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40
3
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Text
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.2147/COAYAS29735" target="_blank" rel="noreferrer">http://doi.org/10.2147/COAYAS29735</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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Assessment of psychosocial outcomes in adolescents and young adults with cancer: a systematic review of available instruments
Publisher
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Clinical Oncology In Adolescents And Young Adults
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
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Disease Specific
Creator
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Wakefield CE; Patterson P; McDonald FEJ; Wilson HL; Davis E; Sansom-Daly UM
Description
An account of the resource
Purpose: Given the burgeoning body of research relating to the psychosocial needs of adolescents and young adults (AYAs) with cancer, this review aimed to evaluate the psychometric properties and appropriateness of the instruments available for use in this unique population. Specifically, we reviewed published instruments developed to assess psychological distress (depression, anxiety, stress, and fear of recurrence), psychological growth (resilience, posttraumatic growth, and benefit finding), unmet needs, coping, quality of life, identity, and mindfulness-based practices and skills in AYAs with cancer. Given the dearth of validated instruments targeting AYAs with cancer, this review also provides a summary of promising measures yet to be formally validated in this population. Methods: Five electronic databases were searched by a team of six researchers, and studies involving AYAs (who have or have had cancer) aged 15–30 years, and published between 1982 and 2012 were reviewed. Of 410 abstracts, 7 instruments were identified as validated in this population, with a further 19 identified as promising. Results: While there are numerous scales to assess psychosocial outcomes in cancer, few have been specifically validated for AYAs affected by cancer, particularly in the domains of psychological distress, psychological growth, coping, unmet needs, and identity. There are relatively more instruments validated, or promising, for assessment of quality of life than scales for other domains. Conclusion: In the AYA context, scale selection should be undertaken with thought directed towards the characteristics of this sample (eg, developmental maturity, literacy, and social context), the practicalities of the setting (eg, available funding and resources, time restrictions, and researcher expertise), and the science underlying the scale (eg, theoretical framework and psychometric properties). While multiple measures of psychosocial outcomes are frequently used in AYAs, further research is clearly needed to provide rigorous evidence of the reliability and validity of these tools in young people affected by cancer.
2013
Identifier
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<a href="http://doi.org/10.2147/COAYAS29735" target="_blank" rel="noreferrer">10.2147/COAYAS29735</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).
Type
The nature or genre of the resource
Journal Article
2013
Backlog
Clinical Oncology In Adolescents And Young Adults
Davis E
Disease Specific
Journal Article
McDonald FEJ
Patterson P
Sansom-Daly UM
Wakefield CE
Wilson HL
-
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/10.1177/0269216314556851" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216314556851</a>
<a href="http://pmj.sagepub.com/content/early/2014/11/12/0269216314556851" target="_blank" rel="noreferrer">http://pmj.sagepub.com/content/early/2014/11/12/0269216314556851</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Hospital-based bereavement services following the death of a child: A mixed study review
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
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Child; bereavement; Death; systematic review; hospitals—pediatric
Creator
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Donovan LA; Wakefield CE; Russell V; Cohn RJ
Description
An account of the resource
Background: There has been a breadth of research on the grief experience of parents following the death of a child. However, the role and impact of hospital-based bereaved services remain unclear. Aim: To identify services offered to bereaved families in perinatal, neonatal, and pediatric hospital settings and summarize the psychosocial impact of these services and published recommendations for best practice hospital-based bereavement care. Design: Systematic review of qualitative, quantitative, and mixed method studies guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses checklist and methodological quality appraised in accordance with the Mixed Method Appraisal Tool. Data sources: MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health, and PsychINFO were searched to find studies describing hospital-based bereavement services/interventions for parents, siblings, and grandparents. Results: In all, 14 qualitative, 6 quantitative, and 10 mixed method studies were identified. Nine descriptive articles were also included. Qualitatively, family members described feeling cared for and supported by staff, a reduction in sense of isolation, and improved coping and personal growth. Quantitatively, bereavement services have most effect for parents experiencing more complex mourning. It is recommended that bereavement services be theoretically driven and evidence based, offer continuity of care prior to and following the death of a child, and provide a range of interventions for the “whole family” and flexibility in service delivery. Conclusions: There is a role for transitional hospital-based services/interventions for families in the lead up to and following the death of a child. Further mixed method research is required to inform best practice bereavement care guidelines in the perinatal, neonatal, and pediatric hospital settings.
2014-11
Identifier
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<a href="http://doi.org/10.1177/0269216314556851" target="_blank" rel="noreferrer">10.1177/0269216314556851</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).
Type
The nature or genre of the resource
Journal Article
2014
Backlog
Bereavement
Child
Cohn RJ
Death
Donovan LA
hospitals—pediatric
Journal Article
Palliative Medicine
Russell V
Systematic Review
Wakefield CE
-
Dublin Core
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Title
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2022 Special Edition 3 - Oncology List
Text
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Citation List Month
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1371/journal.pone.0270797" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1371/journal.pone.0270797</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer
Publisher
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PLOS ONE
Date
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2022
Creator
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Sansom-Daly UM; Wiener L; Darlington AS; Poort H; Rosenberg AR; Weaver MS; Schulte F; Anazodo A; Phillips C; Sue L; Herbert AR; Mack JW; Lindsay T; Evans H; Wakefield CE; Global Adolescent and Young Adult Cancer Accord End-of-Life Study Group
Description
An account of the resource
For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established, however, many health-professionals do not feel confident leading these conversations, leaving gaps in the implementation of best-practice end-of-life communication. We present a protocol for a Delphi study informing the development and implementation of clinician training to strengthen health-professionals' capacity in end-of-life conversations. Our approach will inform training to address barriers to end-of-life communication with adolescents and young adults across Westernized Adolescent and Young Adult Cancer Global Accord countries. The Adolescent and Young Adult Cancer Global Accord team involves 26 investigators from Australia, New Zealand, the United States, Canada and the United Kingdom. Twenty-four consumers, including adolescents and young adults with cancer history and carers, informed study design. We describe methodology for a modified Delphi questionnaire. The questionnaire aims to determine optimal timing for end-of-life communication with adolescents and young adults, practice-related content needed in clinician training for end-of-life communication with adolescents and young adults, and desireability of evidence-based training models. Round 1 involves an expert panel of investigators identifying appropriate questionnaire items. Rounds 2 and 3 involve questionnaires of international multidisciplinary health-professionals, followed by further input by adolescents and young adults. A second stage of research will design health-professional training to support best-practice end-of-life communication. The outcomes of this iterative and participatory research will directly inform the implementation of best-practice end-of-life communication across Adolescent and Young Adult Cancer Global Accord countries. Barriers and training preferences identified will directly contribute to developing clinician-training resources. Our results will provide a framework to support further investigating end-of-life communication with adolescents and young adults across diverse countries. Our experiences also highlight effective methodology in undertaking highly collaborative global research.
Identifier
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<a href="http://doi.org/10.1371/journal.pone.0270797" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0270797</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
2022 Special Edition 3 - Oncology List
Adolescent
Anazodo A
Communication
Consensus
Darlington AS
Death
Delphi Technique
Evans H
Global Adolescent and Young Adult Cancer Accord End-of-Life Study Group
Herbert AR
Humans
Lindsay T
Mack JW
Neoplasms
Neoplasms/th [therapy]
Phillips C
PLoS One
Poort H
Rosenberg AR
Sansom-Daly UM
Schulte F
Sue L
Wakefield CE
Weaver MS
Wiener L
Young Adult