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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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February 2021 List
Text
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February 2021 List
URL Address
<a href="http://doi.org/10.1177/0269216320983197" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216320983197</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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Factors associated with health professionals decision to initiate paediatric advance care planning: A systematic integrative 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
2020
Subject
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adolescent; Child; terminal care; palliative care; advance care planning; paediatric; infant; decision making
Creator
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Carr K; Hasson F; McIlfatrick S; Downing J
Description
An account of the resource
BACKGROUND: Advance care planning for children with palliative care needs is an emotionally, legally and complex aspect of care, advocated as beneficial to children, families and health professionals. Evidence suggests healthcare professionals often avoid or delay initiation. An overview of evidence on the factors that influence and impact on the health care professional's initiation of paediatric advance care planning process is lacking. AIM: To review and synthesise evidence on the factors associated with health care professional's decision to initiate paediatric advance care planning. DESIGN: Systematic integrative review using constant comparison method. DATA SOURCES: Electronic databases (CINAHL, PubMed, PsycINFO, Ovid MEDLINE, EMBASE, Web of Science and Cochrane) using MeSH terms and word searches in Oct 2019. No limit set on year of publication or country. Grey literature searches were also completed. RESULTS: The search yielded 4153 citations from which 90 full text articles were reviewed. Twenty-one met inclusion criteria consisting of quantitative (n = 8), qualitative (n = 6) and theoretical (n = 7) studies.Findings revealed overarching and interrelated themes 'The timing of initiation', 'What makes an initiator, 'Professionals' perceptions' and 'Prerequisites to initiation'. CONCLUSIONS: This review provides insights into the complexities and factors surrounding the initiation of advance care planning in paediatric practice. Uncertainty regarding prognosis, responsibility and unpredictable parental reactions result in inconsistent practice. Future research is required to inform intervention to assist health care professionals when initiating paediatric advance care planning conversations.
Identifier
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<a href="http://doi.org/10.1177/0269216320983197" target="_blank" rel="noreferrer noopener">10.1177/0269216320983197</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).
2020
Adolescent
Advance Care Planning
Carr K
Child
Decision Making
Downing J
February 2021 List
Hasson F
Infant
McIlfatrick S
Paediatric
Palliative Care
Palliative Medicine
Terminal Care
-
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
January 2022 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
January 2022 List
URL Address
<a href="http://doi.org/10.1007/s00431-021-04314-6" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00431-021-04314-6</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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Parents' experiences of initiation of paediatric advance care planning discussions: a qualitative study
Publisher
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European Journal of Pediatrics
Date
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2021
Subject
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Children; Advance care planning; Goals of care; Palliative care; Parent's experience; Initiation
Creator
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Carr K; Hasson F; McIlfatrick S; Downing J
Description
An account of the resource
Advance care planning enables parents to discuss their goal and wishes for the future treatment and care of their life-limited or life-threatened child. Whilst research has identified the barriers clinicians face to initiate such discussions, the views of the parents have received scant attention. This qualitative study, using reflexive thematic analysis, aimed to explore parents' experience of the initiation of their child's advance care planning discussions, to help provide an understanding to inform future practice. Single interviews were undertaken with 17 non-bereaved and bereaved parents. Parents reported they had engaged with future thinking but needed time before initiating this with clinicians. They identified the need for a trusted professional and time for private, thorough, non-judgemental discussion without feeling clinicians were 'giving up'. Parents reported that advance care planning discussions were not always aligned to the dynamics of family life. They felt that health professionals were responsible for initiating advance planning conversations according to the families' individual requirements. There was an apparent lack of standardised protocols to assist paediatric advance care planning discussion initiation.Conclusion: Initiating advance care planning is a complicated process that needs to be tailored to the specific parent and child situation. Health professionals need to appreciate that parents are key contributors to initiate engagement with advance care planning discussions but that they also require support and care, recognising this may facilitate the building of trust, identified as a key corner stone, of paediatric advance care planning initiation and engagement. What is Known: • In paediatric palliative care, parents are challenged with wanting to sustain hope whilst thinking and planning for their child's end of life. Paediatric advance care planning discussions are often delayed or avoided and triggered by physical deterioration. What is New: • Previous relationship with HCP not essential but parental trust of the HCP is fundamental to Paediatric advance care planning initiation engagement. To build mutual trust health professionals' approach needs to be professional, respectful and empathetic to the parent and child's situation. • Subtle paediatric advance care planning parent initiation preparation by HCP is often unnoticed by parents but may be the crux of empowering parents to initiate advance care planning conversations themselves as they need to feel a sense of regaining control before planning ahead.
Identifier
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<a href="http://doi.org/10.1007/s00431-021-04314-6" target="_blank" rel="noreferrer noopener">10.1007/s00431-021-04314-6</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).
2021
Advance Care Planning
Carr K
Children
Downing J
European Journal of Pediatrics
Goals Of Care
Hasson F
Initiation
January 2022 List
McIlfatrick S
Palliative Care
Parent's Experience
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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
A name given to the resource
February 2022 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 2022 List
URL Address
<a href="http://doi.org/10.1111/cch.12943" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/cch.12943</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
Initiation of Paediatric Advance Care Planning: Cross Sectional Survey of Health professionals reported behaviour
Publisher
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Child: Care, Health and Development
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Paediatric; Advance care planning; Palliative care; Health professionals; life limited
Creator
An entity primarily responsible for making the resource
Carr K; Hasson F; McIlfatrick S; Downing J
Description
An account of the resource
BACKGROUND: Globally initiation of paediatric advance care planning discussions is advocated early in the illness trajectory however evidence suggests it occurs at crisis points or close to end of life. Few studies have been undertaken to ascertain the prevalence and determinants of behaviour related to initiation by the healthcare professional. METHOD: Underpinned by the Capability, Opportunity, Motivation - Behaviour (COM-B) model for behaviour change, a cross-sectional online survey was conducted in United Kingdom and Ireland using a purposive sample of health professionals. Descriptive and inferential statistics were applied and nonparametric statistical analysis used. Open-ended questions were mapped and correlations between COM-B and demographic profiles identified. RESULTS: Responses (n=140). Paediatric advance care planning was viewed positively however, initiation practices were found to be influenced by wide ranging diagnoses and disease trajectories. While some tools and protocols exist, they were not used in a systematic manner and initiation behaviour was often not guided by them. Initiation was unstandardised, individually led, guided by intuition and experience and based on a range of prerequisites. Such behaviour, combined with inconsistencies in professional development, resulted in varying practice when managing clinical deterioration. Professionals who felt adequately trained initiated more conversations (Capability). Those working in palliative care specialties, hospice settings and doctors initiated more discussions (Opportunity). There was no difference in Motivation between professions, clinical settings, or specialisms, although 25% (n=35) of responses indicated discomfort discussing death and 34% (n=49) worried about families' emotional reaction. CONCLUSION: Although advocated, paediatric advance care planning is a complex process, commonly triggered by the physical deterioration and rarely underpinned by support tools. The COM-B framework was useful in identifying fundamental differences in initiation behaviour however, further research is required to explore the complexity of initiation behaviour and the system within which the care is being delivered to identify influences on initiation.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/cch.12943" target="_blank" rel="noreferrer noopener">10.1111/cch.12943</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).
2021
Advance Care Planning
Carr K
Child: Care, Health and Development
Downing J
February 2022 List
Hasson F
health professionals
life limited
McIlfatrick S
Paediatric
Palliative Care