1
40
14
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Dublin Core
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Title
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Special Edition #2 2022 List
Text
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Special Edition #2
URL Address
<a href="http://doi.org/10.1089/jpm.2020.0131" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2020.0131</a>
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Title
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Identifying as a Good Parent: Considering the Communication Theory of Identity for Parents of Children Receiving Palliative Care
Publisher
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Journal of Palliative Medicine
Date
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2021
Subject
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Adolescence; Child; Communication; Compassion; Conceptual Framework; Coping; Family Centered Care; Male; Palliative Care; Parental Attitudes; Parenting; Parents; Pediatric Care; Personality; Professional-Family Relations; Social Identity; Stress; Support; Theoretical models
Creator
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Weaver MS; Hinds PS; Kellas JK; Hecht ML
Description
An account of the resource
Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in their parenting role but also depict struggling under the intense weight of parental duty. Objectives and Design: Through this case study, the Communication Theory of Identity (CTI) provides a framework for conceptualizing how palliative care teams can help parents cope with this reality. CTI views communication with care teams as formative in the development and enablement of parental perceptions of their "good parenting" role. Results: Palliative care teams may consider the four frames of identity (personal, enacted, relational, and communal) as meaningful dimensions of the parental pursuit to care well for an ill child. Conclusion: Palliative care teams may consider compassionate communication about parental roles to support the directional virtues of multilayered dynamic parental identity.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2020.0131" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0131</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).
2021
2022 Special Edition 2 - Parent Perspectives
Adolescence
Child
Communication
compassion
Conceptual Framework
Coping
Family Centered Care
Hecht ML
Hinds PS
Journal of Palliative Medicine
Kellas JK
Male
Palliative Care
Parental Attitudes
Parenting
Parents
Pediatric Care
Personality
Professional-family Relations
Social Identity
Stress
Support
Theoretical models
Weaver MS
-
Dublin Core
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Title
A name given to the resource
April 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
April List 2023
URL Address
<a href="https://www.proquest.com/openview/355f4d9dd4d9279271658e52340a3bd4/1?pq-origsite=gscholar&cbl=1606338" target="_blank" rel="noreferrer noopener">https://www.proquest.com/openview/355f4d9dd4d9279271658e52340a3bd4/1?pq-origsite=gscholar&cbl=1606338 http://doi.org/</a>
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Title
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Health Professionals' Views on Pediatric Palliative Care: A Mixed Methods Systematic Review
Publisher
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International Journal of Caring Sciences
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Palliative Care; Professional-Family Relations; Terminal Care; Communication; Collaboration; Hospitals; Attitude of Health Personnel; Professional-Patient Relations; Health Services Accessibility; Human; Education; Reward; Evaluation; Pediatric Care; PubMed; Communities; Multidisciplinary Care Team; Systematic Review; Multimethod Studies
Creator
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Anastasopoulou E; Dousis E
Description
An account of the resource
Introduction: Providing care for children in the end of life entails special challenges and exceptional requirements for all health professionals involved. Aim: The aim of the study is to explore the views of health professionals about pediatric palliative care. Methods: Systematic review of published relevant studies in PubMed and Scopus. The bibliography search took place for articles published from 2017 to 2022. The study included articles on qualitative, quantitative or mixed studies of health professionals in hospitals or in the community that provided pediatric palliative care to people <25 years of age, published from 2015 onwards, exploring their views on palliative care. Results: The results of 15 studies performed on 1,505 health professionals showed that their views focused on the rewards gained and challenges experienced from providing pediatric palliative care, the relationship they develop with the child and family, the collaboration and role of the interdisciplinary team, the role of communication and education, and to the effect of the care on patients and their families as well as on their own personal lives. They identify barriers at individual, team, organizational, hospital, community, and policy level. To address these barriers, they used strategies to support health professionals, patients and families, work and care organization strategies, strategies to improve relationships, communication, education, collaboration and intercultural care. Conclusions: Pediatric palliative care is considered both a reward and a challenge for health professionals but it is obvious that their poor and/or inadequate education and insufficient organization of work and care is in need of improvement in order to provide it effectively.
Identifier
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<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></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).
2022
Anastasopoulou E
April List 2023
Attitude Of Health Personnel
Collaboration
Communication
Communities
Dousis E
Education
Evaluation
Health Services Accessibility
Hospitals
Human
International Journal of Caring Sciences
Multidisciplinary Care Team
Multimethod Studies
Palliative Care
Pediatric Care
Professional-family Relations
Professional-patient Relations
PubMed
Reward
Systematic Review
Terminal Care
-
Dublin Core
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Title
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July 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
July List 2023
URL Address
<a href="http://doi.org/10.1093/mtp/miac003" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1093/mtp/miac003</a>
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Title
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Associations between Music Therapy, Pain and Heart Rate for Children Receiving Palliative Care
Publisher
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Music Therapy Perspectives
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Child; Child Preschool; Confidence Intervals; Convenience Sample; Descriptive Statistics; Female; Heart Rate; Human; In Infancy and Childhood; Infant; Infant Newborn; Male; Multimethod Studies; Music Therapy; Only Child; Pain; Palliative Care; Pediatric Care; Pretest-Posttest Design; Prevention and Control; Psychosocial Factors; Purposive Sample; Quality of Life; Scales; Summated Rating Scaling; Thematic Analysis; Therapy
Creator
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Delaney AM; Herbert AR; Bradford N; Bernard A
Description
An account of the resource
Abstract Music therapy (MT) is a widely used non-pharmacological intervention in pediatric health care, an integral part of pediatric palliative care (PPC). Yet, there is a lack of evidence of efficacy, and best practices are not well established. The nature and extent of physiologic impacts of MT in PPC have not previously been reported. This study explores how MT contributes to psycho-physiological changes in children receiving palliative care. We used a convergent mixed-methods feasibility study with a pre–post design. MT sessions were delivered to children (0–18 years), who were registered with a statewide Pediatric Palliative Care Service. Pre–post measures of pain and heart rate were collected using validated and objective measures and analyzed using mixed-model analysis. Analysis of 36 MT sessions demonstrated a statistically significant reduction in pain scores and heart rate after MT sessions. Post measures of pain measured with Face, Legs, Activity, Cry, Consolability scale (FLACC scale) scores were −1.57 (95% confidence interval [CI] −2.31 to −0.83) and by Likert pain scale −2.03 (95% CI −2.79 to −1.27). Heart rate reduced by a mean of −7.6 beats per minute (95% CI −10.74 to −3.37). Five parents participated in semi-structured interviews. Following thematic analysis, two major themes emerged: (1) MT has a positive impact on physiological symptoms and (2) MT enhances the opportunity to experience joy. Results demonstrate the feasibility of study components and may inform future research design for a larger study. This research contributes to the limited evidence about non-pharmacological interventions enhancing the quality of life for children receiving PPC.
Identifier
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<a href="http://doi.org/10.1093/mtp/miac003" target="_blank" rel="noreferrer noopener">10.1093/mtp/miac003</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
Bernard A
Bradford N
Child
Child Preschool
Confidence Intervals
Convenience Sample
Delaney AM
Descriptive Statistics
Female
Heart Rate
Herbert AR
Human
In Infancy and Childhood
Infant
Infant Newborn
July List 2023
Male
Multimethod Studies
Music Therapy
Music Therapy Perspectives
Only Child
Pain
Palliative Care
Pediatric Care
Pretest-Posttest Design
Prevention and Control
Psychosocial Factors
Purposive Sample
Quality Of Life
scales
Summated Rating Scaling
Thematic Analysis
Therapy
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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
Backlog
URL Address
<a href="http://www.cinahl.com/cgi-bin/refsvc?jid=979&accno=2009107523" target="_blank" rel="noreferrer">http://www.cinahl.com/cgi-bin/refsvc?jid=979&accno=2009107523</a>
Dublin Core
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Title
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Palliative care in Poland -- the Warsaw hospice for children
Publisher
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European Journal Of Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Patient Discharge; Patient Admission; Poland; Editorial Board Reviewed; Expert Peer Reviewed; Hospice palliative care; Nursing Journals; Online/Print; Palliative Care/ei [Ethical Issues]; Palliative Care/td [Trends]; Pediatric Care; Pediatric Care/td [Trends]; Peer Reviewed Journals; UK & Ireland Journals.
Creator
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Friedrichsdorf SJ; Brun S; Zernikow B; Dangel T
Description
An account of the resource
Stefan Friedrichsdorf, Sandra Brun, Boris Zernikow and Tomasz Dangel report on epidemiological data and describe Warsaw's paediatric hospice home care programme.
2006
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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).
Type
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Journal Article
2006
Backlog
Brun S
Child
Dangel T
Editorial Board Reviewed
European Journal Of Palliative Care
Expert Peer Reviewed
Friedrichsdorf SJ
Hospice palliative care
Journal Article
Nursing Journals
Online/Print
Palliative Care/ei [Ethical Issues]
Palliative Care/td [trends]
Patient Admission
Patient Discharge
Pediatric Care
Pediatric Care/td [Trends]
Peer Reviewed Journals
Poland
UK & Ireland Journals.
Zernikow B
-
Dublin Core
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1177/02692163221135350" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163221135350</a>
Dublin Core
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Title
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Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families' and professionals' experiences
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
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Collaboration; Child; Female; Male; Palliative Care; Denmark; Adolescence; Content Analysis; Qualitative Studies; Home Health Care; Data Analysis Software; Descriptive Research; Human; Descriptive Statistics; Pediatric Care; Semi-Structured Interview; In Infancy and Childhood; Cancer Patients; Case Studies; Oncologic Care
Creator
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Hammer NM; Hansson H; Pedersen LH; Abitz M; Sjøgren P; Schmiegelow K; Bidstrup PE; Larsen HB; Olsen M
Description
An account of the resource
Background: Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaboration between the family and professionals across health care sectors. Aim: To identify and explore key elements of home-based end-of-life care collaboration for children with cancer, as experienced by their parents and grandparents and the hospital- and community-based professionals involved. Design: Descriptive qualitative multiple-case study. Data were collected by semi-structured interviews and written responses to open-ended questions, and analyzed inductively across cases using qualitative content analysis. Setting/participants: Cases comprised a criterion sample of five children (aged <18 years), who died of cancer at home. Cases were represented by the children's bereaved parents (n = 8) and grandparents (n = 7), and community-based professionals (n = 16). Also, hospital-based professionals (n = 10) were interviewed about the children's end-of-life care through group interviews. Results: We identified five main themes, describing key elements of the end-of-life collaboration: Establishing the collaboration, Bolstering family life, Elucidating organization and integration, Managing challenges, and Closing the collaboration. These themes all came under the overarching theme: A mutual trust-based collaboration. On this basis, we developed the "Home-Based Pediatric End-of-Life Care Model for Children with Cancer." Conclusions: By highlighting key elements in the family-centered, intersectoral and interprofessional end-of-life care collaboration, our "Home-Based Pediatric End-of-Life Care Model for Children with Cancer" offers a framework for further optimization of home-based end-of-life care services for children with cancer and their families.
Identifier
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<a href="http://doi.org/10.1177/02692163221135350" target="_blank" rel="noreferrer noopener">10.1177/02692163221135350</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
2023 SE3 - Oncology
Abitz M
Adolescence
Bidstrup PE
cancer patients
Case Studies
Child
Collaboration
Content Analysis
Data Analysis Software
Denmark
Descriptive Research
Descriptive Statistics
Female
Hammer NM
Hansson H
Home Health Care
Human
In Infancy and Childhood
Larsen HB
Male
Olsen M
Oncologic Care
Palliative Care
Palliative Medicine
Pedersen LH
Pediatric Care
Qualitative Studies
Schmiegelow K
Semi-Structured Interview
Sjøgren P
-
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
2023 Special Edition 5 - Low Resource Setting List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.26719/emhj.22.038" target="_blank" rel="noreferrer noopener"> http://doi.org/10.26719/emhj.22.038</a>
Dublin Core
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Title
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Palliative care models and innovations in 4 Eastern Mediterranean Region countries: a case-based study
Publisher
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Eastern Mediterranean Health Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Palliative Care; Diffusion of Innovation; Quality Improvement; Case-Control Studies; Program Development; Program Implementation; Human; Pediatric Care; Community Service; Leaders; Mediterranean Region
Creator
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Krakauer E; Al-Shammary SA; Duraisamy B; Rassouli M; Rizkallah R; Fadhil S; Osman H
Description
An account of the resource
Background: There is a global agreement that palliative care should be universally accessible. However, in low- and middle- income countries and conflict zones, most people lack access to it. In the Eastern Mediterranean Region (EMR), no country has achieved integration of palliative care into its health care system, and only 4 countries have better-than-isolated palliative care provision. Aims: To promote and guide palliative care improvement in the EMR, with case studies showing the successes and challenges of palliative care implementation from 4 countries in the Region. Methods: We developed a structured, succinct, case-writing format and invited palliative care leaders in the EMR to use it to describe successes and challenges in palliative care implementation in their countries. Results: Within the EMR, in addition to many challenges and needs, there are examples of successful palliative care policy development, community-based service creation, and paediatric palliative care implementation. Conclusion: The experiences of the regional palliative care leaders documented in succinct, structured case studies, can help guide regional palliative care development in the EMR and other regions. Contexte : Il existe un accord mondial sur le fait que les soins palliatifs devraient être universellement accessibles. Cependant, dans les pays à revenu faible et intermédiaire et les zones de conflit, la plupart des personnes n' y ont pas accès. Dans la Région de la Méditerranée orientale, aucun pays n'est parvenu à intégrer les soins palliatifs dans son système de soins de santé, et seuls quatre pays disposent d'une offre de soins palliatifs qui sont en voie d'intégration. Objectifs : Promouvoir et guider l'amélioration des soins palliatifs dans la Région de la Méditerranée orientale, par le biais d'études de cas montrant les succès et les défis de la mise en oeuvre des soins palliatifs dans quatre pays de la Région. Méthodes : Nous avons mis au point un modèle de rédaction de cas structuré et succinct, et nous avons invité les responsables des soins palliatifs dans la Région de la Méditerranée orientale à s'en servir pour décrire les succès et les défis de la mise en oeuvre de ces soins dans leurs pays. Résultats : Dans la Région de la Méditerranée orientale, outre les nombreux défis et besoins, il existe des exemples de réussite concernant l'élaboration de politiques en matière de soins palliatifs, la mise en place de services communautaires et la mise en oeuvre des soins palliatifs pédiatriques. Conclusion : Les expériences réalisées par les responsables régionaux des soins palliatifs, qui sont documentées dans des études de cas structurées succintes, permettent de guider la mise en place des soins palliatifs au niveau régional.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.26719/emhj.22.038" target="_blank" rel="noreferrer noopener">10.26719/emhj.22.038</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).
2022
2023 SE5 - Low Resource Setting
Al-Shammary SA
Case-Control Studies
Community Service
Diffusion of Innovation
Duraisamy B
Eastern Mediterranean Health Journal
Fadhil S
Human
Krakauer E
Leaders
Mediterranean Region
Osman H
Palliative Care
Pediatric Care
Program Development
Program Implementation
Quality Improvement
Rassouli M
Rizkallah R
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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August 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
August 2019 List
URL Address
<a href="http://doi.org/10.1177/1049909118824560" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909118824560</a>
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Title
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The Photographs of Meaning Program for Pediatric Palliative Caregivers: Feasibility of a Novel Meaning-Making Intervention
Publisher
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American Journal of Hospice & Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Human; pediatric palliative care; New York; caregiver; Female; pediatric; Action Research; Adult; Caregiver Support; Caregivers -- Psychosocial Factors; Coefficient Alpha; Criterion-Related Validity; Data Analysis Software; Descriptive Statistics; Discriminant Validity; Health Facilities; Internal Consistency; Life Purpose; Married Women; meaning-centered psychotherapy; Middle Age; Mothers; Multimethod Studies; Narratives; Paired T-Tests; Palliative Care -- Psychosocial Factors; Pediatric Care; pediatric caregiver; Personal Satisfaction; Photography; photovoice; Pilot Studies; Pretest-Posttest Design; Program Development; Program Evaluation; Program Implementation; Psychotherapy -- Methods; Questionnaires; Reliability; Research Subject Recruitment; Semi-Structured Interview; social media; Social Media; Surveys; Whites; Adaptation; Psychological
Creator
An entity primarily responsible for making the resource
Levy K; Grant P C; Depner R M; Tenzek K E; Pailler M E; Beaupin L K; Breier J M; Byrwa D J
Description
An account of the resource
Background: Research indicates that informal caregiving can have intense physical and mental impact on the individual. Relative to caregivers of adults, pediatric palliative caregivers appear less in literature despite experiencing greater mental, physical, financial, and social strain. There is limited research on the creation and evaluation of interventions specifically for this population despite clear need. Objective: This study aims to evaluate the feasibility and engagement of the Photographs of Meaning Program, a modified meaning-making intervention for pediatric palliative caregivers. Design: Participants completed a pre�post intervention meaning-in-life measure. Over a 9-week period, participants followed a meaning-making curriculum whereby they created and shared photo narratives via social media. As part of the intervention, a community photo exhibition was held featuring these photo narratives. Exit interviews were also conducted at study close. Setting/Participants: Nine individuals providing informal care to children in a pediatric palliative care program participated in the intervention. All participants were female and are older than 18 years. Settings for research include participant homes and at The Center for Hospice and Palliative Care in Cheektowaga, New York. Results: Participants posted 95 photographs and 96 narratives during the intervention, posting on average once each week. Statistical analysis within the small sample indicated an increased presence of meaning in the lives of participants (P =.022). Exit interviews conveyed satisfaction with the intervention. Conclusions: Findings suggest that the Photographs of Meaning Program is a practical intervention with life-enhancing potential for pediatric palliative. Future research should aim to collect additional evidence of the intervention's effectiveness.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909118824560" target="_blank" rel="noreferrer noopener">10.1177/1049909118824560</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
Action Research
Adaptation
Adult
American Journal of Hospice & Palliative Medicine
August 2019 List
Beaupin L K
Breier J M
Byrwa D J
Caregiver
Caregiver Support
Caregivers -- Psychosocial Factors
Coefficient Alpha
Criterion-Related Validity
Data Analysis Software
Depner R M
Descriptive Statistics
Discriminant Validity
Female
Grant P C
Health Facilities
Human
Internal Consistency
Levy K
Life Purpose
Married Women
meaning-centered psychotherapy
Middle Age
Mothers
Multimethod Studies
Narratives
New York
Pailler M E
Paired T-Tests
Palliative Care -- Psychosocial Factors
Pediatric
Pediatric Care
pediatric caregiver
Pediatric Palliative Care
Personal Satisfaction
Photography
photovoice
Pilot Studies
Pretest-Posttest Design
Program Development
Program Evaluation
Program Implementation
Psychological
Psychotherapy -- Methods
Questionnaires
Reliability
Research Subject Recruitment
Semi-Structured Interview
social media
surveys
Tenzek K E
Whites
-
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 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
March 2019 List
URL Address
<a href="http://doi.org/10.1177/1049909118789868" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1177/1049909118789868</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
Children Enrolled in Hospice Care Under Commercial Insurance: A Comparison of Different Age Groups
Publisher
An entity responsible for making the resource available
American Journal of Hospice & Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Data Analysis Software; Age Factors; Male; Human; Sex Factors; Length of Stay; Child; Prospective Studies; Female; Child Preschool; Analysis of Variance; Infant; Adolescence; Health Care Costs; Insurance Health; Pediatric Care; Pennsylvania; Descriptive Statistics; Retrospective Design; Funding Source; Chi Square Test; Cross Sectional Studies; Health Resource Utilization; Academic Medical Centers -- Pennsylvania; Chronic Disease -- Classification -- In Infancy and Childhood; Comparative Studies; Geographic Factors; Hospice Care -- Economics -- In Infancy and Childhood; Hospice Patients -- Psychosocial Factors; Pearson's Correlation Coefficient
Creator
An entity primarily responsible for making the resource
Lindley Lisa C; Cohrs A C; Keim-Malpass J; Leslie D L
Identifier
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<a href="http://doi.org/10.1177/1049909118789868" target="_blank" rel="noreferrer noopener"> 10.1177/1049909118789868</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Description
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Background: Although most children at end of life have commercial insurance, little is known about their demographic and clinical characteristics, what care they are receiving, and how much it costs. Objectives: To describe commercially insured children who enrolled in hospice care during their last year of life and to examine differences across age-groups. Methods: A retrospective cohort study was conducted using 2005 to 2014 data from the MarketScan Commercial Claims and Encounters database from Truven Health Analytics. Variables were created for demographics, health, utilization, and spending. Analyses included χ2 and analysis of variance tests of differences. Results: Among the 17 062 children who utilized hospice, 49% had a preferred provider organization (PPO). Hospice length of stay averaged less than 5 days. Over 80% of children visited their primary care physician. Eight percent had hospital readmissions, and 38% had emergency department (ED) visits. Average expenditures were US$3686 per month or US$44 232 annually. The most common condition for children less than 1 year was cardiovascular (21.96%). Neuromuscular conditions were the most frequent (7.89%) in children aged 1 to 5 years, while malignancies (10.53% and 11.32%, respectively) were prevalent in ages 6 to 14 and 15 to 17. Children less than 1 year had the highest frequency of hospital readmissions (16.25%) with the lowest ED visits (28.67%) while incurring the highest expenses (US$11 211/month). Conclusions: The findings suggest that commercially insured children, who enroll in hospice, have flexible coverage with a PPO. Hospital readmissions and ED visits were relatively low for a population who was seriously ill. There were significant age-group differences.
2019
Academic Medical Centers -- Pennsylvania
Adolescence
Age Factors
American Journal of Hospice & Palliative Medicine
Analysis of Variance
Chi Square Test
Child
Child Preschool
Chronic Disease -- Classification -- In Infancy and Childhood
Cohrs A C
Comparative Studies
Cross Sectional Studies
Data Analysis Software
Descriptive Statistics
Female
Funding Source
Geographic Factors
Health Care Costs
Health Resource Utilization
Hospice Care -- Economics -- In Infancy and Childhood
Hospice Patients -- Psychosocial Factors
Human
Infant
Insurance Health
Keim-Malpass J
Length Of Stay
Leslie D L
Lindley Lisa C
Male
March 2019 List
Pearson's Correlation Coefficient
Pediatric Care
Pennsylvania
Prospective Studies
Retrospective Design
Sex Factors
-
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Title
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April 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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April List 2023
URL Address
<a href="http://doi.org/10.1080/07481187.2022.2072415" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/07481187.2022.2072415</a>
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Windmills and Pediatric Palliative Care
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Death Studies
Date
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2023
Subject
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Palliative Care; Pediatric Care
Creator
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McGill M; Okasha R
Description
An account of the resource
A Review of Pediatric Care: A Model for Exemplory Practice This book i sbased on research across three settings where children with complex, chronic, and potentially life-threatening conditions are often cared for: neonatal intensive care, oncology units and children`s hospice. [...]
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<a href="http://doi.org/10.1080/07481187.2022.2072415" target="_blank" rel="noreferrer noopener">10.1080/07481187.2022.2072415</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
April List 2023
Death studies
McGill M
Okasha R
Palliative Care
Pediatric Care
-
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.25259/IJPC_20_2021" target="_blank" rel="noreferrer noopener"> http://doi.org/10.25259/IJPC_20_2021</a>
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Setting-up a Supportive and Palliative Care Service for Children with Life-threatening Illnesses in Maharashtra -- Children's Palliative Care Project in India
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Indian Journal of Palliative Care
Date
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2022
Subject
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Collaboration; Child; Pain; Hospitals Pediatric; Critical Illness; Female; Male; Palliative Care; Quality of Life; Questionnaires; Needs Assessment; Data Collection; Cognition; Health Services Accessibility; Education; Community Health Services; Program Implementation; Child Advocacy; Human; India; Symptoms; Administration; International Agencies; Licensure; Pediatric Care; Only Child; In Infancy and Childhood; Academic Performance; Health and Welfare Planning; Health Facility Administrators; Personnel Health Facility; Psychosocial Functioning; Teamwork
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Muckaden MA; Ghoshal A; Talawadekar P; Marston JM; Paleri AK
Description
An account of the resource
Objectives: To describe the key initiatives that were successful in planning and implementing hospital- and community-based Paediatric Palliative Care (PPC) services designed for a resource-limited setting in Maharashtra, India, in collaboration with DfID. Materials and Methods: The CPC project was a 5-year service development project (April 2010--March 2015) conducted in Maharashtra, India, developed in collaboration with the Department for International Development (DFID), Hospice UK, International Children's Palliative Care Network (ICPCN), Indian Association of Palliative Care (IAPC) and Tata Memorial Centre, to advocate and care for the needs of children and families with life-limiting illnesses in a non-cancer setting. It was implemented through raising awareness and sensitising hospital administrators and staff about PPC, providing education and training on PPC, team building, and data collection to understand the need for PPC. Results: The total number of children enrolled in the CPC project was 866, 525 (60.6%) were male with a mean age of 9.3 years. Major symptom across sites was mild pain, and serial Quality of Life measurement (through PedsQL questionnaire) showed improvement in social, psychological and school performance. Advocacy with the Ministry of Health helped in procurement of NDPS licenses in district hospitals, and led to access to palliative care for children at policy level. Conclusion: The model of PPC service development can be replicated in other resource-limited settings to include children with life-limiting conditions. The development of pilot programmes can generate interest among local physicians to become trained in PPC and can be used to advocate for the palliative care needs of children.
Identifier
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<a href="http://doi.org/10.25259/IJPC_20_2021" target="_blank" rel="noreferrer noopener">10.25259/IJPC_20_2021</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).
2022
2023 SE5 - Low Resource Setting
Academic Performance
Administration
Child
Child Advocacy
Cognition
Collaboration
Community Health Services
Critical Illness
Data Collection
Education
Female
Ghoshal A
Health and Welfare Planning
Health Facility Administrators
Health Services Accessibility
Hospitals Pediatric
Human
In Infancy and Childhood
India
Indian Journal Of Palliative Care
International Agencies
Licensure
Male
Marston JM
Muckaden MA
Needs Assessment
Only Child
Pain
Paleri AK
Palliative Care
Pediatric Care
Personnel Health Facility
Program Implementation
Psychosocial Functioning
Quality Of Life
Questionnaires
Symptoms
Talawadekar P
Teamwork
-
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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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September 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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October 2018 List
URL Address
<a href="http://doi.org/10.1186/s12904-018-0361-x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-018-0361-x</a>
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Intranasal fentanyl for respiratory distress in children and adolescents
Publisher
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BMC Palliative Care
Date
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2018
Subject
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Palliative Care; Infant; Preschool; Adolescence; Child; Descriptive Statistics; Human; Administration; Record Review; Pediatric Care; Fentanyl Administration and Dosage; Fentanyl Adverse Effects; Fentanyl Therapeutic Use; Treatment Outcomes; Acute Drug Therapy; Intranasal; Respiratory Distress Syndrome
Creator
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Pieper L; Wager J; Zernikow B
Description
An account of the resource
Respiratory distress is one of the most common and frightening symptoms of children with life-limiting conditions. Because treatment of the underlying cause is frequently impossible or insufficient, in many children, symptomatic treatment is warranted. The purpose of this study was to describe the circumstances of the use of intranasal fentanyl in an acute attack of respiratory distress (AARD) in children receiving palliative care, as well as to describe outcomes and adverse events after its use. Methods Children and adolescents treated in a pediatric palliative unit or attended by a specialized home care team between 2010 and 2016 were included in this study. A retrospective chart review was conducted of those who were treated with intranasal fentanyl for an AARD. Results During the study period 16 children (0.5–18.6 years) with various life-limiting conditions were treated with intranasal fentanyl for AARD. In total, 70 AARDs were analyzed. In 74% of all AARDs, a single dose of intranasal fentanyl was used. Frequent causes for an AARD were excessive secretions and acute respiratory infection. The median starting dose of intranasal fentanyl was 1.5 μg/kg body weight. Labored breathing (96%), tachypnea (79%) and related suffering (97%) improved after treatment. An adverse event occurred in one child. Conclusions Intranasal fentanyl may be a safe and effective medication for the treatment of acute attacks of respiratory distress in children with life-limiting conditions. However, prospective studies with larger sample sizes and a control group are needed to validate these findings.
Identifier
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<a href="http://doi.org/10.1186/s12904-018-0361-x" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0361-x</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
2018
Acute Drug Therapy
Administration
Adolescence
BMC Palliative Care
Child
Descriptive Statistics
Fentanyl Administration and Dosage
Fentanyl Adverse Effects
Fentanyl Therapeutic Use
Human
Infant
Intranasal
October 2018 List
Palliative Care
Pediatric Care
Pieper L
Preschool
Record Review
Respiratory Distress Syndrome
September 2018 List
Treatment Outcomes
Wager J
Zernikow B
-
Dublin Core
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Title
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April 2018 List
Text
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April 2018 List
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<a href="http://doi.org/10.1089/jpm.2017.0201" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2017.0201</a>
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Self-Assessment of Skills and Competencies among Residents Participating in a Pediatric Hospice and Palliative Medicine Elective Rotation
Publisher
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Journal of Palliative Medicine
Date
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2018
Subject
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education; Academic Medical Centers; Education; Health Services Accessibility; Hospice Care; Hospices; Human; Internal Medicine; Palliative Care; Pediatric Care; Social Behavior; Terminally Ill Patients; Time Factors; Psychosocial Factors; human; Course Evaluation; Interns and Residents; Pediatricians; Professional Development; Rotation; Self Assessment; Social Skills; Surveys; Tertiary Health Care
Creator
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Rossfeld ZM; Tumin D; Humphrey L
Description
An account of the resource
OBJECTIVE: To describe our institutional experience with a four-week pediatric HPM elective rotation and its impact on residents' self-rated competencies. BACKGROUND: In the spirit of bolstering primary hospice and palliative medicine (HPM) skills of all pediatricians, it is unclear how best to teach pediatric HPM. An elective rotation during residency may serve this need. METHODS: An anonymous online survey was distributed to pediatric and internal medicine/pediatrics residents at a single, tertiary academic children's hospital. Respondents were asked to rate education, experience, and comfort with five aspects of communication with families of children with terminal illnesses and six domains of managing the symptoms of terminal illnesses. Self-ratings were recorded on a 1-5 scale: none, minimal, moderate, good, or excellent. Demographic data, including details of training and prior HPM training, were collected. Respondents completed a set of six questions gauging their attitude toward palliative care in general and at the study institution specifically. RESULTS: All respondents desire more HPM training. Those residents who self-selected to complete a pediatric HPM elective rotation had significantly higher self-ratings in 10 of 11 competency/skill domains. Free-text comments expressed concern about reliance on the specialty HPM team. DISCUSSION: A pediatric HPM elective can significantly increase residents' self-rated competency. Such rotations are an under-realized opportunity in developing the primary HPM skills of pediatricians, but wider adoption is restricted by the limited availability of pediatric HPM rotations and limited elective time during training.
Identifier
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<a href="http://doi.org/10.1089/jpm.2017.0201" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0201</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Academic Medical Centers
April 2018 List
Course Evaluation
Education
Health Services Accessibility
Hospice Care
Hospices
Human
Humphrey L
Internal Medicine
Interns and Residents
Journal of Palliative Medicine
Palliative Care
Pediatric Care
Pediatricians
Professional Development
Psychosocial Factors
Rossfeld ZM
Rotation
Self Assessment
Social Behavior
Social Skills
surveys
Terminally Ill Patients
tertiary health care
Time Factors
Tumin D
-
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Title
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August 2018 List
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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).
Text
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Citation List Month
August 2018 List
URL Address
<a href="http://doi.org/10.1542/peds.2017-3417" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2017-3417</a>
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Benefits of Early Referral to Pediatric Palliative Care for a Child With a Rare Disease
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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Palliative Care; Decision Making; Intensive Care Units; Referral and Consultation; Mutation; Child; Male; Pain Management; Intellectual Disability; Health Education; Parental Attitudes; Pediatric; Pediatric Care; Connective Tissue Diseases Diagnosis; Connective Tissue Diseases Familial and Genetic In Infancy and Childhood; Connective Tissue Diseases Symptoms; Connective Tissue Diseases Therapy In Infancy and Childhood; Dyspnea Drug Therapy; Face Pathology; Family Education; Fibrosis; Morphine Therapeutic Use; Clinical; Muscle; Skeletal Abnormalities
Creator
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Vadeboncoeur C; McHardy M
Description
An account of the resource
The article outlines the benefits of palliative care supporting the child and family with attention to individualized symptom management, improved communication, and support making difficult decisions. Topics mentioned include the research program Care4Rare at the Children's Hospital of Eastern Ontario, the importance of finding a name or a genetic difference or a cause for future family planning, and the role of morphine for symptom management.
Identifier
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<a href="http://doi.org/10.1542/peds.2017-3417" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-3417</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
August 2018 List
Child
Clinical
Connective Tissue Diseases Diagnosis
Connective Tissue Diseases Familial and Genetic In Infancy and Childhood
Connective Tissue Diseases Symptoms
Connective Tissue Diseases Therapy In Infancy and Childhood
Decision Making
Dyspnea Drug Therapy
Face Pathology
Family Education
Fibrosis
Health Education
Intellectual Disability
Intensive Care Units
Male
McHardy M
Morphine Therapeutic Use
Muscle
Mutation
Pain Management
Palliative Care
Parental Attitudes
Pediatric
Pediatric Care
Pediatrics
Referral And Consultation
Skeletal Abnormalities
Vadeboncoeur C
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Title
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November 2023 List
Text
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Citation List Month
November List 2023
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<a href="http://doi.org/10.3390/children10081315" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10081315</a>
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Telehealth Needs and Concerns of Stakeholders in Pediatric Palliative Home Care
Publisher
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Children
Date
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2023
Subject
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Health Services Needs and Demand; Female; Male; Palliative Care; Quality of Health Care; Adult; Telemedicine; Middle Age; Qualitative Studies; Home Health Care; Data Analysis Software; Human; Descriptive Statistics; Pediatric Care; Family Attitudes; Funding Source; Semi-Structured Interview; Patient Attitudes; Quantitative Studies; Pilot Studies; Telehealth
Creator
An entity primarily responsible for making the resource
Zimmermann J; Heilmann ML; Fisch-Jessen M; Hauch H; Kruempelmann S; Moeller H; Nagel L; Nathrath M; Vaillant V; Voelker T; Deckers MJ
Description
An account of the resource
Abstract Pediatric palliative home care (PPHC) provides care for children, adolescents, and young adults with life-limiting illnesses in their own homes. Home care often requires long travel times for the PPHC team, which is available to the families 24/7 during crises. The complementary use of telehealth may improve the quality of care. In this pilot study we identify the needs and concerns of patients, teams, and other stakeholders regarding the introduction of telehealth. As a first step, focus groups were conducted in three teams. For the second step, semi-structured interviews were conducted with patients and their families (n = 15). Both steps were accompanied by quantitative surveys (mixed methods approach). The qualitative data were analyzed using content analysis. A total of 11 needs were identified, which were prioritized differently. Highest priority was given to: data transmission, video consultation, access to patient records, symptom questionnaires, and communication support. The concerns identified were related to the assumption of deterioration of the status quo. Potential causes of deterioration were thought to be the negative impact on patient care, inappropriate user behavior, or a high level of technical requirements. As a conclusion, we define six recommendations for telehealth in PPHC.
Identifier
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<a href="http://doi.org/10.3390/children10081315" target="_blank" rel="noreferrer noopener">10.3390/children10081315</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
Adult
Children
Data Analysis Software
Deckers MJ
Descriptive Statistics
Family Attitudes
Female
Fisch-Jessen M
Funding Source
Hauch H
Health Services Needs And Demand
Heilmann ML
Home Health Care
Human
Kruempelmann S
Male
Middle Age
Moeller H
Nagel L
Nathrath M
November List 2023
Palliative Care
Patient Attitudes
Pediatric Care
Pilot Studies
Qualitative Studies
Quality Of Health Care
Quantitative Studies
Semi-Structured Interview
Telehealth
Telemedicine
Vaillant V
Voelker T
Zimmermann J