1
40
28
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Title
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April 2024 List
Text
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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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Title
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When paediatricians and families can't agree
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; 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
-
Dublin Core
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Title
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February 2024 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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February List 2024
URL Address
<a href="http://doi.org/10.1080/07853890.2023.2268093" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/07853890.2023.2268093</a>
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A psychological experience assessment protocol of parent caregivers in paediatric palliative care
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Annals of Medicine
Date
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2023
Subject
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child; adult; article; human; social support; palliative therapy; clinical article; caregiver; parent; Portugal; United Kingdom; therapy; questionnaire; coping behavior; semi structured interview; vulnerability; psychologic assessment; Coping Strategy Questionnaire
Creator
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Nogueira AJ; Ribeiro MT
Description
An account of the resource
Background: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the emergence of an illness, and therefore several studies have tended to focus on the adaptation of parent caregivers. The aim of the present study is to present a psychological experience assessment protocol of parents in PPC. Methods: It consists of a socio-demographic and clinical questionnaire and a semi-structured interview based on an incomplete narrative deriving from the Unwanted Guest Metaphor. Results: On the basis of the latter, 10 dimensions of the experience in the parental subsystem were explored through parents' own perspective, namely: confrontation with the diagnosis; representation of the illness; emotional impact; day-to-day challenges; family impact; resources and social support; coping strategies; posttraumatic growth; representation of the sick child; and future perspectives. Discussion: The protocol can be used in person or remotely and its application enables the identification of specific needs and the establishment of psychotherapeutic goals and strategies for each family, thus enhancing their well-being and resilience, from an eco-systemic perspective. Conclusions: The protocol is presented in detail and its importance in the context of research and systemic intervention in PPC is discussed.
Identifier
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<a href="http://doi.org/10.1080/07853890.2023.2268093" target="_blank" rel="noreferrer noopener">10.1080/07853890.2023.2268093</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
Adult
Annals Of Medicine
Article
Caregiver
Child
Clinical Article
Coping Behavior
Coping Strategy Questionnaire
February List 2024
Human
Nogueira AJ
Palliative Therapy
Parent
Portugal
psychologic assessment
Questionnaire
Ribeiro MT
Semi Structured Interview
Social Support
Therapy
United Kingdom
VULNERABILITY
-
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Title
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September 2023 List
Text
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Citation List Month
September List 2023
URL Address
<a href="http://doi.org/10.12968/bjom.2023.31.7.368%5C"> http://doi.org/10.12968/bjom.2023.31.7.368\</a>"
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Max's legacy: an evaluation of the impacts of baby loss on staff and families
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British Journal of Midwifery
Date
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2023
Subject
The topic of the resource
Female; Descriptive Research; Human; Thematic Analysis; Bereavement; Family Attitudes; Semi-Structured Interview; Abortion, Spontaneous; After Care; Attitude of Health Personnel; Focus Groups; Multimethod Studies; Pregnancy Trimester, First; Pregnancy; Safety; United Kingdom
Creator
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Whitehouse C; Crane R; Rostron H; Cater K
Description
An account of the resource
Background/Aims There is a paucity of literature on the impact of baby loss experiences on family and staff. This study aimed to explore existing support available to families and staff in a UK hospital for first trimester miscarriage, as well as experiences of baby loss, and make recommendations for future care. Methods A mixed-methods service evaluation was conducted. Data were gathered from healthcare professionals (surveys, phase 1; interviews, phase 2) and service users who had experienced baby loss (focus group discussions, phase 3). Qualitative data were analysed thematically, alongside descriptive quantitative results. Results Communication, support, recognition of loss and environment were key contributors to positive and negative experiences for staff and families. Peer support enhanced communication, reduced isolation and increased ability to function on a daily basis following loss. Conclusions Formal, resourced maternity bereavement aftercare services are essential to the support the experiences, outcomes and safety of staff and families experiencing baby loss and miscarriage.
Identifier
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<a href="http://doi.org/10.12968/bjom.2023.31.7.368%5C">10.12968/bjom.2023.31.7.368\</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
Abortion, Spontaneous
After Care
Attitude Of Health Personnel
Bereavement
British Journal of Midwifery
Cater K
Crane R
Descriptive Research
Family Attitudes
Female
Focus Groups
Human
Multimethod Studies
Pregnancy
Pregnancy Trimester, First
Rostron H
Safety
Semi-Structured Interview
September List 2058
Thematic Analysis
United Kingdom
Whitehouse C
-
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Title
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April 2023 List
Text
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Citation List Month
April List 2023
URL Address
<a href="http://doi.org/10.7748/nm.30.1.12.s5" target="_blank" rel="noreferrer noopener"> http://doi.org/10.7748/nm.30.1.12.s5</a>
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Title
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What are virtual wards and how do they work?: primary care nursing roles are being reinvented as virtual ward and hospital at home services evolve
Publisher
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Nursing Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
England; Home Nursing; Palliative Care; Health Services Accessibility; Nurse's Role; Holistic Nursing; Nursing; Hospital Units; Utilization; Community Health Nursing; Remote Consultation; United Kingdom; COVID-19; Nursing Role; Financing Government; Computer Literacy; Frailty Syndrome; Health Care Delivery Integrated; National Health Programs; Pediatric Units; Primary Nursing; Telenursing; Virtual Reality
Creator
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Trueland J
Description
An account of the resource
Virtual wards are expanding in many parts of the UK, with the aim of allowing patients to get the care they need at home, rather than in hospital.
Identifier
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<a href="http://doi.org/10.7748/nm.30.1.12.s5" target="_blank" rel="noreferrer noopener">10.7748/nm.30.1.12.s5</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
April List 2023
Community Health Nursing
Computer Literacy
COVID-19
England
Financing Government
Frailty Syndrome
Health Care Delivery Integrated
Health Services Accessibility
Holistic Nursing
Home Nursing
Hospital Units
National Health Programs
Nurse's Role
Nursing
Nursing Management
nursing role
Palliative Care
Pediatric Units
Primary Nursing
Remote Consultation
Telenursing
Trueland J
United Kingdom
utilization
virtual reality
-
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Title
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April 2023 List
Text
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Citation List Month
April List 2023
URL Address
<a href="http://doi.org/10.1016/j.jnn.2022.01.011" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jnn.2022.01.011</a>
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Title
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George's Lullaby: A Case Study of the Use of Music Therapy to Support Parents and Their Infant on a Palliative Pathway
Publisher
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Journal of Neonatal Nursing
Date
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2022
Subject
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Infant; Intensive Care Units Neonatal; Music Therapy; Utilization; United Kingdom; In Infancy and Childhood; Deficiency; Parent-Infant Bonding; Pulmonary Surfactants
Creator
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Ormston K; Rose E; Gallagher K
Description
An account of the resource
Having an infant diagnosed with a life-limiting condition is a stressful time for parents and has been shown to have an impact on parental mental health. Music Therapy, when provided by an HCPC registered Music Therapist with enhanced Neonatal training, can empower parents to share culturally based, personal music with their infant to assist with developmental care and create precious memories. These positive experiences are vital to hold in order to continue bonds after death and assist in processing grief. This case study presents a full term infant with surfactant deficiency (R192). Weekly Music Therapy was provided on the Neonatal Intensive Care Unit (NICU) with parents and infant following the Rhythm Breath Lullaby: First Sounds approach. It was then used again at the end of the infant's life at the family home. Music Therapy provided a focus for the family while on the unit and supported family integrated developmental care of the infant. The relationship developed, a long with the music shared, then supported the family emotionally and physically as parent's held their baby at end of life. To our knowledge this is the first time Music Therapy has been provided on the NICU through to end of life at home with the same Music Therapist. Music Therapy on Neonatal Unit is uncommon in the UK but has potential to support infant comfort whilst supporting the sharing of parent identities. Music Therapy has the potential to provide a focus that enables parents, who have a heightened awareness of the proximity of loss, to interpret, play and comfort their infant.
Identifier
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<a href="http://doi.org/10.1016/j.jnn.2022.01.011" target="_blank" rel="noreferrer noopener">10.1016/j.jnn.2022.01.011</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
April List 2023
Deficiency
Gallagher K
In Infancy and Childhood
Infant
Intensive Care Units Neonatal
Journal of Neonatal Nursing
Music Therapy
Ormston K
Parent-Infant Bonding
Pulmonary Surfactants
Rose E
United Kingdom
utilization
-
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Title
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September 2022 List
Text
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Citation List Month
September 2022 List
URL Address
<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/02692163221093145</a>
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The Impact of COVID-19 on Palliative Care for Children Within the UK
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Child; Palliative care; United Kingdom; COVID-19; Workload; Vulnerability; Conference abstract; Controlled study; Semi-structured interview
Creator
An entity primarily responsible for making the resource
Scott H; Coombes L; Braybrook D; Roach A; Harardottir D; Bristowe K; Ellis-Smith C; Bluebond-Langner M; Farsides B; Murtagh F; Fraser L; Harding R
Description
An account of the resource
Background/aims: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) represent a group with complex care needs that are met by multiple services and thus may be subject to particular vulnerabilities.
Identifier
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<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">10.1177/02692163221093145</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Bluebond-Langner M
Braybrook D
Bristowe K
Child
conference abstract
Controlled Study
Coombes L
COVID-19
Ellis-Smith C
Farsides B
Fraser L
Harardottir D
Harding R
Murtagh F
Palliative Care
Palliative Medicine
Roach A
Scott H
Semi-Structured Interview
September 2022 List
United Kingdom
VULNERABILITY
workload
-
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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April 2021 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 2021 List
URL Address
<a href="http://doi.org/10.1177/0269216319885566" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319885566</a>
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Insights into the perception that research ethics committees are a barrier to research with seriously ill children: A study of committee minutes and correspondence with researchers studying seriously ill children
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Infant; Adolescent; Child; Female; Humans; Male; Child Preschool; Infant Newborn; Research Design; Terminally Ill; Ethics Committees Research; Human Experimentation/ethics; content analysis; United Kingdom; research; ethics committees
Creator
An entity primarily responsible for making the resource
Butler AE; Vincent K; Bluebond-Langner M
Description
An account of the resource
BACKGROUND: Research ethics committees are commonly perceived as a 'barrier' to research involving seriously ill children. Researchers studying seriously ill children often feel that committees view their applications more harshly compared to applications for research with other populations. Whether or not this is the case in practice is unknown. AIM: The aim of this study was to explore committees' concerns, expectations and decisions for research applications involving seriously ill children submitted for review in the United Kingdom. DESIGN: Content analysis of committee meeting minutes, decision letters and researcher response letters. SETTING/PARTICIPANTS: Chief investigators for National Institute of Health Research portfolio studies involving seriously ill children were contacted for permission to review their study documents. RESULTS: Of the 77 applications included in this study, 57 received requests for revisions at first review. Committee expectations and concerns commonly related to participant information sheets, methodology, consent, recruitment or formatting. Changes were made to 53 of these studies, all of which were subsequently approved. CONCLUSION: Our findings suggest that committees review applications for research involving seriously ill children with the same scrutiny as applications for research with other populations. Yet, the perception that committees act as a barrier to this type of research persists. We suggest that this perception remains due to other factors including, but not limited to, the high levels of formatting or administrative revisions requested by committees or additional study requirements needed for research involving children, such as multiple versions of consent forms or participant information sheets.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216319885566" target="_blank" rel="noreferrer noopener">10.1177/0269216319885566</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adolescent
April 2021 List
Bluebond-Langner M
Butler AE
Child
Child Preschool
Content Analysis
Ethics Committees
Ethics Committees Research
Female
Human Experimentation/ethics
Humans
Infant
Infant Newborn
Male
Palliative Medicine
Research
Research Design
Terminally Ill
United Kingdom
Vincent K
-
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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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December 2020 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
December 2020 List
URL Address
<a href="http://doi.org/10.1093/medlaw/fwz011" target="_blank" rel="noreferrer noopener">http://doi.org/10.1093/medlaw/fwz011</a>
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Title
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Reflecting on 'Hannah's Choice': Using the Ethics of Care to Justify Child Participation in End of Life Decision-Making
Publisher
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Medical Law Review
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Decision Making; Terminally Ill; Child; Children; Decision-Making; End-of-Life; Ethics of Care; Female; Gillick Competence; Guidelines as Topic; Humans; Informed Consent By Minors/ethics/legislation & jurisprudence; Mental Competency/legislation & jurisprudence; Palliative Care/ethics; Parents; Personal Autonomy; Terminal Care/ethics; Treatment Refusal; Treatment Refusal/ethics/legislation & jurisprudence; United Kingdom
Creator
An entity primarily responsible for making the resource
Moreton KL
Description
An account of the resource
It has been ten years since the case of Hannah Jones-the 12-year-old girl who was permitted to refuse a potentially life-saving heart transplant. In the past decade, there has been some progress within law and policy in respect of children's participatory rights (UNCRC-Article 12), and a greater understanding of family-centred decision-making. However, the courts still largely maintain their traditional reluctance to find children Gillick competent to refuse medical treatment. In this article, I revisit Hannah's case through the narrative account provided by Hannah and her mother, to ascertain what lessons can be learnt. I use an Ethics of Care framework specially developed for children in mid-childhood, such as Hannah, to argue for more a creative and holistic approach to child decision-making in healthcare. I conclude that using traditional paradigms is untenable in the context of palliative care and at the end of life, and that the law should be able to accommodate greater, and even determinative, participation of children who are facing their own deaths.
Identifier
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<a href="http://doi.org/10.1093/medlaw/fwz011" target="_blank" rel="noreferrer noopener">10.1093/medlaw/fwz011</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Child
Children
December 2020 List
Decision Making
Decision-making
end-of-life
Ethics of Care
Female
Gillick Competence
Guidelines As Topic
Humans
Informed Consent By Minors/ethics/legislation & jurisprudence
Medical Law Review
Mental Competency/legislation & jurisprudence
Moreton KL
Palliative Care/ethics
Parents
Personal Autonomy
Terminal Care/ethics
Terminally Ill
Treatment Refusal
Treatment Refusal/ethics/legislation & jurisprudence
United Kingdom
-
Dublin Core
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Title
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October 2020 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 2020 List
URL Address
<a href="http://doi.org/10.1016/j.annals.2020.102900" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.annals.2020.102900</a>
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Title
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When a child is sick: the role of social tourism in palliative and end-of-life care
Publisher
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Annals of Tourism Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
animals; Britain; British Isles; child care; childhood diseases; children; Chordata; Commonwealth of Nations; Developed Countries; emotions; eukaryotes; Europe; European Union Countries; health care; health policy; Hominidae; Homo; mammals; man; OECD Countries; primates; social tourism; UK; United Kingdom; vertebrates; Western Europe
Creator
An entity primarily responsible for making the resource
Hunter-Jones P; Sudbury-Riley L; Al-Abdin A; Menzies L; Neary K
Description
An account of the resource
Drawing upon transformative service research and social tourism literature, this paper explores the relationship between respite care and childhood illness. It focuses specifically upon the short break opportunities attached to respite care offered in children's hospices in the United Kingdom. Pathographies (illness narratives), shared by patients, siblings and family (n = 23), provide unique insights into ways in which each participate in respite care. Participation prompts inclusivity and normality. It offers a break from illness, and contributes to uplifting feelings of optimism, escapism and new beginnings. Conclusions drawn argue the need for healthcare policy to move beyond 'Dying Well' narratives into ones which celebrate 'Living Well with Dying'. Tourism participation has much to offer such a progressive healthcare policy.
Identifier
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<a href="http://doi.org/10.1016/j.annals.2020.102900" target="_blank" rel="noreferrer noopener">10.1016/j.annals.2020.102900</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Al-Abdin A
Animals
Annals of Tourism Research
Britain
British Isles
Child Care
childhood diseases
Children
Chordata
Commonwealth of Nations
Developed Countries
Emotions
Eukaryotes
Europe
European Union Countries
Health Care
Health Policy
Hominidae
Homo
Hunter-Jones P
Mammals
Man
Menzies L
Neary K
October 2020 List
OECD Countries
Primates
social tourism
Sudbury-Riley L
UK
United Kingdom
Vertebrates
Western Europe
-
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 2020 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 2020 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2017-313480" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2017-313480</a>
Dublin Core
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Title
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Ethics and patient and public involvement with children and young people
Publisher
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Archives of Disease in Childhood - Education and Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Humans; Adolescent; Child; Female; Male; Middle Aged; Adult; Guidelines as Topic; Patient Participation/px [Psychology]; United Kingdom; Research Personnel/px [Psychology]; Health Services Research/es [Ethics]; Health Services Research/st [Standards]; Patient Participation/sn [Statistics & Numerical Data]; Research Design/st [Standards]; Research Personnel/es [Ethics]; Research Personnel/st [Standards]
Creator
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Mitchell S J; Slowther A; Coad J; Akhtar S; Hyde E; Khan D; Dale J
Description
An account of the resource
Patient and public involvement (PPI) is important both in research and in quality improvement activities related to healthcare services . While PPI activities do not require formal ethical approval, they can raise a number of ethical concerns, through the introduction of complex technical medical concepts, challenging language or sensitive subject areas. There is very little published literature to guide ethical practice in this area. We have been conducting PPI with children and young people throughout a research study in paediatric palliative care. PPI started during the application process and continued to guide and shape the research as it progressed. Ethical issues can arise at any time in PPI work. Although many can be predicted and planned for, the nature of PPI means that researchers can be presented with ideas and concepts they had not previously considered, requiring reflexivity and a reactive approach. This paper describes how we considered and addressed the potential ethical issues of PPI within our research. The approach that emerged provides a framework that can be adapted to a range of contexts and will be of immediate relevance to researchers and clinicians who are conducting PPI to inform their work. Copyright © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2019. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2017-313480" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-313480</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
Adolescent
Adult
Akhtar S
Archives of Disease in Childhood - Education and Practice
August 2020 List
Child
Coad J
Dale J
Female
Guidelines As Topic
Health Services Research/es [Ethics]
Health Services Research/st [Standards]
Humans
Hyde E
Khan D
Male
Middle Aged
Mitchell S J
Patient Participation/px [Psychology]
Patient Participation/sn [Statistics & Numerical Data]
Research Design/st [Standards]
Research Personnel/es [Ethics]
Research Personnel/px [Psychology]
Research Personnel/st [Standards]
Slowther A
United Kingdom
-
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 2020 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 2020 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2017-314525" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2017-314525</a>
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Title
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Fifteen-minute consultation: Not the whole story-considering children's spirituality and advance care planning
Publisher
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Archives of Disease in Childhood - Education and Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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Humans; Adolescent; Child; Female; Male; Middle Aged; palliative care; Attitude to Death; Preschool; Adult; Attitude to Health; Spirituality; Practice Guidelines as Topic; Pediatrics/*standards; Advance Care Planning/*standards; United Kingdom; Family/*psychology; paediatric practice; Palliative Care/*psychology/*standards
Creator
An entity primarily responsible for making the resource
Clayton M; Aldridge J
Description
An account of the resource
In a society of diverse views, faiths and beliefs, what can paediatric palliative care contribute to our understanding of children's spirituality? By failing to recognise and respond to their spirituality in this work, we risk missing something of profound importance to children and their families. We overlook their search for wholeness in the absence of cure and fall short of offering truly holistic care. This paper explores how developments in advance care planning and related documentation are addressing these issues. Since children's spirituality is elusive and rarely explored in practice, it aims to clarify our understanding of it with a variety of examples and contains suggestions for hearing the voice of the child amid the needs of parents and professionals.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2017-314525" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-314525</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
Adolescent
Adult
Advance Care Planning/*standards
Aldridge J
Archives of Disease in Childhood - Education and Practice
Attitude To Death
Attitude To Health
August 2020 List
Child
Clayton M
Family/*psychology
Female
Humans
Male
Middle Aged
Paediatric Practice
Palliative Care
Palliative Care/*psychology/*standards
Pediatrics/*standards
Practice Guidelines As Topic
Preschool
Spirituality
United Kingdom
-
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Title
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July 2020 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 2020 List
URL Address
<a href="http://doi.org/10.1007/s12028-020-00997-1" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s12028-020-00997-1</a>
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Title
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Integration of Routine Parental Request of Organ Donation in End-of-Life Care of Children with Neurologic Disorders in the UK: Unresolved Medical, Legal, Cultural, and Religious Challenges
Publisher
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Neurocritical care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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children; end-of-life care; opt-out system; organ donation; pediatrics; practice guidelines; presumed consent; UK; United Kingdom
Creator
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Rady M Y
Description
An account of the resource
The UK adopted the opt-out system (deemed or presumed consent) in end-of-life organ donation enforceable in May 2020. Presumed consent applies to adults but not children. Transplant advocates have recommended that all children on end-of-life care should be referred for potential organ donation to increase the supply of transplantable organs in the UK. To buttress this objective, a UK survey of parents of deceased children mostly with neurologic disorders secondary to severe brain injuries recommended the integration of routine parental discussion of donation regardless of donation eligibility in end-of-life care. Donation discussions emphasize the utility and suitability of organs in dying children for transplantation to maximize consent rate. To ensure that this recommendation does not harm children and parents, contemporary medical, legal, cultural, and religious challenges to end-of-life organ donation should be disclosed in parental discussion of donation and resolved appropriately. To that effect, it is urged that: (1) practice guidelines for the diagnosis and treatment of neurologic disorders secondary to severe brain injuries in children are updated and aligned with recent advances in neuroscience to eliminate potential errors from premature treatment discontinuation and/or incorrect diagnosis of death by brain(stem) criteria, (2) transparent and non-biased disclosure of all empiric information when discussing donation to ensure informed parental decision-making, and (3) a societal dialogue is conducted on the legal, cultural, and religious consequences of integration of routine donation discussion and referral in end-of-life care of children in the UK.
Identifier
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<a href="http://doi.org/10.1007/s12028-020-00997-1" target="_blank" rel="noreferrer noopener">10.1007/s12028-020-00997-1</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
Children
End-of-life Care
July 2020 List
Neurocritical care
opt-out system
Organ Donation
Pediatrics
Practice Guidelines
presumed consent
Rady M Y
UK
United Kingdom
-
Dublin Core
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Title
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July 2020 List
Text
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Citation List Month
July 2020 List
URL Address
<a href="http://doi.org/10.1111/dmcn.14411" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.14411</a>
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End of life care in PICU across the UK
Publisher
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Developmental Medicine and Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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end-of-life care; pediatric intensive care unit; PICU; UK; United Kingdom
Creator
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Huey R; Jennings J; Maxwell V; Richardson J
Description
An account of the resource
Objective: The care provided in the time surrounding the death of a child shapes long-term memories and has potential to impact on the grieving process. There are no specific guidelines for PICU staff in relation to what good care looks like at this time. We sought insight into practice across the UK to build an evidence base, improve care provided and share good practice. Method(s): A 10 question, anonymous, Likert survey was developed. The questions included: facilities available; Advance Care Plans; communication; patient transfer to home/hospice; follow-up for families; and training and support for staff. PICS Study Group disseminated the questionnaire to PICUs across the UK. Result(s): We received responses from 21/30 PICUs contacted (RR 70%). Around 60% of PICUs have a designated cubicle for end-of-life care. Only 21% have ACPs in place for lifelimited patients admitted to PICU. 79% stated relatively low uptake of hospice/home transfer for end-of-life care. 65% of units have Palliative Care Nurses coordinating care. Staff training is low, with no specific training in 30%. 55% provide a bereavement care pathway. Staff debrief only occurs in 50%. Conclusion(s): From the survey feedback, we found this was an area that all units believe can be improved. In relation to ACPs, we hope this will be more widely introduced. We know that 60% of patients admitted to PICU are life limited. These difficult conversations with family help guide management, understand wishes, and formal documentation ensures all staff are aware. Several units with higher uptake of hospice/home care found early conversations with families beneficial. Units with a dedicated palliative nurse stated this allowed more time with families. We believe this should become a standard of care. Staff training is limited in most units. For something so difficult and frequently encountered, it is vital we equip staff better.
Identifier
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<a href="http://doi.org/10.1111/dmcn.14411" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14411</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
Developmental Medicine and Child Neurology
End-of-life Care
Huey R
Jennings J
July 2020 List
Maxwell V
Pediatric Intensive Care Unit
Picu
Richardson J
UK
United Kingdom
-
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Title
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June 2020 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
June 2020 List
URL Address
<a href="http://doi.org/10.1016/j.paed.2020.01.002" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.paed.2020.01.002</a>
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Title
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Palliative care in the neonatal intensive care unit
Publisher
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Paediatrics & Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Health Services Accessibility; Home Health Care; Hospice Care; Intensive Care Units; Multidisciplinary Care Team; Neonatal; Palliative Care; Pediatricians; Perinatal Care; Perinatal Death – Psychosocial Factors; Prenatal Diagnosis; Psychosocial; Support; United Kingdom
Creator
An entity primarily responsible for making the resource
Jackson C; Vasudevan C
Description
An account of the resource
With increasing facilities for antenatal diagnosis, lowering gestation for intiation of intensive care, palliative care in the perinatal period is increasingly recognized as a specialist area. There have been standards and pathways developed in the UK that provides guidance to health professionals. Providing holistic perinatal palliative care depends on close multiprofessional working between the neonatal team and the palliative care professionals who are being integrated into the core neonatal services. Even though most neonates will continue to receive end of life care within the NICU, there are increasing number of families who choose to have end of life care either at home or a hospice. There is a need to develop services across the regions to provide equitable access to excellent clinical care as well as ongoing support to families following loss of a neonate. This short article explores the issues raised in the provision of palliative care in the perinatal period and offers practical guidance for paediatricians in this emerging area.
Identifier
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<a href="http://doi.org/10.1016/j.paed.2020.01.002" target="_blank" rel="noreferrer noopener">10.1016/j.paed.2020.01.002</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Health Services Accessibility
Home Health Care
Hospice Care
Intensive Care Units
Jackson C
June 2020 List
Multidisciplinary Care Team
Neonatal
Paediatrics & Child Health
Palliative Care
Pediatricians
Perinatal Care
Perinatal Death – Psychosocial Factors
Prenatal Diagnosis
psychosocial
Support
United Kingdom
Vasudevan C
-
Dublin Core
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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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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
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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>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
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
-
Dublin Core
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Title
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September 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2018 List
URL Address
<a href="http://doi.org/10.1136/bmjopen-2017-018266" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjopen-2017-018266</a>
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The journey through care: study protocol for a longitudinal qualitative interview study to investigate the healthcare experiences and preferences of children and young people with life-limiting and life-threatening conditions and their families in the West Midlands, UK
Publisher
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BMJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Family/px [Psychology]; Palliative Care/es [Ethics]; Palliative Care/mt [Methods]; Patient Preference/px [Psychology]; Adolescent; Child; Female; Humans; Longitudinal Studies; Male; Preschool; Qualitative Research; Quality of Health Care/og [Organization & Administration]; Research Design; United Kingdom
Creator
An entity primarily responsible for making the resource
Mitchell S; Slowther AM; Coad J; Dale J
Description
An account of the resource
INTRODUCTION: The number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their conditions are often complex and highly unpredictable. Palliative care is advocated for people with life-limiting and life-threatening conditions, but these services for children are highly variable in terms of availability and scope. Little is known about the lived experiences and preferences of children and their families in terms of the palliative care that they do, or do not, receive. This study aims to produce an in-depth insight into the experiences and preferences of such children and families in order to develop recommendations for the future provision of services. The study will be carried out in the West Midlands, UK. METHODS AND ANALYSIS: A qualitative study comprising longitudinal interviews over a 12-month period with children (aged 5-18 years) living with life-limiting or life-threatening conditions and their family members. Data analysis will start with thematic analysis, followed by narrative and cross-case analysis to examine changing experiences and preferences over time, at the family level and within the wider healthcare system. Patient and public involvement (PPI) has informed the design and conduct of the study. Findings will be used to develop recommendations for an integrated model of palliative care for children in partnership with the patient and public involvement (PPI) group. ETHICS AND DISSEMINATION: Ethical approval was granted in September 2016 by the National Health Service Health Research Authority (IRAS ID: 196816, REC reference: 16/WM/0272). Findings will be of immediate relevance to healthcare providers, policy-makers, commissioners and voluntary sector organisations in the UK and internationally. Reports will be prepared for these audiences, as well as for children and their families, alongside academic outputs.
Identifier
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<a href="http://doi.org/10.1136/bmjopen-2017-018266" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2017-018266</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.
2018
Adolescent
Bmj Open
Child
Coad J
Dale J
Family/px [psychology]
Female
Humans
Longitudinal Studies
Male
Mitchell S
October 2018 List
Palliative Care/es [Ethics]
Palliative Care/mt [methods]
Patient Preference/px [Psychology]
Preschool
Qualitative Research
Quality of Health Care/og [Organization & Administration]
Research Design
September 2018 List
Slowther AM
United Kingdom
-
Dublin Core
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Title
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August 2018 List
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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).
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 2018 List
URL Address
<a href="http://doi.org/10.1017/s0963180117000767" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/s0963180117000767</a>
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Quality of Living and Dying: Pediatric Palliative Care and End-of-Life Decisions in the Netherlands
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Cambridge Quarterly of Healthcare Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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Decision Making; Child; Netherlands; Medical Futility; Suicide; United Kingdom; Palliative Care In Infancy and Childhood Netherlands; Practice Guidelines United Kingdom; Terminal Care In Infancy and Childhood Netherlands; Assisted Legislation and Jurisprudence Netherlands; Clinical In Infancy and Childhood Netherlands
Creator
An entity primarily responsible for making the resource
Brouwer M; Maeckelberghe ELS; De Weerd W; Verhagen E
Description
An account of the resource
In 2002, The Netherlands continued its leadership in developing rules and jurisdiction regarding euthanasia and end-of-life decisions by implementing the Euthanasia Act, which allows euthanasia for patients 12 years of age and older. Subsequently, in 2005, the regulation on active ending of life for newborns was issued. However, more and more physicians and parents have stated that the age gap between these two regulations-children between 1 and 12 years old-is undesirable. These children should have the same right to end their suffering as adults and newborn infants. An extended debate on pediatric euthanasia ensued, and currently the debate is ongoing as to whether legislation should be altered in order to allow pediatric euthanasia. An emerging major question regards the active ending of life in the context of palliative care: How does a request for active ending of life relate to the care that is given to children in the palliative phase? Until now, the distinction between palliative care and end-of-life decisions continues to remain unclear, making any discussion about their mutual in- and exclusiveness hazardous at best. In this report, therefore, we aim to provide insight into the relationship between pediatric palliative care and end-of-life decisions, as understood in the Netherlands. We do so by first providing an overview of the (legal) rules and regulations regarding euthanasia and active ending of life, followed by an analysis of the relationship between these two, using the Dutch National Guidelines for Palliative Care for Children. The results of this analysis revealed two major and related features of palliative care and end-of-life decisions for children: (1) palliative care and end-of-life decisions are part of the same process, one that focuses both on quality of living and quality of dying, and (2) although physicians are seen as ultimately responsible for making end-of-life decisions, the involvement of parents and children in this decision is of the utmost importance and should be regarded as such.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/s0963180117000767" target="_blank" rel="noreferrer noopener">10.1017/s0963180117000767</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
Assisted Legislation and Jurisprudence Netherlands
August 2018 List
Brouwer M
Cambridge Quarterly of Healthcare Ethics
Child
Clinical In Infancy and Childhood Netherlands
De Weerd W
Decision Making
Maeckelberghe ELS
Medical Futility
Netherlands
Palliative Care In Infancy and Childhood Netherlands
Practice Guidelines United Kingdom
Suicide
Terminal Care In Infancy and Childhood Netherlands
United Kingdom
Verhagen E
-
Dublin Core
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Title
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October 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2018 List
URL Address
<a href="http://doi.org/10.1080/13548506.2018.1434215" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1080/13548506.2018.1434215</a>
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Title
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Bittersweet: a qualitative exploration of mothers' experiences of raising a single surviving twin
Publisher
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Psychology, Health & Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Bereavement; Conceptual Framework; Facebook; Family Coping; Grief; Human; Maternal Attitudes; Maternal Role; Multiple Offspring; Narratives; Parenting; Psychosocial; Qualitative Studies; Self Concept; Social Identity; Support; Surveys; Thematic Analysis; Twins; United Kingdom
Creator
An entity primarily responsible for making the resource
Jordan A; Smith P; Rodham K
Description
An account of the resource
Loss of a child from a multiple birth pregnancy is not uncommon yet the idiographic experience of parents who have lost a single twin from a multiple birth pregnancy is underexplored. This novel study sought to explore the experiences of mothers bereaved after loss of a twin from a multiple birth pregnancy, focusing on the dual challenges of parenting and grieving. Eighteen mothers at least 12 months post loss were recruited from a private UK based Facebook page dedicated to supporting parents after loss from a multiple birth. Eligible mothers completed an independent qualitative open-ended survey to explore maternal experiences of loss. Data were analysed using Thematic Analysis. Findings represented a sense of duality for participants, with mothers experiencing conflict between roles and identities as well as the nature of their loss. Key themes identified include 'Narrating a story of family and loss', 'Finding a place for the twins within the family' and 'A changing sense of self'. Findings fit with theoretical conceptualisations of bereavement that acknowledge retaining relationships with the deceased. Practically, suggestions for supporting mothers to identify stock answers to often asked questions about family make up were suggested.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/13548506.2018.1434215" target="_blank" rel="noreferrer noopener">10.1080/13548506.2018.1434215</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
Bereavement
Conceptual Framework
Facebook
Family Coping
Grief
Human
Jordan A
Maternal Attitudes
Maternal Role
Multiple Offspring
Narratives
Parenting
Psychology, Health & Medicine
psychosocial
Qualitative Studies
Rodham K
Self Concept
September 2018 List
Smith P
Social Identity
Support
surveys
Thematic Analysis
Twins
United Kingdom
-
Dublin Core
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Title
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October 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2018 List
URL Address
<a href="http://doi.org/10.1111/jan.13702" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1111/jan.13702</a>
Dublin Core
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Title
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Meeting the needs of young adults with life-limiting conditions: A UK survey of current provision and future challenges for hospices
Publisher
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Journal of Advanced Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Adult; Content Analysis; Convenience Sample; Cross Sectional Studies; Data Analysis Software; Descriptive Research; Descriptive Statistics; Health Services Needs and Demand; Hospice Care; Human; Terminally Ill Patients -- In Adulthood; Thematic Analysis; United Kingdom; Young Adult
Creator
An entity primarily responsible for making the resource
Knighting K; Bray L; Downing J; Kirkcaldy AJ; Mitchell TK; O'Brien MR; Pilkington M; Jack Barbara A
Description
An account of the resource
AIM: The aim of this study was to seek views of UK children's and adult hospices on the availability and challenges of providing services for young adults with life-limiting conditions. BACKGROUND: Internationally, there are a growing number of young adults with life-limiting conditions and/or complex needs which are degenerative, progressive and diverse and involve complex life-long symptom, medication management as well as palliative care. There are 55,721 young adults, aged 18-40 in England, which continues to increase. The hospice sector is experiencing demands to extend services for this population despite concerns about the appropriateness of adult hospices and their nursing staff to provide care for the complex and unfamiliar conditions of this patient group. Evidence is needed of hospices' views and the main challenges faced providing services for young adults. DESIGN: Descriptive cross-sectional survey. METHODS: xChildren and adult hospices completed an online survey exploring service provision and their views of respite care for young adults with life-limiting conditions from 18 years old and onward. Data were collected between October 2015 - February 2016. FINDINGS: Respondents (N = 76 hospices) reported that children's hospices predominantly provided short breaks and end-of-life care; adult hospices provided mainly symptom management, end-of-life care and day services. Main challenges were lack of existing adult respite services; lack of funding and capacity; lack of a skilled workforce in adult hospices; and the need for better integrated service provision. CONCLUSION: Examples of good collaborative working were reported. With an increasing population of young adults and pressure on families, it is vital that services work together to find sustainable solutions to the challenges.
Identifier
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<a href="http://doi.org/10.1111/jan.13702" target="_blank" rel="noreferrer noopener">10.1111/jan.13702</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
Adult
Bray L
Content Analysis
Convenience Sample
Cross Sectional Studies
Data Analysis Software
Descriptive Research
Descriptive Statistics
Downing J
Health Services Needs And Demand
Hospice Care
Human
Jack Barbara A
Journal Of Advanced Nursing
Kirkcaldy AJ
Knighting K
Mitchell TK
O'Brien MR
Pilkington M
September 2018 List
Terminally Ill Patients -- In Adulthood
Thematic Analysis
United Kingdom
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
February 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2018 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2017-313544" target="_blank" rel="noreferrer">http://doi.org/10.1136/archdischild-2017-313544</a>
Dublin Core
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Title
A name given to the resource
Impact of child death on paediatric trainees
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
2018
Subject
The topic of the resource
Attitude to Death; Acute/ epidemiology; Adult; Child; Death; Female; Humans; Intensive Care; Internship and Residency; Male; Middle Aged; Occupational Health; Only Child; Palliative Care; Pediatrics; Physicians/ psychology; Post-traumatic; Post-Traumatic/ epidemiology; Prevalence; Psychology; Stress Disorders; Surveys and Questionnaires; Traumatic; United Kingdom
Creator
An entity primarily responsible for making the resource
Hollingsworth CE; Wesley C; Huckridge J; Finn GM; Griksaitis MJ
Description
An account of the resource
OBJECTIVE: To assess the prevalence of symptoms of acute stress reactions (ASR) and post-traumatic stress disorder (PTSD) in paediatric trainees following their involvement in child death. DESIGN: A survey designed to identify trainees' previous experiences of child death combined with questions to identify features of PTSD. Quantitative interpretation was used alongside a chi(2) test. A p value of <0.05 was considered significant. SETTING: 604 surveys were distributed across 13 UK health education deaneries. PARTICIPANTS: 303/604 (50%) of trainees completed the surveys. RESULTS: 251/280 (90%) of trainees had been involved with the death of a child, although 190/284 (67%) had no training in child death. 118/248 (48%) of trainees were given a formal debrief session following their most recent experience. 203/251 (81%) of trainees reported one or more symptoms or behaviours that could contribute to a diagnosis of ASR/PTSD. 23/251 (9%) of trainees met the complete criteria for ASR and 13/251 (5%) for PTSD. Attending a formal debrief and reporting feelings of guilt were associated with an increase in diagnostic criteria for ASR/PTSD (p=0.036 and p<0.001, respectively). CONCLUSIONS: Paediatric trainees are at risk of developing ASR and PTSD following the death of a child. The feeling of guilt should be identified and acknowledged to allow prompt signposting to further support, including psychological assessment or intervention if required. Clear recommendations need to be made about the safety of debriefing sessions as, in keeping with existing evidence, our data suggest that debrief after the death of a child may be associated with the development of symptoms suggestive of ASR/PTSD.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2017-313544" target="_blank" rel="noreferrer">10.1136/archdischild-2017-313544</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
Acute/ epidemiology
Adult
Archives of Disease in Childhood
Attitude To Death
Child
Death
February 2018 List
Female
Finn GM
Griksaitis MJ
Hollingsworth CE
Huckridge J
Humans
Intensive Care
Internship And Residency
Male
Middle Aged
Occupational Health
Only Child
Palliative Care
Pediatrics
Physicians/ psychology
Post-traumatic
Post-Traumatic/ epidemiology
Prevalence
Psychology
Stress Disorders
Surveys And Questionnaires
Traumatic
United Kingdom
Wesley C
-
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
December 2017 List
URL Address
<a href="http://doi.org/10.1001/jama.2017.10410" target="_blank" rel="noreferrer">http://doi.org/10.1001/jama.2017.10410</a>
Notes
<p>Truog, Robert D<br />2645763</p>
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
The United Kingdom Sets Limits on Experimental Treatments: The Case of Charlie Gard
Publisher
An entity responsible for making the resource available
Jama
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Health Care Rationing/es [ethics]; Mitochondrial Encephalomyopathies/th [therapy]; Patient Transfer/lj [legislation & Jurisprudence]; State Medicine/lj [legislation & Jurisprudence]; Therapies Investigational/ec [economics]; Evidence-based Medicine; Health Care Rationing/ec [economics]; Health Care Rationing/lj [legislation & Jurisprudence]; Humans; Infant; Male; Mitochondrial Encephalomyopathies/ec [economics]; Palliative Care; Patient Transfer/ec [economics]; State Medicine/ec [economics]; State Medicine/es [ethics]; United Kingdom
Creator
An entity primarily responsible for making the resource
Truog RD
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jama.2017.10410" target="_blank" rel="noreferrer">10.1001/jama.2017.10410</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
December 2017 List
Evidence-based Medicine
Health Care Rationing/ec [economics]
Health Care Rationing/es [ethics]
Health Care Rationing/lj [legislation & Jurisprudence]
Humans
Infant
JAMA
Male
Mitochondrial Encephalomyopathies/ec [economics]
Mitochondrial Encephalomyopathies/th [therapy]
Palliative Care
Patient Transfer/ec [economics]
Patient Transfer/lj [legislation & Jurisprudence]
State Medicine/ec [economics]
State Medicine/es [ethics]
State Medicine/lj [legislation & Jurisprudence]
Therapies Investigational/ec [economics]
Truog RD
United Kingdom
-
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
December 2017 List
URL Address
<a></a> <a href="http://doi.org/10.12968/bjon.2017.26.15.894" target="_blank" rel="noreferrer">http://doi.org/10.12968/bjon.2017.26.15.894</a>
Notes
<p>Using Smart Source Parsing<br />( (pp Date of Publication: 10 Aug 2017</p>
Dublin Core
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Title
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The role of the courts in disagreements over the care of seriously ill babies
Publisher
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British Journal Of Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Experimental Therapy; Hospitalized Child; Legislation And Jurisprudence; Human; Infant; Long Term Care; Newborn; Terminal Care; Treatment Outcome; United Kingdom
Creator
An entity primarily responsible for making the resource
Griffith R
Description
An account of the resource
Richard Griffith, Senior Lecturer in Health Law at Swansea University, reviews how the courts assist in settling disputes over the care of seriously ill babies and describes the test used to inform decisions about their treatment.
Identifier
An unambiguous reference to the resource within a given context
<a></a> <a href="http://doi.org/10.12968/bjon.2017.26.15.894" target="_blank" rel="noreferrer">10.12968/bjon.2017.26.15.894</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
British Journal Of Nursing
December 2017 List
Experimental Therapy
Griffith R
Hospitalized Child
Human
Infant
Legislation And Jurisprudence
Long Term Care
Newborn
Terminal Care
Treatment Outcome
United Kingdom
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2017 List
URL Address
<a class="doi" href="https://doi.org/10.1016/j.paed.2017.08.001" target="_blank" title="Persistent link using digital object identifier" rel="noreferrer">https://doi.org/10.1016/j.paed.2017.08.001</a>
Notes
<p>Using Smart Source Parsing<br />Date of Publication: 2017</p>
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 holistic, specialist palliative care services to children - one paediatricians experience working in a children's hospice
Publisher
An entity responsible for making the resource available
Paediatrics And Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Hospice; Palliative Therapy; Pediatrician; Child; Human; United Kingdom
Creator
An entity primarily responsible for making the resource
Hunter M
Description
An account of the resource
The specialist provision of paediatric palliative care is a relatively new discipline. This article will review the epidemiology of paediatric palliative care and will discuss the current delivery of this care within the United Kingdom. The author will describe the nature of work within a children's hospice and in particular the role of a paediatrician working within this setting.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1016/j.paed.2017.08.001" target="_blank" rel="noreferrer">10.1016/j.paed.2017.08.001</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Child
Hospice
Human
Hunter M
November 2017 List
Paediatrics And Child Health
Palliative Therapy
Pediatrician
United Kingdom
-
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 2017 List
URL Address
<a href="https://journals.rcni.com/nursing-standard/in-palliative-care-we-help-children-make-memories-ns.31.16-18.38.s44">https://journals.rcni.com/nursing-standard/in-palliative-care-we-help-children-make-memories-ns.31.16-18.38.s44</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
'In Palliative Care We Help Children Make Memories'
Publisher
An entity responsible for making the resource available
Nursing Standard
Date
A point or period of time associated with an event in the lifecycle of the resource
1987
Subject
The topic of the resource
Pediatric Nursing; Psychology; Child; Human; Nurse; Palliative Therapy; Patient Comfort; Social Welfare; United Kingdom
Creator
An entity primarily responsible for making the resource
Cole E
Description
An account of the resource
The charity Together for Short Lives has launched a campaign to encourage nurses to consider a role in children's palliative care in the voluntary sector, to prevent any further reduction in services for this already vulnerable group.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://journals.rcni.com/nursing-standard/in-palliative-care-we-help-children-make-memories-ns.31.16-18.38.s44">10.7748/ns.31.16-18.38.s44</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).
1987
Child
Cole E
Human
Nurse
Nursing Standard
Palliative Therapy
Patient Comfort
Pediatric Nursing
Psychology
September 2017 List
Social Welfare
United Kingdom
-
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 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Development Of Research Priorities In Paediatric Pain And Palliative Care
Publisher
An entity responsible for making the resource available
British Journal Of Pain
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Chronic Pain; Palliative Therapy; Research Priority; Awareness; Child; Clinical Research; Clinical Study; Clinical Trial; Data Base; Exercise; Gabapentin; Human; Nonsteroid Antiinflammatory Agent; Opiate; Pharmacokinetics; Postoperative Pain; Safety; Symptom; Uncertainty; United Kingdom
Creator
An entity primarily responsible for making the resource
Liossi C; Anderson AK; Howard R
Identifier
An unambiguous reference to the resource within a given context
10.1177/2049463716668906
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Anderson AK
April 2017 List
Awareness
British Journal of Pain
Child
Chronic Pain
Clinical Research
Clinical Study
Clinical Trial
Data Base
Exercise
Gabapentin
Howard R
Human
Liossi C
Nonsteroid Antiinflammatory Agent
Opiate
Palliative Therapy
Pharmacokinetics
Postoperative Pain
Research Priority
Safety
Symptom
Uncertainty
United Kingdom
-
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 2017 List
Notes
<p>Evans, Nick</p>
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
Updated Perinatal Palliative Standards Emphasise Choice And Bereavement Support
Publisher
An entity responsible for making the resource available
Nursing Children And Young People
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Bereavement; Palliative Care/st [standards]; Perinatal Death; Female; Humans; Infant Newborn; Neonatal Nursing; Palliative Care/ma [manpower]; Practice Guidelines As Topic; Pregnancy; United Kingdom
Creator
An entity primarily responsible for making the resource
Evans N
Description
An account of the resource
Ana Todorovic's baby, Nadia, died just before birth. Ana says she received excellent care and was told when 37 weeks pregnant that Nadia was not going to survive for long.
Identifier
An unambiguous reference to the resource within a given context
10.7748/ncyp.29.5.8.s8
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Bereavement
Evans N
Female
Humans
Infant Newborn
Neonatal Nursing
Nursing Children and Young People
Palliative Care/ma [manpower]
Palliative Care/st [standards]
Perinatal Death
Practice Guidelines As Topic
Pregnancy
September 2017 List
United Kingdom
-
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 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Families' Priorities In Life-limiting Illness: Improving Quality With Online Empowerment
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
2016
Subject
The topic of the resource
Adolescent; Child; Child Preschool; Disabled Children/psychology; Family; Female; Hospice; Humans; Infant; Internet; Longitudinal Studies; Male; Palliative Care; Parents/psychology; Power (psychology); Quality Of Life/psychology; Social Support; Surveys And Questionnaires; United Kingdom; Young Adult
Child; Hospice; Outcome; Parents; Quality Of Life
Creator
An entity primarily responsible for making the resource
Harris N; Beringer A; Fletcher M
Description
An account of the resource
OBJECTIVE:
Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.
INTERVENTION:
MyQuality is an online tool that enables families to choose and monitor parameters they identify as having an impact on their QOL, which aims to improve patient-professional communications and also to enhance patient empowerment within healthcare dialogues.
DESIGN:
A longitudinal, multisite mixed-method evaluation of MyQuality. Families were invited to use MyQuality and completed semi-structured interviews and a Family Empowerment Scale (FES) at T=0 and T+3 months.
PATIENTS AND SETTING:
Thirty-two families of children with LLIs, attending three children's hospices in one UK region.
OUTCOME MEASURES:
Website access, usage patterns and parameter choice, FES scores and qualitative evaluation of interviews.
RESULTS:
23/32 families chose to use the website. Mean duration of use was 106 days (range 2-301), with families choosing two or three parameters (range 1-15), most commonly seizures (24/32), constipation (9/32), pain (6/32) and sleep problems (6/32). Mean FES scores increased over time (3.45-3.85). Interview feedback confirmed the acceptability and ease of use of the website, and the value of a graphic record of change over time to support ongoing management and collaborative review of medical, nursing or social interventions.
CONCLUSIONS:
The identification and monitoring of patient-generated priorities via the MyQuality website empowers families and supports collaboration between parents and professionals to ensure that palliative care is truly patient and family centred.
Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
Identifier
An unambiguous reference to the resource within a given context
doi: 10.1136/archdischild-2015-308769
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).
2016
Adolescent
Archives of Disease in Childhood
Beringer A
Child
Child Preschool
Disabled Children/psychology
Family
Female
Fletcher M
Harris N
Hospice
Humans
Infant
Internet
July 2016 List
Longitudinal Studies
Male
Outcome
Palliative Care
Parents
Parents/psychology
Power (psychology)
Quality Of Life
Quality Of Life/psychology
Social Support
Surveys And Questionnaires
United Kingdom
Young Adult
-
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
December 2016 List
URL Address
<a href="https://doi.org/10.1136/bmj.i6385">https://doi.org/10.1136/bmj.i6385</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
End of Life Care for Infants, Children and Young People with Life Limiting Conditions: Summary of Nice Guidance
Publisher
An entity responsible for making the resource available
British Medical Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adolescent; Advance Care Planning; Child; Humans; Infant; Patient Care Team; Patient Participation; Practice Guidelines As Topic; State Medicine; Terminal Care; United Kingdom
Creator
An entity primarily responsible for making the resource
Villanueva G; Murphy; MS; Vickers D; Harrop E; Dworzynski K
Description
An account of the resource
Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years. This guideline recommends that end of life care be managed as a long term process that begins at the time of diagnosis of a life limiting condition and entails planning for the future. Sometimes it may begin before the child’s birth. It is part of the overall care of the child or young person and runs in parallel with other active treatments for the underlying condition itself.1 Finally, it includes those aspects related to the care of the dying.
This guideline was commissioned with the aim to standardise end of life care for infants, children, and young people living with a life limiting condition, and thus promote equity and consistency. Important themes are to involve children and young people and their parents or carers in decisions about their care, facilitate their care in their preferred location (most likely home), and plan for day and night care.
This article summarises the most recent guidance from the recent National Institute for Health and Care Excellence (NICE) on the planning and management of end of life care in infants, children, and young people.2 For a visual summary, please see infographic.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1136/bmj.i6385">10.1136/bmj.i6385</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).
2016
Adolescent
Advance Care Planning
British Medical Journal
Child
December 2016 List
Dworzynski K
Harrop E
Humans
Infant
MS
Murphy
Patient Care Team
Patient Participation
Practice Guidelines As Topic
State Medicine
Terminal Care
United Kingdom
Vickers D
Villanueva G