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40
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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2023 Special Edition 2 - Parent Perspectives List
Text
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Citation List Month
2027 SE2 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1097/DBP.0000000000001168" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/DBP.0000000000001168</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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Parent-Reported Caregiving Roles of Siblings of Children with Inborn Errors of Metabolism
Publisher
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Journal of Developmental and Behavioral Pediatrics
Date
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2023
Subject
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caregiving; disabilities; inherited metabolic disorders; psychosocial support; siblings
Creator
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Granovetter MA; Sumrall S; Lea D; Gelles S; Koehly LM
Description
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ABSTRACT: Objectives: Research examining sibling caregiving contributions to medically complex pediatric patients, including those with inborn errors of metabolism (IEMs), is limited. We assess caregiving roles and attributes of siblings and hypothesize that there will be differences in parent-reported contributions among siblings of children with IEMs and siblings of typically developing (TD) children. Study design: A convergent parallel mixed-methods study design guided analysis of data from parental surveys and semistructured interviews. Interviews were conducted with parents (n = 49) of children with IEMs and parents (n = 28) of exclusively TD children. We used inductive thematic analysis to identify themes related to sibling caregiving. The caregiving and support roles for siblings (n = 55) of children with IEMs and siblings (n = 42) of TD children were coded to assess each sibling's caregiving contributions and personal attributes. Results: Logistic regressions, using generalized estimating equations, were fitted. Results showed that siblings of children with IEMs were significantly more likely to provide monitoring (odds ratio [OR]: 3.62, confidence interval [CI]: 1.30–10.07) and emotional/social support (OR: 4.02, CI: 1.67–9.67) than siblings of TD children. Themes arising from interviews with parents of children with IEMs focused on sibling attributes, parental expectations regarding sibling caregiving, and challenges to the sibling-sibling and parent-sibling relationships. Themes revealed nuances in the sibling caregiving experience. Conclusion: Siblings of children with IEMs make meaningful caregiving contributions and may provide care differently than siblings of TD children. Understanding childhood caregiving roles may inform how health care providers and parents encourage sibling caregiving contributions into adulthood.
Identifier
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<a href="http://doi.org/10.1097/DBP.0000000000001168" target="_blank" rel="noreferrer noopener">10.1097/DBP.0000000000001168</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
2027 SE2 - Parent Perspectives
Caregiving
Disabilities
Gelles S
Granovetter MA
inherited metabolic disorders
Journal Of Developmental And Behavioral Pediatrics
Koehly LM
Lea D
psychosocial support
Siblings
Sumrall S
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Dublin Core
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Title
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April 2023 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
April List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2022.12.043" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpeds.2022.12.043</a>
Dublin Core
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Paying Family Medical Caregivers for Children's Home Healthcare in Colorado: A Working Medicaid Model
Publisher
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The Journal of Pediatrics
Date
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2023
Subject
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children with medical complexity; Medicaid; children with special health care needs; Colorado; Caregiving
Creator
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Foster C; Kwon S; Blakely C; Carter K; Sobotka SA; Goodman DM; Agrawal R; Brittan M
Description
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OBJECTIVE: To compare the characteristics and healthcare utilization of children with medical complexity (CMC) who receive paid certified nursing assistant (CNA) care by a family member (family CNA) and by a traditional non-family member (non-family CNA). STUDY DESIGN: This was retrospective cohort study of children who received CNA care through Colorado's Medicaid paid family caregiving program between 2017-2019 by a home healthcare agency. We compared patient characteristics between the family CNA and non-family CNA groups. A multivariable Poisson regression model was used to compare hospitalization rates (days in the hospital per year), adjusting for patient age patient sex, nursing care, and complex chronic condition. RESULTS: Of 861 patients, 79% (N=680) received family CNA care and 21% (N=181) received non-family CNA care. Patient demographics and hospitalization did not differ between the groups, although family CNA patients were less likely to receive additional nursing-level care (42% versus 60%, p<0.01). Family and non-family CNA caregivers had similar characteristics, except that family CNA caregivers had substantially better 3-year retention (82% versus 9%, p<0.01) despite lower average hourly pay ($14.60 vs. $17.60 per hour, p<0.01). Hospitalizations were rare (<10% of patients). In the adjusted model, family CNA patients experienced 1 more hospitalized day per year, compared with non-family CNA patients (p<0.001). CONCLUSIONS: Paid family caregivers provided CNA level care to CMC with a greater employee retention compared with non-family CNA caregivers, with marginally different hospitalization rates using a family-centered approach. This model may help address workforce shortages while also providing income to family caregivers.
Identifier
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<a href="http://doi.org/10.1016/j.jpeds.2022.12.043" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2022.12.043</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Agrawal R
April List 2023
Blakely C
Brittan M
Caregiving
Carter K
Children With Medical Complexity
Children With Special Health Care Needs
Colorado
Foster C
Goodman DM
Kwon S
Medicaid
Sobotka SA
The Journal Of Pediatrics
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Dublin Core
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Title
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2019 Oncology List
Text
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Citation List Month
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2019.0078" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2019.0078</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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Effects of the Values and Options in Cancer Care Communication Intervention on Personal Caregiver Experiences of Cancer Care and Bereavement Outcomes
Publisher
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Journal of Palliative Medicine
Date
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2019
Subject
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bereavement; cancer; caregiving; communication interventions; patient-physician communication; prolonged grief; purpose in life; satisfaction with care
Creator
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Duberstein P R; Maciejewski P K; Epstein R M; Fenton J J; Chapman B; Norton S A; Hoerger M; Wittink M N; Tancredi D J; Xing G; Mohile S; Kravitz R L; Prigerson H G
Description
An account of the resource
Background: Care teams are increasingly expected to attend to the needs of patient's personal caregivers (e.g., family members). Improving communication among oncologists, patients with advanced cancer, and their personal caregivers might enhance caregivers' experiences of end-of-life (EoL) cancer care and bereavement outcomes. Objective: To explore the effects of the Values and Options in Cancer Care intervention on caregivers' experiences of EoL care and bereavement outcomes. Design: We developed a brief behavioral intervention to improve communication among oncologists, patients with advanced cancer, and their personal caregivers. The intervention was designed to help patients/caregivers ask questions, express concerns, and help oncologists respond effectively. We randomly assigned oncologists (and their patients/caregivers) to the intervention or usual care. Setting/Subjects: Medical oncologists in NY and CA; patients/personal caregivers with advanced cancer. Measurements: Two months after the patient's death, caregivers completed three instruments assessing their experiences of EoL care. Seven months after the patient's death, caregivers completed the Prolonged Grief Disorder-13 (PG-13; primary prespecified outcome), the Purpose-in-Life scale, and scales assessing mental health function, depression, and anxiety. Results: The intervention did not significantly improve caregivers' scores on the PG-13 (p = 0.21), mental health function, depression, or anxiety, but it did improve purpose-in-life scores (p = 0.018). Cohen's d (95% confidence interval) for all three experiences of EoL care outcomes were promising, ranging from 0.22 (-0.19 to 0.63) to 0.39 (-0.07 to 0.86) although none was statistically significant. Conclusion: Preliminary findings show promise that scalable interventions in cancer care settings may improve caregiver experiences with cancer care and some bereavement outcomes.
Identifier
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<a href="http://doi.org/10.1089/jpm.2019.0078" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0078</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).
2019
Bereavement
Cancer
Caregiving
Chapman B
communication interventions
Duberstein P R
Epstein R M
Fenton J J
Hoerger M
Journal of Palliative Medicine
Kravitz R L
Maciejewski P K
Mohile S
Norton S A
Oncology 2019 List
patient-physician communication
Prigerson H G
prolonged grief
purpose in life
satisfaction with care
Tancredi D J
Wittink M N
Xing G
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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
July 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
July 2019 List
URL Address
<a href="http://doi.org/10.1007/s00431-019-03393-w" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1007/s00431-019-03393-w</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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Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study
Publisher
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European Journal of Pediatrics.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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article; child; female; human; male; palliative therapy; controlled study; qualitative research; thematic analysis; Coping; Paediatrics; pediatrics; clinical article; coping behavior; decision making; interview; child care; anxiety; Caregiving; child parent relation; Experiences; grief; Palliative care; Parents; perception; tension; uncertainty
Creator
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Verberne L M; Kars M C; Schouten-van Meeteren A Y N; van den Bergh E M M; Bosman D K; Colenbrander D A; Grootenhuis M A; van Delden J J M
Description
An account of the resource
Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals' support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palliative care is needed. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with malignant or non-malignant diseases receiving palliative care. Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s). Conclusion(s): Parents need healthcare professionals who understand and carefully handle their worries, losses, parent-child relationship and coping strategies.What is Known:* In paediatric palliative care, parents have a daunting task in fulfilling all caregiving tasks while striving for control of their child's symptoms, a life worth living and a family balance.What is New:* Prominent experiences were: continuous management of anxiety of child loss, feelings of uncertainty, tension with end-of-life decision making and engagement with professionals. Parents experienced unique significance to their child, reinforcing a meaningful parent-child relationship.* Relevant coping strategies were: suppressing emotions, seeking support, taking control to arrange optimal care and adapting to the ongoing changes.* To provide tailored support, professionals need to understand parents' perceptions, relationship with their child and coping strategies. Copyright © 2019, The Author(s).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00431-019-03393-w" target="_blank" rel="noreferrer noopener">10.1007/s00431-019-03393-w</a>
2019
anxiety
Article
Bosman D K
Caregiving
Child
Child Care
Child Parent Relation
Clinical Article
Colenbrander D A
Controlled Study
Coping
Coping Behavior
Decision Making
European Journal of Pediatrics.
Experiences
Female
Grief
Grootenhuis M A
Human
Interview
July 2019 List
Kars M C
Male
Paediatrics
Palliative Care
Palliative Therapy
Parents
Pediatrics
Perception
Qualitative Research
Schouten-van Meeteren A Y N
tension
Thematic Analysis
Uncertainty
van Delden J J M
van den Bergh E M M
Verberne L M