1
40
26
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Dublin Core
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Title
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February 2024 List
Text
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February List 2024
URL Address
<a href="http://doi.org/10.1177/10497323231201023" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/10497323231201023</a>
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Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study
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Qualitative Health Research
Date
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2023
Subject
The topic of the resource
child; article; controlled study; human; prematurity; palliative therapy; child parent relation; grief; uncertainty; bereavement; ethics; congenital malformation; morality; neonatal intensive care unit; infant; decision making; medical care; narrative
Creator
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Lakhani J; Mack C; Kunyk D; van Manen M
Description
An account of the resource
Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities can turn what was hoped to be a very exciting moment in a family's life into one of despair and grief. There are many infants that not only do not survive but also have a medicalized death necessitating complex decision-making, weighing quality versus duration of life. We can learn from the stories of parents who chose palliative care for their children. In this narrative inquiry study, we elicited bereaved parents' stories and reflections on the lives of their children and the care they received in the NICU. From a narrative ethics perspective, their stories speak to normative aspects of parenting, decision-making, and receiving medical care that affect their moral sense-making of their NICU experiences as well as their longer-term living with the loss of their children. Their stories express the importance of having had meaningful time with their children, maintaining direct and frequent communication, acknowledging uncertainty, and emphasizing compassion as methods of providing support to parents as they navigate their bereavement.
Identifier
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<a href="http://doi.org/10.1177/10497323231201023" target="_blank" rel="noreferrer noopener">10.1177/10497323231201023</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
Bereavement
Child
Child Parent Relation
Congenital Malformation
Controlled Study
Decision Making
Ethics
February List 2024
Grief
Human
Infant
Kunyk D
Lakhani J
Mack C
Medical Care
Morality
Narrative
Neonatal Intensive Care Unit
Palliative Therapy
Prematurity
Qualitative Health Research
Uncertainty
van Manen 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
March 2023 List
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).
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 List 2023
URL Address
<a href="http://doi.org/10.1136/spcare-2022-HUNC.102" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/spcare-2022-HUNC.102</a>
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Title
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Learning Disability Nurses in Palliative Care - A Narrative on Diversifying the Workforce and the Caseload
Publisher
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BMJ Supportive and 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
learning disorder; narrative; nurse; Palliative Therapy; workforce; Adult; Adulthood; Attention; Autism; Child; cognitive defect; cohort analysis; conference abstract; distress syndrome; employment; epilepsy; Female; geriatric disorder; Hospice; Human; learning; Learning Disorders; malignant cardiac tumor; neurodisability; Palliative Care; skill; Terminal Care; treatment failure
Creator
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Marsden S
Description
An account of the resource
There have been multiple recent reports regarding the inequalities in palliative and end of life care for people with learning disabilities; but little if any attention paid to the role of learning disability nurses working in palliative care. Children's hospices often have a well-established cohort of learning disability nurses in their employment. This has not currently translated into adult palliative care; increasingly though, children with complex neuro-disabilities and life-limiting conditions are living into adulthood with good care, and need specialist symptom management and end of life care through transition into adult services. Adults with learning disabilities and other complex health conditions are also now living into later life and are more likely to develop age related illnesses such as cancers, heart failure etc., rather than dying from an acute episode related to epilepsy, for example. Learning disability nurses bring a specialist skill set in supporting people with a known LD diagnosis, but also those with acquired cognitive impairment, those in mental distress, people with communication difficulties and autistic people. A Learning Disability Nurse may recognise undiagnosed learning or support needs in patients, and be able to provide strategies to ameliorate those needs. The author would like to present a narrative on her experiences of moving into palliative care and how Learning Disability Nurses can provide a new perspective and skill set within the specialist palliative care team.
Identifier
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<a href="http://doi.org/10.1136/spcare-2022-HUNC.102" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.102</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
Adult
ADULTHOOD
Attention
Autism
BMJ Supportive and Palliative Care
Child
Cognitive Defect
Cohort Analysis
conference abstract
Distress Syndrome
Employment
Epilepsy
Female
geriatric disorder
Hospice
Human
Learning
learning disorder
Learning Disorders
malignant cardiac tumor
March List 2023
Marsden S
Narrative
Neurodisability
Nurse
Palliative Care
Palliative Therapy
Skill
Terminal Care
Treatment Failure
workforce
-
Dublin Core
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Title
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January 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January List 2023
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2021-003087" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjspcare-2021-003087</a>
Dublin Core
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Title
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Designing the physical environment for inpatient palliative care: A narrative review
Publisher
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BMJ Supportive and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Hospice Care; Hospital Care; Hospital Patient; Narrative; Nursing Home; Palliative Therapy; Cinahl; Family Management; Hospice Care; Hospital Care; Medline; PsycINFO; Adult; Built Environment; Child; Comfort; Conception; Data Extraction; Data Synthesis; Emergency Ward; Family Interaction; Family Management; Hospice Care; Hospital Care; Nursing Home Care; Female; Furniture; Human; Human Dignity; Male; Nursing Home; Privacy; Review; Systematic Review; Thematic Analysis
Creator
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Wong K; McLaughlan R; Collins A; Philip J
Description
An account of the resource
Background: It is essential that the physical environments in which inpatient palliative care is provided support the needs of patients and the facilitate the multidimensional delivery of palliative care. This review aims to identify the features and characteristics of inpatient palliative care environments that enhance or detract from the patient experience; and identify opportunities for progress within this field. Method(s): Three databases were searched: MEDLINE (1946-2020), PsycINFO (1806-2020) and CINAHL (1937-2020). Articles were screened by title and abstract with included studies read in full for data extraction. Data synthesis involved thematic analysis informed by the findings of the included literature. Inclusion criteria were studies with empirical methodology examining adult palliative care in the hospital, hospice or nursing home environment. Studies that examined palliative care delivered within the emergency department, ICU or within the home were excluded, as were those related to paediatric palliative care. Result(s): Four main themes were identified: the provision of privacy, facilitating interactions with family, facilitating comfort through homeliness and connections to nature. Conclusion(s): The board acceptance of single rooms as the preeminent design solution for supporting privacy, dignity and family interaction, alongside current conceptions of homeliness that typically focus on matters of interior design, are limiting possibilities for further design innovation within palliative care settings. Research that investigates a broader set of design strategies through which the built environment can support care, alongside enhanced interdisciplinary collaboration, could positively contribute to patient and family experiences of inpatient palliative care.Copyright © Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2021-003087" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-003087</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).
Child
Hospice Care
Hospital Care
Human
Thematic Analysis
2021
Adult
BMJ Supportive and Palliative Care
Built Environment
Cinahl
Collins A
Comfort
Conception
data extraction
Data Synthesis
Emergency Ward
Family Interaction
Family Management
Female
Furniture
Hospice Care
Hospital care
Hospital Patient
Human Dignity
January List 2023
Male
McLaughlan R
Medline
Narrative
nursing home
Nursing Home Care
Palliative Therapy
Philip J
Privacy
Psycinfo
Review
Systematic Review
Wong K
-
Dublin Core
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Title
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December 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December List 2022
URL Address
<a href="http://doi.org/10.21037/apm-22-525" target="_blank" rel="noreferrer noopener"> http://doi.org/10.21037/apm-22-525</a>
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Title
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Pediatric Palliative Care through the Eyes of Healthcare Professionals, Parents and Communities: A Narrative Review
Publisher
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Annals of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Cinahl; Embase; Medical Subject Headings; Medline; Palliative care; PsycINFO; United States; article; attitudes; child; community sample; controlled study; developing country; eligibility; female; high income country; human; knowledge; male; narrative; palliative therapy; pediatric; systematic review; terminal care
Creator
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Saad R; Huijer HAS; Noureddine S; Sailian SD
Description
An account of the resource
BACKGROUND AND OBJECTIVE: Pediatric palliative care is a holistic approach that aims to enhance the quality of life of seriously ill children and their families. Despite the documented benefits, many barriers challenge early integration of such care. The lack of knowledge and negative attitudes and beliefs toward pediatric palliative care are often cited among these barriers. This narrative review aims to summarize the existing literature regarding knowledge, attitudes and beliefs toward pediatric palliative care among healthcare professionals, parents and communities. METHOD(S): Four databases were searched: Medline, EMBASE, PsychINFO, and Cumulative Index to Nursing and Allied Health Literature Complete. The search strategy combined Medical Subject Headings, terms and keywords using Boolean operators to retrieve references addressing each concept of interest within the English literature. The initial search was conducted in August 2020 and updated in August 2021. No date limits were set. Two independent authors screened the retrieved papers for eligibility. KEY CONTENT AND FINDINGS: The majority of the 60 retrieved articles (n=49, 82%) were derived from high-income countries, with almost half of them from the United States. The references from developing countries were scattered across continents. The perspectives of healthcare professionals were more extensively explored compared to parents and community samples. Reports describe confusion between pediatric palliative care and end-of-life care. Yet, a positive attitude toward pediatric palliative care prevails whenever respondents possess accurate information about such care. CONCLUSION(S): This comprehensive review of different perspectives on pediatric palliative care helped in identifying the literature gaps and provided direction for future research in this area. The need to enhance accurate knowledge and promote understanding especially in developing countries was emphasized. This review also highlighted factors that influence knowledge, attitudes and beliefs toward pediatric palliative care, and identified the need for validated tools for research.
Identifier
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<a href="http://doi.org/10.21037/apm-22-525" target="_blank" rel="noreferrer noopener">10.21037/apm-22-525</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
Annals of Palliative Medicine.
Article
Attitudes
Child
Cinahl
community sample
Controlled Study
December List 2022
developing country
eligibility
Embase
Female
high income country
Huijer HAS
Human
Knowledge
Male
Medical Subject Headings
Medline
Narrative
Noureddine S
Palliative Care
Palliative Therapy
Pediatric
Psycinfo
Saad R
Sailian SD
Systematic Review
Terminal Care
United States
-
Dublin Core
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Title
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August 2022 List
Text
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Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.1097/NJH.0000000000000884" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/NJH.0000000000000884</a>
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"I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either": Comparing Bereaved Parents' Narratives With Nursing End-of-Life Assessments in the Pediatric Intensive Care Unit
Publisher
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Journal of hospice and palliative nursing
Date
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2022
Subject
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child; terminal care; nursing; chronic disease; male; pain; human; intensive care; pediatric intensive care unit; perception; narrative; article; controlled study; interview; major clinical study; distress syndrome; comfort; cancer patient; quantitative analysis; malignant neoplasm; infant; sedation; memory
Creator
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Broden EG; Hinds PS; Werner-Lin AV; Curley MAQ
Description
An account of the resource
Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents' qualitative perceptions. We used a mixed methods design, combining quantitative data from the RESTORE clinical trial with qualitative interviews with bereaved parents. Patients who died during RESTORE were included in quantitative analyses. A subset of their parents was interviewed 7 to 11 years later. The quantitative analyses included 104 children. Eight parents were interviewed; 4 had a child die after cancer, and 4 had a child die after a complex chronic illness. Quantitatively, patients' pain and sedation scores were generally comfortable. Children died with multiple invasive devices in place. Parents' descriptions of their child's comfort and critical care requirements differed by illness trajectory (cancer, complex chronic illness). Parents' memories of their child's suffering aligned with peaks in clinical scores, rather than averages. Invasive devices and equipment altered parents' ability to make meaningful final memories with the dying child. Pediatric intensive care clinicians may need to broaden how they attend to dying children's pain and corresponding parental distress, as parents' memories of their dying child's suffering persist for years. Copyright © 2022 by The Hospice and Palliative Nurses Association. All rights reserved.
Identifier
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<a href="http://doi.org/10.1097/NJH.0000000000000884" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000884</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
Article
August 2022 List
Broden EG
Cancer Patient
Child
Chronic Disease
Comfort
Controlled Study
Curley MAQ
Distress Syndrome
Hinds PS
Human
Infant
Intensive Care
Interview
Journal of Hospice and Palliative Nursing
Major Clinical Study
Male
Malignant Neoplasm
Memory
Narrative
Nursing
Pain
Pediatric Intensive Care Unit
Perception
quantitative analysis
Sedation
Terminal Care
Werner-Lin AV
-
Dublin Core
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Title
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May 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
May 2022 List
URL Address
<a href="http://doi.org/10.1002/pne2.12074" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pne2.12074</a>
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Title
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"Communicating Lily's Pain": A reflective narrative commentary about co-creating a resource to provoke thinking and change about assessing and managing the pain of children with profound cognitive impairment
Publisher
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Paediatric and Neonatal Pain
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; Co-creation; Cognitive impairment; Narrative; Pain; Pediatrics
Creator
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Carter B; Young R; Munro J
Description
An account of the resource
This paper draws together about 20 years of research work and discovery and the development of a resource about pain assessment and management in children with profound cognitive impairment. The animation tells the story of an imagined child called Lily and the skills her mother uses and the challenges that her mother faces in assessing and managing Lily's pain. The animation is built on stories drawn from qualitative research findings, conversations while in clinical practice and with members of the general public, parent advisers and other sources. Most of the "evidence" came from stories shared by parents and healthcare professionals. This paper draws on some elements of socio-narratology and is predicated on the basis that stories are important and they can act on and with us. By using an animation to tell Lily's story, the intention was to communicate research findings to a wider and more diverse audience than the typical readership of an academic journal. The intention was to act in and on people's consciousness about children's pain and to strengthen relationships and create bonds between clinicians, parents, and children in pain to make their dialog more social, connected, and meaningful. All three of us-the researcher, the writer, and the animator-have been marked and "re-shaped" by our work related to creating Lily; we have learned more about children like Lily and their mothers, and we have learned more about ourselves and our humanity. This animation is still a story in progress, a story 'in the wild', a story (and a resource) we would like you to re-tell and share. The story of Lily's pain aimed to change the lives of parents and children and professionals. Our hope is that you can be part of that change. Copyright © 2022 The Authors. Paediatric and Neonatal Pain published by John Wiley & Sons Ltd.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pne2.12074" target="_blank" rel="noreferrer noopener">10.1002/pne2.12074</a>
2022
Carter B
Children
Co-creation
cognitive impairment
May 2022 List
Munro J
Narrative
Paediatric and Neonatal Pain
Pain
Pediatrics
Young 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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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/455">https://pediatrics.aappublications.org/content/144/2_MeetingAbstract/455</a>
Dublin Core
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What impedes timely pediatric palliative care consults? A preliminary report
Publisher
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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; conference abstract; education; female; human; major clinical study; male; medical staff; narrative; nurse; Palliative therapy; pediatric patient; quality of life; responsibility; terminal care
Creator
An entity primarily responsible for making the resource
Marell P; Gupta S; Goloff N; Sherva K
Description
An account of the resource
Background: Pediatric palliative care (PPC) provides support focused on comfort and wellbeing for patients with serious illness and their families and assists with difficult care decisions, aiming to align medical care with the goals and values of the patient and family. Studies have shown that despite the benefits of PPC, many patients do not benefit from timely consultation (Morita et al.). Little, however, is known about the reasons for this. Objective: The purpose of this QI project was to identify barriers to PPC to inform an intervention aimed at increasing timely consultations at our hospital. Methods: Our team surveyed members of the inter-professional healthcare team as well as patients/families to assess attitudes, knowledge, and barriers related to PPC. In addition, parents gave narrative feedback at a hospital parent advisory board meeting. Results: Survey of healthcare workers (n = 243) showed that nurses had the smallest percentage of very favorable opinions toward PPC (64%), with the NICU (65%) and the ED (57%) as the units reporting lowest in that category. Nurses also had the lowest percentage of “good” or “excellent” understanding of PPC (27%), with the NICU (29%) and the ED (29%) again reporting lowest in that category. Attitude was positively correlated with knowledge (figure 1): 93% of respondents who rated their understanding as excellent had a very favorable opinion of PPC. The top barriers to PPC consultation were not knowing whose responsibility it was to order a consultation (24%) and worry about undermining parental hope (19%). More than half (68%) of respondents indicated that they ask permission of the patient/family before ordering a PPC consultation. Respondents reported that PPC consultations generally occurred when curative interventions were no longer possible (37%) and during end-of-life care (24%). Survey of patients/families (n = 33) showed that only 30% had a confident understanding of PPC services and 55% had received information regarding PPC from medical staff. Seventy percent had a favorable view of PPC while 21% needed more information to form an opinion. Comments from the parent advisory board indicated that lack of information regarding PPC is the major barrier for PPC utilization for patients/families. Conclusions and future directions: These results indicate that attitudes toward PPC and lack of education regarding PPC are the most common barriers to timely PPC consultations. As well, lack of information is likely a major contributing factor to unfavorable attitudes. Our intervention will aim to improve knowledge about and thus attitudes toward PPC. With each intervention we will complete a Plan-Do-Study-Act (PDSA) cycle and evaluate its success in increasing timely PPC consultations, with the ultimate goal of improving quality of life and goal-oriented care for our pediatric patients.
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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
Child
conference abstract
Education
Female
Goloff N
Gupta S
Human
Major Clinical Study
Male
March 2020 List
Marell P
Medical Staff
Narrative
Nurse
Palliative Therapy
pediatric patient
Pediatrics
Quality Of Life
responsibility
Sherva K
Terminal Care
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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.neurenf.2019.07.001" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.neurenf.2019.07.001</a>
Dublin Core
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Title
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Musicotherapy and narrative creations with an adolescent admitted to the pediatric hematology-oncology department
Publisher
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Neuropsychiatrie de l'Enfance et de l'Adolescence.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adolescent; appendix; article; child; death; hematology; hospitalized adolescent; human; identity; injury; male; music therapy; Music therapy mediation; narrative; Narrative identity; oncology; Palliative care; palliative therapy; sound; symbolism; Symbolization; Trauma
Creator
An entity primarily responsible for making the resource
Viode C; Ledeuil E; Crinquand S; Lignier B
Description
An account of the resource
This groundbreaking study focuses on the link between music-therapy and narrativity in a pediatric hematology-oncology unit. The goal is to observe and analyse the psychic processes in this therapeutic mediation. We aim to study the creative processes through the narrative productions of a sick and hospitalized teenagers. The interest of this original work with regard to previous research is to focus on the internal mechanisms of the patient and his narrative identity rather than on the active ingredient and the therapeutic method itself or its effect on a particular symptom. Based on a clinical situation of a young man of 19 years followed in onco-hematology, authors show how the creation of a sound link and subsequent narration on this sound object can be used as a "cordage" for seriously ill adolescents to endure the trauma of announcing the disease and announcing an imminent promise of death. We wish to support the issues of therapeutic support in order to demonstrate their resources with which they can subjectively assume their traumatic and painful journey, in this very specific space-time. His text, reproduced in appendix, is the subject of a literary analysis then of a psychopathological discussion. Copyright © 2019 Elsevier Masson SAS
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.neurenf.2019.07.001" target="_blank" rel="noreferrer noopener">10.1016/j.neurenf.2019.07.001</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
Adolescent
appendix
Article
Child
Crinquand S
Death
Hematology
hospitalized adolescent
Human
Identity
injury
Ledeuil E
Lignier B
Male
Music Therapy
Music therapy mediation
Narrative
Narrative identity
Neuropsychiatrie de l'Enfance et de l'Adolescence.
Oncology
Oncology 2019 List
Palliative Care
Palliative Therapy
Sound
Symbolism
Symbolization
Trauma
Viode C
-
Dublin Core
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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/10.1089/jayao.2019.0084" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jayao.2019.0084</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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End-of-Life Communication Needs for Adolescents and Young Adults with Cancer: Recommendations for Research and Practice
Publisher
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Journal of adolescent and young adult oncology.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adolescent; adult; article; controlled study; conversation; face cancer; human; narrative; pain; palliative therapy; terminal care; young adult
Creator
An entity primarily responsible for making the resource
Sansom-Daly U M; Wakefield C E; Patterson P; Cohn R J; Rosenberg A R; Wiener L; Fardell J E
Description
An account of the resource
A growing evidence base highlights the negative impact of poor psychosocial care at end-of-life. Adolescents and young adults (AYAs) 15-39 years of age with cancer face unique medical and psychosocial challenges that make them especially vulnerable when treatment is not successful. Although the importance of age-appropriate medical and psychosocial care is internationally recognized for AYAs across the cancer trajectory, there is little guidance on best-practice care and communication practices with AYAs as they approach the end-of-life. We conducted a narrative review and found evidence points to the potential benefits of introducing palliative care teams early in the care trajectory. Research undertaken to date emphasizes the importance of exploring AYAs' preferences around end-of-life issues in a repeated, consistent manner, and highlighted that AYAs may have strong preferences on a range of issues such as being able to stay in their own home, being comfortable and free from pain, and expressing their wishes to loved ones. We highlight a number of best-practice recommendations to guide clinicians around the critical elements of when, who, what, and how end-of-life conversations may be best facilitated with AYAs. Gaps in the evidence base remain, including research focusing on better understanding barriers and facilitators to timely, age-appropriate end-of-life communication for AYAs with different diagnoses, where discordance between AYA-parent preferences exists, and when AYAs die at home versus in hospital. We have proposed a new model to support clinicians and researchers to better conceptualize how interacting individual, familial, and sociocultural factors impact end-of-life communication with AYAs in clinical settings.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jayao.2019.0084" target="_blank" rel="noreferrer noopener">10.1089/jayao.2019.0084</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).
2019
Adolescent
Adult
Article
Cohn R J
Controlled Study
Conversation
face cancer
Fardell J E
Human
Journal of adolescent and young adult oncology.
Narrative
Oncology 2019 List
Pain
Palliative Therapy
Patterson P
Rosenberg A R
Sansom-Daly U M
Terminal Care
Wakefield C E
Wiener L
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
December 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2019 List
URL Address
<a href="http://doi.org/10.1177/1049909119879413" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909119879413</a>
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Title
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The Experience of Pediatric Palliative Caregiving: A Qualitative Analysis From the Photographs of Meaning Program
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
2019
Subject
The topic of the resource
article; care behavior; caregiver; child; curriculum; female; human; human experiment; male; meaning making; narrative; palliative therapy; pediatrics; photography; qualitative analysis; qualitative research; social media
Creator
An entity primarily responsible for making the resource
Levy K; Grant PC; Tenzek KE; Depner RM; Pailler ME; Beaupin LK
Description
An account of the resource
The Photographs of Meaning Program for pediatric palliative caregivers (POM-PPCG) is an innovative, meaning-based intervention utilizing photovoice and social media components. In 2017, 9 pediatric palliative caregivers participated in this intervention. During the social media portion of the POM-PPCG, participants were presented with weekly themes based on a meaning-making curriculum. In response, they took photographs, applied either audio or typed narratives, and shared them via social media. Ninety-five photographs with narratives were produced during the intervention. Through thematic qualitative analysis with consensual qualitative research components, 5 themes were identified: Love, Challenges, Loss, Coping, and The New Normal. This study adds to existing literature by shedding light on the experiences of caregivers of children with palliative care needs. Findings from this research contribute not only to the innovative use of qualitative methods but also to the clinical knowledge and practice regarding the pediatric palliative caregiver experience.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909119879413" target="_blank" rel="noreferrer noopener">10.1177/1049909119879413</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).
2019
Article
Beaupin LK
care behavior
Caregiver
Child
Curriculum
December 2019 List
Depner RM
Female
Grant PC
Human
Human Experiment
Levy K
Male
meaning making
Narrative
Pailler ME
Palliative Therapy
Pediatrics
Photography
Qualitative Analysis
Qualitative Research
social media
Tenzek KE
The American Journal of Hospice & Palliative 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
August 2019 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 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0335" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0335</a>
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Title
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Perceptions of a Good Death in Children with Life-Shortening Conditions: An Integrative Review
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
children; death; Medline; article; child; female; human; male; palliative therapy; pediatric palliative care; systematic review; perception; Cinahl; data extraction; Embase; narrative; synthesis; Web of Science; PsycINFO; social care; health care system; life-shortening conditions
Creator
An entity primarily responsible for making the resource
Chong P H; Walshe C; Hughes S
Description
An account of the resource
Background: For children with life-shortening illness, achieving a "good death" can be a tacit goal. There is little understanding of how different stakeholders perceive what a "good death" might be. Objective(s): To review empirical literature to construct an understanding of a "good death" for children with life-shortening conditions. Design(s): An integrative review approach was followed. This involved searching across Embase, Web of Science, Medline, CINAHL, and PsycINFO (no date limits set), as well as identifying eligible studies tracking reference lists. Appraisal of shortlisted articles in full text was performed, followed by data extraction, synthesis, and interpretation. Result(s): Analysis of articles (n = 24) yielded a dynamic and layered narrative about a good death that revolved around three themes. (1) Level of needs: includes both practical support and aspirational goals such as "do everything." (2) The composite experience: whether positive or negative adds to produce a sense of suffering. (3) Control (preservation and letting go): moving from maintaining status quo to acceptance of the child's death, the experience of which also contributes to suffering. Framed using a health care system perspective, a concept map that interprets a good death in children with life-shortening conditions is represented. Conclusion(s): A single yet holistic understanding of a good death experienced in the "real world" is suggested. Pediatric health and social care providers, and even policy makers, can use this new understanding to conceive alternative approaches to enhance support to dying children and their families. Copyright � 2019, Mary Ann Liebert, Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2018.0335" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0335</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).
2019
Article
August 2019 List
Child
Children
Chong P H
Cinahl
data extraction
Death
Embase
Female
Health Care System
Hughes S
Human
Journal of Palliative Medicine
life-shortening conditions
Male
Medline
Narrative
Palliative Therapy
Pediatric Palliative Care
Perception
Psycinfo
Social Care
synthesis
Systematic Review
Walshe C
Web of Science
-
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
September 2019 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 2019 List
URL Address
<a href="http://doi.org/10.1186/s13643-019-1059-8" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s13643-019-1059-8</a>
Dublin Core
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Title
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Influence of health interventions on quality of life in seriously ill children at the end of life: A systematic review protocol
Publisher
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Systematic Reviews
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Medline; child; female; human; male; pain; quality control; systematic review; anxiety; pediatrics; quality of life; checklist; Cinahl; data extraction; Embase; meta analysis; narrative; publication; random sample; research priority; review; synthesis; Web of Science
Creator
An entity primarily responsible for making the resource
Piette VE; Cohen J; Deliens L; Pauwels N; Van Der Werff Ten Bosch J; Beernaert K
Description
An account of the resource
Background Seriously ill children suffer from numerous symptoms at the end of their lives, including pain, anxiety, and restricted communication. There are currently no comprehensive overviews of which health interventions have proven benefits and which have proven detrimental effects on the quality of life of children in an end-of-life context. In order to identify potential quality indicators to eventually improve care, a systematic review of available evidence is needed. The aim of the current systematic review will be to make an overview of the influence of health interventions on associated outcomes related to quality of life at the end of life in seriously ill children. Methods A systematic search will be conducted in MEDLINE, Embase, CENTRAL, CINAHL, and Web of Science. We will include quantitative empirical designs looking into the influence of a health intervention on (proxies of) quality of life at the end of life in seriously ill children. Three independent authors will review titles and abstracts and screen full texts against eligibility criteria. One reviewer will carry out full data extraction and quality assessment, and a 20% random sample will be extracted and assessed by two independent reviewers. We will use the QualSyst Tool for assessment of the quality of the included studies (QualSyst Tool) for quality assessment; overall strength of the body of evidence will be assessed using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach. An overview table of health interventions will be discussed through narrative synthesis. Should sufficient homogeneous publications arise, we will perform meta-analyses with a random-effects model. Our protocol adheres to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) checklist for study protocols. Discussion As part of a larger project, we will use the results of this review to identify a first set of quality indicators for the care for children at the end of life. Reviewing the current span of evidence and identifying research gaps will uncover future research priorities into the care for children at the end of life.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s13643-019-1059-8" target="_blank" rel="noreferrer noopener">10.1186/s13643-019-1059-8</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).
2019
anxiety
Beernaert K
Checklist
Child
Cinahl
Cohen J
data extraction
Deliens L
Embase
Female
Human
Male
Medline
meta analysis
Narrative
Pain
Pauwels N
Pediatrics
Piette VE
publication
quality control
Quality Of Life
random sample
Research Priority
Review
September 2019 List
synthesis
Systematic Review
Systematic reviews
Van Der Werff Ten Bosch J
Web of Science
-
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
2018 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 2018 List
URL Address
<a href="http://doi.org/10.1111/ecc.12651" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1111/ecc.12651</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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Missing life stories. The narratives of palliative patients, parents and physicians in paediatric oncology
Publisher
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European Journal of Cancer 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
Neoplasms/psychology; Medical Oncology; Middle Aged; Male; Disease Progression; dying; Child; Humans; Adult; Qualitative Research; Pediatrics; Adolescent; Parents; palliative care; Female; Attitude to Death; Attitude to Health; Narration; Switzerland; narrative; Leukemia/psychology; paediatric oncology; stories; lived experience; Oncologists; Bone Neoplasms/psychology; Sarcoma/psychology; Soft Tissue Neoplasms/psychology
Creator
An entity primarily responsible for making the resource
De CE; Elger BS; Wangmo T
Description
An account of the resource
Illness narratives have become very popular. The stories of children, however, are rarely ever studied. This paper aims to provide insight into how children, parents and physicians make sense of progressive childhood cancer. It also explores how this meaning-giving process interacts with cultural dominant stories on cancer and dying. The presented data come from 16 open-ended face-to-face interviews with palliative paediatric patients, their parents and physicians. The interviews were carried out in eight paediatric oncology centres in Switzerland. Data analysis followed Arthur Frank's dialogical narrative analysis. Quest narratives were relatively rare compared to both chaos and restitution stories. All participants welcomed chaos stories as a liminal haven between quest and restitution. The possibility that the child could die was either ignored or briefly contemplated, but then immediately pushed away. Except for one patient, children never directly addressed the topic of death. The way in which death was presented raises important questions about how the social discourse on dying is framed in terms of choice, autonomy and individuality. This discourse not only determines the way in which children and adults relate to the minor's death, it also constitutes an obstacle to children's participation in decision-making.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/%2010.1111/ecc.12651" target="_blank" rel="noreferrer noopener">10.1111/ecc.12651</a>
2017
Adolescent
Adult
Attitude To Death
Attitude To Health
Bone Neoplasms/psychology
Child
De CE
Disease Progression
Dying
Elger BS
European Journal Of Cancer Care
Female
Humans
Leukemia/psychology
lived experience
Male
Medical Oncology
Middle Aged
Narration
Narrative
Neoplasms/psychology
oncologists
Oncology 2018 List
Paediatric oncology
Palliative Care
Parents
Pediatrics
Qualitative Research
Sarcoma/psychology
Soft Tissue Neoplasms/psychology
Stories
Switzerland
Wangmo 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
A name given to the resource
November 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2018 List
URL Address
<a href="http://doi.org/10.1186/s12904-018-0360-y" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-018-0360-y</a>
Dublin Core
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Title
A name given to the resource
Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: 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
2018
Subject
The topic of the resource
decision making;intensive care;life sustaining treatment;neonatology;Palliative therapy;qualitative research;religion;treatment withdrawal;article;Child;father;genetic transcription;health care personnel;Human;human tissue;interview;major clinical study;Male;medical record;mother;narrative;prognosis;thematic analysis
Creator
An entity primarily responsible for making the resource
Superdock AK;Barfield RC;Brandon DH;Docherty SL
Description
An account of the resource
Background: Medical advances have led to new challenges in decision-making for parents of seriously ill children. Many parents say religion and spirituality (R&S) influence their decisions, but the mechanism and outcomes of this influence are unknown. Health care providers (HCPs) often feel unprepared to discuss R&S with parents or address conflicts between R&S beliefs and clinical recommendations. Our study sought to illuminate the influence of R&S on parental decision-making and explore how HCPs interact with parents for whom R&S are important. Methods: A longitudinal, qualitative, descriptive design was used to (1) identify R&S factors affecting parental decision-making, (2) observe changes in R&S themes over time, and (3) learn about HCP perspectives on parental R&S. The study sample included 16 cases featuring children with complex life-threatening conditions. The length of study for each case varied, ranging in duration from 8 to 531 days (median = 380, mean = 324, SD = 174). Data from each case included medical records and sets of interviews conducted at least monthly with mothers (n = 16), fathers (n = 12), and HCPs (n = 108). Thematic analysis was performed on 363 narrative interviews to identify R&S themes and content related to decision-making. Results: Parents from 13 cases reported R&S directly influenced decision-making. Most HCPs were unaware of this influence. Fifteen R&S themes appeared in parent and HCP transcripts. Themes most often associated with decision-making were Hope & Faith, God is in Control, Miracles, and Prayer. Despite instability in the child's condition, these themes remained consistently relevant across the trajectory of illness. R&S influenced decisions about treatment initiation, procedures, and life-sustaining therapy, but the variance in effect of R&S on parents' choices ultimately depended upon other medical & non-medical factors. Conclusions: Parents consider R&S fundamental to decision-making, but apply R&S concepts in vague ways, suggesting R&S impact how decisions are made more than what decisions are made. Lack of clarity in parental expressions of R&S does not necessarily indicate insincerity or underestimation of the seriousness of the child's prognosis; R&S can be applied to decision-making in both functional and dysfunctional ways. We present three models of how religious and spiritual vagueness functions in parental decision-making and suggest clinical applications.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-018-0360-y" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0360-y</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).
2018
Article
Barfield RC
BMC Palliative Care
Brandon DH
Child
Decision Making
Docherty SL
Father
genetic transcription
Health Care Personnel
Human
Human Tissue
Intensive Care
Interview
Life Sustaining Treatment
Major Clinical Study
Male
Medical Record
Mother
Narrative
Neonatology
November 2018 List
Palliative Therapy
Prognosis
Qualitative Research
Religion
Superdock AK
Thematic Analysis
Treatment Withdrawal
-
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 2018 List
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).
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 2018 List
URL Address
<a href="http://doi.org/10.1007/s00520-018-4193-2" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00520-018-4193-2</a>
Dublin Core
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Title
A name given to the resource
Wrapped with love-art therapy in paediatric palliative care
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
2018
Subject
The topic of the resource
human; child; expectation; female; male; palliative therapy; comfort; controlled study; conference abstract; narrative; human experiment; art therapy; extended family; grandchild; grandparent; program effectiveness; rest
Creator
An entity primarily responsible for making the resource
King J
Description
An account of the resource
Introduction To discuss the extended family support that is required in children's palliative care, focusing on Grandparents, who sometimes may be seen as the 'forgotten mourners'. Objectives Utilizing art psychotherapy in a group setting to encourage peer support between ten grandparents (bereaved and non-bereaved) within our inaugural weekend Camp program. Methods Detailing one art therapy session the first morning of the Camp where each of the group chose a pebble to represent their grandchild. They were then invited to choose a different layer, from an extensive array of art materials, to represent each of the important people that wrap, swaddle, comfort, protect, support, and surround this child. There was time dedicated to share their experience and/or artwork within the confidential safe space of the group. This allowed them to express some of the difficulties of having a grandchild with a life limiting illness and the dynamics within the extended family. Results Anonymous pre-and post-narrative evaluations were used to assess expectations prior to the Grandparents weekend and the effectiveness of the program. Discussions within the group at the end of the session and throughout the rest of the weekend revealed that although it had been hard for some to open up, and at times emotional, it was therapeutic and helped form strong bonds within the grandparents. Conclusions It was a useful tool to share internally with the multi-disciplinary team, with added insight utilizing this creative medium. Would possibly like to evaluate more specifically the art therapy component of the program in future camps.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00520-018-4193-2" target="_blank" rel="noreferrer noopener">10.1007/s00520-018-4193-2</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
Art Therapy
August 2018 List
Child
Comfort
conference abstract
Controlled Study
Expectation
extended family
Female
grandchild
grandparent
Human
Human Experiment
King J
Male
Narrative
Palliative Therapy
program effectiveness
rest
Supportive Care In Cancer
-
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 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1016/j.chc.2018.05.011" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1016/j.chc.2018.05.011</a>
Dublin Core
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Title
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Making Meaning After the Death of a Child
Publisher
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Child and Adolescent Psychiatric Clinics of North America
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
bereavement; death; medical education; palliative therapy; storytelling; voice; article; child; controlled study; empathy; female; human; mother; narrative; skill; student; videorecording
Creator
An entity primarily responsible for making the resource
Clancy S; Lord B
Description
An account of the resource
Two bereaved mothers recount how they made meaning after the deaths of their children, recounting how opportunities to tell their stories in medical settings enabled them to construct narratives that promoted resilience and a sense of control. Pediatric palliative care can be conceived as opening space for patients and guardians to tell their stories outside of the specifics of illness, so medical teams can work to accommodate families' values and goals, thereby initiating the process of meaning making. Viewing videos of parent stories enables medical trainees to enhance their communications skills, empathy, and compassion.Copyright © 2018 Elsevier Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.chc.2018.05.011" target="_blank" rel="noreferrer noopener">10.1016/j.chc.2018.05.011</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).
2018
Article
Bereavement
Child
Child And Adolescent Psychiatric Clinics Of North America
Clancy S
Controlled Study
Death
Empathy
Female
Human
Lord B
Medical Education
Mother
Narrative
Palliative Therapy
September 2018 List
Skill
Storytelling
Student
videorecording
Voice
-
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
Backlog
URL Address
<a href="http://doi.org/10.2190/om.59.3.e" target="_blank" rel="noreferrer">http://doi.org/10.2190/om.59.3.e</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
Embodied grief: Bereaved parents' narrative of their suffering body
Publisher
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Omega
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Grief; Parents; narrative
Creator
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Gudmundsdottir M
Identifier
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<a href="http://doi.org/10.2190/om.59.3.e" target="_blank" rel="noreferrer">10.2190/om.59.3.e</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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2009
2009
Backlog
Grief
Gudmundsdottir M
Journal Article
Narrative
Omega
Parents
-
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
Backlog
URL Address
<a href="http://doi.org/10.1080/07481180211274" target="_blank" rel="noreferrer">http://doi.org/10.1080/07481180211274</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
Taking a narrative approach to grief research: Finding meaning in stories
Publisher
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Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Child; Grief; Death; Qualitative Research; Role; Research; Time; Interviews; narrative; Meaning; emotion
Creator
An entity primarily responsible for making the resource
Gilbert KR
Description
An account of the resource
This article explores the concepts of narrative as story, of storytelling, and of the narrative approach to qualitative research. Within this, I will also examine the social nature of narrative and the implications of this for research. I will look at the process of conducting a narrative study and the implications for participation in such a project and for the researcher investigating a phenomenon through this frame. In particular, the need to create stories to make order of disorder and find meaning in the meaningless is particularly relevant to the study of grief. In looking at the process of conducting a narrative study, questions about what can be analyzed and how it might be presented, some strengths and limitations of the narrative approach, and ethical questions also are considered.
2002
Identifier
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<a href="http://doi.org/10.1080/07481180211274" target="_blank" rel="noreferrer">10.1080/07481180211274</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).
Type
The nature or genre of the resource
Journal Article
2002
Backlog
Child
Death
Death studies
Emotion
Gilbert KR
Grief
Interviews
Journal Article
Meaning
Narrative
Qualitative Research
Research
Role
Time
-
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
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1467-9566.2004.00393.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1467-9566.2004.00393.x</a>
Dublin Core
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Title
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A grief ignored: Narratives of pregnancy loss from a male perspective
Publisher
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Sociology Of Health & Illness
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Male; Grief; Pregnancy; Attitude; Nurses; Fathers; Role; Research; Self-Help Groups; bereavement; Interviews; narrative; Anger; Paper; Support; Meaning; emotion; male grief; pregnancy loss
Creator
An entity primarily responsible for making the resource
McCreight BS
Description
An account of the resource
This paper, utilising a narrative approach, aims to describe the experiences of men whose partner had experienced pregnancy loss, based on data from Northern Ireland. The methodology was based upon observation within pregnancy loss self-help groups and in-depth interviews with 14 men who attended the groups. The study also included interviews with 32 midwives and nurses, with the intention of examining attitudes within the medical context towards bereaved fathers. The impact of pregnancy loss on male partners has been largely overlooked in academic research. When a baby dies before birth the loss can be devastating for fathers yet, very often, the world that surrounds them tends to discount their loss, and emotional support and cultural rituals that are normally available to other bereaved individuals are often absent for this group of men. Previous research has shown that men are expected to be emotionally strong in order to support their partner. The present study will show that the perception that men have only a supportive role in pregnancy loss is unjustified, as it ignores the actual life-world experiences of the men, and the meanings they attach to their loss, in what may be a very personal emotional tragedy for them where they have limited support available. The study uncovered several recurring themes including self-blame; loss of identity; and the need to appear strong and hide feelings of grief and anger. There is consideration of the need for hospital staff and the wider community to acknowledge the male partner's grief as being a valid response to the bereavement suffered.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1467-9566.2004.00393.x" target="_blank" rel="noreferrer">10.1111/j.1467-9566.2004.00393.x</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2004
Anger
Attitude
Backlog
Bereavement
Emotion
Fathers
Grief
Interviews
Journal Article
Male
male grief
McCreight BS
Meaning
Narrative
Nurses
Paper
Pregnancy
Pregnancy Loss
Research
Role
Self-Help Groups
Sociology of Health & Illness
Support
-
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
Backlog
URL Address
<a href="http://doi.org/10.1001/jama.286.15.1897" target="_blank" rel="noreferrer">http://doi.org/10.1001/jama.286.15.1897</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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Narrative medicine. A model for empathy, reflection, profession, and trust
Publisher
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Journal Of The American Medical Association
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Physicians; Qualitative Research; Health; methods; medicine; narrative
Creator
An entity primarily responsible for making the resource
Charon R
Description
An account of the resource
The effective practice of medicine requires narrative competence, that is, the ability to acknowledge, absorb, interpret, and act on the stories and plights of others. Medicine practiced with narrative competence, called narrative medicine, is proposed as a model for humane and effective medical practice. Adopting methods such as close reading of literature and reflective writing allows narrative medicine to examine and illuminate 4 of medicine's central narrative situations: physician and patient, physician and self, physician and colleagues, and physicians and society. With narrative competence, physicians can reach and join their patients in illness, recognize their own personal journeys through medicine, acknowledge kinship with and duties toward other health care professionals, and inaugurate consequential discourse with the public about health care. By bridging the divides that separate physicians from patients, themselves, colleagues, and society, narrative medicine offers fresh opportunities for respectful, empathic, and nourishing medical care.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jama.286.15.1897" target="_blank" rel="noreferrer">10.1001/jama.286.15.1897</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).
Type
The nature or genre of the resource
Journal Article
2001
Backlog
Charon R
Health
Journal Article
Journal Of The American Medical Association
Medicine
Methods
Narrative
Physicians
Qualitative Research
-
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
Backlog
URL Address
<a href="http://doi.org/10.1002/(sici)1098-240x(199708)20:4%3C365::aid-nur9%3E3.3.co" target="_blank" rel="noreferrer">http://doi.org/10.1002/(sici)1098-240x(199708)20:4%3C365::aid-nur9%3E3.3.co</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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Qualitative metasynthesis: Issues and techniques
Publisher
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Research In Nursing & Health
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Qualitative Research; Research; narrative; integrative reviews of research; qualitative metasynthesis; research synthesis
Creator
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Sandelowski M; Docherty S; Emden C
Identifier
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<a href="http://doi.org/10.1002/(sici)1098-240x(199708)20:4%3C365::aid-nur9%3E3.3.co" target="_blank" rel="noreferrer">10.1002/(sici)1098-240x(199708)20:4%3C365::aid-nur9%3E3.3.co</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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
There has been an accumulation of qualitative studies in recent years, but little cumulation of the understandings gained from them. Qualitative research appears endangered both by efforts to synthesize studies and by the failure to do so. Techniques used have included reciprocal translations of key metaphors and concepts and qualitative and quantitative comparative analyses to produce narrative and theoretical integrations. The major problem yet to be resolved is developing usable and communicable systematic approaches to conducting metasynthesis projects that maintain the integrity of individual studies.
1997
Backlog
Docherty S
Emden C
integrative reviews of research
Journal Article
Narrative
qualitative metasynthesis
Qualitative Research
Research
Research In Nursing & Health
research synthesis
Sandelowski M
-
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
Backlog
URL Address
<a href="http://doi.org/10.1006/jrpe.2000.2285" target="_blank" rel="noreferrer">http://doi.org/10.1006/jrpe.2000.2285</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 life transition: subjective well-being and ego development in parents of children with down syndrome
Publisher
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Journal Of Research In Personality
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Growth; narrative; Down Syndrome; Parent caregiving; Subjective Well-Being; transition; Well Being; Well Being
Creator
An entity primarily responsible for making the resource
King LA; Scollon CK; Ramsey C; Williams T
Description
An account of the resource
Eighty-seven parents of children with Down Syndrome (DS; 63 women, 24 men) wrote narratives about finding out that their child had DS and completed questionnaire measures of subjective well-being (SWB) and stress-related growth and completed the Sentence Completion Test as a measure of ego development. Forty-two of these individuals participated in a follow-up 2 years later. Foreshadowing and happy endings in the stories were related to heightened SWB at both time periods. Evidence of accommodative change—actively experiencing a paradigmatic shift—was related to stress-related growth and ego development at both time periods. A high sense of closure and accommodation in the stories was associated with the highest levels of stress-related growth. Implications for research on well-being and personal growth are discussed.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1006/jrpe.2000.2285" target="_blank" rel="noreferrer">10.1006/jrpe.2000.2285</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).
Type
The nature or genre of the resource
Journal Article
2000
Backlog
Down Syndrome
Growth
Journal Article
Journal Of Research In Personality
King LA
Narrative
Parent caregiving
Ramsey C
Scollon CK
Subjective Well-Being
Transition
Well Being
Williams T
-
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
Backlog
URL Address
<a href="http://doi.org/10.1080/107205399266226" target="_blank" rel="noreferrer">http://doi.org/10.1080/107205399266226</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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Narrative strategies in grief therapy
Publisher
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Journal Of Constructivist Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
1999
Subject
The topic of the resource
Grief; narrative; Human; Meaning
Creator
An entity primarily responsible for making the resource
Neimeyer RA
Description
An account of the resource
The field of grief therapy is currently in a state of conceptual revolution, opening the prospect of reconfiguring our understanding of the human experience of loss along constructivist lines. In this article I outline some of the tenets of such an approach, proposing that the reconstruction of a world of meaning is the central process in grieving. I then present several narrative strategies for assisting bereaved people in making meaning of loss, and discuss indications, illustrations, variations, and precautions pertinent to each.
1999
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/107205399266226" target="_blank" rel="noreferrer">10.1080/107205399266226</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).
Type
The nature or genre of the resource
Journal Article
1999
Backlog
Grief
Human
Journal Article
Journal Of Constructivist Psychology
Meaning
Narrative
Neimeyer RA
-
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
Backlog
URL Address
<a href="http://doi.org/10.1606/1044-3894.933" target="_blank" rel="noreferrer">http://doi.org/10.1606/1044-3894.933</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
Trauma, healing, and the narrative emplotment of loss
Publisher
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Families In Society
Date
A point or period of time associated with an event in the lifecycle of the resource
1996
Subject
The topic of the resource
Grief; Stress; Health; narrative
Creator
An entity primarily responsible for making the resource
Neimeyer RA; Stewart Alan E
Description
An account of the resource
Although constructivism has generated much theoretical discussion in the mental health disciplines, its implications for clinic conceptualization, assessment, and treatment have been less systematically explored. The authors attempt to remedy this shortcoming by extending a narrative account of post-traumatic stress and illustrating its applicability in the context of an extended case study. They conclude that a narrative perspective on the traumatic disruption of self-identity holds promise for clinicians at both the heuristic and applied levels.
1996
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1606/1044-3894.933" target="_blank" rel="noreferrer">10.1606/1044-3894.933</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).
Type
The nature or genre of the resource
Journal Article
1996
Backlog
Families In Society
Grief
Health
Journal Article
Narrative
Neimeyer RA
Stewart Alan E
Stress
-
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
Backlog
URL Address
<a href="http://doi.org/10.7326/0003-4819-134-1-200101020-00024" target="_blank" rel="noreferrer">http://doi.org/10.7326/0003-4819-134-1-200101020-00024</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
Narrative medicine: Form, function, and ethics
Publisher
An entity responsible for making the resource available
Annals Of Internal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
medicine; narrative
Creator
An entity primarily responsible for making the resource
Charon R
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.7326/0003-4819-134-1-200101020-00024" target="_blank" rel="noreferrer">10.7326/0003-4819-134-1-200101020-00024</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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2001
2001
Annals Of Internal Medicine
Backlog
Charon R
Journal Article
Medicine
Narrative
-
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
Oncology
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 2017 List
URL Address
<a href="http://doi.org/10.1080/07347332.2016.1147913" target="_blank" rel="noreferrer">http://doi.org/10.1080/07347332.2016.1147913</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
"His ears are so soft!" Animal-assisted interventions in oncology settings: Implications for oncology social work practice
Publisher
An entity responsible for making the resource available
Journal Of Psychosocial Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Clinical Practice; Ear; Oncology; Skill; Social Work Practice; 50-56-6 (oxytocin); 51-61-6 (dopamine); 62-31-7 (dopamine); 54577-94-5 (oxytocin); 60118-07-2 (endorphin); Adult; Animal Experiment; Animal Model; Anxiety; Blood Pressure; Cancer Patient; Cancer Therapy; Cerebrovascular Accident; Distress Syndrome; Dog; Dopamine; Endogenous Compound; Endorphin; Family Study; Female; Gene Expression; Happiness; Heart Rate; Hospice; Hospital Patient; Human; Human Versus Animal Comparison; Infusion; Male; Narrative; Nonhuman; Oxytocin; Pain; Palliative Therapy; Pet Therapy; Program Development; Recreation; Social Support; Storytelling; Symptom; Total Quality Management; Trust; Volunteer; Waiting Room
Creator
An entity primarily responsible for making the resource
Bach C
Description
An account of the resource
Content: The use of recreational, expressive, and integrative methods of providing supportive care to patients and families coping with cancer is growing in cancer treatment settings. One such method is animal-assisted interventions (AAI). From the clinic to the infusion suite, to the palliative care office, and to the inpatient hospice, the presence of therapy animals provides an another layer of therapeutic intervention to assist in coping with cancer. AAI can provide cancer patients with an opportunity for emotional support, diversion, recreation, sensory integration/tactile benefit, social support, companionship, and relief of distress and symptoms including pain, depression, anxiety, and isolation. Research also suggests that the simple act of petting a dog can lower heart rate and blood pressure (Friedman, 2015), as well as increase levels of oxytocin, dopamine, and endorphins (Uyemura, 2013). Oxytocin influences happiness and trust in individuals. "Oxytocin has some powerful effects for us in the body's ability to be in a state of readiness to heal.so it predisposes us to an environment in our bodies where we can be healthier" (http://www.npr.org/sections/health-shots/2012/03/09/146583986/ pet-therapy-how-animals-and-humans-heal-each-other). In addition, the therapy animal serves as a vehicle of communication, narrative, and storytelling. Imagine a patient sitting anxiously in the waiting room. He or she strokes the therapy dog gently and is taken to another time and place without cancer. He or she reflects on his or her own dog's roles in his or her life, how he or she rescued the dog, plays with the dog, sleeps with the dog. He or she is distracted, relaxed, and utilizing his or her own story to invoke feelings of happiness, normalcy, and hope. This presentation will examine the history, function, and roles of animal-assisted therapy and activities in various settings. The benefits of AAI with cancer patients (both adults and children) as well as with oncology professionals will also be presented. AAI as a method of integrative supportive oncology therapy will be addressed. The benefits of AAI as well as barriers and limitations for these programs in oncology settings will be reviewed. We will explore AAI program development and evaluation through presentation of results from quality improvement surveys completed by program participants. Suggestions for program development, volunteer recruitment and retention, and therapy dog support will also be discussed. Case presentations of AAI in action from various oncology settings will be a highlight of this presentation.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/07347332.2016.1147913" target="_blank" rel="noreferrer">10.1080/07347332.2016.1147913</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).
2016
50-56-6 (oxytocin)
51-61-6 (dopamine)
54577-94-5 (oxytocin)
60118-07-2 (endorphin)
62-31-7 (dopamine)
Adult
Animal Experiment
Animal Model
anxiety
Bach C
Blood Pressure
Cancer Patient
Cancer Therapy
Cerebrovascular Accident
Clinical Practice
Distress Syndrome
Dog
Dopamine
Ear
Endogenous Compound
Endorphin
Family Study
Female
Gene Expression
Happiness
Heart Rate
Hospice
Hospital Patient
Human
Human Versus Animal Comparison
Infusion
Journal Of Psychosocial Oncology
Male
Narrative
Nonhuman
Oncology
Oncology 2017 List
Oxytocin
Pain
Palliative Therapy
Pet Therapy
Program Development
Recreation
Skill
Social Support
Social Work Practice
Storytelling
Symptom
Total Quality Management
Trust
Volunteer
Waiting Room