoretical coding led to the development of the "PaRental perspectives on qualIty of care for Children with sErious iLlnESSes (PRICELESS)" framework which summarizes elements contributing to the parental perception of quality of care. Discussion(s): The identified process indicators will facilitate the development of standardised parent-reported measures for assessing service quality and benchmarking among providers. The framework provides overall guidance for conceiving quality improvement initiatives.Copyright 2023 Ang, Chow, Chong, Tan, Amin, Buang and Finkelstein.
Identifier
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<a href="http://doi.org/10.3389/fped.2023.1167757" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1167757</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).
2023
Amin Z
Ang FJL
Article
Benchmarking
Buang SNH
Caregiver
Child
Chong PH
Chow CCT
Conceptual Framework
Finkelstein EA
Frontiers in Pediatrics
Grounded Theory
health care organization
Health Care Quality
Holistic Care
Human
Human Tissue
October List 2052
Only Child
Palliative Therapy
Pediatrics
Perception
Qualitative Research
Semi Structured Interview
Singapore
Tan TSZ
theoretical study
Total Quality Management
worker
-
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
September 2023 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 List 2023
URL Address
<a href="http://doi.org/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163231172891</a>
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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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My Life Is a Mess but I Cope': An Analysis of the Language Children with Life-limiting and Life Threatening Illnesses Use to Describe their Own Condition
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Child; child; controlled study; female; human; male; preschool child; emotion; clinical article; interview; Only Child; human experiment; human tissue; malignant neoplasm; thematic analysis; conference abstract; health status; literature; language; ambivalence; discourse analysis
Creator
An entity primarily responsible for making the resource
Bristowe K; Braybrook D; Scott HM; Coombes L; Harardottir D; Roach A; Ellis-Smith C; Fraser L; Downing J; Murtagh FE; Harding R
Description
An account of the resource
Background/aims: Children with life-limiting and life-threatening conditions are rarely involved in research. Engaging them directly enables them to express the meaning of their condition in their own words. This study aimed to explore the language children use to describe their condition and its impact on their life, to inform strategies for engaging children about their priorities. <br/>Method(s): Semi-structured, qualitative interviews with purposively sampled children with life-limiting and life-threatening conditions. Data were analysed using thematic analysis, discourse analysis and the discourse dynamics approach to identify figurative language. <br/>Result(s): Participants: 26 children (6 cancer; 20 non-cancer) aged 5-17. <br/>Finding(s): Children as young as five provided rich descriptions of their condition, including: diverse negative emotions often contextualised by what they 'can't do' ('can't do anything', 'can't go anywhere'), and comparisons to healthy ('normal', 'usual') peers, with their condition singling them out ('the one that has something,' 'the sick one'). Others expressed ambivalence ('doesn't bother me', 'not really fussed') or acceptance using idiomatic phrases ('I can live with that', 'you're still you, you haven't gone anywhere'). Metaphor were common, including familiar journey and battle metaphors, and novel usages related to zombies, gaming, superheroes, toys and animals. Children used medical jargon related to their condition, combined with preferred words for their body ('tummy', 'belly', 'butt') and had capacity to create comparatives and superlatives to describe symptom severity (no hurt, hurt a bit, a whole lot, like crazy, really hurt, worse, better). <br/>Conclusion(s): Children make deliberate language choices when describing their condition, and can express holistic needs, and changes in health status. Clinicians should observe and mirror children's language to enhance discussions about priorities.
Identifier
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<a href="http://doi.org/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener">10.1177/02692163231172891</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).
2023
ambivalence
Braybrook D
Bristowe K
Child
Clinical Article
conference abstract
Controlled Study
Coombes L
discourse analysis
Downing J
Ellis-Smith C
Emotion
Female
Fraser L
Harardottir D
Harding R
Health Status
Human
Human Experiment
Human Tissue
Interview
Language
literature
Male
Malignant Neoplasm
Murtagh FE
Only Child
Palliative Medicine
Preschool Child
Roach A
Scott HM
September List 2027
Thematic Analysis
-
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Title
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August 2023 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 List 2023
URL Address
<a href="http://doi.org/10.1136/spcare-2023-PCC.52" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/spcare-2023-PCC.52</a>
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Title
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How do children’s nurses working in hospices manage emotional labour and professional integrity in long-term relationships with parents?
Publisher
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BMJ Supportive and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Parents; child; female; human; male; ethics; Hospices; emotion; clinical article; hospice; mobile phone; human experiment; nurse; human tissue; thematic analysis; conference abstract; coping behavior; theoretical study; social media; telephone interview; nursing practice; emotional intelligence; professionalism; purposive sample
Creator
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Brimble MJ
Description
An account of the resource
Background Children with life-limiting conditions are living longer, so relationships between nurses and families can span decades (Maunder 2013)2. Although long-term relationships between nurses and children/families in paediatric palliative care have been researched, studies undertaken exclusively in children's hospices (CH) are rare. Aims Develop an understanding of how CH nurses maintain professional integrity whilst providing long-term practical, emotional, social and spiritual care to parents. Explore coping strategies used by CH nurses to manage emotional labour. Methods Participants were a purposive sample of six registered children's nurses, employed at CH for minimum of 4 years. Participants told the story of a shift, focusing on interactions with parents. Data collected (January 2019-January 2020) via audio diaries recorded on mobile phones and further explored in telephone interviews. Audio diaries securely transmitted via 'Whatsapp' (university and hospice ethics approval granted). Results Thematic analysis (Braun and Clarke 2006)1 was used to identify that participants used a range of strategies/ approaches to manage their relationship with parents; in terms of their emotions (Purposeful positioning) and interactions (Balancing personability and professionalism). In addition, participants revealed other CH specific factors which helped them cope with their role (Coping with and counterbalancing emotional labour). Discussion Findings were indicative of CH nurses' using and building Emotional Intelligence (EI). Established EI theory was combined with findings to develop: ENRiCHn (Using EI to Navigate Relationships in Children's Hospices: a framework for nurses). Although CH specific, aspects of the framework could be adapted for other areas of nursing practice where long-term nurse-parent/client relationships exist. Conclusions The findings provided an insight into how experienced CH nurses used emotional intelligence to engage emotionally with parents whilst simultaneously managing the level of involvement and maintaining a sense of separation. Features of hospice work which positively contributed to counterbalancing the emotional demands of the role were also highlighted.
Identifier
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<a href="http://doi.org/10.1136/spcare-2023-PCC.52" target="_blank" rel="noreferrer noopener">10.1136/spcare-2023-PCC.52</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).
2023
August List 2026
BMJ Supportive and Palliative Care
Brimble MJ
Child
Clinical Article
conference abstract
Coping Behavior
Emotion
Emotional Intelligence
Ethics
Female
Hospice
Hospices
Human
Human Experiment
Human Tissue
Male
mobile phone
Nurse
Nursing Practice
Parents
professionalism
Purposive Sample
social media
telephone interview
Thematic Analysis
theoretical study
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Dublin Core
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Title
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August 2023 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 List 2023
URL Address
<a href="http://doi.org/10.1111/nicc.12943" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/nicc.12943</a>
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Title
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Neonatal organ donation: Retrospective audit into potential donation in a single neonatal unit
Publisher
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Nursing in Critical Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Infant, Newborn; England; article; human; newborn; newborn death; terminal care; documentation; human tissue; newborn intensive care; patient referral; neonatal intensive care unit; surgery; infant; conversation; nurse; cause of death; eligibility; transplantation; brain injury; cooling; organ donor
Creator
An entity primarily responsible for making the resource
Ali F; Chant K; Scales A; Sellwood M; Gallagher K
Description
An account of the resource
Background: Research has shown that many babies who die in neonatal units could have been potential tissue and/or organ donors. Despite the existence of guidelines supporting its implementation, the incidence of neonatal donation remains rare in the United Kingdom. Aim: The aim of this audit was to retrospectively determine potential eligibility for neonatal tissue and/or organ donation referral in infants who died in a single UK tertiary-level neonatal unit between 2012 and 2021. Cause of death and documentation of any discussions held regarding referral for donation were also explored. Study design: An audit was undertaken to identify all neonatal deaths at a single tertiary-level NICU in London from 2012-2021. Infants who retrospectively could have been referred as potential tissue and/or organ donors were identified using current NHS Blood and Transplant inclusion and exclusion criteria. Results and conclusion: A significant missed potential for neonatal tissue and/or organ donation referrals was identified, which is likely not just limited to the unit audited. Causes of death were as expected for a tertiary level neonatal unit and centre for therapeutic cooling of babies born with hypoxic perinatal brain injuries. Only one documented conversation was found regarding neonatal donation. Relevance to clinical practice: To enable conversations regarding neonatal donation to become a routine part of end-of-life care discussions with families as appropriate, good links between neonatal healthcare professionals and Specialist Nurses in Organ Donation need to be established. This will facilitate the referral of all suitable neonates as potential donors and ensure that neonatal staff feel supported to care for babies identified as potential donors.
Identifier
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<a href="http://doi.org/10.1111/nicc.12943" target="_blank" rel="noreferrer noopener">10.1111/nicc.12943</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).
2023
Ali F
Article
August List 2023
Brain Injury
Cause Of Death
Chant K
Conversation
cooling
Documentation
eligibility
England
Gallagher K
Human
Human Tissue
Infant
Infant, Newborn
Neonatal Intensive Care Unit
Newborn
Newborn Death
Newborn Intensive Care
Nurse
Nursing In Critical Care
organ donor
Patient Referral
Scales A
Sellwood M
Surgery
Terminal Care
Transplantation
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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/10.1016/j.ymgme.2019.11.329" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ymgme.2019.11.329</a>
Dublin Core
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Title
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Caregiver-reported impact on quality of life and disease burden in patients diagnosed with metachromatic leukodystrophy: Results of an online survey and a qualitative interview
Publisher
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Molecular Genetics and Metabolism
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; adult; biomedical technology assessment; bone marrow transplantation; Caregiver; child; clinical article; conference abstract; controlled study; disease burden; enzyme replacement; European Quality of Life 5 Dimensions questionnaire; female; follow up; France; Germany; human; human tissue; infant; institutional review; interview; investment; juvenile; male; metachromatic leukodystrophy; multicenter study; palliative therapy; patient advocacy; patient care; preliminary data; quality of life; recall; sample size; wellbeing
Creator
An entity primarily responsible for making the resource
Pang F; Shapovalov Y; Howie K; Wilds A; Calcagni C; Walz M
Description
An account of the resource
Metachromatic leukodystrophy (MLD) is a rare autosomal recessive lysosomal disorder caused by a deficiency of the enzyme arylsulfatase A (ARSA). Symptoms include motor decline, developmental regression, decreased intellectual capabilities, and behavioural/psychiatric abnormalities. Until now, little data exists on the burden of illness of MLD for patients and their caregivers. This multinational study aims to quantify caregiver-reported impacts across several key domains including symptoms, treatment burden, time investment, social & emotional well-being, and professional and financial impact. Data were collected using a 45 min web survey and follow-up interview. The survey incorporated the PedsQLTM, a well-validated QoL measure for adolescents and children, and other questions specifically designed to measure the resource use relevant for MLD families based on a majority recall period of 4 weeks. The EQ-5D was also administered to capture the impact of MLD on caregivers (health disutilities). Extensive validation of the survey was conducted through feedback from clinical experts (US and France), and MLD patient advocacy groups (US and UK). This study was approved by an independent Institutional Review Board. Respondents were recruited from the US, UK, France, and Germany, representing a mix of families based on onset types (late infantile, juvenile, adult) and treatment received (supportive/palliative care, bone marrow transplant, enzyme replacement therapy). Due to the rarity of the disease, this study has no upper limit on sample size and is actively recruiting to December 2019 with a sample of >=30 respondents. Preliminary results based on current available data indicate that there is significant burden of MLD on patients and their caregivers, with some degree of variability depending on onset type. This multinational study enhances our understanding of the burden of disease of MLD, which ultimately should improve patient care and assist in the health technology assessment (HTA) of interventions for MLD.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ymgme.2019.11.329" target="_blank" rel="noreferrer noopener">10.1016/j.ymgme.2019.11.329</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adolescent
Adult
April 2020 List
biomedical technology assessment
Bone Marrow Transplantation
Calcagni C
Caregiver
Child
Clinical Article
conference abstract
Controlled Study
Disease Burden
enzyme replacement
European Quality of Life 5 Dimensions Questionnaire
Female
Follow Up
France
Germany
Howie K
Human
Human Tissue
Infant
Institutional Review
Interview
investment
juvenile
Male
Metachromatic Leukodystrophy
Molecular Genetics and Metabolism
Multicenter Study
Palliative Therapy
Pang F
Patient Advocacy
Patient Care
preliminary data
Quality Of Life
Recall
Sample Size
Shapovalov Y
Walz M
Wellbeing
Wilds A
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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="https://jim.bmj.com/content/68/1/91" target="_blank" rel="noreferrer noopener">https://jim.bmj.com/content/68/1/91</a>
Dublin Core
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Title
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Family attitudes toward genomic sequencing in children with cardiac disease
Publisher
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Journal of Investigative 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
child; conference abstract; confidentiality; consumer; controlled study; Family Attitudes; family planning; genetic discrimination; grounded theory; health care system; heart center; Heart Diseases -- Mortality; human; human tissue; insurance; interrater reliability; perception; privacy; prognosis; resource allocation; semi structured interview; sequence analysis; surgery; transplantation; trust; uncertainty
Creator
An entity primarily responsible for making the resource
Gal D; Deuitch N; Tang R; Magnus D; Char D
Description
An account of the resource
Purpose of study Care for children with cardiac disease often involves difficult decisions and clinical uncertainty. Genomic Sequencing (GS) promises to improve clinical prognostics and could impact how difficult decisions are made. We sought to determine how GS results might alter family attitudes towards bedside care choices. Methods used We conducted semi-structured interviews of 35 families at a high-volume pediatric heart center. We discussed previous experience with and understanding of GS, perceptions toward GS in real and hypothetical scenarios, and support needed for implementing GS in clinical care. Responses were analyzed using grounded theory and a codebook was developed. Researchers discussed interpretation of codes and identified and described emerging themes. Interrater reliability was 0.91. Summary of results Three themes emerged: 1) Is knowledge beneficial? Families saw benefits in GS-the ability to provide specific and/or earlier diagnoses, clarify prognosis, change family planning, and avoid unnecessary/additional testing-but also struggled with the sense that GS results did not translate into meaningful changes in clinical care. 2) Should GS guide life limiting decisions and resource allocation? Some parents felt using GS to justify withdrawal of care or allocation of scarce resources (like organs for transplantation) could represent genetic discrimination; other parents felt GS should be used when allocating resources, even if it meant limitation of treatment options for their child. 3) Is giving GS results to the healthcare system safe? All families indicated mistrust of at least one facet of the medical system including insurance companies, maintenance of confidentiality, and the incentive structure in healthcare. Some also expressed distrust of direct to consumer GS testing. Conclusions In families of children with cardiac disease, trust is lacking in perceptions of the clinical utility of GS results, in using GS results to inform difficult decisions and in clinical protections for privacy or handling of GS results. Further efforts to improve the trustworthiness of clinical GS are needed to engage family support in implementation of GS to clinical care.
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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
April 2020 List
Char D
Child
conference abstract
Confidentiality
consumer
Controlled Study
Deuitch N
Family Attitudes
family planning
Gal D
genetic discrimination
Grounded Theory
Health Care System
heart center
Heart Diseases -- Mortality
Human
Human Tissue
Insurance
interrater reliability
Journal Of Investigative Medicine
Magnus D
Perception
Privacy
Prognosis
Resource Allocation
Semi Structured Interview
sequence analysis
Surgery
Tang R
Transplantation
Trust
Uncertainty
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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/10.1002/pbc.28013" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.28013</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Palliative care utilization in hospitalized children with cancer
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
aged; article; brain cancer; cancer model; child; Childhood cancer; cohort analysis; controlled study; female; hospital admission; hospital cost; hospital mortality; hospitalization; hospitalized child; human; human tissue; length of stay; major clinical study; male; mortality risk; palliative therapy; physician; public health; resource allocation
Creator
An entity primarily responsible for making the resource
Cheng B T; Wangmo T
Description
An account of the resource
Background: There is growing evidence that palliative care (PC) is associated with increased quality of life in children with cancer. Despite increasing recommendations in support of PC to improve pediatric oncology care, little is known about its patterns of use.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.28013" target="_blank" rel="noreferrer noopener">10.1002/pbc.28013</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
Aged
Article
brain cancer
cancer model
Cheng B T
Child
Childhood Cancer
Cohort Analysis
Controlled Study
Female
Hospital Admission
hospital cost
Hospital Mortality
Hospitalization
Hospitalized Child
Human
Human Tissue
Length Of Stay
Major Clinical Study
Male
mortality risk
Oncology 2019 List
Palliative Therapy
Pediatric Blood and Cancer
Physician
Public Health
Resource Allocation
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 Developing World 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
Developing World 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.414" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2018.10.414</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
Frequency and Clinical Characteristics Associated With Pediatric Deaths In a Tertiary Hospital in a Developing Country - Opportunities for Pediatric Palliative Care
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
antibiotic therapy; artificial ventilation; brain death; cause of death; child; clinical feature; comfort; conference abstract; controlled study; demography; developing country; diagnosis; drug withdrawal; female; health care quality; hospital patient; human; human tissue; inotropism; life sustaining treatment; major clinical study; male; medical record; neonatal intensive care unit; newborn; palliative therapy; pediatric patient; resuscitation; retrospective study; sedation; statistical analysis; terminal care; tertiary care center
Creator
An entity primarily responsible for making the resource
Cuervo Suarez M I; Munoz M; Garcia X
Description
An account of the resource
Background: Colombia does not have knowledge about the clinical characteristics of pediatric deaths caused by life-threatening conditions and/or serious illness within the hospital setting.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.414" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.414</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
antibiotic therapy
Artificial Ventilation
Brain Death
Cause Of Death
Child
Clinical Feature
Comfort
conference abstract
Controlled Study
Cuervo Suarez M I
Demography
developing country
Developing World 2019 List
Diagnosis
Drug Withdrawal
Female
Garcia X
Health Care Quality
Hospital Patient
Human
Human Tissue
inotropism
Journal of Pain and Symptom Management
Life Sustaining Treatment
Major Clinical Study
Male
Medical Record
Munoz M
Neonatal Intensive Care Unit
Newborn
Palliative Therapy
pediatric patient
Resuscitation
Retrospective Study
Sedation
statistical analysis
Terminal Care
tertiary care center
-
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/10.3164/jcbn.16-52" target="_blank" rel="noreferrer noopener">http://doi.org/10.3164/jcbn.16-52</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
Supplementation with carnitine reduces the severity of constipation: A retrospective study of patients with severe motor and intellectual disabilities
Publisher
An entity responsible for making the resource available
Journal of Clinical Biochemistry and Nutrition
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
cerebral palsy; enteric feeding; clinical trial; endogenous compound; sex difference; human tissue; intellectual impairment; school child; preschool child; gene expression; medical record review; human; article; child; female; male; controlled study; adult; clinical article; young adult; hospital; middle aged; disease severity; retrospective study; body mass; cholesterol/ec [Endogenous Compound]; infantile spasm; neuronal ceroid lipofuscinosis; clobazam/dt [Drug Therapy]; clonazepam/dt [Drug Therapy]; carnitine; carnitine deficiency/dt [Drug Therapy]; carnitine/dt [Drug Therapy]; constipation; constipation/dt [Drug Therapy]; constipation/pc [Prevention]; diet supplementation; motor dysfunction; 102767-28-2 (levetiracetam); 1069-66-5 (valproic acid); 1309-48-4 (magnesium oxide); 1317-74-4 (magnesium oxide); 14093-02-8 (iron); 14378-32-6 (zinc); 146-22-5 (nitrazepam); 1622-61-3 (clonazepam); 22316-47-8 (clobazam); 298-46-4 (carbamazepine); 461-06-3 (carnitine); 50-06-6 (phenobarbital); 53858-86-9 (iron); 541-15-1 (carnitine); 56-99-5 (carnitine); 57-30-7 (phenobarbital); 57-88-5 (cholesterol); 59-30-3 (folic acid); 6484-89-5 (folic acid); 68291-97-4 (zonisamide); 7439-89-6 (iron); 7440-66-6 (zinc); 7782-49-2 (selenium); 8028-68-0 (phenobarbital); 8047-84-5 (carbamazepine); 84057-84-1 (lamotrigine); 99-66-1 (valproic acid); acute brain disease; albumin; albumin blood level; anticonvulsant therapy; bacterial meningitis; bed rest; brain infarction; carbamazepine/dt [Drug Therapy]; carnitine deficiency; carnitine deficiency/dt [Drug Therapy]; cholesterol blood level; constipation/dt [Drug Therapy]; copper blood level; cupric ion/ec [Endogenous Compound]; enema/dt [Drug Therapy]; epilepsy/dt [Drug Therapy]; folic acid; folic acid blood level; folic acid/ec [Endogenous Compound]; groups by age; iron blood level; iron/ec [Endogenous Compound]; lamotrigine/dt [Drug Therapy]; levetiracetam/dt [Drug Therapy]; magnesium oxide/dt [Drug Therapy]; nitrazepam/dt [Drug Therapy]; Pelizaeus Merzbacher disease; periventricular leukomalacia; phenobarbital/dt [Drug Therapy]; prealbumin; prealbumin/ec [Endogenous Compound]; selenium blood level; selenium/ec [Endogenous Compound]; trace element; tuberous sclerosis; valproic acid; valproic acid/dt [Drug Therapy]; zinc/ec [Endogenous Compound]; zonisamide/dt [Drug Therapy]; constipation; NCL3; Pelizaeus- Merzbacher disease; tuberous sclerosis; West syndrome; pharmacologic intervention; Carnitine
Creator
An entity primarily responsible for making the resource
Murata S; Inoue K; Aomatsu T; Yoden A; Tamai H
Description
An account of the resource
Carnitine is an essential nutrient for the mitochondrial transport of fatty acids. Carnitine deficiency causes a variety of symptoms in multiple organs. Patients with severe motor and intellectual disabilities often have carnitine deficiency. This study aimed to determine the correlation between constipation and carnitine deficiency in them. Patients with severe motor and intellectual disabilities at our hospital were retrospectively reviewed. The correlation between level of free carnitine and severity of constipation was examined. Constipation and non-constipation groups were compared for age; sex; body mass index; bed rest period; use of anti-epileptic drugs, valproate sodium, or enteral nutrition; and serum levels of albumin, pre-albumin, totalcholesterol, free carnitine, folic acid, and trace elements. Moreover, severity of constipation before and after carnitine supplementation was assessed. Twenty-seven patients were enrolled. Of these, 14 were assigned to the constipation group and 13 to the non-constipation group. The free carnitine level was significantly correlated with severity of constipation (R = 0.7604, p<0.01). Free carnitine was significantly lower in the constipation compared with the non-constipation group (p<0.01). No other significant differences between the groups were found. The severity of constipation was significantly relieved after carnitine supplementation (p<0.001). In conclusion, carnitine supplementation could reduce the severity of constipation. Copyright © 2017 JCBN.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3164/jcbn.16-52" target="_blank" rel="noreferrer noopener">10.3164/jcbn.16-52</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).
102767-28-2 (levetiracetam)
1069-66-5 (valproic acid)
1309-48-4 (magnesium oxide)
1317-74-4 (magnesium oxide)
14093-02-8 (iron)
14378-32-6 (zinc)
146-22-5 (nitrazepam)
1622-61-3 (clonazepam)
2017
22316-47-8 (clobazam)
298-46-4 (carbamazepine)
461-06-3 (carnitine)
50-06-6 (phenobarbital)
53858-86-9 (iron)
541-15-1 (carnitine)
56-99-5 (carnitine)
57-30-7 (phenobarbital)
57-88-5 (cholesterol)
59-30-3 (folic acid)
6484-89-5 (folic acid)
68291-97-4 (zonisamide)
7439-89-6 (iron)
7440-66-6 (zinc)
7782-49-2 (selenium)
8028-68-0 (phenobarbital)
8047-84-5 (carbamazepine)
84057-84-1 (lamotrigine)
99-66-1 (valproic acid)
acute brain disease
Adult
albumin
albumin blood level
anticonvulsant therapy
Aomatsu T
Article
bacterial meningitis
bed rest
body mass
brain infarction
carbamazepine/dt [Drug Therapy]
carnitine
carnitine deficiency
carnitine deficiency/dt [Drug Therapy]
carnitine/dt [Drug Therapy]
Cerebral Palsy
Child
cholesterol blood level
cholesterol/ec [Endogenous Compound]
Clinical Article
Clinical Trial
clobazam/dt [Drug Therapy]
clonazepam/dt [Drug Therapy]
Constipation
constipation/dt [Drug Therapy]
constipation/pc [Prevention]
Controlled Study
copper blood level
cupric ion/ec [Endogenous Compound]
diet supplementation
Disease Severity
Endogenous Compound
enema/dt [Drug Therapy]
enteric feeding
epilepsy/dt [Drug Therapy]
Female
folic acid
folic acid blood level
folic acid/ec [Endogenous Compound]
Gene Expression
groups by age
Hospital
Human
Human Tissue
infantile spasm
Inoue K
Intellectual Impairment
iron blood level
iron/ec [Endogenous Compound]
Journal of Clinical Biochemistry and Nutrition
lamotrigine/dt [Drug Therapy]
levetiracetam/dt [Drug Therapy]
magnesium oxide/dt [Drug Therapy]
Male
Medical Record Review
Middle Aged
motor dysfunction
Murata S
NCL3
neuronal ceroid lipofuscinosis
nitrazepam/dt [Drug Therapy]
Pelizaeus Merzbacher disease
Pelizaeus- Merzbacher disease
periventricular leukomalacia
pharmacologic intervention
phenobarbital/dt [Drug Therapy]
prealbumin
prealbumin/ec [Endogenous Compound]
Preschool Child
Retrospective Study
School Child
selenium blood level
selenium/ec [Endogenous Compound]
sex difference
Tamai H
trace element
Tuberous Sclerosis
valproic acid
valproic acid/dt [Drug Therapy]
West syndrome
Yoden A
Young Adult
zinc/ec [Endogenous Compound]
zonisamide/dt [Drug Therapy]
-
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/10.1177/0003489417723033" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0003489417723033</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
Dysphagia in Rett Syndrome: A Descriptive Study
Publisher
An entity responsible for making the resource available
Annals of Otology, Rhinology and Laryngology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
adolescent; caregiver; major clinical study; human tissue; complication; prevention; feeding; human; child; female; diagnosis; deterioration; normal human; speech; Rett syndrome; dysphagia; hand movement; otorhinolaryngology; apraxia; bronchitis; drug fatality; neuropsychiatry; psychosexual development; tongue; feeding difficulties; trajectory; characteristics; progressive feeding deterioration
Creator
An entity primarily responsible for making the resource
Mezzedimi C; Livi W; De Felice C; Cocca S
Description
An account of the resource
Objectives: Rett syndrome (RS) is a neurodevelopmental disorder and the second major cause of mental retardation in females. The aim of this study was to evaluate swallowing problems of RS patients by endoscopic assessment and compile a list of suggestions for managing feeding and preventing complications. Methods: The sample consisted of 61 female patients (mean age = 13.6 years, range, 2-33 years) admitted to the Department of Neuropsychiatry, where they had previously been diagnosed with RS. Speech evaluation associated with observation during mealtimes was useful to formulate suggestions for caregivers. Results: Progressive deterioration of feeding was commonly noted by caregivers. Fifty-four patients had a history of recurrent episodes of bronchitis. Oral apraxia, dyskinetic tongue movements, prolonged oral stage, and poor bolus formation were the most common findings in all patients. Conclusions: Dysphagia was primarily limited to oral preparatory phases, while the pharyngeal phase was normal in most patients. The high percentage of dysphagia suggests the need to accurately monitor the feeding capability of RS children. It is critical to correctly inform caregivers about safe swallowing procedures to reduce the incidence of fatal complications.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0003489417723033" target="_blank" rel="noreferrer noopener">10.1177/0003489417723033</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
Annals of Otology, Rhinology and Laryngology
apraxia
Bronchitis
Caregiver
characteristics
Child
Cocca S
Complication
De Felice C
Deterioration
Diagnosis
drug fatality
Dysphagia
Feeding
feeding difficulties
Female
hand movement
Human
Human Tissue
Livi W
Major Clinical Study
Mezzedimi C
neuropsychiatry
Normal Human
Otorhinolaryngology
Prevention
progressive feeding deterioration
Psychosexual Development
Rett syndrome
Speech
tongue
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
October 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2019.0164" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2019.0164</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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Attempting to Define Clinical Productivity Metrics among Pediatric Palliative Care Services at Academic Children's Hospitals
Publisher
An entity responsible for making the resource available
Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
United States; article; child; female; human; male; palliative therapy; pediatric palliative care; clinical article; human tissue; program development; billing and coding; burnout; clinical productivity; convenience sample; leadership; productivity; sustainability; workload
Creator
An entity primarily responsible for making the resource
Mahoney D P; Brook I; Fossa M; Kang T
Description
An account of the resource
Introduction: Pediatric palliative care (PPC) programs have grown in size and number at academic children's hospitals in the United States for the past 20 years. Little is known about the relationships between program workforce staffing, billing and coding practices, clinical service requirements for billing providers, and sustainability of program models for billing providers. Method(s): The authors contacted a convenience sample of 10 PPC program leaders at academic children's hospitals in the United States. Program leaders were asked to provide information about billing provider full-time equivalent (FTE) staffing, billing and coding practices, and productivity metrics for a three-month period, from January 1 to March 31, 2017. Result(s): Ten programs participated in the convenience sample survey, and seven provided information about billing and coding practices. For the seven programs that provided evaluation and management data, calculated estimate of mean work Relative Value Unit (wRVU) production per 1.0 FTE per year was 1626. Calculated estimate of consultations per 1.0 FTE per month was 15. Calculated estimate of total clinical encounters per 1.0 FTE per month was 70. Conclusion(s): The relationships between PPC billing provider productivity and clinical workload are complex and vary widely among a convenience sample of academic PPC programs. Given the high burnout rates in the field, efforts should be made to more clearly define these relationships to promote sustainability of both billing and nonbilling PPC providers.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2019.0164" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0164</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
Article
billing and coding
Brook I
Burnout
Child
Clinical Article
clinical productivity
Convenience Sample
Female
Fossa M
Human
Human Tissue
Journal of Palliative Medicine
Kang T
Leadership
Mahoney D P
Male
October 2019 List
Palliative Therapy
Pediatric Palliative Care
productivity
Program Development
sustainability
United States
workload
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
October 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2019 List
URL Address
<a href="https://academic.oup.com/pch/article/24/Supplement_2/e6/5507203" target="_blank" rel="noreferrer noopener">https://academic.oup.com/pch/article/24/Supplement_2/e6/5507203</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 experiences of bereaved family caregivers with advance care planning for children with medical complexity
Publisher
An entity responsible for making the resource available
Paediatrics and Child Health (Canada)
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
death; child; female; human; male; genetic transcription; clinical article; health care personnel; advance care planning; conference abstract; caregiver; human tissue; consultation; perception; semi structured interview; content analysis; conversation; informed consent; personal experience
Creator
An entity primarily responsible for making the resource
Lord S; Moore C; Netten K; Amin R; Rappaport A; Hellman J; Cohen E; Orkin J
Description
An account of the resource
BACKGROUND: Medical technologies and technological advances have resulted in a growing number of children with medical complexity (CMC), many of whom would not have survived previously. Despite these advances CMC are still at high risk of morbidity and mortality during childhood. Advance Care Planning (ACP) is defined by the Canadian Paediatric Society as "the process of discussing life-sustaining treatments and establishing long-term care goals." Currently the pediatric literature regarding ACP has been largely limited to the intensive care setting and the oncology population. There is a dearth of information focussing on ACP for CMC and that includes bereaved family caregiver's views. Bereaved caregivers have the unique ability to reflect upon ACP through their child's whole disease course and end of life experience. OBJECTIVE(S): To explore the ACP experiences of bereaved family caregivers of CMC who have experienced the entire illness trajectory, including their child's death. DESIGN/METHODS: A qualitative approach was applied, allowing for in-depth data collection through semi-structured interviews. Purposive sampling was used to recruit bereaved caregivers of CMC until thematic saturation was reached. The interview guide was developed through expert consultation and was refined iteratively throughout the interviews. Questions assessed caregivers' experiences with ACP discussions, their feelings about those conversations and their perceptions about whether ACP affected the end of life experience. Each participant provided written, informed consent and interviews were recorded and transcribed verbatim. Three research team members used content analysis to independently code the interviews. RESULT(S): 13 bereaved caregivers of CMC completed 12 interviews ranging from 40-80 minutes in length. All caregivers of CMC had participated in ACP discussions and sometimes found them to be overwhelming and frustrating in the moment. However, all caregivers reported that they now understand and appreciate the importance of the discussions. Four major themes emerged from the data describing caregiver's feelings and experiences regarding Advance Care Planning: 1) influencers of the ACP experience, 2) positive experiences, 3) negative experiences and 4) the influence of ACP on end of life. CONCLUSION(S): Bereaved caregivers provided a unique perspective, highlighting the importance and the benefits of ACP discussions. They also revealed various ways in which ACP conversations could be improved. These insights will be helpful in guiding educational tools for health care providers working with CMC in the future.
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
Advance Care Planning
Amin R
Caregiver
Child
Clinical Article
Cohen E
conference abstract
Consultation
Content Analysis
Conversation
Death
Female
genetic transcription
Health Care Personnel
Hellman J
Human
Human Tissue
Informed Consent
Lord S
Male
Moore C
Netten K
October 2019 List
Orkin J
Paediatrics and Child Health (Canada)
Perception
Personal Experience
Rappaport A
Semi Structured Interview
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
October 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2019 List
URL Address
<a href="https://academic.oup.com/pch/article/24/Supplement_2/e25/5506908" target="_blank" rel="noreferrer noopener">https://academic.oup.com/pch/article/24/Supplement_2/e25/5506908</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
Who should discuss goals of care during acute deteriorations in patients with life threatening illnesses? A survey of clinicians from diverse pediatric specialties
Publisher
An entity responsible for making the resource available
Paediatrics and Child Health (Canada)
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
child; female; human; major clinical study; male; palliative therapy; controlled study; emergency ward; cancer patient; respiratory distress; conference abstract; decision making; human tissue; perception; clinician; spinal muscular atrophy; data analysis software; advanced cancer; brain disease; cancer resistance; deterioration; disease exacerbation; e-mail; hypoplastic left heart syndrome; leukemia; Likert scale; nonparametric test; pediatrician; vignette
Creator
An entity primarily responsible for making the resource
Cote A J; Gaucher N; Payot A
Description
An account of the resource
BACKGROUND: Discomfort exists discussing goals of care (GOC) with families of children with advanced life-threatening illnesses. There also exists important variability in the management of these patients. OBJECTIVE(S): This study seeks to explore the perceptions of pediatric specialists involved in the care of children with life-threatening illnesses with regards to GOC discussions and management during acute unexpected clinical deteriorations. DESIGN/METHODS: This single center survey study used 4 scenarios of children with advanced life-threatening illnesses, presenting to the emergency department (ED) with respiratory distress. Scenarios included patients with hypoplastic left heart syndrome (HLHS), static encephalopathy, spinal muscular atrophy (SMA), refractory leukemia. Questions following each vignette were identical. Physicians from the specialties most involved in these scenarios completed the survey by email or in person. Data analysis used SPSS v.20 (IBM Inc.). Related samples non-parametric tests compared participants' Likert scale answers to the different scenarios. RESULT(S): Between May 2015 and May 2016, 60 participants completed the study; 14 were excluded (>60% missing answers). Most (80.4%) participants reported an interest in pediatric palliative care; 71.7% had 0-3 formal trainings. Participants believed GOC were best discussed before an acute deterioration (Table 1). Acute deteriorations were not seen as an opportune moment to initiate discussions about GOC. However, validating GOC was necessary, given that not discussing GOC was unacceptable. Pediatric specialists were seen as the most suitable teams to initiate these discussions, while the ED's role was unclear. Several management options were less acceptable for the patient with static encephalopathy. CONCLUSION(S): Discussing GOC in the ED during exacerbations is complex, involving many stakeholders, who may not always be available to help in decision making processes. Advanced care planning with these families is essential to prepare them for acute heath events. (Table Presented).
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
Advanced Cancer
brain disease
Cancer Patient
cancer resistance
Child
Clinician
conference abstract
Controlled Study
Cote A J
Data Analysis Software
Decision Making
Deterioration
disease exacerbation
E-mail
Emergency Ward
Female
Gaucher N
Human
Human Tissue
Hypoplastic Left Heart Syndrome
Leukemia
Likert scale
Major Clinical Study
Male
nonparametric test
October 2019 List
Paediatrics and Child Health (Canada)
Palliative Therapy
Payot A
Pediatrician
Perception
respiratory distress
Spinal Muscular Atrophy
vignette
-
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
September 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2019 List
URL Address
<a href="http://doi.org/10.1001/jamapediatrics.2019.1712" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamapediatrics.2019.1712</a>
Dublin Core
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Title
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Prevalence and Incidence of Anxiety and Depression among Children, Adolescents, and Young Adults with Life-Limiting Conditions: A Systematic Review and Meta-analysis
Publisher
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JAMA Pediatrics.
Date
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2019
Subject
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Medline; adolescent; adult; article; child; female; human; male; systematic review; interview; human tissue; data extraction; Embase; meta analysis; synthesis; anxiety; depression; young adult; incidence; prevalence; monitoring; Organisation for Economic Co-operation and Development; psychologic assessment; PsycINFO; regression analysis
Creator
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Barker MM; Beresford B; Bland M; Fraser LK
Description
An account of the resource
IMPORTANCE: Children, adolescents, and young adults with life-limiting conditions experience various challenges that may make them more vulnerable to mental health problems, such as anxiety and depression. However, the prevalence and incidence of anxiety and depression among this population appears to be unknown. OBJECTIVE: To conduct a systematic review and meta-analysis to estimate the prevalence and/or incidence of anxiety and depression in children, adolescents, and young adults with life-limiting conditions. DATA SOURCES: Searches of MEDLINE (PubMed), PsycInfo, and Embase were conducted to identify studies published between January 2000 and January 2018. STUDY SELECTION: Studies were eligible for this review if they provided primary data of anxiety or depression prevalence and/or incidence, included participants aged 5 to 25 years with a life-limiting condition, were conducted in an Organisation for Economic Co-operation and Development country, and were available in English. DATA EXTRACTION AND SYNTHESIS: Random-effects meta-analyses were generated to provide anxiety and depression prevalence estimates. Meta-regression was conducted to analyze associations between study characteristics and each prevalence estimate. MAIN OUTCOMES AND MEASURES: Prevalence of anxiety and depression. RESULTS: A total of 14 866 nonduplicate articles were screened, of which 37 were included in the review. Of these, 19 studies reported anxiety prevalence, and 36 studies reported depression prevalence. The mean (range) age of participants was 15.4 (6-25) years. The meta-analysis of anxiety prevalence (n = 4547 participants) generated a pooled prevalence estimate of 19.1% (95% CI, 14.1%-24.6%). Meta-regression analysis found statistically significant differences in anxiety prevalence by assessment tool; diagnostic interviews were associated with higher anxiety prevalence (28.5% [95% CI, 13.2%-46.8%]) than self-reported or parent-reported measures (14.9% [95% CI, 10.9%-19.4%]). The depression meta-analysis (n = 5934 participants) found a pooled prevalence estimate of 14.3% (95% CI, 10.5%-18.6%). Meta-regression analysis revealed statistically significant differences in depression prevalence by the mean age of the sample (β = 0.02 [95% CI, 0.01-0.03]; P = .001). CONCLUSIONS AND RELEVANCE: In this systematic review and meta-analysis, the prevalence of anxiety and depression among children, adolescents, and young adults with life-limiting conditions was high, highlighting the need for increased psychological assessment and monitoring. Further research is required to determine the prevalence and incidence of anxiety and depression in a larger sample of children, adolescents, and young adults with a broader range of life-limiting conditions.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jamapediatrics.2019.1712" target="_blank" rel="noreferrer noopener">10.1001/jamapediatrics.2019.1712</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
Adult
anxiety
Article
Barker MM
Beresford B
Bland M
Child
data extraction
Depression
Embase
Female
Fraser LK
Human
Human Tissue
Incidence
Interview
JAMA Pediatrics.
Male
Medline
meta analysis
Monitoring
Organisation for Economic Co-operation and Development
Prevalence
psychologic assessment
Psycinfo
Regression Analysis
September 2019 List
synthesis
Systematic Review
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 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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July 2019 List
URL Address
<a href="http://doi.org/10.1136/bmjopen-2018-028548" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1136/bmjopen-2018-028548</a>
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Title
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Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: A qualitative interview study
Publisher
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BMJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
death; article; child; female; human; male; palliative therapy; genetic transcription; thematic analysis; pediatrics; clinical article; palliative care; pediatric intensive care unit; advance care planning; decision making; interview; human tissue; national health service; nonverbal communication; paediatric palliative care
Creator
An entity primarily responsible for making the resource
Mitchell S; Spry J L; Hill E; Coad J; Dale J; Plunkett A
Description
An account of the resource
Objectives To provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU). Design An in-depth qualitative interview study with a sample of parents of children with life-limiting or life-threatening conditions who had died in PICU within the previous 12 months. A thematic analysis was conducted on the interview transcripts. Setting A PICU in a large National Health Service (NHS) tertiary children's hospital in the West Midlands, UK. Participants 17 parents of 11 children who had died in the PICU. Results Five interconnected themes were identified related to end of life care decision-making:(1) parents have significant knowledge and experiences that influence the decision-making process.(2) Trusted relationships with healthcare professionals are key to supporting parents making end of life decisions.(3) Verbal and non-verbal communication with healthcare professionals impacts on the family experience.(4) Engaging with end of life care decision-making can be emotionally overwhelming, but becomes possible if parents reach a place of acceptance'.(5) Families perceive benefits to receiving end of life care for their child in a PICU. Conclusions and implications The death of a child is an intensely emotional experience for all involved. This study adds to the limited evidence base related to parental experiences of end of life care decision-making and provides findings that have international relevance, particularly related to place of care and introduction of end of life care discussions. The expertise and previous experience of parents is highly relevant and should be acknowledged. End of life care decision-making is a complex and nuanced process; the information needs and preferences of each family are individual and need to be understood by the professionals involved in their care. Copyright © 2019 Author(s).
Identifier
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<a href="http://doi.org/10.1136/bmjopen-2018-028548" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2018-028548</a>
2019
Advance Care Planning
Article
Bmj Open
Child
Clinical Article
Coad J
Dale J
Death
Decision Making
Female
genetic transcription
Hill E
Human
Human Tissue
Interview
July 2019 List
Male
Mitchell S
national health service
Nonverbal Communication
paediatric palliative care
Palliative Care
Palliative Therapy
Pediatric Intensive Care Unit
Pediatrics
Plunkett A
Spry J L
Thematic Analysis
-
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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 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/10.1186/s12904-018-0360-y" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-018-0360-y</a>
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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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Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: A qualitative study
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
decision making;intensive care;life sustaining treatment;neonatology;Palliative therapy;qualitative research;religion;treatment withdrawal;article;Child;father;genetic transcription;health care personnel;Human;human tissue;interview;major clinical study;Male;medical record;mother;narrative;prognosis;thematic analysis
Creator
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Superdock AK;Barfield RC;Brandon DH;Docherty SL
Description
An account of the resource
Background: Medical advances have led to new challenges in decision-making for parents of seriously ill children. Many parents say religion and spirituality (R&S) influence their decisions, but the mechanism and outcomes of this influence are unknown. Health care providers (HCPs) often feel unprepared to discuss R&S with parents or address conflicts between R&S beliefs and clinical recommendations. Our study sought to illuminate the influence of R&S on parental decision-making and explore how HCPs interact with parents for whom R&S are important. Methods: A longitudinal, qualitative, descriptive design was used to (1) identify R&S factors affecting parental decision-making, (2) observe changes in R&S themes over time, and (3) learn about HCP perspectives on parental R&S. The study sample included 16 cases featuring children with complex life-threatening conditions. The length of study for each case varied, ranging in duration from 8 to 531 days (median = 380, mean = 324, SD = 174). Data from each case included medical records and sets of interviews conducted at least monthly with mothers (n = 16), fathers (n = 12), and HCPs (n = 108). Thematic analysis was performed on 363 narrative interviews to identify R&S themes and content related to decision-making. Results: Parents from 13 cases reported R&S directly influenced decision-making. Most HCPs were unaware of this influence. Fifteen R&S themes appeared in parent and HCP transcripts. Themes most often associated with decision-making were Hope & Faith, God is in Control, Miracles, and Prayer. Despite instability in the child's condition, these themes remained consistently relevant across the trajectory of illness. R&S influenced decisions about treatment initiation, procedures, and life-sustaining therapy, but the variance in effect of R&S on parents' choices ultimately depended upon other medical & non-medical factors. Conclusions: Parents consider R&S fundamental to decision-making, but apply R&S concepts in vague ways, suggesting R&S impact how decisions are made more than what decisions are made. Lack of clarity in parental expressions of R&S does not necessarily indicate insincerity or underestimation of the seriousness of the child's prognosis; R&S can be applied to decision-making in both functional and dysfunctional ways. We present three models of how religious and spiritual vagueness functions in parental decision-making and suggest clinical applications.
Identifier
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<a href="http://doi.org/10.1186/s12904-018-0360-y" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0360-y</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
Article
Barfield RC
BMC Palliative Care
Brandon DH
Child
Decision Making
Docherty SL
Father
genetic transcription
Health Care Personnel
Human
Human Tissue
Intensive Care
Interview
Life Sustaining Treatment
Major Clinical Study
Male
Medical Record
Mother
Narrative
Neonatology
November 2018 List
Palliative Therapy
Prognosis
Qualitative Research
Religion
Superdock AK
Thematic Analysis
Treatment Withdrawal
-
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
August 2018 List
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).
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 2018 List
URL Address
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216318769196</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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The needs of parents during end-of-life care for terminally ill child
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
terminal care; human; child; female; male; clinical article; death; palliative therapy; conference abstract; human tissue; identity; interview; data analysis; mother; risk factor; leukemia; terminally ill patient; solid malignant neoplasm; genetic transcription; grounded theory; qualitative research; genetic disorder; father; immune deficiency
Creator
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Polakova K; Loucka M
Description
An account of the resource
Research aim: The main aim was to describe the needs of parents caring for a terminally ill child during the course of the illness, the time of dying, and after the death of the child. Secondary aim was to identify the risk factors occurring during care provision. Study population: The study sample consisted of 9 parents of 8 children; seven mothers and two fathers. All participants lost their child due to a serious illness (solid tumour, leukaemia, genetic conditions, immunodeficiency syndrome, neurodegenerative condition). The child's age at their death varied from 2 months to 14 years. 6 children died in hospital, 2 at home. Study design: This was a qualitative study. The data collection was conducted by in-depth interviews with bereaved parents. Inclusion criteria was a death of a child due to a serious illness. Participants were recruited among bereaved parents via organisation for bereaved parents, by the snow ball method and self-selection method. Data analysis: Collected data were analysed by grounded theory techniques. All interviews were transcribed verbatim and analysed by open coding and axial coding. Results: Two categories based on key findings were identified: The preservation of one's identity of parent and the influence of the surroundings. The need to be with the child and the need to take care of the child were identified as the main needs of the bereaved parents. The influence of the surroundings is characterised by the support provided by the health professionals taking care of the child and the family. Issues identified by the parents included, among others, the issue of doctor-parent communication, the lack of psychological support, and the importance of support provided to parents after the child's death. The results of the study indicate the need for a complex approach to the family and the need of paediatric palliative care.
Identifier
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<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</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
August 2018 List
Child
Clinical Article
conference abstract
Data Analysis
Death
Father
Female
Genetic Disorder
genetic transcription
Grounded Theory
Human
Human Tissue
Identity
immune deficiency
Interview
Leukemia
Loucka M
Male
Mother
Palliative Medicine
Palliative Therapy
Polakova K
Qualitative Research
risk factor
solid malignant neoplasm
Terminal Care
terminally Ill Patient
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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March 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
March 2018 List
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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What do transplant physicians think about palliative care? A national survey study
Publisher
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Blood
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
medical oncologist; palliative therapy; Adult; bone marrow; Caregiver; Child; conference abstract; Female; friend; graft recipient; graft versus host reaction; hematologic disease; Hematopoietic stem cell transplantation; Hispanic; hospice; Human; human tissue; Male; outpatient care; patient referral; Perception; Questionnaire; Trust; United States
Creator
An entity primarily responsible for making the resource
El-Jawahri A; LeBlanc TW; Burns LJ; Denzen E; Meyer CL; Mau LW; Roeland EJ; Wood WA; Petersdorf E
Description
An account of the resource
Background: Palliative care (PC) has been shown to improve quality of life, symptom burden, and mood in patients with advanced solid tumors as well as those with hematologic malignancies undergoing hematopoietic stem cell transplantation (HSCT). Despite these improvements in patientcentered outcomes, PC is under-utilized in the care of patients undergoing HSCT. We hypothesized that this may in part be due to transplant physicians' perceptions and attitudes about PC, which have not been fully elucidated. Methods: We conducted a cross-sectional, web-based survey of transplant physicians who care for patients with hematologic diseases in January-February 2017. Participants were recruited from the American Society for Blood and Marrow Transplantation (ASBMT) membership list. Using a 28-item questionnaire adapted from prior studies of medical oncologists, we examined transplant physicians' 1) access to PC services; 2) perceptions and attitudes about PC; and 3) perceptions of the unmet PC needs of HSCT patients and their caregivers. Results: Of 1005 eligible physicians, 277 transplant physicians completed the questionnaire yielding a response rate of 28%. The majority were white (194/277, 70%), not Hispanic or Latino (194/277, 70%), and male (179/277, 65%). All regions in the United States were represented. Most physicians (179/277, 65%) provided care to adult patients, with 28% (77/277) to pediatric patients and 8% (21/277) to both groups. The majority (159/277, 57%) provided care to both non-HSCT and HSCT patients, with 43% (118/277) to HSCT patients only. Overall, 36% (101/277) had < 10 years of practice, 29% (80/277) had 10-20 years, and 35% (96/277) had > 20 years in practice. Physicians collaborated with PC services more often for inpatient (121/277, 44%) than outpatient care (57/277, 21%). The quality of inpatient and outpatient PC services were considered excellent by 45% (124/77) and 30% (82/277) of physicians, respectively. Only 14% (39/277) reported collaborating often with home hospice services. Most physicians (233/277, 84%) felt that they should coordinate the care of their patients across all stages of disease including at the end of life (EOL). The majority (210/277, 76%) stated that they trust PC clinicians to care for their patients, but 40% (110/277) agreed that PC clinicians do not have enough understanding to counsel their HSCT patients regarding their treatment. Most expressed concerns about how patients perceive PC [Figure 1 and Figure 2]. For example, 82% (227/277) of physicians reported that when patients hear the term PC, they feel scared. In addition, 65% (180/277) reported that if a PC referral is suggested, patients might think nothing more can be done for their disease. The majority of transplant physicians reported that the service name 'palliative care' is a barrier to PC utilization [Figure 3]. However, most physicians recognized substantial unmet PC needs in their population including 1) physical symptoms (56%); 2) graft-versus-host disease symptoms (51%), 3) emotional and psychological needs (71%); 4) spiritual needs (63%); 5) preparing for future medical care (65%); and 6) supporting family and friends (69%). Conclusions: Despite reporting immense PC needs for HSCT patients, transplant physicians have a strong sense of commitment to address these needs. While the majority of respondents reported trusting PC, they also expressed substantial concerns about PC clinicians' knowledge about HSCT. In addition, most transplant physicians were concerned about patients' perception of the term 'palliative care'. Interventions are needed to promote collaboration, improve perceptions, and enhance integration of PC for transplant recipients. (Figure Presented).
2017
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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
Adult
Blood
bone marrow
Burns LJ
Caregiver
Child
conference abstract
Denzen E
El-Jawahri A
Female
friend
Graft Recipient
graft versus host reaction
hematologic disease
Hematopoietic stem cell transplantation
Hispanic
Hospice
Human
Human Tissue
LeBlanc TW
Male
March 2018 List
Mau LW
medical oncologist
Meyer CL
outpatient care
Palliative Therapy
Patient Referral
Perception
Petersdorf E
Questionnaire
Roeland EJ
Trust
United States
Wood WA
-
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 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
February 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2016.05.019" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2016.05.019</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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The Effect of Pediatric Palliative Care Policy on Hospice Utilization Among California Medicaid Beneficiaries
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
California; Hospice Care; medicaid; model; palliative therapy; California; Child; Controlled Study; family study; hospice care; Hospices; Human; human tissue; Incidence; Length of Stay; major clinical study; Medicaid; Only Child; Palliative Care
Creator
An entity primarily responsible for making the resource
Lindley LC
Description
An account of the resource
Context California implemented pediatric palliative care legislations that allowed children to receive curative and supportive care from diagnosis of a life-threatening serious illness in 2010. Palliative care policies may improve access to hospice care as children near end of life. Objectives The aim of this study was to examine the effect of the palliative care policy on hospice utilization for children and their families was investigated. Methods Using 2007 and 2010 California Medicaid data, a difference-in-difference analysis was conducted to analyze hospice use (i.e., hospice enrollment, hospice length of stay) changes for children who resided in pediatric policy counties relative to those who did not. The sample of children in California who died with a life-threatening serious illness in 2007 and 2010 equaled 979 children. Results More than 10% of children enrolled in hospice care with an average of less than 3 days of hospice care. The palliative care policy did not have any effect on hospice enrollment. However, the policy was positively associated with increasing days in hospice care (incidence rate ratio = 5.61, P < 0.05). The rate of hospice length of stay increased by a factor of 5.61 for children in palliative care counties compared with children unaffected by the policy. Conclusion The pediatric palliative care policy was associated with longer lengths of stay in hospice once the children were enrolled. Policies promoting palliative care are critical to ensuring access to hospice care for children.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2016.05.019" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.05.019</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).
2016
California
Child
Controlled Study
Family Study
February 2018 List
Hospice Care
Hospices
Human
Human Tissue
Incidence
Journal of Pain and Symptom Management
Length Of Stay
Lindley LC
Major Clinical Study
Medicaid
Model
Only Child
Palliative Care
Palliative Therapy
-
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 2017 List
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 Experience Of Providing End Of Life Care At A Children's Hospice: A Qualitative Study
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
2017
Subject
The topic of the resource
Hospice; Qualitative Research; Terminal Care; Child; Clinical Article; Controlled Study; Doctor Patient Relation; Education; Human; Human Tissue; Interview; Model; Palliative Therapy; Sampling; Symptom; Thematic Analysis
Creator
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McConnell T; Porter S
Identifier
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10.1186/s12904-017-0189-9
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
April 2017 List
BMC Palliative Care
Child
Clinical Article
Controlled Study
Doctor Patient Relation
Education
Hospice
Human
Human Tissue
Interview
McConnell T
Model
Palliative Therapy
Porter S
Qualitative Research
Sampling
Symptom
Terminal Care
Thematic Analysis