1
40
18
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Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
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A collection of relevant articles published by one or more of PedPalASCNet's members
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
URL Address
<a href="http://journals.sagepub.com/doi/10.1177/1049732316664712" target="_blank" rel="noreferrer noopener">http://journals.sagepub.com/doi/10.1177/1049732316664712</a>
Notes
Hard-copy issue published: February 1, 2017; Article first published online: August 23, 2016
Cite as:
Davies, B., Steele, R., Krueger, G., Albersheim, S., Baird, J., Bifirie, M., Cadell, S., Doane, S., Garga, D., Siden, H., Strahlendorf, C., & Zhou, Y. (February, 2017). Best practices in provider/parent interaction. Qualitative Health Research, 27(3), 406-420. doi:10.1177/1049732316664712
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
Best Practice In Provider/Parent Interaction
Publisher
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Qualitative Health Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Pediatrics; Quality; Parents Experiences; Communication; Hospital Staff; Pediatric Palliative Care; Grounded Theory; Social Sciences; Biomedical; Family Perspectives; Qualitative Analysis; Empathy; Medicine; Practice Guidelines; Childs Death; Canada; Social Sciences; Interdisciplinary; Patient-provider; Reflection; Information Science & Library Science; Palliative Care; Relationships; Best Practice
Creator
An entity primarily responsible for making the resource
Davies B; Steele R; Krueger G; Albersheim S; Baird J; Bifirie M; Cadell S; Doane G; Garga D; Siden H; Strahlendorf C; Zhao Y
Description
An account of the resource
In this 3-year prospective grounded theory study in three pediatric settings, we aimed to develop a conceptualization of best practice health care providers (BPHCPs) in interaction with parents of children with complex, chronic, life-threatening conditions. Analysis of semistructured interviews with 34 parents and 80 health care professionals (HCPs) and 88 observation periods of HCP/parent interactions indicated that BPHCPs shared a broad worldview; values of equity, family-centered care, and integrity; and a commitment to authentic engagement. BPHCPs engaged in direct care activities, in connecting behaviors, and in exquisitely attuning to particularities of the situation in the moment, resulting in positive outcomes for parents and HCPs. By focusing on what HCPs do well, findings showed that not only is it possible for HCPs to practice in this way, but those who do so are also recognized as being the best at what they do. We provide recommendations for practice and initial and ongoing professional education.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1177/1049732316664712" target="_blank" rel="noreferrer noopener">10.1177/1049732316664712</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).
2016
Albersheim S
August 2016 List
Baird J
Best Practice
Best Practices in Provider/Parent Interactions in Pediatrics
Bifirie M
Biomedical
Cadell S
Canada
Childs Death
Communication
Davies B
Doane G
Empathy
Family Perspectives
Garga D
Grounded Theory
Hospital Staff
Information Science & Library Science
Interdisciplinary
Krueger G
Medicine
Palliative Care
Parents Experiences
Patient-provider
Pediatric Palliative Care
Pediatrics
Practice Guidelines
Qualitative Analysis
Qualitative Health Research
Quality
Reflection
Relationships
Siden H
Social Sciences
Steele R
Strahlendorf C
Zhao Y
-
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/10.1111/jan.13811" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1111/jan.13811</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
Conflicting realities experienced by children with life-limiting and life-threatening conditions when transitioning to adult health services
Publisher
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Journal of advanced nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
social support; qualitative analysis; palliative therapy; major clinical study; sibling; non profit organization; skill; joint; human; article; child; female; male; controlled study; adult; interview; total quality management; transition to adult care; learning; social media; adult child; secondary analysis; dilution; facilitation; social isolation
Creator
An entity primarily responsible for making the resource
Noyes J; Pritchard S; Pritchard A; Bennett V; Rees S
Description
An account of the resource
AIMS: The aim of this study was to report a secondary qualitative analysis exploring the cultural and practical differences that young people and parents experience when transitioning from children's to adult services. BACKGROUND: Despite two decades of research and quality improvement initiatives, young people with life-limiting and life-threatening conditions still find transition unsatisfactory. DESIGN: Secondary analysis: 77 qualitative interviews with children and young people (20), parents (35), siblings (1), professionals (21).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/jan.13811" target="_blank" rel="noreferrer noopener">10.1111/jan.13811</a>
2018
Adult
Adult Child
Article
Bennett V
Child
Controlled Study
dilution
facilitation
February 2019 List
Female
Human
Interview
joint
Journal Of Advanced Nursing
Learning
Major Clinical Study
Male
Non Profit Organization
Noyes J
Palliative Therapy
Pritchard A
Pritchard S
Qualitative Analysis
Rees S
Secondary Analysis
Sibling
Skill
Social Isolation
social media
Social Support
Total Quality Management
Transition To Adult Care
-
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://doi.org/10.1046/j.1526-4637.2001.01041.x" target="_blank" rel="noreferrer">http://doi.org/10.1046/j.1526-4637.2001.01041.x</a>
Dublin Core
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Title
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Designing pain research from the patient's perspective: What trial end points are important to patients with chronic pain?
Publisher
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Pain Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Female; Male; Adult; Aged; Perception; Demography; Human; Sleep; Interview; Evaluation; Chronic Pain/dt [Drug Therapy]; Outcomes Research; Article; Clinical Article; Clinical Study; Controlled Study; Disease Severity; Dose Response; Empiricism; Health Center; Medical Decision Making; Medical Information; Medical Research; Methodology; Opiate/do [Drug Dose]; Opiate/dt [Drug Therapy]; Pain Assessment; Pain Clinic; qualitative analysis; Rating Scale; Urban Area
Creator
An entity primarily responsible for making the resource
Casarett D; Karlawish J; Sankar P; Hirschman K; Asch DA
Description
An account of the resource
Objectives. The goals of this study were to define the endpoints of pain research that are important to patients with chronic pain and to identify clinical and demographic variables that are associated with patients' choices of endpoints. Patients & Setting. Interviews were completed with 40 patients seen at the anesthesia pain clinic of an urban tertiary care medical center. Design. Each patient was presented with 4 brief (3-4 sentences) fixed information vignettes describing studies in which new medications would be evaluated. For each, patients were asked to describe how the medication being studied might offer an improvement over their current therapy. Outcome measures. Measures included structured qualitative analysis of responses, the Brief Pain Inventory, and Global Distress Index of the Memorial Symptom Assessment Scale. Results. Patients described a total of 20 endpoints. Individually, patients cited between 2 and 9 end-points each (mean 4.9, standard deviation 1.7). Of these, the most commonly cited were decrease pain, decrease opioid dose, decrease frequency of scheduled dose, increased ability to function, decrease frequency of breakthrough dose, and improve sleep. Patients with severe pain cited more endpoints than did those with mild or moderate pain (mean 5.5 vs. 4.3; Rank sum test p = 0.01). Conclusions. These data suggest that empirical research can provide data to guide the choice of endpoints in clinical studies of pain interventions.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1046/j.1526-4637.2001.01041.x" target="_blank" rel="noreferrer">10.1046/j.1526-4637.2001.01041.x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2001
Adult
Aged
Article
Asch DA
Backlog
Casarett D
Chronic Pain/dt [Drug Therapy]
Clinical Article
Clinical Study
Controlled Study
Demography
Disease Severity
Dose Response
Empiricism
Evaluation
Female
Health Center
Hirschman K
Human
Interview
Journal Article
Karlawish J
Male
Medical Decision Making
Medical Information
Medical Research
Methodology
Opiate/do [Drug Dose]
Opiate/dt [drug Therapy]
Outcomes Research
Pain Assessment
Pain Clinic
Pain Medicine
Perception
Qualitative Analysis
Rating Scale
Sankar P
Sleep
Urban Area
-
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 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
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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
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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/10.1002/ppul.24073" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ppul.24073</a>
Dublin Core
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Title
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Exploring knowledge and perceptions of palliative care to inform integration of palliative care education into cystic fibrosis care
Publisher
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Pediatric Pulmonology
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adolescent; adult; article; female; human; male; palliative therapy; clinical article; palliative care; health care personnel; priority journal; caregiver; parent; perception; communication; semi structured interview; adolescence; attitude to health; cystic fibrosis; health education; lung fibrosis; patient education; qualitative analysis
Creator
An entity primarily responsible for making the resource
Dellon E P; Helms S W; Hailey C E; Shay R; Carney S D; Schmidt H J; Brown D E; Prieur M G
Description
An account of the resource
Background: Individuals with cystic fibrosis (CF) face the challenges of managing a chronic, progressive disease. While palliative care is a standard of care in serious illnesses, there are no guidelines for its incorporation into CF care. Patients with CF, caregivers, and CF care providers may lack knowledge about palliative care and perceive barriers to integrated care. Objective(s): To: 1) explore knowledge and perceptions of palliative care among patients with CF, caregivers, and CF care providers; 2) solicit opinions about incorporating palliative care into routine CF care; and 3) solicit recommendations for CF-specific palliative care education for patients and caregivers. Method(s): We conducted semi-structured interviews with adult patients with CF, parents of adolescents with CF, and CF care providers to assess knowledge and perceptions of palliative care. Discussion included suggestions for palliative care education and integration into CF care. The sample was characterized using summary statistics. Key themes were identified using qualitative content analysis. Result(s): Ten patients with CF, ten parents, and eight CF care providers participated. Many had minimal knowledge of palliative care and endorsed the association with end of life as a barrier to palliative care, but after learning more about palliative care, thought it could be helpful, and should be introduced earlier. Conclusion(s): In this single center study, many patients with CF, caregivers, and providers lacked knowledge about palliative care. These findings warrant replication in a larger, multisite study to inform palliative care educational interventions as a step toward consistent integration of palliative care into routine CF care. Copyright � 2018 Wiley Periodicals, Inc.
Identifier
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<a href="http://doi.org/10.1002/ppul.24073" target="_blank" rel="noreferrer noopener">10.1002/ppul.24073</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
Adolescence
Adolescent
Adult
Article
Attitude To Health
August 2019 List
Brown D E
Caregiver
Carney S D
Clinical Article
Communication
Cystic Fibrosis
Dellon E P
Female
Hailey C E
Health Care Personnel
Health Education
Helms S W
Human
lung fibrosis
Male
Palliative Care
Palliative Therapy
Parent
Patient Education
Pediatric Pulmonology
Perception
Prieur M G
Priority Journal
Qualitative Analysis
Schmidt H J
Semi Structured Interview
Shay 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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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/10.3390/children9030445" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9030445</a>
Dublin Core
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Title
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Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases
Publisher
An entity responsible for making the resource available
Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
advance care planning; attitude to illness; caregiver; family centered care; parent; parental attitude; pediatric patient; psychosocial care; rare disease; adult; Advance Care Planning; article; body movement; child care; cohort analysis; collaborative care team; content analysis; conversation; disease burden; family decision making; feasibility study; female; human; human relation; palliative therapy; qualitative analysis; social connectedness; videorecording
Creator
An entity primarily responsible for making the resource
Fratantoni K; Livingston J; Schellinger SE; Aoun SM; Lyon ME
Description
An account of the resource
Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent's understanding of their child's illness, goals of care, and what mattered most to their child from the parent's perspective. Six families completed a feasibility study of the FAmily CEntered (FACE)-Rare pACP intervention. Qualitative content analysis was performed on transcripts of videotaped responses to the Respecting Choices Next Steps pACP Conversation facilitated conversation guide about the goals of care. Codes were grouped into themes, with direct participant quotations representing the themes. Five themes emerged: getting out and moving freely; feeling included and engaged; managing symptoms and disease burden; coordinating care among many care team members; and managing today and planning for the future. In the context of pACP, families reported that what mattered most to their children included the freedom of movement and human connection and engagement, while parents strived to be effective caregivers and advocates for their child with a rare and severely disabling disease.Copyright © 2022 by the authors. Licensee MDPI, Basel, Switzerland.
Identifier
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<a href="http://doi.org/10.3390/children9030445" target="_blank" rel="noreferrer noopener">10.3390/children9030445</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
Adult
Advance Care Planning
Aoun SM
Article
attitude to illness
body movement
Caregiver
Child Care
Children
Cohort Analysis
collaborative care team
Content Analysis
Conversation
Disease Burden
Family Centered Care
Family Decision Making
Feasibility Study
Female
Fratantoni K
Human
Human Relation
July List 2023
Livingston J
Lyon ME
Palliative Therapy
Parent
Parental Attitude
pediatric patient
psychosocial care
Qualitative Analysis
Rare Disease
Schellinger SE
social connectedness
videorecording
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 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/10.1177/00912174241229926" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/00912174241229926</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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Flourishing, religion, and burnout among caregivers working in pediatric palliative care
Publisher
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International Journal of Psychiatry in 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; Palliative Care; article; controlled study; female; human; male; palliative therapy; coping; dying; South Africa; qualitative analysis; caregiver; cross-sectional study; prevalence; adolescent; multidisciplinary team; convenience sample; job satisfaction; religion; work environment; life satisfaction; terminally ill patient; burnout; job stress
Creator
An entity primarily responsible for making the resource
Oberholzer AE; Doolittle BR
Description
An account of the resource
Introduction: Providers working with children who are dying are especially prone to burnout. Encouraging models of human flourishing may mitigate burnout and improve quality of care. However, models of job satisfaction and human flourishing have not been well-described. This project explores factors that promote human flourishing among caregivers working with children in pediatric palliative care in South Africa. Methods: A convenience sample of caregivers working in pediatric palliative care were invited to complete an anonymous, confidential survey comprised of validated instruments. The survey also included open-ended questions to explore opinions and attitudes about satisfaction, struggles, and coping. Results: Twenty-nine people from a variety of occupations and work environments completed the survey. The prevalence of burnout was 3/29 (10%). Life satisfaction was associated with private religious activities (P = .38, P < .05), and carrying religion into all aspects of life (P = .44, P < .05). Burnout was not associated with life satisfaction. Qualitative analysis of the open-ended questions revealed the following themes as factors contributing to their joy in work: being able to make a difference, finding meaning and purpose, having a relationship with the children and their families, and with the multi-disciplinary team. The greatest challenges in their work were identified as the lack of resources, challenges within their team, and emotional demands. Conclusions: Despite job stress and working with terminally ill children, several factors were associated with flourishing. These findings are particularly relevant to enhance caregiving in the resource-challenged setting of pediatric palliative care in South Africa.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/00912174241229926" target="_blank" rel="noreferrer noopener">10.1177/00912174241229926</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
Adolescent
April List 2024
Article
Burnout
Caregiver
Child
Controlled Study
Convenience Sample
Coping
Cross-sectional Study
Doolittle BR
Dying
Female
Human
International Journal of Psychiatry in Medicine
Job Satisfaction
job stress
life satisfaction
Male
Multidisciplinary team
Oberholzer AE
Palliative Care
Palliative Therapy
Prevalence
Qualitative Analysis
Religion
South Africa
terminally Ill Patient
work environment
-
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
June 2018 List
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2018 List
URL Address
<a href="http://doi.org/https://journals.viamedica.pl/palliative_medicine_in_practice/article/view/56160/43289" target="_blank" rel="noreferrer noopener">http://doi.org/https://journals.viamedica.pl/palliative_medicine_in_practice/article/view/56160/43289</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
Parents' needs for physician-parent communication in the face of life-threatening illness: Qualitative analysis
Publisher
An entity responsible for making the resource available
Palliative Medicine in Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
childhood disease; interpersonal communication; life threatening illness; parent; personal needs; physical disease; physician; adolescent; article; child; child death; child hospitalization; clinical article; female; health care system; hospice; human; infant; knowledge; law suit; male; malpractice; personal experience; preschool child; qualitative analysis; school child; semi structured interview
Creator
An entity primarily responsible for making the resource
Janusz B; Walkiewicz M
Description
An account of the resource
Introduction. Parents of a child diagnosed with a life-threatening illness often experience the state of cognitive and emotional disorganization. The key factor determining parents-physicians cooperation is the quality of their relations. That is why physicians should be familiar with conditions that may help or disturb parents to manage this extreme situation. Competent communication leads to more effective treatment as well as fewer medical malpractice claims and lawsuits filed against doctors. Material and methods. The aim of this paper is the description and analysis of the needs of 23 parents whose children were diagnosed with life-threatening illnesses that led to death. The deceased children were treated mainly in hospitals or in hospices. The study was conducted in the period of one up to four years following the death of a child. A semi-structured interview was constructed and used for the purpose of this research. The transcription was analysed according to the rules of Qualitative Content Analysis with applying NVivo 9 software. Results. The results have revealed five categories of parents' needs addressed to physicians: 1) a greater intensity of direct parent-physician contact; 2) experience of doctors' thorough knowledge about the child and their illness; 3) a greater doctors' involvement in the search for the causes of the disease and further treatment; 4) parents' established position in the healthcare system, especially when the treatment lasted for a long time 5) more clear information about the applied treatment and condition of the child. Conclusions. The research indicates that the challenge of communication with parents is not only clear information about the course of a disease, providing facts about functioning of the entire health care system and this is particularly important for the parents whose child has been undergoing a long-term treatment. A physician should emphasise the meaning of palliative care as an integrated system of support. Parents' decision-making about medical treatment on the early stage of an illness may cause too heavy strain to some of them.
Identifier
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<a href="http://doi.org/https://journals.viamedica.pl/palliative_medicine_in_practice/article/view/56160/43289" target="_blank" rel="noreferrer noopener">https://journals.viamedica.pl/palliative_medicine_in_practice/article/view/56160/43289</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Adolescent
Article
Child
Child Death
child hospitalization
Childhood Disease
Clinical Article
Female
Health Care System
Hospice
Human
Infant
Interpersonal Communication
Janusz B
June 2018 List
Knowledge
law suit
Life Threatening illness
Male
malpractice
Palliative Medicine in Practice
Parent
Personal Experience
personal needs
physical disease
Physician
Preschool Child
Qualitative Analysis
School Child
Semi Structured Interview
Walkiewicz M
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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/10.1177/2632352419892629" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/2632352419892629</a>
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Title
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Patients' priorities in a reminiscence and legacy intervention in palliative care
Publisher
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Palliative Care & Social Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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article; authorship and/or publication of this; biography; identity; interest with respect to the research; palliative care; qualitative analysis; reminiscence
Creator
An entity primarily responsible for making the resource
Hesse M; Forstmeier S; Ates G; Radbruch L
Description
An account of the resource
Background: Reminiscence is used in a range of different interventions in palliative care, for example, Dignity Therapy or Life Review. However, literature has focused mainly on the methodology, and little has been published on patients' priorities and primary concerns. Objective: This study looks at themes emerging in a reminiscence intervention with patients confronted with a life-limiting disease. Interviews were audiotaped and transcribed verbatim. Transcripts were analysed using thematic analysis. Setting/subjects: Seventeen patients who were receiving palliative care at the University Hospital Bonn participated in interviews reviewing parts or phases of their lives. Results: Patients expressed satisfaction and a sense of well-being with the intervention. Major themes emerging in the interviews were the factors involved in the development and expression of personality, such as character-forming influences, self-image, self-awareness, and philosophy of life. Talking about personality was entangled with influences from growing up, qualification/job, partner/spouse, children, resources, twists of fate/crossroads, and coping. Conclusion: The topics emerging from the interviews differed from the scope of guiding questions in common reminiscence methods like Life Review or Dignity Therapy. The underlying motivation of patients seemed to be the search for identity and continuity in one's life.
Identifier
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<a href="http://doi.org/10.1177/2632352419892629" target="_blank" rel="noreferrer noopener">10.1177/2632352419892629</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Article
Ates G
authorship and/or publication of this
Biography
Forstmeier S
Hesse M
Identity
interest with respect to the research
May 2020 List
Palliative Care
Palliative Care & Social Practice
Qualitative Analysis
Radbruch L
reminiscence
-
Dublin Core
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Title
A name given to the resource
2020 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 2020 List
URL Address
<a href="http://doi.org/10.1200/jco.2020.38.15_suppl.e19002" target="_blank" rel="noreferrer noopener">http://doi.org/10.1200/jco.2020.38.15_suppl.e19002</a>
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Title
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Pediatric cancer care in Armenia: The results of a qualitative analysis
Publisher
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Journal of Clinical Oncology. Conference
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
pediatrics; cancer; qualitative analysis; Armenia
Creator
An entity primarily responsible for making the resource
Hovhannisyan S; Papyan R; Sargsyan L; Danielyan S; Vagharshakyan L; Avagyan A A; Hoveyan J; Tamamyan G
Description
An account of the resource
Background: In Armenia the incidence of pediatric cancer accounts for around 80-100 cases per year. This qualitative study was conducted in 2018 to evaluate the needs and challenges in a provision of pediatric cancer care in Armenia. Comparative qualitative study was conducted in 2020 to evaluate the progress in the field. Method(s): Qualitative research methods were incorporated to evaluate the achievements, needs and challenges in a provision of childhood cancer care in Armenia. Semistructured in-depth interviews were conducted with selected study participants including pediatric oncologist/hematologists, pediatric surgeons, who also treat cancer patients, and radiation oncologists. Purposive sampling technique and qualitative conventional content analysis methods were used. Result(s): Data collected in January 2020 has shown significant improvements in the field of pediatric oncology in Armenia. In the 2018 study, some of the major issues included lack of centralized pediatric cancer care, pediatric cancer registry, palliative care center, possibility of providing highdose methotrexate, limited nursing training, multidisciplinary team approaches and use of central catheters. Within two years, majority of these problems were solved or are in the process. In 2019 all 3 pediatric oncology and hematology units were merged and the Pediatric Cancer and Blood Disorders of Armenia was created; with the support from charitable foundations all children with cancer receive free medical and psychosocial coverage; a 25 year data has been collected from all the possible sites, the first pediatric cancer palliative care is under construction, 4 multidisciplinary cancer teams were created, pediatric oncology and hematology fellowship was created at the Yerevan State Medical University to prepare for the first time "pediatric oncologist-hematologist" as a one profession. The existing major problems include very limited provision of pediatric cancer medications by the government, as well as lack of the official registration of the number of essential drugs included in the WHO list. Conclusion(s):Twinning programs, multidisciplinary team discussions with international experts, improvement in availability of several resources, professional development of the staff are major tools for the progress of pediatric oncology in Armenia. Poor provision and official registration of anti-neoplastic medications by the government still remain a major obstacle.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1200/jco.2020.38.15_suppl.e19002" target="_blank" rel="noreferrer noopener">10.1200/jco.2020.38.15_suppl.e19002</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
Armenia
Avagyan A A
Cancer
Danielyan S
Developing World 2020 List
Hoveyan J
Hovhannisyan S
Journal of Clinical Oncology. Conference
Papyan R
Pediatrics
Qualitative Analysis
Sargsyan L
Tamamyan G
Vagharshakyan L
-
Dublin Core
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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
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Title
A name given to the resource
Pediatric intensivist end-of-life practices and attitudes in Vietnam
Publisher
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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
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<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
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
August 2018 List
Rights
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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
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2018 List
URL Address
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216318769196</a>
Dublin Core
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Title
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Qualitative evaluation of the impact of a paediatric palliative care family support volunteering project
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
human; child; female; male; palliative therapy; controlled study; major clinical study; conference abstract; sibling; quality of life; human experiment; semi structured interview; skill; volunteer; staff; questionnaire; qualitative analysis; gardening; housekeeping; leadership; shopping
Creator
An entity primarily responsible for making the resource
Scott R; Chambers L; McNamara K
Description
An account of the resource
Background: Families caring for a child with a life limiting condition not only provide 24 hour complex care but also must care for siblings and cope with everyday tasks. Research suggests families could benefit from 'domestic support' (Fraser et al, 2015). This abstract reports on a qualitative evaluation of the second phase of a pilot project offering volunteer home support to such families. Three pilot sites were involved including voluntary and NHS community children's palliative care (CPC) teams. Method: Qualitative questionnaires were completed by families, staff, volunteers and strategic leaders before and after the pilot, followed by small number of semi-structured interviews to explore experiences in more depth. Results: Volunteers provided a range of support including, housework, gardening, shopping homework with siblings and taking siblings to and from school. Sixty volunteers were recruited and 62 families matched with volunteers. As a result of volunteer support, 100% of families reported improvement in quality of life, 95% feeling less stressed and more able to cope with 65% feeling less isolated. All volunteers (100%) felt valued, 84% increased skills and confidence and 92% wished to continue volunteering. The project enabled pilot sites to extend the range of support offered and increased organisational capacity. Volunteers enriched the organisation and brought new ideas and impetus. Volunteers were able to respond quickly and appropriately in crisis situations. Challenges identified included some families feeling that the offer of volunteer help implied that they were not coping, volunteers ' availability not always matching families preferred times and allowing enough time for planning and set up. A set of online resources were developed as part of the project. These include guidance on planning and implementation in different settings are now freely available. Conclusion: This evaluation suggests that families benefit greatly from volunteer support in the home and may be of value to other CPC services considering how too extend their support to families. A subsequent evaluation, with reflections on sustainability replicability is underway.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</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
August 2018 List
Chambers L
Child
conference abstract
Controlled Study
Female
gardening
housekeeping
Human
Human Experiment
Leadership
Major Clinical Study
Male
McNamara K
Palliative Medicine
Palliative Therapy
Qualitative Analysis
Quality Of Life
Questionnaire
Scott R
Semi Structured Interview
shopping
Sibling
Skill
Staff
Volunteer
-
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
2020 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.010" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.08.010</a>
Dublin Core
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Title
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Seven Types of Uncertainty When Clinicians Care for Pediatric Patients With Advanced Cancer
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
child; human; palliative therapy; controlled study; article; pediatrics; childhood cancer; patient referral; Uncertainty; qualitative analysis; cancer patient; cancer prognosis; oncologist; pediatric patient; semi structured interview; organization; care behavior; Advanced cancer
Creator
An entity primarily responsible for making the resource
Hill D L; Walter J K; Szymczak J E; DiDomenico C; Parikh S; Feudtner C
Description
An account of the resource
Context: Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative referral intervention for oncology teams we explored how uncertainty might influence palliative care referrals.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.010" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.08.010</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
Advanced Cancer
Article
Cancer Patient
Cancer Prognosis
care behavior
Child
Childhood Cancer
Controlled Study
DiDomenico C
Feudtner C
Hill D L
Human
Journal of Pain and Symptom Management
Oncologist
Oncology 2020 List
Organization
Palliative Therapy
Parikh S
Patient Referral
pediatric patient
Pediatrics
Qualitative Analysis
Semi Structured Interview
Szymczak J E
Uncertainty
Walter J K
-
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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December 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
December 2020 List
URL Address
<a href="http://doi.org/10.1542/hpeds.2020-0075" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/hpeds.2020-0075</a>
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Title
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Shared Decision-making With Parents of Hospitalized Children: A Qualitative Analysis of Parents' and Providers' Perspectives
Publisher
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Hospital Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
parent perspectives; provider perspectives; qualitative analysis; shared decision-making
Creator
An entity primarily responsible for making the resource
Hoang K; Halpern-Felsher B; Brooks M; Blankenburg R
Description
An account of the resource
OBJECTIVES: Shared decision-making (SDM) is the pinnacle of patient-centered care and has been shown to improve health outcomes, especially for children with chronic medical conditions. However, parents perceive suboptimal involvement during hospitalization. The objective was to explore the perspectives of parents of hospitalized children and their hospital providers on facilitators and barriers to SDM in the hospital and identify strategies to increase SDM. METHODS: A qualitative study was conducted by using semistructured interviews with parents of hospitalized children with and without complex chronic conditions and their pediatric hospital medicine faculty. Parents and faculty were matched and individually interviewed on the same day. Two investigators iteratively coded transcripts and identified themes using modified grounded theory, with an additional author reviewing themes. RESULTS: Twenty-seven parents and 16 faculty participated in the interviews. Four themes emerged: (1) parents and providers value different components of SDM; (2) providers assume SDM is easier with parents of children with medical complexity; (3) factors related to providers, parents, patients, and family-centered rounds were identified as barriers to SDM; and (4) parents and providers identified strategies to facilitate SDM in the hospital. CONCLUSIONS: There is a discrepancy between parents' and providers' understanding of SDM, with parents most valuing their providers' ability to actively listen and explain the medical issue and options with them. There are many barriers that exist that make it difficult for both parties to participate. Several strategies related to family-centered rounds have been identified that can be implemented into clinical practice to mitigate these barriers.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/hpeds.2020-0075" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2020-0075</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
Blankenburg R
Brooks M
December 2020 List
Halpern-Felsher B
Hoang K
Hospital Pediatrics
parent perspectives
provider perspectives
Qualitative Analysis
Shared Decision-making
-
Dublin Core
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Title
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Special Edition #2 2022 List
Text
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Citation List Month
Special Edition #2
URL Address
<a href="http://doi.org/10.1542/hpeds.2020-0075" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/hpeds.2020-0075</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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Shared Decision-making With Parents of Hospitalized Children: A Qualitative Analysis of Parents' and Providers' Perspectives
Publisher
An entity responsible for making the resource available
Hospital Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
parent perspectives; provider perspectives; qualitative analysis; shared decision-making
Creator
An entity primarily responsible for making the resource
Hoang K; Halpern-Felsher B; Brooks M; Blankenburg R
Description
An account of the resource
OBJECTIVES: Shared decision-making (SDM) is the pinnacle of patient-centered care and has been shown to improve health outcomes, especially for children with chronic medical conditions. However, parents perceive suboptimal involvement during hospitalization. The objective was to explore the perspectives of parents of hospitalized children and their hospital providers on facilitators and barriers to SDM in the hospital and identify strategies to increase SDM. METHODS: A qualitative study was conducted by using semistructured interviews with parents of hospitalized children with and without complex chronic conditions and their pediatric hospital medicine faculty. Parents and faculty were matched and individually interviewed on the same day. Two investigators iteratively coded transcripts and identified themes using modified grounded theory, with an additional author reviewing themes. RESULTS: Twenty-seven parents and 16 faculty participated in the interviews. Four themes emerged: (1) parents and providers value different components of SDM; (2) providers assume SDM is easier with parents of children with medical complexity; (3) factors related to providers, parents, patients, and family-centered rounds were identified as barriers to SDM; and (4) parents and providers identified strategies to facilitate SDM in the hospital. CONCLUSIONS: There is a discrepancy between parents' and providers' understanding of SDM, with parents most valuing their providers' ability to actively listen and explain the medical issue and options with them. There are many barriers that exist that make it difficult for both parties to participate. Several strategies related to family-centered rounds have been identified that can be implemented into clinical practice to mitigate these barriers.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/hpeds.2020-0075" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2020-0075</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
2022 Special Edition 2 - Parent Perspectives
Blankenburg R
Brooks M
Halpern-Felsher B
Hoang K
Hospital Pediatrics
parent perspectives
provider perspectives
Qualitative Analysis
Shared Decision-making
-
Dublin Core
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Title
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February 2021 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 2021 List
URL Address
<a href="http://doi.org/10.1044/2020_ajslp-20-00090" target="_blank" rel="noreferrer noopener">http://doi.org/10.1044/2020_ajslp-20-00090</a>
Dublin Core
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Title
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Speech-Language Pathologists in Pediatric Palliative Care: An International Study of Perceptions and Experiences
Publisher
An entity responsible for making the resource available
American Journal of Speech-Language Pathology
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
families; multidisciplinary; palliative care; Patient Care; pediatric; qualitative analysis; speech-language pathology
Creator
An entity primarily responsible for making the resource
Krikheli L; Erickson S; Carey LB; Carey-Sargeant CL; Mathisen BA
Description
An account of the resource
Purpose The purpose of this study is to gather qualitative data regarding the experiences and perceptions of speech-language pathologists (SLPs) practicing in pediatric palliative care (PPC) and investigate their approaches for working with patients, families, and the multidisciplinary team. Method Ten participants from Australia, Canada, and the United States were recruited from a previous survey study. In-depth interviews were conducted via videoconferencing. Two coders used NVivo software to record and organize the data into themes. Interrater reliability of the coding was established with a third coder. The COnsolidated criteria for REporting Qualitative research 32-item checklist has been used for reporting the research. Results Interrater coding reliability (using weighted kappa) was .81, indicating "almost perfect" agreement on the selection of themes from the code frame. Emerging themes included clinical interventions, unique SLP skills in PPC, multidisciplinary team relationships, workforce issues, education and training, governance, medicolegal considerations, bioethical issues, and holistic care. Additional subthemes are also noted. In the absence of research evidence and practice recommendations, SLPs rely on client perspectives and clinical experience to guide their professional practice in PPC. Conclusions Qualitative survey analysis of the perceptions and experiences of SLP clinicians from three postindustrial countries identified nine major themes regarding PPC. Results expand on limited literature to date in the area of PPC. Future research using larger samples is needed to provide clinicians with best practice recommendations for working with patients, families, and the broader care team.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1044/2020_ajslp-20-00090" target="_blank" rel="noreferrer noopener">10.1044/2020_ajslp-20-00090</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
American Journal of Speech-Language Pathology
Carey LB
Carey-Sargeant CL
Erickson S
Families
February 2021 List
Krikheli L
Mathisen BA
multidisciplinary
Palliative Care
Patient Care
Pediatric
Qualitative Analysis
speech-language pathology
-
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
December 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
December 2019 List
URL Address
<a href="http://doi.org/10.1177/1049909119879413" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909119879413</a>
Dublin Core
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Title
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The Experience of Pediatric Palliative Caregiving: A Qualitative Analysis From the Photographs of Meaning Program
Publisher
An entity responsible for making the resource available
The American journal of hospice & palliative care
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
article; care behavior; caregiver; child; curriculum; female; human; human experiment; male; meaning making; narrative; palliative therapy; pediatrics; photography; qualitative analysis; qualitative research; social media
Creator
An entity primarily responsible for making the resource
Levy K; Grant PC; Tenzek KE; Depner RM; Pailler ME; Beaupin LK
Description
An account of the resource
The Photographs of Meaning Program for pediatric palliative caregivers (POM-PPCG) is an innovative, meaning-based intervention utilizing photovoice and social media components. In 2017, 9 pediatric palliative caregivers participated in this intervention. During the social media portion of the POM-PPCG, participants were presented with weekly themes based on a meaning-making curriculum. In response, they took photographs, applied either audio or typed narratives, and shared them via social media. Ninety-five photographs with narratives were produced during the intervention. Through thematic qualitative analysis with consensual qualitative research components, 5 themes were identified: Love, Challenges, Loss, Coping, and The New Normal. This study adds to existing literature by shedding light on the experiences of caregivers of children with palliative care needs. Findings from this research contribute not only to the innovative use of qualitative methods but also to the clinical knowledge and practice regarding the pediatric palliative caregiver experience.
Identifier
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<a href="http://doi.org/10.1177/1049909119879413" target="_blank" rel="noreferrer noopener">10.1177/1049909119879413</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).
2019
Article
Beaupin LK
care behavior
Caregiver
Child
Curriculum
December 2019 List
Depner RM
Female
Grant PC
Human
Human Experiment
Levy K
Male
meaning making
Narrative
Pailler ME
Palliative Therapy
Pediatrics
Photography
Qualitative Analysis
Qualitative Research
social media
Tenzek KE
The American Journal of Hospice & Palliative Care
-
Text
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Citation List Month
September 2017 List
Notes
<p>Using Smart Source Parsing ( (pp 2017. Date of Publication: July 2017</p>
Dublin Core
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Title
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The Impact Of A Sibling's Life-limiting Genetic Condition On Adult Brothers And Sisters
Publisher
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American Journal Of Medical Genetics Part A
Date
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2017
Subject
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Family Attitude; Sibling; Sibling Attitude; Trisomy 13; Trisomy 18; Adult; Article; Brother; Coping Behavior; Female; Genetic Disorder; Grief; Human; Male; Parental Attitude; Peer Group; Priority Journal; Psychological Resilience; Qualitative Analysis; Sister; Structured Interview; Wellbeing
Creator
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Brown E; Coad J; Franklin A
Description
An account of the resource
It is estimated that rare diseases affect the lives of over three million people in the United Kingdom. Of these, a significant proportion are children and young people with genetic life-limiting or life-shortening conditions. This study used a qualitative approach with in-depth semi-structured interviews to explore the experiences of 10 adult siblings of a baby diagnosed with Trisomy 13 (Patau syndrome) or Trisomy 18 (Edward syndrome). Findings illustrate that parental grief from the time of their child's diagnosis onward is also experienced by siblings. Although young adults may have conflicting feelings as a bereaved sibling, there is evidence that the experience impacts on their world views and their attitudes about prospective and expectant parenthood. The study highlights the importance of providing siblings with short-term and long-term support from the time of their brother's or their sister's diagnosis onward and provides new understanding about benefit of professional and peer support in helping young adults develop resilience and coping strategies.
Identifier
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10.1002/ajmg.a.38213
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
Adult
American Journal of Medical Genetics Part A
Article
Brother
Brown E
Coad J
Coping Behavior
Family Attitude
Female
Franklin A
Genetic Disorder
Grief
Human
Male
Parental Attitude
Peer Group
Priority Journal
Psychological Resilience
Qualitative Analysis
September 2017 List
Sibling
Sibling Attitude
Sister
Structured Interview
Trisomy 13
Trisomy 18
Wellbeing