1
40
14
-
Dublin Core
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Title
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March 2024 List
Text
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March List 2024
URL Address
<a href="http://doi.org/10.1186/s12913-023-10495-7" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12913-023-10495-7</a>
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The needs of healthcare personnel who provide home-based pediatric palliative care: a mixed method systematic review
Publisher
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BMC Health Services Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
palliative therapy; physician; child; health care delivery; health care personnel; human; organization; Palliative Care
Creator
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Schroder J; Riiser K; Holmen H
Description
An account of the resource
Background: Families with children who have life-limiting or life-threatening illnesses often prefer to receive care at home to maintain a sense of normalcy. However, caring for children at home is different from caring for them in a hospital, and we do not know enough about the needs of healthcare personnel who provide home-based pediatric palliative care. Aim: The aim of this review was to systematically summarize, appraise and synthesize available quantitative, qualitative, and mixed methods research to identify the needs of healthcare personnel in home-based pediatric palliative care. Methods: We used the Joanna Briggs Institute methodology for mixed method systematic reviews and searched systematically in Medline, Embase, PsycINFO, CINAHL, Web of Science, AMED, and the Cochrane Library. Quantitative, qualitative and mixed methods studies from 2012 to 2021 reporting on healthcare personnel's needs, experiences, perspectives, coping strategies, and/or challenges related to home-based pediatric palliative care were eligible for inclusion. The screening was conducted independently in pairs. The quantitative data were transformed into qualitative data and analyzed using thematic synthesis. Results: Overall, 9285 citations were identified, and 21 studies were eligible for review. Most of the studies were qualitative and interview-based. Few studies included healthcare personnel other than doctors and nurses. Three analytical themes were developed: (1) being connected and engaged with the child and family, (2) being part of a dedicated team, and (3) ensuring the quality of home-based pediatric palliative care services. Healthcare personnel strived to deliver high-quality, home-based pediatric palliative care. Establishing a relationship with the child and their parents, collaborating within a committed team, and having sufficient resources were identified as important needs influencing healthcare personnel when providing home-based pediatric palliative care. Conclusion: The findings underscore the importance of building trusting relationships among healthcare personnel, children, and families. It also emphasizes the significance of interdisciplinary collaboration that is effective, along with the presence of enough skilled personnel to ensure high-quality home-based pediatric palliative care. Further research is necessary to include healthcare personnel beyond doctors and nurses, as palliative care requires a team of professionals from various disciplines. Addressing the needs of healthcare personnel can ensure safe and professional palliative care for children at home.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12913-023-10495-7" target="_blank" rel="noreferrer noopener">10.1186/s12913-023-10495-7</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
BMC Health Services Research
Child
Health Care Delivery
Health Care Personnel
Holmen H
Human
March List 2024
Organization
Palliative Care
Palliative Therapy
Physician
Riiser K
Schroder J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1186/s12904-023-01238-w" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01238-w</a>
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Title
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Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative study
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Terminal Care; child; terminal care; article; female; human; male; palliative therapy; clinical article; education; child health care; awareness; qualitative research; funding; human experiment; semi structured interview; thematic analysis; organization; specialization
Creator
An entity primarily responsible for making the resource
Papworth A; Hackett J; Beresford B; Murtagh F; Weatherly H; Hinde S; Bedendo A; Walker G; Noyes J; Oddie S; Vasudevan C; Feltbower RG; Phillips B; Hain R; Subramanian G; Haynes A; Fraser LK
Description
An account of the resource
Background: Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative study aimed to explore regional perspectives of the successes, and challenges to the equitable coordination and delivery of end-of-life care for children in the UK. The study provides an overarching perspective on the challenges of delivering and coordinating end-of-life care for children in the UK, and the impact of these on health professionals and organisations. Previous research has not highlighted the successes in the sector, such as the formal and informal coordination of care between different services and sectors. Method(s): Semi-structured interviews with Chairs of the regional Palliative Care Networks across the UK. Chairs or co-Chairs (n = 19) of 15/16 Networks were interviewed between October-December 2021. Data were analysed using thematic analysis. Result(s): Three main themes were identified: one standalone theme ("Communication during end-of-life care"); and two overarching themes ("Getting end-of-life services and staff in the right place", with two themes: "Access to, and staffing of end-of-life care" and "Inconsistent and insufficient funding for end-of-life care services"; and "Linking up healthcare provision", with three sub-themes: "Coordination successes", "Role of the networks", and "Coordination challenges"). Good end-of-life care was facilitated through collaborative and network approaches to service provision, and effective communication with families. The implementation of 24/7 advice lines and the formalisation of joint-working arrangements were highlighted as a way to address the current challenges in the specialism. Conclusion(s): Findings demonstrate how informal and formal relationships between organisations and individuals, enabled early communication with families, and collaborative working with specialist services. Formalising these could increase knowledge and awareness of end of life care, improve staff confidence, and overall improve professionals' experiences of delivering care, and families' experiences of receiving it. There are considerable positives that come from collaborative working between different organisations and sectors, and care could be improved if these approaches are funded and formalised. There needs to be consistent funding for paediatric palliative care and there is a clear need for education and training to improve staff knowledge and confidence.Copyright © 2023, BioMed Central Ltd., part of Springer Nature.
Identifier
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<a href="http://doi.org/10.1186/s12904-023-01238-w" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01238-w</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Article
Awareness
Bedendo A
Beresford B
BMC Palliative Care
Child
Child Health Care
Clinical Article
Education
Feltbower RG
Female
Fraser LK
Funding
Hackett J
Hain R
Haynes A
Hinde S
Human
Human Experiment
Male
Murtagh F
Noyes J
October List 2040
Oddie S
Organization
Palliative Therapy
Papworth A
Phillips B
Qualitative Research
Semi Structured Interview
Specialization
Subramanian G
Terminal Care
Thematic Analysis
Vasudevan C
Walker G
Weatherly H
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1186/s12904-023-01194-5" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01194-5</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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Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Palliative Care; adult; article; controlled study; female; human; male; palliative therapy; pediatrics; clinical article; qualitative research; skill; health care system; thematic analysis; decision making; multidisciplinary team; semi structured interview; organization; patient care team
Creator
An entity primarily responsible for making the resource
Rico-Mena P; Gueita-Rodriguez J; Martino-Alba R; Chocarro-Gonzalez L; Sanz-Esteban I; Palacios-Cena D
Description
An account of the resource
Purpose: To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents. Methods: A qualitative descriptive case study was conducted. Purposeful sampling took place within a specialized pediatric palliative care Unit in Madrid (Spain), located at the Niño Jesus Hospital. The study participants included a specialized pediatric palliative care team from Madrid's pediatric palliative care program, other professional teams involved in interdisciplinary care and parents of children under pediatric palliative care. Data were collected via semi-structured interviews, focus groups and researchers' field notes. A thematic analysis was performed. Results: This study included 28 participants (20 women, 8 men), of whom 18 were professionals who belonged to the pediatric palliative care interdisciplinary team, 4 professionals were from other units that collaborated with the pediatric palliative care, and 6 were parents (5 women, 1 man). The mean age of the pediatric palliative care members was 38.2 years (SD ± 7.9), that of the collaborating professionals was 40.5 (SD ± 6.8), and that of the parents was 44.2 (SD ± 5.4). Two main themes emerged: a) Pediatric palliative care has a distinct identity, associated with life. It represents the provision of special care in highly complex children, in the context of the home, far from the hospital environment; b) The team is key: its interdisciplinary organization provides a more comprehensive view of the child and their family, fosters communication among professionals, and improves coordination with other services involved in the care of children. The mindset shift experienced by ID-PPC professionals towards a palliative approach makes them more sensitive to the needs of their patients and leads them to develop specific skills in areas such as communication, decision-making, and adaptability that were identified as differentiating aspects of pediatric palliative care. Conclusions: Describing pediatric palliative care from the professional and parental perspective helps to establish realistic and comprehensive goals for the care of children and their parents. The findings of this study may help with the establishment of a pediatric palliative care team, as a necessary organizational change in a health care system that cares for children with complex and life-threatening conditions. Promoting training in pediatric palliative care, prioritizing more horizontal organizations, providing tools and spaces for coordination and communication between professionals from different services, together with the creation of a position of case coordinator in the care process of children could enhance the understanding of pediatric palliative care services.
Identifier
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<a href="http://doi.org/10.1186/s12904-023-01194-5" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01194-5</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adult
Article
August List 2046
BMC Palliative Care
Child
Chocarro-González L
Clinical Article
Controlled Study
Decision Making
Female
Gueita-Rodriguez J
Health Care System
Human
Male
Martino-Alba R
Multidisciplinary team
Organization
Palacios-Cena D
Palliative Care
Palliative Therapy
Patient Care Team
Pediatrics
Qualitative Research
Rico-Mena P
Sanz-Esteban I
Semi Structured Interview
Skill
Thematic Analysis
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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September 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2022 List
URL Address
<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/02692163221093145</a>
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Title
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Inequalities in Access to Bereavement Support Before and During COVID-19: Findings from Voluntary and Community Sector Bereavement Services in the UK
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
bereavement; child; hospice; human; female; male; attention; bereavement; palliative; organization; gender; welfare; therapy; support; study; pandemic; disease; 2019; clinical; population; abstract; conference; controlled; major; social; and; ethnic; coronavirus; disadvantaged; group; media; minority; sexual
Creator
An entity primarily responsible for making the resource
Selman L; Sutton E; Medeiros Mirra R; Goss S; Longo M; Seddon K; Penny A; Wakefield D; Nelson A; Byrne A; Harrop E
Description
An account of the resource
Background/aims: The COVID-19 pandemic has resulted in global mass bereavement; in the UK alone there have been 140,000 deaths to date, with a disproportionate impact on Black, Asian or minoritized ethnic (BME) communities. Voluntary and community sector (VCS) bereavement services including hospices play an important role in bereavement support. We aimed to determine services' perspectives on access to their support.
Identifier
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<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">10.1177/02692163221093145</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
abstract
and
Attention
Bereavement
Byrne A
Child
Clinical
Conference
controlled
coronavirus
disadvantaged
Disease
ethnic
Female
Gender
Goss S
group
Harrop E
Hospice
Human
Longo M
Major
Male
Medeiros Mirra R
media
minority
Nelson A
Organization
Palliative
Palliative Medicine
Pandemic
Penny A
Population
Seddon K
Selman L
September 2022 List
Social
study
Support
Sutton E
Therapy
Wakefield D
welfare
-
Dublin Core
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Title
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2020 Oncology List
Text
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Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.010" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.08.010</a>
Dublin Core
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Title
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Seven Types of Uncertainty When Clinicians Care for Pediatric Patients With Advanced Cancer
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
2020
Subject
The topic of the resource
child; human; palliative therapy; controlled study; article; pediatrics; childhood cancer; patient referral; Uncertainty; qualitative analysis; cancer patient; cancer prognosis; oncologist; pediatric patient; semi structured interview; organization; care behavior; Advanced cancer
Creator
An entity primarily responsible for making the resource
Hill D L; Walter J K; Szymczak J E; DiDomenico C; Parikh S; Feudtner C
Description
An account of the resource
Context: Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative referral intervention for oncology teams we explored how uncertainty might influence palliative care referrals.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.010" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.08.010</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).
2020
Advanced Cancer
Article
Cancer Patient
Cancer Prognosis
care behavior
Child
Childhood Cancer
Controlled Study
DiDomenico C
Feudtner C
Hill D L
Human
Journal of Pain and Symptom Management
Oncologist
Oncology 2020 List
Organization
Palliative Therapy
Parikh S
Patient Referral
pediatric patient
Pediatrics
Qualitative Analysis
Semi Structured Interview
Szymczak J E
Uncertainty
Walter J K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/144/2_MeetingAbstract/00.11">https://pediatrics.aappublications.org/content/144/2_MeetingAbstract/00.11</a>
Dublin Core
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Title
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Pediatric palliative podcasting as a tool to reach families
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
child; clinical article; conference abstract; female; follow up; human; male; organization; palliative therapy; season; social media; total quality management; touch
Creator
An entity primarily responsible for making the resource
Moore D; Bills O
Description
An account of the resource
Podcasts have grown in popularity over the last several years. Pediatric Palliative Care services can use this medium of communication to reach families more effectively. Podcast use is determined by the schedule of parents rather than providers. This abstract will describe the process of creating a podcast, strategies for creating and releasing content, and how to follow up content once released. The past 10 years have seen rapid advancements in the affordability and quality of recording options. Many institutions have seen the value of media outreach directly to patients and are working to lower the obstacles to engaging through this medium. Our team looked into both the physical process of recording and the various ways to disseminate content. After evaluating options, we choose to record using a combination of personally-owned, portable recording equipment and a recently opened institutional facility equipped with recording tools. Looking at hosting services used by various organizations, we chose to follow the pattern of the Center for the Advancement of Palliative Care (CAPC) which uses a free, widely available site. Using this tool, we are able to post links to podcasts in the various social media formats used by our team. Our team chose to start with 5 episodes, which would be released all at once to start a ?season? of out podcast. We chose topics for our discussion based on our target audience, parents of children with Palliative Care needs, and the teams experience with parental questions and issues. Topics focused on fundamentals of Palliative Care and common questions parents ask such as, "How do I advocate for my child while in the hospital"?. The 2 hosts plan an outline for each of these discussions and then record an episode trying to touch on major points. The hosts create outlines detailed enough to be useful while preserving a sense of spontaneity. After the episode is recorded it is edited for length and flow. Our goal for the episodes was roughly 20-30 minutes. This is based on experts in the field who consider this a ?drive-time? length that listeners can commit to. Once podcasts are released into the community, we follow basic analytics including the number of listens, percent of listeners who complete the episode, location of listeners, and time of day episodes are played. This helps give us an idea of what is going well, what should be continued, and what should change. Feedback is also elicited from listeners for improvement and topics for future episodes. We feel that podcasts are an effective tool to reach families and will continue our program. Our future plans include more rigorous quality improvement methodology and finding opportunities for guest hosts, including parents.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Bills O
Child
Clinical Article
conference abstract
Female
Follow Up
Human
Male
March 2020 List
Moore D
Organization
Palliative Therapy
Pediatrics
season
social media
Total Quality Management
touch
-
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
2019 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1016/j.ijrobp.2019.06.1497" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ijrobp.2019.06.1497</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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Vulnerable Populations Receiving Palliative Radiation in a Children's Hospital: Reporting on the Underreported
Publisher
An entity responsible for making the resource available
International Journal of Radiation Oncology Biology Physics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adult; anesthesia; Asia; cancer radiotherapy; central nervous system tumor; child; conference abstract; controlled study; death; electronic medical record; employer; female; follow up; fraud; housing; human; immigration; lowest income group; major clinical study; male; medical record review; mental stress; neuroblastoma; organization; pain; poverty; race; radiation oncologist; radiotherapy; retrospective study; rhabdomyosarcoma; school child; South and Central America; terminal care; vulnerable population; young adult
Creator
An entity primarily responsible for making the resource
Wong K; Hwang L; Liu K X; Lee H J; Olch A J
Description
An account of the resource
Purpose/Objective(s): Few studies have examined the use of palliative radiation therapy (RT) in the pediatric population. This single institution study is one of the largest series reported of palliative RT practice patterns prior to and within the last month of life with a focus on vulnerable and underserved pediatric patients. Materials/Methods: A retrospective chart review of patients treated from 2008-2017 identified patients treated with radiotherapy with palliative intent. Demographic, diagnosis, and treatment parameters were collected from the electronic medical records. Vital status was recorded at date of death or last follow-up. Vulnerable patients were defined as belonging to a minority, adolescent and young adult (AYA), special needs, or low income population. Result(s): Of the 1092 patients treated with RT, 108 were identified as having received 227 treatments with palliative intent. Forty-five patients (42%) were female and 63 (58%) were male. The median age at the time of the first course of radiation was 11 years (range 0-25). Central nervous system (CNS) disturbance was the most common indication (n=50, 46%) followed by pain (n=44, 41%). Top primary diagnoses included CNS neoplasm (n=30, 37%), neuroblastoma (n=20, 19%), and rhabdomyosarcoma or other sarcoma (n=11, 10%). Forty-four percent were treated with anesthesia for at least one course of radiation. The median time from last course of RT to date of last follow-up was 3 months (range 0-105), and 25 patients (23%) received radiation in the last month of life. Eighty-two (76%) patients were deceased at time of review. The vulnerable constituted the overwhelming majority of the 108, only 13 (11.5%) were not. Patients were classified in the following individual categories: minority (n=90, 83.3%), AYA (n=34, 30%), special needs (n=10, 8.8%), or low income (n=70, 62%). Eight patients initially came seeking cancer treatment not available in Asia or Latin America. Latinos (n=66, 61%) were numerous and diverse, 12% were mixed race, and 18% had employer-based coverage. The most common vulnerable patients were Latin children from low income families (n=40, 35%). Obstacles to care included the immigration system, limited English, discrimination, cultural barriers, and poverty with job, transportation, and housing insecurity. Safety net and charitable organizations had scarce resources and rules intended to reduce fraud and abuse further limited access. Parents reported these challenges amplified the great psychological distress felt after the death of a child. Conclusion(s): This is the first report to document the vulnerable pediatric and AYA population receiving palliative radiation therapy at a large urban hospital. Almost a quarter of patients received treatment in the last month of life. Most commonly, a vulnerable child was Latinx from a low income family. Further investigation is needed to guide radiation oncologists on the delivery of optimal end-of-life care and address barriers to care in this population. Copyright © 2019
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ijrobp.2019.06.1497" target="_blank" rel="noreferrer noopener">10.1016/j.ijrobp.2019.06.1497</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Adult
Anesthesia
Asia
cancer radiotherapy
Central Nervous System Tumor
Child
conference abstract
Controlled Study
Death
electronic medical record
employer
Female
Follow Up
fraud
housing
Human
Hwang L
immigration
International Journal Of Radiation Oncology Biology Physics
Lee H J
Liu K X
lowest income group
Major Clinical Study
Male
Medical Record Review
Mental Stress
Neuroblastoma
Olch A J
Oncology 2019 List
Organization
Pain
Poverty
race
radiation oncologist
Radiotherapy
Retrospective Study
Rhabdomyosarcoma
School Child
South and Central America
Terminal Care
vulnerable population
Wong K
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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2019 Developing World List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Developing World 2019 List
URL Address
<a href="http://doi.org/10.1200/jgo.18.36900" target="_blank" rel="noreferrer noopener">http://doi.org/10.1200/jgo.18.36900</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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The integration of palliative care in Dr Congo "a Model of Sustainability": A field study
Publisher
An entity responsible for making the resource available
Journal of Global Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
analgesia; capacity building; caregiver; child; conference abstract; Congo; Congolese (Kinshasa); doctor nurse relation; female; field study; home care; human; leadership; major clinical study; male; organization; palliative therapy; practice guideline; primary health care; sensitization; training; Uganda; volunteer
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Mubeneshayi Kananga A
Description
An account of the resource
Background and context: In DR Congo, many cancer patients in the terminal phase of their condition have minimal access to palliative care. There is a combined effect of poverty, the deteriorationofthe health system and the absenceof a well-defined national policyonpalliative care. Patients are for the most part abandoned to the care of inexperienced family members. Driven by the fact that the number of palliative patients has been increasing steadily over the past five years, the Palliafamilli association and its partners have taken leadership in the fight for palliative care. The major issue that blocks palliative care in RD Congo is the lack of knowledge about palliative care both in the population and even in health professionals. Most patients are treated at home with strong family involvement in many aspects of care. Aim(s): To promote good health practices at the community level and equip them with the knowledge and means to prevent their health problems, with a focus on palliative care and to contribute to the implementation of the Strategy for Strengthening the Health SystemofDRCongo by facilitating a program of access to palliative care for the entire Congolese population. Strategy/Tactics: During the last7years,wehave organized conferences, congresses, various training sessions on pain management, sensitization activities, capacity building courses and advocacy activities within the Ministry of Health for national palliative care guidelines. Program/Policy process: The organization of two International Congress of Palliative Care in Kinshasa in April 2013 (550 participants) and September 2015 (700 participants) Training of 3 health professionals on the palliative approach in Uganda (2013) Participation at the Second Francophone Palliative Care Congress in Montreal 2013 A palliative care training course at the University of Kinshasa in 2015 (115 participants) The organization of the International Colloquium of Pediatric Palliative Care in Kinshasa in 2015 Participation in the 4th International Francophone Congress of Palliative Care in Geneva (2017) Participating in the drafting of national guidelines for palliative care within the Ministry of Health (2017) Capacity building for two members of PalliaFamilli thanks to the scholarship offered by the UICC. What was learned: In DR Congo, palliative care and pain relief require a cross-cutting approach, as resources are limited, many people are in need of care, and there are few nurses and doctors empowered to provide care. An effective approach is to involve community or volunteer caregivers supervised by health professionals, and Palliafamilli is successful due in its mul-tidisciplinary and multisectoral approach, with adaptation to cultural, social and economic specificities and its integration with existing health systems, focusing on primary health care and community and home care.
Identifier
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<a href="http://doi.org/10.1200/jgo.18.36900" target="_blank" rel="noreferrer noopener">10.1200/jgo.18.36900</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Analgesia
capacity building
Caregiver
Child
conference abstract
Congo
Congolese (Kinshasa)
Developing World 2019 List
doctor nurse relation
Female
field study
Home Care
Human
Journal of Global Oncology
Leadership
Major Clinical Study
Male
Mubeneshayi Kananga A
Organization
Palliative Therapy
Practice Guideline
Primary Health Care
sensitization
Training
uganda
Volunteer
-
Dublin Core
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Title
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2019 Developing World List
Text
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Citation List Month
Developing World 2019 List
URL Address
<a href="http://doi.org/10.1007/s00520-019-04813-1" target="_blank" rel="noreferrer noopener"></a><a href="https://www.capc.org/seminar/poster-sessions/development-of-pediatric-palliative-care-in-uganda/">https://www.capc.org/seminar/poster-sessions/development-of-pediatric-palliative-care-in-uganda/</a>
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Title
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Development of paediatric palliative care in Uganda
Publisher
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Supportive Care in Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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awareness; child; conference abstract; government; human; infant mortality; organization; palliative therapy; postgraduate student; respect; Uganda
Creator
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Igulu Bandese N
Description
An account of the resource
Introduction Issues: Until recently, Paediatric Palliative Care in Uganda was ignored, with less than 5% of patients seen at Hospice Africa Uganda being Paediatric patients. African Palliative Care Association (APCA) and Palliative Care Association of Uganda (PCAU) are strongly advocating for Paediatric Palliative Care (PPC) at the national level. Methods Description: APCA and PCAU has been working closely with International Children's Palliative Care Network (ICPCN) to train health care professionals in Uganda. One major training has been conducted in Uganda since 1998, with over 56 health care professionals being trained and awarded diplomas for the first time in 2017 by Mildmay Uganda. It began as a certificate course in 2009, when Mildmay Uganda was selected to be one of the three organizations in Africa, to establish a Children's Palliative Care Training and Clinical Excellence Center in order to reduce infant mortality rates and give hope to children with life threatening illnesses. Results Lessons learned: These activities have resulted in awareness on the palliative care needs of children. As a result, there are now 5 government hospitals which have started PPC within their respectful institutions, while all government hospitals that have integrated palliative care have been encouraged to include children in their services Conclusions Recommendations: There are still many challenges which need to be addressed. These include integration of PPC in the pre and post graduates curricula for health care professionals; policies for PPC; setting up specific services for children; creating awareness on the need for PPC and demystifying the common myths about PPC.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Awareness
Child
conference abstract
Developing World 2019 List
government
Human
Igulu Bandese N
Infant Mortality
Organization
Palliative Therapy
postgraduate student
Respect
Supportive Care In Cancer
uganda
-
Dublin Core
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Title
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September 2019 List
Text
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Citation List Month
September 2019 List
URL Address
<a href="http://doi.org/10.1007/s11845-019-02054-z" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s11845-019-02054-z</a>
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Title
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A cross-sectional survey of services for young adults with life-limiting conditions making the transition from children's to adult services in Ireland
Publisher
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Irish Journal of Medical Science.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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adult; article; child; female; human; male; human experiment; organization; young adult; questionnaire; Northern Ireland
Creator
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Kerr H; Price J; O'Halloran P
Description
An account of the resource
Background: Increasing numbers of young adults with life-limiting conditions are living into adulthood and consequently making the transition from children's to adult services. A poorly planned transition is associated with adverse outcomes such as non-adherence to treatment and loss to follow-up, together with negative social and emotional outcomes. However, there is little descriptive data on how organisations are currently managing transition.
Identifier
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<a href="http://doi.org/10.1007/s11845-019-02054-z" target="_blank" rel="noreferrer noopener">10.1007/s11845-019-02054-z</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Adult
Article
Child
Female
Human
Human Experiment
Irish Journal of Medical Science.
Kerr H
Male
Northern Ireland
O'Halloran P
Organization
Price J
Questionnaire
September 2019 List
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
June 2018 List
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2018 List
URL Address
<a href="http://doi.org/10.1080/2331205X.2017.1408251" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/2331205X.2017.1408251</a>
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Physician perspectives on end-of-life care and pediatric palliative care for children in the Republic of Korea
Publisher
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Cogent Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
advance care planning; palliative therapy; South Korea; adult; child; conference abstract; death; deterioration; diagnosis; female; financial management; human; interview; life sustaining treatment; male; organization; perception; psychosocial care; questionnaire; tertiary care center
Creator
An entity primarily responsible for making the resource
Kim M S; Kim C H; Yu J; Song IG
Description
An account of the resource
Introduction: Despite significant advances in disease treatment, resources for the pediatric palliative care (PPC) for children with serious illnesses are limited in South Korea. The obstacles to provide optimal PPC include inadequate funding, shortage of specialized professionals, and healthcare system, but the perception of health professionals is also very important. Purpose: This study explored pediatric doctors' perception of end-of-life care and needs on PPC in Korea. Materials and Methods: The study survey was developed based on a review of the palliative care literature and sample physician interview. A questionnaire was sent via online survey and mail to the pediatric doctors with specialized boards working at 43 tertiary hospitals in South Korea. Results: A total of 118 doctors responded to the survey. The median age was 37 years, 53% were female and 76% answered they have own child. Eighty percent responded that, in the previous 2 years, they cared for more than one pediatric patient who died. When asked about appropriate age for terminal state disclosure, 6%, 30%, 42% and 14% answered that pediatric patients should be informed if they are aged over 4, 7, 12, and 15 years old respectively. As for the life-sustaining treatments (LSTs) decision, 24% answered that discussions should be started when a child is diagnosed with incurable diseases, and 48% said advance care planning is needed in a state of constant deterioration even though actual death is not expected. Although only 7% of pediatric doctors had personal desire for use of LSTs when their own disease is incurable and in the deteriorating state, more respondents (29%) showed preferences to LSTs for children in the same situation. More than half of the respondents answered that they are not confident about advance care planning including LST decisions. Most respondents reported experiencing difficulties in PPC areas such as symptom management, ethical problems, and psychosocial support more than once every six months. Pediatric doctors indicated to the barriers to pediatric palliative care implementation as follows: the attitude of parents who prefer aggressive treatment (19%), shortage of PPC professionals and organizations (18%), negative perception on PPC among health professionals (16%), lack of financial support for PPC (12%), inadequate linkage between curative and palliative care (12%), and difficulties to decide when to refer a patient to PPC (10%). Conclusion: Our study showed pediatric doctors in Korea have low preferences to LSTs for children in the terminal state and perceive the needs of PPC. The results will guide the health authorities to design PPC program in Korea.
Identifier
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<a href="http://doi.org/10.1080/2331205X.2017.1408251" target="_blank" rel="noreferrer noopener">10.1080/2331205X.2017.1408251</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).
2017
Adult
Advance Care Planning
Child
Cogent Medicine
conference abstract
Death
Deterioration
Diagnosis
Female
financial management
Human
Interview
June 2018 List
Kim C H
Kim M S
Life Sustaining Treatment
Male
Organization
Palliative Therapy
Perception
psychosocial care
Questionnaire
Song IG
South Korea
tertiary care center
Yu J
-
Dublin Core
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Title
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June 2018 List
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2017.03.024" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2017.03.024</a>
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International Children's Palliative Care Network: A Global Action Network for Children With Life-Limiting Conditions
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
2018
Subject
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palliative therapy; article; child; education; female; human; human experiment; major clinical study; male; organization; social welfare; South Korea
Creator
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Marston J; Boucher S; Downing J
Description
An account of the resource
The International Children's Palliative Care Network (ICPCN) is a global network of individuals and organizations working together to reach the estimated 21 million children with life-limiting conditions and life-threatening illnesses. The drive to establish the ICPCN was born from the recognition of the gaps in service provision for children's palliative care and the need to collaborate, network, and share resources. Established in 2005 during a meeting in Seoul, South Korea, the ICPCN has developed over the years into an established network with a global membership. The history of the organization is described, including some of the key events since its inception. Working in collaboration with others, ICPCN has five key focus areas: Communication; Advocacy; Research; Education; and Strategic development, and is the only international charity working globally for the rights of children with palliative care needs. Activities in these areas are discussed, along with the inter-connection between the five areas. Without the ICPCN, palliative care for children would not have developed as far as it has over the years and the organization is committed to ongoing work in this area until all children requiring palliative care have access to quality services, wherever they live around the world.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2017.03.024" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.03.024</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Article
Boucher S
Child
Downing J
Education
Female
Human
Human Experiment
Journal of Pain and Symptom Management
June 2018 List
Major Clinical Study
Male
Marston J
Organization
Palliative Therapy
Social Welfare
South Korea
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2017 List
URL Address
<a href="http://doi.org/10.1177/1049909115616597" target="_blank" rel="noreferrer">http://doi.org/10.1177/1049909115616597</a>
Notes
<p>Using Smart Source Parsing<br />( (pp Date of Publication: 01 Apr 2017</p>
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Title
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Barriers of Palliative Care in Neonatal Intensive Care Units
Publisher
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The American Journal Of Hospice & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Health Personnel Attitude; Organization And Management; Psychology; Adult; Clinical Competence; Cross Sectional Study; Female; Human; Iran; Islam; Male; Middle Aged; Neonatal Intensive Care Unit; Newborn; Nursing Staff; Organization; Palliative Therapy; Reproducibility; Socioeconomics; Terminal Care
Creator
An entity primarily responsible for making the resource
Azzizadeh Forouzi M; Banazadeh M; Ahmadi JS; Razban F
Description
An account of the resource
OBJECTIVE: Neonatal nurses face numerous barriers in providing end-of-life (EOL) care for neonates and their families. Addressing neonatal nurses' attitudes could provide insight into barriers that impede neonatal palliative care (NPC). This study thus conducted to examine neonatal nurses' attitude toward barriers in providing NPC in Southeast Iran. METHOD: In this cross-sectional study, a translated modified version of Neonatal Palliative Care Attitude Scale was used to examine attitudes of 70 nurses toward barriers of palliative care in 3 neonatal intensive care units in Southeast Iran. RESULTS: Findings indicated that overall 42.63% of nurses were strongly agreed or agreed with the proposed barriers in NPC. Among all categories, the highest and the lowest scores belonged to the categories of "insufficient resources" (3.42 +/- 0.65) and "inappropriate personal and social attitudes" (2.33 +/- 0.48), respectively. Neonatal nurses who had less education and study regarding NPC reported the presence of more barriers to NPC in the categories of "inappropriate organizational culture" and/or "inadequate nursing proficiency." Also, younger nurses had more positive attitudes toward the category of inappropriate organizational culture as being a barrier to provision of NPC (4.62). CONCLUSION: The findings suggest that developing a context-based instrument is required to represent the barrier more precisely. Neonatal palliative care can be improved by establishing a special environment to focus on infants' EOL care. This establishment requires standard palliative care guidelines and adequate NPC-trained nurses.
Identifier
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<a href="http://doi.org/10.1177/1049909115616597" target="_blank" rel="noreferrer">10.1177/1049909115616597</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Adult
Ahmadi JS
Azzizadeh Forouzi M
Banazadeh M
Clinical Competence
Cross Sectional Study
December 2017 List
Female
Health Personnel Attitude
Human
Iran
Islam
Male
Middle Aged
Neonatal Intensive Care Unit
Newborn
Nursing Staff
Organization
Organization And Management
Palliative Therapy
Psychology
Razban F
Reproducibility
Socioeconomics
Terminal Care
The American Journal of Hospice & Palliative Care
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Succession Planning In Children's Palliative Care Services
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Palliative Therapy; Board Of Trustees; Child; Education; Family; Hospice; Human; Human Experiment; Humanism; Humanities; Humans; Intelligence; Leadership; Only Child; Organization; Palliative Care; Retirement; Skill; Staff; Work
Creator
An entity primarily responsible for making the resource
Dickson G
Description
An account of the resource
The children's palliative care sector requires a specific set of knowledge and skills in its workforce. Maintaining high levels of competence and leadership can be challenging if staff move out of the sector, retire or several key people leave. Succession planning can been described as: "any effort designed to ensure the continued effective performance of an organisation by making provision for the development, replacement, and strategic application of key people over time." 1 We produced a guidance document which signposts organisations towards actions to take in building a sustainable workforce. Succession planning done successfully will promote continuity in leadership positions, increased retention and loyalty of staff. The guidance document helps provider organisations identify the risks to the organisation and the challenges facing them in future planning - then suggests some solutions. This Guide was produced with contributions from experts with a national and international perspective, including human resources professionals, higher education and statutory services. It was shared with all leaders in the sector including Chief Executives of Children's Hospice and Palliative Care organisations and put on the Together for Short Lives website The Guide was well received with good feedback from within the sector. Suggestions to activate included: * Gathering workforce intelligence for the whole workforce, including age, job descriptions and skills required * Match competence levels to job roles to identify gaps and strengths * Identify key posts and leadership positions * Explore creative solutions; e.g. partial retirement * Invest in time for Boards of trustees to discuss the plan and identify risks to their organisations These activities will ensure children's palliative care organisations will continue to deliver the best care and support to children and families so they continue to make the most of their precious time together.
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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).
2016
Board Of Trustees
Child
Dickson G
Education
Family
Hospice
Human
Human Experiment
Humanism
Humanities
Humans
Intelligence
Leadership
May 2017 List
Only Child
Organization
Palliative Care
Palliative Medicine
Palliative Therapy
Retirement
Skill
Staff
Work