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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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September 2022 List
Text
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September 2022 List
URL Address
<a href="http://doi.org/10.1111/dmcn.15184" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.15184</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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Advance Care Plan Discussion among Parents of Children with Cerebral Palsy
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Developmental Medicine and Child Neurology
Date
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2022
Subject
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Child; Comorbidity; Terminal care; Cerebral palsy; Advance care plan; School
Creator
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Khalid F; Ng Voon SI; Ong L C; Lim WK; Li L; Adnan A; Ganesan V; Teh C M; Fong CY
Description
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Aim: To evaluate parental perception of advance care plan (ACP) discussions in families of Malaysian children with bilateral cerebral palsy (CP) classified in Gross Motor Function Classification System levels IV or V for (1) acceptance of the ACP discussion, (2) feedback on the usefulness of ACP discussion, and (3) exploration of possible factors related to parental acceptance of ACP. Method: This was a prospective pre- and post-ACP discussion questionnaire study for parents of children with bilateral CP. Results: Sixty-nine patients were recruited to the study; 64 (93%) had at least one additional comorbidity. The median age was 8 years (interquartile range 5 years 1 month-11 years 6 months). Fifty-seven (82.6%) parents found the ACP discussion acceptable, and most reported positive feedback on various components of the discussion (88.4-97.1%). One-third of participants were not comfortable discussing end-of-life care plans. On multivariate analysis, parents who were comfortable discussing end-of-life care plans were more likely to find the ACP discussion acceptable (odds ratio 27.78, 95% confidence interval 2.9-265.1, p = 0.004). Interpretation: Most parents of Malaysian children with bilateral CP reported the ACP discussion as both acceptable and beneficial. Parents need to be comfortable about discussing end-of-life care plans for their child to enable the ACP discussion to be an acceptable experience.
Identifier
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<a href="http://doi.org/10.1111/dmcn.15184" target="_blank" rel="noreferrer noopener">10.1111/dmcn.15184</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).
2022
Adnan A
advance care plan
Cerebral Palsy
Child
Comorbidity
Developmental Medicine and Child Neurology
Fong CY
Ganesan V
Khalid F
Li L
Lim WK
Ng Voon SI
Ong L C
School
September 2022 List
Teh C M
Terminal Care
-
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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January 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
January 2020 List
URL Address
<a href="http://doi.org/10.2196/15106" target="_blank" rel="noreferrer noopener">http://doi.org/10.2196/15106</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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Use of Synchronous Digital Health Technologies for the Care of Children With Special Health Care Needs and Their Families: Scoping Review
Publisher
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JMIR Pediatrics and Parenting
Date
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2019
Subject
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asthma; children with special health care needs; co-design; congenital heart disease; digital health; palliative care; pediatrics; scoping review
Creator
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Bird M; Li L; Ouellette C; Hopkins K; McGillion M H; Carter N
Description
An account of the resource
BACKGROUND: Use of synchronous digital health technologies for care delivery to children with special health care needs (having a chronic physical, behavioral, developmental, or emotional condition in combination with high resource use) and their families at home has shown promise for improving outcomes and increasing access to care for this medically fragile and resource-intensive population. However, a comprehensive description of the various models of synchronous home digital health interventions does not exist, nor has the impact of such interventions been summarized to date. OBJECTIVE: We aim to describe the various models of synchronous home digital health that have been used in pediatric populations with special health care needs, their outcomes, and implementation barriers. METHODS: A systematic scoping review of the literature was conducted, guided by the Arksey and O'Malley Scoping Review Framework. MEDLINE, CINAHL, and EMBASE databases were searched from inception to June 2018, and the reference lists of the included systematic reviews and high-impact journals were hand-searched. RESULTS: A total of 38 articles were included in this review. Interventional articles are described as feasibility studies, studies that aim to provide direct care to children with special health care needs, and studies that aim to support family members to deliver care to children with special health care needs. End-user involvement in the design and implementation of studies is evaluated using a human-centered design framework, and factors affecting the implementation of digital health programs are discussed in relation to technological, human, and systems factors. CONCLUSIONS: The use of digital health to care for children with special health care needs presents an opportunity to leverage the capacity of technology to connect patients and their families to much-needed care from expert health care providers while avoiding the expenses and potential harms of the hospital-based care system. Strategies to scale and spread pilot studies, such as involving end users in the co-design techniques, are needed to optimize digital health programs for children with special health care needs.
Identifier
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<a href="http://doi.org/10.2196/15106" target="_blank" rel="noreferrer noopener">10.2196/15106</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
Asthma
Bird M
Carter N
Children With Special Health Care Needs
co-design
Congenital Heart Disease
digital health
Hopkins K
January 2020 List
JMIR Pediatrics and Parenting
Li L
McGillion M H
Ouellette C
Palliative Care
Pediatrics
Scoping review