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40
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Title
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April 2023 List
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April List 2023
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<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>
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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
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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>
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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
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
-
Dublin Core
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Title
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January 2022 List
Text
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January 2022 List
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<a href="http://doi.org/10.1177/23814683211039468" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/23814683211039468</a>
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Title
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Intergenerational Decision Making: The Role of Family Relationships in Medical Decision Making
Publisher
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MDM Policy & Practice
Date
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2021
Subject
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advance care planning; end of life; shared decision making; children with special health care needs; spillover effects
Creator
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Lin JL; Lipstein EA; Wittenberg E; Tay D; Lundstrom R; Lundstrom GL; Sediqzadah S; Wright DR
Description
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A symposium held at the 42nd annual Society for Medical Decision Making conference on October 26, 2020, focused on intergenerational decision making. The symposium covered existing research and clinical experiences using formal presentations and moderated discussion and was attended by 43 people. Presentations focused on the roles of pediatric patients in decision making, caregiver decision making for a child with complex medical needs, caregiver involvement in advanced care planning, and the inclusion of spillover effects in economic evaluations. The moderated discussion, summarized in this article, highlighted existing resources and gaps in intergenerational decision making in four areas: decision aids, economic evaluation, participant perspectives, and measures. Intergenerational decision making is an understudied and poorly understood aspect of medical decision making that requires particular attention as our society ages and technological advances provide new innovations for life-sustaining measures across all stages of the lifespan.
Identifier
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<a href="http://doi.org/10.1177/23814683211039468" target="_blank" rel="noreferrer noopener">10.1177/23814683211039468</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
Advance Care Planning
Children With Special Health Care Needs
End Of Life
January 2022 List
Lin JL
Lipstein EA
Lundstrom R
Lundstrom GL
MDM Policy & Practice
Sediqzadah S
shared decision making
spillover effects
Tay D
Wittenberg E
Wright DR
-
Dublin Core
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Title
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November 2021 List
Text
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November 2021 List
URL Address
<a href="http://doi.org/10.1177/00099228211047242" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/00099228211047242</a>
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Outpatient Follow-up Care After Hospital Discharge of Children With Complex Chronic Conditions at a Rural Tertiary Care Hospital
Publisher
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Clinical Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
follow-up; children with medical complexity; children with special health care needs; care coordination; children with complex chronic conditions; patient characteristics
Creator
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Brown A; Quaile M; Morris H; Tumin D; Parker CL; Warren L; Wall B; Crickmore K; Ledoux M; Eldridge DL; Aikman I
Description
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OBJECTIVE: To determine factors associated with completion of recommended outpatient follow-up visits in children with complex chronic conditions (CCCs) following hospital discharge. METHODS: We retrospectively identified children aged 1 to 17 years diagnosed with a CCC who were discharged from our rural tertiary care children's hospital between 2017 and 2018 with a diagnosis meeting published CCC criteria. Patients discharged from the neonatal intensive care unit and patients enrolled in a care coordination program for technology-dependent children were excluded. RESULTS: Of 113 eligible patients, 77 (68%) had outpatient follow-up consistent with discharge instructions. Intensive care unit (ICU) admission (P = .020) and prolonged length of stay (P = .004) were associated with decreased likelihood of completing recommended follow-up. CONCLUSIONS: Among children with CCCs who were not already enrolled in a care coordination program, ICU admission was associated with increased risk of not completing recommended outpatient follow-up. This population could be targeted for expanded care coordination efforts.
Identifier
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<a href="http://doi.org/10.1177/00099228211047242" target="_blank" rel="noreferrer noopener">10.1177/00099228211047242</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
Aikman I
Brown A
Care coordination
Children with complex chronic conditions
Children With Medical Complexity
Children With Special Health Care Needs
Clinical Pediatrics
Crickmore K
Eldridge DL
Follow-up
Ledoux M
Morris H
November 2021 List
Parker CL
patient characteristics
Quaile M
Tumin D
Wall B
Warren L
-
Dublin Core
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Title
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November 2020 List
Text
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Citation List Month
November 2020 List
URL Address
<a href="https://hosppeds.aappublications.org/content/early/2020/09/07/hpeds.2020-0062" target="_blank" rel="noreferrer noopener">https://hosppeds.aappublications.org/content/early/2020/09/07/hpeds.2020-0062 </a>
Dublin Core
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Title
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Caregiver Decisional Conflict Before and After Consultation About Gastrostomy Tube Placement
Publisher
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Hospital Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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caregivers; children with special health care needs; gastronomy tube; nutrition
Creator
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Nelson K E; Oppedisano S; Patel M L; Mahant S; Cohen E
Description
An account of the resource
OBJECTIVES: Families describe decision-making about gastrostomy tube (g-tube) placement as challenging. We measured caregiver decisional conflict before and after initial g-tube consultation to evaluate the potential benefit of a decision aid and feasibility in testing it. METHODS: Families presenting for initial consultation about g-tube placement completed the decisional conflict scale (DCS) at 1 or 2 of 3 time points: before consultation, after consultation, and after viewing a video. The decision support consultation was a 2-hour structured meeting with a pediatric hospitalist, nurse practitioner, and dietitian that was focused on clarifying the indication, feasibility, safety, and family values around tube placement. The video described decision-making and lived experiences of families with tube feeding. RESULTS: We measured the decisional conflict of 61 caregivers. Preconsultation decisional conflict scores were high (mean = 38.7), but there was substantial variation between families (SD = 19.4). Baseline scores did not vary between clinically relevant subgroups. Postconsultation DCS scores were lower (17.9 and SD = 13.5 for consult alone; 12.7 and SD = 13.2 for consult with video). Three caregivers (7.7%) of families had residual decisional conflict scores >37.5, the threshold conventionally associated with decision delay. CONCLUSIONS: Measuring decisional conflict among caregivers deciding about pediatric g-tube is feasible during the clinical encounter. Residual decisional conflict after our institution’s current decision support consultation model (with or without an additional video) was low, so development of an additional structured decision aid is not warranted. Further study of preconsult DCS variability across different clinical subgroups may help identify families benefiting from additional decisional support.
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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
Caregivers
Children With Special Health Care Needs
Cohen E
gastronomy tube
Hospital Pediatrics
Mahant S
Nelson K E
November 2020 List
Nutrition
Oppedisano S
Patel M L
-
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November 2020 List
Text
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Citation List Month
November 2020 List
URL Address
<a href="http://doi.org/10.1097/NJH.0000000000000685" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/NJH.0000000000000685</a>
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Title
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Palliative Care Knowledge and Characteristics in Caregivers of Chronically Ill Children
Publisher
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Journal of hospice and palliative nursing
Date
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2020
Subject
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children with special health care needs; complex chronic conditions; palliative care; pediatrics
Creator
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Johnston E E; Currie E R; Chen Y; Kent E E; Ornstein K A; Bhatia S; Dionne-Odom J N; Rosenberg A R
Description
An account of the resource
There is a growing population of children with complex chronic conditions (CCCs) whose caregivers would benefit from palliative care (PC). However, little is known about caregivers' PC awareness. We aimed to describe PC awareness among caregivers of children with CCCs and identify factors associated with lack of PC awareness. We used the National Cancer Institute's national Health Information National Trends Survey 2018 data to determine the percentage of caregivers of ill children who have PC awareness. After matching, caregiver PC awareness was compared with that of (1) the general survey population, (2) other caregivers, and (3) caregivers not caring for children. We used multivariable regression to determine factors associated with lack of PC awareness. Of 131 caregivers, 60% had "never heard of" PC. Caregivers of children were no more likely to have heard of PC than the general survey population (P = .76), noncaregivers (P = .97), or caregivers of nonchildren (P = .13). Caregivers younger than 40 years and without a college degree were less likely to have PC awareness than their peers. Most caregivers of ill children have no PC awareness, with no more PC awareness than the general population. Nurses caring for children with CCCs can help educate families and other health care team members about PC.
Identifier
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<a href="http://doi.org/10.1097/NJH.0000000000000685" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000685</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
Bhatia S
Chen Y
Children With Special Health Care Needs
Complex Chronic Conditions
Currie E R
Dionne-Odom J N
Johnston E E
Journal of Hospice and Palliative Nursing
Kent E E
November 2020 List
Ornstein K A
Palliative Care
Pediatrics
Rosenberg A R
-
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
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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>
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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
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
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>
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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
-
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
December 2017 List
URL Address
<a href="https://doi.org/10.1016/j.jpeds.2017.09.001" target="_blank" rel="noreferrer">https://doi.org/10.1016/j.jpeds.2017.09.001</a>
Notes
Copyright (c) 2017 Elsevier Inc. All rights reserved.
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Title
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Shared Decision Making among Children with Medical Complexity: Results from a Population-Based Survey.
Publisher
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The Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Children With Special Health Care Needs; Clinical Decision Support
Creator
An entity primarily responsible for making the resource
Lin Jody L; Cohen E; Sanders LM
Description
An account of the resource
OBJECTIVE: To compare the rates of shared decision making (SDM) reported by parents of children with medical complexity (CMC) with the rates of SDM reported by parents of noncomplex children with special health care needs (CSHCN). STUDY DESIGN: We examined the 2009-2010 National Survey of Children with Special Health Care Needs, a representative survey of 40 242 parents of CSHCN. CMC was defined as needing or using more medical care than usual, seeing 2 or more subspecialists, and positive response on at least 3 other items on the CSHCN screener. We identified 3 subgroups each of CMC and noncomplex CSHCN by sentinel diagnoses: asthma, seizures, and other diagnoses. SDM was defined as a binary composite variable, derived from 4 discrete items. We constructed 4 stepwise multivariable models to assess the relative odds of SDM, adjusted for sociodemographic characteristics (age, income, language, race, ethnicity, and marital status), behavioral comorbidity, family-centered care, and patient-centered medical home. RESULTS: The study population included 39 876 respondents. Compared with noncomplex CSHCN, CMC had a lower likelihood of SDM (aOR, 0.76; 95% CI, 0.64-0.91), which persisted in diagnostic subgroups: CMC with asthma (aOR, 0.67; 95% CI, 0.49-0.92) and CMC with other diagnoses (aOR, 0.74; 95% CI, 0.58-0.94), but not CMC with seizures (aOR, 0.95; 95% CI, 0.59-1.51). CONCLUSIONS: SDM is less common for CSHCN with complex needs than those without complex needs. Health system interventions targeting future-oriented care planning may improve SDM for CMC.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1016/j.jpeds.2017.09.001" target="_blank" rel="noreferrer">10.1016/j.jpeds.2017.09.001</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).
2017
Children With Special Health Care Needs
Clinical Decision Support
Cohen E
December 2017 List
Lin Jody L
Sanders LM
The Journal Of Pediatrics