1
40
2
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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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September 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
September 2019 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2019-001766" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2019-001766</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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Family caregivers of children and adolescents with rare diseases: a novel palliative care intervention
Publisher
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BMJ Supportive Palliative Care
Date
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2019
Subject
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decision making; end-of-life; family caregiver; intervention; intervention. She receives a small royalty.; palliative care needs; pediatric advanced care planning; rare disease
Creator
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Lyon ME; Thompkins JD; Fratantoni K; Fraser JL; Schellinger SE; Briggs L; Friebert S; Aoun S; Cheng YI; Wang J
Description
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OBJECTIVE: To develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare)). METHODS: FACE-Rare development involved an iterative, family-guided process including review by a Patient and Family Advisory Council, semistructured family interviews and adaptation of two evidence-based person-centred approaches and pilot testing their integration. Eligible families were enrolled in FACE-Rare (the Carer Support Needs Assessment Tool (CSNAT) Approach Paediatric sessions 1 and 2; plus Respecting Choices Next Steps pACP intervention sessions 3 and 4). Satisfaction, quality of communication and caregiver appraisal were assessed. RESULTS: Parents were mean age 40 years, and children 7 years. Children's diseases were rare enough that description would identify patients. All children were technology dependent. Telemedicine, used with four of seven families, was an effective engagement strategy and decreased subject burden. Families found FACE-Rare valuable following a strategy that first elicited palliative care needs and a support plan. Eight families were approached for pilot testing. Of the seven mothers who agreed to participate, six began session 1, and of those, 100% completed: all four FACE-Rare sessions, baseline and 2-week postintervention assessments, and a written pACP which described their preferences for medical decision-making to share with their providers. 100% reported FACE-Rare was helpful. The top three CSNAT concerns were: knowing what to expect in the future, having enough time for yourself and financial issues. Benchmarks were achieved and questionnaires were acceptable to parents and thus feasible to use in a larger trial. CONCLUSIONS: FACE-Rare provides an innovative, structured approach for clinicians to deliver person-centred care.
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2019-001766" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-001766</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
Aoun S
Bmj Supportive Palliative Care
Briggs L
Cheng YI
Decision Making
end-of-life
family caregiver
Fraser JL
Fratantoni K
Friebert S
Intervention
intervention. She receives a small royalty.
Lyon ME
palliative care needs
pediatric advanced care planning
Rare Disease
Schellinger SE
September 2019 List
Thompkins JD
Wang J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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2018 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 2018 List
URL Address
<a href="http://doi.org/10.1016/j.cct.2017.08.016" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1016/j.cct.2017.08.016</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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Pediatric advance care planning (pACP) for teens with cancer and their families: Design of a dyadic, longitudinal RCCT
Publisher
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Contemporary clinical trials
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Decision Making; Terminal Care/og [Organization & Administration]; Male; Advance Care Planning/og [Organization & Administration]; Young Adult; Communication; Humans; United States; Longitudinal Studies; Adolescent; Neoplasms/px [Psychology]; Female; Research Design; Single-Blind Method; Quality of Life; Family/px [Psychology]; Patient Preference/px [Psychology]
Creator
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Curtin KB; Watson AE; Wang J; Okonkwo OC; Lyon ME
Description
An account of the resource
Cancer is the leading cause of disease-related death for adolescents and young adults (AYAs) in the United States. Parents of AYAs with life-threatening illnesses have expressed the desire to talk to their children about end of life (EOL) care, yet, like caregivers of adult patients, struggle to initiate this conversation. Building Evidence for Effective Palliative/End of Life Care for Teens with Cancer is a longitudinal, randomized, controlled, single-blinded clinical trial aimed at evaluating the efficacy of FAmily CEntered disease-specific advance care planning (ACP) for teens with cancer (FACE-TC). A total of 130 dyads (260 subjects) composed of AYAs 14-20years old with cancer and their family decision maker (>=18years old) will be recruited from pediatric oncology programs at Akron Children's Hospital and St. Jude Children's Research Hospital. Dyads will be randomized to either the FACE-TC intervention or Treatment as Usual (TAU) control. FACE-TC intervention dyads will complete three 60-minute ACP sessions held at weekly intervals. Follow-up data will be collected at 3, 6, 12, and 18months post-intervention by a blinded research assistant (RA). The effects of FACE-TC on patient-family congruence in treatment preferences, quality of life (QOL), and advance directive completion will be analyzed. FACE-TC is an evidenced-based and patient-centered intervention that considers QOL and EOL care according to the AYA's representation of illness. The family is involved in the ACP process to facilitate shared decision making, increase understanding of the AYA's preferences, and make a commitment to honor the AYA's wishes.Copyright � 2017 Elsevier Inc. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/%2010.1016/j.cct.2017.08.016" target="_blank" rel="noreferrer noopener">10.1016/j.cct.2017.08.016</a>
2017
Adolescent
Advance Care Planning/og [Organization & Administration]
Communication
Contemporary Clinical Trials
Curtin KB
Decision Making
Family/px [psychology]
Female
Humans
Longitudinal Studies
Lyon ME
Male
Neoplasms/px [psychology]
Okonkwo OC
Oncology 2018 List
Patient Preference/px [Psychology]
Quality Of Life
Research Design
Single-Blind Method
Terminal Care/og [organization & Administration]
United States
Wang J
Watson AE
Young Adult