1
40
273
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 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.
Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.3390/children11020234" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children11020234</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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The Use of Cannabinoids in Pediatric Palliative Care-A Retrospective Single-Center Analysis
Publisher
An entity responsible for making the resource available
Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
child; Palliative Care; diagnosis; article; female; human; male; retrospective study; Cannabinoids; spasticity; epilepsy; quality of life; outpatient; palliative therapy; pain; anxiety; clinical article; school child; human tissue; side effect; adolescent; therapy; drug dose increase; drug combination; drug therapy; nausea; adverse drug reaction; pediatric patient; loss of appetite; paresis; restlessness; special situation for pharmacovigilance; cannabinoid; add on therapy; decreased appetite
Creator
An entity primarily responsible for making the resource
Tagsold D; Toni I; Trollmann R; Woelfle J; Gravou-Apostolatou C
Description
An account of the resource
This data analysis aimed to systematically analyze a pediatric patient population with a life-limiting disease who were administered cannabinoids. It was a retrospective single-center analysis of patients under supervision of the specialized outpatient pediatric palliative care (SOPPC) team at the Department of Pediatrics and Adolescent Medicine of the Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU). Thirty-one patients with a primary diagnosis of neuropediatric, oncologic, metabolic, and cardiologic categories were included. The indications we identified were spasticity, pain, restlessness, anxiety, loss of appetite, epilepsy, and paresis. Certain aspects of quality of life were improved for 20 of 31 patients (64.5%). For nine patients (29%), no improvement was detected. No conclusions could be drawn for two patients (6.5%). Adverse events were reported for six of the thirty-one patients (19.4%). These were graded as mild, including symptoms such as restlessness, nausea, and behavioral issues. We detected no clinically relevant interactions with other medications. We collected fundamental data on the use of cannabinoids by pediatric palliative patients. Cannabinoids are now frequently administered in pediatric palliative care. They seem to be safe to use and should be considered an add-on therapy for other drug regimens.
Identifier
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<a href="http://doi.org/10.3390/children11020234" target="_blank" rel="noreferrer noopener">10.3390/children11020234</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).
2024
add on therapy
Adolescent
Adverse Drug Reaction
anxiety
April List 2024
Article
Cannabinoid
Cannabinoids
Child
Children
Clinical Article
decreased appetite
Diagnosis
drug combination
drug dose increase
Drug Therapy
Epilepsy
Female
Gravou-Apostolatou C
Human
Human Tissue
Loss Of Appetite
Male
Nausea
Outpatient
Pain
Palliative Care
Palliative Therapy
paresis
pediatric patient
Quality Of Life
restlessness
Retrospective Study
School Child
Side Effect
Spasticity
special situation for pharmacovigilance
Tagsold D
Therapy
Toni I
Trollmann R
Woelfle J
-
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
April 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.
Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.3390/children11020224" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children11020224</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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"We Want to Talk about Death, Dying and Grief and to Learn about End-of-Life Care"-Lessons Learned from a Multi-Center Mixed-Methods Study on Last Aid Courses for Kids and Teens
Publisher
An entity responsible for making the resource available
Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
child; Adolescent; Terminal Care; terminal care; adult; article; human; male; palliative therapy; aged; Europe; Australia; grief; interview; education; dying; adolescent; questionnaire; curriculum; awareness; literacy
Creator
An entity primarily responsible for making the resource
Bollig G; Graf K; Gruna H; Drexler D; Pothmann R
Description
An account of the resource
Background: Last Aid Courses (LAC) for adults have been established in 21 countries in Europe, Australia and America to improve the public discussion about death and dying and to empower people to participate in end-of-life care provision. In 2018, the first Last Aid Courses for kids and teens (LAC-KT) were introduced. The aim of the study was to explore the views and experiences of the course participants and Last Aid Course instructors on the LAC-KT. Methods: A mixed-methods approach was used. The views of the LAC-KT participants, aged 7 to 17 years, on the LAC-KT were collected using a questionnaire. In addition, the experiences of the Last Aid Course instructors were explored in focus group interviews. Results: The results show that 84% of the participants had experiences with death and dying and 91% found the LAC-KT helpful for everyone. The majority of the participants appreciate the opportunity to talk and learn about death, dying, grief and palliative care. Conclusions: The LAC-KT is feasible, very well accepted and a welcome opportunity for exchanging and obtaining information about dying, grief and palliative care. The findings of the study indicate that the LAC-KT should be offered to all interested children and teenagers and included in the school curriculum.
Identifier
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<a href="http://doi.org/10.3390/children11020224" target="_blank" rel="noreferrer noopener">10.3390/children11020224</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).
2024
Adolescent
Adult
Aged
April List 2024
Article
Australia
Awareness
Bollig G
Child
Children
Curriculum
Drexler D
Dying
Education
Europe
Graf K
Grief
Gruna H
Human
Interview
literacy
Male
Palliative Therapy
Pothmann R
Questionnaire
Terminal Care
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.3390/children10111777%5C"> http://doi.org/10.3390/children10111777\</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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Preparing for Death While Investing in Life: A Narrative Inquiry and Case Report of Home-Based Paediatric Palliative, End-of-Life, and After-Death Care
Publisher
An entity responsible for making the resource available
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
Palliative Care; Human; Male; Qualitative Studies; Bereavement; Support Psychosocial; Family Centered Care; Pediatric Care; Child; Methods; Collaboration; Interprofessional Relations; Diagnosis; Diffuse Intrinsic Pontine Glioma; Holistic Care; Home Health Care; Magnetic Resonance Imaging; Music Therapy; Narratives; Organ Donation; Pain Management; Pediatric Nurse Practitioners; Prognosis; Psychotherapy; Therapy
Creator
An entity primarily responsible for making the resource
Noyes M; Delaney A; Lang M; Maybury M; Moloney S; Bradford N
Description
An account of the resource
Paediatric palliative care is pivotal for addressing the complex needs of children with incurable diseases and their families. While home-based care offers a familiar and supportive environment, delivering comprehensive services in this context is challenging. The existing literature on home-based palliative care lacks detailed guidance for its organization and implementation. This qualitative narrative inquiry explores the organization and provision of home-based paediatric palliative care. Data were collected from healthcare practitioners using conversations, storytelling, and reflective journaling. Schwind's Narrative Reflective Process was applied to synthesize the data, resulting in an in-depth case description. The narrative approach illuminates the complexities of home-based paediatric palliative, end-of-life, and after-death care. Key findings encompass the importance of early-care coordination, interprofessional collaboration, effective symptom management, emotional and psychosocial support, and comprehensive end-of-life planning. Through the case study of the child patient, the challenges and strategies for providing holistic, family-centred care within the home environment are described. Practical insights gained from this report can inform the development and improvement of home-based palliative care programs, benefiting researchers, practitioners, and policymakers seeking to optimize care for children and families in similar contexts.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3390/children10111777%5C">10.3390/children10111777\</a>"
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Bereavement\
Bradford N
Child\
Children
Collaboration\
Delaney A
Diagnosis\
Diffuse Intrinsic Pontine Glioma
Family Centered Care\
February List 2024
Holistic Care\
Home Health Care\
Human\
Interprofessional Relations\
Lang M
Magnetic Resonance Imaging\
Male\
Maybury M
Methods\
Moloney S
Music Therapy\
Narratives\
Noyes M
Organ Donation\
Pain Management\
Palliative Care
Pediatric Care\
Pediatric Nurse Practitioners\
Prognosis\
Psychotherapy\
Qualitative Studies\
Support Psychosocial\
Therapy\
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
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.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.3390/children10111726" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10111726</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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Relevance of Potential Contributing Factors for the Development and Maintenance of Irritability of Unknown Origin in Pediatric Palliative Care
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
child; diagnosis; article; human; major clinical study; dystonia; palliative therapy; pain; neurologic disease; adolescent; infant; social aspect; irritability; Krippendorff's alpha coefficient
Creator
An entity primarily responsible for making the resource
Kubek LA; Angenendt N; Hasan C; Zernikow B; Wager J
Description
An account of the resource
Potential contributing factors (PCFs) for irritability of an unknown origin (IUO) in children with neurological conditions are identifiable through structured diagnostics. Uncertainty exists regarding the actual relevance of identified PCFs to IUO. Assessments from parents as well as nursing, psycho-social, and medical professionals were used to determine the contribution of different PCFs in the development and maintenance of IUO. For this, individual PCFs of N = 22 inpatient children with IUO were presented to four raters. Descriptive statistics, Kruskal-Wallis tests, and Krippendorff's alpha were used to determine which PCFs were most relevant to explain IUO and rater agreement. Psycho-social aspects (44.7%), hyperarousal (47.2%), pain (24.6%), and dystonia (18.1%) were identified as the most relevant PCFs for IUO. Descriptively, physicians' relevance rating regarding psycho-social aspects, hyperarousal, and dystonia deviated the most from the overall group rating. All professional raters considered psycho-social aspects to be more relevant than did parents. Parents rated pain as more relevant than the other raters. Kruskal-Wallis tests showed no significant differences between relevance ratings (H = 7.42, p = 0.059) or the four parties' deviations (H = 3.32, p = 0.344). A direct comparison of the six two-party constellations showed that across all factors, agreement was weak to moderate. The highest agreement was between physicians and nurses (α = 0.70), and the lowest was between nurses and psycho-social experts (α = 0.61). Understanding which psycho-social and various biological PCFs are significant for IUO can facilitate more targeted and individualized pediatric palliative care for affected patients.
Identifier
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<a href="http://doi.org/10.3390/children10111726" target="_blank" rel="noreferrer noopener">10.3390/children10111726</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adolescent
Angenendt N
Article
Child
Children
Diagnosis
Dystonia
February List 2024
Hasan C
Human
Infant
Irritability
Krippendorff's alpha coefficient
Kubek LA
Major Clinical Study
Neurologic Disease
Pain
Palliative Therapy
social aspect
Wager J
Zernikow B
-
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 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.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.3390/children10101635" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10101635</a>
Dublin Core
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Title
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Lactation Support as a Proxy Measure of Family-Centered Care Quality in Neonates with Life-Limiting Conditions-A Comparative Study
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
article; cohort analysis; controlled study; female; hospital admission; human; major clinical study; male; retrospective study; cerebral palsy; gestational age; comparative study; hospital discharge; congenital heart disease; genetic disorder; seizure; neurologic disease; lung disease; neonatal intensive care unit; clinical assessment; mortality; infant; kidney disease; extracorporeal oxygenation; health disparity; cognitive defect; length of stay; gastrointestinal disease; do not resuscitate order; breast feeding; hypoxic ischemic encephalopathy; family centered care; sensory dysfunction; incurable disease; lactation; life limiting condition; breast pump; donor milk; learning disorder; nutritional deficiency
Creator
An entity primarily responsible for making the resource
Brito S; Williams A; Fox J; Mohammed T; Chahin N; McCarthy K; Nubayaat L; Nunlist S; Brannon M; Xu J; Hendricks-Munoz KD
Description
An account of the resource
Lactation support is an important measure of Family-Centered Care (FCC) in the Neonatal Intensive Care Unit (NICU). Life-limiting conditions (LLCs) raise complex ethical care issues for providers and parents in the NICU and represent a key and often overlooked population for whom FCC is particularly important. We investigated healthcare disparities in FCC lactation support quality in infants with LLCs. Methods: A retrospective cohort of inborn infants with or without LLCs admitted to the NICU between 2015-2023 included 395 infants with 219 LLC infants and 176 matched non-LLC infants and were compared on LLC supports. Results: The LLC cohort experienced greater skin-to-skin support, but less lactation specialist visits, breast pumps provided, and human milk oral care use. LLC infants also experienced less maternal visitation, use of donor milk (LLC: 15.5%, non-LLC: 33.5%), and breastfeeds (LLC: 24.2%, non-LLC: 43.2%), with lower mean human milk provision (LLC: 36.6%, non-LLC: 67.1%). LLC infants who survived to discharge had similar human milk use as non-LLC infants (LLC: 49.8%, non-LLC: 50.6%). Conclusion: Lactation support was significantly absent for families and infants who presented with LLCs in the NICU, suggesting that policies can be altered to increase lactation support FCC quality for this population.
Identifier
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<a href="http://doi.org/10.3390/children10101635" target="_blank" rel="noreferrer noopener">10.3390/children10101635</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Article
Brannon M
breast feeding
breast pump
Brito S
Cerebral Palsy
Chahin N
Children
clinical assessment
Cognitive Defect
Cohort Analysis
Comparative Study
Congenital Heart Disease
Controlled Study
do not resuscitate order
Donor Milk
extracorporeal oxygenation
Family Centered Care
February List 2024
Female
Fox J
gastrointestinal disease
Genetic Disorder
Gestational Age
health disparity
Hendricks-Munoz KD
Hospital Admission
hospital discharge
Human
hypoxic ischemic encephalopathy
incurable disease
Infant
kidney disease
lactation
learning disorder
Length Of Stay
Life limiting condition
Lung Disease
Major Clinical Study
Male
McCarthy K
Mohammed T
Mortality
Neonatal Intensive Care Unit
Neurologic Disease
Nubayaat L
Nunlist S
nutritional deficiency
Retrospective Study
Seizure
sensory dysfunction
Williams A
Xu J
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 5 - Low Resource Setting 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
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.3390/children8040275" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children8040275</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
Use of paclitaxel to successfully treat children, adolescents, and young adults with Kaposi sarcoma in southwestern Tanzania
Publisher
An entity responsible for making the resource available
Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
child; Adolescent; adult; article; cohort analysis; female; human; major clinical study; male; retrospective study; quality of life; treatment duration; young adult; follow up; cancer palliative therapy; cancer recurrence; cancer survival; adolescent; treatment outcome; trend study; virus load; multiple cycle treatment; cancer combination chemotherapy; doxorubicin/cb [Drug Combination]; doxorubicin/dt [Drug Therapy]; vincristine/cb [Drug Combination]; vincristine/dt [Drug Therapy]; treatment planning; long term survival; Tanzania; Kaposi sarcoma/dt [Drug Therapy]; paclitaxel/dt [Drug Therapy]; antiretroviral therapy; antiretrovirus agent/dt [Drug Therapy]; bleomycin/cb [Drug Combination]; bleomycin/dt [Drug Therapy]; bleomycin/iv [Intravenous Drug Administration]; dexamethasone/dt [Drug Therapy]; drug contraindication; Human immunodeficiency virus infection/dt [Drug Therapy]; lack of drug effect; vincristine/iv [Intravenous Drug Administration]; Paclitaxel
Creator
An entity primarily responsible for making the resource
Adinani H; Campbell L; El-Mallawany NK; Slone J; Mehta P; Bacha J
Description
An account of the resource
Treating Kaposi sarcoma (KS) in children, adolescents, and young adults (AYA) remains a challenge in low-and middle-income countries (LMIC) where chemotherapy options and availability are limited. We describe a retrospective cohort review of pediatric patients with KS treated with paclitaxel in Mbeya, Tanzania, between 1 March 2011 and 31 December 2019. Paclitaxel was given to patients who had KS relapse, a contraindication to bleomycin, vincristine, and doxorubicin (ABV), special circumstances in which a clinician determined that paclitaxel was preferable to ABV, or experienced treatment failure, defined as persistent KS symptoms at the completion of treatment. All patients also received multidisciplinary palliative care. Seventeen patients aged 5.1-21.3 years received paclitaxel, of whom 47.1% (8/17) had treatment failure, 29.4% (5/17) received paclitaxel as initial treatment, and 23.5% (4/17) had relapsed. All HIV positive patients (16/17) were given anti-retroviral therapy (ART) and 87.5% (14/16) achieved viral load <1000 cp/mL. At censure, 82.3% (14/17) of patients were alive-71.4% (10/14) achieved complete clinical remission and 28.6% (4/14) achieved a partial response. The median follow up was 37.3 months (range 8.0-83.5, IQR 19.7-41.6), and no patients were lost to follow up. In this cohort, high rates of long-term survival and favorable outcomes were possible with paclitaxel treatment.Copyright © 2021 by the authors. Licensee MDPI, Basel, Switzerland.
Identifier
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<a href="http://doi.org/10.3390/children8040275" target="_blank" rel="noreferrer noopener">10.3390/children8040275</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).
2021
2023 SE5 - Low Resource Setting
Adinani H
Adolescent
Adult
antiretroviral therapy
antiretrovirus agent/dt [Drug Therapy]
Article
Bacha J
bleomycin/cb [Drug Combination]
bleomycin/dt [Drug Therapy]
bleomycin/iv [Intravenous Drug Administration]
Campbell L
cancer combination chemotherapy
Cancer Palliative Therapy
Cancer Recurrence
Cancer Survival
Child
Children
Cohort Analysis
dexamethasone/dt [Drug Therapy]
doxorubicin/cb [Drug Combination]
doxorubicin/dt [Drug Therapy]
drug contraindication
El-Mallawany NK
Female
Follow Up
Human
Human immunodeficiency virus infection/dt [Drug Therapy]
Kaposi sarcoma/dt [Drug Therapy]
lack of drug effect
long term survival
Major Clinical Study
Male
Mehta P
multiple cycle treatment
Paclitaxel
paclitaxel/dt [Drug Therapy]
Quality Of Life
Retrospective Study
Slone J
Tanzania
treatment duration
Treatment Outcome
Treatment Planning
trend study
vincristine/cb [Drug Combination]
vincristine/dt [Drug Therapy]
vincristine/iv [Intravenous Drug Administration]
virus load
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
2023 Special Edition 5 - Low Resource Setting 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
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.3390/children10040705" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10040705</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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Silent Tears of Midwives: 'I Want Every Mother Who Gives Birth to Have Her Baby Alive'-A Narrative Inquiry of Midwives Experiences of Very Early Neonatal Death from Tanzania
Publisher
An entity responsible for making the resource available
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
Midwives; Neonatal Death
Creator
An entity primarily responsible for making the resource
Becker J; Becker C; Abeysekera R; Moir J; Gray M; Shimwela M; Oprescu F
Description
An account of the resource
Background: Midwives working in settings with limited clinical resources experience high rates of very early neonatal deaths. Midwives manage the impact of this grief and trauma almost daily, which may affect patient care and their own well-being. Research aims: To explore how midwives are impacted by and cope with high rates of very early neonatal deaths. To document midwives' insights and local solutions that may reduce very early neonatal deaths in limited resource settings. To document the stories of midwives in order to create awareness and garner support for midwives and their critical work in low resource settings. Methods: Narrative inquiry utilizing semi structured interviews. Twenty-one midwives with at least six months experience who had experienced or witnessed very early neonatal death were interviewed. Data were audio recorded and transcribed, and reflexive thematic analysis of transcripts was conducted. Results and discussion: Three themes were identified: (1) deep sadness resulting from very early neonatal deaths leading to internal struggles; (2) use of spirituality, including prayer and occasional beliefs that unexplainable deaths were 'God's plan'; and (3) development of resilience by seeking solutions, educating themselves, taking accountability and guiding mothers. Participating midwives noted that inadequate staff and high caseloads with limited basic supplies hindered their clinical practice. Participants articulated that they concentrated on active solutions to save babies during labour, such as vigilant foetal rate heart monitoring and partogram. Further, reduction and prevention of very early neonatal death is a complex problem requiring multidisciplinary teams and woman-centred care approaches to address issues contributing to the health of mothers and their new-borns. Conclusions: Midwives' narratives highlighted ways of coping with grief and deep sadness, through prayer, and further education of both mothers and fellow colleagues to achieve better antenatal and intrapartum care and outcomes. This study gave midwives an opportunity for their voices to be heard and to generate solutions or insights that can be shared with colleagues in similar low-resource settings.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3390/children10040705" target="_blank" rel="noreferrer noopener">10.3390/children10040705</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2023 SE5 - Low Resource Setting
Abeysekera R
Becker C
Becker J
Children
Gray M
Midwives
Moir J
Neonatal Death
Oprescu F
Shimwela M
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 4 - Parent Perspectives 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
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/0269216320979153" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/0269216320979153</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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A meta-ethnographic study of fathers' experiences of caring for a child with a life-limiting illness
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
Humans; Child; children; Male; Palliative care; Qualitative Research; *Parents; Anthropology, Cultural; fathers; healthcare; life-limiting; meta-ethnography; *Fathers
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Postavaru, G. I.; Swaby, H.; Swaby, R.
Description
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BACKGROUND: There is a growing body of qualitative studies examining parents' experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting conditions. However, research focusing on fathers' needs remains sparse and is often diluted among a predominant 'mother's voice', raising questions about whether practices in clinical settings meet fathers' needs. AIM: To provide an in-depth assembly of the current state of knowledge around fathers' experiences of caring for their children diagnosed with life-limiting conditions and understand the implications for healthcare services and policies. DESIGN: A meta-ethnography was conducted to synthesise findings from existing qualitative studies exploring fathers' experiences of caring. DATA SOURCES: Four electronic databases (PubMed, PsycINFO, CINAHL and Science Direct) were searched up until April 2020. Qualitative studies exploring fathers' care experience and published in English language were included. The Critical Appraisal Skills Programme (CASP) checklist was employed for study quality appraisal. No temporal limits were used. RESULTS: Sixty-three studies met the inclusion criteria. Thirty life-limiting conditions were included. Based on responses from 496 fathers, a conceptual model was developed which translates key experiences within the fathers' caregiving journeys. The overarching concepts identified were: the paradox of support, challenges in the caring process, 'nobody thinks of men', impact on family life and the fall of the curtain: an irrevocably altered world. These and associated sub-concepts are discussed, with recommendations for future research and practice provided. CONCLUSION: The findings indicate the value of a family-oriented approach to develop psychosocial interventions and support channels for fathers, thus empowering them whilst reducing the care-giving burden on the family unit.
Identifier
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<a href="http://doi.org/10.1177/0269216320979153" target="_blank" rel="noreferrer noopener">10.1177/0269216320979153</a>
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*Fathers
*Parents
2020
2023 SE4 - Parent Perspectives
Anthropology, Cultural
Child
Children
Fathers
healthcare
Humans
Life-limiting
Male
meta-ethnography
Palliative Care
Palliative Medicine
Postavaru, G. I.
Qualitative Research
Swaby, H.
Swaby, R.
-
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"> http://doi.org/</a>
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Title
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Is an Exercise Program for Pediatric Cancer Patients in Palliative Care Feasible and Supportive?-A Case Series
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
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Palliative Care
Creator
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Beller R; Gauß G; Reinhardt D; Götte M
Description
An account of the resource
(1) Background: Growing evidence indicates benefits through exercise programs in pediatric oncology throughout the whole cancer trajectory. This should include palliative care, too. This project analyzes the feasibility of a supervised exercise program offered during hospital and home-based care for children with advanced cancer diagnoses. (2) Methods: Four children (7-13 years old) with advanced cancer diagnoses participated in this project. It consisted of supervised exercise sessions offered once a week (30-90 min), mainly home-based, but also on an in- and outpatient basis. Regular data assessments included psychological and physical capacity-related endpoints and body composition. Details and contents of exercise sessions and adverse events were recorded. (3) Results: Exercise was feasible with 73 ± 9% adherence to the minimum number of planned sessions. The exercise offer was accepted until shortly before death. Effects on fatigue, quality of life and muscular endurance were noted. Participants showed major deviations from age-specific reference values. No exercise-related adverse events occurred. (4) Conclusions: The exercise program was safe, feasible, and might have served as a supportive tool to reduce overall burden. Evaluation of exercise as usual palliative care should be assessed by further studies.
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<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
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2023
2023 SE3 - Oncology
Beller R
Children
Gauß G
Götte M
Palliative Care
Reinhardt D
-
Dublin Core
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.3390/children9060777" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9060777</a>
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Palliative Care for Childhood Cancer
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Children
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; human; quality of life; family; home care; practice guideline; pain; Netherlands; cancer patient; physician; hope; health care quality; hospital care; health care planning; health care access; health care personnel; daily life activity; cancer palliative therapy; evidence based practice; medical education; editorial; nausea; child health care; collaborative care team; vomiting; hematopoietic stem cell transplantation; nurse; disease burden; advanced cancer; cause of death; patient worry; health care need; illness trajectory; childhood cancer/th [Therapy]; personalized cancer therapy
Creator
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Michiels EM
Description
An account of the resource
Cure rates for children with cancer are improving, but often at the cost of quality of life during treatment [...].
Identifier
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<a href="http://doi.org/10.3390/children9060777" target="_blank" rel="noreferrer noopener">10.3390/children9060777</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
2023 SE3 - Oncology
Advanced Cancer
Cancer Palliative Therapy
Cancer Patient
Cause Of Death
Child
Child Health Care
childhood cancer/th [Therapy]
Children
collaborative care team
daily life activity
Disease Burden
Editorial
evidence based practice
Family
Health Care Access
health care need
Health Care Personnel
health care planning
Health Care Quality
Hematopoietic stem cell transplantation
Home Care
Hope
Hospital care
Human
illness trajectory
Medical Education
Michiels EM
Nausea
Netherlands
Nurse
Pain
Palliative Care
patient worry
personalized cancer therapy
Physician
Practice Guideline
Quality Of Life
Vomiting
-
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Title
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2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1016/j.soncn.2023.151474" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.soncn.2023.151474</a>
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A Systematic Review of Educational Interventions to Equip Health and Social Care Professionals to Promote End-of-Life Supportive Care when a Parent with Dependent Children is Dying with Cancer
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Seminars in Oncology Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Parents; Children; End of life; Cancer; Family-centered care; Systematic review
Creator
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Sheehan S; Hanna JR; Drury A; McCance T; Semple CJ; O'Neill C
Description
An account of the resource
OBJECTIVES: This systematic review aimed to determine the content, mode of delivery, assessment, and outcomes of educational interventions to equip health and social care professionals (HSCPs) when delivering end-of-life (EoL) supportive care for parents dying with cancer who have dependent children. DATA SOURCES: The review was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A search strategy was developed with assistance of subject librarians and peer-reviewed using the Peer Review of Electronic Search Strategies tool. A search of MEDLINE OVID, CINAHL, EMBASE, PsycINFO, Web of Science, and ERIC electronic databases and gray literature was conducted. Quality assessment was conducted on included studies. Data synthesis was conducted using a convergent integrated approach. CONCLUSION: The review identified just two educational interventions, highlighting the dearth of educational interventions available to HSCPs to provide supportive care to families when a parent is at EoL with cancer. The identified interventions were of good methodological quality and were positively evaluated by participants, enhancing their confidence to engage in EoL conversations. It is imperative that interventions that use robust evaluation methods are developed and made accessible to HSCPs. IMPLICATIONS FOR NURSING PRACTICE: The review highlights the urgent need for the development of interventions for HSCPs to provide supportive care to families when a parent is at EoL with cancer. This is a fundamental aspect of care, and it is imperative that accessible educational interventions are developed to improve the quality of care and reduce distress for patients and their families.
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<a href="http://doi.org/10.1016/j.soncn.2023.151474" target="_blank" rel="noreferrer noopener">10.1016/j.soncn.2023.151474</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2023 SE3 - Oncology
Cancer
Children
Drury A
End Of Life
Family-centered Care
Hanna JR
McCance T
O'Neill C
Parents
Seminars In Oncology Nursing
Semple CJ
Sheehan S
Systematic Review
-
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Title
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November 2023 List
Text
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Citation List Month
November List 2023
URL Address
<a href="http://doi.org/10.3390/children10081315" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10081315</a>
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Title
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Telehealth Needs and Concerns of Stakeholders in Pediatric Palliative Home Care
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
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Health Services Needs and Demand; Female; Male; Palliative Care; Quality of Health Care; Adult; Telemedicine; Middle Age; Qualitative Studies; Home Health Care; Data Analysis Software; Human; Descriptive Statistics; Pediatric Care; Family Attitudes; Funding Source; Semi-Structured Interview; Patient Attitudes; Quantitative Studies; Pilot Studies; Telehealth
Creator
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Zimmermann J; Heilmann ML; Fisch-Jessen M; Hauch H; Kruempelmann S; Moeller H; Nagel L; Nathrath M; Vaillant V; Voelker T; Deckers MJ
Description
An account of the resource
Abstract Pediatric palliative home care (PPHC) provides care for children, adolescents, and young adults with life-limiting illnesses in their own homes. Home care often requires long travel times for the PPHC team, which is available to the families 24/7 during crises. The complementary use of telehealth may improve the quality of care. In this pilot study we identify the needs and concerns of patients, teams, and other stakeholders regarding the introduction of telehealth. As a first step, focus groups were conducted in three teams. For the second step, semi-structured interviews were conducted with patients and their families (n = 15). Both steps were accompanied by quantitative surveys (mixed methods approach). The qualitative data were analyzed using content analysis. A total of 11 needs were identified, which were prioritized differently. Highest priority was given to: data transmission, video consultation, access to patient records, symptom questionnaires, and communication support. The concerns identified were related to the assumption of deterioration of the status quo. Potential causes of deterioration were thought to be the negative impact on patient care, inappropriate user behavior, or a high level of technical requirements. As a conclusion, we define six recommendations for telehealth in PPHC.
Identifier
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<a href="http://doi.org/10.3390/children10081315" target="_blank" rel="noreferrer noopener">10.3390/children10081315</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
Children
Data Analysis Software
Deckers MJ
Descriptive Statistics
Family Attitudes
Female
Fisch-Jessen M
Funding Source
Hauch H
Health Services Needs And Demand
Heilmann ML
Home Health Care
Human
Kruempelmann S
Male
Middle Age
Moeller H
Nagel L
Nathrath M
November List 2023
Palliative Care
Patient Attitudes
Pediatric Care
Pilot Studies
Qualitative Studies
Quality Of Health Care
Quantitative Studies
Semi-Structured Interview
Telehealth
Telemedicine
Vaillant V
Voelker T
Zimmermann J
-
Dublin Core
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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/10.1017/s1478951523000664" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/s1478951523000664</a>
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Hospital, hospice, or home: A scoping review of the importance of place in pediatric palliative care
Publisher
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Palliative and Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Palliative Care; Children; Pediatric; Palliative care; Hospices; Health care; Place
Creator
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Walker M; Nicolardi D; Christopoulos T; Ross T
Description
An account of the resource
BACKGROUND: Palliative care necessitates questions about the preferred place for delivering care and location of death. Place is integral to palliative care, as it can impact proximity to family, available resources/support, and patient comfort. Despite the importance of place, there is remarkably little literature exploring its role in pediatric palliative care (PPC). OBJECTIVES: To understand the importance and meaning of place in PPC. METHODS: We conducted a scoping review to understand the importance of place in PPC. Five databases were searched using keywords related to "pediatric," "palliative," and "place." Two reviewers screened results, extracted data, and analyzed emergent themes pertaining to place. RESULTS: From 3076 search results, we identified and reviewed 25 articles. The literature highlights hospital, home, and hospice as 3 distinct PPC places. Children and their families have place preferences for PPC and place of death, and a growing number prefer death to occur at home. Results also indicate numerous factors influence place preferences (e.g., comfort, grief, cultural/spiritual practices, and socioeconomic status). SIGNIFICANCE OF RESULTS: Place influences families' PPC decisions and experiences and thus warrants further study. Greater understanding of the importance and roles of place in PPC could enhance PPC policy and practice, as well as PPC environments.
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<a href="http://doi.org/10.1017/s1478951523000664" target="_blank" rel="noreferrer noopener">10.1017/s1478951523000664</a>
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2023
Children
Christopoulos T
Health Care
Hospices
Nicolardi D
Palliative And Supportive Care
Palliative Care
Pediatric
Place
Ross T
September List 2057
Walker M
-
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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/10.1017/s1478951523001153" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/s1478951523001153</a>
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Title
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Parental perspectives on the clinician's approach to serious illness communication: A qualitative study
Publisher
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Palliative and Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Parents; Children; Palliative care; Communication; Qualitative research; Serious illness
Creator
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Mills N; Chapman M; Sutherland I; Gillam L; Collins A
Description
An account of the resource
OBJECTIVES: To explore the perceptions of parents caring for a child with a life-limiting condition on approaches to communication used by clinicians engaging in routine serious illness communication. METHODS: An exploratory qualitative design was used, employing a thematic analysis of data derived through semi-structured interviews which presented hypothetical vignettes of serious illness conversations to elicit parental perspectives. Adult parents of children with a life-limiting condition, in a stable phase of care, known to the Neurodevelopment and Disability Department of a tertiary Children's Hospital in Melbourne, Australia, were purposively sampled to achieve a broad representation of relevant clinical and sociodemographic factors. RESULTS: Eleven parents (72% female) of children aged 7 months to 18 years participated. Two major themes characterized parental perspectives on serious illness communication: "Approaches clinicians can use to lay the foundation for quality communication" including checking in, validation, aligning with hopes and a commitment to listening and being present; and "Approaches clinicians can use to aid the delivery of information" including honesty and compassion, presenting possibilities, providing a plan, and conveying the clinician's experience. SIGNIFICANCE OF RESULTS: This study provides novel insights into the perspectives of parents of children with life-limiting conditions that inform how clinicians may best approach serious illness communication. The findings highlight the need for clinicians working in pediatric health care to be cognizant of parents' needs before and during conversations. Laying the foundation for quality communication is important alongside the approaches outlined that aid in the delivery of information.
Identifier
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<a href="http://doi.org/10.1017/s1478951523001153" target="_blank" rel="noreferrer noopener">10.1017/s1478951523001153</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
Chapman M
Children
Collins A
Communication
Gillam L
Mills N
Palliative And Supportive Care
Palliative Care
Parents
Qualitative Research
September List 2045
Serious Illness
Sutherland I
-
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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/10.3390/children10071179" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10071179</a>
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Pediatric Advance Care Planning: A Scoping Review
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
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pediatric palliative care; scoping review; Advance Care Planning; pediatric advance care planning
Creator
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Lusney N; van Breemen C; Lim E; Pawliuk C; Hussein Z
Description
An account of the resource
To assess current practice and provide a basis for a provincial template, clinicians at a Canadian pediatric hospice reviewed the literature surrounding pediatric advance care planning (pACP) documentation, process, and implementation for children/youth. The scoping review protocol was developed in accordance with the Joanna Briggs Institute methodology for scoping reviews, and was prospectively registered on the Open Science Framework. MEDLINE, Embase, CINAHL, the Web of Science Core Collection, and Google Scholar, as well as sources of unpublished studies and grey literature, were reviewed. Sixty-four articles met the criteria. Fifteen pACP documentation forms/tools were also identified. Overall, the included articles highlighted that pACP should be a structured, collaborative and iterative process between the family and a trusted or relevant healthcare provider, encompassing medical and non-medical issues. Few articles provided insights into specific elements recommended for advance directive forms. Identified strategies for implementation included a structured, step-by-step pACP interventional tool along with ongoing training, mentorship, and defined organizational structures for the clinician. No single specific ACP tool was acknowledged as the gold standard. Use of a pACP tool, along with ongoing provider education and communication skill development, standardized/accessible documentation, and system-wide quality improvement support, were noted as integral components of pACP.
Identifier
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<a href="http://doi.org/10.3390/children10071179" target="_blank" rel="noreferrer noopener">10.3390/children10071179</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
Advance Care Planning
Children
Hussein Z
Lim E
Lusney N
Pawliuk C
pediatric advance care planning
Pediatric Palliative Care
Scoping review
September List 2043
van Breemen C
-
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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/10.3390/children10071167" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10071167</a>
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The Quality of Life of Children Facing Life-Limiting Conditions and That of Their Parents in Belgium: A Cross-Sectional Study
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
Belgium; Quality of Life; outcomes; quality of life; Cross-Sectional Studies; life-limiting conditions; parents; paediatric palliative care; Cesarean Section; children’s palliative outcome scale (CPOS-2); patient-centred outcome measures
Creator
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Friedel M; Aujoulat I; Brichard B; Fonteyne C; Renard M; Degryse JM
Description
An account of the resource
BACKGROUND: Paediatric palliative care (PPC) aims to improve children's quality of life, but this outcome is rarely measured in clinical care. PPC is provided in Belgium through six transmural paediatric liaison teams (PLTs) ensuring continuity of care for children with life-limiting or life-threatening conditions (LLC/LTC). This study aims to measure the quality of life (QoL) of children with LLC/LTC followed-up by PLTs and the QoL of their parents. METHODS: During interviews, an original socio demographic questionnaire, the Children palliative outcome scale-version 2 (CPOS-2), the Fragebogen für Kinder und Jugendliche zur Erfassung der gesundheitsbezogenen Lebensqualität (KINDL) and the Quality of life in life-threatening Illness-Family caregiver (QOLLTI-F) were filled in by PLT members. Statistics were used to investigate significant differences between scores. Results were discussed and interpreted with six PLTs. RESULTS: 73 children aged 1-18 were included in the study. Especially for items focusing on emotional items, children reported their QoL as higher than their parents did. The QoL scores were not significantly associated with the child's condition's severity. CONCLUSIONS: This study provides, for the first time, an overview of the QoL of children and parents followed-up by PLTs in Belgium.
Identifier
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<a href="http://doi.org/10.3390/children10071167" target="_blank" rel="noreferrer noopener">10.3390/children10071167</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
Aujoulat I
Belgium
Brichard B
Cesarean Section
Children
children’s palliative outcome scale (CPOS-2)
Cross-sectional Studies
Degryse JM
Fonteyne C
Friedel M
Life-limiting Conditions
Outcomes
paediatric palliative care
Parents
patient-centred outcome measures
Quality Of Life
Renard M
September List 2037
-
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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/10.3390/children9111700" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9111700</a>
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Long-Term Ventilation in Children with Medical Complexity: A Challenging Issue
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Child; child; human; children with medical complexity; ethics; palliative therapy; review; Ventilators, Mechanical; long term care; Only Child; treatment indication; artificial ventilation; continuous positive airway pressure; invasive ventilation; miscellaneous named groups
Creator
An entity primarily responsible for making the resource
Caldarelli V; Porcaro F; Filippo PD; Attanasi M; Fainardi V; Gallucci M; Mazza A; Ullmann N; Grutta SL
Description
An account of the resource
Children with medical complexity (CMCs) represent a subgroup of children who may have congenital or acquired multisystemic disease. CMCs are frequently predisposed to respiratory problems and often require long-term mechanical ventilation (LTMV). The indications for LTMV in CMCs are increasing, but gathering evidence about indications, titration, and monitoring is currently the most difficult challenge due to the absence of validated data. The aim of this review was to examine the clinical indications and ethical considerations for the initiation, continuation, or withdrawal of LTMV among CMCs. The decision to initiate long-term ventilation should always be based on clinical and ethical considerations and should be shared with the parents.
Identifier
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<a href="http://doi.org/10.3390/children9111700" target="_blank" rel="noreferrer noopener">10.3390/children9111700</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
Artificial Ventilation
Attanasi M
Caldarelli V
Child
Children
Children With Medical Complexity
Continuous Positive Airway Pressure
Ethics
Fainardi V
Filippo PD
Gallucci M
Grutta SL
Human
invasive ventilation
Long Term Care
Mazza A
miscellaneous named groups
Only Child
Palliative Therapy
Porcaro F
Review
September List 2029
treatment indication
Ullmann N
Ventilators, Mechanical
-
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/10.3390/children9030344" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9030344</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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Redirecting Care: Compassionate Management of the Sick or Preterm Neonate at the End of Life
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Infant, Newborn; terminal care; human; palliative therapy; patient care; newborn care; newborn death; pain; philosophy; review; personal experience; distress syndrome; emotionality; parental behavior; health care personnel; family relation; family support; doctor patient relationship; compassionate care; intersectoral collaboration; parent counseling; psychological care
Creator
An entity primarily responsible for making the resource
Wyatt J; Hain R
Description
An account of the resource
The primary moral commitment of medical care has traditionally been based on a belief in the intrinsic value and significance of human life and a desire to protect the most vulnerable from harm. In this respect, the care of newborn infants who are at the border of viability is no different. Despite the intrinsic value of the life of every newborn, all agree that there is no moral duty of doctors to provide every possible treatment where the prognosis is hopeless. Instead, every action and treatment should be orientated towards the best interests of the individual child and towards the minimisation of serious harm. Decisions about the withholding or withdrawal of life-supportive treatment should be made collaboratively between professionals and parents, with discussion starting prior to delivery wherever possible. The goals of neonatal palliative care are to prevent or minimise pain and distressing symptoms and to maximise the opportunity for private, loving interaction between the dying baby and his or her parents and the wider family. Physical contact, gentle stroking, cuddles and tender loving care are of central importance for the dying baby. At the same time, we must provide psychological support for parents and family as they go through the profound and painful life experience of accompanying their baby to death. To enable a baby to die well, pain-free and in the arms of loving parents and carers is not a failure but a triumph of neonatal care.
Identifier
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<a href="http://doi.org/10.3390/children9030344" target="_blank" rel="noreferrer noopener">10.3390/children9030344</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
August List 2052
Children
compassionate care
Distress Syndrome
doctor patient relationship
emotionality
family relation
family support
Hain R
Health Care Personnel
Human
Infant, Newborn
intersectoral collaboration
Newborn Care
Newborn Death
Pain
Palliative Therapy
parent counseling
parental behavior
Patient Care
Personal Experience
Philosophy
Psychological care
Review
Terminal Care
Wyatt J
-
Dublin Core
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Title
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2023 Special Edition 2 - Parent Perspectives 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
2028 SE2 - Parent Perspectives
URL Address
<a href="http://doi.org/10.3390/children9050641" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9050641</a>
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Title
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Using Communication Tools to Explore Young Siblings' Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
bereavement; communication; emotions; palliative care; siblings
Creator
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Kreicbergs U; Nilsson S; Jenholt Nolbris M; Lövgren M
Description
An account of the resource
Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with palliative care needs, and to determine what is important to them. Nine siblings, aged 6-14 years, were interviewed using four different communication tools: See-Hear-Do pictures, including the empty body as a separate element, Bear cards, and words originating from previous sibling research. Data were analyzed using conventional content analysis. Five categories emerged concerning aspects that the siblings described about their situation and things that they found important: being part of a special family; school-a place for leisure, friends, and learning; relentless feelings of guilt and self-blame; losses and separations; and awareness of death-not if, but when. Siblings of children with rare diseases expressed an awareness that their brother or sister would die, although still felt they were part of a special, happy family. Siblings of children with palliative care needs due to an accident described relentless feelings of self-blame and guilt. The needs of siblings may vary depending on the condition that resulted in the ill sibling's palliative care needs.
Identifier
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<a href="http://doi.org/10.3390/children9050641" target="_blank" rel="noreferrer noopener">10.3390/children9050641</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
2028 SE2 - Parent Perspectives
Bereavement
Children
Communication
Emotions
Jenholt Nolbris M
Kreicbergs U
Lövgren M
Nilsson S
Palliative Care
Siblings
-
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.
Citation List Month
June 2022 List
URL Address
<span><a href="https://www.mdpi.com/2227-9067/10/3/482">https://www.mdpi.com/2227-9067/10/3/48210.3390/children10030482</a></span>
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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Components of Perinatal Palliative Care: An Integrative Review
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
Palliative Care
Creator
An entity primarily responsible for making the resource
Dombrecht L; Chambaere K; Beernaert K; Roets E; De Vilder DKM; De Smet G; Roelens K; Cools F
Description
An account of the resource
When a severe diagnosis is made before or after birth, perinatal palliative care (PPC) can be provided to support the infant, parents and involved healthcare providers. An integrative and systematic overview of effectiveness and working components of existing PPC programs was needed. An integrative search was conducted in MEDLINE, Embase, CENTRAL, CINAHL, PsycInfo and Web of Science. Study designs examining the effect of PPC compared to regular care, and (empirical) articles describing the components of care included in existing PPC initiatives were included. Three independent authors reviewed titles, abstracts and full texts against eligibility criteria. PRISMA guidelines were followed; 21.893 records were identified; 69 publications met inclusion criteria. Twelve publications (17.4%) discussed the effect of a PPC program. Other publications concerned the description of PPC programs, most often by means of a program description (22/69; 31.9%), guidelines (14/769; 20.3%) or case study (10/69; 14.5%). Outcome measures envisioned four main target categories: care coordination, parents and family members, care for the fetus/neonate and healthcare providers. No trials exist to date. Analysis of working components revealed components related to changes directed to the policy of the hospital wards and components involving actual care being provided within the PPC program, directed to the fetus or infant, the family, involved healthcare providers or external actors. PPC is a growing research field where evidence consists mainly of descriptive studies and guidelines. The extensive list of possible PPC components can serve as a checklist for developing future initiatives worldwide. PPC includes several important actors: the fetus/infant and their family and included healthcare providers on both maternity and neonatal wards. This leads to a large variety of possible care components. However, while some studies show proof of concept, an evidence base to determine which components are actually effective is lacking.
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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://www.mdpi.com/2227-9067/10/3/482"><span>10.3390/children10030482</span></a>
2023
Beernaert K
Chambaere K
Children
Cools F
De Smet G
De Vilder DKM
Dombrecht L
June 2022 List
Palliative Care
Roelens K
Roets E
-
Dublin Core
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Title
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July 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.1177/10499091231174202" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/10499091231174202</a>
Dublin Core
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Title
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Addressing 10 Myths About Pediatric Palliative Care
Publisher
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American Journal of Hospice and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
cancer; children; end-of-life; myths; pain; Palliative Care; pediatric palliative care
Creator
An entity primarily responsible for making the resource
Sadler K; Khan S; AlGhamdi K; Alyami HH; Nancarrow L
Description
An account of the resource
With advances in biomedical sciences, a growing number of conditions affecting children have evolved from being considered life-limiting to almost chronic diseases. However, improvements in survival rates often come at a cost of increased medical complexity and lengthy hospitalizations, which can be associated with a poorer quality of life. This is where pediatric palliative care (PPC) can play a significant role. PPC is a specialty of healthcare that focuses on the prevention and relief of suffering in children with serious conditions. Unfortunately, despite the well-identified need for PPC services across pediatric specialties, multiple misconceptions persist. Common myths about palliative care are identified and deconstructed in light of the most recent evidenced-based references in the field to provide guidance to healthcare providers to address these. PPC is often associated with end-of-life care, loss of hope, and cancer. Some healthcare providers and parents also believe that information like diagnosis should be withheld from children for their emotional protection. These examples of misconceptions hinder the integration of pediatric palliative care and its additional layer of support and clinical expertise. PPC providers have advanced communication skills, are able to instill hope in the face of uncertainty, are trained to initiate and implement individualized pain and symptom management plans, and understand how to improve the quality of life in children with serious illnesses. Improved awareness about the scope of PPC is needed to ensure that children benefit from the maximum expertise and support throughout their complex health trajectories.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/10499091231174202" target="_blank" rel="noreferrer noopener">10.1177/10499091231174202</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
AlGhamdi K
Alyami HH
American Journal Of Hospice And Palliative Care
Cancer
Children
end-of-life
July List 2023
Khan S
myths
Nancarrow L
Pain
Palliative Care
Pediatric Palliative Care
Sadler K
-
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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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>
Dublin Core
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Title
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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
An entity primarily responsible for making the resource
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
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
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
-
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
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/children8080615" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children8080615</a>
Dublin Core
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Title
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Specialized pediatric palliative care services in pediatric hematopoietic stem cell transplant centers
Publisher
An entity responsible for making the resource available
Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
hematopoietic stem cell transplantation; palliative therapy; advance care planning; article; bereavement counseling; bereavement support; cause of death; child; controlled study; descriptive research; ethics; female; Hematopoietic Stem Cells; home; hospice; hospital; human; in-hospital mortality; major clinical study; male; mortality; Palliative Care; patient referral; pediatric intensive care unit; place of death; relapse; retrospective study; spiritual care; Stem Cell Transplantation
Creator
An entity primarily responsible for making the resource
Mekelenkamp H; Schroder T; Trigoso E; Hutt D; Galimard JE; Kozijn A; Dalissier A; Gjergji M; Liptrott S; Kenyon M; Murray J; Corbacioglu S; Bader P
Description
An account of the resource
Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study aimed to provide insight into current data on the place and cause of death of transplanted children, the available specialized pediatric palliative care services (SPPCS), and what services HSCT professionals feel the SPPCS team should provide. First, a retrospective database analysis on the place and cause of death of transplanted pediatric HSCT patients was performed. Second, a survey was performed addressing the availability of and views on SPPCS among HSCT professionals. Database analysis included 233 patients of whom the majority died in-hospital: 38% in the pediatric intensive care unit, 20% in HSCT units, 17% in other hospitals, and 14% at home or in a hospice (11% unknown). For the survey, 98 HSCT professionals from 54 centers participated. Nearly all professionals indicated that HSCT patients should have access to SPPCS, especially for pain management, but less than half routinely referred to this service at an early stage. We, therefore, advise HSCT teams to integrate advance care planning for pediatric HSCT patients actively, ideally from diagnosis, to ensure timely SPPCS involvement and maximize end-of-life preparation.Copyright © 2021 by the authors. Licensee MDPI, Basel, Switzerland.
Identifier
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<a href="http://doi.org/10.3390/children8080615" target="_blank" rel="noreferrer noopener">10.3390/children8080615</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).
2021
Advance Care Planning
Article
Bader P
Bereavement Counseling
Bereavement Support
Cause Of Death
Child
Children
Controlled Study
Corbacioglu S
Dalissier A
Descriptive Research
Ethics
Female
Galimard JE
Gjergji M
Hematopoietic stem cell transplantation
Hematopoietic Stem Cells
Home
Hospice
Hospital
Human
Hutt D
in-hospital mortality
July List 2023
Kenyon M
Kozijn A
Liptrott S
Major Clinical Study
Male
Mekelenkamp H
Mortality
Murray J
Palliative Care
Palliative Therapy
Patient Referral
Pediatric Intensive Care Unit
Place Of Death
relapse
Retrospective Study
Schroder T
Spiritual Care
Stem Cell Transplantation
Trigoso E
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
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/children10050784" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10050784</a>
Dublin Core
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Ethical Dilemmas in Neonatal Care at the Limit of Viability
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
end-of-life decisions; extremely preterm infants; Infant Newborn; limit of viability; shared decision-making
Creator
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Kornhauser CL; Lucovnik M
Description
An account of the resource
Advances in neonatal care have pushed the limit of viability to incrementally lower gestations over the last decades. However, surviving extremely premature neonates are prone to long-term neurodevelopmental handicaps. This makes ethics a crucial dimension of periviable birth management. At 22 weeks, survival ranges from 1 to 15%, and profound disabilities in survivors are common. Consequently, there is no beneficence-based obligation to offer any aggressive perinatal management. At 23 weeks, survival ranges from 8 to 54%, and survival without severe handicap ranges from 7 to 23%. If fetal indication for cesarean delivery appears, the procedure may be offered when neonatal resuscitation is planned. At a gestational age ≥24 weeks, up to 51% neonates are expected to survive the neonatal period. Survival without profound neurologic disability ranges from 12 to 38%. Beneficence-based obligation to intervene is reasonable at these gestations. Nevertheless, autonomy of parents should also be respected, and parental consent should be sought prior to any intervention. Optimal counselling of parents involves harmonized cooperation of obstetric and neonatal care providers. Every fetus/neonate and every pregnant woman are different and have the right to be considered individually when treatment decisions are being made.
Identifier
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<a href="http://doi.org/10.3390/children10050784" target="_blank" rel="noreferrer noopener">10.3390/children10050784</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
Children
End-of-life Decisions
Extremely Preterm Infants
Infant Newborn
July List 2023
Kornhauser CL
Limit of viability
Lucovnik M
Shared Decision-making
-
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
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/children9030445" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9030445</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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Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases
Publisher
An entity responsible for making the resource available
Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
advance care planning; attitude to illness; caregiver; family centered care; parent; parental attitude; pediatric patient; psychosocial care; rare disease; adult; Advance Care Planning; article; body movement; child care; cohort analysis; collaborative care team; content analysis; conversation; disease burden; family decision making; feasibility study; female; human; human relation; palliative therapy; qualitative analysis; social connectedness; videorecording
Creator
An entity primarily responsible for making the resource
Fratantoni K; Livingston J; Schellinger SE; Aoun SM; Lyon ME
Description
An account of the resource
Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent's understanding of their child's illness, goals of care, and what mattered most to their child from the parent's perspective. Six families completed a feasibility study of the FAmily CEntered (FACE)-Rare pACP intervention. Qualitative content analysis was performed on transcripts of videotaped responses to the Respecting Choices Next Steps pACP Conversation facilitated conversation guide about the goals of care. Codes were grouped into themes, with direct participant quotations representing the themes. Five themes emerged: getting out and moving freely; feeling included and engaged; managing symptoms and disease burden; coordinating care among many care team members; and managing today and planning for the future. In the context of pACP, families reported that what mattered most to their children included the freedom of movement and human connection and engagement, while parents strived to be effective caregivers and advocates for their child with a rare and severely disabling disease.Copyright © 2022 by the authors. Licensee MDPI, Basel, Switzerland.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3390/children9030445" target="_blank" rel="noreferrer noopener">10.3390/children9030445</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).
2022
Adult
Advance Care Planning
Aoun SM
Article
attitude to illness
body movement
Caregiver
Child Care
Children
Cohort Analysis
collaborative care team
Content Analysis
Conversation
Disease Burden
Family Centered Care
Family Decision Making
Feasibility Study
Female
Fratantoni K
Human
Human Relation
July List 2023
Livingston J
Lyon ME
Palliative Therapy
Parent
Parental Attitude
pediatric patient
psychosocial care
Qualitative Analysis
Rare Disease
Schellinger SE
social connectedness
videorecording
-
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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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/children9030322" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9030322</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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"It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric Palliative Care
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
caregiver support; palliative therapy; parent; pediatric patient; adult; article; Australia; clinical monitoring; controlled study; emotion; emotional support; empowerment; family support; feasibility study; female; hospice care; human; male; Palliative Care; psychosocial care; public health; qualitative research; terminal care; tertiary care center; thematic analysis; volunteer
Creator
An entity primarily responsible for making the resource
Aoun SM; Stegmann R; Deleuil R; Momber S; Cuddeford L; Phillips MB; Lyon ME; Gill FJ
Description
An account of the resource
Aims: This feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents. Method(s): The CSNAT (Paediatric) intervention consisted of two assessment visits with the paediatric palliative care team, 2-8 weeks apart, comprising conversations about sources for support in a tertiary children hospital in Western Australia (2018-2019). Audio-recorded telephone interviews were conducted with parents, and inductive thematic analysis was undertaken. Result(s): All 28 parents who were involved in the intervention agreed to be interviewed. Five themes summarised their experience: caregiving challenges, perceived gaps and feelings of isolation; the usefulness and practicality of the systematic assessment; emotional responses to self-reflection; feelings of validation and empowerment; and received supports responsive to their needs. Conclusion(s): Parents appreciated the value of this systematic approach in engaging them in conversations about their needs and solutions to address them. While clinical service support was affirmed by parents, they were left wanting in other areas of practical, psychosocial, and emotional support. Palliative care services need to build stronger partnerships with supportive community networks through compassionate communities volunteer models of care to address the non-clinical needs of these families.Copyright © 2022 by the authors. Licensee MDPI, Basel, Switzerland.
Identifier
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<a href="http://doi.org/10.3390/children9030322" target="_blank" rel="noreferrer noopener">10.3390/children9030322</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).
2022
Adult
Aoun SM
Article
Australia
Caregiver Support
Children
clinical monitoring
Controlled Study
Cuddeford L
Deleuil R
Emotion
emotional support
empowerment
family support
Feasibility Study
Female
Gill FJ
Hospice Care
Human
July List 2023
Lyon ME
Male
Momber S
Palliative Care
Palliative Therapy
Parent
pediatric patient
Phillips MB
psychosocial care
Public Health
Qualitative Research
Stegmann R
Terminal Care
tertiary care center
Thematic Analysis
Volunteer
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
May 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
May List 2023
URL Address
<a href="http://doi.org/10.3390/children10020324" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10020324</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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Do We Need Palliative Care in Pediatric Nephrology? Patients’ and Caregivers’ Disease Experience
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
Nephrology; Palliative Care
Creator
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Kubiak N; Fehrenbach C; Prüfe J; Thumfart J
Description
An account of the resource
Abstract Chronic life-limiting illnesses such as chronic kidney disease (CKD) require integral support to the families concerned in addition to medical care. Palliative care is an option to facilitate families to address future concerns, such as procedures for acute life-threatening complications, or to relieve physical and psychosocial suffering. The exact needs of patients or parents have not yet been investigated. To assess needs in supportive palliative care, we conducted a monocentric qualitative interview study. We included patients 14 to 24 years old as well as parents of younger children (below 14 years) with CKD ≥ stage 3. In total, fifteen interviews were conducted. Data were analyzed with a deductive and descriptive approach using qualitative content analysis as described by Mayring. Sociodemographic data and basic information of disease were collected using questionnaires. In contrast to caregivers, adolescents and young adults do not express worries about their own mortality or reduced life expectancy. Rather, they report about their limitations to everyday life associated with the disease, especially in the areas of school and work. They wish to live a normal life. Caregivers are concerned about the future and the disease trajectory. They also describe difficulties in balancing the management of the disease with other responsibilities such as work and healthy siblings’ needs. Patients and caregivers appear to need a chance to talk about their everyday struggles and disease-related fears and concerns. Talking about their concerns and needs may help deal with their emotions and facilitate acceptance of their situation characterized by a life-limiting disease. Our study confirms the need for psychosocial support in pediatric nephrology to address the needs of the affected families. This can be offered by pediatric palliative care teams.
Identifier
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<a href="http://doi.org/10.3390/children10020324" target="_blank" rel="noreferrer noopener">10.3390/children10020324</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
Children
Fehrenbach C
Kubiak N
May List 2023
Nephrology
Palliative Care
Prüfe J
Thumfart J
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/s12887-022-03632-4" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12887-022-03632-4</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Evaluation of children with severe neurological impairment admitted to hospital with pain and irritability
Publisher
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BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Adolescent; Child; Child, Preschool; Children; Clinical pathway; Emergency Service, Hospital; Hospitalization; Hospitals, Pediatric; Humans; Infant; Infant, Newborn; Pain; Retrospective Studies; Severe neurological impairment; PIUO
Creator
An entity primarily responsible for making the resource
Fishman I; Siden H; Vadeboncoeur C
Description
An account of the resource
BACKGROUND: Pain is the most common symptom reported by caregivers of children with severe neurological impairment (SNI), a descriptive term for children with disorders affecting the neurological system across multiple domains. In SNI, cognition, communication, and motor skills are impaired and other organ systems are impacted. Pain is difficult to identify and treat in children with SNI because of communication impairment. When a clear cause of pain is not determined, the term "Pain and Irritability of Unknown Origin (PIUO)" is used to describe pain-like behaviours. This study explores the clinical care received by children with SNI admitted to hospital after presenting to the emergency department of a tertiary pediatric hospital with pain or irritability. Findings are compared to the approach suggested in the PIUO pathway, an integrated clinical pathway for identifying and treating underlying causes of pain and irritability in children with complex conditions and limited communication. METHODS: Retrospective chart review of children (age 0 to 18 years inclusive) with diagnoses compatible with SNI presenting with pain, irritability, and/or unexplained crying that required hospitalization between January 1st, 2019 and December 31st, 2019. Descriptive statistics were used to analyze the clinical care received by children in whom a source of pain was identified or not. In children for whom no cause of pain was identified, investigations completed were compared to the PIUO pathway. RESULTS: Eight hospital admissions of six unique children were included for data analysis. A cause for pain and irritability was identified and resolved in three patients. In children with PIUO, there were gaps in history taking, physical examination, and investigations that might have allowed a cause of pain and irritability to be found. Pain was assessed using the r-FLACC pain scale and varying medications for pain/irritability were given during each hospital admission. CONCLUSION: Children with SNI admitted to a tertiary pediatric hospital did not undergo a standardized approach to identifying a cause of pain and irritability. Future efforts should explore the effectiveness of the PIUO pathway, a standardized approach to reducing and resolving pain in children with SNI.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12887-022-03632-4" target="_blank" rel="noreferrer noopener">10.1186/s12887-022-03632-4</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).
2022
Adolescent
Bmc Pediatrics
Child
Child, Preschool
Children
Clinical pathway
Emergency Service, Hospital
Fishman I
Hospitalization
Hospitals, Pediatric
Humans
Infant
Infant, Newborn
Pain
PIUO
Retrospective Studies
severe neurological impairment
Siden H
Vadeboncoeur C
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2021 Special Edition 1 - Low Resource Settings
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
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1111/tmi.13529" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/tmi.13529</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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Coronavirus Disease-19 Deaths among Children and Adolescents in an Area of Northeast, Brazil: Why So Many?
Publisher
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Tropical Medicine and International Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Child; Adolescent; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Comorbidity; Children; Intensive Care Units; Age Distribution; Adolescents; Hospitalization/statistics & numerical data; Brazil/epidemiology; Mortality; deaths; Covid-19; mortality; Deaths; adolescents; children; covid-19; COVID-19/mortality
Creator
An entity primarily responsible for making the resource
de Siqueira ALA; Cristina FVS; Lima SPR; Santana SV; Cristina FLD; Eduardo CL; Queiroz GR
Description
An account of the resource
OBJECTIVE: To describe COVID-19 deaths among children and adolescents in Sergipe, Brazil. METHODS: Ecological study of all COVID-19 reported cases and deaths occurring in children and adolescents <19 years of age in Sergipe reported by the health surveillance and mortality information systems of Sergipe's Health Secretary and hospital records. RESULTS: 37 deaths of children <19 years old were reported up to 30(th) September 2020, corresponding to 4.87 deaths for 100,000 population <19 years old. Most deaths occurred among infants (44.1/100,000), and this age group had the highest case fatality rate (15.3 %). Most children had comorbidities such as chronic neurological diseases (n=7; 19%) and prematurity (n=4; 11%). Most children who died (n=18; 49%) were not admitted to intensive care units (ICU). CONCLUSION: COVID-19 mortality in children and adolescents in Sergipe was higher than in other Brazilian states and in high-income countries. A large proportion of the deaths occurred among children with co-morbidities and a minority of children were admitted to ICU, reflecting the limited provision of such beds in the State. Newborns and infants are a high-risk group that must have priority in health public policy.
Identifier
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<a href="http://doi.org/10.1111/tmi.13529" target="_blank" rel="noreferrer noopener">10.1111/tmi.13529</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).
2020
2021 Special Edition 1 - Low Resource Settings
Adolescent
Adolescents
Age Distribution
Brazil/epidemiology
Child
Child Preschool
Children
Comorbidity
COVID-19
COVID-19/mortality
Cristina FLD
Cristina FVS
de Siqueira ALA
deaths
Eduardo CL
Female
Hospitalization/statistics & numerical data
Humans
Infant
Infant Newborn
Intensive Care Units
Lima SPR
Male
Mortality
Queiroz GR
Santana SV
Tropical Medicine & International Health
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2021 Special Edition 1 - Low Resource Settings
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
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1177/2333794x211043061" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/2333794x211043061</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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Exploring Health Professionals' Experiences With a Virtual Learning and Mentoring Program (Project ECHO) on Pediatric Palliative Care in South Asia
Publisher
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Global Pediatric Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
palliative care; hospice care; children; medical education; distance learning
Creator
An entity primarily responsible for making the resource
Doherty M; Modanloo S; Evans E; Rowe J; Newhook D; Palat G; Archibald D
Description
An account of the resource
Project ECHO (Extension of Community Healthcare Outcomes) is an innovative model of online education which has been proposed to enhance access to palliative care in resource-limited settings. There is limited literature describing how health care providers in low-and middle-income countries benefit from and learn from this type of training. This qualitative description study explores the learning experiences of participants in a Project ECHO program on pediatric palliative care in South Asia through focus group discussions. Discussions were transcribed, coded, independently verified, and arranged into overarching themes. We identified learning themes including the importance of creating a supportive learning community; the opportunity to share ideas and experiences; gaining knowledge and skills, and access to additional learning materials. Designing future programs to ensure a supportive and interactive learning community with attention cultural challenges may enhance learning from future Project ECHO programs.
Identifier
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<a href="http://doi.org/10.1177/2333794x211043061" target="_blank" rel="noreferrer noopener">10.1177/2333794x211043061</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).
2021
2021 Special Edition 1 - Low Resource Settings
Archibald D
Children
distance learning
Doherty M
Evans E
Global Pediatric Health
Hospice Care
Medical Education
Modanloo S
Newhook D
Palat G
Palliative Care
Rowe J
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2022 Special Edition 4 - Low Resource Setting 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
2022 Special Edition Low Resource Setting Issue
URL Address
<a href="http://doi.org/10.3390/children9060838" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9060838</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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Using EmPalPed—An Educational Toolkit on Essential Messages in Palliative Care and Pain Management in Children—As a Strategy to Promote Pediatric Palliative Care
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
education; healthcare professional; low-income countries; middle-income countries; pain assessment; pediatric palliative care; physicians
Creator
An entity primarily responsible for making the resource
García-Quintero X; Claros-Hulbert A; Tello-Cajiao ME; Bolaños-Lopez JE; Cuervo-Suárez MI; Durán MGG; Gomez Garcia W; McNeil M; Baker JN
Description
An account of the resource
Background: Most children needing palliative care (PC) live in low- and middle-income countries. In Colombia, pediatric palliative care (PPC) knowledge among healthcare professionals (HCPs) is lacking as PPC is not included in the educational curricula of healthcare programs. Therefore, specific training that improves knowledge of HCPs and access to PC for children and their families is needed. To address this gap, we organized and conducted the Essential Messages in Palliative Care and Pain Management in Children (EmPalPed), an educational toolkit to increase awareness and promote essential knowledge in PPC for low- and middle-income countries. Methodology: The EmPalPed toolkit consisted of a 5-h virtual workshop with small working groups of HCPs caring for children with life-threatening conditions such as cancer. The toolkit was organized along five key domains: (1) PC as it relates to the concept of quality of life (QoL), (2) effective communication, (3) addressing pain management as a top priority, (4) providing end-of-life care, and (5) access to high-quality PC as a fundamental human right. The workshop activities included different educational strategies and tools (e.g., a pocket guide for pain assessment and management, a PPC booklet, a quick guide for communicating bad news, role playing, and discussions of clinical cases). Results: A total of 145 HCPs from 22 centers were trained. The post-test analysis for HCPs showed that attitude and knowledge about communication (p < 0.001), pain assessment (p < 0.001), first-line opioid of choice in children (p < 0.001), and palliative sedation (p < 0.001) had positive and statistically significant changes from the pre-test analysis. Discussion: This study supported the notion that the EmPalPed educational toolkit is an effective mechanism for raising awareness regarding PPC as well as providing training in many of the key aspects of PPC. The EmPalPed training approach should be studied beyond this setting, and the impact should be measured longitudinally.
Identifier
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<a href="http://doi.org/10.3390/children9060838" target="_blank" rel="noreferrer noopener">10.3390/children9060838</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).
2022
2022 Special Edition Low Resource Setting Issue
Baker JN
Bolaños-Lopez JE
Children
Claros-Hulbert A
Cuervo-Suárez MI
Durán MGG
Education
García-Quintero X
Gomez Garcia W
Healthcare Professional
low-income countries
McNeil M
middle-income countries
Pain Assessment
Pediatric Palliative Care
Physicians
Tello-Cajiao ME
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2022 Special Edition 3 - 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
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1177/23743735221106589" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/23743735221106589</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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Listening to Parents of Children With Cancer-Between Life and its end
Publisher
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Journal of Patient Experience
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Creator
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Manor-Binyamini I; Schreiber-Divon M
Description
An account of the resource
This study aimed to explore and provide an in-depth insight into the experience and perceptions of parents to children with cancer at the end of life (EOL). A sample of 15 parents of children (aged 2-18) with cancer participated in semi-structured interviews in an oncology department of an Israeli hospital. Data were analyzed using a phenomenological thematic analysis approach. The findings that emerged revealed: (a) the cultural aspect of the Israeli society of the importance of family and of the children within the family, (b) the parents' unique way of coping, of holding a dual awareness, and (c) emphasizing that hope and support are necessary components for parents' ability to cope with their child having terminal cancer, at the EOL. A number of important practical recommendations can be made for professionals treating child facing the EOL with cancer and their families. First, understanding the "double awareness" developed by parents of children facing with EOL cancer. Second, there is significance to bring the medical staff closer to the patient's bed, which is to say, training medical staff in open communication on this subject. Third, it is recommended to construct intervention programs that would accompany the whole family and not just the parents. Fourth, there is some necessity to train healthcare teams working in pediatric oncology wards and providing palliative care, to teach them how to help people hold on hope and to evaluate hope in parents of children at the EOL.
Identifier
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<a href="http://doi.org/10.1177/23743735221106589" target="_blank" rel="noreferrer noopener">10.1177/23743735221106589</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
2022 Special Edition 3 - Oncology List
Cancer
Children
End Of Life
Experience
Hope
Journal of Patient Experience
Manor-Binyamini I
Palliative Care
Parents
perceptions
Schreiber-Divon M
Social Support
-
Dublin Core
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Title
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2022 Special Edition 3 - 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
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1007/s12519-022-00600-x" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s12519-022-00600-x</a>
Dublin Core
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Title
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Pediatric palliative care for children with cancer: a concept analysis using Rodgers' evolutionary approach
Publisher
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World Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Creator
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Vasli P; Karami M; AsadiParvar-Masouleh H
Description
An account of the resource
BACKGROUND: Providing access to pediatric palliative care (PPC) for children living with a serious illness, such as cancer, is of critical importance, although this specialized intervention, as a novel concept, still seems vague and complicated. The present study analyzed the concept of PPC for children with cancer. METHODS: Rodgers' evolutionary method was employed for the concept analysis. Articles on PPC, particularly those for children suffering from cancer, published between 2010 and 2021 were searched in valid academic research databases. The inclusion criteria for the full-text articles were based on the characteristics, antecedents, and consequences of PPC for children with cancer. RESULTS: In total, 19 relevant articles were selected and then reviewed and analyzed after applying the inclusion criteria and the final sampling. The analysis of the concept of PPC for children affected with cancer revealed four characteristics, including "PPC as holistic and integrated care", "PPC as patient- and family-centered care", "PPC as early-start continuous care", and "PPC as interdisciplinary and team-based care". Some effective factors could also act as antecedents for this concept, i.e., health care providers' training and expertise as well as human resources and financing. Moreover, improved quality of life, symptom reduction, and coordination between patient care and family support were among the PPC consequences for such children. CONCLUSIONS: The study results demonstrated that delivering PPC to children with cancer demanded a comprehensive view of its various dimensions. Furthermore, numerous factors need to be delineated for its accurate and complete implementation.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s12519-022-00600-x" target="_blank" rel="noreferrer noopener">10.1007/s12519-022-00600-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).
2022
2022 Special Edition 3 - Oncology List
AsadiParvar-Masouleh H
Cancer
Children
Karami M
Palliative Care
survivor
Vasli P
World Journal of Pediatrics
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
February 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
February List 2023
URL Address
<a href="http://doi.org/10.1017/s0963180122000457" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/s0963180122000457</a>
Dublin Core
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Title
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Should the Dutch Law on Euthanasia Be Expanded to Include Children?
Publisher
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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
2022
Subject
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Children; End-of-life decisions; Euthanasia; Pro-Con Debate
Creator
An entity primarily responsible for making the resource
Verhagen A; Buijsen M
Description
An account of the resource
The 2002 Dutch Euthanasia law applies to patients aged 12 years and older. Developments in end-of-life care and decision-making in the last decade have sparked the debate about usefulness and necessity to extend euthanasia to include children under 12 years of age. This paper describes two opposite positions: the affirmative position of a pediatrician and expert in pediatric palliative care and the negative position of a jurist and specialist in health law.
Identifier
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<a href="http://doi.org/10.1017/s0963180122000457" target="_blank" rel="noreferrer noopener">10.1017/s0963180122000457</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
Buijsen M
Cambridge Quarterly of Healthcare Ethics
Children
End-of-life Decisions
Euthanasia
February List 2023
Pro-Con Debate
Verhagen A
-
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Title
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February 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
February List 2023
URL Address
<a href="http://doi.org/10.3390/children8050321" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children8050321</a>
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Title
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Lessons in Stories: Why Narrative Medicine Has a Role in Pediatric Palliative Care Training
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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narrative medicine; pediatric palliative care; reflection; training
Creator
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Lanocha N
Description
An account of the resource
Narrative medicine is introduced and explored as a potential tool for developing competency in medical training, including reduction of burnout, sustaining empathy, and allowing for reflective practice. Developing cultural humility, communication skills, ethics, community building, and advocacy are also reviewed as domains that may be bolstered by training in narrative. Applications specific to pediatric palliative care are suggested, along with avenues for further research.
Identifier
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<a href="http://doi.org/10.3390/children8050321" target="_blank" rel="noreferrer noopener">10.3390/children8050321</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
Children
February List 2023
Lanocha N
narrative medicine
Pediatric Palliative Care
Reflection
Training
-
Dublin Core
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Title
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2023 Special Edition 1 - Parent Perspectives 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
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1080/23294515.2018.1430709" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/23294515.2018.1430709</a>
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Title
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Children's perspectives on the benefits and burdens of research participation
Publisher
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AJOB Empirical Bioethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
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Barned C; Dobson J; Stintzi A; Mack D; O'Doherty KC
Description
An account of the resource
BACKGROUND: Participation in research is associated with benefits and burdens for individual research participants. Children living with a chronic illness are considered particularly vulnerable as they are already burdened with symptoms of their illness. In particular contexts, such as learning health care systems (LHS), where research and clinical care are integrated, children with chronic illnesses may be asked to participate in research related to their illness. A growing body of literature has focused on children's perspectives as research subjects; however, a relatively understudied aspect concerns children's experiences of research in clinics where they are also patients. METHODS: We interviewed 25 Canadian children and adolescents living with inflammatory bowel disease (IBD) about their experiences of research participation. RESULTS: Our participants described aspects of the research process and particular experiences as benefits and others as burdens. Benefits included helping others, receiving incentives, receiving the results of previous studies, and participating in fun activities. Burdens included the time required for particular types of research, physical and psychological discomfort, and feelings of obligation. CONCLUSIONS: Our study describes the experiences of children participating in research at a site that integrates research and clinical care. Our participants described experiences that often go unreported (such as feelings of obligation); we mention these as important considerations to be mindful of when interacting with children as (potential) research participants in an LHS and when thinking about research ethics protocols or the assent/consent process.
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<a href="http://doi.org/10.1080/23294515.2018.1430709" target="_blank" rel="noreferrer noopener">10.1080/23294515.2018.1430709</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
2023 SE1 - Parent Perspectives
Adolescent
AJOB empirical bioethics
Attitude
Barned C
benefits burdens
Canada
Child
Child Health
Children
Chronic Disease
Delivery of Health Care
Dobson J
Emotions
Ethics
Female
health care systems
Humans
Inflammatory Bowel Diseases
Informed Consent By Minors/psychology
Learning
Mack D
Male
Motivation
O'Doherty KC
Patient Participation
psychology Qualitative Research
Research
Research Subjects
Stintzi A
-
Dublin Core
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Title
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January 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
January List 2023
URL Address
<a href="http://doi.org/10.3390/children9121887" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9121887</a>
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Title
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Palliative Sedation Therapy in Pediatrics: An Algorithm and Clinical Practice Update
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Palliative; Sedation
Creator
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Cuviello A; Johnson LM; Morgan K; Anghelescu DL; Baker JN
Identifier
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<a href="http://doi.org/10.3390/children9121887" target="_blank" rel="noreferrer noopener">10.3390/children9121887</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
Anghelescu DL
Baker JN
Children
Cuviello A
January List 2023
Johnson LM
Morgan K
Palliative
Sedation
-
Dublin Core
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Title
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November 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2022 List
URL Address
<a href="http://doi.org/10.1007/s00431-022-04566-w" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00431-022-04566-w</a>
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Title
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Achieving Child-Centred Care for Children and Young People with Life-Limiting and Life-Threatening Conditions-A Qualitative Interview Study
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European Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Family/Psychology; Parents/Psychology; Adolescent; Child; Child Care; Children; End of Life Care; Humans; Normality; Paediatrics; Palliative Care; Qualitative Research; Social Support; Symptom Assessment
Creator
An entity primarily responsible for making the resource
Coombes L; Braybrook D; Roach A; Scott H; Harðardóttir D; Bristowe K; Ellis-Smith C; Bluebond-Langner M; Fraser LK; Downing J; Farsides B; Murtagh FEM; Harding R
Description
An account of the resource
This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children's hospices in the UK. Verbatim transcripts were analysed using framework analysis. A total of 106 participants were recruited: 26 children (5-17 years), 40 parents (of children 0-17 years), 13 siblings (5-17 years), 15 health and social care professionals, 12 commissioners. Participants described many inter-related symptoms, concerns, and care priorities impacting on all aspects of life. Burdensome symptoms included pain and seizures. Participants spoke of the emotional and social impacts of living with life-limiting conditions, such as being able to see friends, and accessing education and psychological support. Spiritual/existential concerns included the meaning of illness and planning for an uncertain future. Data revealed an overarching theme of pursuing 'normality', described as children's desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality. CONCLUSION: Children with life-limiting conditions and their families experience a wide range of inter-related symptoms, concerns, and care priorities. A holistic, child-centred approach to care is needed, allowing focus on pursuit of normal childhood activities. Improvements in accessibility, co-ordination, and availability of health services are required to achieve this. WHAT IS KNOWN: • Existing evidence regarding symptoms, concerns, and care priorities for children with life-limiting conditions is largely limited to proxy-reported data and those with a cancer diagnosis. • Child-centred care provision must be directed by children's perspectives on their priorities for care. WHAT IS NEW: • Social and educational activities are more important to children with life-limiting conditions than their medical concerns. • A holistic approach to care is required that extends beyond addressing medical needs, in order to support children with life-limiting conditions to focus on pursuit of normal childhood activities.
Identifier
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<a href="http://doi.org/10.1007/s00431-022-04566-w" target="_blank" rel="noreferrer noopener">10.1007/s00431-022-04566-w</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).
Adolescent
Child
Child Care
End of Life Care
Paediatrics
Palliative Care
Qualitative Research
2022
Bluebond-Langner M
Braybrook D
Bristowe K
Children
Coombes L
Downing J
Ellis-Smith C
European Journal of Pediatrics
Family/psychology
Farsides B
Fraser LK
Harding R
Harðardóttir D
Humans
Murtagh FEM
Normality
November 2022 List
Parents/psychology
Roach A
Scott H
Social Support
Symptom Assessment
-
Dublin Core
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Title
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December 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
December List 2022
URL Address
<a href="http://doi.org/10.3390/children9101594" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9101594</a>
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Title
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Extremely Preterm Babies-Legal Aspects and Palliative Care at the Border of Viability
Publisher
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Children
Date
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2022
Subject
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court decision; extremely preterm babies; palliative care; rights of parents; viability
Creator
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Dettmeyer R
Description
An account of the resource
There are various legal considerations and rare decisions of courts in western countries concerning palliative care and the border of viability in cases of extremely preterm babies. Nevertheless, on the one hand, regulations and decisions of courts describe the conditions physicians have to accept. On the other hand, courts are also able to accept that every case can be special, and needs a unique answer. Therefore, the framework can be described as well as the medical disciplines, which should be involved in a particular case.
Identifier
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<a href="http://doi.org/10.3390/children9101594" target="_blank" rel="noreferrer noopener">10.3390/children9101594</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
Children
court decision
December List 2022
Dettmeyer R
extremely preterm babies
Palliative Care
rights of parents
Viability
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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October 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
October 2022 List
URL Address
<a href="http://doi.org/10.3390/children9081115">http://doi.org/10.3390/children9081115</a>
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Home-Based Care for Children with Serious Illness: Ecological Framework and Research Implications
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Children
Date
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2022
Creator
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Boyden JY; Hill DL; LaRagione G; Wolfe J; Feudtner C
Identifier
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<a href="http://doi.org/10.3390/children9081115">10.3390/children9081115</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
Boyden JY
Children
Feudtner C
Hill DL
LaRagione G
October 2022 List
Wolfe J