1
40
157
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Title
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.3389/fonc.2023.1112788" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fonc.2023.1112788</a>
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Title
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The burden and scope of childhood cancer in displaced patients in Jordan: The King Hussein Cancer Center and Foundation Experience
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Frontiers in Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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child; Neoplasms; childhood cancer; article; female; human; major clinical study; male; social support; palliative therapy; health care cost; follow up; retinoblastoma; cancer patient; overall survival; cancer registry; leukemia; brain tumor; cancer center; refugee; lymphoma; bone sarcoma; Jordanian; public health; Jordan; drug cost; Foundations; Iraqi; Syrian; Yemeni
Creator
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Rihani R; Jeha S; Nababteh M; Rodriguez-Galindo C; Mansour A; Sultan I
Description
An account of the resource
Introduction: Jordan hosts one of the highest numbers of refugees per capita in the world, with the Syrian crisis leading to an influx of displaced persons to the already vulnerable population. However, limited resources and a lack of cancer-care strategies have made it difficult for refugees in Jordan to access quality cancer care. The King Hussein Cancer Center (KHCC) and Foundation (KHCF) have played a pivotal role in providing financial and medical support for displaced children with cancer, treating 968 non-Jordanian children with cancer between 2011-2022, with a median age of 6 years. Of these, 84% were fully funded by KHCF, and nationalities included Syrians (29%), Palestinians (26%), Iraqis (23%), and Yemenis (17%). Cancer diagnoses included solid tumors (44%), leukemia (23%), lymphoma (13%), bone sarcomas (9.5%), and retinoblastoma (9.1%). The median cost of treatment was JOD 18,000 (USD 25,352), with a total estimated cost of JOD 23.8 million (USD 33.5 million). More recently, in partnership with St. Jude Children's Research Hospital (SJCRH), two successive humanitarian funds (HF) were established to optimize cancer care for displaced children in Jordan.
Results: Between February 2018 and September 2022, 51 children were fully treated on KHCC-SJCRH-HF, with a median age of 6 years and nationalities including Syrians (80%), Iraqis (6%), and Yemenis (8%). The most common cancer diagnoses were leukemia (41%), lymphoma (25%), solid tumors (24%), retinoblastoma (6%), and brain tumors (4%). Of these, 94% are alive and 51% are still receiving coverage. The median coverage for patients was JOD 21,808 (USD 30,715), and the total cost of treatment on KHCC/KHCF-SJCRH/American Lebanese Syrian-Associated Charities HF1 and HF2 was JOD 1.44 million (USD 1.97 million) and JOD 1.18 million (USD 1.67 million), respectively.
Conclusion: This experience highlights the high burden of displaced children with cancer in Jordan, and the importance of local foundations like KHCC/KHCF and partnerships with international partners like SJCRH in providing lifesaving humanitarian initiatives and quality cancer care. Innovative cancer-care delivery models and sustainable financing are essential to ensure continuous coverage and access to cancer care for displaced persons in Jordan.
Identifier
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<a href="http://doi.org/10.3389/fonc.2023.1112788" target="_blank" rel="noreferrer noopener">10.3389/fonc.2023.1112788</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
Article
bone sarcoma
Brain Tumor
cancer center
Cancer Patient
Cancer Registry
Child
Childhood Cancer
drug cost
Female
Follow Up
Foundations
Frontiers in Oncology
Health Care Cost
Human
Iraqi
Jeha S
Jordan
Jordanian
Leukemia
Lymphoma
Major Clinical Study
Male
Mansour A
Nababteh M
Neoplasms
Overall Survival
Palliative Therapy
Public Health
refugee
retinoblastoma
Rihani R
Rodriguez-Galindo C
Social Support
Sultan I
Syrian
Yemeni
-
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/10.5152/fnjn.2023.0024" target="_blank" rel="noreferrer noopener"> http://doi.org/10.5152/fnjn.2023.0024</a>
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Title
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Exploration of the Strategies of Iranian Nurses in Providing Palliative Care to Children with Cancer: A Qualitative Study
Publisher
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Florence Nightingale Journal of Nursing
Date
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2023
Subject
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Child; Palliative Care; Only Child
Creator
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Ebadinejad Z; Rassouli M; Fakhr Movahedi A
Description
An account of the resource
AIM: This study aimed to explain the strategies of Iranian nurses in providing palliative care to children with cancer. METHOD: This study is a qualitative research with an approach to the conventional content analysis. The main participants were nine nurses working in ward pediatric oncology. Also based on data analysis, five parents of children, two children, one social worker, one physician, one psychologist, and one nutritionist were also included. Data were collected through semi-structured interviews and observation and were analyzed by the Elo and Kyngäs approach. Lincoln and Guba criteria were used for the trustworthiness of data analysis. RESULTS: Three conceptual categories were developed with qualitative analysis: "prevention and relief of pain and physical symptoms", "spontaneous compassion", and "strengthen parental resilience"; that were derived from the main categories: "attention to precautionary considerations," "friendly relationship of nurses with parents of children, create enjoyable moments, spontaneous assistance," "facilitate coping with current situation, perceived confrontation with child death." CONCLUSION: In this study, the results showed that nurses' strategies in providing palliative care to children with cancer were a combination of professional and spontaneous strategies.
Identifier
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<a href="http://doi.org/10.5152/fnjn.2023.0024" target="_blank" rel="noreferrer noopener">10.5152/fnjn.2023.0024</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
Child
Ebadinejad Z
Fakhr Movahedi A
Florence Nightingale Journal of Nursing
Only Child
Palliative Care
Rassouli M
-
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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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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/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163231172891</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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Pediatric Cancer and Palliative Care in Conflict Affected Area
Publisher
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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
The topic of the resource
child; Palliative Care; controlled study; female; human; major clinical study; male; palliative therapy; survival rate; pain; awareness; cancer patient; cancer survival; university hospital; opiate; conference abstract; refugee; medical society; health insurance; investment; Turkey (republic); cancer control; hospital bed capacity; Turk (people)
Creator
An entity primarily responsible for making the resource
Kutluk T
Description
An account of the resource
Background/aims: Turkey has a population fo 85 million and also hosts the larger number of refugees with 3,7 million mainly from Syrian. Globocan 2020 data estimates 233,000 new cancer cases and 126,000 deaths due to cancer. By the end of the 90s, the palliative care (PC) services were very limited with lack of trained professionals, low awareness and limited access to opioids. <br/>Method(s): The investments from Professional organizations and goverment started mainly after 2000's but still limited. The first Cancer Control Programme was released by Ministry of health (MoH) in 2008, and implemented the Palliaturk project in 2011, targeting the pain control and community based PC model. PC directive was released in 2015. <br/>Result(s): The International PC scale ranking named Turkey in group 2 in 2006, and moved up to group 3b in 2011, then in group 3a in 2017, which is the isolated PC provision. After the start of Palliaturk project in 2011, the investment continued from the MoH. The number of the beds for palliative cares were increased to 5577 in 2021 which was very low in number before 2014. Turkey also implemented the Universal Health Coverage in 2012, >98% of the population are covered by UHC. In a short survey from the 21 Southern Turkey's major University hospitals, only 8 has palliative care services and 4 has palliative care exclusive staff although providing the PC services. Twelwe was also providing the PC services for refugees. The annual number of new pediatric cancer patients is estimated around 3000 per year, the palliative care services were mainly provided within the oncology services. There were 10 paediatric PC services with 119 bed capacity in 2021 for all pediatric patiens in nation, not specifically for cancer patients. In a recent analysis of cancer in Syrian refugees living in the city of Konya, we reported the 3 year survival rates as 69.5 probably less in 5 years. We also found that the 5 years survival rates was about 30% in Syrian refugee children with cancer living in Southern Turkey. The five years survival rates for Turkish children is about 70%. <br/>Conclusion(s): There is still a need of investment on palliative care services for pediatric cancer patients and integration of PC services to current cancer care is also essential.
Identifier
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<a href="http://doi.org/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener">10.1177/02692163231172891</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
Awareness
cancer control
Cancer Patient
Cancer Survival
Child
conference abstract
Controlled Study
Female
health Insurance
Hospital Bed Capacity
Human
investment
Kutluk T
Major Clinical Study
Male
Medical Society
Opiate
Pain
Palliative Care
Palliative Medicine
Palliative Therapy
refugee
Survival Rate
Turk (people)
Turkey (republic)
University Hospital
-
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Title
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1177/2333794x231188591" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/2333794x231188591</a>
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Pediatric Oncology, Palliative Care and Low- or Middle- Income Countries: A Call for Action
Publisher
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Global Pediatric Health
Date
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2023
Subject
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palliative care; Palliative Care; cancer; global health; pediatric oncology; LMICs; pediatric palliative oncology
Creator
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Siddiqui MF; Nohra L; Saleh M; Thakkar K; Trivedi R; Moujally SN; Deeb H; Nicolas G; Emmanuel N
Description
An account of the resource
Pediatric oncology, which includes cancer screening and therapy in children, poses significant challenges in low- and middle-income countries (LMICs). Palliative care improves children's and their families' quality of life. In LMICs, palliative care resources are scarce, resulting in poor symptom management, psychological support, and spiritual care. All relevant English-language articles on pediatric palliative oncology were searched in PubMed, Google Scholar, Scopus, and Medline databases using the following keywords: "Pediatric Oncology," "Pediatric Palliative Oncology," "Pediatric Palliative Care," "Palliative Care," "Child Cancer," and "Lower- and Middle-Income Countries." This study highlights the significance of incorporating palliative care early in therapy and the recommendations may improve the competence of information provided by medical professionals to patients and families. LMICs have the potential to improve overall treatment and outcomes for child cancer patients and their families by prioritizing the integration of palliative care, guaranteeing a compassionate and dignified attitude toward the disease.
Identifier
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<a href="http://doi.org/10.1177/2333794x231188591" target="_blank" rel="noreferrer noopener">10.1177/2333794x231188591</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
Cancer
Deeb H
Emmanuel N
Global Health
Global Pediatric Health
LMICs
Moujally SN
Nicolas G
Nohra L
Palliative Care
Pediatric Oncology
pediatric palliative oncology
Saleh M
Siddiqui MF
Thakkar K
Trivedi R
-
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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/10.1111/ajr.12958" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/ajr.12958</a>
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Title
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Fifteen years of shared care for paediatric oncology, haematology and palliative patients across Queensland: The role of Regional Case Managers
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Australian Journal of Rural Health
Date
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2023
Subject
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Humans; Child; Hospitals; Neoplasms/th [Therapy]; Case Management; Neoplasms; Queensland; Case Managers; Hematology
Creator
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Slater P; Hastings Y; Nicholson J; Noyes M; Benitez L; Pollock K; Peacock R; Cox A; Gunning R; Caris K; Petersen D; Henry C; Spanner R; Beckett K; Chisholm C
Description
An account of the resource
Objective: A shared care model was implemented in 2006 in Queensland to facilitate paediatric oncology, haematology and palliative care patients receiving care as close to home as possible. Following initial diagnosis, care planning and treatment at the tertiary children's hospital, appropriate local care was coordinated by Regional Case Managers (RCMs) established at each of 10 Shared Care Units (SCUs). This enabled safe and quality regional care supported by a statewide network providing clinical governance and education. This paper examines learnings from 15 years of this shared care.
Setting: Ten hospitals throughout Queensland facilitated a statewide model of shared care for paediatric oncology, haematology and palliative care patients, supported by a tertiary hub in Brisbane.
Participants: Regional Case Managers in Shared Care Units and their supporting staff.
Design: Staff from SCUs were surveyed and focus group interviews conducted.
Results: The paper reviews the attributes, knowledge and experience required for RCMs. Standards of care were supported through education workshops, clinical placements, chemotherapy credentialing, guidelines and standards. RCMs facilitated communication and information sharing with the tertiary centre, advocated for their cohort of patients locally and streamlined and supported the family's experience of care.
Conclusion: The RCM role provided invaluable clinical leadership for the care of paediatric oncology, haematology and palliative patients across Queensland. As new treatments evolve, the expertise and coordination provided by the RCMs will be even more critical. Achieving high-quality shared care outcomes is underpinned by the RCMs drive to achieve statewide safety and support for this cohort of children.
Identifier
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<a href="http://doi.org/10.1111/ajr.12958" target="_blank" rel="noreferrer noopener">10.1111/ajr.12958</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
Australian Journal of Rural Health
Beckett K
Benitez L
Caris K
Case Management
Case Managers
Child
Chisholm C
Cox A
Gunning R
Hastings Y
Hematology
Henry C
Hospitals
Humans
Neoplasms
Neoplasms/th [therapy]
Nicholson J
Noyes M
Peacock R
Petersen D
Pollock K
Queensland
Slater P
Spanner R
-
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/10.1200/go.22.00281" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1200/go.22.00281</a>
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Title
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Communication of Early Integration of Palliative Care for Children With Cancer in Latin America: The Care as a Vessel Metaphor
Publisher
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JCO Global 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
Humans; Child; Communication; Palliative Care; Latin America; Neoplasms/therapy; Metaphor; Latin America/epidemiology
Creator
An entity primarily responsible for making the resource
Garcia-Quintero X; Cleves D; Cuervo MI; McNeil M; Salek M; Robertson EG; Gomez W; Baker JN; Kaye EC
Description
An account of the resource
``Over the past two decades, pediatric palliative care (PPC) has evolved significantly, moving away from the concept of care provided solely at end-of-life and toward the concept of holistic, supportive care provided synergistically with disease-directed therapy across the illness course.1 Presently, the WHO defines PPC as holistic care involving all aspects of the life of a child with serious illness and their family, including the care and support of the body, mind, and spirit.2 As such, the WHO advocates for PPC provision to begin at the time of diagnosis of a life-limiting condition and continue across treatment, regardless of whether the goal is cure, life prolongation, or comfort.3 Numerous guidelines endorsed by national organizations similarly advocate for early integration of PPC in the care of patients with pediatric cancer,4-7 recognizing that involvement of PPC concurrently with cancer-directed treatment promotes patient-and family-centered care, aligns treatment with goals of care, and optimizes supportive care and quality of life.2,4-8...``
Identifier
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<a href="http://doi.org/10.1200/go.22.00281" target="_blank" rel="noreferrer noopener">10.1200/go.22.00281</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
Baker JN
Child
Cleves D
Communication
Cuervo MI
García-Quintero X
Gomez W
Humans
JCO Global Oncology
Kaye EC
Latin America
Latin America/epidemiology
McNeil M
Metaphor
Neoplasms/therapy
Palliative Care
Robertson EG
Salek M
-
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/10.1016/j.wombi.2022.04.006" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.wombi.2022.04.006</a>
Dublin Core
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Exploring the impact of healthcare workers communication with women who have experienced stillbirth in Malawi, Tanzania and Zambia. A grounded theory study
Publisher
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Women and Birth
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Culture; Emotion work; Grief; Healthcare workers communication; News-breaking; Stillbirth.
Creator
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Actis DV; Lavender T; Laisser R; Chimwaza A; Chisuse I; Kasengele CT; Kimaro D; Kuzenza FD; Lyangenda K; Mwamadi M; Shayo H; Tuwele K; Wakasiaka S; Bedwell C
Description
An account of the resource
Communication and interaction with healthcare workers at the time of stillbirth remain in parents' long-term memories and impact on emotional and psychological well-being. Cultural attitudes and norms influence how stillbirth is acknowledged and discussed in society. There is limited evidence on how women from sub-Saharan Africa became aware of the death of their babies. This research explored how women perceived the approach adopted by healthcare workers when the news of their stillbirth was disclosed to them. Grounded theory study. Women (n = 33) who had birthed a stillborn baby in the preceding 12 months were purposively sampled and participated in in-depth interviews (9 in Zambia, 16 in Tanzania and 8 in Malawi). Informed consent was gained from all participants. Data were analysed via a coding process using constant comparative analysis. Women sacrificed individualized and personal grieving strategies to conform and behave according to what was expected within their community. An overarching theme of cultural conformity overrides personal grief incorporated four sub-themes: perceiving something was wrong , the unexpected outcome , experience contrasting emotions , bonding with the baby. Most participants embarked on a negative 'emotion work' to adapt and suppress emotions and grief due to cultural expectations. Inability to voice the trauma of losing a baby may lead to perinatal mental health issues and needs addressing. Maternity healthcare workers should encourage women to express their feelings and grief. Appropriate training in perinatal bereavement care including good communication, appropriate attitudes and provision of meaningful information to grieving women is recommended.
Identifier
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<a href="http://doi.org/10.1016/j.wombi.2022.04.006" target="_blank" rel="noreferrer noopener">10.1016/j.wombi.2022.04.006</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
Actis DV
Bedwell C
Chimwaza A
Chisuse I
Culture
Emotion work
Grief
Healthcare workers communication
Kasengele CT
Kimaro D
Kuzenza FD
Laisser R
Lavender T
Lyangenda K
Mwamadi M
News-breaking
Shayo H
Stillbirth.
Tuwele K
Wakasiaka S
Women and Birth
-
Dublin Core
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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/10.1080/07347332.2022.2160944" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/07347332.2022.2160944</a>
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Implementation of evidence-based psychosocial care in six pediatric oncology units across Pakistan
Publisher
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Journal of Psychosocial Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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palliative care; pediatric; quality of life; family; oncology; psychosocial; Pakistan; anxiety/depression
Creator
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Farooq W; Nur YA; Baig N; Najmi A; Raza MR
Description
An account of the resource
BACKGROUND: Despite rising childhood cancer incidence, low-middle income countries often fall short of quality resources to prioritize and develop psycho-oncology services. Patients and families suffering from cancer are subject to great psychological distress and require continuous psychosocial support. Unfortunately, a lack of mental health awareness and trained providers remains a pertinent issue in resource-strained countries such as Pakistan. METHODS: IHHN has a well-established Psychosocial Department for pediatric oncology patients. Mental health counseling, child life, palliative care, bereavement and, social support are provided by a team of trained psychologists and social workers. In an effort to promote the implementation of this psychosocial model, partnerships were formed with public-sector pediatric oncology units and a structured one week online training module was conducted followed by a 1 week hands-on training. RESULTS: Of the total 67 participants registered, 24 were eligible for certificates. The course was open to healthcare workers around the country, considering that dedicated psychosocial personnel are not present in all units. The highest number of participants were from Karachi, accounting for 56.7% and were psychologists, 32.8%. On feedback, all participants said they would recommend this course to others and 80% chose self-motivation as the reason for enrolling compared to 12% who chose workplace requirement and 4% chose certification. Psychosocial workers selected for hands-on training were empowered to implement the POD model at their units and mentorship was continued after the training. CONCLUSION: Establishment of counseling and mental health services must be prioritized and integrated into childhood cancer healthcare delivery. Further studies are needed for establishing psychosocial models in low resource settings.
Identifier
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<a href="http://doi.org/10.1080/07347332.2022.2160944" target="_blank" rel="noreferrer noopener">10.1080/07347332.2022.2160944</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
anxiety/depression
Baig N
Family
Farooq W
Journal Of Psychosocial Oncology
Najmi A
Nur YA
Oncology
Pakistan
Palliative Care
Pediatric
psychosocial
Quality Of Life
Raza MR
-
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/10.1177/10499091221149153" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/10499091221149153</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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Listening to the Residents: The Perception of Pediatric Palliative Care Education in a Residency Program in Brazil
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
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palliative care; pediatrics; child health; Brazil; Internship and Residency; medical education; comprehensive health care; medical residency
Creator
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Fiuza M; Silva Junior G
Description
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Background: In Brazil, a relevant portion and children suffer without receiving adequate control of their symptoms. Failures in pediatrician training may contribute to this problem. Objective: The goal was to characterize the educational failures perceived by pediatric residents for pediatric palliative care throughout their training. Methods: A cross-sectional study was carried out, with the application of the Pediatric Palliative Care Questionnaire (QCPP) to residents of three pediatrics and specialties of public limits at the Escola de Saúde Pública do Estado do Ceará (ESP-CE), Brazil. Results: The response rate was 68 out of 123 residents (55%). It was reported that they did not consider the specialty as patient care or death. He also feels comfortable explaining the physiological process of dying to his family. The time devoted to CPP teaching, as well as medical residency, was considered reduced. For those who attended a subspecialty, the number they signaled was "0 hours" at 82.40%. Conclusion: It can be said that the main flaws in the teaching-learning process of pediatric residents were the number of hours of training in teaching, communication skills training (through participation in conferences) and guidance on the practice of teaching suspension of invasive measures. It was observed that less time reserved for this learning is related to lesser knowledge and greater barriers to the use of palliative care. Those who declared themselves able to take care of children with life-organizing conditions received some teaching in CPP.
Identifier
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<a href="http://doi.org/10.1177/10499091221149153" target="_blank" rel="noreferrer noopener">10.1177/10499091221149153</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
American Journal Of Hospice And Palliative Care
Brazil
Child Health
Comprehensive Health Care
Fiuza M
Internship And Residency
Medical Education
medical residency
Palliative Care
Pediatrics
Silva Junior G
-
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>
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Title
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Ideal vs Actual Timing of Palliative Care Integration for Children With Cancer in Latin America
Publisher
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JAMA Network Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Humans; Child; Female; Palliative Care; Quality of Life; Physicians; Only Child; Latin America; Neoplasms/therapy
Creator
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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
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<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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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/10.1037/tra0001116" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1037/tra0001116</a>
Dublin Core
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Social support and prolonged grief disorder symptoms in parents who lost their only child from urban and rural China
Publisher
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Psychological Trauma: Theory, Research, Practice, and Policy
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Parents; Grief; social support; China; Social Support; Symptoms; International Classification of Diseases; Only Children; parents who lost their only child (shiduers); prolonged grief disorder (PGD); Rural Environments; urban/rural area
Creator
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Song C; Fu Z; Li W; Yu Y; Ma J; Li X; Wang J
Description
An account of the resource
Objective: The one-child policy has existed in China for more than 30 years. It brought benefits to the country's economic development and reduced the magnitude of the population within a short period. However, it has led to the emergence of a significant number of parents who have lost their only child, referred to as shiduers (失独者). This study explored the symptoms of prolonged grief disorder (PGD) among shiduers and their relationship with the social support shiduers received after they lost the child, specifically accounting for the disparity between rural and urban areas. Method: In total, 405 participants were recruited with a mean age of 60.37 years (SD = 7.78). Around 68.75% were female, and 58.66% were urban shiduers. They were asked to complete a series of self-reported questionnaires, including demographic information, the Social Support Rate Scale, and the Prolonged Grief-13. Results: First, 29.63% of the participants (N = 120) fulfilled the International Classification of Diseases (11th rev.) diagnostic criteria for PGD symptoms; second, PGD symptoms of shiduers were negatively related to social support, including objective support, subjective support, and the availability of support; and third, urban/rural location moderated the effect of objective support on the PGD symptoms of shiduers, but not the effect of subjective support on PGD symptoms. Furthermore, the simple-slope tests indicated that the shiduers in rural areas benefited most from objective support. Conclusions: The present results revealed high rates of PGD symptoms in Chinese shiduers, and our findings highlight the important role of urban/rural location in the relationship between social support and PGD symptoms. (PsycInfo Database Record (c) 2023 APA, all rights reserved) This study could help government leaders and primary health care workers to create targeted programs for shiduers in the future, especially those living in rural areas. (PsycInfo Database Record (c) 2023 APA, all rights reserved)
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<a href="http://doi.org/10.1037/tra0001116" target="_blank" rel="noreferrer noopener">10.1037/tra0001116</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
China
Fu Z
Grief
International Classification of Diseases
Li W
Li X
Ma J
Only Children
Parents
parents who lost their only child (shiduers)
prolonged grief disorder (PGD)
Psychological Trauma: Theory, Research, Practice, and Policy
Rural Environments
Social Support
Song C
Symptoms
urban/rural area
Wang J
Yu Y
-
Dublin Core
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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/10.1002/pon.6002" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pon.6002</a>
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Unmet palliative care needs of a child with cancer in Indonesia
Publisher
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Psycho-Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Humans; Child; Palliative Care; Neoplasms/th [Therapy]; Neoplasms; Only Child; Hospice and Palliative Care Nursing; Indonesia
Creator
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Vassileva S; Pangarso AWS; Mulatsih S; Sitaresmi M; Kaspers G; Mostert S
Description
An account of the resource
Key points Childhood cancer survival varies greatly between high-income (80%) versus Low and middle-income countries (LMIC) (<20%). To bridge this gap, provision of aggressive curative treatment has been prioritized in latter countries. Palliative care (PC), by contrast, has received little or no attention When children who can no longer be cured from cancer continue aggressive treatment, they may suffer unnecessarily from pain, discomfort and low quality-of-life during prolonged periods In many LMIC, families are often not given the opportunity to participate in decision-making whether they want to extend the life of their children or focus on relieving pain and discomfort This case report illustrates difficulties that Indonesian families may face when their child is diagnosed with cancer, receives intensive chemotherapy despite poor prognosis and severe side-effects, and is not informed about choices of treatment children have during final illness This study highlights the importance to start PC immediately at diagnosis. Both physical and psychosocial wellbeing of patients need to be closely monitored through regular symptom burden assessments. Training on open communication in PC is required in universities and hospitals to enable shared decision-making and improve quality-of-life of children and their families
Identifier
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<a href="http://doi.org/10.1002/pon.6002" target="_blank" rel="noreferrer noopener">10.1002/pon.6002</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
Child
Hospice And Palliative Care Nursing
Humans
Indonesia
Kaspers G
Mostert S
Mulatsih S
Neoplasms
Neoplasms/th [therapy]
Only Child
Palliative Care
Pangarso AWS
Psycho-Oncology
Sitaresmi M
Vassileva S
-
Dublin Core
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Title
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1089/pmr.2022.0037" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/pmr.2022.0037</a>
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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
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<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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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/10.1017/S147895152200181X" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S147895152200181X</a>
Dublin Core
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Title
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Psychometric properties of the Turkish version of the Stress Scale for Nurses Providing End-of-Life Care for Children
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; Terminal Care; terminal care; article; controlled study; human; Psychometrics; content validity; construct validity; reliability; nurse; wellbeing; intervention study; checklist; pediatric nurse; Turkey (republic); physiological stress; confirmatory factor analysis; Cronbach alpha coefficient; internal consistency
Creator
An entity primarily responsible for making the resource
Ayran G; Cevik Ozdemir HN
Description
An account of the resource
OBJECTIVES: This study was carried out to evaluate the validity and reliability of the Stress Scale for Pediatric Nurses Performing End-of-Life Care for Children in Turkey. METHOD(S): This was a methodological study conducted with 222 pediatric nurses. Data were collected using the information form for pediatric nurses and the "stress scale for nurses performing end-of-life care for children." Content and construct validity, item analysis, confirmatory factor analysis and internal consistency were used to evaluate the data. The Global Pharmaceutical Regulatory Affairs Summit checklist was followed in this study. RESULT(S): The content validity index of the scale was 0.93. Item-total score correlation values ranged from 0.594 to 0.885. The 5-factor structure of the scale was confirmed as a result of confirmatory factor analysis. Factor loads were greater than 0.30, and fit indices were greater than 0.80. The Cronbach's alpha coefficient of the Turkish version of the scale was 0.97. SIGNIFICANCE OF RESULTS: The stress scale for nurses performing end-of-life care for children is a valid and reliable measurement tool for the Turkish sample. This scale facilitates the assessment of the stress levels of pediatric nurses who provide end-of-life care to children. Also, this scale can be used in interventional studies to improve the well-being of pediatric nurses.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/S147895152200181X" target="_blank" rel="noreferrer noopener">10.1017/S147895152200181X</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
Article
Ayran G
Cevik Ozdemir HN
Checklist
Child
confirmatory factor analysis
construct validity
content validity
Controlled Study
Cronbach alpha coefficient
Human
Internal Consistency
intervention study
Nurse
Palliative And Supportive Care
pediatric nurse
Physiological stress
Psychometrics
Reliability
Terminal Care
Turkey (republic)
Wellbeing
-
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/10.1097/MPH.0000000000002564" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/MPH.0000000000002564</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
Effects of COVID-19 on Pediatric Cancer Care: A Multicenter Study of 11 Middle Eastern Countries
Publisher
An entity responsible for making the resource available
Journal of Pediatric Hematology/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
childhood cancer; article; cancer chemotherapy; human; Middle East; cancer palliative therapy; health care access; low income country; middle income country; health care availability; social status; cancer center; coronavirus disease 2019; pandemic; telemedicine; cancer radiotherapy; cancer therapy; cancer surgery; pediatric oncologist; high income country; drug shortage; emergency surgery; granulocyte colony stimulating factor/pv [Special Situation for Pharmacovigilance]; prophylaxis; social distancing; therapy delay
Creator
An entity primarily responsible for making the resource
Elzembely MM; Al Rawas A; Al-Hebshi A; Alhadi A; Ibrahim AK; Zein AA; Ragab I; Alshamsi ET; Dammag E; Gachi F; Zain GH; Mohammad HS; Haddad H; Boudiaf H; Alharbi I; Sultan I; Salami KH; Bayoumy MS; Al-Mulla NA; Al Mashaikhi N; Almajali RM; Farah R; Al Daama SA; Ahmad S; Ragab SM; Fadel SH; Ahmed S; Al-Sweedan S; Abdelmabood S; Kaleem WK; Madney Y
Description
An account of the resource
During the COVID-19 pandemic, major challenges are facing pediatric cancer centers regarding access to cancer centers, continuity of the anti-cancer therapy, hospital admission, and infection protection precautions. Pediatric oncologists actively treating children with cancer from 29 cancer centers at 11 countries were asked to answer a survey from May 2020 to August 2020 either directly or through the internet. COVID-19 pandemic affected the access to pediatric cancer care in the form of difficulty in reaching the center in 22 (75.9%) centers and affection of patients'flow in 21 (72.4%) centers. Health care professionals (HCP) were infected with COVID-19 in 20 (69%) surveyed centers. Eighteen centers (62%) modified the treatment guidelines. Care of follow-up patients was provided in-hospital in 8(27.6%) centers, through telemedicine in 10 (34.5%) centers, and just delayed in 11 (38%) centers. Pediatric oncologists had different expectations about the future effects of COVID-19 on pediatric cancer care. Seventy-six percent of pediatric oncologists think the COVID-19 pandemic will increase the use of telemedicine. Fifty-five percent of pediatric oncologists think if the COVID-19 pandemic persists, we will need to change chemotherapy protocols to less myelosuppressive ones. Collaborative studies are required to prioritize pediatric cancer management during COVID-19 era.Copyright © 2023 Lippincott Williams and Wilkins. All rights reserved.
Identifier
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<a href="http://doi.org/10.1097/MPH.0000000000002564" target="_blank" rel="noreferrer noopener">10.1097/MPH.0000000000002564</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
Abdelmabood S
Ahmad S
Ahmed S
Al Daama SA
Al Mashaikhi N
Al Rawas A
Al-Hebshi A
Al-Mulla NA
Al-Sweedan S
Alhadi A
Alharbi I
Almajali RM
Alshamsi ET
Article
Bayoumy MS
Boudiaf H
cancer center
Cancer Chemotherapy
Cancer Palliative Therapy
cancer radiotherapy
cancer surgery
Cancer Therapy
Childhood Cancer
coronavirus disease 2019
Dammag E
drug shortage
Elzembely MM
emergency surgery
Fadel SH
Farah R
Gachi F
granulocyte colony stimulating factor/pv [Special Situation for Pharmacovigilance]
Haddad H
Health Care Access
Health Care Availability
high income country
Human
Ibrahim AK
Journal Of Pediatric Hematology/oncology
Kaleem WK
low income country
Madney Y
Middle East
middle income country
Mohammad HS
Pandemic
pediatric oncologist
prophylaxis
Ragab I
Ragab SM
Salami KH
social distancing
social status
Sultan I
Telemedicine
therapy delay
Zain GH
Zein AA
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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/10.3389/fonc.2022.1025757" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fonc.2022.1025757</a>
Dublin Core
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Title
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Libyan cancer patients at King Hussein Cancer Center for more than a decade, the current situation, and a future vision
Publisher
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Frontiers in Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
awareness; gastrointestinal tract; breast; hematolymphoid; King Hussein Cancer Center; Libyan cancer patients; screening programs
Creator
An entity primarily responsible for making the resource
Erashdi M; Al-Ani A; Mansour A; Al-Hussaini M
Description
An account of the resource
BACKGROUND: Since 2011, the Libyan civil war crisis had affected all dimensions of livelihood including cancer care. This has resulted in a steady incline in the number of Libyan patients with cancer seeking oncologic care and management in Tunisia, Egypt and Jordan, among others. King Hussein Cancer Center (KHCC) has been one of the main destinations for Libyan patients with cancer for more than a decade. AIM: We are reporting on the characteristics of Libyan patients with cancer presenting to KHCC during the past fourteen years. METHODS: We performed a retrospective chart review of all Libyan patients with cancer presenting to KHCC between 2006 and 2019. RESULTS: A total of 3170 records were included in the final analysis. The overall sample was predominantly adults (71%) with a male-to-female ratio of 1:1.2. Overall, the most common referred cancers to KHCC were breast (21%), hematolymphoid (HL) (17%), and gastrointestinal tract (GIT) (16.2%) cancers. Breast cancer was the most common among adult females (41.7%), GIT among adult males (23.6%), and HL among pediatrics (38.5%). Around 37.8% of patients presented with distant metastasis at their first encounter at KHCC, among which 14.7% were candidates for palliative care. CONCLUSION: The sustenance of treatment for Libyan patients with cancer requires extensive collaboration between governmental and private sectors. The Libyan oncological landscape could benefit from national screening and awareness programs, twining programs and telemedicine, introduction of multidisciplinary boards, and the formulation of a national cancer registry. Adopting the successful models at KHCC can help to augment the oncology services within the Libyan healthcare sector.
Identifier
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<a href="http://doi.org/10.3389/fonc.2022.1025757" target="_blank" rel="noreferrer noopener">10.3389/fonc.2022.1025757</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 SE5 - Low Resource Setting
Al-Ani A
Al-Hussaini M
Awareness
breast
Erashdi M
Frontiers in Oncology
gastrointestinal tract
hematolymphoid
King Hussein Cancer Center
Libyan cancer patients
Mansour A
screening programs
-
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>
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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
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/10.26719/emhj.22.038" target="_blank" rel="noreferrer noopener"> http://doi.org/10.26719/emhj.22.038</a>
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Title
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Palliative care models and innovations in 4 Eastern Mediterranean Region countries: a case-based study
Publisher
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Eastern Mediterranean Health Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Palliative Care; Diffusion of Innovation; Quality Improvement; Case-Control Studies; Program Development; Program Implementation; Human; Pediatric Care; Community Service; Leaders; Mediterranean Region
Creator
An entity primarily responsible for making the resource
Krakauer E; Al-Shammary SA; Duraisamy B; Rassouli M; Rizkallah R; Fadhil S; Osman H
Description
An account of the resource
Background: There is a global agreement that palliative care should be universally accessible. However, in low- and middle- income countries and conflict zones, most people lack access to it. In the Eastern Mediterranean Region (EMR), no country has achieved integration of palliative care into its health care system, and only 4 countries have better-than-isolated palliative care provision. Aims: To promote and guide palliative care improvement in the EMR, with case studies showing the successes and challenges of palliative care implementation from 4 countries in the Region. Methods: We developed a structured, succinct, case-writing format and invited palliative care leaders in the EMR to use it to describe successes and challenges in palliative care implementation in their countries. Results: Within the EMR, in addition to many challenges and needs, there are examples of successful palliative care policy development, community-based service creation, and paediatric palliative care implementation. Conclusion: The experiences of the regional palliative care leaders documented in succinct, structured case studies, can help guide regional palliative care development in the EMR and other regions. Contexte : Il existe un accord mondial sur le fait que les soins palliatifs devraient être universellement accessibles. Cependant, dans les pays à revenu faible et intermédiaire et les zones de conflit, la plupart des personnes n' y ont pas accès. Dans la Région de la Méditerranée orientale, aucun pays n'est parvenu à intégrer les soins palliatifs dans son système de soins de santé, et seuls quatre pays disposent d'une offre de soins palliatifs qui sont en voie d'intégration. Objectifs : Promouvoir et guider l'amélioration des soins palliatifs dans la Région de la Méditerranée orientale, par le biais d'études de cas montrant les succès et les défis de la mise en oeuvre des soins palliatifs dans quatre pays de la Région. Méthodes : Nous avons mis au point un modèle de rédaction de cas structuré et succinct, et nous avons invité les responsables des soins palliatifs dans la Région de la Méditerranée orientale à s'en servir pour décrire les succès et les défis de la mise en oeuvre de ces soins dans leurs pays. Résultats : Dans la Région de la Méditerranée orientale, outre les nombreux défis et besoins, il existe des exemples de réussite concernant l'élaboration de politiques en matière de soins palliatifs, la mise en place de services communautaires et la mise en oeuvre des soins palliatifs pédiatriques. Conclusion : Les expériences réalisées par les responsables régionaux des soins palliatifs, qui sont documentées dans des études de cas structurées succintes, permettent de guider la mise en place des soins palliatifs au niveau régional.
Identifier
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<a href="http://doi.org/10.26719/emhj.22.038" target="_blank" rel="noreferrer noopener">10.26719/emhj.22.038</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
Al-Shammary SA
Case-Control Studies
Community Service
Diffusion of Innovation
Duraisamy B
Eastern Mediterranean Health Journal
Fadhil S
Human
Krakauer E
Leaders
Mediterranean Region
Osman H
Palliative Care
Pediatric Care
Program Development
Program Implementation
Quality Improvement
Rassouli M
Rizkallah R
-
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/10.1002/cam4.5213" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/cam4.5213</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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Regional adaptation of the education in palliative and end-of-life Care Pediatrics (EPEC-Pediatrics) curriculum in Eurasia
Publisher
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Cancer 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
Humans; Child; pediatric palliative care; Terminal Care; education; Palliative Care/methods; Curriculum; Covid-19; Terminal Care; pediatric oncology; Eurasia; Enteropathogenic Escherichia coli
Creator
An entity primarily responsible for making the resource
McNeil MJ; Ehrlich B; Yakimkova T; Wang H; Mishkova V; Bezler Z; Kumirova E; Madni A; Movsisyan N; Williams K; Baizakova B; Borisevich M; Chatman G; Erimbetova I; Quintero XG; Golban R; Kirby B; Nunez P; Ranadive R; Sakhar N; Sonnenfelt J; Volkova A; Moreira D; Friedrichsdorf SJ; Wolfe J; Remke S; Hauser J; Devidas M; Baker JN; Agulnik A
Description
An account of the resource
BACKGROUND: Pediatric palliative care (PPC) is a priority to improve pediatric hematology oncology (PHO) care in Eurasia. However, there are limited regional opportunities for PPC education. We describe the adaptation and implementation of a bilingual end-user Education in Palliative and End-of-Life Care (EPEC)-Pediatrics course for PHO clinicians in Eurasia. METHODS: Due to COVID-19, this course was delivered virtually, consisting of prerecorded, asynchronous lectures, and a bilingual workshop with interactive lectures and small group sessions. A pre-postcourse design was used to evaluate the knowledge acquisition of the participants including their knowledge alignment with World Health Organization (WHO) guidance, ideal timing of palliative care, and comfort in providing palliative care to their patients. Questions were mostly quantitative with multiple choice or Likert scale options, supplemented by free-text responses. RESULTS: A total of 44 (76%) participants from 14 countries completed all components of the course including pre- and postcourse assessments. Participant alignment with WHO guidance improved from 75% in the pre- to 90% in the postcourse assessments (p < 0.001). After participation, 93% felt more confident controlling the suffering of children at the end of life, 91% felt more confident in prescribing opioids and managing pain, and 98% better understood how to hold difficult conversations with patients and families. Most participants (98%) stated that they will change their clinical practice based on the skills and knowledge gained in this course. CONCLUSIONS: We present a successful regional adaptation of the EPEC-Pediatrics curriculum, including novel delivery of course content via a virtual bilingual format. This course resulted in significant improvement in participant attitudes and knowledge of PPC along with an understanding of the ideal timing of palliative care consultation and comfort in providing PPC to children with cancer. We plan to incorporate participant feedback to improve the course and repeat it annually to improve access to high-quality palliative care education for PHO clinicians in Eurasia.
Identifier
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<a href="http://doi.org/10.1002/cam4.5213" target="_blank" rel="noreferrer noopener">10.1002/cam4.5213</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
Agulnik A
Baizakova B
Baker JN
Bezler Z
Borisevich M
Cancer Medicine
Chatman G
Child
COVID-19
Curriculum
Devidas M
Education
Ehrlich B
Enteropathogenic Escherichia coli
Erimbetova I
Eurasia
Friedrichsdorf SJ
Golban R
Hauser J
Humans
Kirby B
Kumirova E
Madni A
McNeil MJ
Mishkova V
Moreira D
Movsisyan N
Nunez P
Palliative Care/methods
Pediatric Oncology
Pediatric Palliative Care
Quintero XG
Ranadive R
Remke S
Sakhar N
Sonnenfelt J
Terminal Care
Volkova A
Wang H
Williams K
Wolfe J
Yakimkova T
-
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
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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
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
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
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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/10.1017/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
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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
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
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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/10.1007/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
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Clinical and genetic characteristics of Tunisian children with infantile nephropathic cystinosis
Publisher
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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>
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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
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
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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/10.3390/children8040275" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children8040275</a>
Dublin Core
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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
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Adinani H; Campbell L; El-Mallawany NK; Slone J; Mehta P; Bacha J
Description
An account of the resource
Treating Kaposi sarcoma (KS) in children, adolescents, and young adults (AYA) remains a challenge in low-and middle-income countries (LMIC) where chemotherapy options and availability are limited. We describe a retrospective cohort review of pediatric patients with KS treated with paclitaxel in Mbeya, Tanzania, between 1 March 2011 and 31 December 2019. Paclitaxel was given to patients who had KS relapse, a contraindication to bleomycin, vincristine, and doxorubicin (ABV), special circumstances in which a clinician determined that paclitaxel was preferable to ABV, or experienced treatment failure, defined as persistent KS symptoms at the completion of treatment. All patients also received multidisciplinary palliative care. Seventeen patients aged 5.1-21.3 years received paclitaxel, of whom 47.1% (8/17) had treatment failure, 29.4% (5/17) received paclitaxel as initial treatment, and 23.5% (4/17) had relapsed. All HIV positive patients (16/17) were given anti-retroviral therapy (ART) and 87.5% (14/16) achieved viral load <1000 cp/mL. At censure, 82.3% (14/17) of patients were alive-71.4% (10/14) achieved complete clinical remission and 28.6% (4/14) achieved a partial response. The median follow up was 37.3 months (range 8.0-83.5, IQR 19.7-41.6), and no patients were lost to follow up. In this cohort, high rates of long-term survival and favorable outcomes were possible with paclitaxel treatment.Copyright © 2021 by the authors. Licensee MDPI, Basel, Switzerland.
Identifier
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<a href="http://doi.org/10.3390/children8040275" target="_blank" rel="noreferrer noopener">10.3390/children8040275</a>
Rights
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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 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
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.3390/children10040705" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10040705</a>
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Title
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Silent Tears of Midwives: 'I Want Every Mother Who Gives Birth to Have Her Baby Alive'-A Narrative Inquiry of Midwives Experiences of Very Early Neonatal Death from Tanzania
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Midwives; Neonatal Death
Creator
An entity primarily responsible for making the resource
Becker J; Becker C; Abeysekera R; Moir J; Gray M; Shimwela M; Oprescu F
Description
An account of the resource
Background: Midwives working in settings with limited clinical resources experience high rates of very early neonatal deaths. Midwives manage the impact of this grief and trauma almost daily, which may affect patient care and their own well-being. Research aims: To explore how midwives are impacted by and cope with high rates of very early neonatal deaths. To document midwives' insights and local solutions that may reduce very early neonatal deaths in limited resource settings. To document the stories of midwives in order to create awareness and garner support for midwives and their critical work in low resource settings. Methods: Narrative inquiry utilizing semi structured interviews. Twenty-one midwives with at least six months experience who had experienced or witnessed very early neonatal death were interviewed. Data were audio recorded and transcribed, and reflexive thematic analysis of transcripts was conducted. Results and discussion: Three themes were identified: (1) deep sadness resulting from very early neonatal deaths leading to internal struggles; (2) use of spirituality, including prayer and occasional beliefs that unexplainable deaths were 'God's plan'; and (3) development of resilience by seeking solutions, educating themselves, taking accountability and guiding mothers. Participating midwives noted that inadequate staff and high caseloads with limited basic supplies hindered their clinical practice. Participants articulated that they concentrated on active solutions to save babies during labour, such as vigilant foetal rate heart monitoring and partogram. Further, reduction and prevention of very early neonatal death is a complex problem requiring multidisciplinary teams and woman-centred care approaches to address issues contributing to the health of mothers and their new-borns. Conclusions: Midwives' narratives highlighted ways of coping with grief and deep sadness, through prayer, and further education of both mothers and fellow colleagues to achieve better antenatal and intrapartum care and outcomes. This study gave midwives an opportunity for their voices to be heard and to generate solutions or insights that can be shared with colleagues in similar low-resource settings.
Identifier
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<a href="http://doi.org/10.3390/children10040705" target="_blank" rel="noreferrer noopener">10.3390/children10040705</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
Abeysekera R
Becker C
Becker J
Children
Gray M
Midwives
Moir J
Neonatal Death
Oprescu F
Shimwela M
-
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/10.1177/02692163221136896" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163221136896</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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Serious health-related suffering experienced by children with disability and their families living in Bangladesh: A scoping review
Publisher
An entity responsible for making the resource available
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
Humans; Child; Bangladesh; Disabled Children; Palliative Care/mt [Methods]; Hospice Care; Hospices; Only Child; Disabled Children
Creator
An entity primarily responsible for making the resource
Smith SE; Chowdhury MK; Doherty M; Morgan DD
Description
An account of the resource
BACKGROUND: In 2020, the International Association for Hospice and Palliative Care redefined palliative care to incorporate the concept of serious health-related suffering. An estimated 21 million children globally live with conditions which would benefit from a palliative approach to relieve suffering. Bangladesh is a lower-middle income country with isolated provision of palliative care., AIM: To synthesise existing evidence describing serious health-related suffering of children with disability and their families living in Bangladesh and the intersection between this suffering, palliative care and rehabilitation., DESIGN: Scoping review methodology., DATA SOURCES: A search strategy related to serious health-related suffering and childhood disability was applied to online databases and grey literature. English language studies (1990-2021) were included. Papers pertaining to serious health-related suffering of typically developing children and those over eighteen years were excluded. Data which addressed the three domains of serious health-related suffering (physical, social and emotional/spiritual) were extracted. Palliative care interventions were assessed with a pre-existing checklist., RESULTS: Forty-six studies were included, representing ten different methodologies. Sample sizes ranged from 11 to 2582 participants, with 87% of studies including children with cerebral palsy. Serious health-related suffering was described in 100% of the studies, only 14 of the studies described specific interventions to mitigate suffering. Convergence between palliative care and rehabilitation approaches was evident., CONCLUSION: Findings document the extensive nature and burden of serious childhood health-related suffering that may be remediated by a palliative approach. They highlight the urgent need to prioritise service development and research in this area.
Identifier
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<a href="http://doi.org/10.1177/02692163221136896" target="_blank" rel="noreferrer noopener">10.1177/02692163221136896</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
Bangladesh
Child
Chowdhury MK
Disabled Children
Doherty M
Hospice Care
Hospices
Humans
Morgan DD
Only Child
Palliative Care/mt [methods]
Palliative Medicine
Smith SE
-
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/10.1080/24694193.2022.2085821" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/24694193.2022.2085821</a>
Dublin Core
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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
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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
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<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
-
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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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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>
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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
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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
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
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<a href="http://doi.org/10.1186/s12904-023-01195-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01195-4</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
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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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>
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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
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
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Title
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1136/bmjopen-2022-066620" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjopen-2022-066620</a>
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Doctors' experiences of referring and admitting patients to the intensive care unit: a qualitative study of doctors' practices at two tertiary hospitals in Malawi
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BMJ Open
Date
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2023
Subject
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Humans; Critical Care; Tertiary Care Centers; Intensive Care Units; Intensive Care Units; Hospitalization; Malawi; Paediatric intensive & critical care; Adult intensive & critical care; Quality in health care
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Gundo R; Kayambankadzanja RK; Chipeta D; Gundo B; Chikumbanje SS; Baker T
Description
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OBJECTIVE: To explore doctors' experiences of referring and admitting patients to the intensive care unit (ICU) at two tertiary hospitals in Malawi. DESIGN: This was a qualitative study that used face-to-face interviews. The interviews were audiotaped and transcribed verbatim into English. The data were analysed manually through conventional content analysis. SETTING: Two public tertiary hospitals in the central and southern regions of Malawi. Interviews were conducted from January to June 2021. PARTICIPANTS: Sixteen doctors who were involved in the referral and admission of patients to the ICU. RESULTS: Four themes were identified namely, lack of clear admission criteria, ICU admission requires a complex chain of consultations, shortage of ICU resources, and lack of an ethical and legal framework for discontinuing treatment of critically ill patients who were too sick to benefit from ICU. CONCLUSION: Despite the acute disease burden and increased demand for ICU care, the two hospitals lack clear processes for referring and admitting patients to the ICU. Given the limited bed space in ICUs, hospitals in low-income countries, including Malawi, need to improve or develop admission criteria, severity scoring systems, ongoing professional development activities, and legislation for discontinuing intensive care treatments and end-of-life care.
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<a href="http://doi.org/10.1136/bmjopen-2022-066620" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2022-066620</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
Adult intensive & critical care
Baker T
Bmj Open
Chikumbanje SS
Chipeta D
Critical Care
Gundo B
Gundo R
Hospitalization
Humans
Intensive Care Units
Kayambankadzanja RK
Malawi
Paediatric intensive & critical care
Quality In Health Care
Tertiary Care Centers
-
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1177/10499091231180819" 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
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American Journal of Hospice and Palliative Care
Date
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2023
Subject
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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
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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
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<a href="http://doi.org/10.1177/10499091231180819" target="_blank" rel="noreferrer noopener">10.1177/10499091231180819</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
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
-
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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/10.1017/s1049023x23002960" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/s1049023x23002960</a>
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“We decide according to the protocol”: Humanitarian Healthcare Workers’ Moral Experiences of Palliative Care-Related Decision-Making in Cox’s Bazar, Bangladesh
Publisher
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Prehospital & Disaster Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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pediatrics; neonatal health; palliative care
Creator
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Yantzi R; Hadiuzzaman M; Gupta PS; Lamrous A; Richardson K; Pringle J; Schwartz L; Hossain P; Kizito D; Burza S
Description
An account of the resource
Introduction: 919,000 Rohingya refugees live in overcrowded camps in Cox’s Bazar, Bangladesh after fleeing violence in Myanmar. The Médecins Sans Frontières (MSF) Goyalmara Hospital offers the highest level of pediatric and neonatal care serving the Rohingya refugees and palliative care is gradually being integrated due to high mortality and medical complexity of patients. The purpose of this study was to understand the moral experiences of staff involved in providing palliative care to inform program implementation at Goyalmara Hospital and in other humanitarian contexts. Method: This focused ethnography was conducted between March-August 2021 at Goyalmara Hospital. Data collection involved participant-observation, individual interviews (22), focus group discussions (5), and analysis of protocols and other documents. Interviews and focus groups were audio-recorded, translated, and transcribed. A coding scheme was developed, and data coded using NVivo 11. Results: A key finding of this study was the important yet contested role of clinical guidelines and policies in palliative care related decision-making which was shaped by the authority and impermanent presence of international staff in the project. Staff saw clinical guidelines as a valuable resource that supported a consistent approach to care over time, and some locally hired staff used clinical guidelines as a tool to support their point of view during care planning discussions with international staff. Others felt that palliative care guidelines and other policies were inappropriately or rigidly applied, particularly surrounding decisions to refer (or not refer) patients to a higher level of care, or to discontinue certain medical treatments at end of life. Conclusion: MSF staff experienced tension between the need for clarity and consistency, and the need to tailor guidelines to the context, patient, and family. Open discussion of staff concerns may alleviate moral distress and alert teams to areas where advocacy, staff psycho-social support, training, or clinical mentoring are needed.
Identifier
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<a href="http://doi.org/10.1017/s1049023x23002960" target="_blank" rel="noreferrer noopener">10.1017/s1049023x23002960</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
Burza S
Gupta PS
Hadiuzzaman M
Hossain P
Kizito D
Lamrous A
neonatal health
Palliative Care
Pediatrics
Prehospital & Disaster Medicine
Pringle J
Richardson K
Schwartz L
Yantzi R
-
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/10.3389/fped.2023.1217209" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fped.2023.1217209</a>
Dublin Core
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Title
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Perinatal palliative care in sub-Saharan Africa: recommendations for practice, future research, and guideline development
Publisher
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Frontiers in Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Palliative Care; neonatal intensive care; perinatal palliative care; neonatal end-of-life care; Africa South of the Sahara; low-middle-income-countries; newborn bereavement; sub-saharan Africa
Creator
An entity primarily responsible for making the resource
Abayneh M; Rent S; Ubuane PO; Carter BS; Deribessa SJ; Kassa BB; Tekleab AM; Kukora SK
Description
An account of the resource
Worldwide, sub-Saharan Africa has the highest burden of global neonatal mortality (43%) and neonatal mortality rate (NMR): 27 deaths per 1,000 live births. The WHO recognizes palliative care (PC) as an integral, yet underutilized, component of perinatal care for pregnancies at risk of stillbirth or early neonatal death, and for neonates with severe prematurity, birth trauma or congenital anomalies. Despite bearing a disproportionate burden of neonatal mortality, many strategies to care for dying newborns and support their families employed in high-income countries (HICs) are not available in low-and-middle-income countries (LMICs). Many institutions and professional societies in LMICs lack guidelines or recommendations to standardize care, and existing guidelines may have limited adherence due to lack of space, equipment, supplies, trained professionals, and high patient load. In this narrative review, we compare perinatal/neonatal PC in HICs and LMICs in sub-Saharan Africa to identify key areas for future, research-informed, interventions that might be tailored to the local sociocultural contexts and propose actionable recommendations for these resource-deprived environments that may support clinical care and inform future professional guideline development.
Identifier
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<a href="http://doi.org/10.3389/fped.2023.1217209" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1217209</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
Abayneh M
Africa South of the Sahara
Carter BS
Deribessa SJ
Frontiers in Pediatrics
Kassa BB
Kukora SK
low-middle-income-countries
neonatal end-of-life care
neonatal intensive care
newborn bereavement
Palliative Care
Perinatal Palliative Care
Rent S
Sub-Saharan Africa
Tekleab AM
Ubuane PO
-
Dublin Core
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Title
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163231172891</a>
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Title
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Exploring the Palliative Care Needs of Children in Refugee Settlements in Uganda
Publisher
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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
The topic of the resource
Child; child; Palliative Care; adult; human; chronic disease; palliative therapy; needs assessment; data analysis; Only Child; distress syndrome; conference abstract; refugee; Uganda; Uganda; thermometer; mentor; refugee camp
Creator
An entity primarily responsible for making the resource
Downing J; Santiago T; Opia V; Oziti G; Namukwaya E; Nabirye L; Maku S; Nalutaaya F; Bagasha P; Smith C; Ikong H; Venkatesh C; Howarth K; McGeough K; Grant L; Leng M
Description
An account of the resource
Background/aims: Palliative care for children should be provided wherever the child is who needs care, whether that be at home, at school, in a clinic, in a hospital, in a hospice, as well as including in humanitarian settings. It should be provided by all health providers and not just by palliative care specialists. Since 2016 the importance of palliative care within humanitarian crises settings has been recognised, with palliative care being included in the SPHERE handbook in 2018 and the ongoing development of guidelines for paediatric palliative care in organisations such as Medicines San Frontieres (MSF) and the publication of a handbook by the World Health Organization. However, there has been minimal data with regards to the need for palliative care provision in humanitarian settings. Work in several countries is ongoing to understand the needs of people - both adults and children, living with chronic diseases amongst refugee communities. In Uganda there are approximately 1.45 million refugees, 59% of whom are children. This paper will report on some of the work being undertaken in Uganda to explore the palliative care needs of children in refugee settlements. <br/>Method(s): Mixed methods study in refugee populations including rapid participatory appraisal, training and mentorship and needs assessment undertaken between 2018 and 2022, in host and refugee populations in Obongi and Adjumani Districts, Northern Uganda. Tools used include the children's palliative outcome scale, the distress thermometer and ECOG. Ethical approval was gained from UNCST and children with unmet clinical needs were signposted for support. <br/>Result(s): The results of several studies undertaken in Northern Uganda will be reported on. Initial data suggests high levels of need for children's palliative care, with significant unmet PC need and high levels of distress amongst children and their families. Data analysis is ongoing and initial results will be shared in this presentation. <br/>Conclusion(s): It is essential that we address the palliative care needs of children living in humanitarian settings. Yet little is known of the magnitude of the need for children's palliative care in such settings, nor the burden of unmet need. Studies such as this one will contribute to the evidence base for providing palliative care for children in humanitarian settings beyond that of anecdotal accounts and contribute towards recommendations for the provision of children's palliative care in humanitarian settings.
Identifier
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<a href="http://doi.org/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener">10.1177/02692163231172891</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
Adult
Bagasha P
Child
Chronic Disease
conference abstract
Data Analysis
Distress Syndrome
Downing J
Grant L
Howarth K
Human
Ikong H
Leng M
Maku S
McGeough K
mentor
Nabirye L
Nalutaaya F
Namukwaya E
Needs Assessment
Only Child
Opia V
Oziti G
Palliative Care
Palliative Medicine
Palliative Therapy
refugee
refugee camp
Santiago T
Smith C
Thermometer
uganda
Venkatesh C
-
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/10.1016/j.jpainsymman.2023.06.032" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.06.032</a>
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Title
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Pediatric Palliative Care Program Implementation in LMICs: A Systematic Review using SWOT Analysis
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
palliative care; Palliative Care; Pediatric; implementation; low- and middle-income countries (LMIC); systematic review SWOT analysis
Creator
An entity primarily responsible for making the resource
Kenneson SA; Hughes-Visentin A; Wrigley J; Gujral P; Lodhi S; Phadke S; Rayala S; Gentica X; Malipeddi D; Sarvode S; Kaye EC; Doherty M
Description
An account of the resource
CONTEXT: Of the estimated 21 million children world-wide who need access to pediatric palliative care (PPC), about 97% currently reside in low-and middle-income countries (LMIC). Access to PPC programs in LMIC are limited, and successful strategies and barriers to program implementation remain understudied. OBJECTIVES: We conducted a systematic review to characterize the strengths, weaknesses, opportunities, and threats (SWOT) of PPC program implementation in LMIC. METHODS: Using PRISMA guidelines, we searched key databases from inception to April 2022 and reviewed references manually. Eligible abstracts and articles included content related to composition, role, function, purpose, development, or implementation of PPC programs in LMIC. RESULTS: From 7,846 titles and abstracts and 229 full-text articles, we identified 62 eligible abstracts and articles; 16 articles were added following manual searching of references, resulting in 78 items (28 abstracts, 50 articles). A total of 82 unique programs were described, including nine from low-income, 27 from lower-middle income, and 44 from upper-middle income countries. Common strengths included presence of multidisciplinary teams and psychosocial care. Common weaknesses included lack of PPC training and research infrastructure. Common opportunities involved collaboration between institutions, government support, and growth of PPC education. Common threats comprised limited access to PPC services, medications, and other resources. CONCLUSION: PPC programs are being successfully implemented in resource limited settings. Hospice and palliative medicine organizations should sponsor PPC clinicians to describe and disseminate more detailed descriptions of successes and challenges with program implementation to help build and grow further PPC initiatives in LMICs.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2023.06.032" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.06.032</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
Doherty M
Gentica X
Gujral P
Hughes-Visentin A
Implementation
Journal of Pain and Symptom Management
Kaye EC
Kenneson SA
Lodhi S
low- and middle-income countries (LMIC)
Malipeddi D
Palliative Care
Pediatric
Phadke S
Rayala S
Sarvode S
systematic review SWOT analysis
Wrigley J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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/10.1371/journal.pone.0288938" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1371/journal.pone.0288938</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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Doing our best and doing no harm: A focused ethnography of staff moral experiences of providing palliative care at a Médecins Sans Frontières pediatric hospital in Cox's Bazar, Bangladesh
Publisher
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PLoS One
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; Hospitals Pediatric; Palliative Care; Infant; Bangladesh; Palliative Care; Morals; Hospitals Pediatric; Anthropology Cultural
Creator
An entity primarily responsible for making the resource
Yantzi R; Hadiuzzaman M; Sen Gupta PK; Lamrous A; Richardson K; Pringle J; Schwartz L; Hossain P; Kizito D; Burza S
Description
An account of the resource
INTRODUCTION: The Médecins Sans Frontières (MSF) Goyalmara Hospital in Cox's Bazar, Bangladesh is a referral centre offering the highest level of care available in the Rohingya camps for pediatrics and neonatology. Efforts are underway to integrate pediatric palliative care due to high mortality and medical complexity of patients, yet little is known about the experiences of staff delivering palliative and end-of-life care. The purpose of this study was to understand the moral experiences of MSF staff to inform program planning and implementation. METHODS: This focused ethnography was conducted between March-August 2021 at Goyalmara Hospital. Data collection involved participant-observation, individual interviews (22), focus group discussions (5), and analysis of documents including MSF clinical guidelines, admission and referral criteria, reports, and training materials. Data analysis followed a modified version of the Qualitative Analysis Guide of Leuven and data were coded using NVivo software. RESULTS: The prevailing understanding of pediatric palliative care among national and international staff was care that prioritized comfort for infants and children who were not expected to survive. Staff's views were informed by their sense of obligation to do no harm, to do their best on behalf of their patients, and religious beliefs about God's role in determining the child's outcome. The authority of doctors, international staff, as well as protocols and guidelines shaped palliative care decision-making. Staff saw clinical guidelines as valuable resources that supported a consistent approach to care over time, while others were concerned that palliative care guidelines were rigidly applied. CONCLUSION: When integrating palliative care into humanitarian programs, it is important to emphasize the active role of palliative care in reducing suffering. Advocacy for access to the highest level of care possible should continue alongside palliative care integration. While palliative care guidelines are valuable, it is essential to encourage open discussion of staff concerns and adapt care plans based on the family's needs and preferences.
Identifier
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<a href="http://doi.org/10.1371/journal.pone.0288938" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0288938</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
Anthropology Cultural
Bangladesh
Burza S
Child
Hadiuzzaman M
Hospitals Pediatric
Hossain P
Humans
Infant
Kizito D
Lamrous A
Morals
Palliative Care
PLoS One
Pringle J
Richardson K
Schwartz L
Sen Gupta PK
Yantzi R
-
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Title
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163231172891</a>
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Pediatric Palliative Care Program Implementation in Low- and Middle-income Countries: A Systematic Review Using a Strengths, Weaknesses, Opportunities and Threats Analysis
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Palliative Medicine
Date
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2023
Subject
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child; Palliative Care; human; palliative therapy; hospice; education; systematic review; human experiment; psychosocial care; conference abstract; multidisciplinary team; middle income country; government; lowest income group; Preferred Reporting Items for Systematic Reviews and Meta-Analyses; resource limited setting
Creator
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Kenneson SA; Hughes-Visentin A; Doherty M; Kaye E; Wrigley J; Gujral P; Lodhi S; Phadke S; Rayala S; Gentica X; Malipeddi D; Sarvode S
Description
An account of the resource
Background/aims: Of the estimated 21 million children world-wide who need access to pediatric palliative care (PPC), about 97% currently reside in low-and middle-income countries (LMIC). Access to PPC programs in LMIC are limited, and successful strategies and barriers to program implementation remain understudied. We conducted a systematic review to characterize the strengths, weaknesses, opportunities, and threats (SWOT) of PPC program implementation in LMIC. <br/>Method(s): Using PRISMA guidelines, we searched key databases from inception to April 2022 and reviewed references manually. Eligible abstracts and articles included content related to composition, role, function, purpose, development, or implementation of PPC programs in LMIC. <br/>Result(s): From 7,846 titles and abstracts and 229 full-text articles, we identified 62 eligible abstracts and articles; 16 articles were added following manual searching of references, resulting in 78 items (28 abstracts, 50 articles). A total of 82 unique programs were described, including 9 from low-income, 27 from lower-middle income, and 44 from upper-middle income countries. Common strengths included presence of multidisciplinary teams and psychosocial care. Common weaknesses included lack of PPC training and research infrastructure. Common opportunities involved collaboration between institutions, government support, and growth of PPC education. Common threats comprised limited access to PPC services, medications, and other resources. (Table Presented) <br/>Conclusion(s): PPC programs are being successfully implemented in resource limited settings. Hospice and palliative medicine organizations should sponsor PPC clinicians to describe and disseminate more detailed descriptions of successes and challenges with program implementation to help build and grow further PPC initiatives in LMICs.
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<a href="http://doi.org/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener">10.1177/02692163231172891</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
Child
conference abstract
Doherty M
Education
Gentica X
government
Gujral P
Hospice
Hughes-Visentin A
Human
Human Experiment
Kaye E
Kenneson SA
Lodhi S
lowest income group
Malipeddi D
middle income country
Multidisciplinary team
Palliative Care
Palliative Medicine
Palliative Therapy
Phadke S
Preferred Reporting Items for Systematic Reviews and Meta-Analyses
psychosocial care
Rayala S
resource limited setting
Sarvode S
Systematic Review
Wrigley J
-
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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/10.15690/vsp.v22i3.2579" target="_blank" rel="noreferrer noopener"> http://doi.org/10.15690/vsp.v22i3.2579</a>
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Title
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Development of Children's Palliative Care in Perm Krai
Publisher
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Current Pediatrics
Date
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2023
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Child; child; Palliative Care; article; human; palliative therapy; Only Child; Russian Federation
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Islamova RI; Minaeva NV; Baranova SP; Berber IE; Dolgomirova NV
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Palliative care as a system is presented in Russia for a little over 10 years. Moreover, such care in every region has its own local-specific scheme and infrastructure. This article presents the results the analysis of palliative care state and availability in Perm Krai, covers its strengths and weaknesses that are crucial for executive decisions-making and for further children's palliative care development.Copyright © 2023 Publishing House of the Union of Pediatricians. All rights reserved.
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<a href="http://doi.org/10.15690/vsp.v22i3.2579" target="_blank" rel="noreferrer noopener">10.15690/vsp.v22i3.2579</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
Article
Baranova SP
Berber IE
Child
Current Pediatrics
Dolgomirova NV
Human
Islamova RI
Minaeva NV
Only Child
Palliative Care
Palliative Therapy
Russian Federation
-
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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.
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2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1055/s-0043-1771407" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1055/s-0043-1771407</a>
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Hospice Care in India-A Pediatrician's Perspective
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South Asian Journal of Cancer
Date
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2023
Subject
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child; Hospice Care; article; human; palliative therapy; Hospices; India; pediatrician; pediatric patient; malignant neoplasm; hospice care; terminally ill patient; India
Creator
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Nair M; Ghoshal A
Description
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Hospice care plays a vital role in providing compassionate and holistic support to terminally ill patients and their families. While hospice care has gained recognition and acceptance globally, its implementation and understanding in the context of pediatric patients in India remain limited. This article aims to explore the pediatrician's perspective on hospice care in India, highlighting the challenges and opportunities for enhancing end-of-life care for children. By understanding the unique needs of pediatric patients and their families, healthcare professionals can contribute to the development and improvement in hospice care services across the country. Copyright © 2023. MedIntel Services Pvt Ltd. All rights reserved.
Identifier
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<a href="http://doi.org/10.1055/s-0043-1771407" target="_blank" rel="noreferrer noopener">10.1055/s-0043-1771407</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
Article
Child
Ghoshal A
Hospice Care
Hospices
Human
India
Malignant Neoplasm
Nair M
Palliative Therapy
pediatric patient
Pediatrician
South Asian Journal of Cancer
terminally Ill Patient
-
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.53" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.53</a>
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An innovative hybrid palliative care fellowship program: empowering pediatricians and enhancing care for children in resource-limited settings
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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child; Canada; Palliative Care; pediatrics; Bangladesh; controlled study; female; human; major clinical study; male; child health; palliative therapy; total quality management; India; pediatrician; skill; clinical examination; conference abstract; Philippines; learning; rotation; leadership; teaching; rigor; career; mentor; running; resource limited setting; Southeast Asia
Creator
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Palat G; Doherty M; Brown S; Shah A
Description
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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.
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<a href="http://doi.org/10.1136/archdischild-2023-rcpch.53" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.53</a>
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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
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
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Title
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2021 Special Edition 1 - Low Resource Settings
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.17635/lancaster/thesis/1424" target="_blank" rel="noreferrer noopener"> http://doi.org/10.17635/lancaster/thesis/1424</a>
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Oncologists' and Haematologists' Views of What Facilitates or Hinders Referral of a Child with Advanced Cancer to Palliative Care in India
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Low resource setting; oncology
Creator
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Salins N; Hughes S; Preston N
Description
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Background and aim: In India, there is high incidence, low cure rates and increased cancer-associated deaths among children with cancer. Although a significant proportion need palliative care (PC), few are referred or referred late. Oncologists and haematologists gatekeep the referral process. This study explored their views on facilitators and barriers for PC referral. Method(s): 22 paediatric oncologists and haematologists from 13 Indian cancer centres were recruited and interviewed. Data were analysed using reflexive thematic analysis. Findings were interpreted using social exchange theory and feedback intervention theory. Result(s): Four themes were generated. 1) Presuppositions about PC where qualifications, experience and being an oncologist conferred power to refer. Oncologists had mixed views about their ability to address PC needs. PC could symbolise therapeutic failure and abandonment, which hindered referral. Trustworthy PC providers had clinical competence, benevolence, knowledge of oncology and paediatrics. 2) Making a PC referral was associated with stigma, navigating illness- related factors, negative family attitudes and limited resources, which impeded PC referral. 3) There was a cost-benefit of PC referral. Symptom management and psychosocial support benefitted the patients. Teamwork, stress reduction and personal growth benefitted the oncologists. Perceived interference and communication by the PC team incongruous with oncologist's views hindered referral. 4) Suggested strategies for developing an integrated model of PC include clear collaboration between oncology and PC, early referral, rebranding PC as symptom control and accessible, knowledgeable and proactive PC team. Conclusion(s): Presuppositions, task and cost-benefit influence referral behaviour. Continuous feedback between PC and cancer providers could foster integration and improve PC management of children.
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<a href="http://doi.org/10.17635/lancaster/thesis/1424" target="_blank" rel="noreferrer noopener">10.17635/lancaster/thesis/1424</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
2021 Special Edition 1 - Low Resource Settings
Hughes S
Low resource setting
Oncology
Palliative Medicine
Preston N
Salins N