1
40
4
-
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 2016 List
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
Examining The Experiences Of Fathers Of Children With A Life-limiting Illness.
Publisher
An entity responsible for making the resource available
Journal Of Social Work In End-of-life & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Bereavement; Caregivers/caregiving; Children/pediatrics; Health Care; Palliative Care
Creator
An entity primarily responsible for making the resource
Nicholas DB; Beaune L; Barrera M; Blumberg J; Belletrutti M
Description
An account of the resource
Families who have a child diagnosed with a life-limiting illness (LLI) face substantial challenges resulting from the complexity and devastating impact of the condition and potential closeness of death. The experiences of fathers of a child with LLI have been understudied; therefore, this study explored the stresses, experiences, and strategies of these fathers, including their perceptions about support needs. Based on grounded theory, in-depth semi-structured interviews were conducted with 18 fathers of children with LLI. Six fathers had experienced the death of their child. The overarching themes were stresses, means of coping, and perceived needs for support. Generally, fathers in this study struggled relative to discursive and internalized notions of fathers as providers and protectors for their children, combined with an inability to ease their child's vulnerability to LLI. Participants were engaged in the care of their child with LLI, but several felt marginalized by health care providers in care planning and staff/family communication. Some fathers recognized and valued their support network while others had few supports. Some described personal growth and desired to help other fathers. Practice implications and recommendations include renewed application of family-centered care, overcoming presumptions about fathers' roles, and recognizing the impact of LLI beyond physical health.
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Barrera M
Beaune L
Belletrutti M
Bereavement
Blumberg J
Caregivers/caregiving
Children/pediatrics
Health Care
Journal of Social Work in End-of-Life & Palliative Care
May 2016 List
Nicholas DB
Palliative Care
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1945-1474.2008.tb01137.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1945-1474.2008.tb01137.x</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 home for medically complex children: the role of hospital programs
Publisher
An entity responsible for making the resource available
Journal For Healthcare Quality
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Child; Humans; home care services; Health Services Needs and Demand; Continuity of Patient Care; Models; Organizational; Disease Management; Hospitalized; Hospital-Based
Creator
An entity primarily responsible for making the resource
Cohen E; Friedman J; Nicholas DB; Adams S; Rosenbaum P
Description
An account of the resource
The medical home is a conceptual model of continuous and comprehensive care provision that is associated with improved outcomes for children with special healthcare needs. Most applications of the medical home have focused on improving primary care services. Despite concerted efforts to apply the medical home concept to the care of children with special healthcare needs, many barriers to its implementation still exist, in particular, for the subset of children with special healthcare needs who are medically complex. Applying the medical home concept to hospital-based care coordination may benefit both children with complex conditions and their families, as well as the community-based providers.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1945-1474.2008.tb01137.x" target="_blank" rel="noreferrer">10.1111/j.1945-1474.2008.tb01137.x</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
2008
Adams S
Backlog
Child
Cohen E
Continuity Of Patient Care
Disease Management
Friedman J
Health Services Needs And Demand
home care services
Hospital-Based
Hospitalized
Humans
Journal Article
Journal For Healthcare Quality
Models
Nicholas DB
Organizational
Rosenbaum 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://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=medl&AN=24600719" target="_blank" rel="noreferrer">http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=medl&AN=24600719</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 perceptions of siblings' grieving after a childhood cancer death: a longitudinal study.
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
2013
Subject
The topic of the resource
sibling bereavement; T
Creator
An entity primarily responsible for making the resource
Barrera M; Alam R; D'Agostino NM; Nicholas DB; Schneiderman G
Description
An account of the resource
We investigated longitudinally parental perceptions of siblings' bereavement after childhood cancer death. Parents were interviewed 6 months (n = 25) and 18 months (n = 75) post-death. Data are analyzed combined and over time. The following themes emerged: (a) expression of grief missing deceased child (verbally, crying), behavioral problems, difficulty understanding the meaning of death (pre-schoolers), and avoiding talking with parents about feelings (adolescents); (b) what helps siblings grief moving on, talking about deceased child and social support; (c) relationship with parents improved for most siblings; and (d) bond with deceased sibling: pretend-play (preschoolers), dreaming, and career choices (adolescents). Over time, themes reflected stability and change.
2013-01
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
2013
Alam R
Backlog
Barrera M
D'Agostino NM
Death studies
Journal Article
Nicholas DB
Schneiderman G
sibling bereavement
T
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
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/s12904-023-01280-8" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01280-8</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
Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic
Publisher
An entity responsible for making the resource available
BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Canada; terminal care; article; controlled study; female; human; male; chronic disease; social support; palliative therapy; interview; parental attitude; health care policy; health care access; health service; adolescent; infant; physical activity; public health; qualitative research; coping behavior; coronavirus disease 2019; risk assessment; health status; personal experience; bereavement support; health care facility; family support; pandemic; infection control
Creator
An entity primarily responsible for making the resource
Rapoport A; Nicholas DB; Zulla RT
Description
An account of the resource
Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods: In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children's hospital in eastern Canada. Results: Twenty bereaved parents, consisting of 12 mothers and 8 fathers, participated in individual interviews between January and December 2021. Findings identified impacts of the COVID-19 pandemic on children's end-of-life care, experiences in hospital and at home, and family bereavement processes and experiences. Most parents experienced substantial worry about their child's physical status and the additional risk of COVID-19 given her/his vulnerability. Parents also struggled to navigate public health protocols as they attended to their child's needs and their family's desire for engagement and support. Key facilitators that helped families cope included a strong network of formal and informal supports. Conclusion: Implications highlight the need to critically reflect on pandemic care in the context of co-occurring end-of-life processes. Findings amplify the need to balance necessary infection control practices with access to essential supports for families.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-023-01280-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01280-8</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adolescent
Article
Bereavement Support
BMC Palliative Care
Canada
Child
Chronic Disease
Controlled Study
Coping Behavior
coronavirus disease 2019
family support
February List 2024
Female
Health Care Access
health care facility
Health Care Policy
Health Service
Health Status
Human
Infant
Infection Control
Interview
Male
Nicholas DB
Palliative Therapy
Pandemic
Parental Attitude
Personal Experience
physical activity
Public Health
Qualitative Research
Rapoport A
Risk Assessment
Social Support
Terminal Care
Zulla RT