1
40
16
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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/10.1136/archdischild-2023-325810" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-325810</a>
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Title
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Importance of parental involvement in paediatric palliative care in Hong Kong: Qualitative case study
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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child; diagnosis; article; female; human; male; social support; palliative therapy; Internet; interview; medical information; physician; health care personnel; therapy; caregiver; semi structured interview; case study; nurse; child health; Hong Kong
Creator
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Wong FKY; Ho JMC; Lai TC; Lee LPY; Ho EKY; Lee SWY; Chan SCW; Fung CW; Ho ACH; Li CH; Li CK; Chiu ATG; Tsui KW; Lam KKW
Description
An account of the resource
Objective: To compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers. Design: A qualitative case study method using semistructured interviews was employed with a within-case and across-case analysis. Themes and subthemes emerging from the cases were compared and contrasted in the across-case analysis to explore the similarities and variations in participant perceptions. Setting/participants: The setting was the paediatric departments of five regional hospitals in Hong Kong. Twenty-five sets of informants (CLLC-parent-healthcare provider) were recruited, with 65 individual interviews conducted. Results: A total of 3784 units of analysis were identified, resulting in three themes with subthemes. 'Living with the disease' (55.8%) occupied the largest proportion, followed by 'information and understanding about the disease' (27.4%), and 'care support and palliative care' (16.8%). Healthcare provider support mainly focused on physical concerns. Family and social support were present, but carer stress created tension between couples. Doctors were the primary source of medical information, but the parents had to seek further information via the internet and support from patient groups. There was a perceived need for better coordination and collaboration of care. The palliative care approach coordinated by nurses was seen as helpful in addressing the care needs of the CLLC.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2023-325810" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-325810</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Archives of Disease in Childhood
Article
Caregiver
Case Study
Chan SCW
Child
Child Health
Chiu ATG
Diagnosis
February List 2024
Female
Fung CW
Health Care Personnel
Ho ACH
Ho EKY
Ho JMC
Hong Kong
Human
Internet
Interview
Lai TC
Lam KKW
Lee LPY
Lee SWY
Li CH
Li CK
Male
Medical Information
Nurse
Palliative Therapy
Physician
Semi Structured Interview
Social Support
Therapy
Tsui KW
Wong FKY
-
Dublin Core
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Title
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October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.54" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.54</a>
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Title
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Use Of Buccal Fentanyl As A Breakthrough Opioid For Symptom Management In Patients Receiving Palliative Care
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Palliative Care; child; female; human; male; retrospective study; pain; palliative therapy; hospice; clinical article; neurologic disease; Fentanyl; opiate; dyspnea; adolescent; case study; conference abstract; drug therapy; fentanyl; absence of side effects; buccal drug administration; drug megadose; maximum permissible dose; mouth cavity
Creator
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Taylor N; Woods S; Hills M; Hain R; Box D
Description
An account of the resource
Objectives Using transmucosal fentanyl as an opioid for rapid acting, needle-free breakthrough relief of symptoms is established within paediatric palliative medicine.1 2 Medication administration via the buccal route is commonly used in paediatric palliative medicine, especially towards the end of life. It does not rely on enteral absorption; it is generally well tolerated, and parents/carers can be taught to administer medication via this route. Buccal administration of fentanyl is possible3 4 but infrequently used as dosing guidance is not readily available including within the APPM formulary.2 Methods We performed a multi-centre retrospective case review of patients using buccal fentanyl under supervision of tertiary specialist palliative care teams (SPCTs). Information was gathered on patient age, diagnosis, symptoms (pain, dyspnoea), weight, starting doses, dose escalation, maximum doses, other symptom medications, setting in which patient was cared for, any administration difficulties and adverse effects. Results Buccal fentanyl (IV solution administered into the buccal cavity) was used in the management of 9 patients under the two SPCTs, with problems across the paediatric palliative care spectrum including those with severe neurological impairment and oncology diagnoses. Patients were aged 5 weeks to 17yrs 11 months with weights ranging from 4kg to 61.3kg (mean = 24.4kg). Fentanyl was used to manage pain and dyspnoea in 6 patients, dyspnoea in two, and pain in one. Starting doses for dyspnoea ranged from 0.4micrograms/kg to 0.9micrograms/kg (mean = 0.7micrograms/kg) and for pain ranged from 0.4micrograms/kg to 1.5micrograms/kg (mean = 0.9 micrograms/kg). Three patients required dose escalation as part of their ongoing management with the highest dose required 20 micrograms/kg. Six patients were opioid naive at the time of starting fentanyl. Patients were cared for across community, hospice and hospital settings. No adverse effects were encountered. Administration difficulties occurred for one patient on high-dose fentanyl due to the large volume of the IV solution required for buccal administration (200 micrograms = 4mls). Conclusions The use of buccal fentanyl for breakthrough opioid medication as part of a palliative care symptom plan appears a safe and effective method of delivering fast-acting symptom relief which is well tolerated by patients and acceptable to families. This case series has demonstrated safe and effective starting doses for pain and dyspnoea management. for patients requiring higher doses the large volume of IV solution required for buccal administration may mean alternative preparations for trans-mucosal fentanyl administration become more practical.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2023-rcpch.54" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.54</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
absence of side effects
Adolescent
Archives of Disease in Childhood
Box D
buccal drug administration
Case Study
Child
Clinical Article
conference abstract
drug megadose
Drug Therapy
Dyspnea
Female
Fentanyl
Hain R
Hills M
Hospice
Human
Male
maximum permissible dose
mouth cavity
Neurologic Disease
October List 2032
Opiate
Pain
Palliative Care
Palliative Therapy
Retrospective Study
Taylor N
Woods S
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1136/spcare-2023-PCC.196" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/spcare-2023-PCC.196</a>
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Title
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Sharing care at the End of life for adolescent patients with neuro-disability: A case series
Publisher
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BMJ Supportive and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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child; Adolescent; adult; female; hospital admission; human; male; palliative therapy; patient care; terminal care; young adult; clinical article; hospital discharge; groups by age; adolescent; deterioration; conference abstract; learning; adulthood; case study; neurodisability; bereavement support; community health nursing; family support; health hazard
Creator
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Elverson J; Aspey H; Bond E; Mackerness C; Hoskins R; Shiell A
Description
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Background Adolescents with long term conditions are recognised to have unique needs and to experience particular health risks as they transfer to adult services. Some young people with complex neuro-disability may live years following transfer to adult services; for others however, reaching adulthood coincides with a significant deterioration in their health. Identifying the best team to support the patient in this situation can be controversial. Community and hospital adult palliative care teams may have an important role to play in supporting these patients, yet clinicians may lack experience working with this age group or managing the symptoms associated with paediatric neurodisability. We present reflections from a series of 6 young adults who received shared-care from adult and paediatric palliative teams and raise discussion about the strengths and learning needs of the different teams involved. Intervention Over a period of 2 years, patients who were between the age of 15 and 19 years and experiencing a significant deterioration in their health were referred to the children's palliative care team for the North East North Cumbria region. Where appropriate, the children's team identified a local adult palliative care team and established a model of shared-care with this team. Findings Across the region 3 adult hospital palliative liaison teams and 4 adult community palliative care teams were involved in shared end of life care. Cross-team debriefs identified benefits including * Improved continuity of care * Access to out of hours support * Avoiding hospital admission/Safe discharge planning * Confidence with medication for symptom management * Access to local family support and bereavement services * Building relationships for future joint working * Support for adult and children's community nursing teams Conclusion Sharing end of life care between adult and paediatric palliative care services can improve the experience of young adults and their families.
Identifier
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<a href="http://doi.org/10.1136/spcare-2023-PCC.196" target="_blank" rel="noreferrer noopener">10.1136/spcare-2023-PCC.196</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adolescent
Adult
ADULTHOOD
Aspey H
August List 2031
Bereavement Support
BMJ Supportive and Palliative Care
Bond E
Case Study
Child
Clinical Article
Community Health Nursing
conference abstract
Deterioration
Elverson J
family support
Female
groups by age
health hazard
Hoskins R
Hospital Admission
hospital discharge
Human
Learning
Mackerness C
Male
Neurodisability
Palliative Therapy
Patient Care
Shiell A
Terminal Care
Young Adult
-
Dublin Core
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Title
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June 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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June 2022 List
URL Address
<a href="https://journals.sagepub.com/doi/10.1177/10499091231169497">https://journals.sagepub.com/doi/10.1177/10499091231169497</a>
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Title
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Intractable Feeding Intolerance in Children With Severe Neurological Impairment: A Retrospective Case Review of Nine Children Known to a Pediatric Palliative Care Service
Publisher
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American Journal of Hospice and Palliative Care
Date
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2023
Subject
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Child; Palliative Care; child; article; female; human; male; preschool child; palliative therapy; hospice; clinical article; intensive care; school child; documentation; Only Child; ethics; patient referral; adolescent; infant; stomach tube; deterioration; retrospective study; drug combination; conversation; nomenclature; neurologic disease; feeding difficulty; parenteral nutrition; case study; enteric feeding; neurodisability; digestive system function disorder
Creator
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Katz NT; Cooper MS; Kularatne A; Prebble A; McGrath KH; McCallum Z; Antolovich G; Sutherland I; Sacks BH
Description
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BACKGROUND: Intractable feeding intolerance in children with severe neurological impairment (SNI) is poorly defined and understood. <br/>OBJECTIVE(S): (1) To describe 9 children with SNI, where intractable feeding intolerance was thought to be a contributor to their deterioration or death. (2) To consider terminology to describe the severe end of the spectrum of feeding difficulties in children with SNI. <br/>RESULT(S): Mean age at death was 10.3 years (range: 5 - 15.6), and median time from palliative care referral to death was 3.1 months. Location of death was home (n = 3), hospice (n = 1), and hospital (n = 5) with 1 death in intensive care. Gastrointestinal "failure" or "dysfunction" were documented for 7 children, (median time between documentation and death was 3.9 months (range: .1 to 13.1)). All children were fed via a gastrostomy tube during their life (median age of insertion 2.5 years (range: 1.2 to 6.8 years)), and 7 via the jejunal route (median age of insertion 9.2 years (range 2.4 to 14.7 years)). Children lived a median of 9 percent of their lives after jejunal tube feeding was commenced. No child had home-based parenteral nutrition. Multiple symptom management medications were required. <br/>CONCLUSION(S): 'Intractable feeding intolerance' describes a clinical crossroads in a child's life where there is an opportunity to consider the appropriateness of further interventions. Further work should explore predictors of intractable feeding intolerance and the delicate balance between cause or contributor to death. The importance of clinician-family prognostic conversations and goal-concordant care both during life and in the terminal phase is highlighted.
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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).
Identifier
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<a href="https://journals.sagepub.com/doi/10.1177/10499091231169497">10.1177/10499091231169497</a>
2023
Adolescent
American Journal Of Hospice And Palliative Care
Antolovich G
Article
Case Study
Child
Clinical Article
Conversation
Cooper MS
Deterioration
digestive system function disorder
Documentation
drug combination
enteric feeding
Ethics
feeding difficulty
Female
Hospice
Human
Infant
Intensive Care
June 2022 List
Katz NT
Kularatne A
Male
McCallum Z
McGrath KH
Neurodisability
Neurologic Disease
Nomenclature
Only Child
Palliative Care
Palliative Therapy
Parenteral Nutrition
Patient Referral
Prebble A
Preschool Child
Retrospective Study
Sacks BH
School Child
stomach tube
Sutherland I
-
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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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July 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.3390/children10040700" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10040700</a>
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The Emotional Experience of Caring for Children in Pediatric Palliative Care: A Qualitative Study among a Home-Based Interdisciplinary Care Team
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
care behavior; emotion; palliative therapy; pediatrics; adult; article; burnout; case study; child; child death; collaborative care team; emotional stress; Emotions; female; health personnel attitude; home care; human; job satisfaction; male; Palliative Care; qualitative research; satisfaction; semi structured interview; thematic analysis
Creator
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Rico-Mena P; Gueita-Rodriguez J; Martino-Alba R; Castel-Sanchez M; Palacios-Cena D
Description
An account of the resource
The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric palliative home care team. A qualitative case study was conducted, comprising 18 participants. A purposeful sampling technique approach was used including the home-based interdisciplinary pediatric palliative team. Data were collected via semi-structured interviews and researchers' field notes. A thematic analysis was performed. Two themes emerged: (a) changing life for the better, which described how professionals value life more and helping children and families provides compassion satisfaction, which is comforting and explains their dedication to care; (b) adverse effects of work highlighted the emotional burden of caring for children with life-limiting or life-threatening illnesses, which can affect their job satisfaction and may lead to burnout, showing how experiencing in-hospital child deaths with suffering leads professionals to develop an interest in specializing in pediatric palliative care. Our study provides information on possible causes of emotional distress in professionals caring for children with life-threatening illnesses and highlights strategies that can help them to reduce their distress.Copyright © 2023 by the authors.
Identifier
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<a href="http://doi.org/10.3390/children10040700" target="_blank" rel="noreferrer noopener">10.3390/children10040700</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
Adult
Article
Burnout
care behavior
Case Study
Castel-Sanchez M
Child
Child Death
Children
collaborative care team
Emotion
Emotional Stress
Emotions
Female
Gueita-Rodriguez J
Health Personnel Attitude
Home Care
Human
Job Satisfaction
July List 2023
Male
Martino-Alba R
Palacios-Cena D
Palliative Care
Palliative Therapy
Pediatrics
Qualitative Research
Rico-Mena P
Satisfaction
Semi Structured Interview
Thematic Analysis
-
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Title
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August 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.12968/ijpn.2022.28.5.208" target="_blank" rel="noreferrer noopener">http://doi.org/10.12968/ijpn.2022.28.5.208</a>
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Title
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Pictures as mementos after perinatal death: a case study
Publisher
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International Journal of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Bereavement; Perinatal death; Grief; Case study
Creator
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Jesus RCA; Benute G; Bertolassi N; Barbosa T; Bolibio R; Figueiredo F; Setubal MS; Gibelli MA; Gomes A; Ferreira R; Francisco R; Bernardes L
Description
An account of the resource
BACKGROUND: The grieving process following perinatal loss caused by life-limiting conditions presents some particularities associated with the family's culture and the symbolic relationship with the deceased. OBJECTIVE: To reflect on the symbolic meaning attributed to mementos, particularly pictures taken immediately after birth. METHOD: Case study-a qualitative analysis of the data collected through semidirected interviews. RESULTS: Of the three women that took part in the study, one woman chose not to take a picture but opted to take home the hat with her son's name on it that was provided as a regular procedure for every birth at the maternity centre. During the interview, she questioned her decision. The two other women took pictures and still look at them affectionate. One of the women keeps the picture of her child in a shrine at home, thus attributing a symbolic religious meaning to the whole experience that alleviates her pain. CONCLUSION: The symbolic meaning attributed to pictures of the deceased can help parents process grief.
Identifier
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<a href="http://doi.org/10.12968/ijpn.2022.28.5.208" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2022.28.5.208</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
August 2022 List
Barbosa T
Benute G
Bereavement
Bernardes L
Bertolassi N
Bolibio R
Case Study
Ferreira R
Figueiredo F
Francisco R
Gibelli MA
Gomes A
Grief
International Journal of Palliative Nursing
Jesus RCA
Perinatal Death
Setubal MS
-
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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December 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
December 2021 List
URL Address
<a href="http://doi.org/10.1515/jtm-2021-0005" target="_blank" rel="noreferrer noopener">http://doi.org/10.1515/jtm-2021-0005</a>
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The role of family adaptation in the transition to adulthood for youth with medical complexity: a qualitative case study protocol
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Journal of Transition Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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adolescents; transition; young adults; case study; complex care; qualitative research; transfer
Creator
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Li L; Carter N; Ploeg J; Gorter JW; Strachan PH
Description
An account of the resource
Background For youth with medical complexity and their families, the transition to adulthood is a stressful and disruptive period that is further complicated by the transfer from relatively integrated and familiar pediatric services to more fragmented and unfamiliar adult services. Previous studies report that families feel abandoned, overwhelmed, and unsupported during transition. In order to provide better support to families, we need to understand how families currently manage transition, what supports they need most, and how key factors influence their experiences. The aim of this study is to understand how families of youth with medical complexity adapt to the youth’s transition to adulthood and transfer to adult health care, social, and education services, and to explain how contextual factors interact to influence this process. Methods Informed by the Life Course Health Development framework, this study will use a qualitative explanatory case study design. The sample will include 10–15 families (1–3 participants per family) of youth with medical complexity (aged 16–30 years) who have lived experience with the youth’s transition to adulthood and transfer to adult services. Data sources will include semi-structured interviews and resources participants identified as supporting the youth’s transition. Reflexive thematic analysis will be used to analyze interview data; directed content analysis will be used for documentary evidence. Discussion While previous studies report that families experience significant challenges and emotional toll during transition, it is not known how they adapt to these challenges. Through this study, we will identify what is currently working for families, what they continue to struggle with, and what their most urgent needs are in relation to transition. The anticipated findings will inform both practice solutions and policy changes to address the needs of these families during transition. This study will contribute to the evidence base needed to develop novel solutions and advance policies that will meaningfully support successful transitions for families of youth with medical complexity.
Identifier
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<a href="http://doi.org/10.1515/jtm-2021-0005" target="_blank" rel="noreferrer noopener">10.1515/jtm-2021-0005</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Adolescents
Carter N
Case Study
complex care
December 2021 List
Gorter JW
Journal of Transition Medicine
Li L
Ploeg J
Qualitative Research
Strachan PH
Transfer
Transition
Young Adults
-
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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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/10.1177/1049732320911627" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049732320911627</a>
Dublin Core
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Title
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Health Care Professionals' Awareness of a Child's Impending Death
Publisher
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Qualitative Health Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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case study; children; decision-making; end-of-life issues; Midwest; professional; qualitative; theory development
Creator
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Kobler K; Bell C; Kavanaugh K; Gallo A M; Corte C; Vincent C
Description
An account of the resource
Health care professionals' (HCPs) experiences during early pediatric end-of-life care were explored using a theory-building case study approach. Multiple data collection methods including observation, electronic medical record review, and semi-structured interviews were collected with 15 interdisciplinary HCPs across four cases. Within- and across-case analyses resulted in an emerging theory. HCPs' initial awareness of a child's impending death is fluid, ongoing, and informed through both relational and internal dimensions. Initial cognitive awareness is followed by a deeper focus on the child through time-oriented attention to the past, present, and future. HCPs engage in a "delicate dance of figuring out" key issues. Awareness was exemplified through four themes: professional responsibility, staying connected, grounded uncertainty, and holding in. The emerging theoretical model provides a framework for HCPs to assess their ongoing awareness, identify personal assumptions, and inform gaps in understanding when facilitating early end-of-life care discussions with families.
Identifier
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<a href="http://doi.org/10.1177/1049732320911627" target="_blank" rel="noreferrer noopener">10.1177/1049732320911627</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
Bell C
Case Study
Children
Corte C
Decision-making
End-Of-Life Issues
Gallo A M
June 2020 List
Kavanaugh K
Kobler K
Midwest
Professional
Qualitative
Qualitative Health Research
theory development
Vincent C
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1186/s11689-016-9145-x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s11689-016-9145-x</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Development, behavior, and biomarker characterization of Smith-Lemli-Opitz syndrome: An update
Publisher
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Journal of Neurodevelopmental Disorders
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; Autism; parent; development; cognition; behavior; Developmental delay; problem behavior; priority journal; case study; interpersonal communication; preschool child; observational study; unclassified drug; childhood; human; article; child; female; male; adult; clinical article; young adult; automutilation; 7 dehydrocholesterol/ec [Endogenous Compound]; 8 dehydrocholesterol/ec [Endogenous Compound]; adaptive behavior; aggression; cerebrospinal fluid level; child rearing; cholesterol/ec [Endogenous Compound]; intelligence quotient; Smith Lemli Opitz syndrome; Smith-Lemli-Opitz syndrome; socialization; Stanford-Binet Intelligence Scale; Sterols; walking; behavior; tone and motor problems; trajectory; characteristics; aggression; development; delayed development
Creator
An entity primarily responsible for making the resource
Thurm A; Tierney E; Farmer C; Albert P; Joseph L; Swedo S; Bianconi S; Bukelis I; Wheeler C; Sarphare G; Lanham D; Wassif C A; Porter F D
Description
An account of the resource
Background: Smith-Lemli-Opitz syndrome (SLOS) is an autosomal recessive inborn error of cholesterol metabolism syndrome with neurocognitive manifestations. SLOS is the result of mutations in the gene encoding the 7-dehydrocholesterol reductase, which results in the elevation of the cholesterol precursor 7-dehydrocholesterol (7-DHC). Previous reports indicate that intellectual disability, behavioral disturbances, and autism symptoms are frequently part of the SLOS behavioral phenotype. In the current study, we characterize the developmental history and current behavior of 33 individuals with SLOS aged 4 to 23 years and report on biomarkers 7-DHC and 8-DHC in relation to cognition and behavior. Methods: This was an observational case series, wherein participants with SLOS underwent extensive behavioral evaluation of cognitive function, adaptive function, autism symptoms, and problem behaviors, in addition to parent report of developmental milestones. Serum and CSF were contemporaneously obtained from the majority of participants. Results: Developmental milestones such as walking, talking, and toileting were uniformly delayed. Overall levels of cognitive and adaptive functioning were low; no participant received adaptive behavior scores in the average range, and the mean level of cognitive functioning in the full sample was in the moderate range of impairment. Aggressive behavior was present in nearly half of participants. Although the majority of participants had elevated scores on the gold standard autism diagnostic instruments, only about half of participants received a clinical diagnosis of autism spectrum disorder. Finally, while CSF cholesterol was not found to correlate with cognitive or adaptive functioning, both serum and CSF 7-DHC and 8-DHC (and their ratios with cholesterol) were moderately and negatively correlated with functioning in this group. Conclusions: A history of developmental delay, followed by intellectual disability, is common in individuals with SLOS. Although autism spectrum disorder appears to be a frequent diagnosis in this population, it is apparent that the low level of functioning observed in SLOS may artificially inflate scores on standard autism assessments. Our findings further support that cholesterol precursors 7-DHC and 8-DHC are important biomarkers of the level of functioning in SLOS, especially regarding cognitive abilities, and thus may be to explore as mediators within the context of treatment trials.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s11689-016-9145-x" target="_blank" rel="noreferrer noopener">10.1186/s11689-016-9145-x</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
7 dehydrocholesterol/ec [Endogenous Compound]
8 dehydrocholesterol/ec [Endogenous Compound]
adaptive behavior
Adolescent
Adult
Aggression
Albert P
Article
Autism
automutilation
Behavior
Bianconi S
Bukelis I
Case Study
cerebrospinal fluid level
characteristics
Child
Child Rearing
childhood
cholesterol/ec [Endogenous Compound]
Clinical Article
Cognition
delayed development
development
Developmental delay
Farmer C
Female
Human
Intelligence Quotient
Interpersonal Communication
Joseph L
Journal of Neurodevelopmental Disorders
Lanham D
Male
Observational Study
Parent
Porter F D
Preschool Child
Priority Journal
problem behavior
Sarphare G
Smith Lemli Opitz syndrome
Smith-Lemli-Opitz syndrome
Socialization
Stanford-Binet Intelligence Scale
Sterols
Swedo S
Thurm A
Tierney E
tone and motor problems
Trajectory
Unclassified Drug
Walking
Wassif C A
Wheeler C
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1097/MPG.0000000000001543" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/MPG.0000000000001543</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Feed-induced Dystonias in Children with Severe Central Nervous System Disorders
Publisher
An entity responsible for making the resource available
Journal of Pediatric Gastroenterology and Nutrition
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
infant; adolescent; cerebral palsy; percutaneous endoscopic gastrostomy; retrospective study; priority journal; practice guideline; case study; school child; preschool child; intestine obstruction; human; article; child; female; male; clinical article; Rett syndrome; gastroesophageal reflux; infantile spasm; intestinal dysmotility; baclofen/dt [Drug Therapy]; dystonia/dt [Drug Therapy]; motor dysfunction; onset age; central nervous system disease; dystonia/dt [Drug Therapy]; feed induced dystonia; 1134-47-0 (baclofen); acquired brain injury; baclofen/tl [Intrathecal Drug Administration]; feed induced dystonia/dt [Drug Therapy]; gastroscopy; hydrocephalus; hyperglycinemia; intestine motility; microcephaly; peristalsis; reflux esophagitis; Sanfilippo syndrome; total parenteral nutrition; constipation; feeding difficulties; tone and motor problems; MPSIII; West syndrome; pharmacologic intervention; parenteral nutrition; dystonia; GERD; intestinal dysmotility
Creator
An entity primarily responsible for making the resource
Mordekar S R; Velayudhan M; Campbell D I
Description
An account of the resource
Dystonias can arise from any painful stimuli in neurologically disabled children. Classically, feed-induced dystonias from mediastinal pain due to severe gastroesophageal reflux disease are described as Sandifer spasm. We report a case series of 12 severely neurologically impaired children with enteral feed-induced dystonias. Intestinal dysmotility was demonstrated in several. Improvements are seen with jejunal feeds or gut rest with total parenteral nutrition. Use of parenteral nutrition in children with severe neurodisability requires thorough discussion with patient groups and commissioners to give clinicians guidelines to standardize care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/MPG.0000000000001543" target="_blank" rel="noreferrer noopener">10.1097/MPG.0000000000001543</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).
1134-47-0 (baclofen)
2017
acquired brain injury
Adolescent
Article
Baclofen/dt [drug Therapy]
baclofen/tl [Intrathecal Drug Administration]
Campbell D I
Case Study
central nervous system disease
Cerebral Palsy
Child
Clinical Article
Constipation
Dystonia
dystonia/dt [Drug Therapy]
feed induced dystonia
feed induced dystonia/dt [Drug Therapy]
feeding difficulties
Female
Gastroesophageal Reflux
Gastroscopy
GERD
Human
Hydrocephalus
Hyperglycinemia
Infant
infantile spasm
intestinal dysmotility
intestine motility
Intestine Obstruction
Journal Of Pediatric Gastroenterology And Nutrition
Male
microcephaly
Mordekar S R
motor dysfunction
MPSIII
onset age
Parenteral Nutrition
Percutaneous Endoscopic Gastrostomy
peristalsis
pharmacologic intervention
Practice Guideline
Preschool Child
Priority Journal
reflux esophagitis
Retrospective Study
Rett syndrome
Sanfilippo syndrome
School Child
tone and motor problems
total parenteral nutrition
Velayudhan M
West syndrome
-
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
March 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2019 List
URL Address
<a href="http://doi.org/10.1136/goshabs.18" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1136/goshabs.18</a>
Dublin Core
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Title
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Talking to parents about their preferences for their child's place of death: A prospective study
Publisher
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
hospice; government; advanced cancer; major clinical study; prospective study; case study; outcome assessment; hematologic malignancy; solid malignant neoplasm; conference abstract; human; child; female; palliative therapy; patient care; death; multidisciplinary team; clinician; achievement; social aspect
Creator
An entity primarily responsible for making the resource
Henderson E; Peake J; Al-Khabbaz E; Langner R; Dinsdale A; Craig F; Bluebond-Langner M
Identifier
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<a href="http://doi.org/10.1136/goshabs.18" target="_blank" rel="noreferrer noopener"> 10.1136/goshabs.18</a>
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).
Description
An account of the resource
Background Government policy identifies home as the preferred place of death (PPOD) for children and young people (CYP) and suggests a home death as an indicator of the quality of care. A recent systematic review found a lack of compelling evidence for both home as the preferred place of death and the suitability of home death as a quality outcome. Rather, one study suggested that offering a discussion is more important for outcomes. Despite these findings, the achievement of preference remains a common quality measure of paediatric palliative care (PPC) services. This study explored factors which influenced the initiation of discussions, preferences, achievement of preferences and their value as an outcome measure. Methods A prospective case series review was conducted from March 2015-February 2017. Data included: 1) Routinely collected PPC PPOD data for CYP and their parents including the offer of a discussion, preferences expressed and if preference was achieved 2) Field notes taken at multidisciplinary team (MDT) meetings between clinicians where preference was discussed after the child's death 3) Advanced care planning and place of care data extracted from medical notes. Results Data was available for 256 CYP (117 female). 29% of CYP had a solid tumour malignancy, 10% had a haematological malignancy and 61% died of non-malignant disease. Parents of CYP with malignancies were more likely to be offered a discussion of PPOD (60/73 compared to 84/156 of those with non-malignant disease). A hospital was preferred by 38%, home 28% and hospice 18%. Preference for hospital or hospice was more likely to be achieved. Per clinician report, parent preference was influenced by patient condition, continuity of care, family and social factors and availability of services. Conclusion Contrary to government policy and voluntary sector statements home deaths are not preferred by most parents. Achievement of PPOD is unsuitable as a measure of service performance.
2018
achievement
Advanced Cancer
Al-Khabbaz E
Archives of Disease in Childhood
Bluebond-Langner M
Case Study
Child
Clinician
conference abstract
Craig F
Death
Dinsdale A
Female
government
Hematologic Malignancy
Henderson E
Hospice
Human
Langner R
Major Clinical Study
March 2019 List
Multidisciplinary team
outcome assessment
Palliative Therapy
Patient Care
Peake J
Prospective Study
social aspect
solid malignant neoplasm
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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2018 Oncology 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
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1002/pbc.27455</a>
Dublin Core
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Title
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An interdisciplinary care model to establishing palliative care for children and adolescents with cancer
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Taiwan; hospice; adolescent; pain; terminal care; oncology ward; education; palliative therapy; dyspnea; social worker; cancer patient; satisfaction; childhood cancer; case study; constipation; fatigue; health care quality; conference abstract; human; child; cancer model; counseling
Creator
An entity primarily responsible for making the resource
Lin FR; Hsu PY
Description
An account of the resource
Background/Objectives: Palliative care for Pediatric cancer patients and their families includes the relief of symptom and improvement of quality of life at any and all stages of disease. There care are most effectively provided by an interdisciplinary team. The purpose of this study was to develop an interdisciplinary care model to establishing palliative care into end of life care for children and adolescents with cancer. Design/Methods: The setting of this study was about a 24-bed Pediatric Oncology ward in Taiwan from November 2015 to July 2017. We use "satisfaction with care at the end of life" to measure medical members satisfaction and the instruments was based on literature review. We worked out those methods:(1) Symptom management: scheduled education for symptom control and care of the end of life of patient, such as fatigue, pain, constipation, or dyspnea.(2.) To develop an interdisciplinary care model: we implemented case analysis of the end of life of patient and redesigned a new counseling mechanism. (3) To design implement for age-appropriate: child life specialists are required to set and collected age-appropriate toy from social worker. Results: After our study, It have three aspects for satisfaction score: (1)"recognition of the problem by the medical team" were increased from 5.3 points to 8.1 points; (2)" an interdisciplinary care" were increased from 6.3 points to 9.1 points; (3)" age-appropriate implement " were increased from 5.8 points to 9.7 points. Additional benefits for the rate of hospice-palliative coverage, at the end of life in children and adolescents with cancer, were increased from 68% (2013/1/1~2014/12/31) to 100% (2016/1/1~2017/12/31). Conclusions: We found that children and adolescents who died of cancer experienced substantial suffering in the last month of life. Based on our results, we established an interdisciplinary care model that it is most effectively and healthcare quality of palliative care can be improved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
2018
Adolescent
cancer model
Cancer Patient
Case Study
Child
Childhood Cancer
conference abstract
Constipation
Counseling
Dyspnea
Education
Fatigue
Health Care Quality
Hospice
Hsu PY
Human
Lin FR
Oncology 2018 List
oncology ward
Pain
Palliative Therapy
Pediatric Blood and Cancer
Satisfaction
Social Worker
Taiwan
Terminal Care
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2018 Developing World 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
Developing World 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1002/pbc.27455</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
Impact of Pediatric palliative care initiative at tertiary cancer care hospital of nepal
Publisher
An entity responsible for making the resource available
Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
quality of life; hospice; analgesia; terminal care; cancer center; hematologic malignancy; palliative therapy; dyspnea; major clinical study; practice guideline; case study; brain tumor; conference abstract; human; child; female; male; diagnosis; gastrointestinal symptom; wound; sarcoma; Nepal
Creator
An entity primarily responsible for making the resource
Sharma KS; Panthee S
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
2018
Analgesia
Brain Tumor
cancer center
Case Study
Child
conference abstract
Developing World 2018 List
Diagnosis
Dyspnea
Female
Gastrointestinal Symptom
Hematologic Malignancy
Hospice
Human
Major Clinical Study
Male
Nepal
Palliative Therapy
Panthee S
Pediatric Blood and Cancer
Practice Guideline
Quality Of Life
Sarcoma
Sharma KS
Terminal Care
wound
-
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
2018 Developing World 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
Developing World 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1002/pbc.27455</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
Ethical dilemmas encountered by a palliative care team at a Pediatric cancer center in guatemala
Publisher
An entity responsible for making the resource available
Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
adolescent; poverty; intensive care; blood transfusion; palliative therapy; major clinical study; retrospective study; cancer patient; patient autonomy; sound; treatment withdrawal; religion; pregnancy; case study; physician; cancer therapy; childhood cancer; conference abstract; justice; medical record review; human; child; female; adult; patient care; surgery; drug withdrawal; multidisciplinary team; cancer center; Guatemala; bioethics; brain death; cancer surgery; substance abuse; treatment refusal
Creator
An entity primarily responsible for making the resource
Bustamante Tuchez LM; Rivas S; Paz G; Valverde P; Zaidi A; Close P
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
2018
Adolescent
Adult
Bioethics
Blood Transfusion
Brain Death
Bustamante Tuchez LM
cancer center
Cancer Patient
cancer surgery
Cancer Therapy
Case Study
Child
Childhood Cancer
Close P
conference abstract
Developing World 2018 List
Drug Withdrawal
Female
Guatemala
Human
Intensive Care
Justice
Major Clinical Study
Medical Record Review
Multidisciplinary team
Palliative Therapy
Patient Autonomy
Patient Care
Paz G
Pediatric Blood and Cancer
Physician
Poverty
Pregnancy
Religion
Retrospective Study
Rivas S
Sound
substance abuse
Surgery
Treatment Refusal
Treatment Withdrawal
Valverde P
Zaidi A
-
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
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
Child Death And Deterioration Review Group
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
2017
Subject
The topic of the resource
Child Death; Deterioration; Adoption; Adverse Drug Reaction; Case Study; Cause Of Death; Child; Clinical Article; Controlled Study; Female; Health Care Quality; Human; Learning; Male; Nursing Staff; Palliative Therapy; Perception; Side Effect; Student; Trust
Creator
An entity primarily responsible for making the resource
Alderton M; Pryde K
Description
An account of the resource
Background In order to improve outcomes for acutely unwell children and young people it is essential to learn from those cases in which children deteriorate and die. In our trust there was no universal record of child deaths or deteriorations and no over view of cases to identify learning, either positive or developmental. Aims The child death and deterioration (CDAD) review group was formed to enable a rapid multi-disciplinary timely review of every child death and unplanned PICU admissions. It allows concerns related to the care or cause of death to be identified, identifies need for more detailed reviews, investigation of adverse events and noting of good practice. Methods Group includes senior doctors and nursing staff, palliative care and risk team. Weekly meetings review cases from the preceding week. Cases are allocated 15 min and the patient's team (ideally medical and nursing) presents. Trainees are encouraged to attend. Cases are discussed, actions generated and graded 1-6 according to standard of care given. We also gather parent/patient feedback regarding unplanned PICU admissions to help provide insight into the perception they have of care provided. Results/measures Over the first year of CDAD, 38 child deaths and 138 unplanned PICU admissions have been reviewed. Various data including demographics, clinical area admitted from, involvement of outreach and palliative care teams, cause of death/deterioration and clinical grading are available (see figures 1-4). Multiple lessons of positive and negative practices as well as action plans are collated and fed back via care groups QuEST (M and M type) meeting. Favourable event reporting forms are completed for individuals and teams who have delivered excellent care. Lessons for practice Good discussion between professional groups and different specialities occurs including consideration of number areas of non technical elements. This has identified system, human interaction, equipment, environment and personal factors (including knowledge) that can be improved as well as a number of areas of good practice for spread and adoption.
Identifier
An unambiguous reference to the resource within a given context
10.1136/archdischild-2017-313087.20
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
Adoption
Adverse Drug Reaction
Alderton M
Archives of Disease in Childhood
Case Study
Cause Of Death
Child
Child Death
Clinical Article
Controlled Study
Deterioration
Female
Health Care Quality
Human
Learning
Male
Nursing Staff
Palliative Therapy
Perception
Pryde K
September 2017 List
Side Effect
Student
Trust
-
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
May 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
End Of Life Care In Paediatric Neurodegenerative Disease: A Regional Experience
Publisher
An entity responsible for making the resource available
Developmental Medicine And Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Degenerative Disease; Terminal Care; Case Study; Child; Clinical Article; Controlled Study; England; Family; Hospital; Human; Myoclonus; Neurodegenerative Diseases; Neurology; Only Child; Palliative Care; Palliative Therapy; Personal Experience; Rare Disease; Seizure; Social Welfare; Symptom; Terminal Care
Creator
An entity primarily responsible for making the resource
Donald A; Kauffmann L; Ram D; Vassallo G
Description
An account of the resource
Objectives: To identify barriers to delivering patient and family centred end of life care to children with neurodegenerative disease, of which seizures and myoclonic epilepsy is a significant symptom. To highlight good practice in delivery of end of life care to this patient population. To highlight the unique and specific challenges of end of life care in neurodegenerative disease. Introduction: New Children and Young Persons Advanced Care Planning Guidance has been introduced in 2015. The aim is to improve collaborative working between health care services for children and to create a clear, safe and effective platform from which to provide palliative care. In view of this, consideration has been given to the experience of children and families with neurodegenerative disease in different parts of the Northwest of England. These children, like many other cohorts of children with rare or chronic disease, have unique and specific needs. Methods: This case-series describes the end of life care provided to families in different regions of the Northwest. Case notes of six patients who died between 2013 and 2015 and who received input from the Paediatric Neurology Department at Royal Manchester Children's Hospital, were reviewed. All patients had a neurodegenerative disease with seizure or myoclonus as a significant symptom. Case notes were reviewed systematically with use of a developed proforma. Results: The review showed the most effective end of life care varied by geographical region likely reflecting provision of community services. Those patients with access to dedicated and engaged community and tertiary centre teams who worked in collaboration had the most effective end of life experience. Conclusions: Children with neurodegenerative disease do have unique and specific end of life needs, however, fundamental to effective end of life care is a care multi-agency cohesive and accessible team.
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
Case Study
Child
Clinical Article
Controlled Study
Degenerative Disease
Developmental Medicine and Child Neurology
Donald A
England
Family
Hospital
Human
Kauffmann L
May 2017 List
Myoclonus
Neurodegenerative Diseases
Neurology
Only Child
Palliative Care
Palliative Therapy
Personal Experience
Ram D
Rare Disease
Seizure
Social Welfare
Symptom
Terminal Care
Vassallo G