1
40
10
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March List 2024
URL Address
<a href="http://doi.org/10.1097/PCC.0000000000001488" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/PCC.0000000000001488</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
Ethical, Cultural, Social, and Individual Considerations Prior to Transition to Limitation or Withdrawal of Life-Sustaining Therapies
Publisher
An entity responsible for making the resource available
Pediatric 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
decision making; ethics; child; child parent relation; critical illness/th [Therapy]; female; human; male; patient participation; pediatric intensive care unit; psychology; social media; terminal care; transcultural care; treatment withdrawal
Creator
An entity primarily responsible for making the resource
Kirsch RE; Balit CR; Carnevale FA; Latour JM; Larcher V
Description
An account of the resource
As part of the invited supplement on Death and Dying in the PICU, we reviewed ethical, cultural, and social considerations for the bedside healthcare practitioner prior to engaging with children and families in decisions about limiting therapies, withholding, or withdrawing therapies in a PICU. Clarifying beliefs and values is a necessary prerequisite to approaching these conversations. Striving for medical consensus is important. Discussion, reflection, and ethical analysis may determine a range of views that may reasonably be respected if professional disagreements persist. Parental decisional support is recommended and should incorporate their information needs, perceptions of medical uncertainty, child's condition, and their role as a parent. Child's involvement in decision making should be considered, but may not be possible. Culturally attuned care requires early examination of cultural perspectives before misunderstandings or disagreements occur. Societal influences may affect expectations and exploration of such may help frame discussions. Hospital readiness for support of social media campaigns is recommended. Consensus with family on goals of care is ideal as it addresses all parties' moral stance and diminishes the risk for superseding one group's value judgments over another. Engaging additional supportive services early can aid with understanding or resolving disagreement. There is wide variation globally in ethical permissibility, cultural, and societal influences that impact the clinician, child, and parents. Thoughtful consideration to these issues when approaching decisions about limitation or withdrawal of life-sustaining therapies will help to reduce emotional, spiritual, and ethical burdens, minimize misunderstanding for all involved, and maximize high-quality care delivery.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/PCC.0000000000001488" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000001488</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
Balit CR
Carnevale FA
Child
Child Parent Relation
Critical Illness/th [therapy]
Decision Making
Ethics
Female
Human
Kirsch RE
Larcher V
Latour JM
Male
March List 2024
Patient Participation
Pediatric Critical Care Medicine
Pediatric Intensive Care Unit
Psychology
social media
Terminal Care
transcultural care
Treatment Withdrawal
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 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
March 2022 List
URL Address
<a href="http://doi.org/10.1097/PCC.0000000000002886" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/PCC.0000000000002886</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
Clinical Reasoning Behind Antibiotic Use in PICUs: A Qualitative Study
Publisher
An entity responsible for making the resource available
Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
antibiotics; Child; clinical reasoning; critical care; qualitative methods
Creator
An entity primarily responsible for making the resource
Fontela PS; Gaudreault J; Dagenais M; Noël KC; Déragon A; Lacroix J; Razack S; Rennick J; Quach C; McNally JD; Carnevale FA
Description
An account of the resource
Objectives: To describe the reasoning processes used by pediatric intensivists to make antibiotic-related decisions. Design: Grounded theory qualitative study. Setting: Three Canadian university-affiliated tertiary medical, surgical, and cardiac PICUs. Patients: Twenty-one PICU physicians. Interventions: None. Measurements and Main Results: We conducted field observation during morning rounds followed by semistructured interviews with participants to examine the clinical reasoning behind antibiotic-related decisions (starting/stopping antibiotics, or treatment duration) made for patients with a suspected/proven bacterial infection. We used a grounded theory approach for data collection and analysis. Thematic saturation was reached after 21 interviews. Of the 21 participants, 10 (48%) were female, 15 (71%) were PICU attending staff, and 10 (48%) had greater than 10 years in clinical practice. Initial clinical reasoning involves using an analytical approach to determine the likelihood of bacterial infection. In case of uncertainty, an assessment of patient safety is performed, which partly overlaps with the use of intuitive clinical reasoning. Finally, if uncertainty remains, physicians tend to consult infectious diseases experts. Factors that override this clinical reasoning process include disease severity, pressure from consultants, and the tendency to continue antibiotic treatment initiated by colleagues. Conclusions: Antibiotic-related decisions for critically ill children are complex, and pediatric intensivists use several clinical reasoning strategies to decrease the uncertainty around the bacterial etiology of infections. However, disease severity and patient safety concerns may overrule decisions based on clinical evidence and lead to antibiotic use. Several cognitive biases were identified in the clinical reasoning processes.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/PCC.0000000000002886" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002886</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).
2022
antibiotics
Carnevale FA
Child
clinical reasoning
Critical Care
Dagenais M
Déragon A
Fontela PS
Gaudreault J
Lacroix J
March 2022 List
McNally JD
Noël KC
Pediatric Critical Care Medicine
Quach C
Qualitative Methods
Razack S
Rennick J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/1367493514540817" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493514540817</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
Communication in pediatric critical care: A proposal for an evidence-informed framework.
Publisher
An entity responsible for making the resource available
Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
An entity primarily responsible for making the resource
Carnevale FA; Farrell C; Cremer R; Seguret S; Canoui P; Leclerc F; Lacroix J; Hubert P
Description
An account of the resource
The aim of this investigation was to conduct a comprehensive examination of communication between parents and health care professionals (HCPs) in the pediatric intensive care unit (PICU). A secondary analysis was performed on data from 3 previous qualitative studies, which included 30 physicians, 37 nurses, and 38 parents in France and Quebec (Canada). All three studies examined a mix of cases where children either survived or died. All data referring to communication between parents (and patients when applicable) and HCPs were examined to identity themes that related to communication. Thematic categories for parents and HCPs were developed. Three interrelated dimensions of communication were identified: (1) informational communication, (2) relational communication, and (3) communication and parental coping. Specific themes were identified for each of these 3 dimensions in relation to parental concerns as well as HCP concerns. This investigation builds on prior research by advancing a comprehensive analysis of PICU communication that includes (a) cases where life-sustaining treatments were withdrawn or withheld as well as cases where they were maintained, (b) data from HCPs as well as parents, and (c) investigations conducted in 4 different sites. An evidence-informed conceptual framework is proposed for PICU communication between parents and HCPs. We also outline priorities for the development of practice, education, and research.
2014-07
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1367493514540817" target="_blank" rel="noreferrer">10.1177/1367493514540817</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2014
Backlog
Canoui P
Carnevale FA
Cremer R
Farrell C
Hubert P
Journal Article
Journal Of Child Health Care
Lacroix J
Leclerc F
Seguret 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
Backlog
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000269399.47060.6d" target="_blank" rel="noreferrer">http://doi.org/10.1097/01.pcc.0000269399.47060.6d</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
Parental involvement in treatment decisions regarding their critically ill child: a comparative study of France and Quebec
Publisher
An entity responsible for making the resource available
Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Child; Female; Humans; Male; Intensive Care Units; Professional-Family Relations; Communication; Paternalism; Qualitative Research; Consumer Satisfaction; Cultural Characteristics; Quebec; Preschool; infant; IM; ICU Decision Making; France; Parents/px [Psychology]; Consumer Participation/px [Psychology]; Critical Illness/th [Therapy]; Nurse's Role/px [Psychology]; Pediatric/og [Organization & Administration]; Physician's Role/px [Psychology]
Creator
An entity primarily responsible for making the resource
Carnevale FA; Canoui P; Cremer R; Farrell C; Doussau A; Seguin MJ; Hubert P; Leclerc F; Lacroix J
Description
An account of the resource
OBJECTIVE: To examine whether physicians or parents assume responsibility for treatment decisions for critically ill children and how this relates to subsequent parental experience. A significant controversy has emerged regarding the role of parents, relative to physicians, in relation to treatment decisions for critically ill children. Anglo-American settings have adopted decision-making models where parents are regarded as responsible for such life-support decisions, while in France physicians are commonly considered the decision makers. DESIGN: Grounded theory qualitative methodology. SETTING: Four pediatric intensive care units (two in France and two in Quebec, Canada). PATIENTS: Thirty-one parents of critically ill children; nine physicians and 13 nurses who cared for their children. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Semistructured interviews were conducted. In France, physicians were predominantly the decision makers for treatment decisions. In Quebec, decisional authority practices were more varied; parents were the most common decision maker, but sometimes it was physicians, while for some decisional responsibility depended on the type of decision to be made. French parents appeared more satisfied with their communication and relationship experiences than Quebec parents. French parents referred primarily to the importance of the quality of communication rather than decisional authority. There was no relationship between parents' actual responsibility for decisions and their subsequent guilt experience. CONCLUSIONS: It was remarkable that a certain degree of medical paternalism was unavoidable, regardless of the legal and ethical norms that were in place. This may not necessarily harm parents' moral experiences. Further research is required to examine parental decisional experience in other pediatric settings.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.pcc.0000269399.47060.6d" target="_blank" rel="noreferrer">10.1097/01.pcc.0000269399.47060.6d</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2007
Backlog
Canoui P
Carnevale FA
Child
Communication
Consumer Participation/px [Psychology]
Consumer Satisfaction
Cremer R
Critical Illness/th [therapy]
Cultural Characteristics
Doussau A
Farrell C
Female
France
Hubert P
Humans
ICU Decision Making
IM
Infant
Intensive Care Units
Journal Article
Lacroix J
Leclerc F
Male
Nurse's Role/px [Psychology]
Parents/px [psychology]
Paternalism
Pediatric Critical Care Medicine
Pediatric/og [Organization & Administration]
Physician's Role/px [Psychology]
Preschool
Professional-family Relations
Qualitative Research
Quebec
Seguin MJ
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/1367493507085616" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493507085616</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
Using participant observation in pediatric health care settings: ethical challenges and solutions
Publisher
An entity responsible for making the resource available
Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Creator
An entity primarily responsible for making the resource
Carnevale FA; Macdonald ME; Bluebond-Langner M; McKeever P
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1367493507085616" target="_blank" rel="noreferrer">10.1177/1367493507085616</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2008
2008
Backlog
Bluebond-Langner M
Carnevale FA
Journal Article
Journal Of Child Health Care
Macdonald ME
McKeever P
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/1367493508088552" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493508088552</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
What we know (and do not know) about raising children with complex continuing care needs
Publisher
An entity responsible for making the resource available
Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Humans; patient care team; Home Nursing; Parents; disabled children; Health Services Needs and Demand; social support; Life Support Care; Pediatric Nursing; Child Care; Cost of Illness; Long-Term Care; Healthcare Disparities; Special
Creator
An entity primarily responsible for making the resource
Carnevale FA; Rehm RS; Kirk S; McKeever P
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1367493508088552" target="_blank" rel="noreferrer">10.1177/1367493508088552</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2008-03
2008
Backlog
Carnevale FA
Child Care
Cost Of Illness
Disabled Children
Health Services Needs And Demand
Healthcare Disparities
Home Nursing
Humans
Journal Article
Journal Of Child Health Care
Kirk S
Life Support Care
Long-Term Care
McKeever P
Parents
Patient Care Team
Pediatric Nursing
Rehm RS
Social Support
Special
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/j.iccn.2004.09.003" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.iccn.2004.09.003</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
A prospective study of adverse reactions to the weaning of opioids and benzodiazepines among critically ill children
Publisher
An entity responsible for making the resource available
Intensive and Critical Care Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Analgesics; Nursing; PedPal Lit; Nonparametric; methods; Opioid/administration & dosage/adverse effects; 13-20% for 4-7 days; 8-13% for 8-14 days; 8% for 15-21 days; Adolescent Age Factors; and 2-4% for more t han 21 days of infusions. The authors recommend that the rate of weaning of opioids and benzodiazepines in critically ill children be tailored to the length of time the child received continuous infusions of these agents.; Benzodiazepines/administration & dosage/adverse effects Child Child; Health Care Statistics; Intravenous Intensive Care Units; methods/standards Critical Illness/therapy Drug Administration Schedule Drug Monitoring/; Newborn Infusions; Pediatric Nursing Assessment Nursing Evaluation Research Pediatric Nursing; Preschool Conscious Sedation/adverse effects/methods/nursing Critical Care/; standards Humans Infant Infant; standards Prospective Studies Quality Assurance; Substance Withdrawal Syndrome/diagnosis/etiology/prevention & control Time Factors
Creator
An entity primarily responsible for making the resource
Ducharme C; Carnevale FA; Clermont MS; Shea S
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.iccn.2004.09.003" target="_blank" rel="noreferrer">10.1016/j.iccn.2004.09.003</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2005
13-20% for 4-7 days
2005
8-13% for 8-14 days
8% for 15-21 days
Adolescent Age Factors
Analgesics
and 2-4% for more t han 21 days of infusions. The authors recommend that the rate of weaning of opioids and benzodiazepines in critically ill children be tailored to the length of time the child received continuous infusions of these agents.
Backlog
Benzodiazepines/administration & dosage/adverse effects Child Child
Carnevale FA
Clermont MS
Ducharme C
Health Care Statistics
Intensive and Critical Care Nursing
Intravenous Intensive Care Units
Journal Article
Methods
methods/standards Critical Illness/therapy Drug Administration Schedule Drug Monitoring/
Newborn Infusions
Nonparametric
Nursing
Opioid/administration & dosage/adverse effects
Pediatric Nursing Assessment Nursing Evaluation Research Pediatric Nursing
PedPal Lit
Preschool Conscious Sedation/adverse effects/methods/nursing Critical Care/
Shea S
standards Humans Infant Infant
standards Prospective Studies Quality Assurance
Substance Withdrawal Syndrome/diagnosis/etiology/prevention & control Time Factors
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/1367493506060209" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493506060209</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 moral experience of parents regarding life-support decisions for their critically-ill children: a preliminary study in France
Publisher
An entity responsible for making the resource available
Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Humans; Intensive Care Units; Grief; Questionnaires; Professional-Family Relations; Health Services Needs and Demand; Communication; Clinical Competence; Qualitative Research; Morals; Hospitals; Nursing Methodology Research; Pediatric; Adaptation; Psychological; decision making; infant; Parents/education/psychology; ICU Decision Making; social support; Physician's Role/psychology; Hospitalized/psychology; Intensive Care/psychology; Guilt; Life Support Care/psychology; Attitude to Health/ethnology; Parental Consent/psychology; Paris
Creator
An entity primarily responsible for making the resource
Carnevale FA; Canoui P; Hubert P; Farrell C; Leclerc F; Doussau A; Seguin MJ; Lacroix J
Description
An account of the resource
The common paediatric critical care practice in France is for physicians (rather than parents) to maintain the ultimate responsibility for lifesupport decisions in children. Some French literature asserts that it is inappropriate for parents to bear such responsibilities because they do not have the required knowledge and should be protected from feeling culpable for such decisions. The aim of this grounded theory preliminary study was to examine the moral experience of parents of critically-ill children that required life-support decisions in France. A convenience purposive sample of seven parents was recruited in Paris. Five principal themes emerged as significant from these interviews: (1) a need for more information
(2) physicians should be responsible for life-support decisions
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1367493506060209" target="_blank" rel="noreferrer">10.1177/1367493506060209</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2006
Adaptation
Attitude to Health/ethnology
Backlog
Canoui P
Carnevale FA
Child
Clinical Competence
Communication
Decision Making
Doussau A
Farrell C
Grief
Guilt
Health Services Needs And Demand
Hospitalized/psychology
Hospitals
Hubert P
Humans
ICU Decision Making
Infant
Intensive Care Units
Intensive Care/psychology
Journal Article
Journal Of Child Health Care
Lacroix J
Leclerc F
Life Support Care/psychology
Morals
Nursing Methodology Research
Parental Consent/psychology
Parents/education/psychology
Paris
Pediatric
Physician's Role/psychology
Professional-family Relations
Psychological
Qualitative Research
Questionnaires
Seguin MJ
Social Support
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2004-1980" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2004-1980</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
Parental perspectives on hospital staff members' acts of kindness and commemoration after a child's death
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Child; Humans; Intensive Care Units; Professional-Family Relations; Death; Hospitals; Pediatric; Non-U.S. Gov't; Research Support; bereavement; Parents/psychology; social support; Hospital; Personnel
Creator
An entity primarily responsible for making the resource
Macdonald ME; Liben S; Carnevale FA; Rennick J; Wolf SL; Meloche D; Cohen SR
Description
An account of the resource
OBJECTIVES: Acts of kindness and commemoration by staff members often follow the death of a patient. Acts include attending funerals, sending sympathy cards, sending cards on birthdays/anniversaries, telephoning/visiting family homes, and attending memorial services. This study explores the significance of these acts for bereaved parents. METHODS: Twelve parents whose children died in the ICU of a tertiary care pediatric hospital were interviewed, to explore their experiences of the death. Investigators reviewed transcripts and observational field notes. Multidisciplinary team triangulation was used to corroborate themes, with cross-case analysis. RESULTS: Three themes emerged regarding parental experiences of staff members' acts, ie, (1) parents placed great importance on the hospital's memorial service and on staff members' presence at the service; (2) parents found it difficult to return to the hospital after the child's death but all attended the memorial service, finding some closure in the return; and (3) parents appreciated receiving cards and greatly valued staff members' efforts to telephone/visit and to attend the funeral. Months later, parents remembered positively which staff members engaged in which activities. Conversely, parents expressed disappointment when staff members did not engage in these activities and/or were absent from memorial/funeral services. CONCLUSIONS: Efforts to support families and to commemorate deceased children are appreciated by bereaved parents. Staff members' absences at commemorative events and a lack of supportive acts are noticed and regretted by families. Staff members and program administrators should attempt to arrange workloads to ensure meaningful contact between staff members and parents during the bereavement period.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2004-1980" target="_blank" rel="noreferrer">10.1542/peds.2004-1980</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2005
Backlog
Bereavement
Carnevale FA
Child
Cohen SR
Death
Hospital
Hospitals
Humans
Intensive Care Units
Journal Article
Liben S
Macdonald ME
Meloche D
Non-U.S. Gov't
Parents/psychology
Pediatric
Pediatrics
Personnel
Professional-family Relations
Rennick J
Research Support
Social Support
Wolf SL
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2005-0789" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2005-0789</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
Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Humans; home care services; Family; caregivers; Respiration; Family Health; Stress; Psychological; Ethics; Artificial
Creator
An entity primarily responsible for making the resource
Carnevale FA; Alexander E; Davis M; Rennick J; Troini Rita
Description
An account of the resource
OBJECTIVE: The growing shift toward home care services assumes that "being home is good" and that this is the most desirable option. Although ethical issues in medical decision-making have been examined in numerous contexts, home care decisions for technology-dependent children and the moral dilemmas that this population confronts remain virtually unknown. This study explored the moral dimension of family experience through detailed accounts of life with a child who requires assisted ventilation at home. This study involved an examination of moral phenomena inherent in (1) the individual experiences of the ventilator-assisted child, siblings, and parents and (2) everyday family life as a whole. METHODS: A qualitative method based on Richard Zaner's interpretive framework was selected for this study. The population of interest for this study was the families of children who are supported by a ventilator or a positive-pressure device at home. Twelve families (38 family members) were recruited through the Quebec Program for Home Ventilatory Assistance. Children in the study population fell into 4 diagnostic groups: (1) abnormal ventilatory control (eg, central hypoventilation syndrome), (2) neuromuscular disorders, (3) spina bifida, and (4) craniofacial or airway abnormalities resulting in upper airway obstruction. All 4 of these diagnostic groups were included in this study. Among the 12 children recruited, 4 received ventilation via tracheostomies, and 8 received ventilation with face masks. All of the latter received ventilation only at night, except for 1 child, who received ventilation 24 hours a day. Family moral experiences were investigated using semistructured interviews and fieldwork observations conducted in the families' homes. RESULTS: Data analysis identified 6 principal themes. The themes raised by families whose children received ventilation invasively via a tracheostomy were not systematically different or more distressed than were families of children with face masks. The principal themes were (1) confronting parental responsibility: parental responsibility was described as stressful and sometimes overwhelming. Parents needed to devote extraordinary care and attention to their children's needs. They struggled with the significant emotional strain, physical and psychological dependence of the child, impact on family relationships, living with the daily threat of death, and feeling that there was "no free choice" in the matter: they could not have chosen to let their child die. (2) Seeking normality: all of the families devoted significant efforts toward normalizing their experiences. They created common routines so that their lives could resemble those of "normal" families. These efforts seemed motivated by a fundamental striving for a stable family and home life. This "striving for stability" was sometimes undermined by limitations in family finances, family cohesion, and unpredictability of the child's condition. (3) Conflicting social values: families were offended by the reactions that they faced in their everyday community. They believe that the child's life is devalued, frequently referred to as a life not worth maintaining. They felt like strangers in their own communities, sometimes needing to seclude themselves within their homes. (4) Living in isolation: families reported a deep sense of isolation. In light of the complex medical needs of these children, neither the extended families nor the medical system could support the families' respite needs. (5) What about the voice of the child? The children in this study (patients and siblings) were generally silent when asked to talk about their experience. Some children described their ventilators as good things. They helped them breathe and feel better. Some siblings expressed resentment toward the increased attention that their ventilated sibling was receiving. (6) Questioning the moral order: most families questioned the "moral order" of their lives. They contemplated how "good things" and "bad things" are determined in their world. Parents described their life as a very unfair situation, yet there was nothing that they could do about it. Finally, an overarching phenomenon that best characterizes these families' experiences was identified: daily living with distress and enrichment. Virtually every aspect of the lives of these families was highly complicated and frequently overwhelming. An immediate interpretation of these findings is that families should be fully informed of the demands and hardships that would await them, encouraging parents perhaps to decide otherwise. This would be but a partial reading of the findings, because despite the enormous difficulties described by these families, they also reported deep enrichments and rewarding experiences that they could not imagine living without. Life with a child who requires assisted ventilation at home involves living every day with a complex tension between the distresses and enrichments that arise out of this experience. The conundrum inherent in this situation is that there are no simple means for reconciling this tension. This irreconcilability is particularly stressful for these families. Having their child permanently institutionalized or "disconnected" from ventilation (and life) would eliminate both the distresses and the enrichments. These options are outside the realm of what these families could live with, aside from the 1 family whose child is now permanently hospitalized, at a tremendous cost of guilt to the family. CONCLUSIONS: These findings make important contributions by (1) advancing our understanding of the moral experiences of this group of families; (2) speaking to the larger context of other technology-dependent children who require home care; (3) relating home care experiences to neonatal, critical care, and other hospital services, suggesting that these settings examine their approaches to this population that may impose preventable burdens on the lives of these children and their families; and (4) examining a moral problem with an empirical method. Such problems are typically investigated through conceptual analyses, without directly examining lived experience. These findings advance our thinking about how we ought to care for these children, through a better understanding of what it is like to care for them and the corresponding major distresses and rewarding enrichments. These findings call for an increased sensitization to the needs of this population among staff in critical care, acute, and community settings. Integrated community support services are required to help counter the significant distress endured by these families. Additional research is required to examine the experience of other families who have decided either not to bring home their child who requires ventilation or withdraw ventilation and let the child die.
2006-01
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2005-0789" target="_blank" rel="noreferrer">10.1542/peds.2005-0789</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2006
Alexander E
Artificial
Backlog
Caregivers
Carnevale FA
Child
Davis M
Ethics
Family
Family Health
home care services
Humans
Journal Article
Pediatrics
Psychological
Rennick J
Respiration
Stress
Troini Rita