1
40
134
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April 2024 List
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April List 2024
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<a href="http://doi.org/10.1136/archdischild-2017-314414" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2017-314414</a>
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When paediatricians and families can't agree
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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child; human; ethics; preschool child; terminal care; United Kingdom; medical ethics; treatment outcome; infant; conflict; treatment withdrawal; child health care; experimental therapy
Creator
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Wallis C
Description
An account of the resource
Recent high-profile cases have highlighted the difficulties that professionals caring for terminally ill or technology dependent children face. I am a paediatrician. I see children with severe problems, often chronic and frequently without a cure, and I try as far as possible to help them and their families. Occasionally there is science and evidence behind the decisions we make, but not always. Medicine does have its black and white disciplines—it is either cancer or it isn’t; or you either need to have an operation or you don’t. But paediatrics is often a discipline of uncertainty dealing with many shades of grey. Paediatricians learn to live with uncertainty and similarly have to support parents and young people to accept this uncertainty. Sometimes we have to wait for nature to reveal itself or for the future to unfold as it should. Herein lies the art of paediatrics: the ability to watch and wait, intervening in a timely fashion when required to do so and recognising the sad eventuality of having to let go of life at times. This is our craft: to do what is in the child’s best interests and use therapies that will help with life’s quality but not unnecessarily prolong inevitable death. However there are competing interests in this delicate balance in doing what is right for the child. Juggling our way along the best route required in reaching the best outcome for the child makes my opening paragraphs easier said than done. First there is medical technology, what we can do, with advances developing at a breakneck speed. Home ventilation, home total parenteral nutrition, home dialysis and transplants are all now commonplace and can sustain life in children in whom death would otherwise have been inevitable. Gene editing and small molecule therapies have the potential to change the …
Identifier
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<a href="http://doi.org/10.1136/archdischild-2017-314414" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-314414</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).
2018
April List 2024
Archives of Disease in Childhood
Child
Child Health Care
Conflict
Ethics
Experimental Therapy
Human
Infant
Medical Ethics
Preschool Child
Terminal Care
Treatment Outcome
Treatment Withdrawal
United Kingdom
Wallis C
-
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February 2024 List
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February List 2024
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<a href="http://doi.org/10.1136/archdischild-2023-325810" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-325810</a>
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Importance of parental involvement in paediatric palliative care in Hong Kong: Qualitative case study
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; diagnosis; article; female; human; male; social support; palliative therapy; Internet; interview; medical information; physician; health care personnel; therapy; caregiver; semi structured interview; case study; nurse; child health; Hong Kong
Creator
An entity primarily responsible for making the resource
Wong FKY; Ho JMC; Lai TC; Lee LPY; Ho EKY; Lee SWY; Chan SCW; Fung CW; Ho ACH; Li CH; Li CK; Chiu ATG; Tsui KW; Lam KKW
Description
An account of the resource
Objective: To compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers. Design: A qualitative case study method using semistructured interviews was employed with a within-case and across-case analysis. Themes and subthemes emerging from the cases were compared and contrasted in the across-case analysis to explore the similarities and variations in participant perceptions. Setting/participants: The setting was the paediatric departments of five regional hospitals in Hong Kong. Twenty-five sets of informants (CLLC-parent-healthcare provider) were recruited, with 65 individual interviews conducted. Results: A total of 3784 units of analysis were identified, resulting in three themes with subthemes. 'Living with the disease' (55.8%) occupied the largest proportion, followed by 'information and understanding about the disease' (27.4%), and 'care support and palliative care' (16.8%). Healthcare provider support mainly focused on physical concerns. Family and social support were present, but carer stress created tension between couples. Doctors were the primary source of medical information, but the parents had to seek further information via the internet and support from patient groups. There was a perceived need for better coordination and collaboration of care. The palliative care approach coordinated by nurses was seen as helpful in addressing the care needs of the CLLC.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2023-325810" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-325810</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).
2023
Archives of Disease in Childhood
Article
Caregiver
Case Study
Chan SCW
Child
Child Health
Chiu ATG
Diagnosis
February List 2024
Female
Fung CW
Health Care Personnel
Ho ACH
Ho EKY
Ho JMC
Hong Kong
Human
Internet
Interview
Lai TC
Lam KKW
Lee LPY
Lee SWY
Li CH
Li CK
Male
Medical Information
Nurse
Palliative Therapy
Physician
Semi Structured Interview
Social Support
Therapy
Tsui KW
Wong FKY
-
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Title
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.53" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.53</a>
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An innovative hybrid palliative care fellowship program: empowering pediatricians and enhancing care for children in resource-limited settings
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Canada; Palliative Care; pediatrics; Bangladesh; controlled study; female; human; major clinical study; male; child health; palliative therapy; total quality management; India; pediatrician; skill; clinical examination; conference abstract; Philippines; learning; rotation; leadership; teaching; rigor; career; mentor; running; resource limited setting; Southeast Asia
Creator
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Palat G; Doherty M; Brown S; Shah A
Description
An account of the resource
Objective To describe the development and implementation of a 1-year 'Hybrid' Pediatric Palliative Care (PPC) Fellowship, which includes both clinical and online learning to train paediatricians as specialists and leaders in paediatric palliative care in South and Southeast Asia. Methods Globally, 97% of children needing palliative care (PC) live in low- or middle-income countries, where access is often very limited. In India, less than 1% of the 1.6 million children needing PC can access these services. Building capacity and training opportunities for paediatricians are essential to improve access to PC in these settings. The Hybrid fellowship was developed through the existing partnership between Two Worlds Cancer Collaboration, Canada and the Hyderabad Centre for Palliative Care to train paediatricians as specialists and leaders in paediatric palliative care in South and Southeast Asia. A team of PPC experts developed the fellowship after a rigorous review of relevant literature and educational materials, incorporating their experiences running PPC traditional (in-person) fellowship programs in both high and lowerresourced settings. Results The fellowship includes formal teaching, clinical rotations, mentorship, regular assessments of trainees, and a scholarly project. Teaching includes 100 hours of weekly online classes, with a focus on case-based learning and leadership skills. Mandatory 4 months of clinical rotations in PC includes 2 months in the regional centre of PPC excellence in Hyderabad, India. Trainees' progression towards program competencies is assessed through written and observed standardised clinical examinations. A mentorship program provides additional support, which continues beyond the fellowship through an early career mentorship group. As a part of research and quality improvement (QI) training, fellows complete a scholarly project with support and supervision from experienced research mentors. More than 30 regional and international PPC experts contribute to the program as faculty. Since 2021, 6 paediatricians have completed the 'Hybrid' fellowship, from India (2), Bangladesh (1), and the Philippines (3), with 3 fellows currently in training. Graduated fellows have become regional and national leaders in PPC, developing new PPC programs, and implementing new PPC training in their home country. The program successfully sought endorsement from the Royal College of Paediatrics and Child Health (UK), which has strengthened the program's rigor and quality. Conclusion A 1-year Hybrid PPC Fellowship, which trains pediatricians to become specialists and champions of PPC, is an innovative model that can successfully build PPC capacity in resource-limited settings and increase access to PPC for children with life-limiting illnesses.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2023-rcpch.53" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.53</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).
2023
2023 SE5 - Low Resource Setting
Archives of Disease in Childhood
Bangladesh
Brown S
Canada
career
Child
Child Health
clinical examination
conference abstract
Controlled Study
Doherty M
Female
Human
India
Leadership
Learning
Major Clinical Study
Male
mentor
Palat G
Palliative Care
Palliative Therapy
Pediatrician
Pediatrics
Philippines
resource limited setting
rigor
Rotation
running
Shah A
Skill
Southeast Asia
Teaching
Total Quality Management
-
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Title
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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/10.1136/archdischild-2023-rcpch.51" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.51</a>
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Enhanced symptom management clinicparental evaluation. Does it help?
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; hospital admission; human; pain; seizure; bodily secretions; dystonia; questionnaire; conference abstract; teleconsultation; thorax; access to information; running; video consultation
Creator
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Thompson S; Roe L
Description
An account of the resource
Objectives Questionnaire evaluation of a newly developed Enhanced Symptom Management clinic held at the local children's hospice to support children and young people (CYP) with life limiting (LLC) and life threatening conditions (LTC). Methods A paper questionnaire was sent to all families who were attending the enhanced symptom management clinic and were still alive. This was followed up by a QR link for those who hadn't responded to the original paper questionnaire. A shorter questionnaire was sent to health care professionals involved with the care of these CYP for their opinion as well. Results The number of times the CYP/family had attended the clinic varied from 1- 6 times with a combination of face to face, video consultation and telephone consultation. Has the clinic helped in the management of your child/ young person's symptoms? Responses were very helpful or helpful. The common themes around what was helpful or useful with regards to attendance at the symptom clinic related to: * Emergency planning to help avoid hospital admission for symptoms including- pain, secretions, dystonia, feed intolerance, seizures, chest management * Holistic planning * Symptom plan development to make emergency hospital admissions more straight forward * Clarity around medications - what and when to give * Families felt listened to and supported by the clinician's delivering the clinic Conclusion The enhanced symptom management clinic has been running since November 2020 and has provided a different environment to help support and manage these complex CYP. Families feel confident in how to manage their children more at home and have permission to alter medications if required depending on what their child's symptoms are like. Utilising video and telephone consultations has also enabled families' access to their clinician without the challenges involved with getting a complex needs child out of the house to a hospital. Ward doctors in training have ready access to information on how to manage these complex patients when they come in unwell, making emergency admissions less stressful for them and the families. Symptom plans continue to evolve and now also include some information about what the CYP is like when they are well and how they would usually communicate. These clinics aren't there to take the place of their specialist, but to help with care coordination and provide an holistic overview of what the child is experiencing symptom wise in addition to more specialist palliative symptom management.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2023-rcpch.51" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.51</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).
2023
Access To Information
Archives of Disease in Childhood
bodily secretions
Child
conference abstract
Dystonia
Hospital Admission
Human
October List 2033
Pain
Questionnaire
Roe L
running
Seizure
teleconsultation
Thompson S
Thorax
video consultation
-
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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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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/10.1136/archdischild-2023-rcpch.54" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.54</a>
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Title
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Use Of Buccal Fentanyl As A Breakthrough Opioid For Symptom Management In Patients Receiving Palliative Care
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Palliative Care; child; female; human; male; retrospective study; pain; palliative therapy; hospice; clinical article; neurologic disease; Fentanyl; opiate; dyspnea; adolescent; case study; conference abstract; drug therapy; fentanyl; absence of side effects; buccal drug administration; drug megadose; maximum permissible dose; mouth cavity
Creator
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Taylor N; Woods S; Hills M; Hain R; Box D
Description
An account of the resource
Objectives Using transmucosal fentanyl as an opioid for rapid acting, needle-free breakthrough relief of symptoms is established within paediatric palliative medicine.1 2 Medication administration via the buccal route is commonly used in paediatric palliative medicine, especially towards the end of life. It does not rely on enteral absorption; it is generally well tolerated, and parents/carers can be taught to administer medication via this route. Buccal administration of fentanyl is possible3 4 but infrequently used as dosing guidance is not readily available including within the APPM formulary.2 Methods We performed a multi-centre retrospective case review of patients using buccal fentanyl under supervision of tertiary specialist palliative care teams (SPCTs). Information was gathered on patient age, diagnosis, symptoms (pain, dyspnoea), weight, starting doses, dose escalation, maximum doses, other symptom medications, setting in which patient was cared for, any administration difficulties and adverse effects. Results Buccal fentanyl (IV solution administered into the buccal cavity) was used in the management of 9 patients under the two SPCTs, with problems across the paediatric palliative care spectrum including those with severe neurological impairment and oncology diagnoses. Patients were aged 5 weeks to 17yrs 11 months with weights ranging from 4kg to 61.3kg (mean = 24.4kg). Fentanyl was used to manage pain and dyspnoea in 6 patients, dyspnoea in two, and pain in one. Starting doses for dyspnoea ranged from 0.4micrograms/kg to 0.9micrograms/kg (mean = 0.7micrograms/kg) and for pain ranged from 0.4micrograms/kg to 1.5micrograms/kg (mean = 0.9 micrograms/kg). Three patients required dose escalation as part of their ongoing management with the highest dose required 20 micrograms/kg. Six patients were opioid naive at the time of starting fentanyl. Patients were cared for across community, hospice and hospital settings. No adverse effects were encountered. Administration difficulties occurred for one patient on high-dose fentanyl due to the large volume of the IV solution required for buccal administration (200 micrograms = 4mls). Conclusions The use of buccal fentanyl for breakthrough opioid medication as part of a palliative care symptom plan appears a safe and effective method of delivering fast-acting symptom relief which is well tolerated by patients and acceptable to families. This case series has demonstrated safe and effective starting doses for pain and dyspnoea management. for patients requiring higher doses the large volume of IV solution required for buccal administration may mean alternative preparations for trans-mucosal fentanyl administration become more practical.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2023-rcpch.54" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.54</a>
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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
absence of side effects
Adolescent
Archives of Disease in Childhood
Box D
buccal drug administration
Case Study
Child
Clinical Article
conference abstract
drug megadose
Drug Therapy
Dyspnea
Female
Fentanyl
Hain R
Hills M
Hospice
Human
Male
maximum permissible dose
mouth cavity
Neurologic Disease
October List 2032
Opiate
Pain
Palliative Care
Palliative Therapy
Retrospective Study
Taylor N
Woods S
-
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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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/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.50</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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Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Palliative Care; child; controlled study; female; human; male; retrospective study; quality of life; palliative therapy; hospice; practice guideline; follow up; outcome assessment; artificial ventilation; clinical article; patient referral; education; consultation; pediatric intensive care unit; awareness; diagnosis; life sustaining treatment; hospital discharge; adolescent; surgery; infant; demographics; conference abstract; e-mail; decision making; trust; length of stay; nurse; writing; community care; heart graft; nursing staff; clinical nurse specialist; apparent life threatening event; organizational restructuring; oxygenation
Creator
An entity primarily responsible for making the resource
Subhash S; Freitas D; Aidoo E; Nkulu G; Chan-Dominy A
Description
An account of the resource
Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus wishes of the child and family on preferred place of care.2 3 We evaluated the temporal effect on PC referrals at a quarternary cardiorespiratory paediatric intensive care unit (PICU) following organisational restructuring to integrate people-centred changes amidst complex diagnoses and advanced life-sustaining treatments. Methods Retrospective review of PC referral database between January and December 2022 was conducted, analysed on referral pathway, reviewed with decision-making process, patient demographics and outcome. Results The nurse-led service with ad hoc informal visits to offer PC support following requests from medical team was reorganised since service-level agreement for paediatric PC consultant attendance at our weekly complex care multidisciplinary meetings. Departmental education sessions and trust governance events were platforms to promote staff awareness on service and enhance referral pathway. PC referrals were made for 23 children(M:F 1.3:1), median age 13.8 months (range 10days -16.8years), under categories of life-limiting diagnoses (n=12, 52%) or acute life-threatening events (n=11, 48%), including resuscitative extracorporealmembrane-oxygenation.(Graph 1) Median time from admission to PC referral was 59 days (range 6-162) prior to standardised referral proforma in May2022, this reduced to 36 days (range -35 to 68) and 6 days (range 3-30) per 4-month period. One referral was made 5 weeks prior to an international repatriation for child with life-limiting diagnosis on long-term ventilation. Completed referral forms sent to a designated email address were passed onto PC consultants and clinical nurse specialist. Dedicated weekly PC days provided introductory 'meet-andgreet', follow-up 'check-in' or semi-structured meeting with PC team members for patients, families and staff. PC-led multidisciplinary meetings (including 2 online) were followed by real-time correspondence to medical and nursing staff with feedback, recommendations and action plan. 4 advanced care plans and 3 symptom management plans were completed; 9 hospice and 5 community care nursing team referrals were made whilst 2 families declined hospice. Median hospital length of stay was 69 days (range 6-390). 5 children survived to hospital discharge (3 died at home), and 8 are still in hospital (1 as heart transplant recipient). Conclusion Integrative culture during reorganisation can positively influence paediatric PC referrals. Event-triggered and diagnosis-based cues may help foster PC participation as continuing strategy to respond with support during disease, treatment and psychosocial burden for children and families.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.50</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).
2023
Adolescent
Aidoo E
apparent life threatening event
Archives of Disease in Childhood
Artificial Ventilation
Awareness
Chan-Dominy A
Child
Clinical Article
Clinical Nurse Specialist
community care
conference abstract
Consultation
Controlled Study
Decision Making
Demographics
Diagnosis
E-mail
Education
Female
Follow Up
Freitas D
heart graft
Hospice
hospital discharge
Human
Infant
Length Of Stay
Life Sustaining Treatment
Male
Nkulu G
Nurse
Nursing Staff
October List 2031
organizational restructuring
outcome assessment
Oxygenation
Palliative Care
Palliative Therapy
Patient Referral
Pediatric Intensive Care Unit
Practice Guideline
Quality Of Life
Retrospective Study
Subhash S
Surgery
Trust
writing
-
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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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/10.1136/archdischild-2023-rcpch.52" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.52</a>
Dublin Core
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Title
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An Audit Analysing The Standard Of Patient Care And Service Provision In Sppc At A Tertiary Hospital And Hospice
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; female; human; male; palliative therapy; clinical article; Hospices; patient referral; conference abstract; place of death; hospice care; patient coding; staff training; tertiary care center; sample size; manager; patient care
Creator
An entity primarily responsible for making the resource
Durrant E; Warlow T; Coulson-Smith P; Renton K
Description
An account of the resource
Objectives To identify gaps in SPPC provision at a patient and service level at the tertiary centre, local children's hospice and the region, compared to national frameworks and standards. Specialist paediatric palliative care (SPPC) aims to improve quality of life for children with life-limiting and life-threatening conditions. SPPC services were introduced at a tertiary hospital in 2012 and are in their infancy. As an underdeveloped speciality, there are gaps in provision across the region and little research has been carried out to identify them. Methods The last 15 children and young people (CYP) who died and were referred to tertiary SPPC services from the region were identified. Patient data were collected using hospital and hospice care databases and discussions with staff involved in patient care. Service provision data were collected by discussions with service managers. Results Only 80% of children and young people (CYP) had an Advance Care Plan (ACP). Of the CYP who required rapid transfer, none had a documented plan in an ACP. Preferred place of death was achieved in 67% of CYP. The average time from referral to SPPC to death was 38 days. Of the staff training standards, 80% were met at the tertiary centre and 91% at children's hospice. 73% of protocol standards were met by tertiary centre and 91% by the children's hospice. 56% of provision standards were met by tertiary centre and 69% by the children's hospice. 50% of the staffing standards were met at both services. Neither service met any of the data management and service improvement standards. Conclusion These data showed no major gaps in patient care standards, although improvement is needed to ensure all CYP have ACPs. Major gaps were identified in service improvement and data management in comparison to national standards. Providing a 24-hour SPPC service and improving data collection could address this. A limitation of this audit is the small sample size.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2023-rcpch.52" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.52</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).
2023
Archives of Disease in Childhood
Child
Clinical Article
conference abstract
Coulson-Smith P
Durrant E
Female
Hospice Care
Hospices
Human
Male
manager
October List 2030
Palliative Therapy
Patient Care
patient coding
Patient Referral
Place Of Death
Renton K
Sample Size
staff training
tertiary care center
Warlow T
-
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October 2023 List
Text
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October List 2023
URL Address
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.517" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.517</a>
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What constitutes 'good quality care' from the perspectives of children and young people with life-limiting and life-threatening conditions?
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Archives of Disease in Childhood
Date
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2023
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Child; child; female; human; male; outpatient; preschool child; clinical article; Only Child; hospital patient; nervous system; malignant neoplasm; developmental stage; adolescent; conference abstract; semi structured interview; conversation; genetic transcription; social care
Creator
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Braybrook D; Coombes L; Scott HM; Haroardottir D; Bristowe K; Fraser L; Harding R
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Objectives Children with life-limiting and life-threatening conditions (LLLTC) have complex needs and are high users of health and social care. Several quality standards exist that highlight the importance of addressing the needs and wishes of children and young people (CYP) with LLLTC in paediatric palliative care. However there is limited evidence about what children themselves think is important. The aim of this study is to consider what constitutes good quality care from the perspectives of CYP with LLLTC. Methods Nine UK inpatient and outpatient settings supported recruitment of CYP aged 5-17 with LLLTC to participate in qualitative semi-structured interviews. Care quality was coded within a larger framework analysis. Analysis of verbatim transcripts was supported by NVivo. Results 26 children and young people with a range of LLLTCs (10 gastrointestinal, 6 cancer, 5 neurological, 3 congenital, 1 metabolic, 1 respiratory) were interviewed. Three domains of quality care were identified: 1) good communication with the health and social care professionals that care for CYP; 2) being enabled to be a CYP during their care; and 3) how professionals can best alleviate their symptoms and concerns. Children and young people spoke about the significance of being cared for attentively, by professionals that they know and who make an effort to know them. They want symptom relief in comfortable settings tailored to their needs and interests. It was important to facilitate activities that are appropriate to their cognitive age. CYP also value being included in conversations about their care in an appropriate way. When health and social care professionals ask CYP about things that are important to them it demonstrates that they care. Conclusion Children and young people with life-limiting and life-threatening conditions have unique and important views about what they want from their care. CYP appreciate professionals making an effort to know them in a way that is appropriate to their developmental stage, and explicit opportunities to be part of communication about their care. Quality care must be informed by CYP views, including those with serious, complex illness. Our study has demonstrated that they can provide useful and specific input. Experiential data on quality of care should be collected alongside outcome data.
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<a href="http://doi.org/10.1136/archdischild-2023-rcpch.517" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.517</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).
2023
Adolescent
Archives of Disease in Childhood
Braybrook D
Bristowe K
Child
Clinical Article
conference abstract
Conversation
Coombes L
developmental stage
Female
Fraser L
genetic transcription
Harding R
Haroardottir D
Hospital Patient
Human
Male
Malignant Neoplasm
Nervous System
October List 2029
Only Child
Outpatient
Preschool Child
Scott HM
Semi Structured Interview
Social Care
-
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Title
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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.
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October List 2023
URL Address
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.55" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.55</a>
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A One Day Paediatric Palliative Care Study Day Improves Skills
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Archives of Disease in Childhood
Date
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2023
Subject
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Palliative Care; child; controlled study; female; human; male; advance care planning; ethics; palliative therapy; clinical article; consultation; human experiment; questionnaire; conference abstract; skill; learning; appetite
Creator
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Aidoo E
Description
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Objectives To see if a network Palliative Care Study day increases knowledge of participants. Method This was the first paediatric palliative care network study day run in the region. 20 doctors (both consultants and those in training) participated. The day was a mixture of presentations and in depth work shops covering advance care planning discussions (with actors); symptom management and discussion of ethical and legal principles underpinning palliative care. The course was run face to face. A pre-course questionnaire was sent out online to applicants to gain an understanding of their prior knowledge and their learning objectives. Post course feedback was obtained via paper questionnaire at the end of the study day. Results Participants ranked their pre-course knowledge of Advance Care Planning; End of life processes; Symptom Management; Ethics in palliative care as 3/5 (mode and median, n=19) and post course as 4 (mode and median, n=16). 100% of respondents would recommend this course to a colleague and 100% felt the course met the objectives. Feedback on how to improve identified an appetite for clinicians to have more practice in discussing advance care planning with families. Conclusion Feedback identified clinicians (both those in training and consultants) do not feel equipped to start advance care planning discussions, manage symptoms or know what to do when a child dies. Our study day demonstrated a gain in these skills.
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<a href="http://doi.org/10.1136/archdischild-2023-rcpch.55" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.55</a>
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2023
Advance Care Planning
Aidoo E
Appetite
Archives of Disease in Childhood
Child
Clinical Article
conference abstract
Consultation
Controlled Study
Ethics
Female
Human
Human Experiment
Learning
Male
October List 2028
Palliative Care
Palliative Therapy
Questionnaire
Skill
-
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Title
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September 2023 List
Text
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September List 2023
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<a href="http://doi.org/10.1136/archdischild-2023-325481" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-325481</a>
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External second opinions: building trust between health professionals and families
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Archives of Disease in Childhood
Date
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2023
Subject
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Paediatrics; Referral and Consultation; Intensive Care Units, Paediatric
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Fraser J; Goold I; Akindolie O; Linney M
Description
An account of the resource
In medicine, external second opinions are frequently sought to inform decisions around a patient's proposed course of treatment. However, they are also sought in more challenging circumstances such as when disagreement arises between the healthcare team and the family, or during complex end-of-life discussions in critically ill children. When done well, external second opinions can help build trust and reduce conflict. However, when done poorly they may antagonise relationships and thwart attempts to bring about consensus. While principles of good medical practice should always be followed, the actual second opinion process itself remains essentially unregulated in all its forms. In this review, we set out what a standardised and transparent second opinion process should look like and recommend key recommendations for healthcare Trusts, Commissioners and professional bodies to support good practice.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2023-325481" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-325481</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).
2023
Akindolie O
Archives of Disease in Childhood
Fraser J
Goold I
Intensive Care Units, Paediatric
Linney M
Paediatrics
Referral And Consultation
September List 2036
-
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September 2023 List
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Citation List Month
September List 2023
URL Address
<a href="http://doi.org/10.1136/archdischild-2018-315560" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2018-315560</a>
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Organ donation after euthanasia in children: Belgian and Dutch perspectives
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Archives of Disease in Childhood
Date
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2019
Subject
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Child; child; article; human; palliative therapy; Only Child; ethics; intensive care; euthanasia; organ donor; pediatric surgery
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Bollen JAM; Ten Hoopen R; Van Der Hoeven MAHBM; Shaw D; Brierley J; Ysebaert D; Van Heurn LWE; Van Mook WNKA
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An account of the resource
Organ donation after euthanasia has been performed more than 70 times in Belgium and the Netherlands combined (personal communication, Jan Bollen, 2018). These two countries allow for euthanasia in minors as well, while Luxembourg, Colombia and Canada only allow adults to undergo euthanasia. A Dutch guideline on organ donation after euthanasia focuses on mentally competent adults, with a predominance of neurodegenerative diseases.1 The question arises whether organ donation after euthanasia should be possible in children and adolescents, and what are the legal, medical and ethical conditions for the combined procedure.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2018-315560" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2018-315560</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).
2019
Archives of Disease in Childhood
Article
Bollen JAM
Brierley J
Child
Ethics
Euthanasia
Human
Intensive Care
Only Child
organ donor
Palliative Therapy
pediatric surgery
September List 2025
Shaw D
Ten Hoopen R
Van Der Hoeven MAHBM
Van Heurn LWE
Van Mook WNKA
Ysebaert D
-
Dublin Core
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Title
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July 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
July List 2023
URL Address
<a href="http://doi.org/10.1136/archdischild-2022-324963" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2022-324963</a>
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Navigating two 'truths': a qualitative study of physician-led end-of-life decision-making for children with life-limiting conditions
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Archives of Disease in Childhood
Date
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2023
Subject
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Child; Decision Making; ethics; intensive care units paediatric; Only Child; paediatrics; palliative care; qualitative research
Creator
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Vemuri S; Hynson J; Williams K; Gillam L
Description
An account of the resource
OBJECTIVE: To describe how paediatricians undertake the process of end-of-life decision-making for a child with a life-limiting condition who is unable to participate in decision-making for themselves. DESIGN: A qualitative phenomenological study using semistructured interviews based around a clinical vignette matched to the clinical practice of individual paediatricians. Verbatim transcripts underwent thematic analysis. SETTING: Paediatricians practising in Victoria (Australia) between mid-2019 and mid-2020. PARTICIPANTS: Twenty-five purposively sampled paediatricians caring for children with specific life-limiting conditions: children with severe neurodisability, oncological or haematological malignancies or complex cardiac disease in an inpatient intensive care or outpatient clinic setting. RESULTS: A process of physician-led end-of-life decision-making was described. Paediatricians first contemplate that the child's death is approaching, then prepare themselves by ensuring there are no reversible factors at play. They then inform parents of this view and, if needed, hold discordant views between parents and themselves about the child's death in a 'fruitful tension'. Ultimately, they seek to bring parents' views of their child in line with theirs to facilitate goal alignment. CONCLUSIONS: Paediatricians feel responsible for facilitating the alignment of parental understanding of the child's health status with their own. This is achieved either through direction or by holding differences between parental and medical truths about the child's health in tension to provide time, space, and clarity. This alignment was seen as key to enabling end-of-life treatment decisions, without which conflict in end-of-life decision-making can arise or persist.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2022-324963" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2022-324963</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).
2023
Archives of Disease in Childhood
Child
Decision Making
Ethics
Gillam L
Hynson J
intensive care units paediatric
July List 2023
Only Child
Paediatrics
Palliative Care
Qualitative Research
Vemuri S
Williams K
-
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Title
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May 2023 List
Text
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Citation List Month
May List 2023
URL Address
<a href="http://doi.org/10.1136/archdischild-2022-325157" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2022-325157</a>
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Data-driven approach to understanding neonatal palliative care needs in England and Wales: a population-based study 2015-2020
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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England; neonatology; palliative therapy; Wales; article; England; female; human; infant; Infant Newborn; long term survival; major clinical study; male; morbidity; newborn; newborn care; Palliative Care; perinatal care; Wales
Creator
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Harnden F; Lanoue J; Modi N; Uthaya SN; Battersby C
Description
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Abstract Objective To quantify admissions to neonatal units in England and Wales with potential need for palliative care. Design, setting and patients Diagnoses and clinical attributes indicating a high likelihood of requiring palliative care were mapped to categories within the British Association of Perinatal Medicine’s (BAPM) framework on palliative care. We extracted data from the National Neonatal Research Database on all babies born and admitted to neonatal units in England and Wales 2015–2020. Outcomes The number and proportion of babies meeting BAPM categories, their discharge outcomes and the characteristics of babies who died during neonatal care but did not fulfil any BAPM category. Results 12 123/574 954 (2.1%) babies met one or more BAPM category: 6239/12 123 (51%) conformed to BAPM category 4 (postnatal conditions with high risk of severe impairment), 3796 (31%) to category 2 (antenatal/postnatal diagnosis with high risk of significant morbidity or death), 1399 (12%) to category 3 (born at margin of viability) and 288 (2%) to category 1 (antenatal/postnatal diagnosis not compatible with long-term survival); 401 babies (3%) met criteria for multiple categories. 6814/12 123 (56%) were discharged home, 2385 (20%) were discharged to other settings and 2914 (24%) died before neonatal discharge. 3000/5914 (51%) babies who died during neonatal care did not conform to any BAPM category. Of these, 2630/3000 (88%) were born preterm. Conclusions At least 2% of babies admitted to neonatal units had palliative care needs according to existing BAPM categories; most survived to discharge. Of deaths, 51% were not captured by the BAPM categories; most were extremely preterm.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2022-325157" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2022-325157</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).
2023
Archives of Disease in Childhood
Article
Battersby C
England
Female
Harnden F
Human
Infant
Infant Newborn
Lanoue J
long term survival
Major Clinical Study
Male
May List 2023
Modi N
Morbidity
Neonatology
Newborn
Newborn Care
Palliative Care
Palliative Therapy
Perinatal Care
Uthaya SN
Wales
-
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Title
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August 2022 List
Text
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August 2022 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2021-322262" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2021-322262</a>
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Fifteen-minute consultation: How to communicate with parents who have a child on life support with no hope of recovery
Publisher
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Archives of disease in childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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child; psychology; ethics; human; consultation; article; palliative therapy; trust; child psychiatry; counter transference; court; motivational interviewing; transference
Creator
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Swanepoel A
Description
An account of the resource
A child on life support with no hope of recovery is the worst nightmare for parents and for paediatricians. Unfortunately, some children have illnesses or injuries that are not compatible with life. Being in a vegetative state with no meaningful interaction does not safeguard children from feeling discomfort and pain. Letting nature take its course and allowing the child to die may well be the least worse option. However, this decision is fraught with difficulties for parents and for clinicians and can lead to unnecessary and painful conflict between them, even leading to court proceedings. In this paper, the impact of having a child on life support is discussed and recommendations are given in order to improve professional communication. It is hoped that an understanding of the impact on parents, cultural considerations, and the psychiatric concepts of 'denial', 'projection', the 'meta-level', 'transference', 'countertransference' and the techniques of 'motivational interviewing' will help clinicians prevent a breakdown of trust and improve doctor-parent relationships in these tragic cases. Copyright © Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2021-322262" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2021-322262</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).
2022
Archives of Disease in Childhood
Article
August 2022 List
Child
Child Psychiatry
Consultation
counter transference
court
Ethics
Human
motivational interviewing
Palliative Therapy
Psychology
Swanepoel A
transference
Trust
-
Dublin Core
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Title
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May 2022 List
Text
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May 2022 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2021-323500" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2021-323500</a>
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Crossing the line? Ethics of parenteral nutrition in paediatric neurodisability complicated by intestinal failure
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Archives of Disease in Childhood
Date
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2022
Subject
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Ethics; Intestinal failure; Neurodisability; Parenteral nutrition; Pediatrics
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McCallum Z; Delany C; Gillam L
Description
An account of the resource
Children with severe neurological impairment (such as cerebral palsy or congenital anomalies) are living longer, although medically complex, lives. Feeding intolerance is an increasing problem that is emerging as a new end-of-life issue. Long-term parenteral nutrition (LTPN) is technically feasible in these children. However, clinicians are concerned about whether it is appropriate in these circumstances or whether it constitutes a treatment 'too far'. This narrative review of the literature identifies, categorises and explores the ethical foundations and reasons for clinician hesitancy about the use of LTPN in this population. The categories of reasons are: lack of clear diagnostic criteria for feeding failure; risks of LTPN to the child; burden of LTPN to the family/caregivers; burden of LTPN to the child; difficulty in cessation of LTPN; and the concept that feeding failure may be a preterminal sign. These reasons are all ultimately about risks and burden outweighing the benefits. We argue that the risks of LTPN have decreased over time, the burden for individual children and their parents may be less than imagined, and the benefit is a realistic prospect. Case-by-case consideration, giving due weight to child and parental perspectives, can show that LTPN is ethically justified for some children with severe neurological impairment. Copyright © Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2021-323500" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2021-323500</a>
2022
Archives of Disease in Childhood
Delany C
Ethics
Gillam L
Intestinal failure
May 2022 List
McCallum Z
Neurodisability
Parenteral Nutrition
Pediatrics
-
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Title
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November 2021 List
Text
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Citation List Month
November 2021 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2021-322147" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2021-322147</a>
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Individualised decision making: interpretation of risk for extremely preterm infants-a survey of UK neonatal professionals
Publisher
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Archives of disease in childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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ethics; neonatology; perinatal; preterm; resuscitation
Creator
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Wood K; Di Stefano LM; Mactier H; Bates SE; Wilkinson D
Description
An account of the resource
BACKGROUND: The British Association of Perinatal Medicine (BAPM) published a revised framework for perinatal management of extremely preterm infants (EPIs) in 2019. We aimed to assess UK neonatal professionals' interpretation of elements of this framework, as well as the consistency of their estimates of outcome for EPIs. METHOD(S): An online survey gave participants five cases involving anticipated extremely preterm birth with different favourable and unfavourable risk factors. Respondents were asked to assign a risk category and management option using the BAPM framework and to estimate the chance of survival if the baby received active resuscitation and the chance of severe disability if they survived. RESULT(S): Respondents were consistent in interpretation of risk categories. The majority would follow parental wishes about management. Management decisions did not always correspond with risk assessment, with less inclination to recommend palliative (comfort) care. There were wide estimates of survival or severe disability (5%-90%) with consultants providing lower estimates of severe disability than other groups. CONCLUSION(S): UK neonatal professionals deferred to parental wishes in the cases presented, indicating an emphasis on shared decision making. However, they did not necessarily use the risk stratification approach for management decisions. Variation in estimates of outcome raises questions about the accuracy of informed decision making and suggests support is needed for UK clinicians to incorporate risk factors into individualised counselling. There may be value in validating existing online risk calculators for UK infants or in developing a UK specific risk model. Copyright © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2021-322147" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2021-322147</a>
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2021
Archives of Disease in Childhood
Bates SE
Di Stefano LM
Ethics
Mactier H
Neonatology
November 2021 List
Perinatal
preterm
Resuscitation
Wilkinson D
Wood K
-
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October 2021 List
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October 2021 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2020-319700" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2020-319700</a>
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Place of death of children and young adults with a life-limiting condition in England: a retrospective cohort study
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Archives of Disease in Childhood
Date
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2021
Subject
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children; young adult; epidemiology; mortality; palliative care
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Gibson-Smith D; Jarvis SW; Fraser LK
Description
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Objective To assess trends in place of death for children with a life-limiting condition and the factors associated with death at home or hospice rather than hospital. Design Observational cohort study using linked routinely collected data. Setting England. Patients Children aged 0–25 years who died between 2003 and 2017. Main outcome measures Place of death: hospital, hospice, home. Multivariable multinomial logistic regression models. Results 39 349 children died: 73% occurred in hospital, 6% in hospice and 16% at home. In the multivariable models compared with dying in a hospital: neonates were less likely, and those aged 1–10 years more likely, than those aged 28 days to <1 year to die in hospice. Children from all ethnic minority groups were significantly less likely to die in hospice, as were those in the most deprived group (RR 0.8, 95% CI 0.7 to 0.9). Those who died from 2008 were more likely than those who died earlier to die in a hospice.Children with cancer (RR 4.4, 95% CI 3.8 to 5.1), neurological (RR 2.0, 95% CI 1.7 to 2.3) or metabolic (RR 3.7, 95% CI 3.0 to 4.6) diagnoses were more likely than those with a congenital diagnosis to die in a hospice.Similar patterns were seen for clinical/demographic factors associated with home versus hospital deaths. Conclusions Most children with a life-limiting condition continue to die in the hospital setting. Further research on preferences for place of death is needed especially in children with conditions other than cancer. Paediatric palliative care services should be funded adequately to enable equal access across all settings, diagnostic groups and geographical regions.
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<a href="http://doi.org/10.1136/archdischild-2020-319700" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2020-319700</a>
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2021
Archives of Disease in Childhood
Children
Epidemiology
Fraser LK
Gibson-Smith D
Jarvis SW
Mortality
October 2021 List
Palliative Care
Young Adult
-
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July 2021 List
Text
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July 2021 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2021-321808" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2021-321808</a>
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Facilitators and barriers to the delivery of palliative care to children with life-limiting and life-threatening conditions: a qualitative study of the experiences and perceptions of healthcare professionals
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Archives of Disease in Childhood
Date
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2021
Subject
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child; health services research; palliative care; qualitative research
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Mitchell S; Slowther AM; Coad J; Bertaud S; Dale J
Description
An account of the resource
OBJECTIVE: To understand healthcare system facilitators and barriers to the delivery of palliative care for children with life-limiting and life-threatening conditions and their family members. DESIGN: Focus groups with children's palliative care professionals. Data were analysed using thematic analysis. SETTING: Four regions of England (West Midlands, South West, Yorkshire and Humber, and London) from December 2017 to June 2018. PARTICIPANTS: Healthcare professionals (doctors, nurses and allied healthcare professionals) working in children's palliative care services. FINDINGS: A total of 71 healthcare professionals participated in the focus groups. Three overarching themes were identified which influenced whether and when children were referred to and started to receive palliative care: (1) the unspoken background of clinical uncertainty which often delayed palliative care; (2) the cultural 'collusion of immortality', where conversations about the possibility of dying can be avoided or deferred; and (3) the role of paediatric palliative care teams in 'illuminating the blind spot' of palliative care as well as providing hands-on care. CONCLUSIONS: Palliative care is a holistic approach to care that focuses on quality of life for people living with life-limiting and life-threatening conditions that can be delivered alongside active treatment. There is a need to prioritise and integrate this into healthcare services for children more effectively if improvements in care are to be realised. While more specialist paediatric palliative care services are needed, the unspoken background of clinical uncertainty needs to be addressed together with the collusion of immortality within healthcare culture and organisations.
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<a href="http://doi.org/10.1136/archdischild-2021-321808" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2021-321808</a>
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2021
Archives of Disease in Childhood
Bertaud S
Child
Coad J
Dale J
Health Services Research
July 2021 List
Mitchell S
Palliative Care
Qualitative Research
Slowther AM
-
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July 2021 List
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July 2021 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2020-320871" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2020-320871</a>
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Ethical issues in treatment of babies born at 22 weeks of gestation
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Archives of Disease in Childhood
Date
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2020
Subject
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ethics; neonatal; life sustaining treatment; premature birth; gestational viability
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Lantos JD
Description
An account of the resource
Many centres now report that more than half of babies born at 22 weeks survive and most survivors are neurocognitively intact. Still, many centres do not offer life-sustaining treatment to babies born this prematurely. Arguments for not offering active treatment reflect concerns about survival rates, rates of neurodevelopmental impairment and cost. In this essay, I examine each of these arguments and find them ethically problematic. I suggest that current data ought to lead to two changes. First, institutional culture should change at institutions that do not offer treatment to babies born at 22 weeks. Second, we need more research to understand best practices for these tiny babies. Copyright © Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.
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<a href="http://doi.org/10.1136/archdischild-2020-320871" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2020-320871</a>
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2020
Archives of Disease in Childhood
Ethics
gestational viability
July 2021 List
Lantos JD
Life Sustaining Treatment
Neonatal
premature birth
-
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Title
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May 2021 List
Text
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May 2021 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2020-320975" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2020-320975</a>
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Parents' perspectives on conflict in paediatric healthcare: A scoping review
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Archives of Disease in Childhood
Date
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2021
Subject
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conflict; paediatric; palliative care; parent perspectives; psychology
Creator
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Parsons E; Darlington AS
Description
An account of the resource
Background: Conflict in paediatric healthcare is becoming increasingly prevalent, in particular relation to paediatric end of life. This is damaging to patients, families, professionals and healthcare resources. Current research has begun to explore perspectives of healthcare professionals (HCPs), but the parental views on conflict are lacking. Objective(s): This scoping review explores parental views on conflict during a child's end of life. In addition, parental views are mapped onto HCPs' views. Method(s): A search was completed of the databases CINAHL, PubMed, Web of Science, Embase and Medline between 1997 and 2019, focused on parents of children with involvement with palliative or end-of-life care referring to conflict or disagreements. Result(s): The review found 10 papers that included parental views on conflict. Data on conflict were categorised into the following seven themes: communication breakdown, trust, suffering, different understanding of a best interest', disagreements over treatment, spirituality and types of decision-making. In particular, parental expertise, perspectives on suffering and ways of making decisions were significant themes. A subset of themes mirror those of HCPs. However, parents identified views of conflict unique to their perspective. Conclusion(s): Parents identified important themes, in particular their perspective of what constitutes suffering and best interest'. In addition, parents highlight the importance of being recognised as an expert. Copyright © Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2020-320975" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2020-320975</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).
2021
Archives of Disease in Childhood
Conflict
Darlington AS
May 2021 List
Paediatric
Palliative Care
parent perspectives
Parsons E
Psychology
-
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Title
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May 2021 List
Text
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May 2021 List
URL Address
<a href="http://doi.org/10.1136/bmjopen-2019-034024" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjopen-2019-034024</a>
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Health of mothers of children with a life-limiting condition: A comparative cohort study
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Archives of Disease in Childhood
Date
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2021
Subject
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Children with life-threatening or life-limiting illnesses; morbidity; Mothers/psychology; parental experience
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Fraser LK; Murtagh FEM; Aldridge J; Sheldon T; Gilbody S; Hewitt C
Description
An account of the resource
Objective: This study aimed to quantify the incidence rates of common mental and physical health conditions in mothers of children with a life-limiting condition. Method(s): Comparative national longitudinal cohort study using linked primary and secondary care data from the Clinical Practice Research Datalink in England. Maternal-child dyads were identified in these data. Maternal physical and mental health outcomes were identified in the primary and secondary care datasets using previously developed diagnostic coding frameworks. Incidence rates of the outcomes were modelled using Poisson regression, adjusting for deprivation, ethnicity and age and accounting for time at risk. Result(s): A total of 35 683 mothers; 8950 had a child with a life-limiting condition, 8868 had a child with a chronic condition and 17 865 had a child with no long-term condition. The adjusted incidence rates of all of the physical and mental health conditions were significantly higher in the mothers of children with a life-limiting condition when compared with those mothers with a child with no long-term condition (eg, depression: incidence rate ratio (IRR) 1.21, 95% CI 1.13 to 1.30; cardiovascular disease: IRR 1.73, 95% CI 1.27 to 2.36; death in mothers: IRR 1.59, 95% CI 1.16 to 2.18). Conclusion(s): This study clearly demonstrates the higher incidence rates of common and serious physical and mental health problems and death in mothers of children with a life-limiting condition. Further research is required to understand how best to support these mothers, but healthcare providers should consider how they can target this population to provide preventative and treatment services. Copyright © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.
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<a href="http://doi.org/10.1136/bmjopen-2019-034024" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2019-034024</a>
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2021
Aldridge J
Archives of Disease in Childhood
Children With Life-threatening Or Life-limiting Illnesses
Fraser LK
Gilbody S
Hewitt C
May 2021 List
Morbidity
Mothers/psychology
Murtagh FEM
parental experience
Sheldon T
-
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Title
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March 2021 List
Text
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March 2021 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2019-317861" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2019-317861</a>
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Title
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Independent hospices for children and young people; Hospices North East
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Archives of Disease in Childhood
Date
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2021
Subject
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children collaborative hospices England hospice
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Brown A; Newton J; Nicholson C; Fearing A; Gordon S; Wood P; Egdell A; McKean MC; Ellam J
Description
An account of the resource
In 2012 more than 2000 children and young people (CYP) aged 1–19 died in England and Wales. For CYP, cancer, nervous system, respiratory, cardiovascular and congenital conditions account for about 60% of deaths. The nine independent hospices across North East England have formed a collaborative (Hospices North East, HNE) working together to enable collective description of the type and volume of services provided, and the patients and their families served. We describe the services provided for CYP.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2019-317861" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-317861</a>
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2021
Archives of Disease in Childhood
Brown A
children collaborative hospices England hospice
Egdell A
Ellam J
Fearing A
Gordon S
March 2021 List
McKean MC
Newton J
Nicholson C
Wood P
-
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Title
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January 2021 List
Text
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Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2020-320353" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2020-320353</a>
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Consulting with young people: informing guidelines for children's palliative care
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Archives of Disease in Childhood
Date
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2020
Subject
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palliative care; qualitative research; adolescent health
Creator
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Taylor J; Murphy S; Chambers L; Aldridge J
Description
An account of the resource
OBJECTIVE: Increasingly the views of young people are sought when improving healthcare; however, it is unclear how they shape policy or practice. This paper presents a consultation with young people commissioned by the National Institute for Health and Care Excellence (NICE) to inform clinical guidelines for paediatric palliative care (end-of-life care for infants, children and young people). METHODS: The consultation involved qualitative thematic analysis of data from 14 young people (aged 12-18 years) with a life-limiting or life-threatening condition who took part in focus groups or interviews. The topics explored were predefined by NICE: information and communication; care planning; place of care; and psychological care. Data collection consisted of discussion points and activities using visual cues and was informed by a pilot consultation group with five young adults (aged 19-24 years). Findings were shared with participants, and feedback helped to interpret the findings. RESULTS: Four overarching themes were identified, cutting across the predetermined topic areas: being treated as individuals with individual needs and preferences; quality of care more important than place; emotional well-being; and living as a young person. Importantly, care planning was viewed as a tool to support living well and facilitate good care, and the young people were concerned less about where care happens but who provides this. CONCLUSION: Young people's priorities differ from those of parents and other involved adults. Incorporating their priorities within policy and practice can help to ensure their needs and preferences are met and relevant research topics identified.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2020-320353" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2020-320353</a>
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2020
Adolescent health
Aldridge J
Archives of Disease in Childhood
Chambers L
January 2021 List
Murphy S
Palliative Care
Qualitative Research
Taylor J
-
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Title
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January 2021 List
Text
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January 2021 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2020-320189" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2020-320189</a>
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Experiences of healthcare, including palliative care, of children with life-limiting and life-threatening conditions and their families: A longitudinal qualitative investigation
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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palliative care; healthcare improvement; Healthcare professional; Children and Families; Life-Limiting/Life Threatening Illness
Creator
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Mitchell S; Slowther AM; Coad J; Dale J
Description
An account of the resource
Objectives: To understand the experiences and perceptions of healthcare services of children with life-limiting and life-threatening conditions and their family members, including palliative care. Design(s): Longitudinal qualitative interview study with children and their family members. Up to three in-depth interviews were conducted over 13 months with each child and family. Data were analysed using thematic analysis. Setting(s): Community and hospital settings in the West Midlands, UK. Participant(s): Children with a diverse range of life-limiting and life-threatening conditions, aged between 5 and 18 years, and their family members. Finding(s): 31 participants from 14 families including10 children took part in 41 interviews. Two children died during the course of the study. Children accepted their conditions as part of life and had other priorities for living. Experiences of a fighting' a fragmented healthcare system that focused on the biomedical aspects of their care were described. The possibility of death was rarely openly discussed. Palliative care tended to be conceptualised as a distinct service or phase of a child's condition, rather than a broad approach.Access to palliative care depended on the availability of specialist services, and on trusted interpersonal relationships with healthcare professionals who could share uncertainty and the family's emotional burden. Conclusion(s): There is an urgent need to create a more child and family centred approach that enables palliative care to be truly integrated into the wider healthcare of children with life-limiting and life-threatening conditions. Trusted, interpersonal relationships with healthcare professionals, and more effective coordination of care are fundamental to achieving this, and should be valued and enabled throughout the healthcare system. Copyright © 2020 Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2020-320189" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2020-320189</a>
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2020
Archives of Disease in Childhood
Children And Families
Coad J
Dale J
healthcare improvement
Healthcare Professional
January 2021 List
Life-limiting/life Threatening Illness
Mitchell S
Palliative Care
Slowther AM
-
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Title
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December 2020 List
Text
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Citation List Month
December 2020 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2019-318398" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2019-318398</a>
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Title
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Breaking Bad News: What Parents Would Like You to Know
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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comm child health; palliative care; patient perspective; qualitative research
Creator
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Brouwer MA; Maeckelberghe ELM; van der Heide A; Hein IM; Verhagen EAA
Description
An account of the resource
OBJECTIVE: Breaking bad news about life-threatening and possibly terminal conditions is a crucial part of paediatric care for children in this situation. Little is known about how the parents of children with life-threatening conditions experience communication of bad news. The objective of this study is to analyse parents' experiences (barriers and facilitators) of communication of bad news. DESIGN: A qualitative study consisting of a constant comparative analysis of in-depth interviews conducted with parents. SETTING: The Netherlands. PARTICIPANTS: Sixty-four parents-bereaved and non-bereaved-of 44 children (aged 1-12 years, 61% deceased) with a life-threatening condition. INTERVENTIONS: None. RESULTS: Based on parents' experiences, the following 10 barriers to the communication of bad news were identified: (1) a lack of (timely) communication, (2) physicians' failure to ask parents for input, (3) parents feel unprepared during and after the conversation, (4) a lack of clarity about future treatment, (5) physicians' failure to voice uncertainties, (6) physicians' failure to schedule follow-up conversations, (7) presence of too many or unknown healthcare professionals, (8) parental concerns in breaking bad news to children, (9) managing indications of bad news in non-conversational contexts, and (10) parents' misunderstanding of medical terminology. CONCLUSIONS: This study shows healthcare professionals how parents experience barriers in bad news conversations. This mainly concerns practical aspects of communication. The results provide practical pointers on how the communication of bad news can be improved to better suit the needs of parents. From the parents' perspective, the timing of conversations in which they were informed that their child might not survive was far too late. Sometimes, no such conversations ever took place.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2019-318398" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-318398</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).
2020
Archives of Disease in Childhood
Brouwer MA
comm child health
December 2020 List
Hein IM
Maeckelberghe ELM
Palliative Care
Patient Perspective
Qualitative Research
van der Heide A
Verhagen EAA
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1136/adc.85.1.29" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/adc.85.1.29</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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Characterisation of breathing and associated central autonomic dysfunction in the Rett disorder
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Pediatrics; hyperventilation; angiotensin-ii; autonomic system; brain stem; component; dysautonomia; immaturity; neurons; nucleus-tractus-solitarii; protein-2; real-time; reflexes; Rett disorder; vagal tone; breathing difficulties; Rett syndrome; trajectory; characteristics; abnormal respiratory rhythm
Creator
An entity primarily responsible for making the resource
Julu P O O; Kerr A M; Apartopoulos F; Al-Rawas S; Engerstrom I W; Engerstrom L; Jamal G A; Hansen S
Description
An account of the resource
Aim-To investigate breathing rhythm and brain stem autonomic control in patients with Rett disorder. Setting-Two university teaching hospitals in the United Kingdom and the Rett Centre, Sweden. Patients-56 female patients with Rett disorder, aged 2-35 years; 11 controls aged 5-28 years. Design-One hour recordings of breathing movement, blood pressure, ECG R-R interval, heart rate, transcutaneous blood gases, cardiac vagal tone, and cardiac sensitivity to baroreflex measured on-line with synchronous EEG and video. Breathing rhythms were analysed in 47 cases. Results-Respiratory rhythm was normal during sleep and abnormal in the waking state. Forced and apneustic breathing were prominent among 5-10 year olds, and Valsalva breathing in the over 18 year olds, who were also most likely to breathe normally. Inadequate breathing peaked among 10-18 year olds. Inadequate and exaggerated breathing was associated with vacant spells. Resting cardiac vagal tone and cardiac sensitivity to baroreflex were reduced. Conclusions-Labile respiratory rhythms and poor integrative inhibition in Rett disorder suggest brain immaturity. Linking this to an early monoaminergic defect suggests possible targets for the MECP2 gene in clinical intervention. Exaggerated and inadequate autonomic responses may contribute to sudden death.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/adc.85.1.29" target="_blank" rel="noreferrer noopener">10.1136/adc.85.1.29</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).
2001
abnormal respiratory rhythm
Al-Rawas S
angiotensin-ii
Apartopoulos F
Archives of Disease in Childhood
autonomic system
brain stem
breathing difficulties
characteristics
component
Dysautonomia
Engerstrom I W
Engerstrom L
Hansen S
hyperventilation
immaturity
Jamal G A
Julu P O O
Kerr A M
Neurons
nucleus-tractus-solitarii
Pediatrics
protein-2
real-time
reflexes
Rett disorder
Rett syndrome
Trajectory
vagal tone
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1136/adc.2004.065482" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/adc.2004.065482</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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Sleep disturbance in Sanfilippo syndrome: a parental questionnaire study
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Treatment Outcome; Infant Newborn; Humans; Adolescent; Child Preschool; Infant; Questionnaires; Age of Onset; Incidence; Behavior Therapy; Melatonin/therapeutic use; Mucopolysaccharidosis III/psychology; Sleep Disorders/epidemiology/etiology/therapy; Q3 Literature Search; child; adult; Adolescent; Adult; Age of Onset; Behavior Therapy; Child; Preschool; Humans; Incidence; Infant; sleep disturbance/disorders; MPS III; trajectory; characteristics; melatonin; benzodiazepines
Creator
An entity primarily responsible for making the resource
Fraser J; Gason A A; Wraith J E; Delatycki M B
Description
An account of the resource
AIMS: To determine the incidence, manifestations, and best management of sleep disturbance in Sanfilippo syndrome (mucopolysaccharidosis (MPS) type III). METHODS: Families were ascertained through the MPS societies of Australasia, the UK, and the USA. Questionnaires were sent by mail and were answered anonymously. Identical questions regarding sleep disturbance were asked about unaffected siblings to provide control data. Sleep disturbance was quantified by a total sleep disturbance score. RESULTS: A total of 141 responses were received; 91.5% of children with Sanfilippo syndrome had sleep disturbance and this was significantly higher than for their unaffected sibs; 77.5% of parents had used medication for this problem, with melatonin and antihistamines being most commonly used. Melatonin and benzodiazepines were reported as the most efficacious. Many different environmental modifications had been employed for this problem and some parents reported success with behavioural therapies. CONCLUSIONS: Sleep disturbance is common, severe, and difficult to manage in Sanfilippo syndrome. Based on the parental responses and its safety profile, melatonin is the first line drug that should be tried. Behavioural therapy should be tried in all with Sanfilippo syndrome and sleep disturbance.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/adc.2004.065482" target="_blank" rel="noreferrer noopener">10.1136/adc.2004.065482</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).
2005
Adolescent
Adult
Age of Onset
Archives of Disease in Childhood
Behavior Therapy
Benzodiazepines
characteristics
Child
Child Preschool
Delatycki M B
Fraser J
Gason A A
Humans
Incidence
Infant
Infant Newborn
melatonin
Melatonin/therapeutic use
MPS III
Mucopolysaccharidosis III/psychology
Preschool
Q3 Scoping Review Results
Questionnaires
Sleep Disorders/epidemiology/etiology/therapy
sleep disturbance/disorders
Trajectory
Treatment Outcome
Wraith J E
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1136/adc.75.5.448" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/adc.75.5.448</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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Developmental and behavioural characteristics of cri du chat syndrome
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
1996
Subject
The topic of the resource
behavior; bowel incontinence; feeding difficulties; tone and motor problems; urinary incontinence; cri-du-chat; trajectory; characteristics; self-injury; repetitive movements; sound hypersensitivity; clumsiness; obsessive attachment to objects
Creator
An entity primarily responsible for making the resource
Cornish K M; Pigram J
Description
An account of the resource
Developmental and behavioural characteristics were assessed in 27 children with cri du chat syndrome using the Society for the Study of Behavioural Phenotypes questionnaire, which gave information on prenatal and perinatal conditions, neurological problems, and developmental and behavioural difficulties. The findings suggest that the behavioural profile of children with cri du chat syndrome incorporates self injurious behaviour, repetitive movements, hypersensitivity to sound, clumsiness, and obsessive attachments to objects. In terms of a developmental profile, children with cri du chat syndrome were able to communicate their needs, socially interact with others, and have some degree of mobility.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/adc.75.5.448" target="_blank" rel="noreferrer noopener">10.1136/adc.75.5.448</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).
1996
Archives of Disease in Childhood
Behavior
bowel incontinence
characteristics
clumsiness
Cornish K M
Cri-du-chat
feeding difficulties
obsessive attachment to objects
Pigram J
repetitive movements
self-injury
sound hypersensitivity
tone and motor problems
Trajectory
urinary incontinence
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1136/adc.81.4.333" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/adc.81.4.333</a>
Dublin Core
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Title
A name given to the resource
Behavioural phenotype of Cornelia de Lange syndrome
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
1999
Subject
The topic of the resource
behavior; constipation; feeding difficulties; sleep disturbance; tone and motor problems; De Lange syndrome; trajectory; characteristics; hyperactivity; self-injury; aggression
Creator
An entity primarily responsible for making the resource
Berney T P; Ireland M; Burn J
Description
An account of the resource
A postal questionnaire was used to study 49 individuals with Cornelia de Lange syndrome (including both the classical and the mild forms) to ascertain behavioural phenotype. Ages ranged from early childhood to adulthood (mean age, 10.2 years; SD, 7.8) and the degree of mental retardation from borderline (10%), through mild (8%), moderate (18%), and severe (20%) to profound (43%). A wide variety of symptoms occurred frequently, notably hyperactivity (40%), self injury (44%), daily aggression (49%), and sleep disturbance (55%). These correlated closely with the presence of an autistic like syndrome and with the degree of mental retardation. The frequency and severity of disturbance, continuing beyond childhood, is important when planning the amount and duration of support required by parents. Behaviour disturbance is common in Cornelia de Lange syndrome and becomes more frequent as mental retardation becomes more severe Typical features include hyperactivity, self injury, aggressive behaviour, and sleep disturbance Self injury was more frequent in those over 12 years age An autistic syndrome was a frequent finding, particularly in those with severe mental retardation
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/adc.81.4.333" target="_blank" rel="noreferrer noopener">10.1136/adc.81.4.333</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).
1999
Aggression
Archives of Disease in Childhood
Behavior
Berney T P
Burn J
characteristics
Constipation
De Lange syndrome
feeding difficulties
hyperactivity
Ireland M
self-injury
sleep disturbance
tone and motor problems
Trajectory
-
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 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
October 2019 List
URL Address
<a href="https://adc.bmj.com/content/104/Suppl_3/A321.1" target="_blank" rel="noreferrer noopener">https://adc.bmj.com/content/104/Suppl_3/A321.1</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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The agony of the child with complexity: Exploring the psychological impact on parents caring for children with complex healthcare needs
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Medline; child; female; human; male; qualitative research; conference abstract; caregiver; systematic review; meta analysis; publication; social support; depression; sample size; disease exacerbation; North America; health care need; Ireland; medical leave; mental stress; parental stress; prevention; psychological well-being; social isolation
Creator
An entity primarily responsible for making the resource
Crothers E; Bradbury M; Lewis S; O'Gorman C; Murphy A M
Description
An account of the resource
Aims: Medical advances and improved neonatal care have led to increased survival of children with complex healthcare needs. The aim of this literature review was to explore what is known about the psychological impact on parents of caring for children with complex healthcare needs across North America and Europe, and more specifically within Ireland. Method(s): A comprehensive search of the literature published within the last ten years was performed using PubMed and PyschINFO databases. Ten papers, consisting of qualitative studies and meta-analyses, which varied in sample size and methodology, were selected for detailed review. Result(s): Recent publications emphasise that caring for a child with complex care needs has a significant negative impact on the psychological wellbeing of parents. Several qualitative studies have shown that caregivers of children with life-limiting illness are up to twice as likely to report higher levels of parenting stress and depressive symptoms than parents of healthy children. The literature suggests that women experience greater parenting stress in caring for severely ill children than men, with one study noting an increase in maternal sick leave for psychological distress. However, women were more likely to report being the predominant caregiver, which could account for this discrepancy. Social isolation was a recurring factor contributing to the perceived burden of stress experienced by caregivers. Similar themes were evident across North America and Europe publications. We noted a paucity of research in the Irish context. Conclusion(s): Further research is needed to evaluate the psychological impact of caring for a child with complex healthcare needs and to guide management and prevention of parental stress and psychological illness, particularly in Ireland. Additional studies are needed to determine if increased social support reduces psychological stress and to investigate the effects of parental stress on disease progression in children with complex heathcare needs.
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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).
2019
Archives of Disease in Childhood
Bradbury M
Caregiver
Child
conference abstract
Crothers E
Depression
disease exacerbation
Female
health care need
Human
Ireland
Lewis S
Male
medical leave
Medline
Mental Stress
meta analysis
Murphy A M
North America
O'Gorman C
October 2019 List
Parental Stress
Prevention
Psychological Well-being
publication
Qualitative Research
Sample Size
Social Isolation
Social Support
Systematic Review
-
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 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
October 2019 List
URL Address
<a href="https://adc.bmj.com/content/104/Suppl_3/A296.1" target="_blank" rel="noreferrer noopener">https://adc.bmj.com/content/104/Suppl_3/A296.1</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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Providing cost-effective and coordinated care for children with medical complexity
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adolescent; child; female; home care; human; major clinical study; male; controlled study; nurse; multicenter study; conference abstract; caregiver; gastrostomy; cerebral palsy; pediatrician; outpatient; administrative personnel; artificial ventilation; congenital heart disease; diagnosis; fatigue; limited mobility; machine; medical technology; multidisciplinary team; neuromuscular disease; salary; stress; tracheostomy; ventilator; working time
Creator
An entity primarily responsible for making the resource
Chow C; Shahdadpuri R
Description
An account of the resource
Introduction: Many paediatric hospitals are treating increasing numbers of children with medical complexity (CMC), diagnosed with chronic life-limiting illnesses and requiring life-sustaining home medical technology. These medically fragile children and families are at risk of fragmented care, sub-optimal continuity and high healthcare resource utilization due to their multiple medical issues and care needs. Consequently, the Children's Complex and Home Care Services (CCHS) was established in our institution in April 2016 with the primary aims of providing coordinated, cost-effective and patient- and family-centered care to CMC and their families. This service is run by a multi-disciplinary team of pediatricians, nurses, allied health and administrative staff. CMC in our context have a chronic life-limiting condition that involves at least three body systems and are often technologically dependent with limited mobility. In view of the numerous healthcare professionals involved in their care, multiple medical appointments are often scheduled which result in significant caregiver stress and fatigue. One of the key service implementations was multidisciplinary clinics whereby children are seen over the course of 1-3 hours by multiple clinical, nursing and allied health specialists. The purpose of this study is to describe CCHS service implementations, characterize CCHS patient characteristics and evaluate how multidisciplinary clinics have reduced their healthcare resource utilization. Method(s): 55 patients who were enrolled in the CCHS between April 2016 and October 2018 were studied. Result(s): Patient ages ranged from 2 months to 14.3 years old at time of enrolment. The majority of patients had underlying primary genetic diagnoses (47.2%), and other patients had either the primary diagnosis of cerebral palsy (20%), congenital cardiac disease (5.4%), neuromuscular disease (3.6%) or another or undiagnosed underlying condition (23.6%). Medical technology required at time of enrolment included enteral devices such as nasogastric/nasojejunal tubes or gastrostomies (94.5%), suctioning machines (54.5%), ventilator support (34.5%) and tracheostomies (16.4%). CCHS multidisciplinary clinics managed to reduce the number of outpatient attendances by 6.8 visits per patient-year for CMC enrolled into the service. This saves caregivers from an equivalent number of workdays of lost salary, and translates to C 450 of savings per patient per year on just transportation costs alone. Conclusion(s): CMC are heterogeneous in conditions but similar in care needs, and reducing outpatient attendances and healthcare costs is possible with coordinated multi-disciplinary clinics.
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
administrative personnel
Adolescent
Archives of Disease in Childhood
Artificial Ventilation
Caregiver
Cerebral Palsy
Child
Chow C
conference abstract
Congenital Heart Disease
Controlled Study
Diagnosis
Fatigue
Female
Gastrostomy
Home Care
Human
limited mobility
machine
Major Clinical Study
Male
Medical Technology
Multicenter Study
Multidisciplinary team
Neuromuscular Disease
Nurse
October 2019 List
Outpatient
Pediatrician
salary
Shahdadpuri R
Stress
Tracheostomy
ventilator
working time
-
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 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
October 2019 List
URL Address
<a href="https://adc.bmj.com/content/104/Suppl_3/A64.3" target="_blank" rel="noreferrer noopener">https://adc.bmj.com/content/104/Suppl_3/A64.3</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
Challenges experienced by paediatricians providing palliative care to children; A thematic analysis
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
death; child; female; human; major clinical study; male; palliative therapy; controlled study; thematic analysis; human experiment; learning; pediatrics; conference abstract; questionnaire; e-mail; pediatrician; health care system; needs assessment; Australia; expectation; holistic care; social welfare; specialist registrar
Creator
An entity primarily responsible for making the resource
Balfe J; Whitla L; Devins M; Molloy E; Twomey M; O'Reilly M
Description
An account of the resource
Background: and aim Palliative Care for Children is defined as 'an active and total approach to care, from the point of diagnosis or recognition throughout the child's life, death and beyond'. It is recognised that the prevalence of children with life-limiting conditions (LLC) is increasing. In Ireland the majority of children with LLC are cared for by paediatricians working in hospitals with no direct access to specialist paediatric palliative care(PPC) services. This study was part of a learning needs assessment of paediatrician's training and experience in PPC. Method(s): Consultants and Specialist Registrars in Paediatrics were approached by email and asked to complete a questionnaire regarding their learning needs in PPC. The Quality of Care Collaborative for Australia in PPC Project Research Study Group Learning Needs Assessment template was used with permission. The questionnaire included both multiple choice and free-text questions. Quantitative data from the study has been reported elsewhere. Thematic analysis based on the approach of Braun and Clarke (2006) was used to analyse data provided in the free-text answers. Result(s): 114 paediatricians responded to the survey, 72 respondents (63%) provided free-text answers to the question 'Reflecting on your most recent clinical interactions with children requiring palliative care support. What were the challenges?' On analysis, three overarching themes emerged, 'Best interests of the child', 'Inadequate training and confidence' and 'Co-ordinating care'. 'Best interests of the child' referred to the challenges experienced in ensuring that best interests of the child remain at the core of all decisions made when providing palliative care. This overarching theme included two sub-themes 'Complex communication' which referred to the challenges in managing parental expectations in increasingly technologically advanced healthcare systems and 'First do no harm' referring to the frequent ethical dilemmas that arise in PPC. 'Inadequate adequate training and confidence' referred to lack of specific education in complex symptom management and also to lack of familiarity with community based healthcare services. The theme of 'coordinating care' encompassed the need to liaise with community services but also the need to provide holistic care to the whole family which may be unfamiliar paediatricians working in an acute hospital setting. Conclusion(s): This study explores the challenges experienced by paediatricians providing palliative care to children with LLCs. The themes provide insight into those experiences and provides valuable direction to support the development of future educational programmes in this important and rapidly evolving paediatric sub-speciality.
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
Archives of Disease in Childhood
Australia
Balfe J
Child
conference abstract
Controlled Study
Death
Devins M
E-mail
Expectation
Female
Health Care System
Holistic Care
Human
Human Experiment
Learning
Major Clinical Study
Male
Molloy E
Needs Assessment
O'Reilly M
October 2019 List
Palliative Therapy
Pediatrician
Pediatrics
Questionnaire
Social Welfare
specialist registrar
Thematic Analysis
Twomey M
Whitla L
-
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
August 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
August 2019 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2019-rcpch.452" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2019-rcpch.452</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
Rapid response physiotherapy service in patients with life limiting conditions
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
child; female; human; male; controlled study; clinical article; quality of life; conference abstract; hospital admission; hospital bed; hospitalization; lower respiratory tract infection; physiotherapist; physiotherapy; risk assessment; sample size
Creator
An entity primarily responsible for making the resource
Michael A; Milner S; Griffin H
Description
An account of the resource
Background Children with chronic illness and life limiting conditions are often more prone to respiratory illnesses due to problems with increased secretions and reduced ability to clear them. The aim of rapid response physiotherapists (RRP) in this patient demographic is to reduce frequency of lower respiratory tract infections and ultimately A and E attendances and admission to hospital. Methods We evaluated A and E attendances, hospital admissions and bed days for patients with life limiting conditions felt to be at risk of recurrent lower respiratory tract infections before and after the introduction of a RRP service. Results 10 children were eligible for inclusion in analysis before and 15 children were identified after the introduction of a RRP. A and E attendances before and after RRP (per patient per year) were 2.5 and 1.8 respectively. Hospital admissions were 1.4 admissions per patient per year in both groups. Length of hospital stay, or bed days had the biggest reduction between groups with 13.4 (days per patient per year) before and 4.8 after RRP. Conclusions We have shown that with the introduction of an RRP the number of A and E attendances and hospital bed days has reduced in absolute terms. Whilst the difference is only small, reduction in hospital contact in a cohort where quality of life is of upmost importance is paramount. To truly analyse this data statistically a larger sample size is needed.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2019-rcpch.452" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-rcpch.452</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).
2019
Archives of Disease in Childhood
August 2019 List
Child
Clinical Article
conference abstract
Controlled Study
Female
Griffin H
Hospital Admission
hospital bed
Hospitalization
Human
lower respiratory tract infection
Male
Michael A
Milner S
physiotherapist
Physiotherapy
Quality Of Life
Risk Assessment
Sample Size
-
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August 2019 List
Text
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August 2019 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2019-rcpch.457" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2019-rcpch.457</a>
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Title
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End of life care in children with neurodisability and concurrent palliative care needs: An audit of local Paediatric palliative services
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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child; female; human; male; palliative therapy; awareness; clinical article; terminal care; pain; school child; conference abstract; decision making; monitoring; Canavan disease; cerebral palsy; disorders of mitochondrial functions; documentation; medical specialist; nutrition; Rett syndrome; secondary health care; seizure; social care; spinal muscular atrophy
Creator
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Hqli F; Santhanam G
Description
An account of the resource
Aims A proportion of children with neurodisability will have life-limiting conditions, whereby their complex continuing needs increase the intricacy and urgency for providing comprehensive supportive care to these families. Equal access to universal and specialist paediatric palliative care (PPC) services should therefore be available depending on the child's needs. In our local borough there is a distinct group of children with complex neurodisabilities requiring input from hospital and community paediatricians, and the specialist PPC team. This audit aims to assess whether the current palliative care provided to these children is meeting the standards set by NICE guidance (2016). Methods Approval was granted by the Clinical Effectiveness Unit and audit lead locally. Standards set by NICE guidance (NG61) were used, with a target compliance of 100%. Eleven children were identified to have a neurodisability with ongoing PPC input. Primary and secondary care health records were used for collection of data, which was subsequently analysed on a password-protected spreadsheet. Results There were nine males and two females, with a mean age of 10.44 years. Underlying diagnoses include cerebral palsy (n=4); leukodystrophy (n=2); spinal muscular atrophy, movement disorder, Canavan syndrome, mitochondrial disease, and Rett syndrome (n=1 each). All children were enterally fed. Four areas of interest within the NICE guidance were identified for data collection: care planning and support, Advance Care Plan (ACP), symptom management, and input from the PPC team. Results showed that symptoms, growth and nutrition, and social care needs were addressed in all children (100%). 82% were reviewed by the PPC team in the past year; 88% had their medications adjusted accordingly when appropriate; and 91% had an ACP in place. Conclusions This audit demonstrated parents' and carers' involvement in the decision-making process for the child and their awareness of the child's life-limiting condition; adequate management of symptoms, monitoring of growth and nutrition; and the presence of an ACP in most children. Identified areas for development include having a named medical specialist for each child; regular review of the ACP by the PPC team; and clear documentation of seizure management in the child's ACP, and the stepwise management of pain.
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<a href="http://doi.org/10.1136/archdischild-2019-rcpch.457" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-rcpch.457</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).
2019
Archives of Disease in Childhood
August 2019 List
Awareness
Canavan disease
Cerebral Palsy
Child
Clinical Article
conference abstract
Decision Making
disorders of mitochondrial functions
Documentation
Female
Hqli F
Human
Male
Medical Specialist
Monitoring
Nutrition
Pain
Palliative Therapy
Rett syndrome
Santhanam G
School Child
secondary health care
Seizure
Social Care
Spinal Muscular Atrophy
Terminal Care
-
Dublin Core
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Title
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August 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
August 2019 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2019-rcpch.456" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2019-rcpch.456</a>
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Title
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The chameleon project: A children's end of life care quality improvement project: Preliminary results
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
child; child death; human; palliative therapy; controlled study; pediatric intensive care unit; terminal care; bereavement; conference abstract; hospital admission; newborn; questionnaire; documentation; cost control; England; preliminary data; teaching; total quality management
Creator
An entity primarily responsible for making the resource
Haynes S; Kelly N; Turnbull J; Griffin H; Connolly A; Dorsett C; Brown J; Wolff A
Description
An account of the resource
Background As there was no specialist paediatric palliative care team in the region, we made a successful bid to NHS England's Marginal rate Emergency Threshold (MRET) and Readmission Fund for the Chameleon Project1 in 2018. The project has been funded for 12 months to audit and improve children's end of life care across the region. It provides a regional specialist team: consultant paediatrician 2 days a week, clinical nurse specialist 3 days, clinical academic researcher 2 days, network administrator 2 days, 3 paediatricians with expertise in palliative care in each of 3 district general hospitals 0.5 days. Methods The team developed tools to aid identification of children with end of life care needs. These were embedded by weekly attendances by the team at ward rounds and board rounds in the region's hospitals. We also delivered lectures and case based teaching sessions to clinical teams and at regional study days. A bereaved family feedback tool was adapted from ones used by the London Neonatal Network. Children with life limiting conditions who died an expected death in the 12 months of the project were identified from the child death review databases. Numbers of specialist hospital admissions, bed days, and costs were identified. Quality of care will be evaluated from documentation of care plans and post bereavement family feedback questionnaires. Results Compared to the year before the project started, the mean number of non-elective admissions reduced from 2.3 to 1.9; the number of non-elective bed days reduced from 51 to 32; and the number of non-elective bed days on neonatal and paediatric intensive care units reduced from 28 to 20, in the last 12 months of life per child. Quality of care is currently being assessed against NICE Quality Standards QS160.2 Conclusions These preliminary results indicate that a dedicated paediatric palliative care team can reduce admissions and bed days for children in their last year of life. We hope that further analyses will demonstrate improved family experience and cost savings for local NHS providers.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2019-rcpch.456" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-rcpch.456</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).
2019
Archives of Disease in Childhood
August 2019 List
Bereavement
Brown J
Child
Child Death
conference abstract
Connolly A
Controlled Study
Cost Control
Documentation
Dorsett C
England
Griffin H
Haynes S
Hospital Admission
Human
Kelly N
Newborn
Palliative Therapy
Pediatric Intensive Care Unit
preliminary data
Questionnaire
Teaching
Terminal Care
Total Quality Management
Turnbull J
Wolff 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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August 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
August 2019 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2019-rcpch.453" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2019-rcpch.453</a>
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Title
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Where children die: A retrospective analysis of child death overview panel (CDOP) data
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
child; child death; female; human; major clinical study; male; palliative therapy; retrospective study; controlled study; hospice; terminal care; conference abstract; ethnic group; ethnicity; newborn; anonymised data; Asian; British citizen; cancer diagnosis; cause of death; chromosome aberration; congenital malformation; data analysis software; gender; mortality rate; strategic planning
Creator
An entity primarily responsible for making the resource
Hartley D; Renton K; Clarkson L; McKeating C; Lyles L; Mayer A
Description
An account of the resource
Aims There is a statutory requirement to review all child deaths in England. The aim of this study is to collate and evaluate child death data from all Child Death Overview Panels (CDOPs) within a single UK region to inform strategic planning. Methods A retrospective analysis of 3 full years of anonymised data (2013/14 - 2015/16) representing all child deaths (expected and unexpected) collated from all 14 CDOPs in the region. Descriptive analysis was performed using SPSS assessing age (0-17 inclusive), gender, ethnicity, partial postcode, place of death and category of death as assigned following CDOP review. Ethical approval was not required. Missing data was excluded from analysis on a pairwise basis. Results Over the study period there were 1221 deaths, with an average mortality rate of 407 deaths per annum (total child population=1.1 million, 3.5 deaths/10000 children). The major causes of death were perinatal/neonatal events, and chromosomal, genetic and congenital anomalies; Combined these account for 60% (n=712/1183) of the dataset. 'Expected' deaths accounted for 64% (n=730/1149) of all child deaths. Place of death for expected deaths=Hospital deaths: 77% (n=564) Home: 9% (n=67), Hospice: 13% (n=91). When ethnicity data analysed for place of death (excluding neonatal and unexpected deaths), a greater proportion of white British children (n=201) died at home (16%, n=33) or within a hospice (23%, n=47) when compared to Asian children (Home: 12%, n=14; Hospice: 9%, n=10); Chi-squared 15.07, p=0.002. Conclusions Place of Death (PoD), a key quality indicator for end-of-life care, remains within hospital for the majority of children. Both ethnicity and disease type affect PoD, with ethnic minority groups less likely to die at home or hospice. Children with a cancer diagnosis were more likely to die at home, possibly attributable to known availability of a 24 hour/ 7 day outreach care for this group. Local paediatric palliative care services can use the above information to ensure future service developments provide equitable care provision and choices for families. Data limitations include acknowledged individual CDOP panel variations in data collation, including categorisation of cause of death and absence of recording of preferred PoD.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2019-rcpch.453" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-rcpch.453</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).
2019
anonymised data
Archives of Disease in Childhood
Asian
August 2019 List
British citizen
Cancer Diagnosis
Cause Of Death
Child
Child Death
Chromosome Aberration
Clarkson L
conference abstract
Congenital Malformation
Controlled Study
Data Analysis Software
Ethnic Group
Ethnicity
Female
Gender
Hartley D
Hospice
Human
Lyles L
Major Clinical Study
Male
Mayer A
McKeating C
Mortality Rate
Newborn
Palliative Therapy
Renton K
Retrospective Study
strategic planning
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
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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/archdischild-2017-314256" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2017-314256</a>
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Title
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Infant deaths from congenital anomalies: novel use of Child Death Overview Panel data
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Female; Infant; Male; Humans; Retrospective Studies; Newborn; congenital anomaly; ethnicity; Infant Death; infant mortality; Cause of Death; Congenital Abnormalities/mortality; Consanguinity; Death Certificates; Disabled Children; England/epidemiology; Ethnic Groups/statistics & numerical data; Infant Mortality/ethnology; Maternal Age
Creator
An entity primarily responsible for making the resource
Firth C; Petherick E; Oddie SJ
Description
An account of the resource
OBJECTIVE: We aimed to assess Child Death Overview Panel (CDOP) data validity, and cause of death classification, by comparison with information from a local birth cohort study (Born in Bradford, BiB), and another cause of death coding system (causes of death and associated conditions-CODAC). We then aimed to use CDOP data to calculate ethnic-specific infant mortality rates (IMRs), and compare characteristics of infants who died of congenital anomalies (CA) with those who died from other causes (non-CA). DESIGN: Retrospective cohort study. SETTING: Bradford Metropolitan District. PATIENTS: All infant deaths, 2008 to 2013. MAIN OUTCOME MEASURES: Infant mortality rates from CA and non-CA causes. RESULTS: 315 infant deaths were included, 56 of whom were BiB recruits. Agreement between CDOP and BiB was moderate to perfect for all characteristics except ethnicity, which showed weak agreement (kappa=0.58). The same deaths (27/56) were classified as CA by CDOP and CODAC. IMRs (per 1000 live births, 2009-2013) were highest in Pakistani infants (all causes 9.8, CA cause 5.5) compared with white British (all causes 4.3, CA cause 1.3) and other infants (all causes 5.1, CA cause 1.4). In multivariate analysis, infants who died of CA cause were more likely to have been born at term (OR 3.18) and to consanguineous parents (OR 3.28) than infants who died of non-CA cause. CONCLUSIONS: Excess Pakistani mortality appears to be partly explained by an excess of deaths from CA, which in this population appears associated with a greater prevalence of consanguinity.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2017-314256" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-314256</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).
2018
Archives of Disease in Childhood
Cause Of Death
Congenital Abnormalities/mortality
congenital anomaly
Consanguinity
Death Certificates
Disabled Children
England/epidemiology
Ethnic Groups/statistics & numerical data
Ethnicity
Female
Firth C
Humans
Infant
Infant Death
Infant Mortality
Infant Mortality/ethnology
Male
Maternal Age
Newborn
Oddie SJ
Petherick E
Retrospective Studies
September 2019 List
-
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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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April 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
April 2019 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2017-312731" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1136/archdischild-2017-312731</a>
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Individualised advance care planning in children with life-limiting conditions
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Child Health Services/og [Organization & Administration]; Palliative Care/og [Organization & Administration]; Netherlands; Palliative Care/st [Standards]; Quality of Health Care; Male; Practice Guidelines as Topic; Advance Care Planning/og [Organization & Administration]; Parents/px [Psychology]; Child; Humans; Palliative Care/px [Psychology]; Female; Attitude to Health; Pilot Projects; Advance Care Planning/st [Standards]; Child Health Services/st [Standards]; Evidence-Based Medicine/mt [Methods]; Patient Satisfaction/sn [Statistics & Numerical Data]
Creator
An entity primarily responsible for making the resource
Loeffen EAH; Tissing WJE; Schuiling-Otten MA; de Kruiff CC; Kremer L C M; Verhagen AA; Pediatric Palliative Care-Individualized Care Plan Working Group
Description
An account of the resource
INTRODUCTION: In 2013, the Pediatric Association of the Netherlands launched an evidence-based guideline 'Palliative care for children'. To promote implementation in daily practice and hereby improve quality of paediatric palliative care, we aimed to develop a functional individualised paediatric palliative care plan (IPPCP) that covers physical, psychological, spiritual and social functioning, with great emphasis on the guideline's recommendations, advance care planning and patients' and parents' preferences and desires. METHODS: A Dutch working group (28 individuals) with a strong multidisciplinary character developed a draft IPPCP, which was piloted retrospectively and prospectively. In the pilots we completed, the IPPCPs for patients who were recently diagnosed with a life-threatening or life-limiting condition and evaluated completeness, usability and user-friendliness. RESULTS: The final IPPCP comprised five domains: (1) IPPCP data, (2) basics, (3) social, (4) psychosocial and spiritual and (5) physical care. Each domain covered various components. In both pilots, the IPPCP was considered a comprehensive document that covered all areas of paediatric palliative care and was experienced as an improvement to the present situation. However, the current form was regarded to lack user-friendliness. CONCLUSION: We propose a set of essential components of a comprehensive IPPCP for paediatric palliative care with extra attention for advance care planning and anticipatory action. Patients' and parents' preferences and desires are included next to the recommendations of the evidence-based guideline 'Palliative care for children'.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2017-312731" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-312731</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).
2018
Advance Care Planning/og [Organization & Administration]
Advance Care Planning/st [Standards]
April 2019 List
Archives of Disease in Childhood
Attitude To Health
Child
Child Health Services/og [organization & Administration]
Child Health Services/st [Standards]
de Kruiff CC
Evidence-Based Medicine/mt [Methods]
Female
Humans
Kremer L C M
Loeffen EAH
Male
Netherlands
Palliative Care/og [Organization & Administration]
Palliative Care/px [psychology]
Palliative Care/st [standards]
Parents/px [psychology]
Patient Satisfaction/sn [Statistics & Numerical Data]
Pediatric Palliative Care-Individualized Care Plan Working Group
Pilot Projects
Practice Guidelines As Topic
Quality Of Health Care
Schuiling-Otten MA
Tissing WJE
Verhagen AA
-
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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March 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
March 2019 List
URL Address
<a href="http://doi.org/10.1136/goshabs.18" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1136/goshabs.18</a>
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Title
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Talking to parents about their preferences for their child's place of death: A prospective study
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
hospice; government; advanced cancer; major clinical study; prospective study; case study; outcome assessment; hematologic malignancy; solid malignant neoplasm; conference abstract; human; child; female; palliative therapy; patient care; death; multidisciplinary team; clinician; achievement; social aspect
Creator
An entity primarily responsible for making the resource
Henderson E; Peake J; Al-Khabbaz E; Langner R; Dinsdale A; Craig F; Bluebond-Langner M
Identifier
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<a href="http://doi.org/10.1136/goshabs.18" target="_blank" rel="noreferrer noopener"> 10.1136/goshabs.18</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).
Description
An account of the resource
Background Government policy identifies home as the preferred place of death (PPOD) for children and young people (CYP) and suggests a home death as an indicator of the quality of care. A recent systematic review found a lack of compelling evidence for both home as the preferred place of death and the suitability of home death as a quality outcome. Rather, one study suggested that offering a discussion is more important for outcomes. Despite these findings, the achievement of preference remains a common quality measure of paediatric palliative care (PPC) services. This study explored factors which influenced the initiation of discussions, preferences, achievement of preferences and their value as an outcome measure. Methods A prospective case series review was conducted from March 2015-February 2017. Data included: 1) Routinely collected PPC PPOD data for CYP and their parents including the offer of a discussion, preferences expressed and if preference was achieved 2) Field notes taken at multidisciplinary team (MDT) meetings between clinicians where preference was discussed after the child's death 3) Advanced care planning and place of care data extracted from medical notes. Results Data was available for 256 CYP (117 female). 29% of CYP had a solid tumour malignancy, 10% had a haematological malignancy and 61% died of non-malignant disease. Parents of CYP with malignancies were more likely to be offered a discussion of PPOD (60/73 compared to 84/156 of those with non-malignant disease). A hospital was preferred by 38%, home 28% and hospice 18%. Preference for hospital or hospice was more likely to be achieved. Per clinician report, parent preference was influenced by patient condition, continuity of care, family and social factors and availability of services. Conclusion Contrary to government policy and voluntary sector statements home deaths are not preferred by most parents. Achievement of PPOD is unsuitable as a measure of service performance.
2018
achievement
Advanced Cancer
Al-Khabbaz E
Archives of Disease in Childhood
Bluebond-Langner M
Case Study
Child
Clinician
conference abstract
Craig F
Death
Dinsdale A
Female
government
Hematologic Malignancy
Henderson E
Hospice
Human
Langner R
Major Clinical Study
March 2019 List
Multidisciplinary team
outcome assessment
Palliative Therapy
Patient Care
Peake J
Prospective Study
social aspect
solid malignant neoplasm
-
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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March 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
March 2019 List
URL Address
<a href="http://doi.org/10.1136/goshabs.46" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1136/goshabs.46</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/.
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Challenges in receiving research ethics committee approval for studies involving children and young people with life-limiting conditions and life-threatening illnesses: Analysis of research ethics committee minutes and correspondence with principle investigators
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
documentation; scientist; cytochrome P450; endogenous compound; United Kingdom; conference abstract; human; child; peer review; attention; error; research ethics; writing; 9035-51-2 (cytochrome P450)
Creator
An entity primarily responsible for making the resource
Butler A E; Vincent K; Bluebond-Langner M
Identifier
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<a href="http://doi.org/10.1136/goshabs.46" target="_blank" rel="noreferrer noopener"> 10.1136/goshabs.46</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).
Description
An account of the resource
Background Research ethics committees (RECs) are identified as one of the biggest barriers to research with vulnerable populations, such as children and young people with life-limiting conditions or life-threatening illnesses (CYP with LLC/LTI). Despite this, REC concerns for research with this population and their correspondence with principle investigators during the research approval process remains unknown. The aim is to explore the challenges in receiving REC approval for studies involving CYP with LLC/LTIs, focusing on the primary concerns of the REC and the ways these are addressed by the research team. Methods Analysis of REC meeting minutes, REC decision letters, and researcher response letters were conducted for all studies involving CYP with LLC/LTIs reviewed in the United Kingdom between March 2011-2016. Results REC meeting minutes and decision letters were received for 77 studies, with 27 researcher response letters provided. Though most REC concerns were general, relating to participant information sheets, methodological issues, or formatting errors, a number of concerns specific to CYP with LLC/LTIs were also identified, such as the age of consent/ assent or the need to involve clinical teams in recruitment. Overall, RECs raised 279 concerns in their correspondence with investigators, most of which resulted in changes to research methods or documentation. Conclusions Research protocols involving CYP with LLC/LTIs usually require multiple changes before REC approval is given. Many of the main REC concerns, such as formatting issues or insufficient detail, can be easily resolved with attention to detail or peer review prior to submission. Others, such as recruitment methods or consent procedures, require more detailed consideration of study methods to ensure they appropriately consider the needs of CYP with LLC/LTIs. Understanding REC concerns may help researchers consider potential issues more thoroughly before submission, reducing the impact of RECs as a barrier and improving research quality overall.
2018
9035-51-2 (cytochrome P450)
Archives of Disease in Childhood
Attention
Bluebond-Langner M
Butler A E
Child
conference abstract
cytochrome P450
Documentation
Endogenous Compound
error
Human
March 2019 List
Peer Review
research ethics
Scientist
United Kingdom
Vincent K
writing