1
40
4
-
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
October 2023 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
October List 2023
URL Address
<a href="http://doi.org/10.1186/s12904-023-01238-w" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01238-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
Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative study
Publisher
An entity responsible for making the resource available
BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Terminal Care; child; terminal care; article; female; human; male; palliative therapy; clinical article; education; child health care; awareness; qualitative research; funding; human experiment; semi structured interview; thematic analysis; organization; specialization
Creator
An entity primarily responsible for making the resource
Papworth A; Hackett J; Beresford B; Murtagh F; Weatherly H; Hinde S; Bedendo A; Walker G; Noyes J; Oddie S; Vasudevan C; Feltbower RG; Phillips B; Hain R; Subramanian G; Haynes A; Fraser LK
Description
An account of the resource
Background: Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative study aimed to explore regional perspectives of the successes, and challenges to the equitable coordination and delivery of end-of-life care for children in the UK. The study provides an overarching perspective on the challenges of delivering and coordinating end-of-life care for children in the UK, and the impact of these on health professionals and organisations. Previous research has not highlighted the successes in the sector, such as the formal and informal coordination of care between different services and sectors. Method(s): Semi-structured interviews with Chairs of the regional Palliative Care Networks across the UK. Chairs or co-Chairs (n = 19) of 15/16 Networks were interviewed between October-December 2021. Data were analysed using thematic analysis. Result(s): Three main themes were identified: one standalone theme ("Communication during end-of-life care"); and two overarching themes ("Getting end-of-life services and staff in the right place", with two themes: "Access to, and staffing of end-of-life care" and "Inconsistent and insufficient funding for end-of-life care services"; and "Linking up healthcare provision", with three sub-themes: "Coordination successes", "Role of the networks", and "Coordination challenges"). Good end-of-life care was facilitated through collaborative and network approaches to service provision, and effective communication with families. The implementation of 24/7 advice lines and the formalisation of joint-working arrangements were highlighted as a way to address the current challenges in the specialism. Conclusion(s): Findings demonstrate how informal and formal relationships between organisations and individuals, enabled early communication with families, and collaborative working with specialist services. Formalising these could increase knowledge and awareness of end of life care, improve staff confidence, and overall improve professionals' experiences of delivering care, and families' experiences of receiving it. There are considerable positives that come from collaborative working between different organisations and sectors, and care could be improved if these approaches are funded and formalised. There needs to be consistent funding for paediatric palliative care and there is a clear need for education and training to improve staff knowledge and confidence.Copyright © 2023, BioMed Central Ltd., part of Springer Nature.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-023-01238-w" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01238-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).
2023
Article
Awareness
Bedendo A
Beresford B
BMC Palliative Care
Child
Child Health Care
Clinical Article
Education
Feltbower RG
Female
Fraser LK
Funding
Hackett J
Hain R
Haynes A
Hinde S
Human
Human Experiment
Male
Murtagh F
Noyes J
October List 2040
Oddie S
Organization
Palliative Therapy
Papworth A
Phillips B
Qualitative Research
Semi Structured Interview
Specialization
Subramanian G
Terminal Care
Thematic Analysis
Vasudevan C
Walker G
Weatherly H
-
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 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000537861.99545.54" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537861.99545.54</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
Bereavement follow-up: Listening and learning
Publisher
An entity responsible for making the resource available
Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
bereavement;follow up;learning;Child;clinical article;conference abstract;consultation;diagnosis;Female;genetic transcription;Human;intensivist;Male;memory;nurse;staff;terminal care
Creator
An entity primarily responsible for making the resource
Subramanian G;Consterdine K;Ryan C
Description
An account of the resource
Aims & Objectives: Providing family focussed care through lessons learned from bereavement follow-up. Methods RMCH is a tertiary PICU in UK with 750 admissions annually. Families of all patients who die in PICU are offered bereavement follow-up at 6-8 weeks. The meeting is attended by the parents, consultant intensivist and a family liaison nurse (recently appointed). As a service improvement project, these meetings have been routinely observed by a senior staff member using shadowing techniques (April 2017 onwards). Transcripts are recorded in a pre-designed field journal. Team debrief is held following meetings to identify recurrent themes to guide service improvement. Results 25 patients died between January-November 2017. 6 families attended bereavement follow-up. Families who attended had unanswered questions around care (pre-hospital/hospital) or were waiting to get the final postmortem /genetic test results. Two families declined as they were "happy with the care", three are awaiting follow-up dates and the remaining did not reply. To improve quality of discussions, team realised that prior interaction with parents to identify their objectives from the meeting is essential. Recurrent themes that emerged from shadowing technique included feedback around care (pre-hospital / in the hospital), communication gaps (during transfer of care, what to expect upon PICU admission, what happens after a child dies), making memories and wanting to know pending test results. Conclusions Families who have unanswered questions around care or diagnosis, tend to attend bereavement follow up. Shadowing technique has revealed what families want from end of life care and has helped to shape improvement in our service.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.pcc.0000537861.99545.54" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537861.99545.54</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).
2018
Bereavement
Child
Clinical Article
conference abstract
Consterdine K
Consultation
Diagnosis
Female
Follow Up
genetic transcription
Human
Intensivist
Learning
Male
Memory
November 2018 List
Nurse
Pediatric Critical Care Medicine
Ryan C
Staff
Subramanian G
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
November 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000537862.99545.8f" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537862.99545.8f</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
Changing times-PICU and palliative care
Publisher
An entity responsible for making the resource available
Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Palliative therapy;Adult;amber;awareness;conference abstract;controlled study;Education;Female;Human;Male;Multidisciplinary team;oncology;patient information;prospective study;staff;work
Creator
An entity primarily responsible for making the resource
Subramanian G;Kauffmann L
Description
An account of the resource
Aims & Objectives: To identify patients admitted to PICU who might benefit from palliative care using the Spectrum of Children's Palliative Care Needs. Methods Prospective study between July 2016-December2017. Cases admitted to the PICU were assessed on the spectrum for palliative care needs every Wednesday using the surprise question: Would you be surprised if the child was still alive in the next few days to weeks (RED), would you be surprised if the child died in the next months or years (AMBER), would you be surprised if the child died of their condition in childhood (YELLOW), would you be surprised if the child died early of this condition but lived until adulthood (GREEN). Acute admissions (<10days admission with no previous history), Oncology patients, and those greater than 16 years were excluded. Up to date patient information was discussed in a multi-disciplinary team setting. Results Data from 53 MDTs over 78 weeks was analysed in study period with at least 2 meetings every month. 58% of the patients admitted to PICU would have benefitted from palliative care with 39% of these being in the amber group. Conclusions There is a large population of patients admitted to PICU who would benefit from palliative care. Staff awareness, education and support to care for this complex group of patients through changes in recruitment strategies and job descriptions, staff psychological support, in house palliative care consultant availability and development of family liaison roles is essential.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.pcc.0000537862.99545.8f" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537862.99545.8f</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).
2018
Adult
amber
Awareness
conference abstract
Controlled Study
Education
Female
Human
Kauffmann L
Male
Multidisciplinary team
November 2018 List
Oncology
Palliative Therapy
patient information
Pediatric Critical Care Medicine
Prospective Study
Staff
Subramanian G
Work
-
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 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000537863.07170.4e" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537863.07170.4e</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
Improving communication within multi-disciplinary teams in children with life limiting conditions
Publisher
An entity responsible for making the resource available
Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Multidisciplinary team;Child;conference abstract;constitutive androstane receptor;death;endogenous compound;Human;intensivist;nurse;Palliative therapy;patient referral
Creator
An entity primarily responsible for making the resource
Subramanian G;Consterdine K;Kauffmann L
Description
An account of the resource
Aims & Objectives: 60% of children admitted to RMCH PICU might benefit from palliative care (previous case review). Co-coordinating and maintaining continuity of care in these children with multi-speciality input is challenging. Weekly Multi disciplinary Team Meeting (MDT) and follow up was introduced in PICU to improve care in this cohort. Methods Weekly MDT meeting (co-located specialist teams, Intensivists, palliative care consultant, family liaison nurses) were held over a year. Spectrum of Palliative Care Needs was used to 1. Recognise children who might benefit from palliative care 2. Identify need for MDT/Lead consultant/End of life discussions if not already done 3. Update community and specialist teams 4. Discuss/Review advanced care plan (ACP). Results Actions from 32 MDTs were analysed (minimum 2 meetings monthly) in children with palliative care needs (62%). Actions that had to take place within the hospital were completed: Liaising with specialist nurses: 7; Initiating ACP: 4; Identifying ICU lead: 16; Recognising need for end of life discussions, planning for death and place of death: 14; referral to in-house palliative care team: 17; Organising MDT: 11. However only 44% of local teams (outside hospital) were contacted (action that involved teams outside the hospital) and feedback from local teams after discharge was inconsistent. Conclusions Weekly MDT meetings to identify children who might benefit from palliative care are a good start to improving communication and maintaining continuity of care. More initiatives need to be taken by the intensivists in speciality hospitals to improve communication with the wider network of professionals looking after children with life limiting conditions.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.pcc.0000537863.07170.4e" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537863.07170.4e</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).
2018
Child
conference abstract
Consterdine K
constitutive androstane receptor
Death
Endogenous Compound
Human
Intensivist
Kauffmann L
Multidisciplinary team
November 2018 List
Nurse
Palliative Therapy
Patient Referral
Pediatric Critical Care Medicine
Subramanian G