1
40
3
-
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
January 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.11.005" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.11.005</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
Palliative Care Needs Assessment for Pediatric Complex Care Providers
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Children with Medical Complexity; Pediatric complex care; Pediatric Palliative Care (PPC)
Creator
An entity primarily responsible for making the resource
DiDomizio PG; Millar Morgan M; Olson L; Murphy N; Moore D
Description
An account of the resource
Context Children with medical complexity (CMC) are often cared for by both complex care and palliative care pediatric teams. No prior research has investigated the relationship between these two disciplines. Objectives The purpose of this article is to investigate challenges that complex care programs face in caring for children with medical complexity (CMC), as well as to explore whether identified challenges could be met through collaboration with pediatric palliative care or additional training for complex care teams. Methods Medical providers who self-identified as providing clinical care to children with medical complexity were asked to complete an online anonymous survey. Subjects were recruited through a Complex Care listerv. Data were analyzed using descriptive statistics. Results 85 subjects completed the survey, of whom 87.1% (n=74) were physicians, and 12.0% (n=11) were nurse practitioners. Subjects reported several challenges in caring for CMC, including symptom management, establishing goals of care, advance care planning, and coordination of care. A majority of subjects reported benefitting from palliative care consultative assistance in each subject area. Most subjects described their relationship with palliative care as a close partnership with frequent overlap. Conclusions The evolving field of pediatric complex care is associated with an array of challenges in caring for CMC. Many of these challenges include competency areas where palliative care providers receive concerted training. Our research suggests greater palliative care involvement in the CMC population can benefit complex care teams and patients, given the expertise palliative providers can bring to the population and the discipline of complex care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2022.11.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.11.005</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).
Pediatric Palliative Care (PPC)
2022
Children With Medical Complexity
DiDomizio PG
January List 2023
Journal of Pain and Symptom Management
Millar Morgan M
Moore D
Murphy N
Olson L
Pediatric complex care
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
January 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January List 2023
URL Address
<a href="http://doi.org/10.1186/s12904-022-01077-1" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-022-01077-1</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Stories of paediatric palliative care: a qualitative study exploring health care professionals' understanding of the concept
Publisher
An entity responsible for making the resource available
BMC Palliat 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
Child; Health Personnel/Psychology; Health Care Professionals; Humans; Life-Limiting Conditions; Life-Threatening Conditions; Palliative Care/methods; Palliative Care; Qualitative Research; Quality of Life; Storytelling; Terminal Care Concept; Thematic Analysis; Pediatric Palliative Care (PPC)
Creator
An entity primarily responsible for making the resource
Riiser K; Holmen H; Winger A; Steindal SA; Castor C; Kvarme LG; Lee A; Lorentsen VB; Misvaer N; Früh EA
Description
An account of the resource
BACKGROUND: By sharing patient stories, health care professionals (HCPs) may communicate their attitudes, values and beliefs about caring and treatment. Previous qualitative research has shown that HCPs usually associate paediatric palliative care (PPC) with death or dying and that they find the concept challenging to understand and difficult to implement. Attending to HCPs' stories may provide a richer account of their understanding of PPC. Thus, the aim of this study was to explore PPC stories narrated by HCPs to gain increased insight into their understanding of what PPC entails. METHODS: This qualitative study collected data from four focus group interviews with 21 HCPs from different units in two Norwegian hospitals. Stories told by the HCPs to illustrate their comprehension of PPC were analysed following thematic analysis procedures. RESULTS: Four themes were identified illustrating what PPC meant to the participants: creating spaces for normality, providing tailored support for the family, careful preparations for saying goodbye and experiencing dilemmas and distress. The stories centred on family care, particularly relating to dramatic or affective situations when the death of a child was imminent. CONCLUSION: The stories reflect how the HCPs view PPC as a specific field of health care that requires particular professional sensitivity, including good communication, collaboration and planning. Thus, the HCPs in this study demonstrated knowledge about the core qualities needed to succeed in PPC. However, similar to previous research, the stories illustrate that how HCPs speak about PPC is strongly associated with end-of-life care, and by that the HCPs do not capture the breadth of the PPC concept. The findings highlight the importance of increasing knowledge about the meaning and content of PPC among HCPs in order to maintain quality of life for all children with life-limiting or life-threatening conditions throughout their illness trajectory.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-022-01077-1" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-01077-1</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Child
Humans
Palliative Care
Pediatric Palliative Care (PPC)
Thematic Analysis
2022
Bmc Palliat Care
Castor C
Früh EA
Health care professionals
Health Personnel/psychology
Holmen H
January List 2023
Kvarme LG
Lee A
Life-limiting Conditions
Life-threatening Conditions
Lorentsen VB
Misvaer N
Palliative Care/methods
Qualitative Research
Quality Of Life
Riiser K
Steindal SA
Storytelling
Terminal Care Concept
Winger 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
January 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January List 2023
URL Address
<a href="http://doi.org/%2010.1016/j.jpainsymman.2022.11.028" target="_blank" rel="noreferrer noopener"> http://doi.org/ 10.1016/j.jpainsymman.2022.11.028</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
Congruent Communication: Addressing culture and care for a seriously ill Rohingya infant
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Pediatric Palliative Care (PPC); Pediatric Ethics; Cross-Cultural Communication; Rohingya; Culture; Rohingya culture; Cross-Cultural Communication; Pediatric Ethics; Pediatric Palliative Care (PPC)
Creator
An entity primarily responsible for making the resource
Treat L; Macauley R
Description
An account of the resource
Pediatric palliative care teams seek to collaboratively promote the quality of life for children with serious medical illness in the context of the values expressed by the patient and family. Especially for infants with high medical fragility, shared decision making can be a complex task that often requires flexibility to respond to the clinical circumstances at hand, as well as contextualization within the family culture. In this paper, we present the case of an infant with a severe congenital brain malformation who was born in an American hospital to a Rohingya-speaking, Burmese family whose care preferences seemed to oscillate between comfort-focused and life-prolonging without clear acknowledgement of the consequences of shifting between treatment plans. Discussion of this case helps to illustrate the cultural factors, ethical challenges, and systems-level issues that can arise for medical teams in seeking to promote patient-centered care that respects family values while also honoring the principle of nonmaleficience.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/%2010.1016/j.jpainsymman.2022.11.028" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2022.11.028</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).
Pediatric Palliative Care (PPC)
2022
Cross-Cultural Communication
Culture
January List 2023
Journal of Pain and Symptom Management
Macauley R
Pediatric Ethics
Rohingya
Rohingya culture
Treat L