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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/10.1016/j.jpainsymman.2023.02.002" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.02.002</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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Parent and Provider Perspectives of a Hospital-Based Bereavement Support Program in Pediatric Palliative Care
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
2023
Subject
The topic of the resource
bereavement; bereavement support; grief; palliative therapy; questionnaire; article; Bereavement; child; cross-sectional study; expectation; female; human; human experiment; major clinical study; male; Palliative Care; pediatric hospital; program impact
Creator
An entity primarily responsible for making the resource
Gundry A; Elvidge N; Donovan L; Bunker K; Herbert A; Bradford N
Description
An account of the resource
Abstract Context: Bereavement is an individuated, nuanced experience, and its expression is different for each parent who has cared for a dying child. Evidence highlights support is valuable to navigate this loss. Objectives: To evaluate a Bereavement Support Program from the perspectives of both families and service providers. Methods: A cross-sectional study design explored the experiences and perspectives of the benefits of various program components. Respondents were asked about accessing program components, their expectations, and parents were asked to rate the impact of program components on their grief on a scale from one, (no impact) to 100 (positive impact). Space for free text was provided throughout for additional feedback. Setting/ participants: The survey was distributed through mailing lists of parents known to the service, referring service providers, and advertised in the program newsletter. Results: One hundred two respondents completed the survey and provided detailed comments about their experiences. Most interactions and program components were reported helpful by both parents and service providers. Parents (N = 60) reported a positive impact on grief across all program components (median impact on grief range 81-98, Interquartile range 68.5-99). There were, however, a considerable number of respondents who were unaware of some components. Conclusion: Bereavement care to navigate the devastating loss of a child is of paramount importance and can offer significant and beneficial resources for families. Findings have supported service development in a major tertiary paediatric hospital facilitating improved access for families, particularly for those in regional and rural locations.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.02.002" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.02.002</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Article
Bereavement
Bereavement Support
Bradford N
Bunker K
Child
Cross-sectional Study
Donovan L
Elvidge N
Expectation
Female
Grief
Gundry A
Herbert A
Human
Human Experiment
Journal of Pain and Symptom Management
Major Clinical Study
Male
May List 2023
Palliative Care
Palliative Therapy
Pediatric Hospital
program impact
Questionnaire
-
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/10.1089/jpm.2019.0163" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2019.0163</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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Enhancing Connections-Palliative Care: A Quasi-Experimental Pilot Feasibility Study of a Cancer Parenting Program
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
2020
Subject
The topic of the resource
child; human; palliative therapy; preschool child; controlled study; hospice; article; child parent relation; adolescent; Self Concept; anxiety; depression; distress syndrome; skill; metastasis; nurse; advanced cancer; feasibility study; disease course; telephone; program impact; psychological adjustment; tumor-related gene
Creator
An entity primarily responsible for making the resource
Lewis F M; Loggers E T; Phillips F; Palacios R; Tercyak K P; Griffith K A; Shands M E; Zahlis E H; Alzawad Z; Almulla H A
Description
An account of the resource
Background: In 2018, >75,000 children were newly affected by the diagnosis of advanced cancer in a parent. Unfortunately, few programs exist to help parents and their children manage the impact of advanced disease together as a family. The Enhancing Connections-Palliative Care (EC-PC) parenting program was developed in response to this gap.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2019.0163" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0163</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adolescent
Advanced Cancer
Almulla H A
Alzawad Z
anxiety
Article
Child
Child Parent Relation
Controlled Study
Depression
Disease Course
Distress Syndrome
Feasibility Study
Griffith K A
Hospice
Human
Journal of Palliative Medicine
Lewis F M
Loggers E T
Metastasis
Nurse
Oncology 2020 List
Palacios R
Palliative Therapy
Phillips F
Preschool Child
program impact
psychological adjustment
Self Concept
Shands M E
Skill
Telephone
Tercyak K P
tumor-related gene
Zahlis E H
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/144/2_MeetingAbstract/442">https://pediatrics.aappublications.org/content/144/2_MeetingAbstract/442</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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Development of an innovative program to improve provision of palliative and hospice care to children and families in the community: The story of QoLA Kids
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
cancer patient; cancer prognosis; catchment; child; childhood cancer; conference abstract; controlled study; counselor; distress syndrome; female; Hospice Care; hospital personnel; human; magnet; major clinical study; male; nurse practitioner; outpatient; palliative therapy; patient referral; pediatric hospital; pediatric patient; prognosis; program impact; quality of life; registered nurse; social worker
Creator
An entity primarily responsible for making the resource
Kiefer A C; Kaye E C; Blazin L J; Baker J N
Description
An account of the resource
Background: Approximately 500,000 children in the United States suffer from serious illnesses each year and 50,000 die annually. Hospice and palliative care services are known to be beneficial for many children with serious illnesses and their families; however, hospice services only reach about 10% of eligible children who die in the United States, with the majority of pediatric patients receiving care through adult hospice organizations. Program Design: The Quality of Life for All (QoLA) Kids program, established in August 2012, is an outpatient, community-based pediatric palliative care and hospice program that strives to enhance quality of life for pediatric patients and families, provide care coordination across multiple settings, mitigate physical, psychosocial, and spiritual distress, ensure a comfortable and peaceful death in the patient's preferred setting, and support bereaved family members and hospital staff. The program represents a partnership between two MAGNET-certified pediatric hospitals and a local home health and hospice agency. QoLA Kids comprises an extensive interdisciplinary team including physicians, nurse practitioners, registered nurses, medical social workers, spiritual counselors, child life specialists, and administrative support staff. Patients are enrolled on either the palliative care or hospice arm of the program, with flexibility to transition easily between arms as clinical status and goals of care evolve. Eligibility for the hospice arm necessitates an expected prognosis of 6 months or less left to live. Program Impact: Since programmatic inception nearly 6 years ago, QoLA Kids has served a total of 330 children and families in the local catchment area. Approximately 41% of patients (n=135) were enrolled on the palliative arm, with the remaining 59% enrolled on hospice (n=195). Between 2012-2017, the mean number of days from enrollment to death was 142 days for patients on the hospice arm (n=76) and 288 for patients on the palliative care arm (n=5). The percentage of patients with malignancies who received palliative care prior to death increased from 71% to 97% within 2 years following program implementation. Conclusions/Future Directions: QoLA Kids is an innovative program that facilitates the provision of palliative care and hospice services and resources to children with serious illness and their families in the community. Through this program, children and families have been able to access palliative care services in their community well before the end of life. After program initiation, an increase in the number of palliative care consults was also seen within the pediatric oncology patient population suggesting that the program may provide an incentive for referral to palliative care. Further investigation is needed to identify optimal metrics for ascertaining the physical and psychosocial benefits from this innovative program.
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
Baker J N
Blazin L J
Cancer Patient
Cancer Prognosis
catchment
Child
Childhood Cancer
conference abstract
Controlled Study
Counselor
Distress Syndrome
Female
Hospice Care
hospital personnel
Human
Kaye E C
Kiefer A C
magnet
Major Clinical Study
Male
March 2020 List
Nurse Practitioner
Outpatient
Palliative Therapy
Patient Referral
Pediatric Hospital
pediatric patient
Pediatrics
Prognosis
program impact
Quality Of Life
registered nurse
Social Worker