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40
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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
November 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
November 2022 List
URL Address
<a href="http://doi.org/10.1136/bmjopen-2022-064918" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjopen-2022-064918</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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Paediatric Death after Withdrawal of Life-Sustaining Therapies: A Scoping Review Protocol
Publisher
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BMJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Organ Transplantation; Terminal Care; Child; Clinical physiology; Delivery of Health Care; Humans; Paediatric Intensive & Critical Care; Paediatrics; Qualitative Research; Review Literature as Topic
Creator
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Francoeur C; Hornby L; Silva A; Scales NB; Weiss M; Dhanani S
Description
An account of the resource
INTRODUCTION: The physiology of dying after withdrawal of life-sustaining measures (WLSM) is not well described in children. This lack of knowledge makes predicting the duration of the dying process difficult. For families, not knowing this process's duration interferes with planning of rituals related to dying, travel for distant relatives and emotional strain during the wait for death. Time-to-death also impacts end-of-life care and determines whether a child will be eligible for donation after circulatory determination of death. This scoping review will summarise the current literature about what is known about the dying process in children after WLSM in paediatric intensive care units (PICUs). METHODS AND ANALYSIS: This review will use Joanna Briggs Institute methodology for scoping reviews. Databases searched will include Ovid MEDLINE, Ovid Embase, Cochrane Central Register of Controlled Trials via EBM Reviews Ovid, Ovid PsycINFO, CINAHL and Web of Science. Literature reporting on the physiology of dying process after WLSM, or tools that predict time of death in children after WLSM among children aged 0-18 years in PICUs worldwide will be considered. Literature describing the impact of prediction or timing of death after WLSM on families, healthcare workers and the organ donation process will also be included. Quantitative and qualitative studies will be evaluated. Two independent reviewers will screen references by title and abstract, and then by full text, and complete data extraction and analysis. ETHICS AND DISSEMINATION: The review uses published data and does not require ethics review. Review results will be published in a peer-reviewed scientific journal.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjopen-2022-064918" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2022-064918</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).
Child
Paediatrics
Qualitative Research
Terminal Care
2022
Bmj Open
Clinical physiology
Delivery of Health Care
Dhanani S
Francoeur C
Hornby L
Humans
November 2022 List
Organ Transplantation
Paediatric intensive & critical care
Review Literature as Topic
Scales NB
Silva A
Weiss M
-
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
November 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
November 2022 List
URL Address
<a href="http://doi.org/10.1007/s00431-022-04566-w" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00431-022-04566-w</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
Achieving Child-Centred Care for Children and Young People with Life-Limiting and Life-Threatening Conditions-A Qualitative Interview Study
Publisher
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European Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Family/Psychology; Parents/Psychology; Adolescent; Child; Child Care; Children; End of Life Care; Humans; Normality; Paediatrics; Palliative Care; Qualitative Research; Social Support; Symptom Assessment
Creator
An entity primarily responsible for making the resource
Coombes L; Braybrook D; Roach A; Scott H; Harðardóttir D; Bristowe K; Ellis-Smith C; Bluebond-Langner M; Fraser LK; Downing J; Farsides B; Murtagh FEM; Harding R
Description
An account of the resource
This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children's hospices in the UK. Verbatim transcripts were analysed using framework analysis. A total of 106 participants were recruited: 26 children (5-17 years), 40 parents (of children 0-17 years), 13 siblings (5-17 years), 15 health and social care professionals, 12 commissioners. Participants described many inter-related symptoms, concerns, and care priorities impacting on all aspects of life. Burdensome symptoms included pain and seizures. Participants spoke of the emotional and social impacts of living with life-limiting conditions, such as being able to see friends, and accessing education and psychological support. Spiritual/existential concerns included the meaning of illness and planning for an uncertain future. Data revealed an overarching theme of pursuing 'normality', described as children's desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality. CONCLUSION: Children with life-limiting conditions and their families experience a wide range of inter-related symptoms, concerns, and care priorities. A holistic, child-centred approach to care is needed, allowing focus on pursuit of normal childhood activities. Improvements in accessibility, co-ordination, and availability of health services are required to achieve this. WHAT IS KNOWN: • Existing evidence regarding symptoms, concerns, and care priorities for children with life-limiting conditions is largely limited to proxy-reported data and those with a cancer diagnosis. • Child-centred care provision must be directed by children's perspectives on their priorities for care. WHAT IS NEW: • Social and educational activities are more important to children with life-limiting conditions than their medical concerns. • A holistic approach to care is required that extends beyond addressing medical needs, in order to support children with life-limiting conditions to focus on pursuit of normal childhood activities.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00431-022-04566-w" target="_blank" rel="noreferrer noopener">10.1007/s00431-022-04566-w</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).
Adolescent
Child
Child Care
End of Life Care
Paediatrics
Palliative Care
Qualitative Research
2022
Bluebond-Langner M
Braybrook D
Bristowe K
Children
Coombes L
Downing J
Ellis-Smith C
European Journal of Pediatrics
Family/psychology
Farsides B
Fraser LK
Harding R
Harðardóttir D
Humans
Murtagh FEM
Normality
November 2022 List
Parents/psychology
Roach A
Scott H
Social Support
Symptom Assessment
-
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
November 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
November 2022 List
URL Address
<a href="http://doi.org/10.1017/s1047951121003218" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/s1047951121003218</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
Parents' Decision-Making for their Foetus or Neonate with a Severe Congenital Heart Defect
Publisher
An entity responsible for making the resource available
Cardiology in the Young
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Adult; Child; Congenital; Decision-making; Female; Fetus; Heart Defects; Humans; Infant; Male; Newborn; Parents; Pregnancy; Psychology; Qualitative Research
Creator
An entity primarily responsible for making the resource
Delaney RK; Pinto NM; Ozanne EM; Brown H; Stark LA; Watt MH; Karasawa M; Patel A; Donofrio MT; Steltzer MM; Miller SG; Zickmund SL; Fagerlin A
Description
An account of the resource
BACKGROUND: Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or neonate face a complex and stressful decision between termination, palliative care, or surgery. Understanding how parents make this initial treatment decision is critical for developing interventions to improve counselling for these families. METHODS: We conducted focus groups in four academic medical centres across the United States of America with a purposive sample of parents who chose termination, palliative care, or surgery for their foetus or neonate diagnosed with severe CHD. RESULTS: Ten focus groups were conducted with 56 parents (M(age) = 34 years; 80% female; 89% White). Results were constructed around three domains: decision-making approaches; values and beliefs; and decision-making challenges. Parents discussed varying approaches to making the decision, ranging from relying on their "gut feeling" to desiring statistics and probabilities. Religious and spiritual beliefs often guided the decision to not terminate the pregnancy. Quality of life was an important consideration, including how each option would impact the child (e.g., pain or discomfort, cognitive and physical abilities) and their family (e.g., care for other children, marriage, and career). Parents reported inconsistent communication of options by clinicians and challenges related to time constraints for making a decision and difficulty in processing information when distressed. CONCLUSION: This study offers important insights that can be used to design interventions to improve decision support and family-centred care in clinical practice.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/s1047951121003218" target="_blank" rel="noreferrer noopener">10.1017/s1047951121003218</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).
Child
Female
Fetus
Infant
Male
Newborn
Parents
Qualitative Research
2022
Adult
Brown H
Cardiology In The Young
Congenital
Decision-making
Delaney RK
Donofrio MT
Fagerlin A
Heart Defects
Humans
Karasawa M
Miller SG
November 2022 List
Ozanne EM
Patel A
Pinto NM
Pregnancy
Psychology
Stark LA
Steltzer MM
Watt MH
Zickmund SL