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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
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
A name given to the resource
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>
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
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 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
October 2021 List
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2021.22818" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamanetworkopen.2021.22818</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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Complexity of Medication Regimens for Children With Neurological Impairment
Publisher
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JAMA Network Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
children with neurologic impairment; complex medication regimens; Cross-Sectional Studies; Parent support
Creator
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Feinstein JA; Friedman H; Orth LE; Feudtner C; Kempe A; Samay S; Blackmer AB
Description
An account of the resource
IMPORTANCE: Parents of children with severe neurological impairment (SNI) manage complex medication regimens (CMRs) at home, and clinicians can help support parents and simplify CMRs. OBJECTIVE: To measure the complexity and potentially modifiable aspects of CMRs using the Medication Regimen Complexity Index (MRCI) and to examine the association between MRCI scores and subsequent acute visits. DESIGN, SETTING, AND PARTICIPANTS: This cross-sectional study was conducted between April 1, 2019, and December 31, 2020, at a single-center, large, hospital-based, complex care clinic. Participants were children with SNI aged 1 to 18 years and 5 or more prescribed medications. EXPOSURE: Home medication regimen complexity was assessed using MRCI scores. The total MRCI score is composed of 3 subscores (dosage form, dose frequency, and specialized instructions). MAIN OUTCOMES AND MEASURES: Patient-level counts of subscore characteristics and additional safety variables (total doses per day, high-alert medications, and potential drug-drug interactions) were analyzed by MRCI score groups (low, medium, and high score tertiles). Associations between MRCI score groups and acute visits were tested using Poisson regression, adjusted for age, complex chronic conditions, and recent health care use. RESULTS: Of 123 patients, 73 (59.3%) were male with a median (interquartile range [IQR]) age of 9 (5-13) years. The median (IQR) MRCI scores were 46 (35-61 [range, 8-139]) overall, 29 (24-35) for the low MRCI group, 46 (42-50) for the medium MRCI group, and 69 (61-78) for the high MRCI group. The median (IQR) counts for the subscores were 6 (4-7) dosage forms per patient, 7 (5-9) dose frequencies per patient, and 5 (4-8) instructions per patient, with counts increasing significantly across higher MRCI groups. Similar trends occurred for total daily doses (median [IQR], 31 [20-45] doses), high-alert medications (median [IQR], 3 [1-5] medications), and potential drug-drug interactions (median [IQR], 3 [0-6] interactions). Incidence rate ratios of 30-day acute visits were 1.26 times greater (95% CI, 0.57-2.78) in the medium MRCI group vs the low MRCI group and 2.42 times greater (95% CI, 1.10-5.35) in the high MRCI group vs the low MRCI group. CONCLUSIONS AND RELEVANCE: Higher MRCI scores were associated with multiple dose frequencies, complicated by different dosage forms and instructions, and associated with subsequent acute visits. These findings suggest that clinical interventions to manage CMRs could target various aspects of these regimens, such as the simplification of dosing schedules.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jamanetworkopen.2021.22818" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2021.22818</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
Blackmer AB
children with neurologic impairment
complex medication regimens
Cross-sectional Studies
Feinstein JA
Feudtner C
Friedman H
JAMA Network Open
Kempe A
October 2021 List
Orth LE
parent support
Samay S
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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
Special Edition #1 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1080/07481187.2020.1850548" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/07481187.2020.1850548</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Belonging to a Community of Care: Mothers' Experiences of Online Peer Support Groups for Parents Having Lost a Child with Congenital Heart Defects
Publisher
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Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Child death; mother grief; peer support; parent support
Creator
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Klarare A; Carlsson T; Mattsson E
Description
An account of the resource
The aim was to study mothers' experiences of online peer support groups after the death of a child. Participants (N = 8) were recruited through a newsletter for the Swedish association for families/children with heart defects, and two closed support groups on Facebook (900 and 100 members) and interviewed by telephone. Transcripts were analyzed with qualitative content analysis. The groups were available around the clock, regardless of support need, and mothers joined both to receive and provide support. Participation in online peer support groups may provide a sense of belonging to a caring community and serve as a valuable complement to healthcare.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/07481187.2020.1850548" target="_blank" rel="noreferrer noopener">10.1080/07481187.2020.1850548</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
2022 Special Edition 1 - Parent Perspectives
Carlsson T
Child Death
Death studies
Klarare A
Mattsson E
Mother Grief
parent support
Peer Support