1
40
6
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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/S1478951523000147" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S1478951523000147</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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Evaluating a novel hospital-based online health community to address palliative and psychosocial care factors for chronically ill adolescent and young adult patients
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
chronic patient; palliative therapy; psychosocial care; Adolescent; adult; article; Chronic Disease; clinical article; controlled study; data analysis; expectation; female; human; interview; male; personal experience; phenomenology; qualitative analysis; questionnaire; solidarity; young adult
Creator
An entity primarily responsible for making the resource
LeBeau K; Collins S; Zori G; Walker D; Marchi E; Pomeranz JL; Hart M
Description
An account of the resource
OBJECTIVES: Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial care. AYAs who receive palliative and psychosocial care experience numerous benefits from these services. However, we still lack research investigating age-appropriate programs targeting AYAs' psychosocial needs that are delivered virtually and extend beyond the hospital setting. Streetlight is a palliative care program designed for chronically ill AYAs that offers the Streetlight Gaming League (SGL), an online health community (OHC) combining peer-based support, online gaming, and community events. We evaluated the usefulness, acceptability, and potential effectiveness of SGL through an assessment of chronically ill AYAs' lived experiences. <br/>METHOD(S): We used a qualitative evaluation approach grounded in hermeneutic phenomenology. Questionnaires and interviews were conducted with 9 chronically ill AYAs to elicit in-depth accounts of their lived experiences of using SGL. Descriptive statistical analysis was performed on questionnaire data. Phenomenological data analysis, informed by hermeneutic analysis, was used to analyze interviews. <br/>RESULT(S): AYAs reported positive experiences with SGL and valued the ability to engage in various content while having few participation expectations. They also described psychosocial benefits, including reprieve from illness, sense of community, and solidarity through mutual understandings and shared experiences. SIGNIFICANCE OF THE RESULTS: Findings highlight the usefulness and acceptability of a virtual palliative psychosocial care program for chronically ill AYAs. Findings also suggest the effectiveness of SGL and support using an OHC to meet the psychosocial needs of AYAs. This study can guide future programming and implementation of online palliative psychosocial care programs in other hospital settings, resulting in similar beneficial and meaningful experiences.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/S1478951523000147" target="_blank" rel="noreferrer noopener">10.1017/S1478951523000147</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
Adolescent
Adult
Article
Chronic Disease
Chronic Patient
Clinical Article
Collins S
Controlled Study
Data Analysis
Expectation
Female
Hart M
Human
Interview
Lebeau K
Male
Marchi E
May List 2023
Palliative And Supportive Care
Palliative Therapy
Personal Experience
Phenomenology
Pomeranz JL
psychosocial care
Qualitative Analysis
Questionnaire
solidarity
Walker D
Young Adult
Zori 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
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.2018.10.042" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.042</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
Exploring Resident Physicians' Experiences Practicing in Pediatric Palliative Care: A Hermeneutic Method of Inquiry
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
death; grief; semi structured interview; pediatrics; palliative therapy; student; personal experience; resident; medical education; data analysis; genetic transcription; conference abstract; human; child; controlled study; perception; guilt; qualitative research; phenomenology; chronic patient; rotation
Creator
An entity primarily responsible for making the resource
Johnson A; Siden H; Charles G
Description
An account of the resource
Objectives: The experiences of medical residents during training in pediatric palliative care has recently become an area of focus within medical education literature. Residents' medical knowledge, skill development, and comfort in clinical practice in palliative care have all been investigated within recent studies. However, the current body of literature in this area is limited and under-developed as it has neglected the human experience of caring for children with life-limiting diseases. The primary objective of this study is to widen the understanding of pediatric residents who have completed training in pediatric palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.042" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.042</a>
2018
Charles G
Child
Chronic Patient
conference abstract
Controlled Study
Data Analysis
Death
February 2019 List
genetic transcription
Grief
Guilt
Human
Johnson A
Journal of Pain and Symptom Management
Medical Education
Palliative Therapy
Pediatrics
Perception
Personal Experience
Phenomenology
Qualitative Research
Resident
Rotation
Semi Structured Interview
Siden H
Student
-
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 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
April List 2024
URL Address
<a href="http://doi.org/10.1089/jpm.2023.0322" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0322</a>
Dublin Core
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Title
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How Do Children With Medical Complexity Die? A Scoping Review
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
2024
Subject
The topic of the resource
Child; child; cohort analysis; human; chronic disease; quality of life; North America; systematic review; review; health care utilization; personal experience; Only Child; clinical practice; child death; qualitative research; knowledge gap; place of death; chronic patient; biological marker
Creator
An entity primarily responsible for making the resource
Chan Ng GM; Bourassa MH; Patel H
Description
An account of the resource
Introduction: Advancement in medical expertise and technology has led to a growing cohort of children with medical complexity (CMC), who make up a rising proportion of childhood deaths. However, end of life in CMC is poorly understood and little is known about illness trajectories, communication, and decision-making experiences. Objective: To synthesize existing literature and characterize the end-of-life experience in CMC. Methods: A literature search of MEDLINE, CINAHL, PsycINFO, Scopus, Embase, and Google Scholar was conducted up to August 26, 2021. Studies reporting CMC at end of life were included and the extracted data were analyzed descriptively. Findings: Of 1535 publications identified, 23 studies were included. Most studies (15/23 [65%]) were published from 2015 to 2021 and were quantitative in nature (20/23 [87%]). The majority of studies that extracted data from a single country (18/20 [90%]) originated from North America. Study outcomes were categorized into four main domains: (1) place of death (2) health care use (3) interventions received or withdrawn (4) communication, and end-of-life experiences. The weighted percentage of in-hospital CMC deaths was 80.6%. Studies reported that CMC had increased health care use and were subjected to more intensive interventions at end of life compared with non-CMC. Qualitative studies highlighted the following themes: Intrinsic prognostic uncertainty, differing perspectives of the child's quality of life, the chronic illness experience, a desire to have parental expertise acknowledged, surprise at the terminal event, the experience of multiple losses, with an overarching theme of the need for compassionate care at end of life. Conclusions: This scoping review highlighted important characteristics of end of life in CMC, outlining the emerging evidence and knowledge gaps on this topic. A better understanding of this cohort of seriously and chronically ill children would serve to inform clinical practice, service development, and future research.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2023.0322" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0322</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).
2024
April List 2024
biological marker
Bourassa MH
Chan Ng GM
Child
Child Death
Chronic Disease
Chronic Patient
Clinical Practice
Cohort Analysis
Health Care Utilization
Human
Journal of Palliative Medicine
knowledge gap
North America
Only Child
Patel H
Personal Experience
Place Of Death
Qualitative Research
Quality Of Life
Review
Systematic Review
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
August 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.1111/hsc.13870" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/hsc.13870</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
I feel like my house was taken away from me': Parents' experiences of having home adaptations for their medically complex, technology-dependent child
Publisher
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Health and social care in the community
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
child; England; female; male; adult; human; Scotland; home care; Wales; patient care; article; controlled study; interview; preschool child; human experiment; wellbeing; conceptual framework; adolescent; thinking; decision making; father; mother; thematic analysis; heat; disabled person; chronic patient; biotechnology; regeneration
Creator
An entity primarily responsible for making the resource
Mitchell TK; Bray L; Blake L; Dickinson A; Carter B
Description
An account of the resource
Technology-dependent children are a sub-population of seriously ill children with life-limiting conditions who are being cared for at home by their families. Although home-based care has been the model of care for these children since the late 1980s, there is a paucity of literature about parents' experiences of having home adaptations made to enable their home to be a place of care for their child. Using the findings from auto-driven photo-elicitation interviews conducted between August 2017 and June 2018 with 12 parents (10 mothers and 2 fathers) who have a technology-dependent child (aged 5-25years) living in England, Scotland and Wales and David Seamon's five concepts of at-homeness (appropriation, at-easeness, regeneration, rootedness and warmth) as a conceptual framework, this paper addresses how parents' experienced home adaptations. Thematic analysis generated a meta-theme of 'Home needs to be a home for all family members' and the three key themes: (1) 'You just get told' and 'you're not involved'; (2) It's just the 'cheapest', 'quickest', 'short-term' approach; (3) Having 'control' and 'thinking things through.' The need to involve parents in decision-making about adaptations that are made to their home (family-informed design) is clear, not only from a cost-saving perspective for the state, but for creating an aesthetic and functional home that optimises health, well-being and feelings of at-homeness for the entire family. Copyright © 2022 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.
Identifier
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<a href="http://doi.org/10.1111/hsc.13870" target="_blank" rel="noreferrer noopener">10.1111/hsc.13870</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
Adolescent
Adult
Article
August 2022 List
biotechnology
Blake L
Bray L
Carter B
Child
Chronic Patient
Conceptual Framework
Controlled Study
Decision Making
Dickinson A
disabled person
England
Father
Female
Health And Social Care In The Community
Heat
Home Care
Human
Human Experiment
Interview
Male
Mitchell TK
Mother
Patient Care
Preschool Child
regeneration
Scotland
Thematic Analysis
thinking
Wales
Wellbeing
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2017 List
URL Address
<a href="http://doi.org/10.1016/j.jped.2017.07.014" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jped.2017.07.014</a>
Notes
<p>Using Smart Source Parsing<br />Date of Publication: 2017</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
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Pediatric chronic patients at outpatient clinics: A study in a Latin American University Hospital
Publisher
An entity responsible for making the resource available
Jornal De Pediatria.
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Chronic Patient; Emergency Ward; Hospital Admission; Hospitalization; Outpatient; University Hospital; Adolescent; Adult; Cardiology; Child; Controlled Study; Cross Sectional Study; Death; Emergency Health Service; Endocrinology; Female; Hematology; Human; Intensive Care Unit; Kidney Transplantation; Major Clinical Study; Male; Nephrology; Neurology; Oncology; Pain; Physician; Psychiatry; Rheumatology
Creator
An entity primarily responsible for making the resource
Alveno RA; Miranda CV; Passone CG; Waetge AR; Hojo ES; Farhat SCL; Odone-Filho V; Tannuri U; Carvalho WB; Carneiro-Sampaio M; Silva CA
Description
An account of the resource
Objective: To describe the characteristics of children and adolescentes with chronic diseases of outpatient clinics at a tertiary university hospital. Methods: A cross-sectional study was performed with 16,237 patients with chronic diseases followed-up in one year. The data were collected through the electronic system, according to the number of physician appointments in 23 pediatric specialties. Patients were divided in two groups: children (0-9 years) and adolescents (10-19 years). Early (10-14 years) and late (15-19 years) adolescent groups were also analyzed. Results: Of the total sample, 56% were children and 46% were adolescents. The frequencies of following pediatric specialties were significantly higher in adolescents when compared with children: cardiology, endocrinology, hematology, nephrology/renal transplantation, neurology, nutrology, oncology, palliative and pain care, psychiatry, and rheumatology (p <. 0.05). The frequencies of emergency service visits (30% vs. 17%, p <. 0.001), hospitalizations (23% vs. 11%, p <. 0.001), intensive care unit admissions (6% vs. 2%, p <. 0.001), and deaths (1% vs. 0.6%, p = 0.002) were significantly lower in adolescents than in children. However, the number of physician appointments (>=13) per patient was also higher in the adolescent group (5% vs. 6%, p = 0.018). Further analysis comparison between early and late adolescents revealed that the first group had significantly more physician appointments (35% vs. 32%, p = 0.025), and required more than two pediatric specialties (22% vs. 21%, p = 0.047). Likewise, the frequencies of emergency service visits (19% vs. 14%, p <. 0.001) and hospitalizations (12% vs. 10%, p = 0.035) were higher in early adolescents. Conclusions: This study evaluated a large population in a Latin American hospital and suggested that early adolescents with chronic diseases required many appointments, multiple specialties and hospital admissions.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jped.2017.07.014" target="_blank" rel="noreferrer">10.1016/j.jped.2017.07.014</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Adolescent
Adult
Alveno RA
Cardiology
Carneiro-Sampaio M
Carvalho WB
Child
Chronic Patient
Controlled Study
Cross Sectional Study
Death
December 2017 List
Emergency Health Service
Emergency Ward
Endocrinology
Farhat SCL
Female
Hematology
Hojo ES
Hospital Admission
Hospitalization
Human
Intensive Care Unit
Jornal De Pediatria.
Kidney Transplantation
Major Clinical Study
Male
Miranda CV
Nephrology
Neurology
Odone-Filho V
Oncology
Outpatient
Pain
Passone CG
Physician
Psychiatry
Rheumatology
Silva CA
Tannuri U
University Hospital
Waetge AR
-
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
2018 Developing World List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Developing World 2018 List
URL Address
<a href="http://doi.org/10.1097/01.ccm.0000528499.57151.25" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1097/01.ccm.0000528499.57151.25</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
Pediatric intensivist end-of-life practices and attitudes in Vietnam
Publisher
An entity responsible for making the resource available
Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
qualitative analysis; semi structured interview; terminal care; chronic disease; education; major clinical study; life sustaining treatment; cultural factor; medical technology; quantitative analysis; human; child; female; male; perception; palliative therapy; resuscitation; doctor nurse relation; Viet Nam; chronic patient; pediatric hospital; tertiary health care; Vietnamese; intensivist
Creator
An entity primarily responsible for making the resource
Schiltz B; Liu J; Fadadu P; Kumbamu A; Phan P; Tran X; Ouellette Y
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.ccm.0000528499.57151.25" target="_blank" rel="noreferrer noopener">10.1097/01.ccm.0000528499.57151.25</a>
2018
Child
Chronic Disease
Chronic Patient
Critical Care Medicine
Cultural Factor
Developing World 2018 List
doctor nurse relation
Education
Fadadu P
Female
Human
Intensivist
Kumbamu A
Life Sustaining Treatment
Liu J
Major Clinical Study
Male
Medical Technology
Ouellette Y
Palliative Therapy
Pediatric Hospital
Perception
Phan P
Qualitative Analysis
quantitative analysis
Resuscitation
Schiltz B
Semi Structured Interview
Terminal Care
tertiary health care
Tran X
Viet Nam
Vietnamese