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Dublin Core
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Title
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June 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.
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June 2021 List
URL Address
<a href="http://doi.org/10.1080/07481187.2019.1648333" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/07481187.2019.1648333</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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A photovoice study on the bereavement experience of mothers after the death of a child
Publisher
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Death Studies
Date
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2021
Subject
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bereavement; loss of a child; parental experience; pediatric oncology; photovoice
Creator
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Kim MA; Yi J; Sang J; Jung D
Description
An account of the resource
This study explored the bereavement experience of mothers after losing a child to cancer in Korea, using photovoice. The mothers took photos reflecting five subject areas they selected: (a) if I had one more day with my child, (b) memories with my child, (c) dreaming of my child's healthy future, (d) what gave me strength, and (e) fulfilling my child's wishes for the future. The findings show that mothers who lost a child to cancer need bereavement care to promote well-being. This study can help pediatric oncology providers develop bereavement interventions that address parental grief and improve quality of life.
Identifier
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<a href="http://doi.org/10.1080/07481187.2019.1648333" target="_blank" rel="noreferrer noopener">10.1080/07481187.2019.1648333</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
Bereavement
Death studies
June 2021 List
Jung D
Kim MA
loss of a child
parental experience
Pediatric Oncology
photovoice
Sang J
Yi J
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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
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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/10.1136/bmjopen-2019-034024" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjopen-2019-034024</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Health of mothers of children with a life-limiting condition: A comparative cohort study
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Children with life-threatening or life-limiting illnesses; morbidity; Mothers/psychology; parental experience
Creator
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Fraser LK; Murtagh FEM; Aldridge J; Sheldon T; Gilbody S; Hewitt C
Description
An account of the resource
Objective: This study aimed to quantify the incidence rates of common mental and physical health conditions in mothers of children with a life-limiting condition. Method(s): Comparative national longitudinal cohort study using linked primary and secondary care data from the Clinical Practice Research Datalink in England. Maternal-child dyads were identified in these data. Maternal physical and mental health outcomes were identified in the primary and secondary care datasets using previously developed diagnostic coding frameworks. Incidence rates of the outcomes were modelled using Poisson regression, adjusting for deprivation, ethnicity and age and accounting for time at risk. Result(s): A total of 35 683 mothers; 8950 had a child with a life-limiting condition, 8868 had a child with a chronic condition and 17 865 had a child with no long-term condition. The adjusted incidence rates of all of the physical and mental health conditions were significantly higher in the mothers of children with a life-limiting condition when compared with those mothers with a child with no long-term condition (eg, depression: incidence rate ratio (IRR) 1.21, 95% CI 1.13 to 1.30; cardiovascular disease: IRR 1.73, 95% CI 1.27 to 2.36; death in mothers: IRR 1.59, 95% CI 1.16 to 2.18). Conclusion(s): This study clearly demonstrates the higher incidence rates of common and serious physical and mental health problems and death in mothers of children with a life-limiting condition. Further research is required to understand how best to support these mothers, but healthcare providers should consider how they can target this population to provide preventative and treatment services. Copyright © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/bmjopen-2019-034024" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2019-034024</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
Aldridge J
Archives of Disease in Childhood
Children With Life-threatening Or Life-limiting Illnesses
Fraser LK
Gilbody S
Hewitt C
May 2021 List
Morbidity
Mothers/psychology
Murtagh FEM
parental experience
Sheldon T
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Dublin Core
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Title
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2020 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1080/07347332.2020.1762822" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/07347332.2020.1762822</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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You are at rock bottom: A qualitative systematic review of the needs of bereaved parents as they journey through the death of their child to cancer
Publisher
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Journal of Psychosocial Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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social support; pediatric cancer; parental experience; meaning making; emotional support; parent support; practical support
Creator
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Kenny M; Darcy-Bewick S; Martin A; Eustace-Cook J; Hilliard C; Clinton F; Storey L; Coyne I; Murray K; Duffy K; Fortune G; Smith O; Higgins A; Hynes G
Description
An account of the resource
Problem Identification: This systematic review will examine the social support needs of bereaved parents in the specific context of pediatric cancer by synthesizing the qualitative evidence. Social support encompasses emotional, practical, informational, and meaning-making support needs.Literature Search: The Joanna Briggs Institute procedures for conducting qualitative systematic reviews guided every stage of this review. Four databases (PsychInfo, CINAHL, Pubmed, and ASSIA) were systematically searched, in addition to the gray literature and scoping review. Through a five-step critical appraisal process 11 out of 668 potential articles were identified as meeting the inclusion criteria.Data Evaluation/Synthesis: Relevant findings were synthesized with a thematic-synthesis approach. Findings, which follow the journey of bereaved parents integrated under the core-category "Needs." This encompasses of four higher-level categories: Last days: Parent needs when caring for their dying childRest in peace: Parent needs during the child's deathFeeling abandoned: Parent needs for contact after the child's deathSearching for Meaning: Parents needs when making sense of lossConclusion: Informational support needs is largely unexplored in academic literature. Staff in the treating-hospital are central in offering bereavement-support to parents, who may otherwise feel that they have lost their second home (hospital) and second family (staff).
Identifier
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<a href="http://doi.org/10.1080/07347332.2020.1762822" target="_blank" rel="noreferrer noopener">10.1080/07347332.2020.1762822</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
Clinton F
Coyne I
Darcy-Bewick S
Duffy K
emotional support
Eustace-Cook J
Fortune G
Higgins A
Hilliard C
Hynes G
Journal Of Psychosocial Oncology
Kenny M
Martin A
meaning making
Murray K
Oncology 2020 List
parent support
parental experience
Pediatric Cancer
practical support
Smith O
Social Support
Storey L
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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October 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2020 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2018-001543" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2018-001543</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Place bonding' in children's hospice care: a qualitative study
Publisher
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BMJ Supportive & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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hospice; parent experiences; parent perspectives; parental experience; parental perspectives; pediatrics; place bonding
Creator
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Dunbar H; Carter B; Brown J
Description
An account of the resource
BACKGROUND: Limited knowledge exists of parents' perceptions and experiences of children's hospices and how these contribute to the varied access and uptake of services. AIM: This study aimed to explore parents' perspectives and experiences of a hospice, to understand the barriers and/or facilitators to accessing a hospice, and what characteristics parents wanted from hospice provision. METHOD(S): A two-phase qualitative study underpinned by a constructivist grounded theory methodology was employed. Phase 1 used focus groups to collect data from parents of children already accessing the hospice (n=24). Phase 2 used in-depth semistructured interviews with parents of children who did not use the hospice (n=7) and with parents who had previous experience of using a hospice (n=7). RESULT(S): A grounded theory of place bonding was developed which illustrates the cognitive journey taken by parents of children with life-limiting conditions considering/receiving hospice care for their child. CONCLUSION(S): Finding a place where they belonged and felt at 'home' made the decision to accept help in caring for their child with a life-limiting condition more acceptable. The theory of place bonding offers children's hospices a new perspective from which to view how parents access, accept and build relationships at the hospice. Copyright © Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2018-001543" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001543</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
BMJ Supportive & Palliative Care
Brown J
Carter B
Dunbar H
Hospice
October 2020 List
Parent Experiences
parent perspectives
parental experience
Parental Perspectives
Pediatrics
Place bonding
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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
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August 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.078" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.04.078</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Quality of Life of Children and Adolescents Undergoing Hematopoietic Stem Cell Transplantation Is Negatively Affected by Psychological Distress Experienced by Their Parents: A Case for Pediatric Palliative Care (RP410)
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
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chimeric antigen receptor t-cell therapy; hematopoietic stem cell transplantation; parental experience; pediatric palliative care; quality of life
Creator
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Balian C; Ward J; Murray P
Description
An account of the resource
Objectives: * State the elements and trajectory of distress for parents caring for children and adolescents undergoing hematopoietic stem cell transplantation (HSCT) or chimeric antigen receptor (CAR) T-cell therapy. * Examine the impact of parent distress on symptoms and quality of life (QoL) experienced by children and adolescents undergoing HSCT or CAR T-cell therapy. Importance: Hematopoietic stem cell transplantation (HSCT) is curative for children with life-threatening conditions but can result in compromised quality of life (QoL). Parents provide extensive care for their children and can experience distress, yet the association between parent and child outcomes has not been sufficiently investigated. Objective(s): To examine the impact of parent distress on QoL among children undergoing HSCT or chimeric-antigen receptor (CAR) T cell therapy. Method(s): This multisite study employed a longitudinal, repeated measures design. English or Spanish-speaking children ages 2-18 years, with any diagnosis, and planned HSCT or CAR therapy were eligible. Beck Anxiety and Depression Inventories, the Perceived Stress Scale and the PROMIS Sleep and Fatigue Short Forms were administered to parents pre-HSCT/CAR, and day+30, +60, +90 post-HSCT/CAR. The PedsQL Cancer Module was administered to children (parent-proxy for younger children) at corresponding timepoints. Descriptive statistics and longitudinal parallel process (type of effect modeling) analyses were used to explore relationships between parent distress (a single factor consisting of sleep, fatigue, anxiety, depression and stress) and child outcomes. Result(s): To date, 139 child/parent dyads (278 participants) were enrolled across 4 sites. Child mean age was 8.3 years (SD=4.9), 57% were male, primarily with an underlying diagnosis of malignancy (68.9%). Most parents were mothers (79.1%), mean age of 38.9 years (SD=8.1). Parent anxiety, depression and stress scores were higher than normative means generated from non-psychiatric samples. A significant inverse relationship between parent distress and child QoL was found at baseline and over time post-HSCT. When parent distress was higher at baseline, child QoL was lower. When parent distress increased over time, child QoL decreased. Conclusion(s): Findings suggest that parents experience heightened distress during the acute phase of their child's HSCT or CAR therapy, and this may impact their child's QoL. Impact: Up front palliative care involvement and integration should be considered for children undergoing HSCT or CAR therapy to address parent and child distress. Copyright © 2020
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.078" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.04.078</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
August 2020 List
Balian C
chimeric antigen receptor t-cell therapy
Hematopoietic stem cell transplantation
Journal of Pain and Symptom Management
Murray P
parental experience
Pediatric Palliative Care
Quality Of Life
Ward J
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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
September 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2019 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2018-001705" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2018-001705</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Children's unmet palliative care needs: a scoping review of parents' perspectives
Publisher
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BMJ Supportive Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
advance care planning; paediatric palliative care; review; hospice care; parental experience; service evaluation
Creator
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Constantinou G; Garcia R; Cook E; Randhawa G
Description
An account of the resource
BACKGROUND: Children with life-limiting conditions often have complex needs, making it challenging for services to provide satisfactory care. Few studies consider whether services actually meet families' needs by exploring and identifying the parents' perspectives of unmet needs. AIM: To identify what published evidence is available on the unmet needs of children with life-limiting conditions and their families, from the perspective of parents, internationally. ELIGIBILITY CRITERIA: Inclusion criteria: papers from the perspective of parents of children aged 0-19 years, who have a life-limiting condition and are receiving palliative care. Exclusion criteria: those papers not written in English, not reporting primary research and discussing children who died from stillbirth, accidental or unexpected circumstance. CHARTING METHODS: A scoping review was conducted in accordance with the methods of Arksey and O'Malley. SOURCES OF EVIDENCE: The electronic databases PubMed, MEDLINE, CINAHL and PsycINFO were searched. Key terms included: parent, needs, met/unmet/satisfaction, palliative/supportive/end of life care, life-limiting/life-threatening illness, infants/children/young people. RESULTS: Total hit indicated 5975 papers for screening. Fifty-five papers met the scoping review criteria. The majority used mixed-methods approaches inclusive of: questionnaires, self-report measures, in-depth interviews, focus groups, case record analysis and art-based workshops. Unmet needs included: respite care, coordination and organisation of care, psychological support and professional communication skills. CONCLUSIONS: The findings suggest many unmet needs from the parent's perspective, across several aspects of the Quality Standards and Children's Palliative Care Frameworks. Further research is needed which explores the parent's unmet needs in palliative care services.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjspcare-2018-001705" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001705</a>
Rights
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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
Advance Care Planning
Bmj Supportive Palliative Care
Constantinou G
Cook E
Garcia R
Hospice Care
paediatric palliative care
parental experience
Randhawa G
Review
September 2019 List
Service Evaluation