1
40
15
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Title
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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
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<a href="http://doi.org/10.1111/j.1365-2788.2009.01183.x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/j.1365-2788.2009.01183.x</a>
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Title
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Self-injurious behaviour in Cornelia de Lange syndrome: 2. association with environmental events
Publisher
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Journal of Intellectual Disability Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
intervention; symptoms; children; Rehabilitation; Neurology; Education & Educational Research; prevalence; Genetics & Heredity; behavioural phenotype; brachmann-delange syndrome; Cornelia de Lange syndrome; descriptive analysis; functional-analysis; individuals; Neurosciences &; phenomenology; phenotype; prader-willi syndrome; Psychiatry; self-injurious behaviour; social reinforcement; behavioral problems; De Lange syndrome; psychological intervention; environmental conditions; demand denial no contact; environment; self-injury
Creator
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Sloneem J; Arron K; Hall S; Oliver C
Description
An account of the resource
Background Self-injurious behaviour is commonly seen in Cornelia de Lange syndrome (CdLS). However, there has been limited research into the aetiology of self-injury in CdLS and whether environmental factors influence the behaviour. Methods We observed the self-injury of 27 individuals with CdLS and 17 participants who did not have CdLS matched for age, gender, level of intellectual disability and mobility. Descriptive analyses were used to determine the extent to which environmental events were associated with self-injury. Results Lag sequential analysis of the association between self-injurious behaviour and environmental events revealed no differences between the two groups in terms of either the number or degree of environmental associations. Conclusions The results suggest that the associations between the environment and self-injury in CdLS do not differ from those seen in the broader population of people with intellectual disability. By implication the social reinforcement hypothesis is equally applicable to both groups.
Identifier
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<a href="http://doi.org/10.1111/j.1365-2788.2009.01183.x" target="_blank" rel="noreferrer noopener">10.1111/j.1365-2788.2009.01183.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).
2009
Arron K
behavioral problems
behavioural phenotype
brachmann-delange syndrome
Children
Cornelia de Lange syndrome
De Lange syndrome
demand denial no contact
descriptive analysis
Education & Educational Research
Environment
environmental conditions
functional-analysis
Genetics & Heredity
Hall S
INDIVIDUALS
Intervention
Journal Of Intellectual Disability Research
Neurology
Neurosciences &
Oliver C
Phenomenology
Phenotype
prader-willi syndrome
Prevalence
Psychiatry
psychological intervention
Rehabilitation
self-injurious behaviour
self-injury
Sloneem J
social reinforcement
Symptoms
-
Dublin Core
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Title
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August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1016/j.pedn.2023.05.013" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.pedn.2023.05.013</a>
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Title
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A qualitative phenomenological study of nurses' experiences in caring for infants and children with life-limiting and life-threatening conditions
Publisher
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Journal of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Infant; article; female; human; male; emotion; interview; psychologist; human experiment; nurse; avoidance behavior; qualitative research; neonatal intensive care unit; infant; phenomenology; care behavior; nursing care; physiological stress; child care; pediatric nursing; emotional intelligence
Creator
An entity primarily responsible for making the resource
Bassola B; Cilluffo S; Ongari E; Terzoni S; Targa A; Destrebecq A; Lusignani M
Description
An account of the resource
Abstract Purpose: To understand the experience of nurses caring for infants and children with life limiting and life-threatening conditions. Design and methods: A qualitative phenomenological study was conducted, collecting data through deep interviews. Sample included twenty-seven nurses working in paediatric and neonatal intensive care units. Results: Four themes emerged: suffering, being there, protect yourself and support. The experience of caring for children with limiting and life-threatening conditions affects nurses positively, with personal and professional gratification, but also negatively, as it leads to the development of compartmentalization, avoidance, and high levels of stress. Conclusions: The organization should make resources available to help nurses build resilience, improve emotional intelligence, and process experiences and emotions, thereby bringing benefits and improvements in infant and childcare. Practice implications: Comparison between colleagues is one of the most effective tools for supporting each other. Dedicated times and spaces to be able to carry out the debriefings managed by the nurses themselves, guided and mediated by an expert figure, such as a psychologist or a trainer, would be recommended.
Identifier
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<a href="http://doi.org/10.1016/j.pedn.2023.05.013" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2023.05.013</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Article
August List 2024
avoidance behavior
Bassola B
care behavior
Child
Child Care
Cilluffo S
Destrebecq A
Emotion
Emotional Intelligence
Female
Human
Human Experiment
Infant
Interview
Journal of Pediatric Nursing
Lusignani M
Male
Neonatal Intensive Care Unit
Nurse
Nursing Care
Ongari E
Pediatric Nursing
Phenomenology
Physiological stress
Psychologist
Qualitative Research
Targa A
Terzoni S
-
Dublin Core
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Title
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February 2024 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
February List 2024
URL Address
<a href="http://doi.org/10.1186/s12904-023-01307-0" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01307-0</a>
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Title
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A shared decision-making model in pediatric palliative care: a qualitative study of healthcare providers
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; adult; article; controlled study; human; male; palliative therapy; knowledge; health care personnel; physician; qualitative research; social worker; phenomenology; decision making; semi structured interview; nurse; shared decision making; conceptual model; family centered care; pharmaceutics
Creator
An entity primarily responsible for making the resource
Cai S; Cheng L; Wang R; Zhou X; Peng X
Description
An account of the resource
Pediatric shared decision-making (SDM) is a fundamental part of family-centered care. Pediatric palliative care (PPC) is one of the more difficult fields for healthcare providers when choosing to utilize SDM. However, to our knowledge, there are still few structured approaches of SDM in PPC. We aimed to build a model of SDM in PPC that achieves better care and outcomes for children and their family members. Methods: This study is a descriptive phenomenology study. Participants included physicians, nurses, and social workers in the PPC team. Participants were individually interviewed face-to-face or via an online meeting software. Data were collected in semi-structured interviews and analyzed using a thematic framework analysis. Results: In total, 27 healthcare providers were interviewed. The model of SDM in PPC identified three themes, including the participants, the principle and the process of SDM. Decision participants involved the children, parents, the PPC team and others. The decision principle had three sub-themes including type, standard and precondition. The decision process describes the fundamental process of SDM and provides suggestions for mobilizing patients and parents to engage in decision-making and seeking conflict resolution. Conclusions: This is the first study to develop a SDM model in PPC. This model can provide guidance to PPC teams on SDM practices. In addition, the model contributes to the existing body of knowledge by providing a conceptual model for SDM in the context of PPC.
Identifier
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<a href="http://doi.org/10.1186/s12904-023-01307-0" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01307-0</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adult
Article
BMC Palliative Care
Cai S
Cheng L
Child
conceptual model
Controlled Study
Decision Making
Family Centered Care
February List 2024
Health Care Personnel
Human
Knowledge
Male
Nurse
Palliative Therapy
Peng X
pharmaceutics
Phenomenology
Physician
Qualitative Research
Semi Structured Interview
shared decision making
Social Worker
Wang R
Zhou X
-
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Title
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2023 Special Edition 2 - Parent Perspectives List
Text
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Citation List Month
2023 SE2 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1207/s15326888chc2401_5" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1207/s15326888chc2401_5</a>
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Title
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The experience and perceptions of siblings of pediatric intensive care unit patients: A qualitative study
Publisher
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Children's Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Family; Hospital Discharge; Intensive Care; Pandemics; Pediatrics; Phenomenology; Post PICU outcomes; Sibling experience; Siblings; Trauma
Creator
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Christie LM
Description
An account of the resource
Over 200,000 patients are admitted into pediatric intensive care units (PICU) annually in North America, exposing families to extreme psychosocial stressors and adverse outcomes. While previous research has shown PICU patients and their parents experience post-traumatic stress disorder, few studies have addressed post-PICU outcomes in siblings and siblings' voices of their own experience are absent from the literature.The purpose of this study was to understand the experiences of school aged and adolescent siblings, ages six to 17 years, whose brother or sister experienced admission to a PICU due to a critical illness or injury. Interpretive phenomenology was used to gain an in-depth understanding of the experiences and perceptions of the lived experiences of siblings of PICU patients. Seven participants were identified from a list of families whose child was in the PICU at Dell Children's Medical Center within the past two years and discharged from the hospital for three months or longer. Families were screened for the presence of siblings in the household and for additional inclusion and exclusion criteria before being approached for to participate in the study. Those families meeting criteria received a study information letter and follow up phone call inviting them to participate and providing contact information for the researcher if they wanted to receive further information on the study. Data collection consisted of demographic information to describe the sample and semi-structured interviews to address the research questions. Interviews were conducted either face-to-face prior to the COVID-19 pandemic or by videoconference during the pandemic, and audio recorded and then transcribed word-for-word. Data analysis and interpretation utilized Colaizzi's methodology and Merleau-Ponty's Phenomenology of Perception (2012). Four themes emerged from the data: What I Remember; What I Felt; What Helped; and What's the Same and What's Different. (PsycInfo Database Record (c) 2022 APA, all rights reserved)
Identifier
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<a href="http://doi.org/10.1207/s15326888chc2401_5" target="_blank" rel="noreferrer noopener">10.1207/s15326888chc2401_5</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
2023 SE2 - Parent Perspectives
Children's Health Care
Christie LM
Family
hospital discharge
Intensive Care
Pandemics
Pediatrics
Phenomenology
Post PICU outcomes
Sibling experience
Siblings
Trauma
-
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Title
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May 2023 List
Text
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Citation List Month
May List 2023
URL Address
<a href="http://doi.org/10.1177/13674935221147716" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935221147716</a>
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Title
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A team around the child' professionals' experiences of unmet needs, access and expectations in children's palliative care services, a phenomenological study in the UK
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
expectation; palliative nursing; pediatrics; phenomenology; respite care; anxiety; article; care behavior; child; Child; genetic transcription; human; Only Child; Palliative Care; responsibility; semi structured interview
Creator
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Constantinou G; Cook EJ; Tolliday E; Randhawa G
Description
An account of the resource
This study aims to understand the experiences of professionals involved in caring for families of children with life-limiting illnesses to ascertain unmet needs, access issues and expectations of services.A phenomenological approach comprising semi-structured interviews with professionals from various services was used. Interviews that happened between July and November 2018 were audio-recorded, transcribed verbatim and thematically analysed based on descriptive phenomenology.In total, 29 interviews were conducted. Findings showed how essential collaborative working was for becoming a team around the child. Barriers to this include complex working relationships, overprotectiveness of families, roles and responsibilities and use of independent care records. The pressures of waiting times and the impact of staffing shortages affected the experiences of providing care. The reality of meeting families' expectations was shaped by family networking, online research and previous services resistance, which was influential in more challenging interactions. Expectations of care were also impacted by misunderstandings and anxieties surrounding access to services. Overall, professionals were concerned about families being used as a bottomless caring resource and stressed the need for short breaks to alleviate parents.Interventions that educate families and professionals on these services and how they can benefit the child and family would be well received.
Identifier
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<a href="http://doi.org/10.1177/13674935221147716" target="_blank" rel="noreferrer noopener">10.1177/13674935221147716</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
anxiety
Article
care behavior
Child
Constantinou G
Cook EJ
Expectation
genetic transcription
Human
Journal Of Child Health Care
May List 2023
Only Child
Palliative Care
palliative nursing
Pediatrics
Phenomenology
Randhawa G
Respite Care
responsibility
Semi Structured Interview
Tolliday E
-
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 2016 List
Dublin Core
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Title
A name given to the resource
“have No Regrets:” Parents’ Experiences And Developmental Tasks In Pregnancy With A Lethal Fetal Diagnosis.
Publisher
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Social Science & Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adult; Choice Behavior; Emotions; Female; Fetal Diseases/diagnosis; Fetal Diseases/mortality; Humans; Infant; Longitudinal Studies; Male; Middle Aged; Needs Assessment; Palliative Care; Parents/psychology; Perinatal Care; Pregnancy; Prenatal Diagnosis/psychology; Qualitative Research; Young Adult
Developmental Task; Lethal Fetal Diagnosis; Longitudinal; Perinatal Palliative Care; Phenomenology; Pregnancy; Prenatal Diagnosis; Usa
Creator
An entity primarily responsible for making the resource
Cote-Arsenault D; Denney-Koelsch E
Description
An account of the resource
SIGNIFICANCE:
Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological and developmental processes are altered.
METHODS:
This longitudinal phenomenological study of 16 mothers and 14 fathers/partners sought to learn the experiences and developmental needs of parents who continue their pregnancy despite the lethal diagnosis. The study was guided by Merleau-Ponty's philosophic view of embodiment. Interviews (N = 90) were conducted with mothers and fathers over time, from mid-pregnancy until 2-3 months post birth. Data analysis was iterative, through a minimum of two cycles of coding, theme identification, within- and cross-case analysis, and the writing of results.
RESULTS:
Despite individual differences, parents were quite consistent in sharing that their overall goal was to "Have no regrets" when all was said and done. Five stages of pregnancy were identified: Pre-diagnosis, Learning Diagnosis, Living with Diagnosis, Birth & Death, and Post Death. Developmental tasks of pregnancy that emerged were 1) Navigating Relationships, 2) Comprehending Implication of the Condition, 3) Revising Goals of Pregnancy, 4) Making the Most of Time with Baby, 5) Preparing for Birth and Inevitable Death, 6) Advocating for Baby with Integrity, and 7) Adjusting to Life in Absence of Baby. Prognostic certainty was found to be highly influential in parents' progression through developmental tasks.
CONCLUSION:
The framework of parents' pregnancy experiences with lethal fetal diagnosis that emerged can serve as a useful guide for providers who care for families, especially in perinatal palliative care. Providing patient-centered care that is matched to the stage and developmental tasks of these families may lead to improved care and greater parent satisfaction.
Identifier
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DOI: 10.1016/j.socscimed.2016.02.033
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Adult
Choice Behavior
Côté-Arsenault D
Denney-Koelsch E
Developmental Task
Emotions
Female
Fetal Diseases/diagnosis
Fetal Diseases/mortality
Humans
Infant
Lethal Fetal Diagnosis
Longitudinal
Longitudinal Studies
Male
March 2016 List
Middle Aged
Needs Assessment
Palliative Care
Parents/psychology
Perinatal Care
Perinatal Palliative Care
Phenomenology
Pregnancy
Prenatal Diagnosis
Prenatal Diagnosis/psychology
Qualitative Research
Social science & medicine
Usa
Young Adult
-
Dublin Core
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.12968/ijpn.2023.29.4.188" target="_blank" rel="noreferrer noopener"> http://doi.org/10.12968/ijpn.2023.29.4.188</a>
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Title
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Nurses' effort for providing end-of-life care in paediatric oncology: a phenomenological study
Publisher
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International Journal of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Terminal Care; childhood cancer; terminal care; article; female; human; male; palliative therapy; clinical article; personal experience; nurse; care behavior; phenomenology; analgesia; honesty; oncology nurse; psychotrauma
Creator
An entity primarily responsible for making the resource
Ghaljeh M; Rezaee N; Mardani-Hamooleh M
Description
An account of the resource
BACKGROUND: Many children with cancer are hospitalised before the end of life and need special care. To improve the delivery of care for children, it is necessary to understand the insights, emotions and feelings of nurses. AIM: This study aimed to explore the lived experiences of nurses providing end-of-life care for children with cancer. <br/>METHOD(S): A phenomenological hermeneutic approach was used to analyse the experience of 14 oncology nurses working in a children's hospital who were caring for children with cancer. FINDINGS: Three themes and seven subthemes emerged from the analysis. The three main themes were: pain management (relieving physical pain and reducing the mental pain of the child and family); respect-based care (for the values and beliefs of the child and family and honesty in providing information to them); and negative reflections of care (psychological trauma, cultural challenges and futile care). <br/>CONCLUSION(S): The results of the present study showed that, despite the problems experienced by the nurses, they were still trying to provide life-sustaining care for children with cancer.
Identifier
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<a href="http://doi.org/10.12968/ijpn.2023.29.4.188" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2023.29.4.188</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2023 SE3 - Oncology
Analgesia
Article
care behavior
Child
Childhood Cancer
Clinical Article
Female
Ghaljeh M
Honesty
Human
International Journal of Palliative Nursing
Male
Mardani-Hamooleh M
Nurse
oncology nurse
Palliative Therapy
Personal Experience
Phenomenology
psychotrauma
Rezaee N
Terminal Care
-
Dublin Core
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Title
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February 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
February 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.042" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.042</a>
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Title
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Exploring Resident Physicians' Experiences Practicing in Pediatric Palliative Care: A Hermeneutic Method of Inquiry
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
death; grief; semi structured interview; pediatrics; palliative therapy; student; personal experience; resident; medical education; data analysis; genetic transcription; conference abstract; human; child; controlled study; perception; guilt; qualitative research; phenomenology; chronic patient; rotation
Creator
An entity primarily responsible for making the resource
Johnson A; Siden H; Charles G
Description
An account of the resource
Objectives: The experiences of medical residents during training in pediatric palliative care has recently become an area of focus within medical education literature. Residents' medical knowledge, skill development, and comfort in clinical practice in palliative care have all been investigated within recent studies. However, the current body of literature in this area is limited and under-developed as it has neglected the human experience of caring for children with life-limiting diseases. The primary objective of this study is to widen the understanding of pediatric residents who have completed training in pediatric palliative care.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.042" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.042</a>
2018
Charles G
Child
Chronic Patient
conference abstract
Controlled Study
Data Analysis
Death
February 2019 List
genetic transcription
Grief
Guilt
Human
Johnson A
Journal of Pain and Symptom Management
Medical Education
Palliative Therapy
Pediatrics
Perception
Personal Experience
Phenomenology
Qualitative Research
Resident
Rotation
Semi Structured Interview
Siden H
Student
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1177/02692163231180926" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163231180926</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
"They were here, and they still matter": A qualitative study of bereaved parents legacy experiences and perceptions
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; United States; Bereavement; adult; article; human; palliative therapy; grief; young adult; sibling; quality of life; epistemology; qualitative research; language; phenomenology; caregiver; perception; genetic transcription; semi structured interview; ritual; altruism
Creator
An entity primarily responsible for making the resource
Jones MT; Albanese E; Boles JC
Description
An account of the resource
BACKGROUND: Legacy building interventions are used in pediatric healthcare settings to help families cope with difficult healthcare experiences and typically reserved for intentional use at or near the end of a child's life. However, little is known about how bereaved families perceive the concept of legacy that these practices are meant to address. Emerging research challenges the view of legacy as a standardized, handheld keepsake item but rather as a summation of qualities and experiences that affect those left behind. Therefore, more research is needed. AIM: To explore the legacy perceptions and experiences of bereaved parents/caregivers in an effort to inform legacy-oriented interventions in pediatric palliative care. DESIGN: In this qualitative, phenomenological study grounded in social constructionist epistemology, bereaved parent/caregivers completed a semi-structured interview about their legacy perceptions and experiences. The interviews were audio-recorded, transcribed, and analyzed using an inductive, open coding approach grounded in psychological phenomenology. SETTING/PARTICIPANTS: Participants were parents/caregivers and one adult sibling of children (ages 6months-18years) that died between 2000 and 2018 at a children's hospital in the Southeastern United States and spoke English as their primary language. <br/>RESULT(S): Sixteen parents/caregivers and one adult sibling were interviewed. Participants' responses converged across three themes: (1) definitions of legacy, including traits and characteristics, impacts on others, and the child's enduring presence; (2) manifestations of legacy, such as tangible items, experiences, traditions, and rituals, and altruism; and (3) factors perceived to affect legacy experiences, including characteristics of the child's death and one's personal grief process. <br/>CONCLUSION(S): Bereaved parents/caregivers define and experience their child's legacy in ways and manifestations that conflict with current legacy building interventions used in pediatric healthcare settings. Thus, an immediate shift from standardized legacy-oriented care to individualized assessment and intervention is needed to provide high-quality patient- and family-centered pediatric palliative care.
Identifier
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<a href="http://doi.org/10.1177/02692163231180926" target="_blank" rel="noreferrer noopener">10.1177/02692163231180926</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adult
Albanese E
Altruism
Article
August List 2035
Bereavement
Boles JC
Caregiver
Child
epistemology
genetic transcription
Grief
Human
Jones MT
Language
Palliative Medicine
Palliative Therapy
Perception
Phenomenology
Qualitative Research
Quality Of Life
ritual
Semi Structured Interview
Sibling
United States
Young Adult
-
Dublin Core
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Title
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May 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
May List 2023
URL Address
<a href="http://doi.org/10.1017/S1478951523000147" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S1478951523000147</a>
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Title
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Evaluating a novel hospital-based online health community to address palliative and psychosocial care factors for chronically ill adolescent and young adult patients
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Palliative and Supportive Care
Date
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2023
Subject
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chronic patient; palliative therapy; psychosocial care; Adolescent; adult; article; Chronic Disease; clinical article; controlled study; data analysis; expectation; female; human; interview; male; personal experience; phenomenology; qualitative analysis; questionnaire; solidarity; young adult
Creator
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LeBeau K; Collins S; Zori G; Walker D; Marchi E; Pomeranz JL; Hart M
Description
An account of the resource
OBJECTIVES: Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial care. AYAs who receive palliative and psychosocial care experience numerous benefits from these services. However, we still lack research investigating age-appropriate programs targeting AYAs' psychosocial needs that are delivered virtually and extend beyond the hospital setting. Streetlight is a palliative care program designed for chronically ill AYAs that offers the Streetlight Gaming League (SGL), an online health community (OHC) combining peer-based support, online gaming, and community events. We evaluated the usefulness, acceptability, and potential effectiveness of SGL through an assessment of chronically ill AYAs' lived experiences. <br/>METHOD(S): We used a qualitative evaluation approach grounded in hermeneutic phenomenology. Questionnaires and interviews were conducted with 9 chronically ill AYAs to elicit in-depth accounts of their lived experiences of using SGL. Descriptive statistical analysis was performed on questionnaire data. Phenomenological data analysis, informed by hermeneutic analysis, was used to analyze interviews. <br/>RESULT(S): AYAs reported positive experiences with SGL and valued the ability to engage in various content while having few participation expectations. They also described psychosocial benefits, including reprieve from illness, sense of community, and solidarity through mutual understandings and shared experiences. SIGNIFICANCE OF THE RESULTS: Findings highlight the usefulness and acceptability of a virtual palliative psychosocial care program for chronically ill AYAs. Findings also suggest the effectiveness of SGL and support using an OHC to meet the psychosocial needs of AYAs. This study can guide future programming and implementation of online palliative psychosocial care programs in other hospital settings, resulting in similar beneficial and meaningful experiences.
Identifier
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<a href="http://doi.org/10.1017/S1478951523000147" target="_blank" rel="noreferrer noopener">10.1017/S1478951523000147</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adolescent
Adult
Article
Chronic Disease
Chronic Patient
Clinical Article
Collins S
Controlled Study
Data Analysis
Expectation
Female
Hart M
Human
Interview
Lebeau K
Male
Marchi E
May List 2023
Palliative And Supportive Care
Palliative Therapy
Personal Experience
Phenomenology
Pomeranz JL
psychosocial care
Qualitative Analysis
Questionnaire
solidarity
Walker D
Young Adult
Zori G
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1002/pbc.27455</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Care with love: Parents' experiences in caring their child with cancer under palliative care
Publisher
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Pediatric Blood and Cancer
Date
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2018
Subject
The topic of the resource
caregiver; palliative therapy; nurse; data analysis; malignant neoplasm; fatigue; sibling; conference abstract; human; child; female; male; interview; clinical article; daily life activity; uncertainty; primary medical care; phenomenology; fear; jealousy
Creator
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Nafratilova M; Allenidekania A; Wanda D
Description
An account of the resource
Background/Objectives: Bereaved parents during palliative care affects the quality of life of children and family. This research aims to explore parents' experiences caring children with cancer in palliative condition. Design/Methods: The research applied descriptive qualitative phenomenology design. Data collection was conducted through an in-depth interview involving ten parents as participants, while data analysis used was Colaizzi method Results: The eight themes were identified as caring with love, continuity of fighting, mixed-up feeling, changes of life, being a caregiver for a child, caring children not easy, trying to be normal parents, and seeking help. Parents took care of their children with love by making them comfortable, using love in caring their child, standing by their child, and caring by oriented on their child. The parents shown that they tried to be tough and to keep fighting in caring their child. Mixed-up feelings were worry, uncertainty, sad, fear, fatigue, ignored feeling and isolated feeling, happy, calm, and touched described by the parents. Parents felt negative changes such as to change their daily activities and to limit the other activities. Their found difficulty to care and communicate with their child, financial problem, limitation of time, less support from their family, and jealousy from the sibling. But parents also give the best for their child, and tried to treated their child as normal as the other children. Conclusions: Parents care their child with love even though they feel mixed feelings, difficulty, and changes in their life during palliative care. They need comprehensive support in playing roles as a primary care giver for their child caring with love. Nurses and all health care professionals involved are expected to be able to cooperate in providing palliative care that is comprehensive and continuous to the children and parents.
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<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
2018
Allenidekania A
Caregiver
Child
Clinical Article
conference abstract
daily life activity
Data Analysis
Fatigue
Fear
Female
Human
Interview
jealousy
Male
Malignant Neoplasm
Nafratilova M
Nurse
Oncology 2018 List
Palliative Therapy
Pediatric Blood and Cancer
Phenomenology
primary medical care
Sibling
Uncertainty
Wanda D
-
Dublin Core
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Title
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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
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URL Address
<a href="http://doi.org/10.1007/s10882-012-9329-6" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s10882-012-9329-6</a>
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Title
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Behavior Problems in Individuals with Cornelia de Lange Syndrome: Population-Specific Validation of the Behavior Problem Inventory-01
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Journal of Developmental and Physical Disabilities
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
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reliability; Rehabilitation; Intellectual disabilities; behavior; validity; prevalence; phenomenology; delange-syndrome; intellectual disabilities; Aggressive/destructive behavior; behaviors; Cornelia de Lange Syndrome; repetitive; scale; Self-injurious; self-injurious-behavior; short form; Stereotyped behavior; behavioral problems; De Lange syndrome; trajectory; characteristics
Creator
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Rojahn J; Barnard-Brak L; Richman D; Dotson W; Medeiros K; Wei T L; Abby L
Description
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The purpose of this study was to validate the Behavior Problem Inventory-01 (BPI-01; Rojahn J Autism Dev Disord 31:577-588, 2001) in a population of 179 individuals with Cornelia de Lange Syndrome (CdLS) and to extend the literature on the behavioral phenotype of individuals with CdLS. We also set out to determine the relationship between the frequency of self-injurious behavior (SIB), stereotyped behavior, and aggressive/destructive behavior topographies with the level of intellectual disability (ID). The BPI-01 among the individuals with CdLS showed a sufficient factor structure and internal consistency of each of the three assessed construct (SIB, stereotyped behavior, and aggressive/destructive behaviors). Similar to the findings in other populations with intellectual disabilities, those with severe/profound intellectual impairment exhibited significantly more frequent SIB and stereotypic behavior than those with moderate or mild intellectual impairment or average intellectual abilities while no statistically a differences were noted for aggressive behavior across levels of intellectual impairment. There is a need for uniformity of assessment tools across different study to improve our ability to compare results across different prevalence studies.
Identifier
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<a href="http://doi.org/10.1007/s10882-012-9329-6" target="_blank" rel="noreferrer noopener">10.1007/s10882-012-9329-6</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2013
Abby L
Aggressive/destructive behavior
Barnard-Brak L
Behavior
behavioral problems
behaviors
characteristics
Cornelia de Lange syndrome
De Lange syndrome
delange-syndrome
Dotson W
Intellectual disabilities
Journal of Developmental and Physical Disabilities
Medeiros K
Phenomenology
Prevalence
Rehabilitation
Reliability
repetitive
Richman D
Rojahn J
Scale
Self-injurious
self-injurious-behavior
short form
Stereotyped Behavior
Trajectory
Validity
Wei T L
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2017 List
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Title
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A Sociocultural Approach to Children's Perceptions of Death and Loss.
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Omega: Journal Of Death & Dying
Date
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2017
Subject
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Death; Prevention; Anxiety; Bereavement; Child Development; Cognition; Content Analysis (communication); Drawing; Emotions (psychology); Fear; Grief; Interviewing; Phenomenology; Attitudes Toward Death; Social Context; Thematic Analysis
Death; Drawings; Loss; Phenomenography; Young Children
Creator
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Sungeun Y; Soyeon P
Description
An account of the resource
By employing the phenomenographic approach, the present study explored children's cognitive understanding of and emotional responses to death and bereavement. Participants included 52 Korean, 16 Chinese, and 16 Chinese American children ages 5-6. Thematic analysis of children's drawings and open-ended interviews revealed that most children associated death with negative emotions such as fear, anxiety, and sadness. The majority of children used realistic expressions to narrate death. The core themes from their drawings included causes for death, attempts to stop the dying, and situations after death. This study contributes to the literature by targeting young children who have been relatively excluded in death studies and provides evidence in the usefulness of drawings as a developmentally appropriate data collection tool. The findings also enrich our knowledge about children's understanding of death and bereavement, rooted in the inductive analysis of empirical data with children from culturally diverse backgrounds.
Identifier
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<a href="http://doi.org/10.1177/0030222817693138" target="_blank" rel="noreferrer">10.1177/0030222817693138</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
anxiety
Attitudes Toward Death
Bereavement
Child Development
Cognition
Content Analysis (communication)
Death
December 2017 List
Drawing
Drawings
Emotions (psychology)
Fear
Grief
Interviewing
Loss
Omega: Journal Of Death & Dying
Phenomenography
Phenomenology
Prevention
Social Context
Soyeon P
Sungeun Y
Thematic Analysis
Young Children
-
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 2024 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 List 2024
URL Address
<a href="http://doi.org/10.1136/bmjopen-2023-075740" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjopen-2023-075740</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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Shepherding parents to prepare for end-of-life decision-making: a critical phenomenological study of the communication approach of paediatricians caring for children with life-limiting conditions in Australia
Publisher
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BMJ Open
Date
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2023
Subject
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Australia; care behavior; decision making; interpersonal communication; parent; pediatrician; phenomenology; article; child; courage; human; interview; male; palliative therapy; shared decision making; signal transduction; simulation
Creator
An entity primarily responsible for making the resource
Vemuri S; Hynson J; Williams K; O'Neill J; Gillam L
Description
An account of the resource
Background/objectives: Shared decision-making is widely accepted as the best approach for end-of-life decision-making for children with life-limiting conditions. Both paediatricians and parents find benefit in preparing for such decisions. However, little detail is known about this preparatory process. This study aims to explore how paediatricians prepare parents for end-of-life decision-making for a child with a life-limiting condition using clinical simulation. Design: Individual, semistructured, post-simulation qualitative interviews of paediatricians and parent-actors. Setting: Acute intensive and long-term outpatient paediatric care in Victoria, Australia. Participants: 18 purposively sampled paediatricians who treat children with life-limiting conditions and the two parent-actors involved in all simulations. Paediatricians were excluded if they assisted in the study design, worked within specialist palliative care teams or did not provide clinical care outside the neonatal period. Results: Three key themes in a preparatory process (termed 'shepherding') were identified: (1) paediatricians aim to lead parents along a pathway to future end-of-life decisions, (2) paediatricians prefer to control the pace of these discussions and (3) paediatricians recognise they need to have courage to face risk with this preparation. Paediatricians use a variety of shepherding strategies to influence the pace, content and framing of discussions, which may help prepare parents to make the best end-of-life treatment decisions when the time comes. Conclusions: Shepherding is a newly identified, subtle process intended to influence parents by guiding their understanding of their child's health and potential suffering in advance of decision-making. Shepherding does not fit within current descriptions of physicians' decision-making influence. Paced reflection, thinking and provision of information are shepherding strategies preferred by paediatricians, and these appear the same regardless of whether paediatricians intend to steer parents towards particular treatment decisions or simply prepare them for the process of decision-making. Further study about the intention of this influence and parental perception of this communication is needed.
Identifier
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<a href="http://doi.org/10.1136/bmjopen-2023-075740" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2023-075740</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Article
Australia
Bmj Open
care behavior
Child
courage
Decision Making
Gillam L
Human
Hynson J
Interpersonal Communication
Interview
Male
March List 2024
O'Neill J
Palliative Therapy
Parent
Pediatrician
Phenomenology
shared decision making
Signal Transduction
Simulation
Vemuri S
Williams K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
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/10.1111/ecc.13061" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/ecc.13061</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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The experience of parents living with a child with cancer at the end of life
Publisher
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European Journal of Cancer Care (Engl)
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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end of life; paediatric cancer; parents; phenomenology
Creator
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Wang S C; Wu L M; Yang Y M; Sheen J M
Description
An account of the resource
The study was to describe the essence of the lived experience of parents with a child with incurable cancer at the end of life (EOL). A descriptive phenomenological study was conducted with ten parents of children with incurable cancer in a medical centre in Taiwan. Data were collected from in-depth interviews and were analysed according to the method of Giorgi. Two major themes emerged: (a) immersion in the struggling and suffering, which included conflicts and arguments, witnessing their child suffering, denying their child being at EOL and waiting for a miracle; and (b) acceptance of death, which included an end to suffering, living in the moment, discussion of death and letting go. Parents had difficulty adapting to a palliative care perspective due to their misconception that this meant giving up on their child. In addition, religion and belief played varied and important roles in the lived experience of these parents with a child with incurable cancer. Healthcare providers must address the core value of palliative care and help parents accept the reality of their child's situation at an earlier stage in order to provide a better quality of life for the child.
Identifier
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<a href="http://doi.org/10.1111/ecc.13061" target="_blank" rel="noreferrer noopener">10.1111/ecc.13061</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
End Of Life
European Journal of Cancer Care (Engl)
Oncology 2019 List
Paediatric cancer
Parents
Phenomenology
Sheen J M
Wang S C
Wu L M
Yang Y M