1
40
49
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Title
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April 2024 List
Text
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April List 2024
URL Address
<a href="http://doi.org/10.3390/clinpract14010010" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/clinpract14010010</a>
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Title
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The Psychological Experience of Grandparents: Proposal of a Qualitative Clinical Assessment Tool in Pediatric Palliative Care
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Clinics and Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
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child; Palliative Care; article; female; human; male; social support; palliative therapy; coping; sibling; clinical article; Portugal; clinical practice; adolescent; caregiver; semi structured interview; family; grandchild; psychologic assessment; Coping Strategy Questionnaire; clinical assessment tool; grandparent
Creator
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Nogueira AJ; Ribeiro MT
Description
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In Portugal, there are over 7800 children with life-limiting conditions. The context of pediatric palliative care represents a complex and distressing experience for families. Compared to parental caregivers and healthy siblings, grandparents are underexplored in the literature and clinical practice. The aim of the present study is to propose a psychological experience assessment tool of grandparents in this context. It consists of a sociodemographic and clinical data sheet and a semi-structured interview based on sharing a testimony with other grandparents. On the basis of the latter, 10 dimensions were explored through the grandparents’ own perspective: representation of the illness; representation of the sick grandchild; changes in routine and life; family impact; grandparents’ contributions to the family system; social support and coping strategies; emotional impact; triple concern; needs identification; and post-traumatic growth. The tool can be used in person or remotely and may be combined with other instruments. Its application enables a personalized identification of needs and challenges for each family, promoting the adjustment of the clinical intervention to their wellbeing and resilience from an eco-systemic perspective. The clinical tool is presented in detail and its importance in the context of research and systemic intervention is discussed.
Identifier
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<a href="http://doi.org/10.3390/clinpract14010010" target="_blank" rel="noreferrer noopener">10.3390/clinpract14010010</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
Adolescent
April List 2024
Article
Caregiver
Child
Clinical Article
clinical assessment tool
Clinical Practice
Clinics and Practice
Coping
Coping Strategy Questionnaire
Family
Female
grandchild
grandparent
Human
Male
Nogueira AJ
Palliative Care
Palliative Therapy
Portugal
psychologic assessment
Ribeiro MT
Semi Structured Interview
Sibling
Social Support
-
Dublin Core
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April 2024 List
Text
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Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.1111/apa.17084" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.17084</a>
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Title
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Serious news communication between clinicians and parents impacts parents' experiences, decision-making, and clinical care for critically ill neonates
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
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Infant Newborn; Critical Illness; article; human; newborn; quality of life; palliative therapy; health care; parent; interpersonal communication; shared decision making; clinical outcome; neonatal intensive care unit; communication disorder; critically ill patient; decision making; prenatal diagnosis; semi structured interview; conversation; personal experience; purposive sample; clinician
Creator
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Kukora S; Krenz C; DeVries R; Spector-Bagdady K
Description
An account of the resource
Physicians often disclose serious news with patients and families; however, many clinicians experience anxiety around these conversations.1 Fear of their patients' and their own emotional reactions may cause providers to avoid these conversations rather than engage with empathy.1 Poor communication in the neonatal intensive care unit (NICU) when an infant is critically ill or dies can have deleterious effects on decision-making and long-term parental coping.2 Provision of information is imperative to shared decision-making about clinical therapies or care goals.3 Failure to effectively convey information could lead to decisions that do not align with parents' values, associated with long-term grief, decisional conflict, and regret.4, 5 Additionally, inability of clinicians to listen and engage with parents can lead to mistrust in the care team.3, 6 Parents recall in detail how serious news is delivered even years after hospitalisation,7 and their perceptions of these interactions impact their well-being.4, 7 Despite this, few studies have investigated parents' perspectives on serious news communication in the NICU. In this study, we sought to better characterise the communication problems parents of critically ill infants perceive in the antenatal and neonatal period around serious news conversations and to identify potential clinical care consequences arising from these communication issues...
Identifier
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<a href="http://doi.org/10.1111/apa.17084" target="_blank" rel="noreferrer noopener">10.1111/apa.17084</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
Acta Paediatrica
April List 2024
Article
Clinical Outcome
Clinician
communication disorder
Conversation
Critical Illness
Critically Ill Patient
Decision Making
DeVries R
Health Care
Human
Infant Newborn
Interpersonal Communication
Krenz C
Kukora S
Neonatal Intensive Care Unit
Newborn
Palliative Therapy
Parent
Personal Experience
Prenatal Diagnosis
Purposive Sample
Quality Of Life
Semi Structured Interview
shared decision making
Spector-Bagdady K
-
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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/10.1136/archdischild-2023-325810" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-325810</a>
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Title
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Importance of parental involvement in paediatric palliative care in Hong Kong: Qualitative case study
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; diagnosis; article; female; human; male; social support; palliative therapy; Internet; interview; medical information; physician; health care personnel; therapy; caregiver; semi structured interview; case study; nurse; child health; Hong Kong
Creator
An entity primarily responsible for making the resource
Wong FKY; Ho JMC; Lai TC; Lee LPY; Ho EKY; Lee SWY; Chan SCW; Fung CW; Ho ACH; Li CH; Li CK; Chiu ATG; Tsui KW; Lam KKW
Description
An account of the resource
Objective: To compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers. Design: A qualitative case study method using semistructured interviews was employed with a within-case and across-case analysis. Themes and subthemes emerging from the cases were compared and contrasted in the across-case analysis to explore the similarities and variations in participant perceptions. Setting/participants: The setting was the paediatric departments of five regional hospitals in Hong Kong. Twenty-five sets of informants (CLLC-parent-healthcare provider) were recruited, with 65 individual interviews conducted. Results: A total of 3784 units of analysis were identified, resulting in three themes with subthemes. 'Living with the disease' (55.8%) occupied the largest proportion, followed by 'information and understanding about the disease' (27.4%), and 'care support and palliative care' (16.8%). Healthcare provider support mainly focused on physical concerns. Family and social support were present, but carer stress created tension between couples. Doctors were the primary source of medical information, but the parents had to seek further information via the internet and support from patient groups. There was a perceived need for better coordination and collaboration of care. The palliative care approach coordinated by nurses was seen as helpful in addressing the care needs of the CLLC.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2023-325810" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-325810</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
Archives of Disease in Childhood
Article
Caregiver
Case Study
Chan SCW
Child
Child Health
Chiu ATG
Diagnosis
February List 2024
Female
Fung CW
Health Care Personnel
Ho ACH
Ho EKY
Ho JMC
Hong Kong
Human
Internet
Interview
Lai TC
Lam KKW
Lee LPY
Lee SWY
Li CH
Li CK
Male
Medical Information
Nurse
Palliative Therapy
Physician
Semi Structured Interview
Social Support
Therapy
Tsui KW
Wong FKY
-
Dublin Core
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Title
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February 2024 List
Text
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Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1111/hex.13925" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/hex.13925</a>
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Title
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What do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis
Publisher
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Health Expectations
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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child; disability; article; controlled study; female; human; male; palliative therapy; preschool child; child parent relation; aged; interview; parent; interpersonal communication; school child; intellectual impairment; qualitative research; side effect; hospital care; adolescent; health care system; drug therapy; semi structured interview; adverse drug reaction; patient safety; pediatric hospital; thematic analysis; special situation for pharmacovigilance; kindness
Creator
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Ong N; Lucien A; Long J; Weise J; Burgess A; Walton M
Description
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Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual disability admitted to two tertiary state-wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability. Design, setting and participants: Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi-structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses. Results: Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability-specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child-centred context. Conclusions: The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital. Patient and public contribution: Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews.
Identifier
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<a href="http://doi.org/10.1111/hex.13925" target="_blank" rel="noreferrer noopener">10.1111/hex.13925</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
Adverse Drug Reaction
Aged
Article
Burgess A
Child
Child Parent Relation
Controlled Study
Disability
Drug Therapy
February List 2024
Female
Health Care System
Health Expectations
Hospital care
Human
Intellectual Impairment
Interpersonal Communication
Interview
kindness
Long J
Lucien A
Male
Ong N
Palliative Therapy
Parent
Patient Safety
Pediatric Hospital
Preschool Child
Qualitative Research
School Child
Semi Structured Interview
Side Effect
special situation for pharmacovigilance
Thematic Analysis
Walton M
Weise J
-
Dublin Core
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Title
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February 2024 List
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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/10.1080/07853890.2023.2268093" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/07853890.2023.2268093</a>
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Title
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A psychological experience assessment protocol of parent caregivers in paediatric palliative care
Publisher
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Annals of Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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child; adult; article; human; social support; palliative therapy; clinical article; caregiver; parent; Portugal; United Kingdom; therapy; questionnaire; coping behavior; semi structured interview; vulnerability; psychologic assessment; Coping Strategy Questionnaire
Creator
An entity primarily responsible for making the resource
Nogueira AJ; Ribeiro MT
Description
An account of the resource
Background: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the emergence of an illness, and therefore several studies have tended to focus on the adaptation of parent caregivers. The aim of the present study is to present a psychological experience assessment protocol of parents in PPC. Methods: It consists of a socio-demographic and clinical questionnaire and a semi-structured interview based on an incomplete narrative deriving from the Unwanted Guest Metaphor. Results: On the basis of the latter, 10 dimensions of the experience in the parental subsystem were explored through parents' own perspective, namely: confrontation with the diagnosis; representation of the illness; emotional impact; day-to-day challenges; family impact; resources and social support; coping strategies; posttraumatic growth; representation of the sick child; and future perspectives. Discussion: The protocol can be used in person or remotely and its application enables the identification of specific needs and the establishment of psychotherapeutic goals and strategies for each family, thus enhancing their well-being and resilience, from an eco-systemic perspective. Conclusions: The protocol is presented in detail and its importance in the context of research and systemic intervention in PPC is discussed.
Identifier
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<a href="http://doi.org/10.1080/07853890.2023.2268093" target="_blank" rel="noreferrer noopener">10.1080/07853890.2023.2268093</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
Annals Of Medicine
Article
Caregiver
Child
Clinical Article
Coping Behavior
Coping Strategy Questionnaire
February List 2024
Human
Nogueira AJ
Palliative Therapy
Parent
Portugal
psychologic assessment
Questionnaire
Ribeiro MT
Semi Structured Interview
Social Support
Therapy
United Kingdom
VULNERABILITY
-
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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>
Dublin Core
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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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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
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
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.3389/fonc.2023.1118992" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fonc.2023.1118992</a>
Dublin Core
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Title
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Communication and information sharing with pediatric patients including refugees with advanced cancer, their caregivers, and health care professionals in Jordan: a qualitative study
Publisher
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Frontiers in Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; adult; article; female; human; male; palliative therapy; Information Dissemination; caregiver; health care personnel; human experiment; health care policy; cross-sectional study; adolescent; Jordan; qualitative research; attitude to health; semi structured interview; pediatric patient; Jordanian; implicit bias; advanced cancer/dm [Disease Management]; doctor patient relationship; medical information; refugee; health care practice; myelodysplastic syndrome; myeloproliferative disorder; reticuloendothelial tumor
Creator
An entity primarily responsible for making the resource
Alarjeh G; Boufkhed S; Alrjoub W; Guo P; Yurdusen S; Ahmed F; Abdal-Rahman M; Alajarmeh S; Alnassan A; Al-Awady S; Kutluk T; Harding R; Shamieh O
Description
An account of the resource
Introduction: Effective communication in pediatric palliative cancer care is an important aspect of practice to enhance patient- and family-centered care, and to optimize decision-making. However, little is known about communication preferences practices from the perspectives of children, caregivers and their health care professionals (HCPs) in the Middle Eastern region. Furthermore, involving children in research is crucial but limited. This study aimed to describe the communication and information-sharing preferences and practices of children with advanced cancer, their caregivers, and health care professionals in Jordan. Method(s): A qualitative cross-sectional study was conducted using semi-structured face to face interviews with three groups of stakeholders (children, caregivers and HCPs). Purposive sampling recruited a diverse sample from inpatient and outpatient settings at a tertiary cancer center in Jordan. Procedures were in line with the Consolidated criteria for reporting qualitative research (COREQ) reporting guidelines. Verbatim transcripts were thematically analyzed. Finding(s): Fifty-two stakeholders participated: 43 Jordanian and 9 refugees (25 children, 15 caregivers and 12 HCPs). Four major themes emerged: 1) Hiding information between the three stakeholders which includes parents who hide the information from their sick children and ask the HCPs to do so to protect the child from distressful emotions and children who hide their suffering from their parents to protect them from being sad; 2) Communication and sharing of clinical versus non-clinical information; 3) Preferred communication styles such as use of a companionate approach by acknowledging patients and caregivers' suffering, building a trustful relationship, proactive information sharing, considering child age and medical status, parents as facilitators in communication, and patients' and caregivers' health literacy; 4) Communication and information sharing with refugees where they had dialect issues, which hindered effective communication. Some refugees had unrealistically high expectations regarding their child's care and prognosis, which posed challenges to communication with staff. Discussion(s): The novel findings of this study should inform better child-centered practices and better engage them in their care decisions. This study has demonstrated children's ability to engage in primary research and to express preferences, and parents' ability to share views on this sensitive topic.Copyright © 2023 Alarjeh, Boufkhed, Alrjoub, Guo, Yurdusen, Ahmed, Abdal-Rahman, Alajarmeh, Alnassan, Al-Awady, Kutluk, Harding and Shamieh.
Identifier
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<a href="http://doi.org/10.3389/fonc.2023.1118992" target="_blank" rel="noreferrer noopener">10.3389/fonc.2023.1118992</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
Abdal-Rahman M
Adolescent
Adult
advanced cancer/dm [Disease Management]
Ahmed F
Al-Awady S
Alajarmeh S
Alarjeh G
Alnassan A
Alrjoub W
Article
Attitude To Health
Boufkhed S
Caregiver
Child
Cross-sectional Study
doctor patient relationship
Female
Frontiers in Oncology
Guo P
Harding R
Health Care Personnel
Health Care Policy
health care practice
Human
Human Experiment
implicit bias
Information Dissemination
Jordan
Jordanian
Kutluk T
Male
Medical Information
myelodysplastic syndrome
myeloproliferative disorder
Palliative Therapy
pediatric patient
Qualitative Research
refugee
reticuloendothelial tumor
Semi Structured Interview
Shamieh O
Yurdusen S
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.5209/psic.78677" target="_blank" rel="noreferrer noopener"> http://doi.org/10.5209/psic.78677</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 care for oncologic patients undergoing pediatric palliative care and the griefs of a health team
Publisher
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Psicooncologia
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Palliative Care; article; female; human; male; chronic disease; palliative therapy; psychology; anxiety; clinical article; follow up; cross-sectional study; health service; cancer diagnosis; questionnaire; coronavirus disease 2019; pandemic; semi structured interview
Creator
An entity primarily responsible for making the resource
de Sena JGM; Melo CF; de Vasconcelos AV; Teixeira LC; Ruiz EM; Alves RSF
Description
An account of the resource
Introduction: The health care offered to children and adolescents with cancer has been expanded, giving space to orthothanasia and palliative care, with a comprehensive look at the subject facing the threat to the continuity of life, as well as challenging professionals to access issues related to grief. Objective(s): In order to explore this reality, this study intended to analyze how professionals experience grieving processes in the exercise of palliative care in pediatric oncology. Method(s): A qualitative research was conducted with the participation of 23 health professionals working in palliative oncology and pediatric care, who responded to a semi-structured interview script, whose analyses were performed with the support of the IRaMuTeQ (Interface de R pour les Analyses Multidimensionnelles de Textes et de Questionnaires) software. Result(s): The results were organized in four classes: in class 1, the specificities of the treatment of children with cancer and other aspects related to chronic illness are portrayed; class 2 shows that health trainings do not prepare professionals to deal with death and with patients with no possibility of cure, and these professionals have (pre-) concepts about palliative care; class 3 highlights the principles of palliative care and other factors of the work in this therapy; and class 4 deals with the bonds formed by professionals and their grieving experiences. Conclusion(s): Cure must not be a requirement for the provision of care in relation to children with cancer that can benefit from the adoption of palliative care therapy and the validation of the sensitivity of professionals.Copyright © 2023, Universidad Compultense Madrid. All rights reserved.
Identifier
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<a href="http://doi.org/10.5209/psic.78677" target="_blank" rel="noreferrer noopener">10.5209/psic.78677</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
Alves RSF
anxiety
Article
Cancer Diagnosis
Chronic Disease
Clinical Article
coronavirus disease 2019
Cross-sectional Study
de Sena JGM
de Vasconcelos AV
Female
Follow Up
Health Service
Human
Male
Melo CF
Palliative Care
Palliative Therapy
Pandemic
Psicooncologia
Psychology
Questionnaire
Ruiz EM
Semi Structured Interview
Teixeira LC
-
Dublin Core
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Title
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2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1186/s12906-023-03924-x" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12906-023-03924-x</a>
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Title
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Supportive care for cancer-related symptoms in pediatric oncology: a qualitative study among healthcare providers
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BMC Complementary Medicine and Therapies
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Canada; United States; Germany; childhood cancer; adult; article; cancer chemotherapy; female; human; male; quality of life; palliative therapy; aged; education; Netherlands; anxiety; philosophy; Norway; clinical article; interview; content analysis; health care personnel; qualitative research; cancer therapy; insomnia; fatigue; acute lymphoblastic leukemia; leukemia; constipation; nausea; semi structured interview; vomiting; alternative medicine; nurse; music therapy; dietitian; acupuncture; aromatherapy; integrative medicine; massage; professional practice; acupressure; play therapy; psychodrama; vincristine
Creator
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Mora DC; Jong MC; Quandt SA; Arcury TA; Kristoffersen AE; Stub T
Description
An account of the resource
Background: The aim of this study is to gain insight into the clinical experiences and perceptions that pediatric oncology experts, conventional healthcare providers, and complementary and alternative medicine (CAM) providers in Norway, Canada, Germany, the Netherlands, and the United States have with the use of supportive care, including CAM among children and adolescents with cancer. Method(s): A qualitative study was conducted using semi-structured in-depth interviews (n = 22) with healthcare providers with clinical experience working with CAM and/or other supportive care among children and adolescents with cancer from five different countries. Participants were recruited through professional associations and personal networks. Systematic content analysis was used to delineate the main themes. The analysis resulted in three themes and six subthemes. Result(s): Most participants had over 10 years of professional practice. They mostly treated children and adolescents with leukemia who suffered from adverse effects of cancer treatment, such as nausea and poor appetite. Their priorities were to identify the parents' treatment goals and help the children with their daily complaints. Some modalities frequently used were acupuncture, massage, music, and play therapy. Parents received information about supplements and diets in line with their treatment philosophies. They received education from the providers to mitigate symptoms and improve the well-being of the child. Conclusion(s): Clinical experiences of pediatric oncology experts, conventional health care providers, and CAM providers give an understanding of how supportive care modalities, including CAM, are perceived in the field and how they can be implemented as adaptational tools to manage adverse effects and to improve the quality of life of children diagnosed with cancer and the families.Copyright © 2023, The Author(s).
Identifier
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<a href="http://doi.org/10.1186/s12906-023-03924-x" target="_blank" rel="noreferrer noopener">10.1186/s12906-023-03924-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).
2023
2023 SE3 - Oncology
acupressure
Acupuncture
Acute Lymphoblastic Leukemia
Adult
Aged
alternative medicine
anxiety
Arcury TA
Aromatherapy
Article
BMC Complementary Medicine and Therapies
Canada
Cancer Chemotherapy
Cancer Therapy
Childhood Cancer
Clinical Article
Constipation
Content Analysis
dietitian
Education
Fatigue
Female
Germany
Health Care Personnel
Human
insomnia
Integrative Medicine
Interview
Jong MC
Kristoffersen AE
Leukemia
Male
Massage
Mora DC
Music Therapy
Nausea
Netherlands
Norway
Nurse
Palliative Therapy
Philosophy
Play Therapy
Professional Practice
psychodrama
Qualitative Research
Quality Of Life
Quandt SA
Semi Structured Interview
Stub T
United States
vincristine
Vomiting
-
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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October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.3389/fped.2023.1167757" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fped.2023.1167757</a>
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Title
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A qualitative exploration of parental perspectives on quality of care for children with serious illnesses
Publisher
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Frontiers in Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Child; child; article; human; caregiver; qualitative research; perception; palliative therapy; pediatrics; conceptual framework; health care quality; total quality management; Singapore; Only Child; health care organization; human tissue; semi structured interview; theoretical study; holistic care; grounded theory; worker; benchmarking
Creator
An entity primarily responsible for making the resource
Ang FJL; Chow CCT; Chong PH; Tan TSZ; Amin Z; Buang SNH; Finkelstein EA
Description
An account of the resource
Introduction: Being responsive to end-users is essential to good care. Limited in-depth exploration of parental perspectives on care received by children over the course of serious illness has hindered the development of process measures to evaluate quality of care. Our objective was to identify the key process indicators prioritized by parents in the care of seriously ill young children and develop a framework to guide assessment of quality of care. Method(s): This qualitative study followed Charmaz's Constructivist Grounded Theory. In-depth semi-structured interviews were conducted with parents of young children with serious illness in Singapore. Participants were sampled across various healthcare settings, children's ages, and illness categories. Theoretical sampling and constant comparative analysis were used to generate initial, focused, and theoretical codes, which informed construction of a conceptual framework. Result(s): 31 parents participated from July 2021 to February 2022. Initial and focused coding generated 64 quality of care indicators describing key care practices, interactions, and procedures. Indicators were categorized under four themes: (1) efficient healthcare structures and standards, (2) professional qualities of healthcare workers, 3. supporting parent-caregivers, and 4. collaborative and holistic care. Theoretical coding led to the development of the "PaRental perspectives on qualIty of care for Children with sErious iLlnESSes (PRICELESS)" framework which summarizes elements contributing to the parental perception of quality of care. Discussion(s): The identified process indicators will facilitate the development of standardised parent-reported measures for assessing service quality and benchmarking among providers. The framework provides overall guidance for conceiving quality improvement initiatives.Copyright 2023 Ang, Chow, Chong, Tan, Amin, Buang and Finkelstein.
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<a href="http://doi.org/10.3389/fped.2023.1167757" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1167757</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
Amin Z
Ang FJL
Article
Benchmarking
Buang SNH
Caregiver
Child
Chong PH
Chow CCT
Conceptual Framework
Finkelstein EA
Frontiers in Pediatrics
Grounded Theory
health care organization
Health Care Quality
Holistic Care
Human
Human Tissue
October List 2052
Only Child
Palliative Therapy
Pediatrics
Perception
Qualitative Research
Semi Structured Interview
Singapore
Tan TSZ
theoretical study
Total Quality Management
worker
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1186/s12904-023-01238-w" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01238-w</a>
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Title
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Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative study
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Terminal Care; child; terminal care; article; female; human; male; palliative therapy; clinical article; education; child health care; awareness; qualitative research; funding; human experiment; semi structured interview; thematic analysis; organization; specialization
Creator
An entity primarily responsible for making the resource
Papworth A; Hackett J; Beresford B; Murtagh F; Weatherly H; Hinde S; Bedendo A; Walker G; Noyes J; Oddie S; Vasudevan C; Feltbower RG; Phillips B; Hain R; Subramanian G; Haynes A; Fraser LK
Description
An account of the resource
Background: Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative study aimed to explore regional perspectives of the successes, and challenges to the equitable coordination and delivery of end-of-life care for children in the UK. The study provides an overarching perspective on the challenges of delivering and coordinating end-of-life care for children in the UK, and the impact of these on health professionals and organisations. Previous research has not highlighted the successes in the sector, such as the formal and informal coordination of care between different services and sectors. Method(s): Semi-structured interviews with Chairs of the regional Palliative Care Networks across the UK. Chairs or co-Chairs (n = 19) of 15/16 Networks were interviewed between October-December 2021. Data were analysed using thematic analysis. Result(s): Three main themes were identified: one standalone theme ("Communication during end-of-life care"); and two overarching themes ("Getting end-of-life services and staff in the right place", with two themes: "Access to, and staffing of end-of-life care" and "Inconsistent and insufficient funding for end-of-life care services"; and "Linking up healthcare provision", with three sub-themes: "Coordination successes", "Role of the networks", and "Coordination challenges"). Good end-of-life care was facilitated through collaborative and network approaches to service provision, and effective communication with families. The implementation of 24/7 advice lines and the formalisation of joint-working arrangements were highlighted as a way to address the current challenges in the specialism. Conclusion(s): Findings demonstrate how informal and formal relationships between organisations and individuals, enabled early communication with families, and collaborative working with specialist services. Formalising these could increase knowledge and awareness of end of life care, improve staff confidence, and overall improve professionals' experiences of delivering care, and families' experiences of receiving it. There are considerable positives that come from collaborative working between different organisations and sectors, and care could be improved if these approaches are funded and formalised. There needs to be consistent funding for paediatric palliative care and there is a clear need for education and training to improve staff knowledge and confidence.Copyright © 2023, BioMed Central Ltd., part of Springer Nature.
Identifier
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<a href="http://doi.org/10.1186/s12904-023-01238-w" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01238-w</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Article
Awareness
Bedendo A
Beresford B
BMC Palliative Care
Child
Child Health Care
Clinical Article
Education
Feltbower RG
Female
Fraser LK
Funding
Hackett J
Hain R
Haynes A
Hinde S
Human
Human Experiment
Male
Murtagh F
Noyes J
October List 2040
Oddie S
Organization
Palliative Therapy
Papworth A
Phillips B
Qualitative Research
Semi Structured Interview
Specialization
Subramanian G
Terminal Care
Thematic Analysis
Vasudevan C
Walker G
Weatherly H
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.517" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.517</a>
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What constitutes 'good quality care' from the perspectives of children and young people with life-limiting and life-threatening conditions?
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Child; child; female; human; male; outpatient; preschool child; clinical article; Only Child; hospital patient; nervous system; malignant neoplasm; developmental stage; adolescent; conference abstract; semi structured interview; conversation; genetic transcription; social care
Creator
An entity primarily responsible for making the resource
Braybrook D; Coombes L; Scott HM; Haroardottir D; Bristowe K; Fraser L; Harding R
Description
An account of the resource
Objectives Children with life-limiting and life-threatening conditions (LLLTC) have complex needs and are high users of health and social care. Several quality standards exist that highlight the importance of addressing the needs and wishes of children and young people (CYP) with LLLTC in paediatric palliative care. However there is limited evidence about what children themselves think is important. The aim of this study is to consider what constitutes good quality care from the perspectives of CYP with LLLTC. Methods Nine UK inpatient and outpatient settings supported recruitment of CYP aged 5-17 with LLLTC to participate in qualitative semi-structured interviews. Care quality was coded within a larger framework analysis. Analysis of verbatim transcripts was supported by NVivo. Results 26 children and young people with a range of LLLTCs (10 gastrointestinal, 6 cancer, 5 neurological, 3 congenital, 1 metabolic, 1 respiratory) were interviewed. Three domains of quality care were identified: 1) good communication with the health and social care professionals that care for CYP; 2) being enabled to be a CYP during their care; and 3) how professionals can best alleviate their symptoms and concerns. Children and young people spoke about the significance of being cared for attentively, by professionals that they know and who make an effort to know them. They want symptom relief in comfortable settings tailored to their needs and interests. It was important to facilitate activities that are appropriate to their cognitive age. CYP also value being included in conversations about their care in an appropriate way. When health and social care professionals ask CYP about things that are important to them it demonstrates that they care. Conclusion Children and young people with life-limiting and life-threatening conditions have unique and important views about what they want from their care. CYP appreciate professionals making an effort to know them in a way that is appropriate to their developmental stage, and explicit opportunities to be part of communication about their care. Quality care must be informed by CYP views, including those with serious, complex illness. Our study has demonstrated that they can provide useful and specific input. Experiential data on quality of care should be collected alongside outcome data.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.517" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.517</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
Adolescent
Archives of Disease in Childhood
Braybrook D
Bristowe K
Child
Clinical Article
conference abstract
Conversation
Coombes L
developmental stage
Female
Fraser L
genetic transcription
Harding R
Haroardottir D
Hospital Patient
Human
Male
Malignant Neoplasm
Nervous System
October List 2029
Only Child
Outpatient
Preschool Child
Scott HM
Semi Structured Interview
Social 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 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1186/s12904-023-01194-5" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01194-5</a>
Dublin Core
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Title
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Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Palliative Care; adult; article; controlled study; female; human; male; palliative therapy; pediatrics; clinical article; qualitative research; skill; health care system; thematic analysis; decision making; multidisciplinary team; semi structured interview; organization; patient care team
Creator
An entity primarily responsible for making the resource
Rico-Mena P; Gueita-Rodriguez J; Martino-Alba R; Chocarro-Gonzalez L; Sanz-Esteban I; Palacios-Cena D
Description
An account of the resource
Purpose: To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents. Methods: A qualitative descriptive case study was conducted. Purposeful sampling took place within a specialized pediatric palliative care Unit in Madrid (Spain), located at the Niño Jesus Hospital. The study participants included a specialized pediatric palliative care team from Madrid's pediatric palliative care program, other professional teams involved in interdisciplinary care and parents of children under pediatric palliative care. Data were collected via semi-structured interviews, focus groups and researchers' field notes. A thematic analysis was performed. Results: This study included 28 participants (20 women, 8 men), of whom 18 were professionals who belonged to the pediatric palliative care interdisciplinary team, 4 professionals were from other units that collaborated with the pediatric palliative care, and 6 were parents (5 women, 1 man). The mean age of the pediatric palliative care members was 38.2 years (SD ± 7.9), that of the collaborating professionals was 40.5 (SD ± 6.8), and that of the parents was 44.2 (SD ± 5.4). Two main themes emerged: a) Pediatric palliative care has a distinct identity, associated with life. It represents the provision of special care in highly complex children, in the context of the home, far from the hospital environment; b) The team is key: its interdisciplinary organization provides a more comprehensive view of the child and their family, fosters communication among professionals, and improves coordination with other services involved in the care of children. The mindset shift experienced by ID-PPC professionals towards a palliative approach makes them more sensitive to the needs of their patients and leads them to develop specific skills in areas such as communication, decision-making, and adaptability that were identified as differentiating aspects of pediatric palliative care. Conclusions: Describing pediatric palliative care from the professional and parental perspective helps to establish realistic and comprehensive goals for the care of children and their parents. The findings of this study may help with the establishment of a pediatric palliative care team, as a necessary organizational change in a health care system that cares for children with complex and life-threatening conditions. Promoting training in pediatric palliative care, prioritizing more horizontal organizations, providing tools and spaces for coordination and communication between professionals from different services, together with the creation of a position of case coordinator in the care process of children could enhance the understanding of pediatric palliative care services.
Identifier
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<a href="http://doi.org/10.1186/s12904-023-01194-5" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01194-5</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adult
Article
August List 2046
BMC Palliative Care
Child
Chocarro-González L
Clinical Article
Controlled Study
Decision Making
Female
Gueita-Rodriguez J
Health Care System
Human
Male
Martino-Alba R
Multidisciplinary team
Organization
Palacios-Cena D
Palliative Care
Palliative Therapy
Patient Care Team
Pediatrics
Qualitative Research
Rico-Mena P
Sanz-Esteban I
Semi Structured Interview
Skill
Thematic Analysis
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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>
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Title
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"They were here, and they still matter": A qualitative study of bereaved parents legacy experiences and perceptions
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
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
An unambiguous reference to the resource within a given context
<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
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/10.1016/j.pecinn.2023.100173" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.pecinn.2023.100173</a>
Dublin Core
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Title
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Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation
Publisher
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PEC Innovation
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; article; cohort analysis; female; human; male; quality of life; palliative therapy; Ventilators, Mechanical; tracheostomy; content analysis; pilot study; respiratory failure; adolescent; decision making; intensive care unit; semi structured interview; pediatric patient; length of stay; counseling; artificial ventilation; home ventilation; Question Prompt List
Creator
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Boss RD; Vo HH; Jabre NA; Shepard J; Mercer A; McDermott A; Lanier CL; Ding Y; Wilfond BS; Henderson CM
Description
An account of the resource
Objective: To pilot feasibility and acceptability of HomeVENT, a systematic approach to family-clinician decision-making about pediatric home ventilation. Methods: Parents and clinicians of children facing home ventilation decisions were enrolled at 3 centers using a pre/post cohort design. Family interventions included: 1) a website describing the experiences of families who previously chose for and against home ventilation 2) a Question Prompt List (QPL); 3) in-depth interviews exploring home life and values. Clinician HomeVENT intervention included a structured team meeting reviewing treatment options in light of the family's home life and values. All participants were interviewed one month after the decision. Results: We enrolled 30 families and 34 clinicians. Most Usual Care (14/15) but fewer Intervention (10/15) families elected for home ventilation. Families reported the website helped them consider different treatment options, the QPL promoted discussion within the family and with the team, and the interview helped them realize how home ventilation might change their daily life. Clinicians reported the team meeting helped clarify prognosis and prioritize treatment options. Conclusions: The HomeVENT pilot was feasible and acceptable. Innovation: This systematic approach to pediatric home ventilation decisions prioritizes family values and is a novel method to increase the rigor of shared decision-making in a rushed clinical environment.
Identifier
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<a href="http://doi.org/10.1016/j.pecinn.2023.100173" target="_blank" rel="noreferrer noopener">10.1016/j.pecinn.2023.100173</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
Article
Artificial Ventilation
August List 2025
Boss RD
Child
Cohort Analysis
Content Analysis
Counseling
Decision Making
Ding Y
Female
Henderson CM
home ventilation
Human
Intensive Care Unit
Jabre NA
Lanier CL
Length Of Stay
Male
McDermott A
Mercer A
Palliative Therapy
PEC Innovation
pediatric patient
Pilot Study
Quality Of Life
Question Prompt List
respiratory failure
Semi Structured Interview
Shepard J
Tracheostomy
Ventilators, Mechanical
Vo HH
Wilfond BS
-
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Title
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July 2023 List
Text
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Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.3390/children10040700" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10040700</a>
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Title
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The Emotional Experience of Caring for Children in Pediatric Palliative Care: A Qualitative Study among a Home-Based Interdisciplinary Care Team
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
care behavior; emotion; palliative therapy; pediatrics; adult; article; burnout; case study; child; child death; collaborative care team; emotional stress; Emotions; female; health personnel attitude; home care; human; job satisfaction; male; Palliative Care; qualitative research; satisfaction; semi structured interview; thematic analysis
Creator
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Rico-Mena P; Gueita-Rodriguez J; Martino-Alba R; Castel-Sanchez M; Palacios-Cena D
Description
An account of the resource
The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric palliative home care team. A qualitative case study was conducted, comprising 18 participants. A purposeful sampling technique approach was used including the home-based interdisciplinary pediatric palliative team. Data were collected via semi-structured interviews and researchers' field notes. A thematic analysis was performed. Two themes emerged: (a) changing life for the better, which described how professionals value life more and helping children and families provides compassion satisfaction, which is comforting and explains their dedication to care; (b) adverse effects of work highlighted the emotional burden of caring for children with life-limiting or life-threatening illnesses, which can affect their job satisfaction and may lead to burnout, showing how experiencing in-hospital child deaths with suffering leads professionals to develop an interest in specializing in pediatric palliative care. Our study provides information on possible causes of emotional distress in professionals caring for children with life-threatening illnesses and highlights strategies that can help them to reduce their distress.Copyright © 2023 by the authors.
Identifier
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<a href="http://doi.org/10.3390/children10040700" target="_blank" rel="noreferrer noopener">10.3390/children10040700</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
Burnout
care behavior
Case Study
Castel-Sanchez M
Child
Child Death
Children
collaborative care team
Emotion
Emotional Stress
Emotions
Female
Gueita-Rodriguez J
Health Personnel Attitude
Home Care
Human
Job Satisfaction
July List 2023
Male
Martino-Alba R
Palacios-Cena D
Palliative Care
Palliative Therapy
Pediatrics
Qualitative Research
Rico-Mena P
Satisfaction
Semi Structured Interview
Thematic Analysis
-
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Title
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July 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
July List 2023
URL Address
<a href="http://doi.org/10.1111/jpc.16357" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jpc.16357</a>
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Siblings and End-Of-Life Decision Making in the NICU
Publisher
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Journal of Paediatrics and Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
decision making; sibling; care behavior; child; clinical article; conference abstract; content analysis; critically ill patient; Decision Making; electronic medical record; female; human; infant; male; neonatal intensive care unit; perception; semi structured interview; wellbeing
Creator
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Power J; Gillam L; Prentice TM
Description
An account of the resource
Background: When making end-of-life decisions for a child in the neonatal intensive care unit (NICU), standard practice is to involve parents in shared decision-making so that the values of parents are considered and decisions are made in the interests of the child. In this decision-making process, it is not known whether parents are influenced by the needs of their other children. Method(s): A qualitative two-phase exploratory methodology was chosen to understand how considerations for other children in the family influence parents' decisions. The electronic medical records of children ( n = 20) previously admitted to the Royal Children's Hospital's NICU were analysed for relevant mentions of siblings. Then, families ( n = 3) participated in semi-structured interviews to understand considerations of siblings. Statements and interviews were analysed using inductive content analysis. Result(s): Parents articulate the considerate juggling act of balancing the day-to-day needs of multiple children during the NICU journey. With the wellbeing of siblings in mind, parents made a range of decisions with different degrees of medical impact in the NICU. For end-of-life decisions, parents differed in their perspectives about whether considerations of siblings should be taken into account. Moreover, clinicians were aware of the challenges of caring for multiple children and supported parents with these challenges. Conclusion(s): It is clinically and ethically significant that sibling considerations impact end-of-life decision-making. We suggest clinicians reflect on their own perception of how much siblings should be allowed to influence end-of-life decisions to protect critically ill babies from harm. More research is needed to better understand these influences.
Identifier
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<a href="http://doi.org/10.1111/jpc.16357" target="_blank" rel="noreferrer noopener">10.1111/jpc.16357</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
care behavior
Child
Clinical Article
conference abstract
Content Analysis
Critically Ill Patient
Decision Making
electronic medical record
Female
Gillam L
Human
Infant
Journal of Paediatrics and Child Health
July List 2023
Male
Neonatal Intensive Care Unit
Perception
Power J
Prentice TM
Semi Structured Interview
Sibling
Wellbeing
-
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/10.1177/13674935221147716" 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
An entity primarily responsible for making the resource
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>
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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
-
Dublin Core
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Title
A name given to the resource
March 2023 List
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March List 2023
URL Address
<a href="http://doi.org/https://dx.doi.org/10.1002/pbc.29952" target="_blank" rel="noreferrer noopener"> http://doi.org/https://dx.doi.org/10.1002/pbc.29952</a>
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Title
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Bereaved Parents' Perspective on Communication of Transition to Palliative Care in Pediatric Oncology - Hungarian Experience
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Bereavement; Child; childhood cancer; clinical article; communication protocol; conference abstract; consultation; Female; genetic transcription; Human; Hungary; Male; nonverbal communication; Palliative Therapy; semi structured interview; Terminal Care
Creator
An entity primarily responsible for making the resource
Foldesi E; Zorgo S; Nyiro J; Hegedus K; Hauser P
Description
An account of the resource
Background and Aims: Transition to palliative care (PC) is a critical aspect of pediatric oncology requiring a high level of communication skills from doctors, which could be best judged by parents of children died in cancer. Our aim was to explore parents' perspectives regarding the timing of the consultation on implementing PC, as well as facets of verbal and non-verbal communication in Hungary. Method(s): Semi-structured interviews were conducted with parents who had lost their child to cancer within the past 1-5 years. Interview transcripts (n=23) were scrutinized with Interpretative Phenomenological Analysis. Result(s): Parents frequently associated palliation with end-of-life care and clearly delimited the transition to PC after curative treatments had been exhausted. Parents were ambivalent regarding using the word "death" during this consultation and often did not receive information on what to expect (e.g., regarding symptoms) and who to turn to for further information or support (e.g., concerning bereavement). Conclusion(s): Although significant progress could be observed in the organization of pediatric palliative care in Hungary, there is still no widely accepted communication method for communication of transition to sole PC. There is a need for a culturally-sensitive approach to refining recommendations on word-use and communication protocol in pediatric PC also in Hungary.
Identifier
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<a href="http://doi.org/https://dx.doi.org/10.1002/pbc.29952" target="_blank" rel="noreferrer noopener">https://dx.doi.org/10.1002/pbc.29952</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
Bereavement
Child
Childhood Cancer
Clinical Article
communication protocol
conference abstract
Consultation
Female
Foldesi E
genetic transcription
Hauser P
Hegedus K
Human
Hungary
Male
March List 2023
Nonverbal Communication
Nyiro J
Palliative Therapy
Pediatric Blood and Cancer
Semi Structured Interview
Terminal Care
Zorgo S
-
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/10.1097/NJH.0000000000000908" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/NJH.0000000000000908</a>
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Title
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Content Analysis of Multifaceted Needs for Improving the Quality of Pediatric Palliative Care Among Parents of Children With Life-threatening Conditions
Publisher
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Journal of Hospice and Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
South Korea; advance care planning; article; bereavement; bereavement support; care behavior; child; clinical article; content analysis; controlled study; diagnosis related group; female; human; male; palliative therapy; qualitative research; semi structured interview; spiritual care
Creator
An entity primarily responsible for making the resource
Cho-Hee K; Min-Sun K; Yi-Ji M; Hee-Young S; Myung-Nam L; Kyung-Ah K
Description
An account of the resource
This study aimed to identify parental needs for pediatric palliative care and obtain their opinions on developing pediatric palliative care in South Korea. This qualitative research design used inductive and deductive methods. The data were collected through semistructured interviews. A total of 6 parents actively caring for a child with life-threatening conditions and 7 bereaved parents participated in this study. A total of 707 significant statements, 43 subthemes, and 16 themes according to 6 structured matrices (advance care planning and symptom control, psychological and spiritual care, supporting everyday lives, end-of-life care and bereavement support, delivery model of pediatric palliative care, and unmet needs within current services) on the care and bereavement experiences of parents of children with life-threatening conditions were derived. Palliative care for children is a multidisciplinary approach to evaluate, prevent, and manage multifaceted symptoms and to support children with life-threatening conditions and their families. Our findings suggest that parents of children with life-threatening conditions in South Korea present multidimensional needs across the diagnostic groups and the illness trajectories and inform policy makers and health care professionals to design a pediatric palliative care delivery model. Further studies examining the unmet needs are required to enhance the quality of pediatric palliative care. 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.0000000000000908" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000908</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
Advance Care Planning
Article
Bereavement
Bereavement Support
care behavior
Child
Cho-Hee K
Clinical Article
Content Analysis
Controlled Study
December List 2022
diagnosis related group
Female
Hee-Young S
Human
Journal of Hospice and Palliative Nursing
Kyung-Ah K
Male
Min-Sun K
Myung-Nam L
Palliative Therapy
Qualitative Research
Semi Structured Interview
South Korea
Spiritual Care
Yi-Ji M
-
Dublin Core
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Title
A name given to the resource
2020 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 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.010" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1016/j.jpainsymman.2019.08.010</a>
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Title
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Seven Types of Uncertainty When Clinicians Care for Pediatric Patients With Advanced Cancer
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
child; human; palliative therapy; controlled study; article; pediatrics; childhood cancer; patient referral; Uncertainty; qualitative analysis; cancer patient; cancer prognosis; oncologist; pediatric patient; semi structured interview; organization; care behavior; Advanced cancer
Creator
An entity primarily responsible for making the resource
Hill D L; Walter J K; Szymczak J E; DiDomenico C; Parikh S; Feudtner C
Description
An account of the resource
Context: Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative referral intervention for oncology teams we explored how uncertainty might influence palliative care referrals.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.010" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.08.010</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Advanced Cancer
Article
Cancer Patient
Cancer Prognosis
care behavior
Child
Childhood Cancer
Controlled Study
DiDomenico C
Feudtner C
Hill D L
Human
Journal of Pain and Symptom Management
Oncologist
Oncology 2020 List
Organization
Palliative Therapy
Parikh S
Patient Referral
pediatric patient
Pediatrics
Qualitative Analysis
Semi Structured Interview
Szymczak J E
Uncertainty
Walter J K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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2020 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 2020 List
URL Address
<a href="http://doi.org/10.1200/JOP.19.00313" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1200/JOP.19.00313</a>
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Title
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"It's more difficult...": Clinicians' experience providing palliative care to adolescents and young adults diagnosed with advanced cancer
Publisher
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Journal of Oncology Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
family; human; adult; female; male; perception; article; aged; Canada; adolescent; young adult; health personnel attitude; cancer palliative therapy; physician; psychiatrist; tertiary care center; experience; qualitative research; semi structured interview; thematic analysis; advanced cancer; radiation oncologist; care behavior; clinician parent communication difficulty; advanced practice nurse; theoretical study; medical oncologist; counter transference
Creator
An entity primarily responsible for making the resource
Avery J; Geist A; D'Agostino N M; Kawaguchi S K; Mahtani R; Mazzotta P; Mosher P J; al-Awamer A; Kassam A; Zimmermann C; Samadi M; Tam S; Srikanthan A; Gupta A
Description
An account of the resource
PURPOSE Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely provided for health care providers (HCPs) in oncology. This study aims to explore the experiences of HCPs involved in introducing and providing palliative care caring for AYAs with advanced cancer and their families to understand the unique challenges HCPs experience. METHODS Using a qualitative descriptive design, semistructured interviews were conducted with medical and radiation oncologists, palliative care physicians, psychiatrists, and advanced practice nurses involved in caring for AYAs diagnosed with advanced cancer (N = 19). Interviews were transcribed verbatim and analyzed using thematic analysis in combination with constant comparative analysis and theoretical sampling. RESULTS There were 19 participants, 9 men and 10 women, with a median age of 45 years (range, 24-67 years). Six were palliative care physicians, 5 medical oncologists, 4 nurse practitioners, and 2 each radiation oncologists and psychiatrists. Overall, participants perceived the provision of palliative care for AYAs to be more difficult compared with older adults. Four themes emerged: (1) challenges helping AYAs/families to engage in and accept palliative care, (2) uncertainty regarding how to involve the family, (3) HCP sense of tragedy, and (4) HCP sense of emotional proximity. CONCLUSION Findings from this study support the development of dedicated training for HCPs involved in palliative care for AYA.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1200/JOP.19.00313" target="_blank" rel="noreferrer noopener">10.1200/JOP.19.00313</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).
2020
Adolescent
Adult
Advanced Cancer
Advanced Practice Nurse
Aged
al-Awamer A
Article
Avery J
Canada
Cancer Palliative Therapy
care behavior
clinician parent communication difficulty
counter transference
D'Agostino N M
Experience
Family
Female
Geist A
Gupta A
Health Personnel Attitude
Human
Journal of Oncology Practice
Kassam A
Kawaguchi S K
Mahtani R
Male
Mazzotta P
medical oncologist
Mosher P J
Oncology 2020 List
Perception
Physician
psychiatrist
Qualitative Research
radiation oncologist
Samadi M
Semi Structured Interview
Srikanthan A
Tam S
tertiary care center
Thematic Analysis
theoretical study
Young Adult
Zimmermann C
-
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
April 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
April 2020 List
URL Address
<a href="https://jim.bmj.com/content/68/1/91" target="_blank" rel="noreferrer noopener">https://jim.bmj.com/content/68/1/91</a>
Dublin Core
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Title
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Family attitudes toward genomic sequencing in children with cardiac disease
Publisher
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Journal of Investigative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
child; conference abstract; confidentiality; consumer; controlled study; Family Attitudes; family planning; genetic discrimination; grounded theory; health care system; heart center; Heart Diseases -- Mortality; human; human tissue; insurance; interrater reliability; perception; privacy; prognosis; resource allocation; semi structured interview; sequence analysis; surgery; transplantation; trust; uncertainty
Creator
An entity primarily responsible for making the resource
Gal D; Deuitch N; Tang R; Magnus D; Char D
Description
An account of the resource
Purpose of study Care for children with cardiac disease often involves difficult decisions and clinical uncertainty. Genomic Sequencing (GS) promises to improve clinical prognostics and could impact how difficult decisions are made. We sought to determine how GS results might alter family attitudes towards bedside care choices. Methods used We conducted semi-structured interviews of 35 families at a high-volume pediatric heart center. We discussed previous experience with and understanding of GS, perceptions toward GS in real and hypothetical scenarios, and support needed for implementing GS in clinical care. Responses were analyzed using grounded theory and a codebook was developed. Researchers discussed interpretation of codes and identified and described emerging themes. Interrater reliability was 0.91. Summary of results Three themes emerged: 1) Is knowledge beneficial? Families saw benefits in GS-the ability to provide specific and/or earlier diagnoses, clarify prognosis, change family planning, and avoid unnecessary/additional testing-but also struggled with the sense that GS results did not translate into meaningful changes in clinical care. 2) Should GS guide life limiting decisions and resource allocation? Some parents felt using GS to justify withdrawal of care or allocation of scarce resources (like organs for transplantation) could represent genetic discrimination; other parents felt GS should be used when allocating resources, even if it meant limitation of treatment options for their child. 3) Is giving GS results to the healthcare system safe? All families indicated mistrust of at least one facet of the medical system including insurance companies, maintenance of confidentiality, and the incentive structure in healthcare. Some also expressed distrust of direct to consumer GS testing. Conclusions In families of children with cardiac disease, trust is lacking in perceptions of the clinical utility of GS results, in using GS results to inform difficult decisions and in clinical protections for privacy or handling of GS results. Further efforts to improve the trustworthiness of clinical GS are needed to engage family support in implementation of GS to clinical care.
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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).
2020
April 2020 List
Char D
Child
conference abstract
Confidentiality
consumer
Controlled Study
Deuitch N
Family Attitudes
family planning
Gal D
genetic discrimination
Grounded Theory
Health Care System
heart center
Heart Diseases -- Mortality
Human
Human Tissue
Insurance
interrater reliability
Journal Of Investigative Medicine
Magnus D
Perception
Privacy
Prognosis
Resource Allocation
Semi Structured Interview
sequence analysis
Surgery
Tang R
Transplantation
Trust
Uncertainty
-
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.2019.0015" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1089/jayao.2019.0015</a>
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Title
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"It Could Have Been Me": An Interpretive Phenomenological Analysis of Health Care Providers' Experiences Caring for Adolescents and Young Adults with Terminal Cancer
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
adult; article; Canada; clinician; controlled study; health care delivery; health care personnel; human; nurse; semi structured interview; terminal care; uncertainty; wellbeing; young adult
Creator
An entity primarily responsible for making the resource
Tutelman P R; Drake E K; Urquhart R
Description
An account of the resource
Purpose: Adolescents and young adults (AYAs) with terminal cancer are a marginalized population with unique medical and psychosocial needs. AYAs commonly report challenges with their health care experiences, however, little is known about the experiences of the health care providers (HCPs) who deliver this specialized care. The purpose of the current study was to understand HCPs' experiences caring for AYAs with terminal cancer.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jayao.2019.0015" target="_blank" rel="noreferrer noopener">10.1089/jayao.2019.0015</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
Adult
Article
Canada
Clinician
Controlled Study
Drake E K
Health Care Delivery
Health Care Personnel
Human
Journal of adolescent and young adult oncology.
Nurse
Oncology 2019 List
Semi Structured Interview
Terminal Care
Tutelman P R
Uncertainty
Urquhart R
Wellbeing
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
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/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1002/pbc.27713</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
The 'good death' in pediatric oncology
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adult; advanced cancer; advanced practice provider; aged; avoidance behavior; childhood cancer; clergy; clinical article; cohort analysis; conference abstract; content analysis; controlled study; female; genetic transcription; human; male; medical staff; music; pediatric hospital; physiotherapist; prospective study; semi structured interview; software; sudden death; terminal care; young adult
Creator
An entity primarily responsible for making the resource
Taylor M; Barton K; Rosenberg A
Description
An account of the resource
Background: Empirical descriptions of a 'good death' exist for older adults with cancer, and these have served as the foundation for providing quality end of life care. In contrast, little is known about what, if anything, constitutes a 'good death' from the perspective of Adolescents and Young Adults (AYAs) with advanced cancer, their caregivers, or their medical teams. Pediatric oncology clinicians care for numerous patients at the end of life and can offer a breadth of insight regarding these difficult situations. Incorporating clinician experience can identify common pitfalls as well as successful strategies to inform and improve the delivery of patientcentered end of life care. Ultimately, understanding the intersection between patient, family, and provider values is critical to providing high quality end of life care for AYAs. This study provides a first step toward achieving this goal. Objective(s): This sub-analysis is part of a larger project that includes AYA patients, their parents, and bereaved parents. The objective of the present analysis was to identify factors that healthcare clinicians considered important at the end of life for AYA patients and their families. Design/Method: In this prospective qualitative cohort study, semi-structured interviews were conducted with n = 19 (74% female) oncology medical staff at a large academic pediatric hospital. Staff members included physicians (n = 7), advanced practice providers (n = 6), and other multidisciplinary providers including physical therapists, music/art therapists, and chaplains (n = 5). Interviews were audiorecorded verbatim, de-identified, and transcribed. Two primary coders conducted content analyses to identify relevant themes related to quality end of life care. Coding was reconciled iteratively with each transcript to informsubsequent thematic development and ensure saturation. Data were analyzed using ATLAS.ti software. Result(s): Twenty-seven major themes and 66 sub-themes emerged from provider interviews. Major themes included 'Acceptance,' 'Communication,' 'Meeting Families Where They Are,' and 'Protection.' Providers identified early and transparent communication within families, parental acceptance, and AYA/families maintaining a sense of control as features of a 'good death.' Lack of open communication, an unexpected/sudden death, and family denial or avoidance correlated with providers' experiences of a 'bad death.' Conclusion(s): Healthcare clinicians agree that compassionate and transparent communication are common denominators in good end of life care for AYAs with cancer. These insights may help clinicians caring for patients during a very difficult period of the cancer care trajectory. Future analysis of patient and parent interviews will guide recommendations for the practice of end of life care that is most aligned with patient/family values.
Identifier
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<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</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).
2019
Adult
Advanced Cancer
advanced practice provider
Aged
avoidance behavior
Barton K
Childhood Cancer
Clergy
Clinical Article
Cohort Analysis
conference abstract
Content Analysis
Controlled Study
Female
genetic transcription
Human
Male
Medical Staff
music
Oncology 2019 List
Pediatric Blood and Cancer
Pediatric Hospital
physiotherapist
Prospective Study
Rosenberg A
Semi Structured Interview
Software
sudden death
Taylor M
Terminal Care
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
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.2018.0154" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1089/jayao.2018.0154</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
An Exploratory Study into the Experience of Health Care Professionals Caring for Adolescents and Young Adults with Incurable Cancer
Publisher
An entity responsible for making the resource available
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; Australia; cancer center; challenges; enablers; exploratory research; health care personnel; health care professionals; human; incurable disease; multidisciplinary; semi structured interview; young adult
Creator
An entity primarily responsible for making the resource
Berger I; Thompson K; Joubert L
Description
An account of the resource
Adolescents and young adults 15 to 25 years of age with incurable cancer are a unique patient group. There is growing evidence of the emotionally taxing nature of this work, yet limited understanding of the health care professional experience across professional disciplines. This exploratory study, comprising in-depth semistructured interviews, undertaken at a major cancer center in Melbourne, Australia, describes the challenges facing health care professionals and the factors enabling them to deliver care with greater confidence. The findings provide a platform for further research with key recommendations to enhance the delivery of care to young people with a life-limiting cancer diagnosis.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jayao.2018.0154" target="_blank" rel="noreferrer noopener">10.1089/jayao.2018.0154</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).
2019
Adolescent
Adult
Article
Australia
Berger I
cancer center
challenges
enablers
Exploratory Research
Health Care Personnel
Health care professionals
Human
incurable disease
Joubert L
Journal of adolescent and young adult oncology.
multidisciplinary
Oncology 2019 List
Semi Structured Interview
Thompson K
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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.jpainsymman.2018.10.418" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1016/j.jpainsymman.2018.10.418</a>
Dublin Core
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Title
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The Quality of Life of Children with Advanced Cancer: The Perspective of Children and Parents
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
advanced cancer; child; conference abstract; human; interdisciplinary communication; oncology; palliative therapy; physical well-being; pleasure; qualitative research; quality of life assessment; semi structured interview; thematic analysis
Creator
An entity primarily responsible for making the resource
Avoine-Blondin J; Fasse L; Lopez C; Daoust L; Humbert N; Duval M; Sultan S
Description
An account of the resource
Objective: Quality of Life (QoL) is the core of pediatric palliative care (PPC). The evaluation of QoL allows the adjustment of patient care. However, it remains difficult for clinicians to measure it in this population because there is very little empirical data on this topic. In order to identify dimensions of QoL in this context, we have, in a previous study, interviewed professionals who accompanied children with advanced cancer. The results highlighted the traditional dimensions of physical, psychological and social well-being, as well as original dimensions such as pleasure and the present moment. However, to provide an effective understanding of QoL, it is essential to capture the perspective of children and parents. This study aims to describe the QoL in the context of PPC in oncology according to children's and parents' the representations.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.418" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.418</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).
2018
Advanced Cancer
Avoine-Blondin J
Child
conference abstract
Daoust L
Duval M
Fasse L
Human
Humbert N
Interdisciplinary Communication
Journal of Pain and Symptom Management
Lopez C
Oncology
Oncology 2019 List
Palliative Therapy
physical well-being
pleasure
Qualitative Research
quality of life assessment
Semi Structured Interview
Sultan S
Thematic Analysis
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
October 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
October 2019 List
URL Address
<a href="http://doi.org/10.23736/S1973-9087.19.05474-1" target="_blank" rel="noreferrer noopener">http://doi.org/10.23736/S1973-9087.19.05474-1</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The impact of home-based physical rehabilitation program on parents' experience with children in palliative care: a qualitative study
Publisher
An entity responsible for making the resource available
European journal of physical and rehabilitation 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
adult; article; child; human; palliative therapy; genetic transcription; qualitative research; thematic analysis; home environment; pain; quality of life; education; young adult; semi structured interview; practice guideline; Spain
Creator
An entity primarily responsible for making the resource
Rico-Mena P; Palacios-Cena D; Martino-Alba R; Chocarro-Gonzalez L; Gueita-Rodriguez J
Description
An account of the resource
BACKGROUND: Pediatric palliative care programs aim to improve the quality of life of children with severe life-threatening illnesses, and that of their families. Although rehabilitation and physical therapy provides a valuable tool for the control of symptoms, it has been poorly researched to date. Since the family represents such a fundamental support in these cases, it is important to deepen our understanding regarding the value of implementing rehabilitation programs from the parents' perspective. AIM: The aim of this paper was to explore parents' experiences regarding the implementation of a physical rehabilitation program in pediatric palliative care. DESIGN: A qualitative methodology was chosen. SETTING: The unit of pediatric palliative care at the Hospital Nino Jesus (Madrid, Spain). POPULATION: The inclusion criteria were: 1) parents of children, irrespective of their diagnosis; 2) integrated within the program of palliative care at the time of study; 3) aged between 0-18 years; 4) must be receiving Home-Based Rehabilitation Program by the Pediatric Palliative Care team. Fourteen parents were included. METHOD(S): Purposeful sampling method was implemented. Data collection consisted of unstructured and semi-structured interviews. A thematic analysis was performed to interpret transcripts. Guidelines for conducting qualitative studies established by the Consolidated Criteria for Reporting Qualitative Research were followed. RESULT(S): Three main themes were identified: 1) the meaning of physical rehabilitation to parents; 2) physical rehabilitation as an opportunity for patients to stay in their home environment; and 3) home-based physical rehabilitation as part of the families' social environment. CONCLUSION(S): The main needs of a home physical rehabilitation program are to decrease pain and suffering, together with improving family education and training. CLINICAL REHABILITATION IMPACT: The experience of rehabilitation programs at home is essential in order to improve both the quality of life and the quality of care of affected children and parents.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.23736/S1973-9087.19.05474-1" target="_blank" rel="noreferrer noopener">10.23736/S1973-9087.19.05474-1</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Adult
Article
Child
Chocarro-Gonzalez L
Education
European journal of physical and rehabilitation medicine
genetic transcription
Gueita-Rodriguez J
home environment
Human
Martino-Alba R
October 2019 List
Pain
Palacios-Cena D
Palliative Therapy
Practice Guideline
Qualitative Research
Quality Of Life
Rico-Mena P
Semi Structured Interview
Spain
Thematic Analysis
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
October 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
October 2019 List
URL Address
<a href="https://academic.oup.com/pch/article/24/Supplement_2/e6/5507203" target="_blank" rel="noreferrer noopener">https://academic.oup.com/pch/article/24/Supplement_2/e6/5507203</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 experiences of bereaved family caregivers with advance care planning for children with medical complexity
Publisher
An entity responsible for making the resource available
Paediatrics and Child Health (Canada)
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
death; child; female; human; male; genetic transcription; clinical article; health care personnel; advance care planning; conference abstract; caregiver; human tissue; consultation; perception; semi structured interview; content analysis; conversation; informed consent; personal experience
Creator
An entity primarily responsible for making the resource
Lord S; Moore C; Netten K; Amin R; Rappaport A; Hellman J; Cohen E; Orkin J
Description
An account of the resource
BACKGROUND: Medical technologies and technological advances have resulted in a growing number of children with medical complexity (CMC), many of whom would not have survived previously. Despite these advances CMC are still at high risk of morbidity and mortality during childhood. Advance Care Planning (ACP) is defined by the Canadian Paediatric Society as "the process of discussing life-sustaining treatments and establishing long-term care goals." Currently the pediatric literature regarding ACP has been largely limited to the intensive care setting and the oncology population. There is a dearth of information focussing on ACP for CMC and that includes bereaved family caregiver's views. Bereaved caregivers have the unique ability to reflect upon ACP through their child's whole disease course and end of life experience. OBJECTIVE(S): To explore the ACP experiences of bereaved family caregivers of CMC who have experienced the entire illness trajectory, including their child's death. DESIGN/METHODS: A qualitative approach was applied, allowing for in-depth data collection through semi-structured interviews. Purposive sampling was used to recruit bereaved caregivers of CMC until thematic saturation was reached. The interview guide was developed through expert consultation and was refined iteratively throughout the interviews. Questions assessed caregivers' experiences with ACP discussions, their feelings about those conversations and their perceptions about whether ACP affected the end of life experience. Each participant provided written, informed consent and interviews were recorded and transcribed verbatim. Three research team members used content analysis to independently code the interviews. RESULT(S): 13 bereaved caregivers of CMC completed 12 interviews ranging from 40-80 minutes in length. All caregivers of CMC had participated in ACP discussions and sometimes found them to be overwhelming and frustrating in the moment. However, all caregivers reported that they now understand and appreciate the importance of the discussions. Four major themes emerged from the data describing caregiver's feelings and experiences regarding Advance Care Planning: 1) influencers of the ACP experience, 2) positive experiences, 3) negative experiences and 4) the influence of ACP on end of life. CONCLUSION(S): Bereaved caregivers provided a unique perspective, highlighting the importance and the benefits of ACP discussions. They also revealed various ways in which ACP conversations could be improved. These insights will be helpful in guiding educational tools for health care providers working with CMC in the future.
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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
Advance Care Planning
Amin R
Caregiver
Child
Clinical Article
Cohen E
conference abstract
Consultation
Content Analysis
Conversation
Death
Female
genetic transcription
Health Care Personnel
Hellman J
Human
Human Tissue
Informed Consent
Lord S
Male
Moore C
Netten K
October 2019 List
Orkin J
Paediatrics and Child Health (Canada)
Perception
Personal Experience
Rappaport A
Semi Structured Interview
-
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/10.1186/s12887-019-1569-5" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12887-019-1569-5</a>
Dublin Core
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Title
A name given to the resource
Decision-making at the limit of viability: The Austrian neonatal choice context
Publisher
An entity responsible for making the resource available
BMC 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
article; human; palliative therapy; controlled study; shared decision making; systematic review; nervous system malformation; newborn; statistics; Austria; Choice context; Communication strategies; Decision-making; ethicist; framing bias; head; high income country; Limit of viability; neonatologist; neonatology; Neonatology; nicu; pregnancy; prematurity; semi structured interview
Creator
An entity primarily responsible for making the resource
Stanak M; Hawlik K
Description
An account of the resource
Background: We aimed to explore the shared decision-making context at the limit of viability (weeks 22-25 of gestation) through analyzing neonatologist's communication strategies with parents and their possible impact on survival and neurodevelopmental impairment (NDI) outcomes. Method(s): A mixed methods approach was applied where a systematic literature search and in-depth semi-structured interviews with five heads of neonatology departments and one clinical ethicist from the Austrian context were integrated into a literature review. The aim was to identify decision practice models and the choice context specific to Austria. Result(s): Professional biases, parental understanding, and the process of information giving were identified as aspects possibly influencing survival and NDI outcomes. Institutions create self-fulfilling prophecies by recommending intensive/palliative care based upon their institutional statistics, yet those vary considerably among high-income countries. Labelling an extremely preterm (EP) infant by the gestational week was shown to skew the estimates for survival while the process of information giving was shown to be subject to framing effect and other cognitive biases. Conclusion(s): Communication strategies of choice options to parents may have an impact on the way parents decide and hence also on the outcomes of EP infants. Copyright ďż˝ 2019 The Author(s).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12887-019-1569-5" target="_blank" rel="noreferrer noopener">10.1186/s12887-019-1569-5</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
Austria
Bmc Pediatrics
Choice context
Communication strategies
Controlled Study
Decision-making
ethicist
framing bias
Hawlik K
head
high income country
Human
Limit of viability
Neonatologist
Neonatology
nervous system malformation
Newborn
Nicu
Palliative Therapy
Pregnancy
Prematurity
Semi Structured Interview
shared decision making
Stanak M
Statistics
Systematic Review
-
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/10.1097/NJH.0000000000000576" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/NJH.0000000000000576</a>
Dublin Core
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Title
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Interdisciplinary Perspectives on the Value of Massage Therapy in a Pediatric Hospice
Publisher
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Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association.
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; child; female; human; male; controlled study; thematic analysis; clinical article; staff; comfort; perception; clinician; hospice care; massage; semi structured interview; accident prevention; human dignity; leisure; rest; self care
Creator
An entity primarily responsible for making the resource
Egeli D; Bainbridge L; Miller T; Potts J
Description
An account of the resource
Canuck Place Children's Hospice in Vancouver, Canada, has been hosting a massage therapy practicum within the hospice since 2011. The practicum is delivered by upper-level massage therapy students who are supervised by a registered massage therapist and clinical instructor through West Coast College of Massage Therapy. This study aimed to explore clinicians' perspectives on the value of providing massage therapy to support children in hospice care, their families, and staff. The research participants (n = 6) comprised Canuck Place clinicians who have experience with the massage therapy practicum. In this descriptive phenomenological inquiry, semistructured interviews and thematic analysis were used. The findings demonstrated that Canuck Place clinicians valued the massage therapy practicum for its practical support in terms of creating access to massage therapy and self-care in the hospice. Massage therapy was also valued for supporting physical wellness (injury prevention/maintenance and symptom management) and psychosocial wellness (supporting dignity, interconnection, intraconnection, and rest/relaxation and providing a source of comfort/nurturing). This study is the first to explore clinicians' perceptions of massage therapy within a pediatric hospice and contributes to understanding massage therapy's potential role in the support of children, families, and staff within a hospice setting.
Identifier
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<a href="http://doi.org/10.1097/NJH.0000000000000576" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000576</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
accident prevention
Article
August 2019 List
Bainbridge L
Child
Clinical Article
Clinician
Comfort
Controlled Study
Egeli D
Female
Hospice Care
Human
Human Dignity
Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association.
leisure
Male
Massage
Miller T
Perception
Potts J
rest
Self Care
Semi Structured Interview
Staff
Thematic Analysis
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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.
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August 2019 List
URL Address
<a href="http://doi.org/10.1002/ppul.24073" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ppul.24073</a>
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Title
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Exploring knowledge and perceptions of palliative care to inform integration of palliative care education into cystic fibrosis care
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Pediatric Pulmonology
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; female; human; male; palliative therapy; clinical article; palliative care; health care personnel; priority journal; caregiver; parent; perception; communication; semi structured interview; adolescence; attitude to health; cystic fibrosis; health education; lung fibrosis; patient education; qualitative analysis
Creator
An entity primarily responsible for making the resource
Dellon E P; Helms S W; Hailey C E; Shay R; Carney S D; Schmidt H J; Brown D E; Prieur M G
Description
An account of the resource
Background: Individuals with cystic fibrosis (CF) face the challenges of managing a chronic, progressive disease. While palliative care is a standard of care in serious illnesses, there are no guidelines for its incorporation into CF care. Patients with CF, caregivers, and CF care providers may lack knowledge about palliative care and perceive barriers to integrated care. Objective(s): To: 1) explore knowledge and perceptions of palliative care among patients with CF, caregivers, and CF care providers; 2) solicit opinions about incorporating palliative care into routine CF care; and 3) solicit recommendations for CF-specific palliative care education for patients and caregivers. Method(s): We conducted semi-structured interviews with adult patients with CF, parents of adolescents with CF, and CF care providers to assess knowledge and perceptions of palliative care. Discussion included suggestions for palliative care education and integration into CF care. The sample was characterized using summary statistics. Key themes were identified using qualitative content analysis. Result(s): Ten patients with CF, ten parents, and eight CF care providers participated. Many had minimal knowledge of palliative care and endorsed the association with end of life as a barrier to palliative care, but after learning more about palliative care, thought it could be helpful, and should be introduced earlier. Conclusion(s): In this single center study, many patients with CF, caregivers, and providers lacked knowledge about palliative care. These findings warrant replication in a larger, multisite study to inform palliative care educational interventions as a step toward consistent integration of palliative care into routine CF care. Copyright ďż˝ 2018 Wiley Periodicals, Inc.
Identifier
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<a href="http://doi.org/10.1002/ppul.24073" target="_blank" rel="noreferrer noopener">10.1002/ppul.24073</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
Adolescence
Adolescent
Adult
Article
Attitude To Health
August 2019 List
Brown D E
Caregiver
Carney S D
Clinical Article
Communication
Cystic Fibrosis
Dellon E P
Female
Hailey C E
Health Care Personnel
Health Education
Helms S W
Human
lung fibrosis
Male
Palliative Care
Palliative Therapy
Parent
Patient Education
Pediatric Pulmonology
Perception
Prieur M G
Priority Journal
Qualitative Analysis
Schmidt H J
Semi Structured Interview
Shay 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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June 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
June 2019 List
URL Address
<a href="https://smw.ch/fileadmin/content/supplements/SMW_Suppl_222.pdf" target="_blank" rel="noreferrer noopener">https://smw.ch/fileadmin/content/supplements/SMW_Suppl_222.pdf</a>
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Title
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A demanding act of love: Barriers and challenges in communication and decision-making for infants at the limits of viability
Publisher
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Swiss Medical Weekly
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
empathy; infant; decision making; semi structured interview; delivery room; responsibility; university hospital; parental attitude; prematurity; conference abstract; human; child; patient care; honesty
Creator
An entity primarily responsible for making the resource
Hendriks M J; Abraham A
Description
An account of the resource
Introduction: The birth of an extreme preterm infant often comes unexpectedly. Decisions, then, must often be made quickly and under circumstances that can be emotionally stressful for parents or morally burdensome for health care professionals. In the past decades, more emphasis has been placed on parental involvement in the decisionmaking, but a shared approach has remained understudied and difficult to implement in practice. Method(s): In order to explore parental attitudes and values in the end-of-life decision-making process, we conducted 13 qualitative semi-structured interviews with 20 parents. We recruited parents of extremely premature infants who were born alive and died in the delivery room or in the NICU at the University Hospital Zurich in the years 2013-2015. Result(s): Parents described factors that resulted in either a smooth or friction-laden decisional process. Some elements favored good communication between parents and the health care team, such as transparent information, empathy and honesty. Elements such as lacking of transparent information and lacking continuity of care discouraged good communication. Parents experienced the end-of-life decision-making process in divergent ways. Although most parents did consider to be involved in decision-making, they were nevertheless satisfied with the process. In contrast, few parents were involved in the decision-making. They appreciated and valued the possibility to take part in the decision, but they did not perceive the decision as an act of autonomy. Rather they felt it was part of their parental responsibility and a demanding act of love. Conclusion(s): The (non)involvement of parents in the end-of-life decision-making of their infant revealed that parental decision-making preferences are not homogenous, but highly case- and contextdependent. Health care professionals, who are closest to the parents, should aim to avoid either of these two opposites. Instead, they should enable and encourage parents' relationship with their child and create a space where parental preferences for involvement in end-of-life decisions can be assessed. Only then, it is considered a shared commitment.
2017
Abraham A
Child
conference abstract
Decision Making
Delivery Room
Empathy
Hendriks M J
Honesty
Human
Infant
June 2019 List
Parental Attitude
Patient Care
Prematurity
responsibility
Semi Structured Interview
Swiss Medical Weekly
University Hospital
-
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 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
March 2019 List
URL Address
<a href="http://doi.org/10.12968/ijpn.2019.25.1.19" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.12968/ijpn.2019.25.1.19</a>
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Title
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A grounded theory study of the perceptions and meanings associated with gastrostomies among parents of children with palliative needs
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
2019
Subject
The topic of the resource
Spain; semi structured interview; perception; palliative therapy; genetic transcription; human; article; child; problem solving; patient care; decision making; grounded theory; stomach tube
Creator
An entity primarily responsible for making the resource
Chocarro L; Moreno A; Barcelo M; Martino R; Gonzalez P
Identifier
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<a href="http://doi.org/10.12968/ijpn.2019.25.1.19" target="_blank" rel="noreferrer noopener"> 10.12968/ijpn.2019.25.1.19</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).
Description
An account of the resource
BACKGROUND:: There is few literature on the difficulties and different meanings of gastrostomy tubes (GST) for parents of children with palliative needs, and what specific palliative care teams contribute to this process. AIM:: To explore the process of information in the decision of performing a gastrostomy and the meanings that parents of children with palliative needs build around them. DESIGN:: Semi-structured interviews which were transcribed and analysed using Grounded Theory. SETTING/PARTICIPANTS:: Parents and caretakers of children admitted in Paediatric Palliative Care Unit of Madrid Autonomous Community (Spain) whose children bore a gastrostomy device.
2019
Article
Barcelo M
Child
Chocarro L
Decision Making
genetic transcription
Gonzalez P
Grounded Theory
Human
International Journal of Palliative Nursing
March 2019 List
Martino R
Moreno A
Palliative Therapy
Patient Care
Perception
Problem Solving
Semi Structured Interview
Spain
stomach tube
-
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
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/10.1080/10410236.2017.1399508" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1080/10410236.2017.1399508</a>
Dublin Core
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Title
A name given to the resource
Communication and the Appraisal of Uncertainty: Exploring Parents' Communication with Credible Authorities in the Context of Chronic Childhood Illness
Publisher
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Health communication
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
semi structured interview; terminal care; diagnostic error; human; article; child; female; male; diagnosis; childhood; clinical article; uncertainty; congenital blood vessel malformation
Creator
An entity primarily responsible for making the resource
Kerr AM; Harrington NG; Scott AM
Description
An account of the resource
Individuals with chronic illnesses must manage long-term uncertainty as they cope with the ways the illness influences their lives. In the context of pediatric illnesses, parents must manage uncertainty during the diagnosis and treatment of their child's illness. It is common for children with complex chronic illnesses to see multiple specialists for the treatment of their condition. While previous research has explored parents' uncertainty during a child's diagnosis and during end-of-life care, less is known about these experiences when the child is referred to a team of specialists for treatment. The aim of the current study was to explore how specialists, as credible authorities, influence parents' uncertainty during parents' first visit to a multidisciplinary clinic for the care of their child's complex chronic illness. Data were collected through semi-structured interviews with 29 parents after their child's first visit to a vascular anomaly clinic at a large Midwestern children's hospital. The results suggest parents' communication with credible authorities facilitates effective uncertainty management primarily through the mechanism of uncertainty reappraisal. The results also suggest that specialists, as credible authorities, are a key mechanism in the appraisal of uncertainty for conditions that are often misdiagnosed and mismanaged.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/10410236.2017.1399508" target="_blank" rel="noreferrer noopener">10.1080/10410236.2017.1399508</a>
2019
Article
Child
childhood
Clinical Article
congenital blood vessel malformation
Diagnosis
Diagnostic Error
February 2019 List
Female
Harrington NG
Health Communication
Human
Kerr AM
Male
Scott AM
Semi Structured Interview
Terminal Care
Uncertainty
-
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
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>
Dublin Core
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Title
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Exploring Resident Physicians' Experiences Practicing in Pediatric Palliative Care: A Hermeneutic Method of Inquiry
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
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
An unambiguous reference to the resource within a given context
<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
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.2018.10.419" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.419</a>
Dublin Core
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Title
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Challenges in Pediatric Advance Care Discussions Between Health Care Professionals and Parents of Children with a Life-Limiting Condition: A Qualitative Pilot Study
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
advance care planning; death; Germany; semi structured interview; shared decision making; pilot study; morality; conference abstract; human; child; female; male; clinical article; palliative therapy; conversation
Creator
An entity primarily responsible for making the resource
Hein K; Monz A; Daxer M; Heitkamp N; Knochel K; Jox R; Borasio GD; Fuehrer M
Description
An account of the resource
Objectives: Research has shown that advance care planning concepts for adults need to be revised and adapted to be applicable to pediatric situations. A consistent approach to pediatric advance care planning (pACP) is still missing. The study aimed to (1) identify challenges during pediatric advance care discussions and (2) explore the perception of participants about pACP with the final goal of (3) developing a pACP conversation guideline.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.419" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.419</a>
2018
Advance Care Planning
Borasio GD
Child
Clinical Article
conference abstract
Conversation
Daxer M
Death
February 2019 List
Female
Fuehrer M
Germany
Hein K
Heitkamp N
Human
Journal of Pain and Symptom Management
Jox R
Knochel K
Male
Monz A
Morality
Palliative Therapy
Pilot Study
Semi Structured Interview
shared decision making
-
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 Developing World List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Developing World 2018 List
URL Address
<a href="http://doi.org/10.1097/NCC.0000000000000441" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1097/NCC.0000000000000441</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
Spirituality among parents of children with cancer at AUBMC
Publisher
An entity responsible for making the resource available
Cancer Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
spiritual care; semi structured interview; caregiver; cancer center; childhood cancer; health care personnel; powerlessness; genetic transcription; conference abstract; human; child; female; male; clinical article; palliative therapy; religion; fear; Lebanon; social needs
Creator
An entity primarily responsible for making the resource
Doumit MA; Majdalani M; Saab R; Rahi A
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/NCC.0000000000000441" target="_blank" rel="noreferrer noopener">10.1097/NCC.0000000000000441</a>
2016
cancer center
Cancer Nursing
Caregiver
Child
Childhood Cancer
Clinical Article
conference abstract
Developing World 2018 List
Doumit MA
Fear
Female
genetic transcription
Health Care Personnel
Human
Lebanon
Majdalani M
Male
Palliative Therapy
Powerlessness
Rahi A
Religion
Saab R
Semi Structured Interview
social needs
Spiritual 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
2018 Developing World List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Developing World 2018 List
URL Address
<a href="http://doi.org/10.1097/01.ccm.0000528499.57151.25" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1097/01.ccm.0000528499.57151.25</a>
Dublin Core
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Title
A name given to the resource
Pediatric intensivist end-of-life practices and attitudes in Vietnam
Publisher
An entity responsible for making the resource available
Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
qualitative analysis; semi structured interview; terminal care; chronic disease; education; major clinical study; life sustaining treatment; cultural factor; medical technology; quantitative analysis; human; child; female; male; perception; palliative therapy; resuscitation; doctor nurse relation; Viet Nam; chronic patient; pediatric hospital; tertiary health care; Vietnamese; intensivist
Creator
An entity primarily responsible for making the resource
Schiltz B; Liu J; Fadadu P; Kumbamu A; Phan P; Tran X; Ouellette Y
Identifier
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<a href="http://doi.org/10.1097/01.ccm.0000528499.57151.25" target="_blank" rel="noreferrer noopener">10.1097/01.ccm.0000528499.57151.25</a>
2018
Child
Chronic Disease
Chronic Patient
Critical Care Medicine
Cultural Factor
Developing World 2018 List
doctor nurse relation
Education
Fadadu P
Female
Human
Intensivist
Kumbamu A
Life Sustaining Treatment
Liu J
Major Clinical Study
Male
Medical Technology
Ouellette Y
Palliative Therapy
Pediatric Hospital
Perception
Phan P
Qualitative Analysis
quantitative analysis
Resuscitation
Schiltz B
Semi Structured Interview
Terminal Care
tertiary health care
Tran X
Viet Nam
Vietnamese
-
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/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216318769196</a>
Dublin Core
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Title
A name given to the resource
Qualitative evaluation of the impact of a paediatric palliative care family support volunteering project
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
human; child; female; male; palliative therapy; controlled study; major clinical study; conference abstract; sibling; quality of life; human experiment; semi structured interview; skill; volunteer; staff; questionnaire; qualitative analysis; gardening; housekeeping; leadership; shopping
Creator
An entity primarily responsible for making the resource
Scott R; Chambers L; McNamara K
Description
An account of the resource
Background: Families caring for a child with a life limiting condition not only provide 24 hour complex care but also must care for siblings and cope with everyday tasks. Research suggests families could benefit from 'domestic support' (Fraser et al, 2015). This abstract reports on a qualitative evaluation of the second phase of a pilot project offering volunteer home support to such families. Three pilot sites were involved including voluntary and NHS community children's palliative care (CPC) teams. Method: Qualitative questionnaires were completed by families, staff, volunteers and strategic leaders before and after the pilot, followed by small number of semi-structured interviews to explore experiences in more depth. Results: Volunteers provided a range of support including, housework, gardening, shopping homework with siblings and taking siblings to and from school. Sixty volunteers were recruited and 62 families matched with volunteers. As a result of volunteer support, 100% of families reported improvement in quality of life, 95% feeling less stressed and more able to cope with 65% feeling less isolated. All volunteers (100%) felt valued, 84% increased skills and confidence and 92% wished to continue volunteering. The project enabled pilot sites to extend the range of support offered and increased organisational capacity. Volunteers enriched the organisation and brought new ideas and impetus. Volunteers were able to respond quickly and appropriately in crisis situations. Challenges identified included some families feeling that the offer of volunteer help implied that they were not coping, volunteers ' availability not always matching families preferred times and allowing enough time for planning and set up. A set of online resources were developed as part of the project. These include guidance on planning and implementation in different settings are now freely available. Conclusion: This evaluation suggests that families benefit greatly from volunteer support in the home and may be of value to other CPC services considering how too extend their support to families. A subsequent evaluation, with reflections on sustainability replicability is underway.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</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).
2018
August 2018 List
Chambers L
Child
conference abstract
Controlled Study
Female
gardening
housekeeping
Human
Human Experiment
Leadership
Major Clinical Study
Male
McNamara K
Palliative Medicine
Palliative Therapy
Qualitative Analysis
Quality Of Life
Questionnaire
Scott R
Semi Structured Interview
shopping
Sibling
Skill
Staff
Volunteer