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40
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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/10.1177/0030222816629165" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1177/0030222816629165</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
"They Say I Should not Think About It:": A Qualitative Study Exploring the Experience of Infant Loss for Bereaved Mothers in Kumasi, Ghana
Publisher
An entity responsible for making the resource available
Omega (Westport)
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 and dying; bereavement; Male; Infant Newborn; Young Adult; Humans; Adult; Female; Infant; Interviews as Topic; Infant Mortality; Adaptation Psychological; Mothers/ psychology; Ghana; perinatal death; qualitative research; infant mortality; Grief; infant loss; low-resource country; Medically Underserved Area
Creator
An entity primarily responsible for making the resource
Meyer AC; Opoku C; Gold K J
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0030222816629165" target="_blank" rel="noreferrer noopener">10.1177/0030222816629165</a>
2018
Adaptation Psychological
Adult
Bereavement
Death and Dying
Developing World 2018 List
Female
Ghana
Gold K J
Grief
Humans
Infant
Infant Newborn
infant loss
Infant Mortality
Interviews As Topic
low-resource country
Male
Medically Underserved Area
Meyer AC
Mothers/ Psychology
Omega (Westport)
Opoku C
Perinatal Death
Qualitative Research
Young Adult
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1080/07481187.2011.604465" target="_blank" rel="noreferrer">http://doi.org/10.1080/07481187.2011.604465</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
Beyond Knowledge and Skills: Self-Competence in Working with Death, Dying and Bereavement
Publisher
An entity responsible for making the resource available
Death And Dying
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
Health Services
Creator
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Chan W; Tin AF
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/07481187.2011.604465" target="_blank" rel="noreferrer">10.1080/07481187.2011.604465</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
2012
Backlog
Chan W
Death and Dying
Health Services
Journal Article
Tin AF
-
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 2021 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 2021 List
URL Address
<a href="http://doi.org/10.1111/nin.12437" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/nin.12437</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
Beyond technology, drips, and machines: Moral distress in PICU nurses caring for end-of-life patients
Publisher
An entity responsible for making the resource available
Nursing Inquiry
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Canada; moral distress; pediatric intensive care; death and dying; end-of-life care
Creator
An entity primarily responsible for making the resource
Gagnon M; Kunyk D
Description
An account of the resource
Moral distress is an experience of profound moral compromise with deeply impactful and potentially long-term consequences to the individual. Critical care areas are fraught with ethical issues, and end-of-life care has been associated with numerous incidences of moral distress among nurses. One such area where the dichotomy of life and death seems to be at its sharpest is in the pediatric intensive care unit. The purpose of this study was to understand the moral distress experiences of pediatric intensive care nurses when caring for pediatric patients at the end of life. A secondary analysis was undertaken of seven transcripts from registered nurses across six Canadian pediatric intensive care units and produced three themes: under prioritization of child patient dignity, burden of insider knowledge, and environmental constraints on nursing roles and responsibilities. When caring for patients at the end of life, nurses experienced moral distress when a dignified death was not realized. Furthermore, despite interprofessional collaboration efforts in Canada, the concept of silo mentality persists and contributes to moral distress. Organizational involvement is needed to address moral distress in pediatric intensive care nurses both to achieve a dignified death for child patients and in addressing silo mentality.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/nin.12437" target="_blank" rel="noreferrer noopener">10.1111/nin.12437</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).
2021
August 2021 List
Canada
Death and Dying
End-of-life Care
Gagnon M
Kunyk D
Moral Distress
Nursing Inquiry
Pediatric Intensive 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
Special Edition #2 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
Special Edition #2
URL Address
<a href="http://doi.org/10.1111/jocn.15542" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jocn.15542</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
Death of an Infant: Accessing the Voices of Bereaved Mothers to Create Healing
Publisher
An entity responsible for making the resource available
Journal of Clinical Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Bereavement; Coping; Death and Dying; Infant; Nursing; Qualitative Study; Women’s Health
Creator
An entity primarily responsible for making the resource
Hawthorne DM; Joyner R; Gaucher E; Liehr P
Description
An account of the resource
AIMS AND OBJECTIVES: To describe the health challenge for mothers whose infants have died and approaches and resources they used to manage the loss. BACKGROUND: The death of an infant is a devastating experience for families. Bereaved mothers have higher rates of mental distress, loneliness and isolation. While some learn to cope, others remain consumed by grief, unable to function, with persistent affective, cognitive, and physical symptoms. DESIGN: Qualitative design guided by Story Theory. METHODS: In-depth, semi-structured interviews were conducted with mothers 13 to 36 months after the death of their infant. Looking at the present, past, and future mothers were asked to describe the health challenge of losing an infant and approaches used to manage the loss. The COREQ checklist was used. RESULTS: These mothers' experiences were captured in six main themes: "Painful aloneness," "Blemished identity," "Burden of being misunderstood," "Being with and being heard," "Being present and building a future," and "Finding meaning in the tragedy." In sharing their stories, mothers identified positive and negative encounters with healthcare professionals following the death of their infant. CONCLUSION: After losing an infant, mothers experience an array of challenges as they move forward. They describe their approaches used to manage the loss. This included a need to be heard, feel supported, and find meaning in the loss as they try to build a new future. Their stories express a need for health care encounters to be healing, allowing mothers to feel cared for and supported on their unique journeys toward a new sense of wellbeing. RELEVANCE TO CLINICAL PRACTICE: In sharing their stories what matters most to these mothers having lost an infant emerged. The study findings can be used to guide nursing practice, incorporated into healthcare providers bereavement training, increase knowledge and build effective communication skills.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/jocn.15542" target="_blank" rel="noreferrer noopener">10.1111/jocn.15542</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).
2020
2022 Special Edition 2 - Parent Perspectives
Bereavement
Coping
Death and Dying
Gaucher E
Hawthorne DM
Infant
Journal of Clinical Nursing
Joyner R
Liehr P
Nursing
Qualitative Study
Women’s Health
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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.108.3.653" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.108.3.653</a>
<a href="http://pediatrics.aappublications.org/content/108/3/653" target="_blank" rel="noreferrer">http://pediatrics.aappublications.org/content/108/3/653</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
End-of-Life Care for Neonates and Infants: The Experience and Effects of a Palliative Care Consultation Service
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
2001
Subject
The topic of the resource
Palliative Care; infant; Infants; Terminal Illness; end-of-life care; Death and Dying
Creator
An entity primarily responsible for making the resource
Pierucci R; Kirby RS; Leuthner SR
Description
An account of the resource
Objective. Neonates and infants have the highest death rate in the pediatric population, yet there is a paucity of data about their end-of-life care and whether a palliative care service can have an impact on that care. The objective of this study was to describe end-of-life care for infants, including analysis of palliative care consultations conducted in this population. We hypothesized that the palliative care consultations performed had an impact on the infants' end-of-life care. Design. A retrospective chart review using the “End of Life Chart Review” from the Center to Improve Care for the Dying was conducted. The participants were the patients at Children's Hospital of Wisconsin who died at <1 year of age during the 4-year period between January 1, 1994, and December 31, 1997. The patients' place of death, medical interventions performed, and emotionally supportive services provided to families were analyzed. Results. Among the 196 deaths during the study period, 25 (13%) of these infants and families had palliative care consultations. The rate of consultations increased from 5% of the infant deaths in 1994 to 38% of the infant deaths in 1997. Infants of families that received consultations had fewer days in intensive care units, blood draws, central lines, feeding tubes, vasopressor and paralytic drug use, mechanical ventilation, cardiopulmonary resuscitation, and x-rays, and the families had more frequent referrals for chaplains and social services than families that did not have palliative care consultations. Conclusions. This study describes the end-of-life care that infants and their families received. Fewer medical procedures were performed, and more supportive services were provided to infants and families that had a palliative care consultation. This suggests that palliative care consultation may enhance end-of-life care for newborns.
2001-09
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.108.3.653" target="_blank" rel="noreferrer">10.1542/peds.108.3.653</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
2001
Backlog
Death and Dying
End-of-life Care
Infant
Infants
Journal Article
Kirby RS
Leuthner SR
Palliative Care
Pediatrics
Pierucci R
Terminal Illness
-
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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Book Publications
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.
URL Address
<a href="http://search.ebscohost.com/login.aspx?direct=true&db=pzh&AN=2001-00141-005&site=ehost-live" target="_blank" rel="noreferrer">http://search.ebscohost.com/login.aspx?direct=true&db=pzh&AN=2001-00141-005&site=ehost-live</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
Family construction of meaning
Publisher
An entity responsible for making the resource available
Meaning Reconstruction & The Experience Of Loss
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Grief; Family Relations; SSHRC CURA; Family Members; Meaning; Death and Dying; Emotional Adjustment; patterns in family construction of meaning in death of member
Creator
An entity primarily responsible for making the resource
Nadeau JW
Description
An account of the resource
Examines interactive meaning making in families in response to the death of one of their members. Drawing on her extensive grounded theory analysis of scores of family conversations, the author detects and distills patterns of meaning making that transcend purely individual perspectives. (PsycINFO Database Record (c) 2007 APA, all rights reserved). (from the introduction)
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
Book/Book Section
2001
Book/Book Section
Death and Dying
Emotional Adjustment
Family Members
Family Relations
Grief
Meaning
Meaning Reconstruction & The Experience Of Loss
Nadeau JW
patterns in family construction of meaning in death of member
SSHRC CURA
-
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://search.ebscohost.com/login.aspx?direct=true&db=psyh&AN=2004-10494-002&site=ehost-live" target="_blank" rel="noreferrer">http://search.ebscohost.com/login.aspx?direct=true&db=psyh&AN=2004-10494-002&site=ehost-live<br /><br /></a><a href="http://dx.doi.org/10.1080/07481180490254501" target="_blank" id="linkhttp:dx.doi.org10.108007481180490254501" title="http://dx.doi.org/10.1080/07481180490254501" rel="noreferrer">http://dx.doi.org/10.1080/07481180490254501</a><a href="http://search.ebscohost.com/login.aspx?direct=true&db=psyh&AN=2004-10494-002&site=ehost-live" target="_blank" rel="noreferrer"><span> </span><br /></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
Living in the dragon's shadow': Fathers' experiences of a child's life-limiting illness
Publisher
An entity responsible for making the resource available
Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Death; hospice; Fathers; SSHRC CURA; father experience; child's terminal illness; Death and Dying
Creator
An entity primarily responsible for making the resource
Davies B; Gudmundsdottir M; Worden B; Orloff S; Sumner L; Brenner Paul
Description
An account of the resource
Grounded theory methods were used to study the experiences of 8 bereaved fathers whose children received care in a home-based hospice program. In-depth, unstructured interviews were audiotaped, transcribed, and coded for themes and categories. Every aspect of fathers' lives was affected by their experiences, which were described in metaphoric terms as living in a dragon's shadow. Fathers dealt with life in the dragon's shadow by battling the dragon (the illness)--the core social process. Battling was a conscious, active, continuous process that required strength, willpower, and work. Battling occurred within the context of fathers' experiences with fathering and fatherhood and was characterized by 3 aspects: battling with uncertainty, battling with responsibility, and battling with everyday disruption. Fathers were assisted by supportive work environments and by supportive relationships with health care providers. Unsatisfactory relationships with medical personnel compounded fathers' battling with life in the dragon's shadow. (PsycINFO Database Record (c) 2007 APA, all rights reserved) (from the journal abstract)
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
Identifier
An unambiguous reference to the resource within a given context
<a href="http://dx.doi.org/10.1080/07481180490254501" target="_blank" id="linkhttp:dx.doi.org10.108007481180490254501" title="http://dx.doi.org/10.1080/07481180490254501" rel="noreferrer">http://dx.doi.org/10.1080/07481180490254501</a>
2004
Backlog
Brenner Paul
child's terminal illness
Davies B
Death
Death and Dying
Death studies
father experience
Fathers
Gudmundsdottir M
Hospice
Journal Article
Orloff S
SSHRC CURA
Sumner L
Worden B
-
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 2 - Parent Perspectives 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
2024 SE2 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1080/07481187.2017.1334009" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/07481187.2017.1334009</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
Siblings’ voices: A prospective investigation of experiences with a dying child
Publisher
An entity responsible for making the resource available
Death Studies
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 and Dying; dying child; families; Family; Hospitals; life experiences; Life Experiences; peers; Peers; siblings; Siblings
Creator
An entity primarily responsible for making the resource
Eaton RC; Widger K; Beaune L; Neville A; Cadell S; Steele R; Rapoport A; Rugg M; Barrera M
Description
An account of the resource
Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal, qualitative study over 2 years using interpretive descriptive methodology to understand siblings’ perspectives when a brother or sister was dying at home or in hospital. The insights from the 10 siblings revealed complex experiences, both personal and with the ill child, their families, and peers. These experiences were paradoxically sources of strain and of support, revealing the importance of validation and normalization in assisting siblings to successfully navigate the experience. (PsycINFO Database Record (c) 2019 APA, all rights reserved)
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/07481187.2017.1334009" target="_blank" rel="noreferrer noopener">10.1080/07481187.2017.1334009</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
2024 SE2 - Parent Perspectives
Barrera M
Beaune L
Cadell S
Death and Dying
Death studies
dying child
Eaton RC
Families
Family
Hospitals
Life Experiences
Neville A
peers
Rapoport A
Rugg M
Siblings
Steele R
Widger K