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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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Oncology
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 2017 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2016-001132" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmjspcare-2016-001132</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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Non-pharmacological interventions for management of fatigue among children with cancer: systematic review of existing practices and their effectiveness
Publisher
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Bmj Supportive Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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Cancer; Children; Complementary Therapy; Fatigue; Non-pharmacological
Creator
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Bhardwaj T; Koffman J
Description
An account of the resource
OBJECTIVES: Fatigue is common among children living with cancer, particularly in advance stages. Little is known about the effectiveness of non-pharmacological approaches to manage this complex and distressing symptom among children. Thus, the present paper aim to critically examine the effectiveness and setting for non-pharmacological interventions to manage fatigue among children with cancer. METHODS: Six electronic databases were screened first in February 2013 and at second instance in March 2015. They include PsycINFO, Medline, EMBASE, CINAHL, Scopus and Cochrane library. All databases were systematically searched for literature on fatigue and cancer, limited to children (as age group) and English language. RESULTS: 1498 articles were identified, of which six were reviewed. Three types of interventions for managing fatigue were identified including (1) complementary and alternative medicine (healing touch/massage therapy), (2) exercise-based interventions and (3) nursing-based interventions. Most interventions were delivered during active treatment and in hospital settings where parents were involved to optimise participation. Despite fatigue scores being lower among intervention groups, no study findings were observed as being statistically significant. CONCLUSION: Fatigue is common among children treated for and living with cancer. The most appropriate setting to deliver non-pharmacological interventions to manage fatigue appears to be in hospital. However, in absence of any strong evidence, professionals need to be cautious about existing non-pharmacological interventions. Future research must adopt more rigorous research designs that are adequately powered using validated measures to identify potential benefits. In addition, researchers may wish to test psychosocial interventions shown to be of benefit in adults.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjspcare-2016-001132" target="_blank" rel="noreferrer">10.1136/bmjspcare-2016-001132</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Bhardwaj T
Bmj Supportive Palliative Care
Cancer
Children
Complementary Therapy
Fatigue
Koffman J
Non-pharmacological
Oncology 2017 List
-
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
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-2018-001705" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2018-001705</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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Children's unmet palliative care needs: a scoping review of parents' perspectives
Publisher
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BMJ Supportive Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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advance care planning; paediatric palliative care; review; hospice care; parental experience; service evaluation
Creator
An entity primarily responsible for making the resource
Constantinou G; Garcia R; Cook E; Randhawa G
Description
An account of the resource
BACKGROUND: Children with life-limiting conditions often have complex needs, making it challenging for services to provide satisfactory care. Few studies consider whether services actually meet families' needs by exploring and identifying the parents' perspectives of unmet needs. AIM: To identify what published evidence is available on the unmet needs of children with life-limiting conditions and their families, from the perspective of parents, internationally. ELIGIBILITY CRITERIA: Inclusion criteria: papers from the perspective of parents of children aged 0-19 years, who have a life-limiting condition and are receiving palliative care. Exclusion criteria: those papers not written in English, not reporting primary research and discussing children who died from stillbirth, accidental or unexpected circumstance. CHARTING METHODS: A scoping review was conducted in accordance with the methods of Arksey and O'Malley. SOURCES OF EVIDENCE: The electronic databases PubMed, MEDLINE, CINAHL and PsycINFO were searched. Key terms included: parent, needs, met/unmet/satisfaction, palliative/supportive/end of life care, life-limiting/life-threatening illness, infants/children/young people. RESULTS: Total hit indicated 5975 papers for screening. Fifty-five papers met the scoping review criteria. The majority used mixed-methods approaches inclusive of: questionnaires, self-report measures, in-depth interviews, focus groups, case record analysis and art-based workshops. Unmet needs included: respite care, coordination and organisation of care, psychological support and professional communication skills. CONCLUSIONS: The findings suggest many unmet needs from the parent's perspective, across several aspects of the Quality Standards and Children's Palliative Care Frameworks. Further research is needed which explores the parent's unmet needs in palliative care services.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjspcare-2018-001705" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001705</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
Advance Care Planning
Bmj Supportive Palliative Care
Constantinou G
Cook E
Garcia R
Hospice Care
paediatric palliative care
parental experience
Randhawa G
Review
September 2019 List
Service Evaluation
-
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
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
An entity responsible for making the resource available
BMJ Supportive 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
decision making; end-of-life; family caregiver; intervention; intervention. She receives a small royalty.; palliative care needs; pediatric advanced care planning; rare disease
Creator
An entity primarily responsible for making the resource
Lyon ME; Thompkins JD; Fratantoni K; Fraser JL; Schellinger SE; Briggs L; Friebert S; Aoun S; Cheng YI; Wang J
Description
An account of the resource
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
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjspcare-2019-001766" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-001766</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
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
A name given to the resource
Oncology
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 2017 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2015-000852" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmjspcare-2015-000852</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
GPs and paediatric oncology palliative care: a Q methodological study
Publisher
An entity responsible for making the resource available
Bmj Supportive Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Bereavement; Cancer; General Practitioner; Home Care; Paediatrics; Terminal Care
Creator
An entity primarily responsible for making the resource
Neilson S; Gibson F; Jeffares S; Greenfield SM
Description
An account of the resource
OBJECTIVE: This mixed-methods study set in the West Midlands region of the UK demonstrates the effectiveness of Q methodology in examining general practitioners' (GPs') perception of their role in children's oncology palliative care. METHODS: Using data obtained from the analysis of semistructured interviews with GPs who had cared for a child receiving palliative care at home and bereaved parents, 50 statements were identified as representative of the analysis findings. 32 GPs with a non-palliative child with cancer on their caseload were asked to rank the statements according to their level of agreement/disagreement on a grid. They were then asked to reflect and comment on the statements they most and least agreed with. The data were analysed using a dedicated statistical software package for Q analysis PQMethod V.2.20 (Schmolck 2012). A centroid factor analysis was undertaken initially with 7 factors then repeated for factors 1-6. Varimax and manual flagging was then completed. RESULTS: 4 shared viewpoints were identified denoting different GP roles: the GP, the compassionate practitioner, the team player practitioner and the pragmatic practitioner. In addition consensus (time pressures, knowledge deficits, emotional toll) and disagreement (psychological support, role, experiential learning, prior relationships) between the viewpoints were identified and examined. CONCLUSIONS: Q methodology, used for the first time in this arena, identified 4 novel and distinct viewpoints reflecting a diverse range of GP perspectives. Appropriately timed and targeted GP education, training, support, in conjunction with collaborative multiprofessional working, have the potential to inform their role and practice across specialities.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjspcare-2015-000852" target="_blank" rel="noreferrer">10.1136/bmjspcare-2015-000852</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Bereavement
Bmj Supportive Palliative Care
Cancer
General Practitioner
Gibson F
Greenfield SM
Home Care
Jeffares S
Neilson S
Oncology 2017 List
Paediatrics
Terminal Care