2
40
1703
-
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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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/10.1001/jamanetworkopen.2022.51496" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamanetworkopen.2022.51496</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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Ideal vs Actual Timing of Palliative Care Integration for Children With Cancer in Latin America
Publisher
An entity responsible for making the resource available
JAMA Network Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Child; Female; Palliative Care; Quality of Life; Physicians; Only Child; Latin America; Neoplasms/therapy
Creator
An entity primarily responsible for making the resource
McNeil MJ; Ehrlich B; Wang H; Bustamante M; Dussel V; Friedrich P; Garcia Quintero X; Gillipelli SR; Gómez García W; Graetz D; Kaye EC; Metzger M; Sabato Danon CV; Devidas M; Baker JN; Agulnik A
Description
An account of the resource
IMPORTANCE: Early integration of pediatric palliative care (PPC) for children with cancer is critical for the quality of life of both patient and family. To improve access to PPC in resource-limited settings, barriers to early integration must be understood. OBJECTIVES: To evaluate the ideal vs actual timing of PPC integration for children with cancer and to uncover barriers to early integration identified by physicians in Latin America. DESIGN, SETTING, AND PARTICIPANTS: The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey was distributed electronically from August 1, 2020, to January 31, 2021, to physicians who treat children with cancer in 17 countries in Latin America. MAIN OUTCOMES AND MEASURES: The ADAPT survey queried for understanding of ideal vs actual timing of PPC for children with cancer and for identification of barriers to PPC integration. Descriptive statistics were used to summarize the data. For secondary analyses, a comparison of the associations of previous palliative care training with physician specialty was performed using the Pearson χ2 test or the Fisher exact test. The McNemar test was used to assess responses regarding the actual vs ideal timing of PPC consultation. Analysis of variance was used to compare mean values for perceived barriers by country income level. Answers to open-ended questions were analyzed qualitatively. RESULTS: A total of 831 physicians (578 women [69.6%]; 275 physicians [33.1%] aged <35 years and 556 physicians [66.9%] aged ≥35 years) from 17 countries participated, with an overall response rate of 37.9% (831 of 2193) and a median country response rate of 51.4% (range, 22.2%-88.9%). Most respondents (572 [68.8%]) said that PPC should be involved from diagnosis, but only 117 (14.1%) stated that this occurred at their institution (P < .001). The most significantly ranked barriers to PPC were lack of home-based services (713 [85.8%]), personnel (654 [78.7%]), and knowledge about PPC (693 [83.4%]), along with physician (676 [81.3%]) and family (603 [72.6%]) discomfort about PPC involvement. In addition, these barriers were rated as more important in lower-middle income countries compared with upper-middle income countries and high-income countries. CONCLUSIONS AND RELEVANCE: This study highlights the discrepancy between ideal and actual timing of PPC for children with cancer and barriers to early PPC integration in Latin America. Interventions addressing access to PPC resources, didactic training, and clinical education (with a particular focus on equitable access to basic resources and support) are critical to improve the timing and quality of PPC in the region.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jamanetworkopen.2022.51496" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2022.51496</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2023 SE5 - Low Resource Setting
Agulnik A
Baker JN
Bustamante M
Child
Devidas M
Dussel V
Ehrlich B
Female
Friedrich P
Garcia Quintero X
Gillipelli SR
Gomez Garcia W
Graetz D
Humans
JAMA Network Open
Kaye EC
Latin America
McNeil MJ
Metzger M
Neoplasms/therapy
Only Child
Palliative Care
Physicians
Quality Of Life
Sabato Danon CV
Wang H
-
Dublin Core
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Title
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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/10.1089/pmr.2022.0037" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/pmr.2022.0037</a>
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Title
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Assessing the Need for Pediatric Palliative Care in the Six Arab Gulf Cooperation Council Countries
Publisher
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Palliative Medicine Reports
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; Palliative Care; article; female; human; male; quality of life; palliative therapy; human experiment; funding; mortality; prevalence; incidence; data source; Arab; Arabs; vocational education
Creator
An entity primarily responsible for making the resource
Alotaibi Q; Dighe M
Description
An account of the resource
Background: Palliative care is an essential element of universal health coverage. However, palliative care services, particularly pediatric palliative care (PPC) services, are still inadequately developed in many countries, not least members of the Gulf Cooperation Council (GCC) (Bahrain, Kuwait, Oman, Qatar, Saudi Arabia, and the United Arab Emirates). Advocating for palliative care services requires data-driven estimates of the number of patients needing these services. Objective(s): To estimate the number of children living with life-threatening illnesses in the GCC countries requiring specialist and/or generalist palliative care service provision. Method(s): Descriptive analysis of published cross-sectional epidemiological data. Subjects were from general and age-specific populations from individual GCC countries. The quantitative data on child population and mortality were collected from 2019 primary and secondary data sources. The need for PPC was estimated using mortality, incidence, and prevalence data from the Institute for Health Metrics and the Global Cancer Observatory. Result(s): Our conservative analysis revealed that just under 22,000 children needed PPC in GCC countries in 2019, a minimum of 17.5 for every 10,000 children. Discussion(s): There is a significant need for PPC services, suggesting that the medical needs of the pediatric population are currently not being fully met. Nationwide PPC services are essential to improve the quality of life of thousands of children in GCC countries by changing policies, professional education, and providing funding to palliative programs. To our best knowledge, this is the first study to highlight the clear and urgent need for the development of PPC services in the GCC countries. Copyright © Qutaibah Alotaibi and Manjiri Dighe MD 2023; Published by Mary Ann Liebert, Inc. 2023.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/pmr.2022.0037" target="_blank" rel="noreferrer noopener">10.1089/pmr.2022.0037</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2023 SE5 - Low Resource Setting
Alotaibi Q
Arab
Arabs
Article
Child
data source
Dighe M
Female
Funding
Human
Human Experiment
Incidence
Male
Mortality
Palliative Care
Palliative Medicine Reports
Palliative Therapy
Prevalence
Quality Of Life
vocational education
-
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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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/10.1080/07357907.2022.2141771" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/07357907.2022.2141771</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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Real World Presentation and Treatment Outcomes with a Predominant Induction Chemotherapy Based Approach in Nasopharyngeal Carcinoma: A Sixteen Year Report from a Teaching Hospital in India
Publisher
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Cancer Investigation
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; adult; article; cohort analysis; female; human; major clinical study; male; retrospective study; aged; hospitalization; India; follow up; cancer recurrence; overall survival; adolescent; hearing impairment; diplopia; adjuvant therapy; smoking; multiple cycle treatment; overall response rate; progression free survival; thrombocytopenia; headache; diarrhea; histopathology; intensity modulated radiation therapy; anemia; vomiting; cancer staging; teaching hospital; palliative chemotherapy; carboplatin/cb [Drug Combination]; carboplatin/dt [Drug Therapy]; cisplatin/ae [Adverse Drug Reaction]; cisplatin/cb [Drug Combination]; cisplatin/dt [Drug Therapy]; gemcitabine/dt [Drug Therapy]; paclitaxel/cb [Drug Combination]; paclitaxel/dt [Drug Therapy]; treatment outcome; cyclophosphamide/cb [Drug Combination]; cyclophosphamide/dt [Drug Therapy]; mucosa inflammation; antiemetic agent; treatment interruption; date of death; survival prediction; neck dissection; hypothyroidism; induction chemotherapy; nasopharynx carcinoma/dt [Drug Therapy]; nasopharynx carcinoma/rt [Radiotherapy]; nasopharynx carcinoma/su [Surgery]; albumin/ec [Endogenous Compound]; bone metastasis; capecitabine/dt [Drug Therapy]; cervical lymph node; chemoradiotherapy; cisplatin/to [Drug Toxicity]; cobalt therapy; cranial nerve paralysis; distant metastasis; docetaxel/cb [Drug Combination]; docetaxel/dt [Drug Therapy]; dysphasia; epirubicin/cb [Drug Combination]; epirubicin/dt [Drug Therapy]; exophthalmos; febrile neutropenia; fluorouracil/cb [Drug Combination]; fluorouracil/dt [Drug Therapy]; liver metastasis; lung metastasis; neck swelling; neutropenia; nose obstruction; peripheral neuropathy; primary tumor/rt [Radiotherapy]; radiotherapy dosage; salvage therapy; spinal cord; toxicity/si [Side Effect]; trismus; xerostomia
Creator
An entity primarily responsible for making the resource
Gogi R; Sharma A; Mohanti BK; Pramanik R; Bhasker S; Biswas A; Thakar A; Singh AC; Sikka K; Kumar R; Thulkar S; Bahadur S
Description
An account of the resource
Introduction: Nasopharyngeal carcinoma (NPC) is a rare malignancy in India except in north-eastern states. We present our institutional experience of 16 years highlighting management, outcomes, responses and toxicities. Material(s) and Method(s): NPC patients registered at our center during the period of 2000-2015. The primary objective of the study was to assess the overall survival (OS). Secondary outcome included determinations of response rates, progression free survival (PFS) and to assess treatment-related toxicity (CTCAE v4.0). Institute ethics committee approval was obtained prior to initiation of this study. Result(s): Data was retrieved from complete records of 222 patients out of 390 registered during study period. There were 163 males (73.4%) and 59 females (26.6%) with a male to female ratio of 2.8:1. The median age was 35 years (range 6-73). Only 5.6% (n = 12) presented in early-stage disease (stage I and II) while 89.6% (n = 199) were advanced stage (stage III, IVA, IVB). Five patients (2.2%) presented as metastatic disease. Majority of patients were treated with induction chemotherapy followed by concurrent chemoradiation (CCRT) {76.1%, n = 169}. Relapses were documented in 10.4% patients. 5% patients had loco-regional relapse while distant metastases were seen in 4% patients. The 3-year PFS and OS rates are 60.9% and 68.4%, respectively. Achieving a CR predicted superior OS on multivariate analysis. Conclusion(s): NPC is a rare malignancy and majority presented with advanced stages. This data outlines our experience and outcomes with a predominantly induction chemotherapy followed by definitive CCRT based approach.Copyright © 2022 Taylor & Francis Group, LLC.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/07357907.2022.2141771" target="_blank" rel="noreferrer noopener">10.1080/07357907.2022.2141771</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
adjuvant therapy
Adolescent
Adult
Aged
albumin/ec [Endogenous Compound]
Anemia
antiemetic agent
Article
Bahadur S
Bhasker S
Biswas A
bone metastasis
Cancer Investigation
Cancer Recurrence
Cancer Staging
capecitabine/dt [Drug Therapy]
carboplatin/cb [Drug Combination]
carboplatin/dt [Drug Therapy]
cervical lymph node
chemoradiotherapy
Child
cisplatin/ae [Adverse Drug Reaction]
cisplatin/cb [Drug Combination]
cisplatin/dt [Drug Therapy]
cisplatin/to [Drug Toxicity]
cobalt therapy
Cohort Analysis
cranial nerve paralysis
cyclophosphamide/cb [Drug Combination]
cyclophosphamide/dt [Drug Therapy]
date of death
Diarrhea
diplopia
distant metastasis
docetaxel/cb [Drug Combination]
docetaxel/dt [Drug Therapy]
dysphasia
epirubicin/cb [Drug Combination]
epirubicin/dt [Drug Therapy]
exophthalmos
febrile neutropenia
Female
fluorouracil/cb [Drug Combination]
fluorouracil/dt [Drug Therapy]
Follow Up
gemcitabine/dt [Drug Therapy]
Gogi R
Headache
hearing impairment
Histopathology
Hospitalization
Human
hypothyroidism
India
induction chemotherapy
Intensity Modulated Radiation Therapy
Kumar R
liver metastasis
lung metastasis
Major Clinical Study
Male
Mohanti BK
mucosa inflammation
multiple cycle treatment
nasopharynx carcinoma/dt [Drug Therapy]
nasopharynx carcinoma/rt [Radiotherapy]
nasopharynx carcinoma/su [Surgery]
neck dissection
neck swelling
Neutropenia
nose obstruction
overall response rate
Overall Survival
paclitaxel/cb [Drug Combination]
paclitaxel/dt [Drug Therapy]
palliative chemotherapy
peripheral neuropathy
Pramanik R
primary tumor/rt [Radiotherapy]
progression free survival
Radiotherapy Dosage
Retrospective Study
Salvage Therapy
Sharma A
Sikka K
Singh AC
Smoking
Spinal cord
survival prediction
teaching hospital
Thakar A
thrombocytopenia
Thulkar S
toxicity/si [Side Effect]
treatment interruption
Treatment Outcome
trismus
Vomiting
xerostomia
-
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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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/10.25259/IJPC_20_2021" target="_blank" rel="noreferrer noopener"> http://doi.org/10.25259/IJPC_20_2021</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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Setting-up a Supportive and Palliative Care Service for Children with Life-threatening Illnesses in Maharashtra -- Children's Palliative Care Project in India
Publisher
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Indian Journal of Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Collaboration; Child; Pain; Hospitals Pediatric; Critical Illness; Female; Male; Palliative Care; Quality of Life; Questionnaires; Needs Assessment; Data Collection; Cognition; Health Services Accessibility; Education; Community Health Services; Program Implementation; Child Advocacy; Human; India; Symptoms; Administration; International Agencies; Licensure; Pediatric Care; Only Child; In Infancy and Childhood; Academic Performance; Health and Welfare Planning; Health Facility Administrators; Personnel Health Facility; Psychosocial Functioning; Teamwork
Creator
An entity primarily responsible for making the resource
Muckaden MA; Ghoshal A; Talawadekar P; Marston JM; Paleri AK
Description
An account of the resource
Objectives: To describe the key initiatives that were successful in planning and implementing hospital- and community-based Paediatric Palliative Care (PPC) services designed for a resource-limited setting in Maharashtra, India, in collaboration with DfID. Materials and Methods: The CPC project was a 5-year service development project (April 2010--March 2015) conducted in Maharashtra, India, developed in collaboration with the Department for International Development (DFID), Hospice UK, International Children's Palliative Care Network (ICPCN), Indian Association of Palliative Care (IAPC) and Tata Memorial Centre, to advocate and care for the needs of children and families with life-limiting illnesses in a non-cancer setting. It was implemented through raising awareness and sensitising hospital administrators and staff about PPC, providing education and training on PPC, team building, and data collection to understand the need for PPC. Results: The total number of children enrolled in the CPC project was 866, 525 (60.6%) were male with a mean age of 9.3 years. Major symptom across sites was mild pain, and serial Quality of Life measurement (through PedsQL questionnaire) showed improvement in social, psychological and school performance. Advocacy with the Ministry of Health helped in procurement of NDPS licenses in district hospitals, and led to access to palliative care for children at policy level. Conclusion: The model of PPC service development can be replicated in other resource-limited settings to include children with life-limiting conditions. The development of pilot programmes can generate interest among local physicians to become trained in PPC and can be used to advocate for the palliative care needs of children.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.25259/IJPC_20_2021" target="_blank" rel="noreferrer noopener">10.25259/IJPC_20_2021</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
2023 SE5 - Low Resource Setting
Academic Performance
Administration
Child
Child Advocacy
Cognition
Collaboration
Community Health Services
Critical Illness
Data Collection
Education
Female
Ghoshal A
Health and Welfare Planning
Health Facility Administrators
Health Services Accessibility
Hospitals Pediatric
Human
In Infancy and Childhood
India
Indian Journal Of Palliative Care
International Agencies
Licensure
Male
Marston JM
Muckaden MA
Needs Assessment
Only Child
Pain
Paleri AK
Palliative Care
Pediatric Care
Personnel Health Facility
Program Implementation
Psychosocial Functioning
Quality Of Life
Questionnaires
Symptoms
Talawadekar P
Teamwork
-
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/10.1017/S1478951523000287" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S1478951523000287</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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Children's understanding of dying and death: A multinational grounded theory study
Publisher
An entity responsible for making the resource available
Palliative and Supportive 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
Child; child; adult; article; controlled study; female; human; male; palliative therapy; sibling; clinical article; interview; Only Child; multicenter study; adolescent; thinking; qualitative research; religion; grounded theory; genetic transcription; Uganda; Haiti; altruism; vocabulary
Creator
An entity primarily responsible for making the resource
McPoland P; Grossoehme DH; Sheehan DC; Stephenson P; Downing J; Deshommes T; Gassant PYH; Friebert S
Description
An account of the resource
OBJECTIVES: The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which children directly involved with life-limiting conditions understand dying and death. <br/>METHOD(S): This qualitative study obtained interview data from N = 44 5-18-year-old children in the USA, Haiti, and Uganda who were pediatric palliative care patients or siblings of patients. Of these, 32 were children with a serious condition and 12 were siblings of a child with a serious condition. Interviews were recorded, transcribed, verified, and analyzed using grounded theory methodology. <br/>RESULT(S): Loss of normalcy and of relationships emerged as central themes described by both ill children and siblings. Resilience, altruism, and spirituality had a bidirectional relationship with loss, being strategies to manage both losses and anticipated death, but also being affected by losses. Resiliency and spirituality, but not altruism, had a bidirectional relationship with anticipating death. Themes were consistent across the 3 samples, although the beliefs and behaviors expressing them varied by country. SIGNIFICANCE OF RESULTS: This study partially fills an identified gap in research knowledge about ways in which children in 3 nations understand dying and death. While children often lack an adult vocabulary to express thoughts about dying and death, results show that they are thinking about these topics. A proactive approach to address issues is warranted, and the data identify themes of concern to children.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/S1478951523000287" target="_blank" rel="noreferrer noopener">10.1017/S1478951523000287</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
Adolescent
Adult
Altruism
Article
Child
Clinical Article
Controlled Study
Deshommes T
Downing J
Female
Friebert S
Gassant PYH
genetic transcription
Grossoehme DH
Grounded Theory
Haiti
Human
Interview
Male
McPoland P
Multicenter Study
Only Child
Palliative And Supportive Care
Palliative Therapy
Qualitative Research
Religion
Sheehan DC
Sibling
Stephenson P
thinking
uganda
vocabulary
-
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/10.1007/s00467-022-05525-1" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00467-022-05525-1</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Clinical and genetic characteristics of Tunisian children with infantile nephropathic cystinosis
Publisher
An entity responsible for making the resource available
Pediatric Nephrology
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; child; article; controlled study; female; human; male; retrospective study; palliative therapy; preschool child; clinical article; information processing; Only Child; gene mutation; gene; infant; pediatric patient; clinical feature; Fanconi renotubular syndrome; gene deletion; heterozygosity; homozygosity; molecular fingerprinting; prenatal diagnosis; cystinosis/di [Diagnosis]; cystinosis/dt [Drug Therapy]; genetic trait; infantile nephropathic cystinosis/di [Diagnosis]; infantile nephropathic cystinosis/dt [Drug Therapy]; kidney disease/di [Diagnosis]; kidney disease/dt [Drug Therapy]; Tunisian; bicarbonate/dt [Drug Therapy]; bicarbonate/pv [Special Situation for Pharmacovigilance]; calcitriol/dt [Drug Therapy]; calcitriol/pv [Special Situation for Pharmacovigilance]; citrate potassium/dt [Drug Therapy]; citrate potassium/pv [Special Situation for Pharmacovigilance]; CTNS gene; cystine/ec [Endogenous Compound]; exon; founder mutation; genetic analysis; hypothyroidism/dt [Drug Therapy]; mercaptamine/dt [Drug Therapy]; mercaptamine/pv [Special Situation for Pharmacovigilance]; molecular diagnosis; RNA splicing; Sanger sequencing; thyroid hormone/dt [Drug Therapy]; thyroid hormone/pv [Special Situation for Pharmacovigilance]
Creator
An entity primarily responsible for making the resource
El Younsi M; Trabelsi M; Ben Youssef S; Ouertani I; Hammi Y; Achour A; Maazoul F; Kharrat M; Gargah T; M'Rad R
Description
An account of the resource
Background: Nephropathic cystinosis is an autosomal recessive disease caused by a mutation in the CTNS gene which encodes cystinosin, a lysosomal cystine transporter. The spectrum of mutations in the CTNS gene is not well defined in the North African population. Here, we investigated twelve patients with nephropathic cystinosis belonging to eight Tunisian families in order to analyze the clinical and genetic characteristics of Tunisian children with infantile nephropathic cystinosis. Methods: Clinical data were collected retrospectively. Molecular analysis of the CTNS gene was performed by Sanger sequencing. Results: We describe a new splicing mutation c.971-1G > C in the homozygous state in 6/12 patients which seems to be a founder mutation. The reported deletion of 23nt c.771_793 Del (p.Gly258Serfs*30) was detected in a homozygous state in one patient and in a heterozygous compound state with the c.971-1G > C mutation in 3/12 patients. Two of 12 patients have a deletion of exons 4 and 5 of the CTNS gene. None of our patients had the most common 57-kb deletion. Conclusions: The mutational spectrum in the Tunisian population is different from previously described populations. Thus, a molecular diagnostic strategy must be implemented in Tunisia, by targeting as a priority the common mutations described in this country. Such a strategy will allow a cost-effective diagnosis confirmation as well as early administration of treatment with oral cysteamine. A higher resolution version of the Graphical abstract is available as Supplementary information.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00467-022-05525-1" target="_blank" rel="noreferrer noopener">10.1007/s00467-022-05525-1</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
Achour A
Article
Ben Youssef S
bicarbonate/dt [Drug Therapy]
bicarbonate/pv [Special Situation for Pharmacovigilance]
calcitriol/dt [Drug Therapy]
calcitriol/pv [Special Situation for Pharmacovigilance]
Child
citrate potassium/dt [Drug Therapy]
citrate potassium/pv [Special Situation for Pharmacovigilance]
Clinical Article
Clinical Feature
Controlled Study
CTNS gene
cystine/ec [Endogenous Compound]
cystinosis/di [Diagnosis]
cystinosis/dt [Drug Therapy]
El Younsi M
exon
Fanconi renotubular syndrome
Female
founder mutation
Gargah T
gene
Gene Deletion
gene mutation
genetic analysis
genetic trait
Hammi Y
heterozygosity
homozygosity
Human
hypothyroidism/dt [Drug Therapy]
Infant
infantile nephropathic cystinosis/di [Diagnosis]
infantile nephropathic cystinosis/dt [Drug Therapy]
Information Processing
Kharrat M
kidney disease/di [Diagnosis]
kidney disease/dt [Drug Therapy]
M'Rad R
Maazoul F
Male
mercaptamine/dt [Drug Therapy]
mercaptamine/pv [Special Situation for Pharmacovigilance]
molecular diagnosis
molecular fingerprinting
Only Child
Ouertani I
Palliative Therapy
Pediatric Nephrology
pediatric patient
Prenatal Diagnosis
Preschool Child
Retrospective Study
RNA splicing
Sanger sequencing
thyroid hormone/dt [Drug Therapy]
thyroid hormone/pv [Special Situation for Pharmacovigilance]
Trabelsi M
Tunisian
-
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>
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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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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
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3390/children8040275" target="_blank" rel="noreferrer noopener">10.3390/children8040275</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
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/10.1080/24694193.2022.2085821" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/24694193.2022.2085821</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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The Cry to Be Involved: Experiences of Caregivers on Participation in Decision Making and Care Provision at Mercy James PICU in Blantyre, Malawi
Publisher
An entity responsible for making the resource available
Comprehensive Child and Adolescent Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Child; Female; Male; Decision Making; Intensive Care Units Pediatric; Qualitative Research; Hospitalization; Crying; Malawi; Caregivers
Creator
An entity primarily responsible for making the resource
Chasweka G; Majamanda MD; Namathanga A
Description
An account of the resource
A child's illness and admission in a hospital are stressful and can negatively affect the child and his/her caregivers. The stress is further exacerbated when a child is critically ill and has been admitted to an intensive care unit (ICU). The effects can be reduced when caregivers of the sick children are present and involved in decision making and actual care of their hospitalized children, a care model called family-centered care. Malawi has adopted family-centered care model in the newly instituted Mercy James Pediatric ICU. Little is known about experiences of caregivers with FCC in Malawi. This qualitative study was therefore conducted to explore experiences of caregivers on their involvement in decision making and care at Mercy James Pediatric ICU in Blantyre, Malawi. This was a descriptive qualitative study with a sample size of fifteen participants, however, data saturation was reached with ten participants. One on one in-depth interviews were conducted among a purposively selected sample of ten caregivers whose children had been discharged from the PICU. Content analysis was deductively and manually undertaken to analyze data with the aid of delve software to organize the data. Findings show that not every caregiver was involved in the decision making of their children's care, and if they did, it was not adequate. Barriers to effective involvement such as using a foreign language had a negative impact on comprehensive involvement of caregivers in decision making for their children's care. All participants were, however, involved in the physical care of their children. It is important that health care workers should continuously encourage caregivers to get involved in the decision making and care of their children.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/24694193.2022.2085821" target="_blank" rel="noreferrer noopener">10.1080/24694193.2022.2085821</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2023 SE5 - Low Resource Setting
Caregivers
Chasweka G
Child
Comprehensive Child and Adolescent Nursing
Crying
Decision Making
Female
Hospitalization
Humans
Intensive Care Units Pediatric
Majamanda MD
Malawi
Male
Namathanga A
Qualitative Research
-
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/10.1186/s12904-023-01195-4" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01195-4</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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Impact of an outpatient palliative care consultation and symptom clusters in terminal patients at a tertiary care center in Pakistan
Publisher
An entity responsible for making the resource available
BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Female; Male; Palliative Care; Infant; Quality of Life; Syndrome; Tertiary Care Centers; Outpatients; Palliative Care; Referral and Consultation; Neoplasms/th [Therapy]; Symptom Assessment; Neoplasms; Neoplasms/co [Complications]; Neoplasms/ep [Epidemiology]; Pakistan
Creator
An entity primarily responsible for making the resource
Rafaqat W; Syed AR; Ahmed IM; Hashmi S; Jabeen I; Rajwani S; Qamar U; Waqar MA
Description
An account of the resource
Background: Patients with terminal diseases may benefit physically and psychosocially from an outpatient palliative care visit. Palliative care services are limited in Pakistan. An improved understanding of the symptom clusters present in our population is needed. The first outpatient palliative care center in Karachi, Pakistan, was established at our tertiary care institution. The primary aim of this study was to evaluate the impact of a palliative care outpatient consultation on symptom burden in patients with a terminal diagnosis. The secondary aim was to analyze the symptom clusters present in our population. Methods: Patients with a terminal diagnosis referred to our outpatient palliative department between August 2020-August 2022 were enrolled. The Edmonton Symptom Assessment Scale (ESAS) questionnaire was administered at the initial visit and the first follow-up visit at one month. Change in symptom burden was assessed using a Wilcoxon signed ranks test. A principal component analysis with varimax rotation was performed on the symptoms reported at the initial visit to evaluate symptom clusters. The palliative performance scale (PPS) was used to measure the performance status of palliative care patients. Results: Among the 78 patients included in this study, the average age was 59 ± 16.6 years, 52.6% were males, 99% patients had an oncological diagnosis, and the median duration between two visits was 14 (Q1-Q3: (7.0, 21.0) days. The median PPS level was 60% (Q1-Q3: 50-70). Overall, ESAS scores decreased between the two visits (6.0 (2.8, 11.0), p < 0.001) with statistically significant improvement in pain (5.0 vs. 2.5, p < 0.001), loss of appetite (5.0 vs. 4.0, p = 0.004), depression (2.0 vs. 0.0, p < 0.001), and anxiety (1.5 vs. 0.0, p = 0.032). Based on symptoms at the initial visit, 3 clusters were present in our population. Cluster 1 included anxiety, depression, and wellbeing; cluster 2 included nausea, loss of appetite, tiredness, and shortness of breath; and cluster 3 included drowsiness. Conclusion: An outpatient palliative care visit significantly improved symptom burden in patients with a terminal diagnosis. Patients may benefit from further development of outpatient palliative care facilities to improve the quality of life in terminally ill patients.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-023-01195-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01195-4</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).
2023
2023 SE5 - Low Resource Setting
Ahmed IM
BMC Palliative Care
Female
Hashmi S
Humans
Infant
Jabeen I
Male
Neoplasms
Neoplasms/co [complications]
Neoplasms/ep [Epidemiology]
Neoplasms/th [therapy]
Outpatients
Pakistan
Palliative Care
Qamar U
Quality Of Life
Rafaqat W
Rajwani S
Referral And Consultation
Syed AR
Symptom Assessment
Syndrome
Tertiary Care Centers
Waqar MA
-
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/10.1186/s12904-023-01177-6" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01177-6</a>
Dublin Core
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Title
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Children with palliative care needs in Papua New Guinea, and perspectives from their parents and health care workers: a qualitative study
Publisher
An entity responsible for making the resource available
BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Child; child; Palliative Care; adult; article; controlled study; female; human; male; preschool child; palliative therapy; clinical article; interview; parent; Only Child; school child; health care personnel; qualitative research; descriptive research; child health care; health care quality; pediatric ward; adolescent; infant; thematic analysis; medical record; knowledge gap; health care need; Papua New Guinea; acute lymphoblastic leukemia/di [Diagnosis]; bronchiectasis/di [Diagnosis]; cerebral palsy/di [Diagnosis]; congenital heart disease/di [Diagnosis]; congenital malformation/di [Diagnosis]; dyspnea/co [Complication]; germ cell tumor/di [Diagnosis]; Guillain Barre syndrome/di [Diagnosis]; hemosiderosis/di [Diagnosis]; Human immunodeficiency virus infection/di [Diagnosis]; job experience; malignant neoplasm/di [Diagnosis]; Melanesia; neuroblastoma/di [Diagnosis]; Pacific islands; pain/co [Complication]; pulmonary hypertension/di [Diagnosis]; retinoblastoma/di [Diagnosis]; thalassemia/di [Diagnosis]; tuberculosis/di [Diagnosis]
Creator
An entity primarily responsible for making the resource
Watch V; Anga G; Kilalang C; Pulsan F; Vince JD; Duke T
Description
An account of the resource
Introduction: The World Health Organisation defines paediatric palliative care (PPC) as caring for the child's body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be provided even when curative attempts are being utilised. In Papua New Guinea, as in other low- and middle-income countries there is a lack of services and training on PPC. This study aims to describe the characteristics of children with palliative care needs and to assess the perspectives of their parents and health care workers. Methods: A descriptive qualitative study was carried out over 5 months in 2022 at the Port Moresby General Hospital children's wards. Clinical information was gathered from the admission charts of children with life threatening and life limiting conditions and a recorded interview was carried out with the children's parents. A focus group interview with 10 experienced nurses caring for these children was video recorded. The recorded interviews were subjected to thematic analysis. Results: Twenty children and their parents were included in this study. Nine had a cancer diagnosis and 11 had a chronic progressive condition. The common clinical characteristics of children with palliative care needs were pain (n = 9) and shortness of breath (n = 9), and most children had more than one symptom. Several themes were identified in the parent interviews. Most parents could not name their child's diagnosis, but they were able to correctly describe their child's condition using their own terms. Most parents felt involved in their child's management and were satisfied with the care provided. Parents were psychologically affected by their child's situation but were hopeful that God and the medicines would heal their child. Ten nurses were involved in a focus-group interview. Most nurses' understanding of palliative care was from experience not from formal training, but most felt confident in identifying the physical, emotional, and spiritual needs of the children. Understanding of analgesia was limited, as was the availability of appropriate medications included in the WHO Analgesic Ladder. Conclusion: There is a need for a systematic approach to palliative care in Papua New Guinea. Palliative care can be integrated into an overall approach to quality of paediatric care. It is relevant to a broad section of children with severe chronic or malignant conditions and can be carried out with limited resources. It does require some resources, further training and education, and increased provision of basic drugs for symptom control.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-023-01177-6" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01177-6</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
acute lymphoblastic leukemia/di [Diagnosis]
Adolescent
Adult
Anga G
Article
BMC Palliative Care
bronchiectasis/di [Diagnosis]
Cerebral Palsy/di [Diagnosis]
Child
Child Health Care
Clinical Article
congenital heart disease/di [Diagnosis]
congenital malformation/di [Diagnosis]
Controlled Study
Descriptive Research
Duke T
dyspnea/co [Complication]
Female
germ cell tumor/di [Diagnosis]
Guillain Barre syndrome/di [Diagnosis]
health care need
Health Care Personnel
Health Care Quality
hemosiderosis/di [Diagnosis]
Human
Human immunodeficiency virus infection/di [Diagnosis]
Infant
Interview
job experience
Kilalang C
knowledge gap
Male
malignant neoplasm/di [Diagnosis]
Medical Record
Melanesia
neuroblastoma/di [Diagnosis]
Only Child
Pacific Islands
Pain/co [complication]
Palliative Care
Palliative Therapy
Papua New Guinea
Parent
pediatric ward
Preschool Child
pulmonary hypertension/di [Diagnosis]
Pulsan F
Qualitative Research
retinoblastoma/di [Diagnosis]
School Child
thalassemia/di [Diagnosis]
Thematic Analysis
tuberculosis/di [Diagnosis]
Vince JD
Watch V
-
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/10.1177/10499091231180819" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/10499091231180819</a>
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"It Seems Like a Bad Thing": US South Asian Youths' Perspectives About the Use of Hospice 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
Adolescent; Hospice Care; article; controlled study; female; human; quality of life; palliative therapy; Hospices; education; clinical article; adolescent; thematic analysis; qualitative research; hospice care; consensus; place of death; juvenile; inheritance; Indian; South Asian; vulnerable population; university student
Creator
An entity primarily responsible for making the resource
Khosla N
Description
An account of the resource
BACKGROUND: South Asians are one of the fastest growing populations in the US. Family based decision making is common among this population. Little is known about their knowledge and attitudes towards hospice use. <br/>OBJECTIVE(S): This study explored US South Asian youths' knowledge of, and attitudes towards hospice care. DESIGN: Qualitative study, using focus group discussions. <br/>METHOD(S): Thirty-six university students of South Asian heritage participated in ten focus group discussions. Data were coded inductively and deductively. Thematic analysis was performed. Disagreements were resolved through discussion. <br/>RESULT(S): Participants were in consensus that if patients had an incurable, fatal condition, keeping them comfortable was important. Several participants were unaware of the terms 'hospice' and 'palliative care'. After these terms were explained, most opposed hospice care for reasons of 'desire for a normal life', 'cultural incompatibility', 'concerns about the hospice environment' and 'preference for home as the place of death'. Some were opposed to even home hospice fearing that it would continuously remind the family and patient about impending death. Concerns were also expressed about having a 'stranger' in the home to provide hospice care. One participant said she would support hospice use if it aligned with the patient's values. Others cited financial reasons and quality of life as considerations in choosing hospice care. <br/>CONCLUSION(S): Research is needed on culturally-appropriate modes of palliative care education and advocacy for South Asian populations in the US, especially youth, that are often the decision makers for the care of older family members.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/10499091231180819" target="_blank" rel="noreferrer noopener">10.1177/10499091231180819</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
Adolescent
American Journal Of Hospice And Palliative Care
Article
Clinical Article
Consensus
Controlled Study
Education
Female
Hospice Care
Hospices
Human
Indian
inheritance
juvenile
Khosla N
Palliative Therapy
Place Of Death
Qualitative Research
Quality Of Life
South Asian
Thematic Analysis
university student
vulnerable population
-
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/10.1136/archdischild-2023-rcpch.53" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.53</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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An innovative hybrid palliative care fellowship program: empowering pediatricians and enhancing care for children in resource-limited settings
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Canada; Palliative Care; pediatrics; Bangladesh; controlled study; female; human; major clinical study; male; child health; palliative therapy; total quality management; India; pediatrician; skill; clinical examination; conference abstract; Philippines; learning; rotation; leadership; teaching; rigor; career; mentor; running; resource limited setting; Southeast Asia
Creator
An entity primarily responsible for making the resource
Palat G; Doherty M; Brown S; Shah A
Description
An account of the resource
Objective To describe the development and implementation of a 1-year 'Hybrid' Pediatric Palliative Care (PPC) Fellowship, which includes both clinical and online learning to train paediatricians as specialists and leaders in paediatric palliative care in South and Southeast Asia. Methods Globally, 97% of children needing palliative care (PC) live in low- or middle-income countries, where access is often very limited. In India, less than 1% of the 1.6 million children needing PC can access these services. Building capacity and training opportunities for paediatricians are essential to improve access to PC in these settings. The Hybrid fellowship was developed through the existing partnership between Two Worlds Cancer Collaboration, Canada and the Hyderabad Centre for Palliative Care to train paediatricians as specialists and leaders in paediatric palliative care in South and Southeast Asia. A team of PPC experts developed the fellowship after a rigorous review of relevant literature and educational materials, incorporating their experiences running PPC traditional (in-person) fellowship programs in both high and lowerresourced settings. Results The fellowship includes formal teaching, clinical rotations, mentorship, regular assessments of trainees, and a scholarly project. Teaching includes 100 hours of weekly online classes, with a focus on case-based learning and leadership skills. Mandatory 4 months of clinical rotations in PC includes 2 months in the regional centre of PPC excellence in Hyderabad, India. Trainees' progression towards program competencies is assessed through written and observed standardised clinical examinations. A mentorship program provides additional support, which continues beyond the fellowship through an early career mentorship group. As a part of research and quality improvement (QI) training, fellows complete a scholarly project with support and supervision from experienced research mentors. More than 30 regional and international PPC experts contribute to the program as faculty. Since 2021, 6 paediatricians have completed the 'Hybrid' fellowship, from India (2), Bangladesh (1), and the Philippines (3), with 3 fellows currently in training. Graduated fellows have become regional and national leaders in PPC, developing new PPC programs, and implementing new PPC training in their home country. The program successfully sought endorsement from the Royal College of Paediatrics and Child Health (UK), which has strengthened the program's rigor and quality. Conclusion A 1-year Hybrid PPC Fellowship, which trains pediatricians to become specialists and champions of PPC, is an innovative model that can successfully build PPC capacity in resource-limited settings and increase access to PPC for children with life-limiting illnesses.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.53" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.53</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
2023 SE5 - Low Resource Setting
Archives of Disease in Childhood
Bangladesh
Brown S
Canada
career
Child
Child Health
clinical examination
conference abstract
Controlled Study
Doherty M
Female
Human
India
Leadership
Learning
Major Clinical Study
Male
mentor
Palat G
Palliative Care
Palliative Therapy
Pediatrician
Pediatrics
Philippines
resource limited setting
rigor
Rotation
running
Shah A
Skill
Southeast Asia
Teaching
Total Quality Management
-
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/.
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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/10.1111/jocn.15368" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jocn.15368</a>
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Title
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The views and experiences of fathers regarding their young child's intellectual and developmental disability diagnosis: Findings from a qualitative study.
Publisher
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Journal of Clinical Nursing
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; Child, Preschool; Female; Male; Middle Aged; Adult; Qualitative Research; Attitude of Health Personnel; Developmental Disabilities/di [Diagnosis]; Intellectual Disability/di [Diagnosis]; *Fathers/px [Psychology]; *Intellectual Disability/px [Psychology]; *Developmental Disabilities/px [Psychology]
Creator
An entity primarily responsible for making the resource
Marsh, Lynne; Brown, Michael; McCann, Edward
Description
An account of the resource
AIMS AND OBJECTIVES: To report the views and experiences of fathers following their child's diagnosis of an intellectual and developmental disability (IDD)., BACKGROUND: There is a growing interest in understanding the experiences of fathers of children with IDD given the transformation of the structural change of fathers' roles within the family and wider society., DESIGN: A qualitative design was used to elicit the view and experiences of fathers., METHODS: A total of ten Irish fathers participated in face-to-face interviews. The data were thematically analysed. The COREQ guidelines for reporting qualitative studies were used in the development of this paper., RESULTS: The key themes that emerged were (a) the confirmation of the child's diagnosis (b) the impact of the diagnosis and (c) father's motivation to participate in disability research., CONCLUSIONS: This study informs and develops a further understanding of the international evidence base of fathers receiving a confirmation of a child's diagnosis of an intellectual and developmental disability, the impact of the diagnosis on fathers and their motivation to share their stories to add to the disability research. Health and social care practitioners have important contributions to make in meeting the needs of fathers. There are specific areas to consider in terms of practice, education and research that require further attention and development to ensure fathers' distinct needs regarding their child's diagnosis of IDD are known and responded to effectively., RELEVANCE TO CLINICAL PRACTICE: This study highlights that when the child's disability is confirmed, fathers experience a diverse range of mixed emotions. Health and social care practitioners including nurses need to be aware of the impact of the diagnosis upon fathers. There is scope to develop the knowledge, skills and confidence of health and social care practitioners regarding the experiences of fathers and how they can further support fathers and their families during the critical time of a disability disclosure. Copyright © 2020 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.
Identifier
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<a href="http://doi.org/10.1111/jocn.15368" target="_blank" rel="noreferrer noopener">10.1111/jocn.15368</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).
*Developmental Disabilities/px [Psychology]
*Fathers/px [Psychology]
*Intellectual Disability/px [Psychology]
2020
2023 SE4 - Parent Perspectives
Adult
Attitude Of Health Personnel
Brown, Michael
Child
Child, Preschool
Developmental Disabilities/di [Diagnosis]
Female
Humans
Intellectual Disability/di [Diagnosis]
Journal of Clinical Nursing
Male
Marsh, Lynne
McCann, Edward
Middle Aged
Qualitative Research
-
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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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/10.1177/1359104517730115" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/1359104517730115</a>
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Title
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Fathers' experiences of their child's life-limiting condition: An attachment narrative perspective.
Publisher
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Clinical Child Psychology and Psychiatry
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Humans; Child; Female; Male; Adolescent; Middle Aged; Adult; Qualitative Research; *Object Attachment; *Fathers/px [Psychology]; *Chronic Disease/px [Psychology]; *Father-Child Relations
Creator
An entity primarily responsible for making the resource
Bailey-Pearce, Oliver; Stedmon, Jacqui; Dallos, Rudi; Davis, George
Description
An account of the resource
When a child has a life-limiting illness, parental involvement is amplified, having to respond to the increased needs of the child. Both parents are affected by the illness, yet research has largely under-represented fathers' experiences of their child's illness. Seven fathers were interviewed about their experiences with their child's life-limiting illness. In addition, fathers' attachment strategies were assessed using the Adult Attachment Interview. Narrative analysis was implemented to explore the interviews, and indicators of attachment markers employed in the Adult Attachment Interview were also identified. The dominant themes were found to be 'experience of the diagnosis', 'living with the illness', 'struggling with emotions' and 'relationship with staff'. Within each theme, there were differences which related to the father's attachment strategies. This was particularly evident in parts of their narratives recounting critical moments of threat and anxiety in the course of discovering and adjusting to their child's illness. Importantly, the findings also suggested that the experience for the fathers stressed, and in some cases disrupted, their attachment coping strategies. All fathers told stories of trying to get it right for their children and family. Their experiences of, and adjustment to, the illness were related to their attachment strategies. The clinical implications for health professionals are discussed.
Identifier
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<a href="http://doi.org/10.1177/1359104517730115" target="_blank" rel="noreferrer noopener">10.1177/1359104517730115</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).
*Chronic Disease/px [Psychology]
*Father-Child Relations
*Fathers/px [Psychology]
*Object Attachment
2018
2023 SE4 - Parent Perspectives
Adolescent
Adult
Bailey-Pearce, Oliver
Child
Clinical Child Psychology And Psychiatry
Dallos, Rudi
Davis, George
Female
Humans
Male
Middle Aged
Qualitative Research
Stedmon, Jacqui
-
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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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/10.1111/jir.12093" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jir.12093</a>
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Title
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Openness and avoidance--a longitudinal study of fathers of children with intellectual disability.
Publisher
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Journal of Intellectual Disability Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Humans; Child, Preschool; Female; Male; Infant; Longitudinal Studies; Adult; Qualitative Research; *Fathers/px [Psychology]; *Father-Child Relations; *Intellectual Disability/px [Psychology]; *Parenting/px [Psychology]; *Developmental Disabilities/px [Psychology]
Creator
An entity primarily responsible for making the resource
Bostrom, P K; Broberg, M
Description
An account of the resource
BACKGROUND: Fathers' interactions with children who have intellectual disabilities (ID) or developmental delays (DD) have increased over the past few decades and may be expected to continue to increase as maternal and paternal roles, along with other gender roles, become more equal. The aim of the present study was to explore fathers' experiences of parenthood in relation to a child with ID/DD from the initial discovery of the disability to 5 years later., METHODS: Fathers' experiences of parenting children with ID/DD were explored in a longitudinal framework. Seven Swedish fathers of young children with ID/DD participated in a series of semi-structured interviews from 2005 to 2010, and their accounts were subjected to interpretative phenomenological analysis., RESULTS: The analysis revealed three themes: (1) An interrupted path - no longer taking things for granted, which describes the fathers' reactions to their children's diagnosis; (2) Being a good father, which describes the fathers' overall perceptions of their parenting of a child with ID/DD; and (3) Dealing with the unexpected, which describes fathers' individual ways of integrating, managing, and living with the knowledge of their child's disability over the 5 years during which fathers were interviewed., CONCLUSIONS: Fathers' individual paths need to be taken into consideration when offering psychological support to families of children with ID/DD. Copyright © 2013 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.
Identifier
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<a href="http://doi.org/10.1111/jir.12093" target="_blank" rel="noreferrer noopener">10.1111/jir.12093</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).
*Developmental Disabilities/px [Psychology]
*Father-Child Relations
*Fathers/px [Psychology]
*Intellectual Disability/px [Psychology]
*Parenting/px [Psychology]
2014
2023 SE4 - Parent Perspectives
Adult
Bostrom, P K
Broberg, M
Child, Preschool
Female
Humans
Infant
Journal Of Intellectual Disability Research
Longitudinal Studies
Male
Qualitative Research
-
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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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/10.1177/0269216309354396" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/0269216309354396</a>
Dublin Core
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Title
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Gender imbalance in pediatric palliative care research samples.
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Humans; Child; Child, Preschool; Female; Male; Adolescent; Infant; Sex Factors; Research Design; Sampling Studies; *Palliative Care/sn [Statistics & Numerical Data]; *Fathers/sn [Statistics & Numerical Data]; *Mothers/sn [Statistics & Numerical Data]; *Pediatrics/sn [Statistics & Numerical Data]; *Research/sn [Statistics & Numerical Data]
Creator
An entity primarily responsible for making the resource
Macdonald, Mary Ellen; Chilibeck, Gillian; Affleck, William; Cadell, Susan
Description
An account of the resource
We assessed the sampling performance of research on parental perspectives in pediatric palliative care and examined if and how gender imbalance was treated. We undertook a systematic review of parental perspectives research in pediatric palliative care using MEDLINE, CINAHL, and PsycINFO. Study selection inclusion criteria were: (1) published between 1988 and 2008; (2) in English; (3) conducted in North America; (4) focused on parents of children aged 0-18 years who were expected to die or had died; (5) had 'parent' in the title; and (6) focused on parents' experiences or on parents' perspectives regarding the child's illness/death. Keyword searches produced a list of 2103 studies, of which 45 met the criteria for inclusion. The ratio of mothers to fathers participating in the studies was examined. We found that there has been an increase in research on parental perspectives in pediatric palliative care over the last 5 years, but what constitutes 'parental' in this literature continues to be primarily 'maternal'. Mothers constituted 75% of the overall sample of parents. In only four studies was the gender imbalance addressed as one of the limitations of the study. There is a growing interest in parental perspectives in pediatric palliative care, but the research does not equally reflect the experiences and needs of mothers and fathers. Gender can shape experiences of both parenthood and grief; balanced gender sampling and accurate analysis is essential for research on 'parental perspectives'. Gender imbalance in research samples, designs, recruitment strategies, and data gathering methods must be addressed.
Identifier
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<a href="http://doi.org/10.1177/0269216309354396" target="_blank" rel="noreferrer noopener">10.1177/0269216309354396</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).
*Fathers/sn [Statistics & Numerical Data]
*Mothers/sn [Statistics & Numerical Data]
*Palliative Care/sn [Statistics & Numerical Data]
*Pediatrics/sn [Statistics & Numerical Data]
*Research/sn [Statistics & Numerical Data]
2010
2023 SE4 - Parent Perspectives
Adolescent
Affleck, William
Cadell, Susan
Child
Child, Preschool
Chilibeck, Gillian
Female
Humans
Infant
Macdonald, Mary Ellen
Male
Palliative Medicine
Research Design
Sampling Studies
Sex Factors
-
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/10.1177/13674935030074001" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935030074001</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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Differences and similarities between mothers' and fathers' experiences of parenting a child with a disability.
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Humans; Child; Child, Preschool; Female; Male; Middle Aged; Parent-Child Relations; Communication; Adult; Qualitative Research; Gender Identity; Adaptation, Psychological; Focus Groups; Nursing Methodology Research; *Attitude to Health; *Disabled Children/px [Psychology]; Early Intervention, Educational; *Fathers/px [Psychology]; Stereotyping; Marriage/px [Psychology]; *Mothers/px [Psychology]; *Parenting/px [Psychology]; *Down Syndrome/px [Psychology]; Disabled Children/rh [Rehabilitation]; Down Syndrome/rh [Rehabilitation]
Creator
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Pelchat, Diane; Lefebvre, Helene; Perreault, Michel
Description
An account of the resource
This qualitative study used focus groups to identify the differences and similarities in the experiences of parents of children with a disability. Two main themes emerged, showing the ways in which the mothers and fathers are alike or different. One concerns roles, actual and expected, in the various subsystems of family life. The other concerns the normalization and stigmatization that arise because of the child's problem. Mothers tend to score better in terms of interpersonal and group communications. It would seem that the fathers' expectations are harder to fulfil than the mothers'. The fathers' expectations are attuned to the outer world; the actual day-to-day tasks related to the child's care are not their priority. The mothers are less demanding and their expectations are more self-focused. Interestingly, these families are similar to families of children without a disability; however, the difficulties they experience are accentuated by the presence of a child with a problem.
Identifier
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<a href="http://doi.org/10.1177/13674935030074001" target="_blank" rel="noreferrer noopener">10.1177/13674935030074001</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).
*Attitude to Health
*Disabled Children/px [Psychology]
*Down Syndrome/px [Psychology]
*Fathers/px [Psychology]
*Mothers/px [Psychology]
*Parenting/px [Psychology]
2003
2023 SE4 - Parent Perspectives
Adaptation, Psychological
Adult
Child
Child, Preschool
Communication
Disabled Children/rh [Rehabilitation]
Down Syndrome/rh [Rehabilitation]
Early Intervention, Educational
Female
Focus Groups
Gender Identity
Humans
Journal Of Child Health Care
Lefebvre, Helene
Male
Marriage/px [Psychology]
Middle Aged
Nursing Methodology Research
Parent-child Relations
Pelchat, Diane
Perreault, Michel
Qualitative Research
Stereotyping
-
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/10.1186/s12887-016-0631-9" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12887-016-0631-9</a>
Dublin Core
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Title
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Differences and similarities between mothers and fathers of premature children: a qualitative study of parents' coping experiences in a neonatal intensive care unit.
Publisher
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BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Humans; Infant, Newborn; Female; Male; Middle Aged; Adult; Qualitative Research; *Parent-Child Relations; Social Support; Object Attachment; *Professional-Family Relations; *Adaptation, Psychological; *Intensive Care Units, Neonatal; *Fathers/px [Psychology]; *Mothers/px [Psychology]; Intensive Care, Neonatal/mt [Methods]; *Intensive Care, Neonatal/px [Psychology]; Intensive Care Units, Neonatal/og [Organization & Administration]; Intensive Care, Neonatal/og [Organization & Administration]
Creator
An entity primarily responsible for making the resource
Hagen, I H; Iversen, V C; Svindseth, M F
Description
An account of the resource
BACKGROUND: The aim of this study was to explore and describe the coping experiences of parents to children admitted to a neonatal unit., METHODS: A qualitative research approach was chosen, using in-depth interviews with eight fathers and eight mothers., RESULTS: The main findings were that parents with previous complicated births had more difficulties in coping compared to those parents with no experience with complications. Coping seemed easier where parents' opinions were heard regarding their baby's care and when both parents were present in the neonatal intensive care unit (NICU). The main similarities between mothers and fathers were the reluctance to speak their opinions on childcare, and both experienced a sense of alienation and problems in bonding with the baby. They also needed a limitation on the number of visitors in the NICU. Differences between mothers and fathers were that fathers tried hard to be the strong partner in the relationship, and were more concerned with the mother if she was seriously ill postpartum, while mothers were more concerned for their baby. Mothers' postpartum period was felt as more stressful if the father was not present, but mothers were also better at welcoming support from the health personnel., CONCLUSION: This study highlights the parent's coping experiences in NICUs. Coping seemed easier where parents' opinions were heard. Nurses in the NICU should take the former experiences of the parents into consideration when nursing in the NICU and planning for discharge.
Identifier
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<a href="http://doi.org/10.1186/s12887-016-0631-9" target="_blank" rel="noreferrer noopener">10.1186/s12887-016-0631-9</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).
*Adaptation, Psychological
*Fathers/px [Psychology]
*Intensive Care Units, Neonatal
*Intensive Care, Neonatal/px [Psychology]
*Mothers/px [Psychology]
*Parent-Child Relations
*Professional-Family Relations
2016
2023 SE4 - Parent Perspectives
Adult
Bmc Pediatrics
Female
Hagen, I H
Humans
Infant, Newborn
Intensive Care Units, Neonatal/og [Organization & Administration]
Intensive Care, Neonatal/mt [Methods]
Intensive Care, Neonatal/og [Organization & Administration]
Iversen, V C
Male
Middle Aged
Object Attachment
Qualitative Research
Social Support
Svindseth, M F
-
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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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/10.1111/jar.12804" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jar.12804</a>
Dublin Core
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Title
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"They just get it" an exploration of father's experiences and perceptions of a support group for men caring for children with disabilities and/or developmental delay
Publisher
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Journal of Applied Research in Intellectual Disabilities
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Humans; Child; Female; Male; Qualitative Research; Perception; Fathers; Self-Help Groups; *Intellectual Disability; *Disabled Children
Creator
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Batchelor, Molly; Maguire, Sabine; Shearn, Julia
Description
An account of the resource
BACKGROUND: Support groups available to parents/carers of children with a disability or developmental delay (DDD) are predominately attended by women. Limited data exists reporting experiences of the few male-only support groups. This paper examines experiences of fathers of children with DDD attending a male-only support group from South Wales., METHOD: All fifteen members from a support group for fathers/male carers of children with DDD were invited to take part in qualitative interviews and seven participated. The data were analysed following Braun and Clarke's (Qualitative research in psychology, 2006, 3:77) thematic framework., RESULTS: Within the group, fathers felt understood by similarly situated men, and a sense of connectivity and belonging. Fathers perceived exclusion elsewhere, including mixed-gender groups. Fathers felt permission to talk in a way consistent with their male identities, and valued receiving, and giving, support., CONCLUSIONS: Mixed-gender support groups may not meet the needs of fathers, and there are potential benefits in providing male-only groups. Copyright � 2020 John Wiley & Sons Ltd.
Identifier
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<a href="http://doi.org/10.1111/jar.12804" target="_blank" rel="noreferrer noopener">10.1111/jar.12804</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).
*Disabled Children
*Intellectual Disability
2021
2023 SE4 - Parent Perspectives
Batchelor, Molly
Child
Fathers
Female
Humans
Journal Of Applied Research In Intellectual Disabilities
Maguire, Sabine
Male
Perception
Qualitative Research
Self-Help Groups
Shearn, Julia
-
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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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/10.1136/bmjspcare-2021-003019" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjspcare-2021-003019</a>
Dublin Core
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Title
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Experiences of fathers of children with a life-limiting condition: a systematic review and qualitative synthesis
Publisher
An entity responsible for making the resource available
BMJ Supportive 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
Humans; Child; Female; Male; Qualitative Research; Emotions; *Neoplasms; Parents/px [Psychology]; Mothers/px [Psychology]; *Fathers; Fathers/px [Psychology]
Creator
An entity primarily responsible for making the resource
Fisher, Victoria; Fraser, Lorna; Taylor, Johanna
Description
An account of the resource
BACKGROUND: Children with a life-limiting condition often require extensive and complex care, much of which is provided by their parents at home. There is a growing body of research that aims to understand the experiences of these parents, but the majority of this research is from mothers' perspectives, meaning that fathers' experiences are not well understood., OBJECTIVES: To identify and synthesise findings from existing qualitative studies that have explored the experiences of fathers of children with a life-limiting condition., METHODS: A systematic review of qualitative research was conducted using thematic synthesis. Searches were conducted in MEDLINE, CINAHL, EMBASE, PsycINFO and Social Science Citation Index., RESULTS: Findings from 30 studies were included, representing the experiences of 576 fathers of children with a range of diagnoses including cancer, cystic fibrosis, genetic and neurological conditions. Themes detailed fathers' experiences of uncertainty and shock around the time of their child's diagnosis, their accounts of a 'new normal', difficulties in discussing their emotions, forming relationships with and seeking support from professionals and working fathers' role conflicts. They discussed the life-changing nature of their child's diagnosis, an event that affected all aspects of their lives from everyday activities, to their relationships, spirituality, values and ambitions., CONCLUSIONS: Fathers experience many difficulties in response to their child's diagnosis and ongoing treatment. Findings highlight the need for healthcare professionals to recognise individual family dynamics and the evolving role of the father. Fathers' responses are not widely understood, and research that directly addresses their own well-being is warranted. Copyright � Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2021-003019" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-003019</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).
*Fathers
*Neoplasms
2023
2023 SE4 - Parent Perspectives
BMJ Supportive and Palliative Care
Child
Emotions
Fathers/px [Psychology]
Female
Fisher, Victoria
Fraser, Lorna
Humans
Male
Mothers/px [Psychology]
Parents/px [psychology]
Qualitative Research
Taylor, Johanna
-
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/10.1177/02692163221135350" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163221135350</a>
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Title
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Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families' and professionals' experiences
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Collaboration; Child; Female; Male; Palliative Care; Denmark; Adolescence; Content Analysis; Qualitative Studies; Home Health Care; Data Analysis Software; Descriptive Research; Human; Descriptive Statistics; Pediatric Care; Semi-Structured Interview; In Infancy and Childhood; Cancer Patients; Case Studies; Oncologic Care
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Hammer NM; Hansson H; Pedersen LH; Abitz M; Sjøgren P; Schmiegelow K; Bidstrup PE; Larsen HB; Olsen M
Description
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Background: Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaboration between the family and professionals across health care sectors. Aim: To identify and explore key elements of home-based end-of-life care collaboration for children with cancer, as experienced by their parents and grandparents and the hospital- and community-based professionals involved. Design: Descriptive qualitative multiple-case study. Data were collected by semi-structured interviews and written responses to open-ended questions, and analyzed inductively across cases using qualitative content analysis. Setting/participants: Cases comprised a criterion sample of five children (aged <18 years), who died of cancer at home. Cases were represented by the children's bereaved parents (n = 8) and grandparents (n = 7), and community-based professionals (n = 16). Also, hospital-based professionals (n = 10) were interviewed about the children's end-of-life care through group interviews. Results: We identified five main themes, describing key elements of the end-of-life collaboration: Establishing the collaboration, Bolstering family life, Elucidating organization and integration, Managing challenges, and Closing the collaboration. These themes all came under the overarching theme: A mutual trust-based collaboration. On this basis, we developed the "Home-Based Pediatric End-of-Life Care Model for Children with Cancer." Conclusions: By highlighting key elements in the family-centered, intersectoral and interprofessional end-of-life care collaboration, our "Home-Based Pediatric End-of-Life Care Model for Children with Cancer" offers a framework for further optimization of home-based end-of-life care services for children with cancer and their families.
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<a href="http://doi.org/10.1177/02692163221135350" target="_blank" rel="noreferrer noopener">10.1177/02692163221135350</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
Abitz M
Adolescence
Bidstrup PE
cancer patients
Case Studies
Child
Collaboration
Content Analysis
Data Analysis Software
Denmark
Descriptive Research
Descriptive Statistics
Female
Hammer NM
Hansson H
Home Health Care
Human
In Infancy and Childhood
Larsen HB
Male
Olsen M
Oncologic Care
Palliative Care
Palliative Medicine
Pedersen LH
Pediatric Care
Qualitative Studies
Schmiegelow K
Semi-Structured Interview
Sjøgren P
-
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Title
A name given to the resource
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/10.1017/S1478951522001018" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S1478951522001018</a>
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Title
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Factors associated with mental health service use among families bereaved by pediatric cancer
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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
2022
Subject
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child; Bereavement; article; controlled study; female; human; major clinical study; male; palliative therapy; education; sibling; Mental Health Services; bereavement; cooperation; distress syndrome; randomized controlled trial; health care personnel; self report; multicenter study; race; mother; home visit; malignant neoplasm; demography; father; support group; self help; educational status; mental health service; Child Behavior Checklist
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Hill KN; Olsavsky A; Barrera M; Gilmer MJ; Fairclough DL; Akard TF; Compas BE; Vannatta K; Gerhardt CA
Description
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OBJECTIVES: We identified types of interventions used by bereaved family members and examined associations with demographic and medical factors. Furthermore, we examined associations between distress and intervention use among bereaved families. METHOD(S): Bereaved families (n = 85) were recruited from three children's hospitals 3-12 months after their child died of cancer. One eligible sibling (ages 8-17) per family was randomly selected for participation. During home visits 1-year post-death, parents reported on their own and the sibling's intervention use, helpfulness, and dose (self-help books, support groups, therapy, medication), and distress, defined as internalizing, externalizing, and total problems (Adult Self Report, Child Behavior Checklist). RESULT(S): Fifty percent of mothers used medications (n = 43); utilization was low among fathers (17%, n = 9) and siblings (5%, n = 4). Individuals with more total problems were more likely to use medications (mothers: rpb = 0.27; p = 0.02; fathers: rpb = 0.32; p = 0.02; siblings: rpb = 0.26; p = 0.02). Mothers and siblings with more total problems used more services (r = 0.24; p = 0.03 and r = 0.29; p = 0.01, respectively). Among mothers, the overall regression was significant, R2 = 0.11, F(2, 80) = 4.954, p = 0.01; the deceased child's age at death was significantly associated with total services used (b = 0.052, p = 0.022). Among fathers, the overall regression was significant, R2 = 0.216, F(3, 49) = 4.492, p = 0.007; race and years of education were significantly associated with total services used (b = 0.750, p = 0.030 and b = 0.154, p = 0.010). Among siblings, the overall regression was significant R2 = 0.088, F(2, 80) = 3.867, p = 0.025; greater total problems were significantly associated with total services used (b = 0.012, p = 0.007). SIGNIFICANCE OF RESULTS: Although few background factors were related to intervention use, bereaved mothers and siblings may seek services if they have more distress. Healthcare providers should be aware of the types of services that are most often utilized and helpful to bereaved families to connect them with appropriate resources. Future research should investigate other predictors of intervention use and outcomes after the death of a child.
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<a href="http://doi.org/10.1017/S1478951522001018" target="_blank" rel="noreferrer noopener">10.1017/S1478951522001018</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
Akard TF
Article
Barrera M
Bereavement
Child
Child Behavior Checklist
Compas BE
Controlled Study
Cooperation
Demography
Distress Syndrome
Education
Educational Status
Fairclough DL
Father
Female
Gerhardt CA
Gilmer MJ
Health Care Personnel
Hill KN
Home Visit
Human
Major Clinical Study
Male
Malignant Neoplasm
mental health service
Mental Health Services
Mother
Multicenter Study
Olsavsky A
Palliative And Supportive Care
Palliative Therapy
race
Randomized Controlled Trial
self help
Self Report
Sibling
support group
Vannatta K
-
Dublin Core
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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/10.3389/fonc.2023.1118992" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fonc.2023.1118992</a>
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Title
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Communication and information sharing with pediatric patients including refugees with advanced cancer, their caregivers, and health care professionals in Jordan: a qualitative study
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Frontiers in Oncology
Date
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2023
Subject
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child; adult; article; female; human; male; palliative therapy; Information Dissemination; caregiver; health care personnel; human experiment; health care policy; cross-sectional study; adolescent; Jordan; qualitative research; attitude to health; semi structured interview; pediatric patient; Jordanian; implicit bias; advanced cancer/dm [Disease Management]; doctor patient relationship; medical information; refugee; health care practice; myelodysplastic syndrome; myeloproliferative disorder; reticuloendothelial tumor
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Alarjeh G; Boufkhed S; Alrjoub W; Guo P; Yurdusen S; Ahmed F; Abdal-Rahman M; Alajarmeh S; Alnassan A; Al-Awady S; Kutluk T; Harding R; Shamieh O
Description
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Introduction: Effective communication in pediatric palliative cancer care is an important aspect of practice to enhance patient- and family-centered care, and to optimize decision-making. However, little is known about communication preferences practices from the perspectives of children, caregivers and their health care professionals (HCPs) in the Middle Eastern region. Furthermore, involving children in research is crucial but limited. This study aimed to describe the communication and information-sharing preferences and practices of children with advanced cancer, their caregivers, and health care professionals in Jordan. Method(s): A qualitative cross-sectional study was conducted using semi-structured face to face interviews with three groups of stakeholders (children, caregivers and HCPs). Purposive sampling recruited a diverse sample from inpatient and outpatient settings at a tertiary cancer center in Jordan. Procedures were in line with the Consolidated criteria for reporting qualitative research (COREQ) reporting guidelines. Verbatim transcripts were thematically analyzed. Finding(s): Fifty-two stakeholders participated: 43 Jordanian and 9 refugees (25 children, 15 caregivers and 12 HCPs). Four major themes emerged: 1) Hiding information between the three stakeholders which includes parents who hide the information from their sick children and ask the HCPs to do so to protect the child from distressful emotions and children who hide their suffering from their parents to protect them from being sad; 2) Communication and sharing of clinical versus non-clinical information; 3) Preferred communication styles such as use of a companionate approach by acknowledging patients and caregivers' suffering, building a trustful relationship, proactive information sharing, considering child age and medical status, parents as facilitators in communication, and patients' and caregivers' health literacy; 4) Communication and information sharing with refugees where they had dialect issues, which hindered effective communication. Some refugees had unrealistically high expectations regarding their child's care and prognosis, which posed challenges to communication with staff. Discussion(s): The novel findings of this study should inform better child-centered practices and better engage them in their care decisions. This study has demonstrated children's ability to engage in primary research and to express preferences, and parents' ability to share views on this sensitive topic.Copyright © 2023 Alarjeh, Boufkhed, Alrjoub, Guo, Yurdusen, Ahmed, Abdal-Rahman, Alajarmeh, Alnassan, Al-Awady, Kutluk, Harding and Shamieh.
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<a href="http://doi.org/10.3389/fonc.2023.1118992" target="_blank" rel="noreferrer noopener">10.3389/fonc.2023.1118992</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
Abdal-Rahman M
Adolescent
Adult
advanced cancer/dm [Disease Management]
Ahmed F
Al-Awady S
Alajarmeh S
Alarjeh G
Alnassan A
Alrjoub W
Article
Attitude To Health
Boufkhed S
Caregiver
Child
Cross-sectional Study
doctor patient relationship
Female
Frontiers in Oncology
Guo P
Harding R
Health Care Personnel
Health Care Policy
health care practice
Human
Human Experiment
implicit bias
Information Dissemination
Jordan
Jordanian
Kutluk T
Male
Medical Information
myelodysplastic syndrome
myeloproliferative disorder
Palliative Therapy
pediatric patient
Qualitative Research
refugee
reticuloendothelial tumor
Semi Structured Interview
Shamieh O
Yurdusen S
-
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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/10.1001/jamanetworkopen.2023.13503" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamanetworkopen.2023.13503</a>
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Parent Priorities in End-of-Life Care for Children With Cancer
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JAMA Network Open
Date
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2023
Subject
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child; Terminal Care; terminal care; female; human; death; child parent relation; psychology; cross-sectional study; middle aged; neoplasm/th [Therapy]; Bayes theorem
Creator
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Ananth P; Lindsay M; Mun S; McCollum S; Shabanova V; de Oliveira S; Pitafi S; Kirch R; Ma X; Gross CP; Boyden JY; Feudtner C; Wolfe J
Description
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Importance: Robust quality measures to benchmark end-of-life care for children with cancer do not currently exist; 28 candidate patient-centered quality measures were previously developed. Objective(s): To prioritize quality measures among parents who lost a child to cancer. Design, Setting, and Participant(s): This survey study was conducted using an electronic, cross-sectional discrete choice experiment (DCE) with maximum difference scaling from January to June 2021 in the US. In each of 21 questions in the DCE, participants were presented with a set of 4 quality measures and were asked to select the most and least important measures within each set. All 28 quality measures were presented an equal number of times in different permutations. In the volunteer sample, 69 eligible bereaved parents enrolled in the study; 61 parents completed the DCE (participation rate, 88.4%). Main Outcomes and Measures: Using choices participants made, a hierarchical bayesian multinomial logistic regression was fit to derive mean importance scores with 95% credible intervals (95% Crs) for each quality measure, representing the overall probability of a quality measure being selected as most important. Importance scores were rescaled proportionally from 0 to 100, with the sum of scores for all quality measures adding up to 100. This enabled interpretation of scores as the relative importance of quality measures. Result(s): Participants included 61 bereaved parents (median [range] age, 48 [24-74] years; 55 individuals self-identified as women [90.2%]; 1 American Indian or Alaska Native [1.6%], 1 Asian [1.6%], 2 Black or African American [3.3%], 1 Native Hawaiian or Pacific Islander, and 58 White [91.8%]; 58 not Hispanic or Latinx [95.1%]). Highest-priority quality measures by mean importance score included having a child's symptoms treated well (9.25 [95% Cr, 9.06-9.45]), feeling that a child's needs were heard by the health care team (8.39 [95% Cr, 8.05-8.73]), and having a goal-concordant end-of-life experience (7.45 [95% Cr, 6.84-8.05]). Lowest-priority quality measures included avoiding chemotherapy (0.33 [95% Cr, 0.21-0.45]), provision of psychosocial support for parents (1.01 [95% Cr, 0.57-1.45]), and avoiding the intensive care unit (1.09 [95% Cr, 0.74-1.43]). Rank-ordering measures by mean importance revealed that symptom management was 9 times more important to parents than psychosocial support for themselves. Conclusions and Relevance: This study found that bereaved parents prioritized end-of-life quality measures focused on symptom management and goal-concordant care while characterizing quality measures assessing their own psychosocial support and their child's hospital resource use as substantially less important. These findings suggest that future research should explore innovative strategies to measure care attributes that matter most to families of children with advanced cancer.
Identifier
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<a href="http://doi.org/10.1001/jamanetworkopen.2023.13503" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2023.13503</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
Ananth P
Bayes Theorem
Boyden JY
Child
Child Parent Relation
Cross-sectional Study
de Oliveira S
Death
Female
Feudtner C
Gross CP
Human
JAMA Network Open
Kirch R
Lindsay M
Ma X
McCollum S
Middle Aged
Mun S
neoplasm/th [Therapy]
Pitafi S
Psychology
Shabanova V
Terminal Care
Wolfe J
-
Dublin Core
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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/10.12968/ijpn.2023.29.4.188" target="_blank" rel="noreferrer noopener"> http://doi.org/10.12968/ijpn.2023.29.4.188</a>
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Nurses' effort for providing end-of-life care in paediatric oncology: a phenomenological study
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International Journal of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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child; Terminal Care; childhood cancer; terminal care; article; female; human; male; palliative therapy; clinical article; personal experience; nurse; care behavior; phenomenology; analgesia; honesty; oncology nurse; psychotrauma
Creator
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Ghaljeh M; Rezaee N; Mardani-Hamooleh M
Description
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BACKGROUND: Many children with cancer are hospitalised before the end of life and need special care. To improve the delivery of care for children, it is necessary to understand the insights, emotions and feelings of nurses. AIM: This study aimed to explore the lived experiences of nurses providing end-of-life care for children with cancer. <br/>METHOD(S): A phenomenological hermeneutic approach was used to analyse the experience of 14 oncology nurses working in a children's hospital who were caring for children with cancer. FINDINGS: Three themes and seven subthemes emerged from the analysis. The three main themes were: pain management (relieving physical pain and reducing the mental pain of the child and family); respect-based care (for the values and beliefs of the child and family and honesty in providing information to them); and negative reflections of care (psychological trauma, cultural challenges and futile care). <br/>CONCLUSION(S): The results of the present study showed that, despite the problems experienced by the nurses, they were still trying to provide life-sustaining care for children with cancer.
Identifier
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<a href="http://doi.org/10.12968/ijpn.2023.29.4.188" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2023.29.4.188</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
Analgesia
Article
care behavior
Child
Childhood Cancer
Clinical Article
Female
Ghaljeh M
Honesty
Human
International Journal of Palliative Nursing
Male
Mardani-Hamooleh M
Nurse
oncology nurse
Palliative Therapy
Personal Experience
Phenomenology
psychotrauma
Rezaee N
Terminal Care
-
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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/10.5209/psic.78677" target="_blank" rel="noreferrer noopener"> http://doi.org/10.5209/psic.78677</a>
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Title
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The care for oncologic patients undergoing pediatric palliative care and the griefs of a health team
Publisher
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Psicooncologia
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; article; female; human; male; chronic disease; palliative therapy; psychology; anxiety; clinical article; follow up; cross-sectional study; health service; cancer diagnosis; questionnaire; coronavirus disease 2019; pandemic; semi structured interview
Creator
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de Sena JGM; Melo CF; de Vasconcelos AV; Teixeira LC; Ruiz EM; Alves RSF
Description
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Introduction: The health care offered to children and adolescents with cancer has been expanded, giving space to orthothanasia and palliative care, with a comprehensive look at the subject facing the threat to the continuity of life, as well as challenging professionals to access issues related to grief. Objective(s): In order to explore this reality, this study intended to analyze how professionals experience grieving processes in the exercise of palliative care in pediatric oncology. Method(s): A qualitative research was conducted with the participation of 23 health professionals working in palliative oncology and pediatric care, who responded to a semi-structured interview script, whose analyses were performed with the support of the IRaMuTeQ (Interface de R pour les Analyses Multidimensionnelles de Textes et de Questionnaires) software. Result(s): The results were organized in four classes: in class 1, the specificities of the treatment of children with cancer and other aspects related to chronic illness are portrayed; class 2 shows that health trainings do not prepare professionals to deal with death and with patients with no possibility of cure, and these professionals have (pre-) concepts about palliative care; class 3 highlights the principles of palliative care and other factors of the work in this therapy; and class 4 deals with the bonds formed by professionals and their grieving experiences. Conclusion(s): Cure must not be a requirement for the provision of care in relation to children with cancer that can benefit from the adoption of palliative care therapy and the validation of the sensitivity of professionals.Copyright © 2023, Universidad Compultense Madrid. All rights reserved.
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<a href="http://doi.org/10.5209/psic.78677" target="_blank" rel="noreferrer noopener">10.5209/psic.78677</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
Alves RSF
anxiety
Article
Cancer Diagnosis
Chronic Disease
Clinical Article
coronavirus disease 2019
Cross-sectional Study
de Sena JGM
de Vasconcelos AV
Female
Follow Up
Health Service
Human
Male
Melo CF
Palliative Care
Palliative Therapy
Pandemic
Psicooncologia
Psychology
Questionnaire
Ruiz EM
Semi Structured Interview
Teixeira LC
-
Dublin Core
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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/10.1186/s12906-023-03924-x" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12906-023-03924-x</a>
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Title
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Supportive care for cancer-related symptoms in pediatric oncology: a qualitative study among healthcare providers
Publisher
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BMC Complementary Medicine and Therapies
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Canada; United States; Germany; childhood cancer; adult; article; cancer chemotherapy; female; human; male; quality of life; palliative therapy; aged; education; Netherlands; anxiety; philosophy; Norway; clinical article; interview; content analysis; health care personnel; qualitative research; cancer therapy; insomnia; fatigue; acute lymphoblastic leukemia; leukemia; constipation; nausea; semi structured interview; vomiting; alternative medicine; nurse; music therapy; dietitian; acupuncture; aromatherapy; integrative medicine; massage; professional practice; acupressure; play therapy; psychodrama; vincristine
Creator
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Mora DC; Jong MC; Quandt SA; Arcury TA; Kristoffersen AE; Stub T
Description
An account of the resource
Background: The aim of this study is to gain insight into the clinical experiences and perceptions that pediatric oncology experts, conventional healthcare providers, and complementary and alternative medicine (CAM) providers in Norway, Canada, Germany, the Netherlands, and the United States have with the use of supportive care, including CAM among children and adolescents with cancer. Method(s): A qualitative study was conducted using semi-structured in-depth interviews (n = 22) with healthcare providers with clinical experience working with CAM and/or other supportive care among children and adolescents with cancer from five different countries. Participants were recruited through professional associations and personal networks. Systematic content analysis was used to delineate the main themes. The analysis resulted in three themes and six subthemes. Result(s): Most participants had over 10 years of professional practice. They mostly treated children and adolescents with leukemia who suffered from adverse effects of cancer treatment, such as nausea and poor appetite. Their priorities were to identify the parents' treatment goals and help the children with their daily complaints. Some modalities frequently used were acupuncture, massage, music, and play therapy. Parents received information about supplements and diets in line with their treatment philosophies. They received education from the providers to mitigate symptoms and improve the well-being of the child. Conclusion(s): Clinical experiences of pediatric oncology experts, conventional health care providers, and CAM providers give an understanding of how supportive care modalities, including CAM, are perceived in the field and how they can be implemented as adaptational tools to manage adverse effects and to improve the quality of life of children diagnosed with cancer and the families.Copyright © 2023, The Author(s).
Identifier
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<a href="http://doi.org/10.1186/s12906-023-03924-x" target="_blank" rel="noreferrer noopener">10.1186/s12906-023-03924-x</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
acupressure
Acupuncture
Acute Lymphoblastic Leukemia
Adult
Aged
alternative medicine
anxiety
Arcury TA
Aromatherapy
Article
BMC Complementary Medicine and Therapies
Canada
Cancer Chemotherapy
Cancer Therapy
Childhood Cancer
Clinical Article
Constipation
Content Analysis
dietitian
Education
Fatigue
Female
Germany
Health Care Personnel
Human
insomnia
Integrative Medicine
Interview
Jong MC
Kristoffersen AE
Leukemia
Male
Massage
Mora DC
Music Therapy
Nausea
Netherlands
Norway
Nurse
Palliative Therapy
Philosophy
Play Therapy
Professional Practice
psychodrama
Qualitative Research
Quality Of Life
Quandt SA
Semi Structured Interview
Stub T
United States
vincristine
Vomiting
-
Dublin Core
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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/10.1097/NCC.0000000000000783" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/NCC.0000000000000783</a>
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Title
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Treatment Decision Making and Regret in Parents of Children With Incurable Cancer
Publisher
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Cancer Nursing
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; child; Decision Making; article; controlled study; female; human; male; palliative therapy; education; Only Child; risk factor; prospective study; multicenter study; decision making; propensity score; incurable cancer; risk perception
Creator
An entity primarily responsible for making the resource
Ye ZJ; Cheng MH; Zhang XY; Tang Y; Liang J; Sun Z; Liang MZ; Yu YL
Identifier
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<a href="http://doi.org/10.1097/NCC.0000000000000783" target="_blank" rel="noreferrer noopener">10.1097/NCC.0000000000000783</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
2023 SE3 - Oncology
Article
Cancer Nursing
Cheng MH
Child
Controlled Study
Decision Making
Education
Female
Human
incurable cancer
Liang J
Liang MZ
Male
Multicenter Study
Only Child
Palliative Therapy
Propensity Score
Prospective Study
risk factor
risk perception
Sun Z
Tang Y
Ye ZJ
Yu YL
Zhang XY
-
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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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/10.1002/pbc.30484" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.30484</a>
Dublin Core
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Title
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Unfolding parental knowledge, attitudes, and beliefs toward palliative care for children with cancer
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Palliative Care; childhood cancer; article; female; human; major clinical study; male; palliative therapy; pain; education; pediatrics; emotion; multicenter study; quantitative analysis; caregiver; questionnaire; structured interview; demography; Lebanon; educational status
Creator
An entity primarily responsible for making the resource
Rassam RS; Huijer HAS; Noureddine S; Smith EML; Wolfe J; Fares S; Abboud MR
Identifier
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<a href="http://doi.org/10.1002/pbc.30484" target="_blank" rel="noreferrer noopener">10.1002/pbc.30484</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
Abboud MR
Article
Caregiver
Child
Childhood Cancer
Demography
Education
Educational Status
Emotion
Fares S
Female
Huijer HAS
Human
Lebanon
Major Clinical Study
Male
Multicenter Study
Noureddine S
Pain
Palliative Care
Palliative Therapy
Pediatric Blood and Cancer
Pediatrics
quantitative analysis
Questionnaire
Rassam RS
Smith EML
Structured Interview
Wolfe J
-
Dublin Core
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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/10.1089/jpm.2023.0091" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0091</a>
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Title
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Impact of Animal-Assisted Interaction on Anxiety in Children With Advanced Cancer and Their Caregivers
Publisher
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Journal of Palliative Medicine
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; Animals; Anxiety; article; controlled study; female; human; male; Caregivers; patient care; palliative therapy; advanced cancer; caregiver; cancer patient; cancer recurrence; Only Child; nonhuman; dog; animal experiment; animal model; feasibility study; anxiety; pediatric patient; comparative effectiveness; Animal Shells; anticipation; refractory disease; State Trait Anxiety Inventory
Creator
An entity primarily responsible for making the resource
Mahoney AB; Akard TF; Cowfer BA; Dietrich MS; Newton JL; Gilmer MJ
Description
An account of the resource
Background: Pediatric patients with advanced cancer and their caregivers have unique psychosocial needs. Anxiety often worsens throughout treatment for both patients and parents, and, if undertreated, can cause suffering. Animal-assisted interaction (AAI) incorporates animals into patient care in a structured manner for the purpose of therapeutic benefit. Objective(s): To evaluate feasibility of incorporating AAI into patient care and to assess AAI effectiveness in decreasing patient and caregiver anxiety in pediatric patients with advanced cancer, defined by relapsed or refractory disease. Design(s): Randomized controlled study. Setting/Subjects: Participants were children (n=19) and parents (n=21) who were randomized to AAI group or usual care (UC) group. Measures: Participants completed weekly measures to assess anxiety, including the 20-question State-Trait Anxiety Inventory (STAI). Result(s): Our results demonstrated feasibility of the use of AAI in children with advanced cancer. While they did not reveal a significant difference in anxiety scores over the four sessions in either group, parents randomized to the AAI group had lower STAI State subscores at initial visit in comparison to the UC group. The difference in initial STAI State anxiety scores for caregivers may indicate a positive effect of AAI in reducing anxiety surrounding appointments through anticipation of seeing a therapy dog. Conclusion(s): Further research is needed to determine the effectiveness of AAI in pediatric patients with advanced cancer and their caregivers, but results are promising that participation in AAI may lessen caregiver anxiety. Clinical Trial Registration Number is: NCT03765099.
Identifier
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<a href="http://doi.org/10.1089/jpm.2023.0091" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0091</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
Advanced Cancer
Akard TF
Animal Experiment
Animal Model
Animal Shells
Animals
Anticipation
anxiety
Article
Cancer Patient
Cancer Recurrence
Caregiver
Caregivers
Child
Comparative Effectiveness
Controlled Study
Cowfer BA
Dietrich MS
Dog
Feasibility Study
Female
Gilmer MJ
Human
Journal of Palliative Medicine
Mahoney AB
Male
Newton JL
Nonhuman
Only Child
Palliative Therapy
Patient Care
pediatric patient
refractory disease
State Trait Anxiety Inventory
-
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 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/10.1080/07481187.2022.2142324" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/07481187.2022.2142324</a>
Dublin Core
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Title
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Protective and risk factors in the grieving process among cancer-bereaved
Publisher
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Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Parents; Female; Male; Risk Factors; Attitude to Death; Neoplasms; Quality of Life; Bereavement; Grief; Qualitative Studies; Human; Support Psychosocial; Thematic Analysis; Funding Source
Creator
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Rasouli O; Øglænd IS; Reinfjell T; Eilertsen MEB
Description
An account of the resource
This Norwegian nationwide study explored cancer-bereaved parents'
Identifier
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<a href="http://doi.org/10.1080/07481187.2022.2142324" target="_blank" rel="noreferrer noopener">10.1080/07481187.2022.2142324</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
Attitude To Death
Bereavement
Death studies
Eilertsen MEB
Female
Funding Source
Grief
Human
Male
Neoplasms
Øglænd IS
Parents
Qualitative Studies
Quality Of Life
Rasouli O
Reinfjell T
Risk Factors
Support Psychosocial
Thematic Analysis
-
Dublin Core
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Title
A name given to the resource
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/10.1002/pbc.30663" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.30663</a>
Dublin Core
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Title
A name given to the resource
Consultation patterns before and after embedding pediatric palliative care into a pediatric hematology/oncology clinic
Publisher
An entity responsible for making the resource available
Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Palliative Care; article; controlled study; female; human; male; retrospective study; outpatient; palliative therapy; Referral and Consultation; Hematology; clinical article; consultation; medical record review; solid tumor; rank sum test; hematology; cancer model; health care delivery; embedding
Creator
An entity primarily responsible for making the resource
Greenmyer JR; Ngo T; Smith M; Collura C; Schiltz B; McCarthy SR
Description
An account of the resource
Introduction: Palliative care is a critical component of pediatric oncology care. Embedded pediatric palliative care (PPC) is relatively new in pediatric hematology/oncology (PHO) and may improve access, utilization, and quality of PPC. In June 2020, the Mayo Clinic PPC service transitioned from an afternoon, physically independent clinic to an all-day clinic embedded within PHO. Method(s): Retrospective chart review was used to quantify consultation rates from PHO to PPC in 12-month study periods before and after establishment of an embedded clinic. Changes in descriptive statistics and consult patterns were calculated. Study periods were compared using either chi-square or Fisher's exact tests for categorical variables and Wilcox rank sum tests for continuous variables. Result(s): There was an 89% increase in consultations from PHO to PPC after initiation of an embedded clinic (n = 20 vs. n = 38 per 12 months). The absolute number of completed outpatient consults increased from three (15% of visits) pre-embedment to fourteen (37%) post-embedment (p =.082). The median number of days from first oncology visit to PPC assessment was unchanged after embedment (36 vs. 47 days, p =.98). Consults for solid tumors increased from 22% (n = 4) pre-embedment to 60% (n = 18) post-embedment (p <.05). Consults for symptom management increased from 60% (n = 12) to 87% (n = 33) (p <.05). Conclusion(s): Embedment of PPC into a PHO workspace was associated with an increased number of total consults, outpatient consults, solid tumor consults, and consults for symptom management. Our "partial-PPO" model allowed for provision of PPC in the outpatient oncology setting in a clinic where there is not enough volume to support a full-time oncology-focused clinician team.Copyright © 2023 Wiley Periodicals LLC.
Identifier
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<a href="http://doi.org/10.1002/pbc.30663" target="_blank" rel="noreferrer noopener">10.1002/pbc.30663</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
Article
cancer model
Child
Clinical Article
Collura C
Consultation
Controlled Study
embedding
Female
Greenmyer JR
Health Care Delivery
Hematology
Human
Male
McCarthy SR
Medical Record Review
Ngo T
Outpatient
Palliative Care
Palliative Therapy
Pediatric Blood and Cancer
rank sum test
Referral And Consultation
Retrospective Study
Schiltz B
Smith M
solid tumor
-
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 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/10.1007/s12094-023-03301-7" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s12094-023-03301-7</a>
Dublin Core
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Title
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Palliative care for children with central nervous system tumors: results of a Spanish multicenter study
Publisher
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Clinical and Translational Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Central Nervous System; child; Palliative Care; childhood cancer; article; controlled study; female; human; major clinical study; male; retrospective study; preschool child; palliative therapy; medulloblastoma; cancer patient; school child; multicenter study; surgery; communication disorder; motor dysfunction; opiate; sedation; central nervous system tumor; place of death; hospital mortality; dexamethasone; antiemetic agent; pontine glioma; asthenia; Central Nervous System Neoplasms
Creator
An entity primarily responsible for making the resource
Perez-Torres LM; Navarro-Marchena L; de Noriega I; Morey OM; Solano-Paez P; Rubio PE; Garrido CC; Garcia AM; Tallon GM; Huidobro LB; Portugal RR; Lopez IB; Lassaletta A; Morgenstern IA; Cruz MO; Valero AL; Llort SA; Gros SL; Marquez VC; Moreno L; Quiroga-Cantero E
Description
An account of the resource
Background: Brain tumors represent the most common cause of cancer-related death in children. Few studies concerning the palliative phase in children with brain tumors are available. Objective(s): (i) To describe the palliative phase in children with brain tumors; (ii) to determine whether the use of palliative sedation (PS) depends on the place of death, the age of the patient, or if they received specific palliative care (PC). Method(s): Retrospective multicenter study between 2010 and 2021, including children from one month to 18 years, who had died of a brain tumor. Result(s): 228 patients (59.2% male) from 10 Spanish institutions were included. Median age at diagnosis was 5 years (IQR 2-9) and median age at death was 7 years (IQR 4-11). The most frequent tumors were medulloblastoma (25.4%) and diffuse intrinsic pontine glioma (DIPG) (24.1%). Median number of antineoplastic regimens were 2 (range 0-5 regimens). During palliative phase, 52.2% of the patients were attended by PC teams, while 47.8% were cared exclusively by pediatric oncology teams. Most common concerns included motor deficit (93.4%) and asthenia (87.5%) and communication disorders (89.8%). Most frequently prescribed supportive drugs were antiemetics (83.6%), opioids (81.6%), and dexamethasone (78.5%). PS was administered to 48.7% patients. Most of them died in the hospital (85.6%), while patients who died at home required PS less frequently (14.4%) (p =.01). Conclusion(s): Children dying from CNS tumors have specific needs during palliative phase. The optimal indication of PS depended on the center experience although, in our series, it was also influenced by the place of death.Copyright © 2023, The Author(s), under exclusive licence to Federacion de Sociedades Espanolas de Oncologia (FESEO).
Identifier
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<a href="http://doi.org/10.1007/s12094-023-03301-7" target="_blank" rel="noreferrer noopener">10.1007/s12094-023-03301-7</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
antiemetic agent
Article
asthenia
Cancer Patient
Central Nervous System
Central Nervous System Neoplasms
Central Nervous System Tumor
Child
Childhood Cancer
Clinical and Translational Oncology
communication disorder
Controlled Study
Cruz MO
de Noriega Í
dexamethasone
Female
Garcia AM
Garrido CC
Gros SL
Hospital Mortality
Huidobro LB
Human
Lassaletta A
Llort SA
Lopez IB
Major Clinical Study
Male
Marquez VC
Medulloblastoma
Moreno L
Morey OM
Morgenstern IA
motor dysfunction
Multicenter Study
Navarro-Marchena L
Opiate
Palliative Care
Palliative Therapy
Perez-Torres LM
Place Of Death
pontine glioma
Portugal RR
Preschool Child
Quiroga-Cantero E
Retrospective Study
Rubio PE
School Child
Sedation
Solano-Paez P
Surgery
Tallon GM
Valero AL
-
Dublin Core
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Title
A name given to the resource
November 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
November List 2023
URL Address
<a href="http://doi.org/10.1093/geronb/gbac189" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1093/geronb/gbac189</a>
Dublin Core
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Title
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Gender Differences in Depressive Symptoms Following Child Death in Later
Publisher
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Journals of Gerontology: Series B
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Child; Female; Male; Prognosis; United States; Risk Factors; Bereavement; Parent-Child Relations; Adult; Age Factors; Mortality; Sex Factors; Middle Age; Adaptation Psychological; Fathers; Aged; Depression; Mother-Child Relations; Mothers; Human; Father-Child Relations; Evaluation; Only Child; Funding Source; Trends; Vulnerability; Psychosocial Factors; Comparative Studies; Recovery; In Adulthood; In Middle Age; In Old Age
Creator
An entity primarily responsible for making the resource
Mellencamp KA
Description
An account of the resource
Objectives: This study examined short- and long-term psychological adjustment to parental bereavement in later life for mothers and fathers. Methods: Using 9 waves of data from the United States (1998-2014 Health and Retirement Study), I estimated trajectories of mothers' and fathers' depressive symptoms surrounding child death in later life, highlighting gender differences in adjustment. Moderation analyses were performed to uncover heterogeneous trajectories across parental characteristics. Results: Mothers were more likely to experience child death and reported higher depressive symptoms prior to parental bereavement than fathers. Mothers and fathers who lost a child reported an increase in depressive symptoms that diminished over time. The short-term elevation in depressive symptoms was marginally greater for mothers than fathers, but depressive symptoms declined at a faster rate for mothers than fathers in the years following the death. These counterbalancing changes resulted in mothers and fathers returning to their respective prebereavement levels of depressive symptoms between 2 and 4 years postbereavement. Parental age moderated trajectories distinctly by gender, and the presence of surviving children buffered the impact of child death on depressive symptoms for mothers but not fathers. Discussion: Mothers more often experience child death in later life and their adjustment process differs from that of fathers, underscoring the salience of gender in shaping how older parents respond to the death of a child. Older parents and mothers without surviving children are vulnerable to prolonged elevations in depressive symptoms following the death of a child in later life.
Identifier
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<a href="http://doi.org/10.1093/geronb/gbac189" target="_blank" rel="noreferrer noopener">10.1093/geronb/gbac189</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
Adaptation Psychological
Adult
Age Factors
Aged
Bereavement
Child
Comparative Studies
Depression
Evaluation
Father-child Relations
Fathers
Female
Funding Source
Human
In Adulthood
In Middle Age
In Old Age
Journals of Gerontology Series B: Psychological Sciences & Social
Male
Mellencamp KA
Middle Age
Mortality
Mother-child Relations
Mothers
November List 2034
Only Child
Parent-child Relations
Prognosis
Psychosocial Factors
Recovery
Risk Factors
Sex Factors
Trends
United States
VULNERABILITY
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
November 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
November List 2023
URL Address
<a href="http://doi.org/10.2174/1871530323666230914114425" target="_blank" rel="noreferrer noopener"> http://doi.org/10.2174/1871530323666230914114425</a>
Dublin Core
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Title
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Paediatric Palliative Care in a Reference Centre of Inherited Metabolic Diseases
Publisher
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Endocrine, Metabolic and Immune Disorders - Drug Targets
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; Palliative Care; article; cohort analysis; female; hospital admission; human; major clinical study; male; quality of life; outpatient; palliative therapy; Metabolic Diseases; school child; patient referral; noninvasive ventilation; surgery; daily life activity; gastrostomy; metabolic disorder; pediatric patient; home visit; neurologic disease; demography; disorders of mitochondrial functions; disorders of peroxisomal functions; lysosome; peroxisome; systemic disease
Creator
An entity primarily responsible for making the resource
Saraiva BM; Santos S; Ferreira AC; Paiva M
Description
An account of the resource
INTRODUCTION: Paediatric palliative care (PPC) has a significant role in improving the quality of life of children with life-limiting or life-threatening illnesses, diminishing symptom burden, and providing holistic support to patients and families. Inherited metabolic diseases (IMD) are a group of heterogeneous diseases that often present with severe neurologic impairment, needing lifelong care and challenging symptom management. OBJECTIVE(S): Our aim was to characterize the cohort of patients with IMD followed by the paediatric palliative care team (PPCT) and to describe the provision of care provided. METHOD(S): The descriptive analysis of demographic, clinical, and care delivery data of a cohort of paediatric patients was carried out with a confirmed diagnosis of IMD, followed in a Reference Centre, in the care of PPCT between 2018 and 2023. RESULT(S): Thirteen (10%) of a total of 134 patients in the care of PPCT had a confirmed diagnosis of an IMD: 6 mitochondrial, 3 peroxisomal, 3 lysosomal, and 1 pterin metabolism disorder. The median age at referral was 9 years (0-18), the median duration of care was 2 years [2-4], median number of home visits in the last year was 2 [1-4], and median number of outpatient consults was 4 [2 -8]. Twelve patients (92%) had no autonomy in their activities of daily living. Neurologic (100%), gastrointestinal (92%), and respiratory (69%) symptoms were the main focus of care. All patients were polymedicated (5 or more different drugs). Nine (69%) had percutaneous gastrostomy and 2 (15%) had noninvasive ventilation. Median hospital admissions before and after starting care by PPCT were 4 and 1. Moreover, three patients died and one was at home. CONCLUSION(S): Mitochondrial, lysosomal, and peroxisomal disorders are complex multisystemic diseases that very often have no treatment intended to cure. These patients have a heavy symptom burden and frequent intercurrences. Addressing these symptoms is challenging, but PPC has proven to reduce hospital admissions with consequent improvement in quality of life. In the future, PPC should be available for all children and families with life-threatening conditions.Copyright© Bentham Science Publishers; For any queries, please email at epub@benthamscience.net.
Identifier
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<a href="http://doi.org/10.2174/1871530323666230914114425" target="_blank" rel="noreferrer noopener">10.2174/1871530323666230914114425</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
Article
Child
Cohort Analysis
daily life activity
Demography
disorders of mitochondrial functions
disorders of peroxisomal functions
Endocrine, metabolic & immune disorders drug targets
Female
Ferreira AC
Gastrostomy
Home Visit
Hospital Admission
Human
lysosome
Major Clinical Study
Male
Metabolic Diseases
Metabolic Disorder
Neurologic Disease
Noninvasive Ventilation
November List 2028
Outpatient
Paiva M
Palliative Care
Palliative Therapy
Patient Referral
pediatric patient
peroxisome
Quality Of Life
Santos S
Saraiva BM
School Child
Surgery
systemic disease
-
Dublin Core
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November 2023 List
Text
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November List 2023
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<a href="http://doi.org/10.3390/children10081315" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10081315</a>
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Telehealth Needs and Concerns of Stakeholders in Pediatric Palliative Home Care
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Children
Date
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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
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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
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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.
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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
-
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October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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October List 2023
URL Address
<a href="http://doi.org/10.1055/a-2156-4833" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1055/a-2156-4833</a>
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Internet Health Resources on Nocturnal Enuresis - A Readability, Quality and Accuracy Analysis
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European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie
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2023
Subject
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child; article; controlled study; female; human; male; practice guideline; clinical article; Internet; Internet; Enuresis; questionnaire; nocturnal enuresis; government; health care planning; nephrologist; urologist; reading; continence; pediatric surgeon; search engine
Creator
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Fung ACH; Lee MHL; Leung L; Chan IHY; Kenneth W
Description
An account of the resource
Introduction Nocturnal enuresis is a common yet quality-of-life-limiting paediatric condition. There is an increasing trend for parents to obtain information on the disease's nature and treatment options via the internet. However, the quality of health-related information on the internet varies greatly and is largely uncontrolled and unregulated. With this study, a readability, quality and accuracy evaluation of the health information regarding nocturnal enuresis is carried out. Materials and Methods A questionnaire was administered to parents and patients with nocturnal enuresis to determine their use of the internet to research their condition. The most common search terms were determined, and the first 30 websites returned by the most popular search engines were used to assess the quality of information about nocturnal enuresis. Each site was categorised by type and assessed for readability using the Gunning-Fog score, SMOG index and Dale-Chall score; for quality using the DISCERN score; and for accuracy by comparison to the International Children's Continence Society (ICCS) guidelines by three experienced paediatric urologists and nephrologists. Results A total of 30 websites were assessed and classified into five categories: professional (n = 13), non-profit (n = 8), commercial (n = 4), government (n= 3) and other (n= 2). The information was considered difficult for the public to comprehend, with mean Gunning-Fog, SMOG index and Dale-Chall scores of 12.1+/-4.3, 14.1+/-4.3 and 8.1+/-1.3, respectively. The mean summed DISCERN score was 41+/-11.6 out of 75. Only seven (23%) websites were considered of good quality (DISCERN score > 50). The mean accuracy score of the websites was 3.2+/- 0.6 out of 5. Commercial websites were of the poorest quality and accuracy. Websites generally scored well in providing their aims and identifying treatment benefits and options, while they lacked references and information regarding treatment risks and mechanisms. Conclusions Online information about nocturnal enuresis exists for parents; however, most websites are of suboptimal quality, readability and accuracy. Paediatric surgeons should be aware of parents' health-information-seeking behaviour and be proactive in guiding parents to identify high-quality resources.Copyright Thieme. All rights reserved.
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<a href="http://doi.org/10.1055/a-2156-4833" target="_blank" rel="noreferrer noopener">10.1055/a-2156-4833</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
Article
Chan IHY
Child
Clinical Article
continence
Controlled Study
enuresis
European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie
Female
Fung ACH
government
health care planning
Human
Internet
Kenneth W
Lee MHL
Leung L
Male
nephrologist
nocturnal enuresis
October List 2046
pediatric surgeon
Practice Guideline
Questionnaire
reading
search engine
urologist
-
Dublin Core
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Title
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October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1016/j.ssmqr.2023.100324" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.ssmqr.2023.100324</a>
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"The medicine is the easy part": Pediatric physicians' emotional labor in end-of-life care
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SSM - Qualitative Research in Health
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2023
Subject
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Terminal Care; child; terminal care; article; female; human; male; physician; clinical article; pediatrician; burnout; interview; wellbeing; university hospital; medical education; responsibility; work environment; drawing; seashore; emotional support; buffer
Creator
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Gengler AM
Description
An account of the resource
Physicians who care for children with life-threatening conditions are uniquely positioned to support families through the dying phase when treatment efforts have failed. Taking on this role for families requires a great deal of time and strategic emotional labor. Drawing on in-depth interviews with 12 physicians across two different children's hospitals on the east coast, I find that these physicians conceptualize this work as a fundamental responsibility to the children and families in their care despite believing that their formal medical training fails to prepare them for this component of their jobs. These physicians deliberately laid groundwork for the potential that children may die from their earliest interactions with patients and worked to shift families away from continued medical intervention when they believed such efforts to be futile. They described this work as deeply meaningful and rewarding, but potentially emotionally overwhelming. These physicians felt duty-bound to address what they perceived as a deficit in medical training by intentionally modeling emotionally intense exchanges with families for the next generation of practitioners. Though these dual commitments demanded extensive and potentially exhausting emotional labor, this particular group of physicians was able to use the structural features of their faculty positions in academic medical centers to buffer against potential burnout, maintain their emotional capacity at work and home, and protect their own well-being. My analysis shows that when physicians inhabit structurally favorable working conditions and conceptualize their jobs in ways that center emotional support for patients they may use these resources to work to mitigate disparities in care and take pride in their ability to provide sustained and substantive emotional support at the end of life.Copyright © 2023
Identifier
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<a href="http://doi.org/10.1016/j.ssmqr.2023.100324" target="_blank" rel="noreferrer noopener">10.1016/j.ssmqr.2023.100324</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
Article
buffer
Burnout
Child
Clinical Article
Drawing
emotional support
Female
Gengler AM
Human
Interview
Male
Medical Education
October List 2042
Pediatrician
Physician
responsibility
seashore
SSM - Qualitative Research in Health
Terminal Care
University Hospital
Wellbeing
work environment
-
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Title
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October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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October List 2023
URL Address
<a href="http://doi.org/10.1136/spcare-2023-004305" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/spcare-2023-004305</a>
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Title
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Neonatal serious illness: operational definition
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BMJ supportive & palliative care
Date
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2023
Subject
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Infant Newborn; terminal care; article; cohort analysis; controlled study; female; human; major clinical study; male; newborn; retrospective study; palliative therapy; pediatrics; infant; conversation; rank sum test; cause of death; hospital care; prognosis
Creator
An entity primarily responsible for making the resource
Guttmann K; Silverman R; Weintraub AS
Description
An account of the resource
OBJECTIVES: (1) To operationalise our previously published definition of neonatal serious illness by applying it to a patient cohort and (2) to evaluate timing of palliative care consultation, goals of care discussions and meeting serious illness criteria. METHOD(S): This was a retrospective chart review. Inborn neonates delivered between January 2006 and December 2020 who died prior to neonatal intensive care unit discharge were identified through EPIC query. Kruskal-Wallis and Mann-Whitney-U tests were used to compare time intervals relating to transition to serious illness across causes of death and other factors. chi2 tests were used to examine frequency of goals of care conversations by factors. RESULT(S): Eighty-eight per cent of patients met criteria for neonatal serious illness within 48 hours of life. There were no significant differences in transition to serious illness between preterm and term infants. Time to identification of serious illness varied significantly by cause of death. Palliative care was consulted for 5.7% of patients. CONCLUSION(S): All patients met criteria for serious illness early in life based on our definition. This definition may be useful for identifying neonates with serious illness in time to provide support. Additional work is needed to apply this definition prospectively to explore its utility for clinical care and research.Copyright © Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/spcare-2023-004305" target="_blank" rel="noreferrer noopener">10.1136/spcare-2023-004305</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
Article
BMJ Supportive & Palliative Care
Cause Of Death
Cohort Analysis
Controlled Study
Conversation
Female
Guttmann K
Hospital care
Human
Infant
Infant Newborn
Major Clinical Study
Male
Newborn
October List 2041
Palliative Therapy
Pediatrics
Prognosis
rank sum test
Retrospective Study
Silverman R
Terminal Care
Weintraub AS
-
Dublin Core
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Title
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October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1186/s12904-023-01238-w" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01238-w</a>
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Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative study
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Terminal Care; child; terminal care; article; female; human; male; palliative therapy; clinical article; education; child health care; awareness; qualitative research; funding; human experiment; semi structured interview; thematic analysis; organization; specialization
Creator
An entity primarily responsible for making the resource
Papworth A; Hackett J; Beresford B; Murtagh F; Weatherly H; Hinde S; Bedendo A; Walker G; Noyes J; Oddie S; Vasudevan C; Feltbower RG; Phillips B; Hain R; Subramanian G; Haynes A; Fraser LK
Description
An account of the resource
Background: Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative study aimed to explore regional perspectives of the successes, and challenges to the equitable coordination and delivery of end-of-life care for children in the UK. The study provides an overarching perspective on the challenges of delivering and coordinating end-of-life care for children in the UK, and the impact of these on health professionals and organisations. Previous research has not highlighted the successes in the sector, such as the formal and informal coordination of care between different services and sectors. Method(s): Semi-structured interviews with Chairs of the regional Palliative Care Networks across the UK. Chairs or co-Chairs (n = 19) of 15/16 Networks were interviewed between October-December 2021. Data were analysed using thematic analysis. Result(s): Three main themes were identified: one standalone theme ("Communication during end-of-life care"); and two overarching themes ("Getting end-of-life services and staff in the right place", with two themes: "Access to, and staffing of end-of-life care" and "Inconsistent and insufficient funding for end-of-life care services"; and "Linking up healthcare provision", with three sub-themes: "Coordination successes", "Role of the networks", and "Coordination challenges"). Good end-of-life care was facilitated through collaborative and network approaches to service provision, and effective communication with families. The implementation of 24/7 advice lines and the formalisation of joint-working arrangements were highlighted as a way to address the current challenges in the specialism. Conclusion(s): Findings demonstrate how informal and formal relationships between organisations and individuals, enabled early communication with families, and collaborative working with specialist services. Formalising these could increase knowledge and awareness of end of life care, improve staff confidence, and overall improve professionals' experiences of delivering care, and families' experiences of receiving it. There are considerable positives that come from collaborative working between different organisations and sectors, and care could be improved if these approaches are funded and formalised. There needs to be consistent funding for paediatric palliative care and there is a clear need for education and training to improve staff knowledge and confidence.Copyright © 2023, BioMed Central Ltd., part of Springer Nature.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-023-01238-w" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01238-w</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Article
Awareness
Bedendo A
Beresford B
BMC Palliative Care
Child
Child Health Care
Clinical Article
Education
Feltbower RG
Female
Fraser LK
Funding
Hackett J
Hain R
Haynes A
Hinde S
Human
Human Experiment
Male
Murtagh F
Noyes J
October List 2040
Oddie S
Organization
Palliative Therapy
Papworth A
Phillips B
Qualitative Research
Semi Structured Interview
Specialization
Subramanian G
Terminal Care
Thematic Analysis
Vasudevan C
Walker G
Weatherly H