1
40
22
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PedPalASCNet Member Publications
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<a href="https://doi.org/10.1016/j.jpainsymman.2011.10.017" target="_blank" rel="noreferrer">https://doi.org/10.1016/j.jpainsymman.2011.10.017</a>
Notes
<p>1873-6513<br />Gilmer, Mary Jo<br />Foster, Terrah L<br />Vannatta, Kathryn<br />Barrera, Maru<br />Davies, Betty<br />Dietrich, Mary S<br />Fairclough, Diane L<br />Grollman, Jamie<br />Gerhardt, Cynthia A<br />R01 CA098217/CA/NCI NIH HHS/United States<br />R01 CA98217/CA/NCI NIH HHS/United States<br />Journal Article<br />Research Support, N.I.H., Extramural<br />United States<br />J Pain Symptom Manage. 2012 Oct;44(4):572-82. doi: 10.1016/j.jpainsymman.2011.10.017. Epub 2012 Jul 10.</p>
Dublin Core
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Date
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2012
Title
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Changes In Parents After The Death Of A Child From Cancer
Publisher
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Journal Of Pain And Symptom Management
Subject
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Adaptation Psychological; Bereavement; Death; Adult; Canada; Child; Emotions; Family/ Psychology; Female; Humans; Male; Parents/ Psychology; Siblings/psychology; United States
Creator
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Gilmer MJ; Foster TL; Vannatta K; Barrera M; Davies B; Dietrich MS; Fairclough DL; Grollman J; Gerhardt CA
Description
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CONTEXT: Few studies have compared multiple perspectives of changes experienced by parents after a child's death. OBJECTIVES: This study used interviews with bereaved parents and siblings to examine changes in parents during the first year after the death of a child from cancer. METHODS: Mothers (n=36), fathers (n=24), and siblings (n=39) from 40 families were recruited from three hospitals in the U.S. and Canada three to 12 months after the death (M=10.7, SD=3.5). Semistructured interviews with open-ended questions were conducted in the home with each participating parent and sibling separately. Content analysis identified emerging themes, and frequencies were compared between each paired set of reports (mother vs. sibling, father vs. sibling, and mother vs. father). RESULTS: Parents and siblings identified two major categories of change experienced by bereaved parents. These changes occurred in their personal lives (e.g., emotions, perspectives and priorities, physical state, work habits, coping/behaviors, spiritual beliefs, and feeling something is missing) and relationships (e.g., family, others). Ninety-four percent of the mothers, 87% of the fathers, and 69% of the siblings reported parental changes in at least one of these categories. Parents were more likely to report changes in priorities, whereas siblings reported more sadness in parents after the death. CONCLUSION: Positive and negative changes in parents after the death of a child from cancer occur in both personal and relational domains. Additional research is needed to determine the impact of a child's death on bereaved parents over time and to develop strategies to promote healthy adjustment.
Identifier
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<a href="https://doi.org/10.1016/j.jpainsymman.2011.10.017" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2011.10.017</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).
2012
Adaptation Psychological
Adult
Barrera M
Bereavement
Canada
Changes In Parents After The Death Of A Child From Cancer
Child
Davies B
Death
Dietrich MS
Emotions
Fairclough DL
Family/ Psychology
Female
Foster TL
Gerhardt CA
Gilmer MJ
Grollman J
Humans
Journal of Pain and Symptom Management
Male
Parents/ Psychology
Siblings/psychology
United States
Vannatta K
-
Dublin Core
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Title
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PedPalASCNet Member Publications
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Text
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<a href="http://doi.org/10.1097/NCC.0b013e3182365646" target="_blank" rel="noreferrer">http://doi.org/10.1097/NCC.0b013e3182365646</a>
<a href="http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=medl&AN=22067687" target="_blank" rel="noreferrer">http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=medl&AN=22067687</a>
Dublin Core
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Title
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Changes in siblings after the death of a child from cancer.
Publisher
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Cancer Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
adolescent; Child; Cross-Sectional Studies; Female; Humans; Male; bereavement; Death; Neoplasms; Adult; Parents; Middle Aged; Siblings; Qualitative Research; Time Factors; Nursing Methodology Research; Adaptation; Psychological; IM; sibling bereavement; N
Creator
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Foster TL; Gilmer MJ; Vannatta K; Barrera M; Davies B; Dietrich MS; Fairclough DL; Gerhardt CA
Description
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IMPLICATIONS FOR PRACTICE: Our findings offer guidance to improve aftercare for bereaved siblings and their families. Additional research is needed to further delineate the needs of bereaved siblings and to develop strategies to promote adaptation to loss.
Identifier
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<a href="http://doi.org/10.1097/NCC.0b013e3182365646" target="_blank" rel="noreferrer">10.1097/NCC.0b013e3182365646</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).
Type
The nature or genre of the resource
Journal Article
2012
Adaptation
Adolescent
Adult
Backlog
Barrera M
Bereavement
Cancer Nursing
Child
Cross-sectional Studies
Davies B
Death
Dietrich MS
Fairclough DL
Female
Foster TL
Gerhardt CA
Gilmer MJ
Humans
IM
Journal Article
Male
Middle Aged
N
Neoplasms
Nursing Methodology Research
Parents
Psychological
Qualitative Research
sibling bereavement
Siblings
Time Factors
Vannatta K
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
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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/10.1093/jpepsy/jsr082" target="_blank" rel="noreferrer">http://doi.org/10.1093/jpepsy/jsr082</a>
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Title
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Peer relationships of bereaved siblings and comparison classmates after a child's death from cancer
Publisher
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Journal Of Pediatric Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
adolescent; Child; Female; Humans; Male; bereavement; Neoplasms; Interpersonal Relations; Siblings; Peer Group; social support; Age Factors; Sex Factors; Schools; Social Behavior; sibling bereavement
Creator
An entity primarily responsible for making the resource
Gerhardt CA; Fairclough DL; Grossenbacher JC; Barrera M; Gilmer MJ; Foster TL; Compas BE; Davies B; Hogan NS; Vannatta K
Description
An account of the resource
OBJECTIVES: To compare peer relationships among bereaved siblings and matched classmates, and to examine gender, grade level, and time since death as moderators. METHODS: Families were recruited from cancer registries at four hospitals 3-12 months after a child's death. Measures of social behavior and peer acceptance were completed by children in the classrooms of 105 bereaved siblings (ages 8-17 years). Teachers also reported on children's social behavior. Three classmates were matched for gender, race, and age to each bereaved sibling to form a comparison group (n = 311). RESULTS: Teachers reported bereaved siblings were more prosocial than comparison classmates. Peers perceived bereaved boys as more sensitive-isolated and victimized, while bereaved siblings in elementary grades were perceived by peers as less prosocial, more sensitive-isolated, less accepted, and as having fewer friends. Peers and teachers viewed bereaved siblings in middle/high school grades as higher on leadership-popularity. CONCLUSIONS: Bereaved siblings who were male and in elementary grades were more vulnerable to social difficulties, while those in middle/high school may exhibit some strengths. Ongoing research to inform the development of interventions for bereaved siblings is warranted.
Identifier
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<a href="http://doi.org/10.1093/jpepsy/jsr082" target="_blank" rel="noreferrer">10.1093/jpepsy/jsr082</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).
Type
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Journal Article
2012
Adolescent
Age Factors
Backlog
Barrera M
Bereavement
Child
Compas BE
Davies B
Fairclough DL
Female
Foster TL
Gerhardt CA
Gilmer MJ
Grossenbacher JC
Hogan NS
Humans
Interpersonal Relations
Journal Article
Journal of Pediatric Psychology
Male
Neoplasms
Peer Group
Schools
Sex Factors
sibling bereavement
Siblings
Social Behavior
Social Support
Vannatta K
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
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A collection of relevant articles published by one or more of PedPalASCNet's members
Text
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1080/15524256.2011.593153" target="_blank" rel="noreferrer">http://doi.org/10.1080/15524256.2011.593153</a>
<a href="http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=medl&AN=21895435" target="_blank" rel="noreferrer">http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=medl&AN=21895435</a>
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A qualitative study of advice from bereaved parents and siblings.
Publisher
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Journal Of Social Work In End-of-life & Palliative Care
Date
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2011
Subject
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IM; sibling bereavement
Creator
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Thompson AL; Miller KS; Barrera M; Davies B; Foster TL; Gilmer MJ; Hogan N; Vannatta K; Gerhardt CA
Description
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Despite a growing bereavement literature, relatively little is known about what families find helpful after a child's death and how best to assist them during the grieving process. In this qualitative study, the authors explored advice from 40 families (65 parents, 39 siblings) of children who died from cancer 6-19 months earlier. Content analysis emphasized the individual nature of grief and revealed advice that fit into three temporal categories: before the death, soon after, and long-term. Findings are discussed in the context of contemporary theory and provide insight into the development and timing of grief interventions.
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<a href="http://doi.org/10.1080/15524256.2011.593153" target="_blank" rel="noreferrer">10.1080/15524256.2011.593153</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).
Type
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Journal Article
2011
Backlog
Barrera M
Davies B
Foster TL
Gerhardt CA
Gilmer MJ
Hogan N
IM
Journal Article
Journal of Social Work in End-of-Life & Palliative Care
Miller KS
sibling bereavement
Thompson AL
Vannatta K
-
Text
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URL Address
<a href="http://doi.org/10.1002/pbc.21034" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.21034</a>
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Title
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Evaluation of a pediatric palliative care educational workshop for oncology fellows
Publisher
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Pediatric Blood & Cancer
Date
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2006
Creator
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Baughcum AE; Gerhardt CA; Young-Saleme T; Stefanik R; Klopfenstein KJ
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<a href="http://doi.org/10.1002/pbc.21034" target="_blank" rel="noreferrer">10.1002/pbc.21034</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).
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Journal Article
Description
An account of the resource
2006
2006
Backlog
Baughcum AE
Gerhardt CA
Journal Article
Klopfenstein KJ
Pediatric Blood & Cancer
Stefanik R
Young-Saleme T
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
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A collection of relevant articles published by one or more of PedPalASCNet's members
Text
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URL Address
<a href="http://doi.org/10.1177/1043454209340322" target="_blank" rel="noreferrer">http://doi.org/10.1177/1043454209340322</a>
<a href="http://jpo.sagepub.com.ezproxy.library.ubc.ca/content/26/6/369" target="_blank" rel="noreferrer">http://jpo.sagepub.com.ezproxy.library.ubc.ca/content/26/6/369</a>
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Title
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Bereaved Parents’ and Siblings’ Reports of Legacies Created by Children With Cancer
Publisher
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Journal Of Pediatric Oncology Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
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Child; Female; Humans; Male; Adult; Parents; Family Relations; Siblings; Qualitative Research; Time Factors; childhood cancer; adolescent; Adaptation; Psychological; bereavement; Psychological; Stress; bereaved parent; Neoplasms/psychology; sibling bereavement; bereaved sibling; legacy; pediatric death
Creator
An entity primarily responsible for making the resource
Foster TL; Gilmer MJ; Davies B; Barrera M; Fairclough D; Vannatta K; Gerhardt CA
Description
An account of the resource
This qualitative study explored bereaved parents’ and siblings’ reports of legacies created by children with advanced cancer. Participants included 40 families of children who died from cancer, with 36 mothers, 27 fathers, and 40 siblings (ages 8-18 years). Individual interviews were completed at home approximately 10.68 months (SD = 3.48) after the child’s death. Content analysis of interviews indicated that many children living with cancer did specific things to be remembered, such as making crafts for others, willing away belongings, writing letters to loved ones, and giving special gifts. Some children, particularly those who were very ill or died unexpectedly, did not intentionally do or say anything to be remembered. Legacies included bereaved individuals remembering children’s qualities, concern for family, and beliefs about afterlife. Having advanced cancer appeared to motivate children to influence others’ lives and prepare for their own deaths. Children’s advice about how to live life inspired bereaved family members. Findings contribute to the current knowledge of legacy-making in children and offer implications for practice and future research.
2009-11
Identifier
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<a href="http://doi.org/10.1177/1043454209340322" target="_blank" rel="noreferrer">10.1177/1043454209340322</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).
Type
The nature or genre of the resource
Journal Article
2009
Adaptation
Adolescent
Adult
Backlog
Barrera M
Bereaved Parent
bereaved sibling
Bereavement
Child
Childhood Cancer
Davies B
Fairclough D
Family Relations
Female
Foster TL
Gerhardt CA
Gilmer MJ
Humans
Journal Article
Journal Of Pediatric Oncology Nursing
legacy
Male
Neoplasms/psychology
Parents
Pediatric Death
Psychological
Qualitative Research
sibling bereavement
Siblings
Stress
Time Factors
Vannatta K
-
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/10.1002/pbc.24556" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.24556</a>
<a href="http://onlinelibrary.wiley.com/doi/10.1002/pbc.24556/abstract" target="_blank" rel="noreferrer">http://onlinelibrary.wiley.com/doi/10.1002/pbc.24556/abstract</a>
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Title
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Child-rearing in the context of childhood cancer: Perspectives of parents and professionals
Publisher
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Pediatric Blood & Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
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psychosocial; Pediatric; cancer; parenting; childhood; Child Rearing
Creator
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Long KA; Keeley L; Reiter-Purtill J; Vannatta K; Gerhardt CA; Noll RB
Description
An account of the resource
Background Elevated distress has been well documented among parents of children with cancer. Family systems theories suggest that cancer-related stressors and parental distress have the potential to affect child-rearing practices, but this topic has received limited empirical attention. The present work examined self-reported child-rearing practices among mothers and fathers of children with cancer and matched comparisons. Procedure Medical and psychosocial professionals with expertise in pediatric oncology selected items from the Child-Rearing Practices Report (CRPR) likely to differentiate parents of children with cancer from matched comparison parents. Then, responses on these targeted items were compared between parents of children with cancer (94 mothers, 67 fathers) and matched comparisons (98 mothers, 75 fathers). Effect sizes of between-group differences were compared for mothers versus fathers. Results Pediatric oncology healthcare providers predicted that 14 items would differentiate child-rearing practices of parents of children with cancer from parents of typically developing children. Differences emerged on six of the 14 CRPR items. Parents of children with cancer reported higher levels of spoiling and concern about their child's health and development than comparison parents. Items assessing overprotection and emotional responsiveness did not distinguish the two groups of parents. The effect size for the group difference between mothers in the cancer versus comparison groups was significantly greater than that for fathers on one item related to worry about the child's health. Conclusion Parents of children with cancer report differences in some, but not all, domains of child-rearing, as predicted by healthcare professionals. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013
Identifier
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<a href="http://doi.org/10.1002/pbc.24556" target="_blank" rel="noreferrer">10.1002/pbc.24556</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).
Type
The nature or genre of the resource
Journal Article
2013
Backlog
Cancer
Child Rearing
childhood
Gerhardt CA
Journal Article
Keeley L
Long KA
Noll RB
Parenting
Pediatric
Pediatric Blood & Cancer
psychosocial
Reiter-Purtill J
Vannatta K
-
Dublin Core
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Title
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September 2018 List
Text
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Citation List Month
October 2018 List
URL Address
<a href="http://doi.org/10.1037/spq0000253" target="_blank" rel="noreferrer noopener">http://doi.org/10.1037/spq0000253</a>
Dublin Core
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Title
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Grief and growth in bereaved siblings: Interactions between different sources of social support
Publisher
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School Psychology Quarterly
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Bereavement; Grief; Interpersonal Interaction; Siblings; Social Support
Creator
An entity primarily responsible for making the resource
Howard SKM; Russell C; Keim M; Barrera Maru; Gilmer Mary Jo; Foster AT; Compas BE; Fairclough DL; Davies B; Hogan Nancy; Young-Saleme T; Vannatta K; Gerhardt CA
Description
An account of the resource
The objective was to characterize the relation between different sources of school-based social support (friends, peers, and teachers) and bereaved siblings’ grief and grief-related growth and to examine whether nonparental sources of social support buffer the effects of low parent support on bereaved siblings. Families (N = 85) were recruited from cancer registries at 3 pediatric institutions 3–12 months after a child’s death. Bereaved siblings were 8–18 years old (M = 12.39, SD = 2.65) and majority female (58%) and White (74%). During home visits, siblings reported their perceptions of social support from parental and nonparental sources using the Social Support Scale for Children, as well as grief and grief-related growth using the Hogan Sibling Inventory of Bereavement. Parent, friend, and teacher support were positively correlated with grief-related growth, whereas parent and peer support were negatively correlated with grief for adolescents. Teacher and friend support significantly moderated the association between parent support and grief such that teacher and friend support accentuated the positive effects of parent support. Friend and peer support moderated associations between parent support and grief/growth for adolescents but not children. School-based social support, namely from friends, peers, and teachers, appears to facilitate the adjustment of bereaved siblings. Findings suggest that bereaved siblings may benefit from enhanced support from teachers and friends regardless of age, with middle/high school students particularly benefitting from increased support from close friends and peers. (PsycINFO Database Record (c) 2018 APA, all rights reserved) Impact and Implications—This study suggests that school-based social support may enhance the positive effect of parental support for bereaved siblings and, in the case of peer support, compensate for low parental support. Thus, bereaved siblings may benefit from social support from teachers and close friends across ages, with adolescents in middle/high school particularly benefitting from social support from peers and close friends. (PsycINFO Database Record (c) 2018 APA, all rights reserved)
Identifier
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<a href="http://doi.org/10.1037/spq0000253" target="_blank" rel="noreferrer noopener">10.1037/spq0000253</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.
2018
Barrera Maru
Bereavement
Compas BE
Davies B
Fairclough DL
Foster AT
Gerhardt CA
Gilmer Mary Jo
Grief
Hogan Nancy
Howard SKM
Interpersonal Interaction
Keim M
October 2018 List
Russell C
School Psychology Quarterly
September 2018 List
Siblings
Social Support
Vannatta K
Young-Saleme T
-
Dublin Core
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Title
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May 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
May 2021 List
URL Address
<a href="http://doi.org/10.1097/NNR.0000000000000419" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/NNR.0000000000000419</a>
Dublin Core
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Title
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Perceived Infant Well-Being and Self-Reported Distress in Neonatal Nurses
Publisher
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Nursing Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
distress; infant; infant welfare; longitudinal study; neonatal intensive care units; neonatal nurses; quality of life
Creator
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Fortney CA; Pratt M; Dunnells ZDO; Rausch JR; Clark OE; Baughcum AE; Gerhardt CA
Description
An account of the resource
BACKGROUND: Infants who are admitted to a neonatal intensive care unit (NICU) may experience significant symptom burden. Parents are often distressed by these symptoms, which can affect their long-term coping and distress. There is limited research examining nurse perceptions of infant well-being (symptoms, suffering, and quality of life [QOL]) and associations with nurse distress. OBJECTIVE(S): The objective of this descriptive study was to explore associations between nurse perceptions of infant well-being and self-reported distress. METHOD(S): Nurses caring for infants with potentially life-threatening/life-limiting conditions were recruited from a Level IV NICU in the Midwestern United States as a part of a study on infant symptom burden. Nurses reported their perceptions of infant well-being and their own distress on a 5-point Likert scale. Surveys were administered at the bedside weekly for up to 12 weeks, depending on length of stay. Infant suffering and QOL were examined in relation to nurse distress. A cross-classified multilevel model was used to account for dependence within nurse and within patient. RESULT(S): A total of 593 surveys were collected from nurses. Using a cross-classified multilevel model with variables entered simultaneously, nurse perceptions of greater infant suffering and lower infant QOL were significantly associated with greater nurse distress. DISCUSSION: Preliminary evidence shows that greater perceived infant suffering and lower perceived infant QOL may be associated with greater levels of self-reported distress in NICU nurses. Further work is needed to better understand factors related to symptom management in the NICU and the potential role of caregiver distress and compassion fatigue in NICU nurses.
Identifier
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<a href="http://doi.org/10.1097/NNR.0000000000000419" target="_blank" rel="noreferrer noopener">10.1097/NNR.0000000000000419</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
Baughcum AE
Clark OE
Distress
Dunnells ZDO
Fortney CA
Gerhardt CA
Infant
Infant Welfare
longitudinal study
May 2021 List
Neonatal Intensive Care Units
Neonatal Nurses
Nursing Research
Pratt M
Quality Of Life
Rausch JR
-
Dublin Core
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Title
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August 2021 List
Text
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August 2021 List
URL Address
<a href="http://doi.org/10.1007/s10880-021-09797-x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s10880-021-09797-x</a>
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Title
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Impact of End-of-Life Circumstances on the Adjustment of Bereaved Siblings of Children Who Died from Cancer
Publisher
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Journal of Clinical Psychology in Medical Settings
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Children; Adjustment; End of life; Cancer; Sibling bereavement
Creator
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Kenney AE; Tutelman PR; Fisher RS; Lipak KG; Barrera M; Gilmer MJ; Fairclough D; Akard TF; Compas BE; Davies B; Hogan NS; Vannatta K; Gerhardt CA
Description
An account of the resource
The aim of this study was to examine the impact of end-of-life (EoL) circumstances on grief and internalizing symptoms among bereaved siblings. Bereaved families (N = 88) were recruited from three sites 3-12 months (M = 11.57, SD = 3.48) after their child's death from cancer. One sibling per family aged 8-17 years (M = 12.41, SD = 2.64) was randomly selected to participate. Families completed measures of siblings' grief and internalizing symptoms, as well as a structured interview about circumstances surrounding the death. Mother and sibling reports of EoL circumstances were generally concordant, except there was a discrepancy between mothers and children about whether or not children expected their sibling's death (t(75) = 1.52, p = .018). Mother reports of sibling internalizing symptoms were above the normative mean (t(83) = 4.44, p ≤ .001 (M = 56.01 ± 12.48), with 39% (n = 33) in the borderline/clinical range. Sibling opportunity to say goodbye was associated with greater grief-related growth (t(79) = - 1.95, p = .05). Presence at the death and wishing they had done something differently were both associated with greater grief (t(80) = - 2.08, p = .04 and t(80) = - 2.24, p = .028, respectively) and grief-related growth (t(80) = - 2.01, p = .048 and t(80) = - 2.31, p = .024, respectively). However, findings were primarily unique to sibling report, with few mother-reported effects. The adjustment of bereaved siblings may be affected by certain modifiable circumstances surrounding the death of their brother or sister. A proportion of bereaved siblings had elevated internalizing symptoms irrespective of circumstances at EoL. Further work is needed to understand predictors of adjustment among bereaved siblings to provide better support and optimize their outcomes.
Identifier
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<a href="http://doi.org/10.1007/s10880-021-09797-x" target="_blank" rel="noreferrer noopener">10.1007/s10880-021-09797-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).
2021
Adjustment
Akard TF
August 2021 List
Barrera M
Cancer
Children
Compas BE
Davies B
End Of Life
Fairclough D
Fisher RS
Gerhardt CA
Gilmer MJ
Hogan NS
Journal Of Clinical Psychology In Medical Settings
Kenney AE
Lipak KG
sibling bereavement
Tutelman PR
Vannatta K
-
Dublin Core
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Title
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November 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
November 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.02.015" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.02.015</a>
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Title
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Parent Perceptions of Infant Symptoms and Suffering and Associations With Distress Among Bereaved Parents in the NICU
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
2021
Subject
The topic of the resource
grief; palliative care; end of life; NICU; parents; bereavement
Creator
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Clark OE; Fortney CA; Dunnells ZDO; Gerhardt CA; Baughcum AE
Description
An account of the resource
CONTEXT: Healthcare providers and parents face many challenges caring for infants at the end of life (EOL). Symptom assessment and management in critically ill infants can be especially difficult. However, the impact of the infant's EOL experience on bereaved parents is largely unknown. OBJECTIVE: Explore associations between parental perceptions of infant symptoms and suffering at EOL in the neonatal intensive care unit (NICU) and parent adjustment following the death. METHODS: Retrospective, cross-sectional pilot study involving parents of infants who died within the previous five years in a large, Midwestern, level IV NICU. Parents were recruited through mailed invitations, and 40 mothers and 27 fathers participated from 40 families. Parents retrospectively reported on infant symptom burden and suffering during the last week of life and the Impact of Events Scale-Revised (IES-R), and Prolonged Grief-13 (PG-13). Hierarchical regressions examined demographic/medical factors and parent perceptions at EOL in relation to post-traumatic stress symptoms (PTSS) and prolonged grief (PG). RESULTS: Clinical levels of PTSS (Mothers = 18%; Fathers = 11%) and PG (Mothers and Fathers = 3%) were low. Maternal perception of higher symptom burden was associated with greater PTSS, R2 = 0.46, P= 0.001, and PG, R2 = 0.47, P < 0.01. Paternal perception of greater infant suffering was associated with greater PTSS, R2 = 0.48, P= 0.001, and PG, R2 = .38, P < 0.01. CONCLUSION: Perceptions of symptoms and suffering were associated differently with mother and father adjustment after bereavement. While not necessarily causal, better symptom management at EOL could minimize distress for both infants and their parents.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.02.015" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.02.015</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).
2021
Baughcum AE
Bereavement
Clark OE
Dunnells ZDO
End Of Life
Fortney CA
Gerhardt CA
Grief
Journal of Pain and Symptom Management
Nicu
November 2021 List
Palliative Care
Parents
-
Dublin Core
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Title
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Special Edition #1 2022 List
Text
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Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1097/ANC.0000000000000677" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/ANC.0000000000000677</a>
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Title
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Healthcare Satisfaction and Unmet Needs Among Bereaved Parents in the NICU
Publisher
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Advances in Neonatal Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Neonatal intensive care; Newborn Infant; Bereavement; Delivery of Health Care; Infant; Needs Assessment; Palliative Care; Parents; Personal Satisfaction; Prospective Studies; Terminal Care
Creator
An entity primarily responsible for making the resource
Baughcum AE; Fortney CA; Winning AM; Dunnells ZDO; Humphrey LM; Gerhardt CA
Description
An account of the resource
BACKGROUND: Learning directly from bereaved parents about their experiences in the neonatal intensive care unit (NICU) can improve services at end-of-life (EOL) care. Parents who perceive that their infant suffered may report less satisfaction with care and may be at greater risk for distress after the death. Despite calls to improve EOL care for children, limited research has examined the EOL experiences of families in the NICU. PURPOSE: We examined parent perceptions of their infant's EOL experience (eg, symptom burden and suffering) and satisfaction with care in the NICU. METHODS/SEARCH STRATEGY: Forty-two mothers and 27 fathers (representing 42 infants) participated in a mixed-methods study between 3 months and 5 years after their infant's death (mean = 39.45 months, SD = 17.19). Parents reported on healthcare satisfaction, unmet needs, and infant symptoms and suffering in the final week of life. FINDINGS/RESULTS: Parents reported high levels of healthcare satisfaction, with relative strengths in providers' technical skills and inclusion of the family. Greater perceived infant suffering was associated with lower healthcare satisfaction and fewer well-met needs at EOL. Parents' understanding of their infant's condition, emotional support, communication, symptom management, and bereavement care were identified as areas for improvement. IMPLICATIONS FOR PRACTICE: Parents value comprehensive, family-centered care in the NICU. Additionally, monitoring and alleviating infant symptoms contribute to greater parental satisfaction with care. Improving staff knowledge about EOL care and developing structured bereavement follow-up programs may enhance healthcare satisfaction and family outcomes. IMPLICATIONS FOR RESEARCH: Prospective studies are needed to better understand parental perceptions of EOL care and the influence on later parental adjustment.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/ANC.0000000000000677" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000677</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
2022 Special Edition 1 - Parent Perspectives
Advances in Neonatal Care
Baughcum AE
Bereavement
Delivery of Health Care
Dunnells ZDO
Fortney CA
Gerhardt CA
Humphrey LM
Infant
Needs Assessment
neonatal intensive care
Newborn Infant
Palliative Care
Parents
Personal Satisfaction
Prospective Studies
Terminal Care
Winning AM
-
Dublin Core
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Title
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Special Edition #1 2022 List
Text
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Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.007" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.007</a>
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Title
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Bereaved Parents' Perceptions of Infant Suffering in the NICU
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
2019
Subject
The topic of the resource
Neonatal Intensive Care Units; Newborn Infant; Infant; intensive care; Mothers; Neonatal; NICU; Parents; Perception; suffering
Creator
An entity primarily responsible for making the resource
Fortney CA; Baughcum AE; Moscato EL; Winning AM; Keim MC; Gerhardt CA
Description
An account of the resource
CONTEXT: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe their infant is suffering may alter treatment goals based on their perceptions; however, it is unknown how parents come to believe that their infant may be suffering. OBJECTIVES: To examine bereaved parents' perceptions of infant suffering in the NICU. METHODS: Parents completed a qualitative interview exploring their perceptions of the level of suffering that their infant experienced at the end of life. Parents whose infant died in a large Midwestern Level IV regional referral NICU from July 2009 to July 2014 were invited to participate. Thirty mothers and 16 fathers from 31 families (31 of 249) participated in telephone interviews between three months and five years after their infant's death. RESULTS: Four themes emerged from the qualitative analysis: 1) the presence/absence of suffering, 2) indicators of suffering, 3) temporal components of suffering (trajectory), and 4) influence of perceived suffering on parents, infants, and clinical decision making. CONCLUSION: Parents used signs exhibited by infants, as well as information they received from the health care team to form their perceptions of suffering. Perceived suffering followed different trajectories and influenced the decisions that parents made for their infant. Soliciting parent perspectives may lead to improvements in the understanding of infant well-being, particularly suffering, as well as how parents rely on these perceptions to make treatment decisions for their infant.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.007</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
2022 Special Edition 1 - Parent Perspectives
Baughcum AE
Fortney CA
Gerhardt CA
Infant
Intensive Care
Journal of Pain and Symptom Management
Keim MC
Moscato EL
Mothers
Neonatal
Neonatal Intensive Care Units
Newborn Infant
Nicu
Parents
Perception
Suffering
Winning AM
-
Dublin Core
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Title
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Special Edition #2 2022 List
Text
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Special Edition #2
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.09.007" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.09.007</a>
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Title
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Concerns of Parents with Children Receiving Home-Based Pediatric Palliative Care
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
hospice; palliative care; parents; pediatrics; quality of life; symptom management
Creator
An entity primarily responsible for making the resource
Tutelman PR; Lipak KG; Adewumi A; Fults MZ; Humphrey LM; Gerhardt CA
Description
An account of the resource
CONTEXT: Caring for a child who will die from a life-limiting illness is one of the most difficult experiences a parent may face. Pediatric palliative care (PPC) has grown as a specialty service to address the unique needs of children and families with serious illness. However, gaps remain between the needs of families in PPC and the support received. OBJECTIVE(S): The objective of this study was to explore the concerns of parents who have a child in home-based PPC. METHOD(S): Semi-structured interviews were conducted with 25 mothers and 10 fathers from 25 families shortly after their child's referral to home-based PPC. Children (57% male, Mage = 10.5 years, SD = 3.95, range = 4-18 years) had a range of diagnoses. Data were analyzed using inductive content analysis. RESULT(S): Parents' concerns clustered into four main themes: (1) ensuring that their child's remaining days were spent living well physically, emotionally, and socially; (2) uncertainty regarding their child's diagnosis, prognosis, and treatments; (3) their child's death (e.g., the process of dying and when it will occur); and (4) the family, including the impact of the child's illness and death on siblings and wanting to cherish as much time together with family as possible. CONCLUSION(S): Parents of children receiving home-based PPC expressed concerns across a range of domains, both about their seriously ill child and the broader family. These results highlight salient worries among parents of children in PPC, and point to critical areas for intervention for seriously ill children and the broader family. Copyright © 2020. Published by Elsevier Inc.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.09.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.09.007</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
2022 Special Edition 2 - Parent Perspectives
Adewumi A
Fults MZ
Gerhardt CA
Hospice
Humphrey LM
Journal of Pain and Symptom Management
Lipak KG
Palliative Care
Parents
Pediatrics
Quality Of Life
Symptom Management
Tutelman PR
-
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Title
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October 2022 List
Text
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Citation List Month
October 2022 List
URL Address
<a href="http://doi.org/10.21037/apm-21-3225">http://doi.org/10.21037/apm-21-3225</a>
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Title
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Grief in Critical Care Nurses after Pediatric Suffering and Death
Publisher
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Annals of Palliative 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
Adaptation; Pediatric Terminal Care; Psychological; Child; Critical Care; Female; Grief; Humans; Intensive Care Units
Creator
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Groves KA; Adewumi A; Gerhardt CA; Skeens MA; Suttle ML
Description
An account of the resource
BACKGROUND: Working in the pediatric intensive care unit (PICU) exposes nurses to intense and recurrent experiences with loss. Such experiences may result in unresolved grief or despair among these providers. Although previous studies have explored grief within the nursing profession, few have focused on grief following the death of children in the PICU, where sudden or traumatic deaths are more frequent. The aim of this study was to characterize the degree to which pediatric critical care (PCC) nurses experience symptoms of grief or distress following the suffering and/or death of a patient in the PICU. METHODS: An email invited PICU nurses at a large free standing children's hospital to complete an online survey with demographic questions and an open-ended, qualitative question about grief experiences. Research team members coded open-ended responses, using thematic content analysis. Final themes were further validated via member checking. RESULTS: Of the 104 participants, most were Caucasian (96.3%), female (97%), bedside (83.5%) nurses with a bachelor's degree (85.4%). Participants had variable years of experience and included both day (59.6%) and night (40.4%) shift nurses. After detailed analysis, the research team identified four major themes among pediatric critical care (PCC) nurses when asked about grief symptoms and distress following the suffering or death of a patient in the PICU: (I) continuum of emotional responses; (II) emotional prompts; (III) coping, and (IV) resilience. CONCLUSIONS: Many PICU nurses were profoundly affected by the death of their patients, while others offered strategies that fostered resilience. Understanding the impact of repeated loss on these specialized nurses may inform the development of more effective grief and bereavement support programs for healthcare providers.
Identifier
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<a href="http://doi.org/10.21037/apm-21-3225">10.21037/apm-21-3225</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
Adaptation
Adewumi A
Annals Of Palliative Medicine
Child
Critical Care
Female
Gerhardt CA
Grief
Groves KA
Humans
Intensive Care Units
October 2022 List
Pediatric Terminal Care
Psychological
Skeens MA
Suttle ML
-
Dublin Core
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Title
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2022 Special Edition 3 - Oncology List
Text
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Citation List Month
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1177/10499091221100809" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/10499091221100809</a>
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Title
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Effects of a Web-Based Pediatric Oncology Legacy Intervention on the Coping of Children With Cancer
Publisher
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American Journal of Hospice and Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Creator
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Cho E; Dietrich MS; Friedman DL; Gilmer MJ; Gerhardt CA; Given BA; Hendricks-Ferguson VL; Hinds PS; Akard TF
Description
An account of the resource
BACKGROUND: Recurrent or refractory cancer often results in substantial and extensive physical, emotional, psychosocial, and spiritual burdens for children and their families. However, the therapeutic benefits of legacy interventions in children with recurrent or refractory cancer have been examined only recently, with limited attention to specific effects on children's coping abilities. OBJECTIVE: The purpose of this study was to determine the effects of a digital storytelling-legacy intervention on the adaptive coping of children with recurrent or refractory cancer. METHODS: This study used a 2-arm randomized, waitlist-controlled trial design. A total of 150 children with recurrent or refractory cancer and their parents were recruited via Facebook advertisements. RESULTS: The analysis sample included 92 dyads (35-intervention group, 57-control group). The legacy intervention showed small and statistically nonsignificant effects on primary-control and disengagement coping strategies among children with recurrent or refractory cancer. CONCLUSIONS: Legacy interventions using readily accessible digital storytelling have the potential to enhance the adaptive coping skills among children with recurrent or refractory cancer. Further research should determine how to enhance interventions tailored to this population to optimize the benefits.
Identifier
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<a href="http://doi.org/10.1177/10499091221100809" target="_blank" rel="noreferrer noopener">10.1177/10499091221100809</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
2022 Special Edition 3 - Oncology List
Akard TF
American Journal of Hospice and Palliative Medicine
children with cancer
Cho E
Coping
Dietrich MS
digital storytelling
Friedman DL
Gerhardt CA
Gilmer MJ
Given BA
Hendricks-Ferguson VL
Hinds PS
Intervention
legacy
Nursing
Palliative Care
Pediatric
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.28826" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.28826</a>
Dublin Core
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Title
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Longitudinal Understanding of Prognosis among Adolescents with Cancer
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
2021
Subject
The topic of the resource
Child; Adolescent; Female; Follow-Up Studies; Humans; Male; Parents/psychology; Prognosis; Longitudinal Studies; oncology; Surveys and Questionnaires; Communication; palliative care; psycho-oncology; psychosocial; Neoplasms/pathology/psychology/therapy; Oncologists/psychology
Creator
An entity primarily responsible for making the resource
Fisher RS; Kenney AE; Fults MZ; Manring S; Rodriguez EM; Desjardins L; Rausch JR; Young-Saleme T; Ranalli MA; Vannatta K; Compas BE; Gerhardt CA
Description
An account of the resource
OBJECTIVE: Despite calls to increase prognosis communication for adolescents with cancer, limited research has examined their perceptions of prognosis as compared with their parents. We assessed adolescents' understanding of their prognosis relative to parents and oncologists. METHODS: Families of adolescents (aged 10-17) were recruited at two pediatric institutions following a new diagnosis or relapse. Seventy-four adolescents, 68 mothers, and 40 fathers participated at enrollment; 76 adolescents, 69 mothers, and 35 fathers participated one year later. The adolescent's primary oncologist reported on prognosis only at enrollment. Participants rated the likelihood of the adolescent's survival in five years, as well as reporting prognosis communication and sources of information. RESULTS: Most oncologists (65%) and fathers (63%) discussed prognosis in numerical terms with the adolescent at baseline, which was greater than mother report (49%) of discussions of numerical prognosis with adolescents. Adolescents reported a better prognosis than oncologists, but comparable with mothers at diagnosis and one year. Adolescents' prognosis estimates were stable over time (P > .05). At diagnosis, adolescent-father (P = 0.025) and adolescent-oncologist (P < 0.001) discrepancies were larger for youth with advanced than non-advanced cancer. Adolescents whose parents received numerical prognosis estimates from the oncologist, and whose fathers reported providing numerical prognosis estimates had more accurate understandings of prognosis (P < 0.05). CONCLUSIONS: Adolescent prognosis estimates were comparable with those of parents at diagnosis and one year but more favorable than that of oncologists. Although additional research is needed, results suggest discrepancies in prognosis estimates between family members and oncologists, particularly for adolescents with advanced cancer.
Identifier
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<a href="http://doi.org/10.1002/pbc.28826" target="_blank" rel="noreferrer noopener">10.1002/pbc.28826</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).
2021
2021 Special Edition - Oncology
Adolescent
Child
Communication
Compas BE
Desjardins L
Female
Fisher RS
Follow-up Studies
Fults MZ
Gerhardt CA
Humans
Kenney AE
Longitudinal Studies
Male
Manring S
Neoplasms/pathology/psychology/therapy
Oncologists/psychology
Oncology
Palliative Care
Parents/psychology
Pediatric Blood & Cancer
Prognosis
Psycho-Oncology
psychosocial
Ranalli MA
Rausch JR
Rodriguez EM
Surveys And Questionnaires
Vannatta K
Young-Saleme T
-
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1017/s1478951521000067" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/s1478951521000067</a>
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Title
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End of Life Communication among Caregivers of Children with Cancer: A Qualitative Approach to Understanding Support Desired By Families
Publisher
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Palliative and Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Communication; Caregiver; End of life; Pediatric; Oncology
Creator
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Kenney AE; Bedoya SZ; Gerhardt CA; Young-Saleme T; Wiener L
Description
An account of the resource
OBJECTIVES: Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support among bereaved caregivers of children with cancer. METHODS: Bereaved caregivers were recruited through a closed social media group to complete an online survey providing retrospective reports of end of life communication with their child and preferences for communication support from health-care providers. The sample of 131 participants was mostly female (77.9%; n = 102) with an average age of 49.15 (SD = 8.03) years. Deceased children were of an average age of 12.42 years (SD = 6.01) and nearly 90% of children died within 5 years of diagnosis. RESULTS: Most caregivers spoke with their child about their prognosis (61.8%; n = 131) and death (66.7%; n = 99). Half of children (48%; n = 125) asked about death, particularly older children (51.9% ≥12 years; p = 0.03). Asking about dying was related to having conversations about prognosis (p ≤ 0.001) and death (p ≤ 0.001). Most caregivers (71.8%; n = 94) wanted support to talk to their children. Fewer wanted providers to speak to children directly (12.2%; n = 16) or to be present while caregivers spoke to the child (19.8%; n = 26). Several themes emerged from a content analysis of open-ended responses regarding preferences for provider support. SIGNIFICANCE OF RESULTS: Most caregivers discussed issues pertaining to end of life irrespective of demographic or medical factors. Qualitative themes provide insight into support desired by families to help with these difficult conversations.
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<a href="http://doi.org/10.1017/s1478951521000067" target="_blank" rel="noreferrer noopener">10.1017/s1478951521000067</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).
2021
2021 Special Edition - Oncology
Bedoya SZ
Caregiver
Communication
End Of Life
Gerhardt CA
Kenney AE
Oncology
Palliative & Supportive Care
Pediatric
Wiener L
Young-Saleme T
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/pon.5601" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pon.5601</a>
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Title
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A Quest for Meaning: A Qualitative Exploration among Children with Advanced Cancer and Their Parents
Publisher
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Psycho-Oncology
Date
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2021
Subject
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Oncology
Creator
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Schaefer MR; Kenney AE; Himelhoch AC; Howard Sharp KM; Humphrey L; Olshefski R; Young-Saleme T; Gerhardt CA
Description
An account of the resource
OBJECTIVE: Meaning-making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning-making among pediatric populations with advanced illness to understand how this process unfolds before the child's death. This study explores meaning-making pre-bereavement among children with advanced cancer and their parents. METHODS: As part of a larger study examining shared decision-making near the end of life, 24 children with advanced cancer and/or high-risk cancer, 26 mothers, and 11 fathers participated in individual, semi-structured interviews. Analyses focused on questions regarding meaning-making. Four coders analyzed the data via directed content analysis. RESULTS: Three major meaning-making themes emerged: (1) sense-making (i.e., unknown, no sense/meaning, religious/spiritual explanations, scientific explanations), (2) benefit-finding, and (3) purpose/legacy. Some stated they were unable to make sense of the diagnosis, because there was no reason, they were not there yet, or they were dealing with the situation and moving forward. Others reported finding meaning through spiritual and scientific explanations. Many identified benefits related to the child's illness, such as personal growth and stronger relationships. Some parents expressed their purpose in life was to live for their children, while others shared their child's legacy as a way to find meaning. CONCLUSIONS: Our findings highlight the struggle children and parents often face when attempting to make sense of the child's advanced or high-risk illness. Clinicians might consider if meaning-centered interventions designed for use in adults at the end of life and bereaved parents may be helpful for children with advanced or high-risk cancer and their parents.
Identifier
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<a href="http://doi.org/10.1002/pon.5601" target="_blank" rel="noreferrer noopener">10.1002/pon.5601</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).
2021
2021 Special Edition - Oncology
Gerhardt CA
Himelhoch AC
Howard Sharp KM
Humphrey L
Kenney AE
Olshefski R
Oncology
Psycho-Oncology
Schaefer MR
Young-Saleme T
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1089/jpm.2020.0139" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2020.0139</a>
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Title
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Randomized Clinical Trial of a Legacy Intervention for Quality of Life in Children with Advanced Cancer
Publisher
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Journal of Palliative Medicine
Date
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2021
Subject
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Oncology
Creator
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Akard TF; Dietrich MS; Friedman DL; Wray S; Gerhardt CA; Hendricks-Ferguson V; Hinds PS; Rhoten B; Gilmer MJ
Description
An account of the resource
Background: Legacy-making (actions/behaviors aimed at being remembered) may be a significant component for quality of life (QOL) during advanced illness and end of life. Although legacy interventions have been tested in adults, the impact of legacy activities on QOL for children has yet to be clearly defined. Objective: This study examined the impact of our newly developed web-based legacy intervention on dimensions of QOL among children (7-17 years old) with advanced cancer. Design: This single-site randomized clinical trial (RCT) used a two-group waitlist control design. The legacy intervention guided children to create digital storyboards by directing them to answer legacy questions about themselves (personal characteristics, things they like to do, and connectedness with others) and upload photographs, video, and music. Setting/Subjects: Facebook advertisements recruited children (ages 7-17) with relapsed/refractory cancer and their parents from the United States. Child-parent dyads (N = 150) were randomized to the intervention or usual care group, and 97 dyads were included for analysis. Measurements: Children and parents completed the PedsQL Cancer Module preintervention (T1) and post-intervention (T2). Results: Although not statistically significant, legacy-making demonstrated small effects in child procedural anxiety and perceived physical appearance (Cohen's d 0.35-0.28) compared to the wait-list control group. Conclusions: This study contributes important discoveries, including support for the feasibility of a RCT web-based legacy intervention for children with advanced cancer. We did not find convincing evidence supporting the hypothesis that legacy-making improved child dimensions of QOL across time. Overall, this is a null study that warrants discussion on possible reasons for limited findings. Future legacy intervention research is needed using qualitative and quantitative methods, as well as child and parent reports, to determine how such services may improve dimensions of QOL for pediatric palliative care populations. ClinicalTrials.gov number NCT04059393.
Identifier
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<a href="http://doi.org/10.1089/jpm.2020.0139" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0139</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).
2021
2021 Special Edition - Oncology
Akard TF
Dietrich MS
Friedman DL
Gerhardt CA
Gilmer MJ
Hendricks-Ferguson V
Hinds PS
Journal of Palliative Medicine
Oncology
Rhoten B
Wray S
-
Dublin Core
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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/10.1089/jpm.2022.0408" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2022.0408</a>
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Characteristics of Critically Ill Infants at the End of Life in the Neonatal Intensive Care Unit
Publisher
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Journal of Palliative Medicine
Date
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2023
Subject
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Critical Illness; Intensive Care Units Neonatal; Aged; Child; Critical Illness; Death; Female; Humans; Infant; Infant Newborn; Intensive Care Units; Intensive Care Units Neonatal; Male; Palliative Care; Retrospective Studies
Creator
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Fortney CA; Baughcum AE; Garcia D; Winning AM; Humphrey L; Cistone N; Moscato EL; Keim MC; Nelin LD; Gerhardt CA
Description
An account of the resource
Objectives: About 16,000 infants die in the neonatal intensive care unit (NICU) each year with many experiencing invasive medical treatments and high number of symptoms.1 To inform better management, we characterized diagnoses, symptoms, and patterns of care among infants who died in the NICU. Method: Retrospective electronic medical record (EMR) review of 476 infants who died following admission to a large regional level IV NICU in the United States over a 10-year period. Demographic, symptom, diagnosis, treatment, and end-of-life characteristics were extracted. Results: About half of infants were male (55.9%, n = 266), average gestational age was 31.3 weeks (standard deviation [SD] = 6.5), and average age at death was 40.1 days (SD = 84.5; median = 12; range: 0-835). Race was documented for 65% of infants, and most were White (67.0%). One-third of infants (n = 138) were seen by fetal medicine. Most infants experienced pain through both the month and week before death (79.6%), however, infants with necrotizing enterocolitis had more symptoms in the week before death. Based on EMR, infants had more symptoms, and received more medical interventions and comfort measures during the week before death compared with the month prior. Only 35% (n = 166) received a palliative care referral. Conclusions: Although the medical profiles of infants who die in the NICU are complex, the overall number of symptoms was less than in older pediatric populations. For infants at high risk of mortality rate, providers should assess for common symptoms over time. To manage symptoms as effectively as possible, both timely and continuous communication with parents and early referral to palliative care are recommended.
Identifier
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<a href="http://doi.org/10.1089/jpm.2022.0408" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0408</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
Aged
Baughcum AE
Child
Cistone N
Critical Illness
Death
Female
Fortney CA
Garcia D
Gerhardt CA
Humans
Humphrey L
Infant
Infant Newborn
Intensive Care Units
Intensive Care Units Neonatal
Journal of Palliative Medicine
July List 2023
Keim MC
Male
Moscato EL
Nelin LD
Palliative Care
Retrospective Studies
Winning AM
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1017/S1478951522001018" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S1478951522001018</a>
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Title
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Factors associated with mental health service use among families bereaved by pediatric cancer
Publisher
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Palliative and Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
child; Bereavement; article; controlled study; female; human; major clinical study; male; palliative therapy; education; sibling; Mental Health Services; bereavement; cooperation; distress syndrome; randomized controlled trial; health care personnel; self report; multicenter study; race; mother; home visit; malignant neoplasm; demography; father; support group; self help; educational status; mental health service; Child Behavior Checklist
Creator
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Hill KN; Olsavsky A; Barrera M; Gilmer MJ; Fairclough DL; Akard TF; Compas BE; Vannatta K; Gerhardt CA
Description
An account of the resource
OBJECTIVES: We identified types of interventions used by bereaved family members and examined associations with demographic and medical factors. Furthermore, we examined associations between distress and intervention use among bereaved families. METHOD(S): Bereaved families (n = 85) were recruited from three children's hospitals 3-12 months after their child died of cancer. One eligible sibling (ages 8-17) per family was randomly selected for participation. During home visits 1-year post-death, parents reported on their own and the sibling's intervention use, helpfulness, and dose (self-help books, support groups, therapy, medication), and distress, defined as internalizing, externalizing, and total problems (Adult Self Report, Child Behavior Checklist). RESULT(S): Fifty percent of mothers used medications (n = 43); utilization was low among fathers (17%, n = 9) and siblings (5%, n = 4). Individuals with more total problems were more likely to use medications (mothers: rpb = 0.27; p = 0.02; fathers: rpb = 0.32; p = 0.02; siblings: rpb = 0.26; p = 0.02). Mothers and siblings with more total problems used more services (r = 0.24; p = 0.03 and r = 0.29; p = 0.01, respectively). Among mothers, the overall regression was significant, R2 = 0.11, F(2, 80) = 4.954, p = 0.01; the deceased child's age at death was significantly associated with total services used (b = 0.052, p = 0.022). Among fathers, the overall regression was significant, R2 = 0.216, F(3, 49) = 4.492, p = 0.007; race and years of education were significantly associated with total services used (b = 0.750, p = 0.030 and b = 0.154, p = 0.010). Among siblings, the overall regression was significant R2 = 0.088, F(2, 80) = 3.867, p = 0.025; greater total problems were significantly associated with total services used (b = 0.012, p = 0.007). SIGNIFICANCE OF RESULTS: Although few background factors were related to intervention use, bereaved mothers and siblings may seek services if they have more distress. Healthcare providers should be aware of the types of services that are most often utilized and helpful to bereaved families to connect them with appropriate resources. Future research should investigate other predictors of intervention use and outcomes after the death of a child.
Identifier
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<a href="http://doi.org/10.1017/S1478951522001018" target="_blank" rel="noreferrer noopener">10.1017/S1478951522001018</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
2023 SE3 - Oncology
Akard TF
Article
Barrera M
Bereavement
Child
Child Behavior Checklist
Compas BE
Controlled Study
Cooperation
Demography
Distress Syndrome
Education
Educational Status
Fairclough DL
Father
Female
Gerhardt CA
Gilmer MJ
Health Care Personnel
Hill KN
Home Visit
Human
Major Clinical Study
Male
Malignant Neoplasm
mental health service
Mental Health Services
Mother
Multicenter Study
Olsavsky A
Palliative And Supportive Care
Palliative Therapy
race
Randomized Controlled Trial
self help
Self Report
Sibling
support group
Vannatta K