1
40
18
-
Dublin Core
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Title
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June 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.
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June 2022 List
URL Address
<a href="https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-023-01164-x">https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-023-01164-x</a>
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Title
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A pilot study on sports activities in pediatric palliative care: just do it
Publisher
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BMC Palliative Care
Date
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2023
Subject
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Palliative Care; child; article; controlled study; female; human; male; caregiver; palliative therapy; quality of life; Pilot Projects; Sports; personal experience; pilot study; juvenile; motor dysfunction; questionnaire; exercise; physical activity; swimming; International Classification of Functioning Disability and Health; mental deficiency
Creator
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Avagnina I; Santini A; Maghini I; Salamon E; Papa S; Giacomelli L; Perilongo G; Agosto C; Benini F
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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).
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<a href="https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-023-01164-x">10.1186/s12904-023-01164-x</a>
2023
Agosto C
Article
Avagnina I
Benini F
BMC Palliative Care
Caregiver
Child
Controlled Study
Exercise
Female
Giacomelli L
Human
International Classification of Functioning Disability and Health
June 2022 List
juvenile
Maghini I
Male
mental deficiency
motor dysfunction
Palliative Care
Palliative Therapy
Papa S
Perilongo G
Personal Experience
physical activity
Pilot Projects
Pilot Study
Quality Of Life
Questionnaire
Salamon E
Santini A
Sports
Swimming
-
Dublin Core
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Title
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February 2024 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 List 2024
URL Address
<a href="http://doi.org/10.1097/JPN.0000000000000780" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/JPN.0000000000000780</a>
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Title
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A Qualitative Study of Parents' Experiences of Bonding in End-of-Life Care in a Neonatal Intensive Care Unit
Publisher
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Journal of Perinatal & Neonatal Nursing
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; diagnosis; terminal care; adult; article; human; newborn; clinical article; interview; content analysis; parent; pilot study; qualitative research; newborn intensive care; neonatal intensive care unit; health care personnel; infant; decision making; powerlessness; parenthood; shame
Creator
An entity primarily responsible for making the resource
Funkquist EL; Lindquist A; Edner A
Description
An account of the resource
To examine the parent's experiences of bonding in the care of newborns who were seriously ill during the neonatal period and did not survive. Design: Data were collected through 7 interviews with 10 parents whose infants were cared for and died in a neonatal intensive care unit. Methods: The interviews were pilot processed using inductive content analysis and then processed again using deductive content analysis with the attachment theory applied as a theoretical frame. Results: Three main themes emerged from the parents' descriptions: 1. The parents' relationship with the healthcare provider: an alliance between the parent and the healthcare provider can facilitate communication, for example, the use of proposals to promote parents' role in the care; 2. The parents' relationship with the infant: parents' wish to fulfill the role of a protective parent, and it is of importance for the parents' future well-being to take part in care and decision making; and 3. The parents' relationship with the own self: in this unknown situation, parents' expectations of parenthood are broken, and they experience feelings of shame and powerlessness. Conclusion: The relationship between the parent and the healthcare provider affects how the parents bond with their child and their experiences of the healthcare.
Identifier
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<a href="http://doi.org/10.1097/JPN.0000000000000780" target="_blank" rel="noreferrer noopener">10.1097/JPN.0000000000000780</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).
2023
Adult
Article
Child
Clinical Article
Content Analysis
Decision Making
Diagnosis
Edner A
February List 2024
Funkquist EL
Health Care Personnel
Human
Infant
Interview
Journal of Perinatal & Neonatal Nursing
Lindquist A
Neonatal Intensive Care Unit
Newborn
Newborn Intensive Care
Parent
parenthood
Pilot Study
Powerlessness
Qualitative Research
shame
Terminal Care
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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January 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
January 2018 List
URL Address
<a href="http://doi.org/10.1002/ppul.23840" target="_blank" rel="noreferrer">http://doi.org/10.1002/ppul.23840</a>
Dublin Core
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Title
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Advanced care planning in cystic fibrosis
Publisher
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Pediatric Pulmonology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
cystic fibrosis; 7782-44-7 (oxygen); chest tube; Child; Clinical Article; comfort; durable power of attorney; Female; Forced Expiratory Volume; hemoptysis; Hospitalization; Human; lifespan; living will; Male; outpatient; oxygen; Palliative therapy; Pilot study; pneumothorax; practice guideline; school child; thinking
Creator
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Linnemann RW; Friedman D; Altstein L; Georgiopoulos A; Islam S; Bach K; St John A; Moskowitz SM; Yonker LM
Description
An account of the resource
Background: Advanced care planning (ACP) is recommended for people with cystic fibrosis (CF). To date, a CF-specific consensus statement that would help CF care teams incorporate ACP into clinical practice has not been developed. Additional research on ACP topics and preferences for optimal implementation is needed to support evidence-based incorporation into routine CF care. Objective: To assess ACP experiences and preferences among individuals with CF in order to inform future interventions aimed at improving ACP in CF. Methods: We surveyed 41 patients with CF aged >=12 years participating in a pilot study of a primary palliative care intervention (Coping, goal Assessment, and Relief from Evolving CF Symptoms [CF-CARES]). We assessed 4 domains of ACP: prior thoughts about ACP, comfort with ACP, preferences for ACP, and prior completion of ACP. We also evaluated the impact of disease severity on certain measures. Severe disease was defined as: Forced Expiratory Volume in 1 second (FEV<inf>1</inf>) <30%, >=4 CF hospitalizations in past year, ever had pneumothorax requiring chest tube placement, ever had massive hemoptysis/hemoptysis requiring hospitalization, or current home oxygen use. Results: We found that most participants worry about ACP topics: 92% worry about the impact of CF on their lifespan and 84% worry about what living with CF would be like if they were to get sicker. The majority (52%) had thought at least "somewhat" about what their important goals and wishes would be if their health situation were to worsen. Only 37% had specific wishes about the types of medical treatment they would or wouldn't want at end of life. The vast majority of participants reported feeling very comfortable talking with CF providers about ACP topics. However, only 5% reported previously talking to a CF team member about the care they would want if they became too ill to make decisions on their own. Few participants (11%) had completed a durable power of attorney for health care or living will. Participants overall preferred to have ACP discussions initiated by any member of the CF team who knows them well, during a period of stability when generally healthy but meeting a certain threshold (e.g. >=4 hospitalizations per year or FEV<inf>1</inf> <40%), and in the outpatient setting. Severe disease was not statistically associated with subjects' worry about getting sicker, comfort talking to CF providers about ACP, or setting preferences for ACP. Conclusions: Our results support the need for a consistent approach to ACP for CF patients earlier in the illness course when patients are still generally healthy. People with CF appear to worry about ACP topics, but need more support from the CF team to understand and document their ACP choices. Future guidelines on ACP in CF, as well as CF-specific ACP materials for patients, may help ensure that all individuals with CF benefit from ACP..
Identifier
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<a href="http://doi.org/10.1002/ppul.23840" target="_blank" rel="noreferrer">10.1002/ppul.23840</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).
2017
7782-44-7 (oxygen)
Altstein L
Bach K
chest tube
Child
Clinical Article
Comfort
Cystic Fibrosis
durable power of attorney
Female
Forced Expiratory Volume
Friedman D
Georgiopoulos A
hemoptysis
Hospitalization
Human
Islam S
January 2018 List
Lifespan
Linnemann RW
living will
Male
Moskowitz SM
Outpatient
oxygen
Palliative Therapy
Pediatric Pulmonology
Pilot Study
pneumothorax
Practice Guideline
School Child
St John A
thinking
Yonker LM
-
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 2017 List
Dublin Core
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Title
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Assessing the quality of bereavement care after perinatal death: development and piloting of a questionnaire to assess parents' experiences
Publisher
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Journal Of Obstetrics And Gynecology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Stillbirth; Bereavement Support; Grief; Perinatal Death; Pilot Study; Questionnaire
Creator
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Aiyelaagbe E; Scott RE; Holmes V; Lane E; Heazell AEP
Description
An account of the resource
Understanding parents' experience of care is essential to develop high-quality perinatal bereavement services. This study aimed at developing a questionnaire to identify parents' needs and record their experience of care. The patient experience questionnaire was developed by professionals and parents, and piloted in a tertiary maternity unit. Responses were received from 58 parents. Sensitivity and kindness of staff and time spent with their baby were ranked as 'very important' by 95% of parents. Care in these areas largely met their needs (90%), although 5% of respondents stated that partners could have been more involved. Between 8% and 15% of respondents did not feel that language used at the diagnosis of fetal death was sensitive, clear and unambiguous. Parents did not always receive written information about their care (5%) or post-mortem (13%). Analysis of bereaved parents' responses identified areas for improvement including greater involvement of partners and a need for timely information. Impact statement What is already known on this subject?: Good quality bereavement care after perinatal death reduces the negative emotional, psychological and social effects for parents. Description of parents' experiences is a potential means to improve the quality of perinatal bereavement care. What do the results of this study add?: Parents' needs and experiences of care after perinatal death were recorded using a patient-experience questionnaire designed by a multi-professional team and parents. Staff behaviour, particularly sensitivity and kindness was highly valued by parents. Giving both verbal and written information could be improved. Training is needed for professionals, particularly those who come into contact with bereaved parents less frequently. What are the implications of these findings for clinical practice and/or further research?: Description of parents' priorities and views can be used to identify areas for improvement in perinatal bereavement care. Parents' views should be regularly sought and used to develop local services in an iterative process.
Identifier
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DOI: 10.1080/01443615.2017.1316710
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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
Aiyelaagbe E
August 2017 List
Bereavement Support
Grief
Heazell AEP
Holmes V
Journal Of Obstetrics And Gynecology
Lane E
Perinatal Death
Pilot Study
Questionnaire
Scott RE
Stillbirth
-
Dublin Core
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Title
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May 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
May List 2023
URL Address
<a href="http://doi.org/10.1017/S1478951523000251" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S1478951523000251</a>
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Title
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Assessing well-being in pediatric palliative care: A pilot study about views of children, parents and health professionals
Publisher
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Palliative and Supportive 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
emotional well-being; palliative therapy; pilot study; psychologic assessment; wellbeing; article; child; clinical article; controlled study; cross-sectional study; demography; emotion; female; health practitioner; human; male; Palliative Care; perception; Pilot Projects; school child; vision; visual analog scale
Creator
An entity primarily responsible for making the resource
Toro-Perez D; Camprodon-Rosanas E; Navarro Vilarrubi S; Bolance C; Guillen M; Limonero JT
Description
An account of the resource
OBJECTIVES: Our research aims to compare the perception that children in the pediatric palliative care setting have of their emotional well-being, or that expressed by the parents, with the perception held by the professionals involved in their care. <br/>METHOD(S): In this cross-sectional study, the emotional well-being of 30 children with a mean age of 10.8 years (standard deviation [SD] = 6.1) is evaluated. Children, or parents where necessary, evaluate their situation with a question about emotional well-being on a 0-10 visual analog scale. For each child, a health professional also rates the child's emotional status using the same scale. <br/>RESULT(S): The average child's emotional well-being score provided by children or parents was 7.1 (SD = 1.6), while the average score given by health professionals was 5.6 (SD = 1.2). Children or parents graded the children's emotional well-being significantly higher than professionals (t-test = 4.6, p-value < .001). Health professionals rated the children's emotional well-being significantly lower when the disease status was progressive than when the disease was not (t-test = 2.2, p-value = .037). SIGNIFICANCE OF RESULTS: Children themselves, or their parents, report more positive evaluations of emotional well-being than health professionals. Sociodemographic and disease variables do not seem to have a direct influence on this perception, rather it is more likely that children, parents, and professionals focus on different aspects and that children or parents need to hold on to a more optimistic vision. We must emphasize that when this difference is more pronounced, it can be a warning sign that further analysis is required of the situation.
Identifier
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<a href="http://doi.org/10.1017/S1478951523000251" target="_blank" rel="noreferrer noopener">10.1017/S1478951523000251</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).
2023
Article
Bolance C
Camprodon-Rosanas E
Child
Clinical Article
Controlled Study
Cross-sectional Study
Demography
Emotion
emotional well-being
Female
Guillen M
health practitioner
Human
Limonero JT
Male
May List 2023
Navarro Vilarrubi S
Palliative And Supportive Care
Palliative Care
Palliative Therapy
Perception
Pilot Projects
Pilot Study
psychologic assessment
School Child
Toro-Perez D
vision
Visual Analog Scale
Wellbeing
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
April 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2018 List
URL Address
<a href="http://doi.org/10.1186/s12904-018-0274-8" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-018-0274-8</a>
Dublin Core
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Title
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Barriers and facilitators to the implementation of a paediatric palliative care team
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
health care personnel; palliative therapy; Child; Only Child; Palliative Care; Pilot Projects; human experiment; major clinical study; pilot study; expectation; concrete; child; human; female; male; pediatrics; article; awareness; patient satisfaction; tertiary health care
Creator
An entity primarily responsible for making the resource
Verberne LM; Kars MC; Schepers SA; Schouten-Van Meeteren AYN; Grootenhuis MA; Van Delden JJM
Description
An account of the resource
Background: Over the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC). However, implementing a PPCT into an organisation is a challenge. The objective of this study was to identify barriers and facilitators reported by healthcare professionals (HCPs) in primary, secondary or tertiary care for implementing a newly initiated multidisciplinary PPCT to bridge the gap between hospital and home. Methods: The Measurement Instrument for Determinants of Innovations (MIDI) was used to assess responses of 71 HCPs providing PPC to one or more of the 129 children included in a pilot study of a PPCT based at a university children's hospital. The MIDI (29 items) assessed barriers and facilitators to implementing the PPCT by using a 5-point scale (completely disagree to completely agree) and additional open-ended questions. Items to which >=20% of participants responded with 'totally disagree/disagree' and >=80% responded with 'agree/totally agree' were considered as barriers and facilitators, respectively. A general inductive approach was used for open-ended questions. Results: Reported barriers to implementing a PPCT were related to the HCP's own organisation (e.g., no working arrangements related to use of the intervention [PPCT] registered, other organisational changes such as merger going on). Reported facilitators were mainly related to the intervention (correctness, simplicity, observability and relevancy) and the user scale (positive outcome expectations, patient satisfaction) and only once to the organisation scale (information accessibility). Additionally, HCPs expressed the need for clarity about tasks of the PPCT and reported having made a transition from feeling threatened by the PPCT to satisfaction about the PPCT. Conclusion: Positive experiences with the PPCT are a major facilitator for implementing a PPCT. Tailored organisational strategies such as working arrangements by management, concrete information about the PPCT itself and the type of support provided by the PPCT should be clearly communicated to involved HCPs to increase awareness about benefits of the PPCT and ensure a successful implementation. New PPCTs need protection and resources in their initial year to develop into experienced and qualified PPCTs.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-018-0274-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0274-8</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
April 2018 List
Article
Awareness
BMC Palliative Care
Child
concrete
Expectation
Female
Grootenhuis MA
Health Care Personnel
Human
Human Experiment
Kars MC
Major Clinical Study
Male
Only Child
Palliative Care
Palliative Therapy
Patient Satisfaction
Pediatrics
Pilot Projects
Pilot Study
Schepers SA
Schouten-Van Meeteren AYN
tertiary health care
van Delden JJM
Verberne LM
-
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
February 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
February 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.419" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.419</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
Challenges in Pediatric Advance Care Discussions Between Health Care Professionals and Parents of Children with a Life-Limiting Condition: A Qualitative Pilot Study
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
advance care planning; death; Germany; semi structured interview; shared decision making; pilot study; morality; conference abstract; human; child; female; male; clinical article; palliative therapy; conversation
Creator
An entity primarily responsible for making the resource
Hein K; Monz A; Daxer M; Heitkamp N; Knochel K; Jox R; Borasio GD; Fuehrer M
Description
An account of the resource
Objectives: Research has shown that advance care planning concepts for adults need to be revised and adapted to be applicable to pediatric situations. A consistent approach to pediatric advance care planning (pACP) is still missing. The study aimed to (1) identify challenges during pediatric advance care discussions and (2) explore the perception of participants about pACP with the final goal of (3) developing a pACP conversation guideline.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.419" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.419</a>
2018
Advance Care Planning
Borasio GD
Child
Clinical Article
conference abstract
Conversation
Daxer M
Death
February 2019 List
Female
Fuehrer M
Germany
Hein K
Heitkamp N
Human
Journal of Pain and Symptom Management
Jox R
Knochel K
Male
Monz A
Morality
Palliative Therapy
Pilot Study
Semi Structured Interview
shared decision making
-
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 2016 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
Community-based Pediatric Palliative Care For Health Related Quality Of Life, Hospital Utilization And Costs Lessons Learned From A Pilot 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
2016
Subject
The topic of the resource
Medical Complexity; Health Related Quality Of Life; Generic Core Scales; Impact; Hospital Utilization; Pilot Study; Pediatric Palliative Care; Reliability; Health Policy & Services; Illness; Cost-effectiveness; Home; Validity; Vulnerable Children; Pedsql(tm); Chronic Disease; United States; Health Care Sciences & Services
Chronic Disease; Cost-effectiveness; Health Related Quality Of Life; Hospital Utilization; Pediatric Palliative Care; Pilot Study
Creator
An entity primarily responsible for making the resource
J Goldhagen
Description
An account of the resource
BACKGROUND:
Children with chronic complex-medical conditions comprise a small minority of children who require substantial healthcare with major implications for hospital utilization and costs in pediatrics. Community-Based Pediatric Palliative Care (CBPPC) provides a holistic approach to patient care that can improve their quality of life and lead to reduced costs of hospital care. This study's purpose was to analyze and report unpublished evaluation study results from 2007 that demonstrate the potential for CBPPC on Health Related Quality of Life (HRQoL) and hospital utilization and costs in light of the increasing national focus on the care of children with complex-medical conditions, including the Affordable Care Act's emphasis on patient-centered outcomes.
METHODS:
A multi-method research design used primary data collected from caregivers to determine the Program's potential impact on HRQoL, and administrative data to assess the Program's potential impact on hospital utilization and costs. Caregivers (n=53) of children enrolled in the Northeast Florida CBPPC program (Community PedsCare) through the years 2002-2007 were recruited for the Health Related Quality of Life (HRQoL) study. Children (n=48) enrolled in the Program through years 2000-2006 were included in the utilization and cost study.
RESULTS:
HRQoL was generally high, and hospital charges per child declined by $1203 for total hospital services (p=.34) and $1047 for diagnostic charges per quarter (p=0.13). Hospital length of stay decreased from 2.92 days per quarter to 1.22 days per quarter (p<.05).
CONCLUSION:
The decrease in hospital utilization and costs and the high HRQoL results indicate that CBPPC has the potential to influence important outcomes for the quality of care available for children with complex-medical conditions and their caregivers.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1186/s12904-016-0138-z
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).
2016
August 2016 List
BMC Palliative Care
Chronic Disease
Cost-effectiveness
Generic Core Scales
Health Care Sciences & Services
Health Policy & Services
Health Related Quality Of Life
Home
Hospital Utilization
Illness
Impact
J Goldhagen
Medical Complexity
Pediatric Palliative Care
Pedsql(tm)
Pilot Study
Reliability
United States
Validity
Vulnerable Children
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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March 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.305" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.305</a>
Dublin Core
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Title
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Feasibility and Acceptability of Recruiting Very Young Hospitalized Children Receiving Palliative Care to an Integrative Therapy Study (S743)
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
2020
Subject
The topic of the resource
adolescent; child; conference abstract; controlled study; critically ill patient; feasibility study; female; follow up; foster care; hospitalized child; human; infant; major clinical study; male; palliative therapy; pilot study; Reiki
Creator
An entity primarily responsible for making the resource
Thrane S; Shaner V; Allmendinger-Goertz K; Ibach M; Friebert S
Description
An account of the resource
Objectives: * Discuss whether the Reiki intervention was feasible to implement with this population of very young hospitalized children receiving palliative care. * Discuss why parents thought the Reiki intervention was helpful to their child. Original Research Background: Previous work showed Reiki was feasible and acceptable to children ages 7-16 receiving palliative care at home. Because they are in a challenging developmental stage, very young children are seldom studied, especially when examining a hands-on intervention such as Reiki, a light touch therapy. Research Objectives: To assess the feasibility and acceptability of implementing a Reiki therapy intervention with children ages 1 to 5 years. Methods. This was a quasi-experimental one-group pilot study involving children ages 1-5 years, receiving palliative care, and expected to be hospitalized for three or more weeks. Children were excluded if they turned 6 during the study, were in foster care, or were critically ill. Children were screened and families approached if appropriate. At follow up, parents were asked if they would participate again and if they would continue Reiki sessions. Feasibility was calculated by the proportion of families approached who enrolled and completed at least 5/6 Reiki sessions and all measures. Results. Between March 2017 and July 2019, 90 children were screened, 28 families approached, and 16 families (57%) consented. Reasons for declining included concern that Reiki might interfere with other treatments, and the child didn’t like unfamiliar staff. Of those who consented, 14/16 (87.5%) completed at least 5/6 sessions and all measures. Halfway through the study, one child became critically ill and died due to their illness and another parent withdrew. Of the 14 that completed data collection,
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.305" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.305</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adolescent
Allmendinger-Goertz K
Child
conference abstract
Controlled Study
Critically Ill Patient
Feasibility Study
Female
Follow Up
Foster Care
Friebert S
Hospitalized Child
Human
Ibach M
Infant
Journal of Pain and Symptom Management
Major Clinical Study
Male
March 2020 List
Palliative Therapy
Pilot Study
Reiki
Shaner V
Thrane S
-
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/10.1016/j.pecinn.2023.100173" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.pecinn.2023.100173</a>
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Title
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Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation
Publisher
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PEC Innovation
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; article; cohort analysis; female; human; male; quality of life; palliative therapy; Ventilators, Mechanical; tracheostomy; content analysis; pilot study; respiratory failure; adolescent; decision making; intensive care unit; semi structured interview; pediatric patient; length of stay; counseling; artificial ventilation; home ventilation; Question Prompt List
Creator
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Boss RD; Vo HH; Jabre NA; Shepard J; Mercer A; McDermott A; Lanier CL; Ding Y; Wilfond BS; Henderson CM
Description
An account of the resource
Objective: To pilot feasibility and acceptability of HomeVENT, a systematic approach to family-clinician decision-making about pediatric home ventilation. Methods: Parents and clinicians of children facing home ventilation decisions were enrolled at 3 centers using a pre/post cohort design. Family interventions included: 1) a website describing the experiences of families who previously chose for and against home ventilation 2) a Question Prompt List (QPL); 3) in-depth interviews exploring home life and values. Clinician HomeVENT intervention included a structured team meeting reviewing treatment options in light of the family's home life and values. All participants were interviewed one month after the decision. Results: We enrolled 30 families and 34 clinicians. Most Usual Care (14/15) but fewer Intervention (10/15) families elected for home ventilation. Families reported the website helped them consider different treatment options, the QPL promoted discussion within the family and with the team, and the interview helped them realize how home ventilation might change their daily life. Clinicians reported the team meeting helped clarify prognosis and prioritize treatment options. Conclusions: The HomeVENT pilot was feasible and acceptable. Innovation: This systematic approach to pediatric home ventilation decisions prioritizes family values and is a novel method to increase the rigor of shared decision-making in a rushed clinical environment.
Identifier
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<a href="http://doi.org/10.1016/j.pecinn.2023.100173" target="_blank" rel="noreferrer noopener">10.1016/j.pecinn.2023.100173</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
Adolescent
Article
Artificial Ventilation
August List 2025
Boss RD
Child
Cohort Analysis
Content Analysis
Counseling
Decision Making
Ding Y
Female
Henderson CM
home ventilation
Human
Intensive Care Unit
Jabre NA
Lanier CL
Length Of Stay
Male
McDermott A
Mercer A
Palliative Therapy
PEC Innovation
pediatric patient
Pilot Study
Quality Of Life
Question Prompt List
respiratory failure
Semi Structured Interview
Shepard J
Tracheostomy
Ventilators, Mechanical
Vo HH
Wilfond BS
-
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
February 2024 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 List 2024
URL Address
<a href="http://doi.org/10.1089/jpm.2023.0292" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0292</a>
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Title
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Implementation of an Innovative Palliative Care Screening Tool in the Pediatric Intensive Care Unit: A Pilot Study
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; article; controlled study; female; human; major clinical study; male; chronic disease; palliative therapy; comorbidity; pilot study; pediatric intensive care unit; congenital malformation; intensive care; prospective study; tertiary health care
Creator
An entity primarily responsible for making the resource
Hodge CH; Kerris EW; Freeman MC; Eckman ST; Deeter DM; Even KM
Description
An account of the resource
Background: Pediatric palliative care (PPC) can improve the quality of care provided to critically ill children with a high risk of morbidity and mortality. Early identification of patients admitted to the pediatric intensive care unit (PICU) who may benefit from PPC involvement is essential. Objectives: To create a brief screening tool, the Pediatric Intensive Care-Pediatric Palliative Care Screen, identifying PICU patients most likely to benefit from PPC involvement and to assess if weekly screening with this screening tool increases the number of PPC consults placed in the PICU. Methods: This is a prospective investigational single-center study in a 24-bed PICU at a U.S. tertiary care children's hospital. Weekly screening was completed by two clinicians for a six-month period between April and October 2022. Results: A total of 162 screens were completed on 124 individual patients; 47 screens were positive (29%), and 115 were negative (71%). Fourteen new PPC consults were placed from the PICU with one PPC consult for every 36.7 compared with one PPC for every 41.4 admissions the previous year. Of the positive screens, 68% had two or more comorbidities at the time of PICU admission versus 26% of negative screens (p < 0.001). Technology dependence (57% vs. 5%, p < 0.001) and presence of congenital defects (26% vs. 10%, p = 0.013) were significantly more common among positive screens. Conclusions: Weekly screening with a short, 7-question screening tool can identify PICU patients most likely to benefit from a PPC consult. Patients with chronic illnesses and baseline comorbidities are most likely to screen positive.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2023.0292" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0292</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
Article
Child
Chronic Disease
Comorbidity
Congenital Malformation
Controlled Study
Deeter DM
Eckman ST
Even KM
February List 2024
Female
Freeman MC
Hodge CH
Human
Intensive Care
Journal of Palliative Medicine
Kerris EW
Major Clinical Study
Male
Palliative Therapy
Pediatric Intensive Care Unit
Pilot Study
Prospective Study
tertiary health care
-
Dublin Core
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Title
A name given to the resource
2020 Oncology List
Text
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Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1016/j.ctim.2019.102263" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ctim.2019.102263</a>
Dublin Core
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Title
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Massage therapy for symptom reduction and improved quality of life in children with cancer in palliative care: A pilot study
Publisher
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Complementary Therapies in 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; human; palliative therapy; controlled study; female; male; article; Quality of Life; adolescent; clinical article; pain; Massage; follow up; quantitative study; pilot study; expectation; leukemia; lymphoma; sarcoma; carcinoma; pain measurement; patient worry
Creator
An entity primarily responsible for making the resource
Genik L M; McMurtry C M; Marshall S; Rapoport A; Stinson J
Description
An account of the resource
Background: For children with cancer in palliative care, pain and worry are common and frequently under-managed, which negatively impacts quality of life (QOL). Massage therapy (MT) can lead to reduced pain in children with chronic illnesses. Children with cancer have experienced lower anxiety after MT. No studies have examined the effects of MT in pediatric oncology patients receiving palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ctim.2019.102263" target="_blank" rel="noreferrer noopener">10.1016/j.ctim.2019.102263</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).
2020
Adolescent
Article
Carcinoma
Child
Clinical Article
Complementary Therapies in Medicine
Controlled Study
Expectation
Female
Follow Up
Genik L M
Human
Leukemia
Lymphoma
Male
Marshall S
Massage
McMurtry C M
Oncology 2020 List
Pain
Pain Measurement
Palliative Therapy
patient worry
Pilot Study
Quality Of Life
Quantitative Study
Rapoport A
Sarcoma
Stinson J
-
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
May 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
May 2020 List
URL Address
<a href="http://doi.org/10.1177/0269216319874689" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319874689</a>
Dublin Core
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Title
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Medical and end-of-life decision making in adolescents' pre-heart transplant: A descriptive pilot study
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
adolescent; adult; Advance Care Planning; article; attention; child; clinical article; cross-sectional study; decision making; female; heart graft; human; male; patient participation; pilot study; prognosis; school child; young adult
Creator
An entity primarily responsible for making the resource
Cousino M K; Miller V A; Smith C; Uzark K; Lowery R; Rottach N; Blume E D; Schumacher K R
Description
An account of the resource
BACKGROUND: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and end-of-life decision-making preferences. AIM: (1) To examine adolescent/young adult decision-making involvement specific to heart transplant listing, and (2) to characterize their preferences specific to medical and end-of-life decision making. DESIGN: This cross-sectional research study utilized survey methods. Data were collected from October 2016 to March 2018. SETTING/PARTICIPANTS: Twelve adolescent and young adult patients listed for heart transplant (ages = 12-19 years) and one parent for each were enrolled at a single-center, US children's hospital. RESULTS: Consistent with their preferences, the majority of adolescent/young adult participants (82%) perceived a high level of involvement in the decision to be listed for transplant. Patient involvement in this decision was primarily by way of seeking advice or information from their parents and being asked to express their opinion from parents. Despite a preference among patients to discuss their prognosis and be involved in end-of-life decision making if seriously ill, only 42% of patients had discussed their end-of-life wishes with anyone. Few parents recounted having such discussions. Preferences regarding the timing and nature of end-of-life decision-making discussions varied. CONCLUSIONS: Although young people are involved in the decision to pursue heart transplantation, little attention is paid to involving them in discussions regarding end-of-life decision making in a manner that is consistent with individual preferences.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216319874689" target="_blank" rel="noreferrer noopener">10.1177/0269216319874689</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adolescent
Adult
Advance Care Planning
Article
Attention
Blume E D
Child
Clinical Article
Cousino M K
Cross-sectional Study
Decision Making
Female
heart graft
Human
Lowery R
Male
May 2020 List
Miller V A
Palliative Medicine
Patient Participation
Pilot Study
Prognosis
Rottach N
School Child
Schumacher K R
Smith C
Uzark K
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2024 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 List 2024
URL Address
<a href="http://doi.org/10.1017/S1478951523001852" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S1478951523001852</a>
Dublin Core
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Title
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Reiki intervention for supporting healthcare professional care behaviors in pediatric palliative care: A pilot study
Publisher
An entity responsible for making the resource available
Palliative and Supportive 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
burnout; care behavior; health care personnel; palliative therapy; psychologist; Reiki; alternative medicine; article; child; child psychology; clinical practice; clinical psychology; controlled study; diastolic blood pressure; emotional stress; heart rate; human; Italy; nurse; oxygen saturation; Palliative Care; Pilot Projects; pilot study; self care; special situation for pharmacovigilance; systolic blood pressure; work environment; workplace
Creator
An entity primarily responsible for making the resource
Zucchetti G; Ciappina S; Bottigelli C; Campione G; Parrinello A; Piu P; Lijoi S; Quarello P; Fagioli F
Description
An account of the resource
OBJECTIVES: Pediatric healthcare professionals (HCPs) working in a palliative setting may experience challenges during their clinical practice in addressing the complex end-of-life phase of children and their families. Nurses, especially, have a frontline role in providing assistance, thereby becoming at risk of physical and psychological burden. Pediatric psychologists have an ethical responsibility to help colleagues by proposing self-care interventions that will improve their well-being and, indirectly, the work climate. This study investigated the impact of a complementary therapy, delivered by a pediatric psychologist and a nurse, on physical and psychological variables among nurses at the Paediatric Hospice of the Regina Margherita Children's Hospital in Italy. <br/>METHOD(S): Thirty-five nurses participated in 5 weeks of Reiki sessions for an overall total of 175 sessions. The effect of the sessions was analyzed through a paired t-test analysis comparing the values of heart rate, oxygen saturation, and systolic and diastolic pressure collected before and after each session. The same test was conducted comparing the values of the 3 burnout subscales for each of the 35 nurses collected before the beginning of the first session with those collected at the end of the last session 2 months later. <br/>RESULT(S): Results underlined a positive short-term effect with a significant decrease in heart rate before and after each session (t = 11.5, p < .001) and in systolic pressure (t = 2, p < .05). In addition, a decrease in emotional exhaustion symptoms was found (t = 2.3, p < .05) at the end of the intervention. SIGNIFICANCE OF RESULTS: Reiki could be a valid strategy to complement traditional pediatric psychology clinical practice designed to protect HCPs from emotional and physical demands and to create a more supportive workplace for staff and patients alike.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/S1478951523001852" target="_blank" rel="noreferrer noopener">10.1017/S1478951523001852</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).
2023
alternative medicine
Article
Bottigelli C
Burnout
Campione G
care behavior
Child
Child Psychology
Ciappina S
Clinical Practice
clinical psychology
Controlled Study
diastolic blood pressure
Emotional Stress
Fagioli F
Health Care Personnel
Heart Rate
Human
Italy
Lijoi S
March List 2024
Nurse
oxygen saturation
Palliative And Supportive Care
Palliative Care
Palliative Therapy
Parrinello A
Pilot Projects
Pilot Study
Piu P
Psychologist
Quarello P
Reiki
Self Care
special situation for pharmacovigilance
systolic blood pressure
work environment
Workplace
Zucchetti G
-
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/10.1017/cjn.2016.8" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/cjn.2016.8</a>
Dublin Core
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Title
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The Incidence and Evolution of Parkinsonian Rigidity in Rett Syndrome: A Pilot Study
Publisher
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Canadian Journal of Neurological Sciences
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
adolescent; age; pharmacokinetics; neck; major clinical study; priority journal; scoring system; pilot study; quantitative study; cohort analysis; cross-sectional study; dopamine; prospective study; human; article; child; female; adult; disease severity; speech; dystonia; Rett syndrome; methyl CpG binding protein 2; methyl CpG binding protein 2/ec [Endogenous Compound]; mecp2; rigidity; 5 hydroxyindoleacetic acid; ankle; cerebrospinal fluid; Dopamine; genetic susceptibility; homovanillic acid; homovanillic acid/ec [Endogenous Compound]; hva; incidence; missense mutation; mobilization; muscle rigidity; muscle tone; musculoskeletal disease assessment; parkinsonism; Rett syndrome rigidity distribution score; walking difficulty; tone and motor problems; trajectory; characteristics; rigidity
Creator
An entity primarily responsible for making the resource
Humphreys P; Barrowman N
Description
An account of the resource
Background: Patients with Rett syndrome (RTT) may demonstrate parkinsonian features. Here, we report a preliminary cross-sectional and prospective evaluation of the evolution, regional distribution, and eventual incidence of rigid tone in a cohort of MECP2 mutation-positive patients. Methods: In 51 participants, muscle tone rigidity in extremity regions and neck plus hypomimia were quantified using an RTT rigidity distribution (RTTRD) score with a range of 0 to 15. RTTRD scores were correlated with age, ability to walk and speak, mutation type, and, in a small subgroup (n=9), cerebrospinal fluid (CSF) homovanillic acid (HVA) and 5-hydroxyindole-acetic acid levels. Results: Participant ages ranged from 2 years and 5 months, to 54 years. Rigidity was found in 43/51 (84.3%); it appeared as early as age 3, increased in extent with age, and was present in all participants aged >13. Ankle region rigidity appeared first, followed by proximal legs, arms, neck, and face. Ambulatory participants (n=21) had lower RTTRD scores than nonambulatory (n=30; p=0.003). We found a trend to lower scores in participants with retained speech (n=13) versus those with none (n=38; p=0.074), and no difference in scores for those with truncating (n=25) versus missense mutations (n=22; p=0.387). RTTRD scores correlated negatively with CSF HVA levels (R=-0.83; p=0.005), but not with 5-hydroxyindole-acetic acid levels (R=-0.45; p=0.22). Conclusions: Although assessment of muscle tone is somewhat subjective and the RTTRD has not been validated, this study nevertheless suggests that parkinsonian rigidity in RTT is common and frequently increases in extent with age; its severity correlates directly with impaired ambulation and inversely with CSF HVA levels. Copyright © The Canadian Journal of Neurological Sciences Inc. 2016.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/cjn.2016.8" target="_blank" rel="noreferrer noopener">10.1017/cjn.2016.8</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).
2016
5 hydroxyindoleacetic acid
Adolescent
Adult
Age
ankle
Article
Barrowman N
Canadian Journal of Neurological Sciences
Cerebrospinal Fluid
characteristics
Child
Cohort Analysis
Cross-sectional Study
Disease Severity
Dopamine
Dystonia
Female
genetic susceptibility
homovanillic acid
homovanillic acid/ec [Endogenous Compound]
Human
Humphreys P
hva
Incidence
Major Clinical Study
mecp2
methyl CpG binding protein 2
methyl CpG binding protein 2/ec [Endogenous Compound]
missense mutation
mobilization
muscle rigidity
muscle tone
musculoskeletal disease assessment
neck
parkinsonism
Pharmacokinetics
Pilot Study
Priority Journal
Prospective Study
Quantitative Study
Rett syndrome
Rett syndrome rigidity distribution score
rigidity
scoring system
Speech
tone and motor problems
Trajectory
walking difficulty
-
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 2017 List
Dublin Core
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Title
A name given to the resource
Training Pediatric Fellows In Palliative Care: A Comparison Of Simulation-based Training And Didactic Education
Publisher
An entity responsible for making the resource available
Pediatric Blood And Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Curriculum; Palliative Therapy; Simulation; Cardiology; Child; Clinical Trial; Comfort; Communication Skill; Controlled Clinical Trial; Controlled Study; Family; Female; Hematology; Human; Human Versus Animal Comparison; Male; Medical Education; Neonatology; Nonhuman; Oncology; Physician; Pilot Study; Resuscitation; Single Blind Procedure
Creator
An entity primarily responsible for making the resource
Brock K; Cohen H; Sourkes B; Good J; Halamek L
Description
An account of the resource
Background: Although palliative care (PC) communication skills can be learned through trial and error, pediatric fellows have few opportunities to practice communication, and learning by doing may be harmful for families. Despite these issues and recommendations from professional societies, most fellowship programs either lack formal training or provide only lecture-based PC education. Simulation-based training has been successful in other high-stakes communication encounters, and has the potential to change PC education. Objectives: In this pilot study,we assessed: (1) the relative effectiveness of simulation-based vs didactic education, (2) communication skill retention, and (3) effect on PC consultation rates. Design/Method: Thirty-five pediatric fellows in hematology/oncology, cardiology, critical care, and neonatology at two institutions enrolled: 17 in the simulation-based group (single institution) and 18 in the didactic education group (second institution). Simulation-based subjects participated in a 2-day program over 3 months (three simulations and videotaped PC panel) where scenarios focused on: introducing PC, discussing goals of care and resuscitation preferences, and mediating disagreement between the family and medical team. Didactic-education subjects received written education designed to be similar in content and time. (1) Fellow selfassessments in PC comfort, knowledge, and adequacy of medical education, were measured at baseline, post-intervention and three months; mean between-group differences for each outcome measure were assessed. (2) Two blinded external reviewers rated each simulation-group fellow's encounters on nine communication domains. Within-group changes over time were assessed. (3) The simulation-based site's PC consultation rate was compared in the six months pre- and post-intervention. Results: Compared to the didactic group, subjects in the simulation-based group improved in PC comfort/ self-efficacy (16.4 vs 6.1, DELTA10.3, p = 0.003) and perceived adequacy of medical education (7.4 vs 0.4, DELTA7.1, p<0.001). Both groups had improved PC knowledge; this was not different between groups (1.1 vs 1.8, DELTA-0.7, p = 0.20). Reviewers noted non-sustained improvement in four domains: relationship building (p = 0.01), opening discussion (p = 0.03), gathering information (p = 0.01), and communicating accurate information (p = 0.04). PC consultation rate increased 64%, an improvement when normalized to average daily census (p = 0.04). Simulation-group fellows more strongly agreed that they would use the education in practice (p = 0.04), and recommended that educational methodology (p = 0.004). Conclusion: Well-trained physicians are necessary to providing high quality PC. This simulation-based curriculum is an effective method for improving PC comfort, education, and consults, although it does not lead to sustained improvements in communication competence or knowledge. More frequent, deliberate practice is likely needed to lead to sustained improvements in communication competence.
Identifier
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10.1002/pbc.26591
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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
Brock K
Cardiology
Child
Clinical Trial
Cohen H
Comfort
Communication Skill
Controlled Clinical Trial
Controlled Study
Curriculum
Family
Female
Good J
Halamek L
Hematology
Human
Human Versus Animal Comparison
Male
Medical Education
Neonatology
Nonhuman
October 2017 List
Oncology
Palliative Therapy
Pediatric Blood and Cancer
Physician
Pilot Study
Resuscitation
Simulation
Single Blind Procedure
Sourkes B
-
Dublin Core
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Title
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November 2022 List
Text
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Citation List Month
November 2022 List
URL Address
<a href="http://doi.org/10.1186/s12913-022-08442-z" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12913-022-08442-z</a>
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Title
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Use of the interRAI PEDS HC in Children Receiving Home Care in Ontario, Canada
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BMC Health Services Research
Date
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2022
Subject
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Home Care; Ontario; Child; Epidemiology; Female; Human; Male; Palliative Therapy; Pilot Study; Prevalence
Creator
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Thorburn-Winsor E; Doherty M; Jones A; Vadeboncoeur C
Description
An account of the resource
BACKGROUND: There is no standard assessment tool for pediatric home care recipients in Canada, limiting the availability of comparable, population-based data. The objective of this study was to describe pediatric home care recipients who were part of a pilot implementation of the interRAI Pediatric Home Care Assessment Form (PEDS-HC) among medically complex children referred to home care agencies in three regions in Ontario, Canada. METHOD(S): All 14 agencies providing home care to children in Ontario were invited to participate in the pilot project, and 9 participated in an education session. Three of these agencies used the PEDS-HC during the pilot implementation between February 2018 and March 2020. We used de-identified data to describe the demographics, home care needs, and diagnoses of pediatric home care recipients. RESULT(S): The sample of 474 assessments was predominantly male (60.34%), with an average age at assessment of 12.36years (SD 4.56). Most (78.48%) reported English as their primary language. Most children assessed had between two and eight medical diagnoses. Diagnoses reported varied: gastrointestinal, musculoskeletal, respiratory and neurological conditions were most common. The prevalence of urinary incontinence (40.1%) and bowel incontinence (70.9%) were high. Over 60% of children were rarely or only sometimes understood. A majority of children had adequate hearing (83.5%) and vision (68.6%). Extensive services were being provided in 10% of children assessed. Most children received care both at school and at home (70.89%), with 20.89% receiving home care only. CONCLUSION(S): The PEDS-HC provides a detailed, standardised descriptive profile of medically complex children receiving home care. Expanding use of PEDS-HC would promote consistency in care planning and delivery on the patient level, enable cross-jurisdictional comparisons, and inform utilization tracking and health care funding decisions on the organization and provincial levels.Copyright © 2022. The Author(s).
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<a href="http://doi.org/10.1186/s12913-022-08442-z" target="_blank" rel="noreferrer noopener">10.1186/s12913-022-08442-z</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).
Child
Female
Male
2022
BMC Health Services Research
Doherty M
Epidemiology
Home Care
Human
Jones A
November 2022 List
Ontario
Palliative Therapy
Pilot Study
Prevalence
Thorburn-Winsor E
Vadeboncoeur C
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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October 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2019 List
URL Address
<a href="http://doi.org/10.1177/0269216319867214" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319867214</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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Use of time in people with a life-limiting illness: A longitudinal cohort feasibility pilot study
Publisher
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Palliative Medicine
Date
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2019
Subject
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adult; article; child; cohort analysis; female; human; male; palliative therapy; controlled study; clinical article; palliative care; quality of life; caregiver; feasibility study; outpatient; accelerometry; acceptability; Australia; burden; cohort study; European Quality of Life 5 Dimensions Questionnaire; Feasibility; Karnofsky Performance Status; multimedia; numeric rating scale; pilot study; recall; time-use
Creator
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Jones T A; Olds T S; Currow D C; Williams M T
Description
An account of the resource
Background: To date, time-use studies in palliative care have been limited to exploration of time commitments of caregivers. Understanding time-use in people with a life-limiting illness might provide insight into disease progression, symptom management and quality of life. Aim(s): To determine the feasibility of a repeated-measures, time-use study in people with a life-limiting illness, and their primary caregivers, and to explore associations between time-use and perceived quality of life. Design(s): An observational repeated-measures feasibility pilot study. A priori criteria were established for study uptake (70%), retention (80%) and study value/burden (7 Numerical Rating Scale 0-10). Burden and value of the study, use of time (Multimedia Activity Recall for Children and Adults with adjunctive accelerometry) and quality of life data (EuroQol-5 Dimension-5-Level Health Questionnaire and Australia-modified Karnofsky Performance Status scale) were assessed at time-points across five consecutive months. Setting/participants: People living with a life-limiting illness and caregivers recruited from Southern Adelaide Palliative Services outpatient clinics. Result(s): A total of 10 participants (2 caregivers and 8 people with a life-limiting illness) enrolled in the study. All but one of the criteria thresholds was met: 66% of participants who consented to be screened were enrolled in the study, 80% of enrolled participants (n = 8) completed all assessments (two participants died during the study) and mean Numerical Rating Scale scores for acceptable burden and value of the study exceeded the criteria thresholds at every time-point. Conclusion(s): A repeated-measures time-use study design is feasible and was not unduly burdensome for caregivers and people living with a life-limiting illness. Copyright © The Author(s) 2019.
Identifier
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<a href="http://doi.org/10.1177/0269216319867214" target="_blank" rel="noreferrer noopener">10.1177/0269216319867214</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
accelerometry
acceptability
Adult
Article
Australia
burden
Caregiver
Child
Clinical Article
Cohort Analysis
cohort study
Controlled Study
Currow D C
European Quality of Life 5 Dimensions Questionnaire
Feasibility
Feasibility Study
Female
Human
Jones T A
Karnofsky Performance Status
Male
multimedia
numeric rating scale
October 2019 List
Olds T S
Outpatient
Palliative Care
Palliative Medicine
Palliative Therapy
Pilot Study
Quality Of Life
Recall
time-use
Williams M T