1
40
12
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Dublin Core
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Title
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1111/ajr.12958" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/ajr.12958</a>
Dublin Core
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Title
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Fifteen years of shared care for paediatric oncology, haematology and palliative patients across Queensland: The role of Regional Case Managers
Publisher
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Australian Journal of Rural Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Child; Hospitals; Neoplasms/th [Therapy]; Case Management; Neoplasms; Queensland; Case Managers; Hematology
Creator
An entity primarily responsible for making the resource
Slater P; Hastings Y; Nicholson J; Noyes M; Benitez L; Pollock K; Peacock R; Cox A; Gunning R; Caris K; Petersen D; Henry C; Spanner R; Beckett K; Chisholm C
Description
An account of the resource
Objective: A shared care model was implemented in 2006 in Queensland to facilitate paediatric oncology, haematology and palliative care patients receiving care as close to home as possible. Following initial diagnosis, care planning and treatment at the tertiary children's hospital, appropriate local care was coordinated by Regional Case Managers (RCMs) established at each of 10 Shared Care Units (SCUs). This enabled safe and quality regional care supported by a statewide network providing clinical governance and education. This paper examines learnings from 15 years of this shared care.
Setting: Ten hospitals throughout Queensland facilitated a statewide model of shared care for paediatric oncology, haematology and palliative care patients, supported by a tertiary hub in Brisbane.
Participants: Regional Case Managers in Shared Care Units and their supporting staff.
Design: Staff from SCUs were surveyed and focus group interviews conducted.
Results: The paper reviews the attributes, knowledge and experience required for RCMs. Standards of care were supported through education workshops, clinical placements, chemotherapy credentialing, guidelines and standards. RCMs facilitated communication and information sharing with the tertiary centre, advocated for their cohort of patients locally and streamlined and supported the family's experience of care.
Conclusion: The RCM role provided invaluable clinical leadership for the care of paediatric oncology, haematology and palliative patients across Queensland. As new treatments evolve, the expertise and coordination provided by the RCMs will be even more critical. Achieving high-quality shared care outcomes is underpinned by the RCMs drive to achieve statewide safety and support for this cohort of children.
Identifier
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<a href="http://doi.org/10.1111/ajr.12958" target="_blank" rel="noreferrer noopener">10.1111/ajr.12958</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
2023 SE5 - Low Resource Setting
Australian Journal of Rural Health
Beckett K
Benitez L
Caris K
Case Management
Case Managers
Child
Chisholm C
Cox A
Gunning R
Hastings Y
Hematology
Henry C
Hospitals
Humans
Neoplasms
Neoplasms/th [therapy]
Nicholson J
Noyes M
Peacock R
Petersen D
Pollock K
Queensland
Slater P
Spanner 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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December 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
December 2021 List
URL Address
<a href="http://doi.org/10.12968/ijpn.2021.27.8.386" target="_blank" rel="noreferrer noopener">http://doi.org/10.12968/ijpn.2021.27.8.386</a>
Dublin Core
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Title
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Creating a safe space': how perinatal palliative care coordinators navigate care and support for families
Publisher
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International Journal of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Care coordinator; Case Management; Curriculum; Delivery of Health Care; Family; Fetal diagnosis; Grief; Newborn Infant; Palliative Care; Perinatal Care; Perinatal palliative care; Pregnancy; Qualitative Research
Creator
An entity primarily responsible for making the resource
Côté-Arsenault D; Denney-Koelsch E; Elliott G
Description
An account of the resource
BACKGROUND: Families who learn that their unborn baby has a life-limiting fetal condition are often overwhelmed by this news, alongside navigating an unfamiliar healthcare system. A skilled perinatal palliative care coordinator (PPCC) can help these families, yet little is known about their function and roles. AIMS: This study sought to describe the PPCC's approach to care, their guiding principles and the roles, knowledge and skills that enable them to provide exemplary care. METHODS: This qualitative descriptive study included interviews of 12 expert PPCCs. Directed content analysis was used to identify major codes. Iterative analysis led to theme identification. FINDINGS: Findings include the PPCC's position within the healthcare system, guiding principles, goals, roles and responsibilities, and knowledge and skills. Two figures enhance the understanding of the PPCCs approach to creating a safe space for the family, supporting the interdisciplinary team and facilitating coordinated birth planning. CONCLUSIONS: Every perinatal palliative care programme should include a PPCC. Future research on clinical training could examine the effectiveness of an educational intervention, using the detailed knowledge and skills learned in this study as a curriculum.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2021.27.8.386" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.8.386</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
Care coordinator
Case Management
Côté-Arsenault D
Curriculum
December 2021 List
Delivery of Health Care
Denney-Koelsch E
Elliott G
Family
Fetal Diagnosis
Grief
International Journal of Palliative Nursing
Newborn Infant
Palliative Care
Perinatal Care
Perinatal Palliative Care
Pregnancy
Qualitative Research
-
Dublin Core
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Title
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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/10.1111/jnu.12499" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jnu.12499</a>
Dublin Core
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Title
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Socioeconomic Status and Health Services Utilization for Children With Complex Chronic Conditions Liable to Receive Nurse-Led Services: A Cross-Sectional Study
Publisher
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Journal of Nursing Scholarship
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
chronic disease; Case management; child health services; healthcare disparities; hospice and palliative care nursing; multimorbidity; pediatric nursing; socioeconomic factors
Creator
An entity primarily responsible for making the resource
Perez-Ardanaz B; Morales-Asencio JM; Garcia-Pinero JM; Lupianez-Perez I; Morales-Gil IM; Kaknani-Uttumchandani S
Description
An account of the resource
AIM: To analyze the use of health services for children with severe chronic diseases, seeking to identify patterns of use according to sociodemographic and clinical conditions, and to identify unmet needs of care coordination that could benefit from nursing case management services. DESIGN: Cross-sectional study. METHODS: Children treated in ambulatory and hospital care in Granada, Spain, with complex chronic diseases in 2016 were analyzed to determine their use of healthcare resources. Socioeconomic variables were evaluated, along with clinical status and duration of their conditions. RESULTS: In total, 265 children were analyzed (mean age 7.3 years, SD 4.63; 56.6% male). The average duration of the disease was 63.26 months (SD 54.09). The most common types of disease were neurological (35.80%), congenital (23.90%), and oncological (18.90%). Multivariate analysis showed that children in need of advanced care (beta = 0.71), with a relatively recent diagnosis (beta = -0.11), with criteria for palliative care 1 (beta = -0.26), and whose mothers were older (beta = 0.36) and had a higher educational level (beta = 0.19) made greater use of healthcare resources during the preceding 12 months, whether urgent or scheduled (r(2) = 78.0%, p < .001). CONCLUSIONS: Children with higher needs for advanced care have a heterogeneous use of healthcare resources depending on certain clinical and sociodemographic determinants. This finding highlights the importance of the identification of profiles of children and families for care coordination. The presence of sociodemographic determinants may need individualized approaches to assure a timely health care utilization. CLINICAL RELEVANCE: A significant proportion of the children used multiple health services, being treated at several centers simultaneously, and producing up to 139 total yearly contacts with the health system. Policymakers, healthcare providers, and patients' families should engage in a redesign of healthcare services for these children, providing comprehensive and coordinated systems of care for this population.
Identifier
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<a href="http://doi.org/10.1111/jnu.12499" target="_blank" rel="noreferrer noopener">10.1111/jnu.12499</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
Case Management
Child Health Services
Chronic Disease
Garcia-Pinero JM
Healthcare Disparities
Hospice And Palliative Care Nursing
Journal Of Nursing Scholarship
Kaknani-Uttumchandani S
Lupianez-Perez I
Morales-Asencio JM
Morales-Gil IM
multimorbidity
Pediatric Nursing
Perez-Ardanaz B
September 2019 List
Socioeconomic Factors
-
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
Backlog
URL Address
<a href="http://doi.org/10.1016/j.cgh.2009.09.010" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.cgh.2009.09.010</a>
Dublin Core
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Title
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Severe gastroparesis: medical therapy or gastric electrical stimulation
Publisher
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Clinical Gastroenterology And Hepatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Humans; Case Management; Electric Stimulation/methods; Gastroparesis/drug therapy/therapy
Creator
An entity primarily responsible for making the resource
Reddymasu SC; Sarosiek I; McCallum RW
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.cgh.2009.09.010" target="_blank" rel="noreferrer">10.1016/j.cgh.2009.09.010</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).
Type
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Journal Article
Description
An account of the resource
2010
2010
Backlog
Case Management
Clinical Gastroenterology And Hepatology
Electric Stimulation/methods
Gastroparesis/drug therapy/therapy
Humans
Journal Article
McCallum RW
Reddymasu SC
Sarosiek I
-
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
Backlog
URL Address
<a href="http://doi.org/10.1089/jpm.2007.0105" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2007.0105</a>
Dublin Core
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Title
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Determinants of do-not-resuscitate orders in palliative home care.
Publisher
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Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Female; Humans; Male; Pain Measurement; Adult; Canada; Aged; Middle Aged; Activities of Daily Living; Demography; Case Management; adolescent; 80 and over; retrospective studies; DNAR; Resuscitation Orders; Neuropsychological Tests; Pain/di [Diagnosis]; Advance Directives/sn [Statistics & Numerical Data]; Critical Illness/mo [Mortality]; Critical Illness/th [Therapy]; Palliative Care/sn [Statistics & Numerical Data]; Cognition Disorders/di [Diagnosis]; Cognition Disorders/ep [Epidemiology]; Palliative Care/lj [Legislation & Jurisprudence]
Creator
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Brink P; Smith TF; Kitson M
Description
An account of the resource
OVERVIEW: Do-not-resuscitate (DNR) orders allow home care clients to communicate their own wishes over medical treatment decisions, helping to preserve their dignity and autonomy. To date, little is known about DNR orders in palliative home care. Basic research to identify rates of completion and determinants of DNR orders has yet to be examined in palliative home care., PURPOSE: The purpose of this exploratory study was to determine who in palliative home care has a DNR order as part of their advance directive., METHODS: Information on health was collected using the interRAI instrument for palliative care (interRAI PC). The sample included 470 home care clients from one community care access centre in Ontario., RESULTS: This study indicated that a preference to die at home (odds ratio [OR]: 8.29, confidence interval [CI]: 4.55-15.11); close proximity to death (OR: 0.99, CI: 0.99-1.00); daily incontinence (OR: 2.74, CI: 1.05-7.16); and sleep problems (OR: 1.85, CI: 1.02-3.37) are associated with DNR orders. In addition, clients who are more accepting of their situation are 5.67 times (CI: 1.67-19.27) more likely to have a DNR in place., CONCLUSION: This study represents an important first step to identifying issues related to DNR orders. In addition to proximity to death, incontinence, and sleep problems, acceptance of one's own situation and a preference to die at home are important determinants of DNR completion. The results imply that these discussions might often depend not only on the health of the clients but also on the clients' acceptance of their current situation and where they wish to die.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2007.0105" target="_blank" rel="noreferrer">10.1089/jpm.2007.0105</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).
Type
The nature or genre of the resource
Journal Article
2008
80 And Over
Activities of Daily Living
Adolescent
Adult
Advance Directives/sn [Statistics & Numerical Data]
Aged
Backlog
Brink P
Canada
Case Management
Cognition Disorders/di [Diagnosis]
Cognition Disorders/ep [Epidemiology]
Critical Illness/mo [Mortality]
Critical Illness/th [therapy]
Demography
DNAR
Female
Humans
Journal Article
Journal of Palliative Medicine
Kitson M
Male
Middle Aged
Neuropsychological Tests
Pain Measurement
Pain/di [diagnosis]
Palliative Care/lj [Legislation & Jurisprudence]
Palliative Care/sn [Statistics & Numerical Data]
Resuscitation Orders
Retrospective Studies
Smith TF
-
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
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2004-0458" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2004-0458</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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Addressing transition to adult health care for adolescents with special health care needs
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Cross-Sectional Studies; Female; Humans; Male; Questionnaires; Professional-Family Relations; Health Services Needs and Demand; Socioeconomic Factors; Sampling Studies; Family Characteristics; Case Management; Aging; adolescent; Parents/psychology; Health Surveys; United States/epidemiology; Continuity of Patient Care/organization & administration; poverty; Chronic Disease/epidemiology/therapy; African Americans/statistics & numerical data; European Continental Ancestry Group/statistics & numerical data; Hispanic Americans/sn [Statistics & Numerical Data]; Insurance Coverage/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Scal P; Ireland M
Description
An account of the resource
OBJECTIVE: To determine the factors associated with addressing the transition from pediatric to adult-oriented health care among US adolescents with special health care needs. METHODS: Data for 4332 adolescents, 14 to 17 years of age, from the 2000-2001 National Survey of Children With Special Health Care Needs were used. The adequacy of transition services was determined by parent self-report. Explanatory variables, including parental education, family poverty status, race/ethnicity, measures of the severity and complexity of conditions, health insurance status, having a personal doctor, and the quality of the parent's relationship with the adolescent's doctor, were entered into a regression model. RESULTS: Overall, 50.2% of parents reported that they had discussed transition issues with their adolescent's doctor and 16.4% had discussed and developed a plan for addressing those needs. In a multivariate regression analysis, correlates of the adequacy of transition services included older age, female gender, complexity of health care needs, and higher quality of the parent-doctor relationship. CONCLUSIONS: Among adolescents with special health care needs, those who were older and those with more complicated needs were more likely to have addressed the transition from a pediatric to adult-oriented system of care. Furthermore, this analysis demonstrated a strong association between a high-quality parent-provider relationship and the extent to which transition issues were addressed. The importance of transition services for adolescents with less complex needs and the overall impact of health care transition services were not assessed in this study and remain important questions for future investigations.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2004-0458" target="_blank" rel="noreferrer">10.1542/peds.2004-0458</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).
Type
The nature or genre of the resource
Journal Article
2005
Adolescent
African Americans/statistics & numerical data
Aging
Backlog
Case Management
Chronic Disease/epidemiology/therapy
Continuity Of Patient Care/organization & Administration
Cross-sectional Studies
European Continental Ancestry Group/statistics & numerical data
Family Characteristics
Female
Health Services Needs And Demand
Health Surveys
Hispanic Americans/sn [Statistics & Numerical Data]
Humans
Insurance Coverage/statistics & numerical data
Ireland M
Journal Article
Male
Parents/psychology
Pediatrics
Poverty
Professional-family Relations
Questionnaires
Sampling Studies
Scal P
Socioeconomic Factors
United States/epidemiology
-
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
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2004-1262" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2004-1262</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
Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Child; Female; Humans; Male; Questionnaires; Socioeconomic Factors; California; Sampling Studies; Family Characteristics; Case Management; Aging; adolescent; Adolescent Transitions; Health Surveys; Continuity of Patient Care/organization & administration; Needs Assessment/statistics & numerical data; Health Services Needs and Demand/trends; African Americans/statistics & numerical data; European Continental Ancestry Group/statistics & numerical data; Hispanic Americans/sn [Statistics & Numerical Data]; Insurance Coverage/statistics & numerical data; Exceptional
Creator
An entity primarily responsible for making the resource
Lotstein DS; McPherson M; Strickland B; Newacheck P
Description
An account of the resource
OBJECTIVE: To describe the proportion of youth with special health care needs (YSHCN) who are receiving services for medical transitions and to describe which sociodemographic and health care-related factors are associated with receiving transition services. METHODS: We analyzed responses to questions about medical transitions from the 2001 National Survey of Children With Special Health Care Needs (NS-CSHCN). Parents or guardians of youth aged 13 to 17 years who screened positive for the survey were asked (1) whether they had discussed with health care providers how their child's health care needs might change in adulthood, (2) if they had a plan to address these changing needs, and (3) if their child's health care providers had discussed having their child eventually see a doctor who treats adults. Bivariate and multivariate associations were estimated to identify sociodemographic and health care factors related to receiving medical-transition services. RESULTS: Overall, 50% of respondents had discussed their child's changing health care needs with their physicians, although significantly fewer Hispanic youth compared with other youth reported these discussions. Youth who met criteria for a medical home were more likely to have discussed changing needs and to have a plan addressing these needs. Of those who had discussed changing needs, 59% had a plan to address these needs and approximately 42% had reported discussing shifting care to adult-oriented providers. Younger teens and non-Hispanic black children were less likely to have discussed changing providers. Fifteen percent of YSHCN met the Maternal and Child Health Bureau's core outcome for medical transitions. A multivariate logistic-regression model found that older age and having a medical home were significantly associated with increased odds of meeting the outcome measure. CONCLUSION: The proportion of YSHCN meeting the medical-transition outcome measure is quite low, particularly for youth from ethnic minorities. Higher rates are seen for older teens and those receiving care within a medical home. Significant efforts will be required to meet the proposed goal of all YSHCN receiving the services necessary to transition to adult health care.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2004-1262" target="_blank" rel="noreferrer">10.1542/peds.2004-1262</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).
Type
The nature or genre of the resource
Journal Article
2005
Adolescent
Adolescent Transitions
African Americans/statistics & numerical data
Aging
Backlog
California
Case Management
Child
Continuity Of Patient Care/organization & Administration
European Continental Ancestry Group/statistics & numerical data
Exceptional
Family Characteristics
Female
Health Services Needs and Demand/trends
Health Surveys
Hispanic Americans/sn [Statistics & Numerical Data]
Humans
Insurance Coverage/statistics & numerical data
Journal Article
Lotstein DS
Male
McPherson M
Needs Assessment/statistics & numerical data
Newacheck P
Pediatrics
Questionnaires
Sampling Studies
Socioeconomic Factors
Strickland B
-
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
February 2018 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
February 2018 List
URL Address
<a href="http://doi.org/10.1177/1049909117695068" target="_blank" rel="noreferrer">http://doi.org/10.1177/1049909117695068</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
Aspects and intensity of pediatric palliative case management provided by a hospital-based case management team: A comparative study between children with malignant and nonmalignant disease
Publisher
An entity responsible for making the resource available
American Journal Of Hospice & Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
2018; Case Management; Child; end-of-life care; Hospitals; Only Child; Palliative Care; palliative care team; Pediatrics; retrospective studies; Teams
Creator
An entity primarily responsible for making the resource
Jagt-van Kampen CT; Colenbrander Derk A; Bosman DK; Grootenhuis MA; Kars Marijke C; Schouten-van Meeteren; Antoinette YN
Description
An account of the resource
Objectives: Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children�s university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for children with life-shortening disease. The aim of this report is to gain insight in the first 9 months of this PPCT. Methods: Aspects of care during the first 9 months of the PPCT are presented, and comparison is made between patients with malignant disease (MD) and nonmalignant disease (NMD) in a retrospective study design. Insight in the aspects of care of all patients with a life-shortening disease was retrieved from web-based files and the hour registrations from the PPCT. Results: Forty-three children were supported by the PPCT during the first 9 months: 22 with MD with a median of 50 (1-267) days and 29 minutes (4-615) of case management per patient per day and 21 patients with NMD with a median of 79.5 (5-211) days and 16 minutes of case management per day (6-64). Our data show significantly more interprofessional contacts for patients with MD and more in-hospital contacts for patients with NMD. The median number of admission days per patient was 11 (0-22) for MD (44% for anticancer therapy) and 44 (0-303) for NMD (36% for infectious diseases). Significance of Results: This overview of aspects of pediatric palliative case management shows shorter but more intensive case management for MD in comparison with NMD. This insight in palliative case management guides the design of a PPCT. (PsycINFO Database Record (c) 2017 APA, all rights reserved)
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909117695068" target="_blank" rel="noreferrer">10.1177/1049909117695068</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).
2018
American Journal of Hospice & Palliative Medicine
Antoinette YN
Bosman DK
Case Management
Child
Colenbrander Derk A
End-of-life Care
February 2018 List
Grootenhuis MA
Hospitals
Jagt-van Kampen CT
Kars Marijke C
Only Child
Palliative Care
Palliative Care Team
Pediatrics
Retrospective Studies
Schouten-van Meeteren
Teams
-
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
January 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1177/0269216317692682" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216317692682</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 with a paediatric palliative care team: A qualitative study
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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case management; palliative therapy; Pediatrics; qualitative research; Child; Clinical Article; concrete; coordination; expectation; Female; Human; Interview; Male; thematic analysis
Creator
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Verberne LM; Schouten-van Meeteren AYN; Bosman DK; Colenbrander DA; Jagt CT; Grootenhuis MA; van Delden JJM; Kars MC
Description
An account of the resource
Background: Parents of children with a life-limiting disease have to rely on themselves at home while adequate paediatric palliative care is lacking. In several countries, paediatric palliative care teams are introduced to ensure continuity and quality of care and to support the child and the family. Yet, little is known about how parents experience such multidisciplinary teams. Aim: To obtain insight into the support provided by a new paediatric palliative care team from the parents' perspective. Design: An interpretative qualitative interview study using thematic analysis was performed. Setting/participants: A total of 47 single or repeated interviews were undertaken with 42 parents of 24 children supported by a multidisciplinary paediatric palliative care team located at a university children's hospital. The children suffered from malignant or non-malignant diseases. Results: In advance, parents had limited expectations of the paediatric palliative care team. Some had difficulty accepting the need for palliative care for their child. Once parents experienced what the team achieved for their child and family, they valued the team's involvement. Valuable elements were as follows: (1) process-related aspects such as continuity, coordination of care, and providing one reliable point of contact; (2) practical support; and (3) the team members' sensitive and reliable attitude. As a point of improvement, parents suggested more concrete clarification upfront of the content of the team's support. Conclusion: Parents feel supported by the paediatric palliative care team. The three elements valued by parents probably form the structure that underlies quality of paediatric palliative care. New teams should cover these three valuable elements.
Identifier
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<a href="http://doi.org/10.1177/0269216317692682" target="_blank" rel="noreferrer">10.1177/0269216317692682</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).
2017
Bosman DK
Case Management
Child
Clinical Article
Colenbrander DA
concrete
Coordination
Expectation
Female
Grootenhuis MA
Human
Interview
Jagt CT
January 2018 List
Kars MC
Male
Palliative Medicine
Palliative Therapy
Pediatrics
Qualitative Research
Schouten-Van Meeteren AYN
Thematic Analysis
van Delden JJM
Verberne LM
-
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
March 2017 List
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 Prospective Study On The Characteristics And Subjects Of Pediatric Palliative Care Case Management Provided By A Hospital Based Palliative Care Team
Publisher
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Bmc Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Case Management; Hospital; Palliative Therapy; Prospective Study; Child; Clergy; Controlled Study; Human; Major Clinical Study; Nurse; Psychologist; Questionnaire; Social Worker
Creator
An entity primarily responsible for making the resource
Jagt Van Kampen CT; Kars MC; Colenbrander DA; Bosman DK; Grootenhuis MA; Caron HN; Schouten-Van Meeteren AYN
Description
An account of the resource
Background: Case management is a subject of interest within pediatric palliative care. Detailed descriptions of the content of this type of case management are lacking. We aim to describe the contents of care provided, utilization of different disciplines, and times of usage of a pediatric palliative care case management program compared for patients with malignant disease (MD) and non-malignant disease (NMD). Methods: A three-month prospective study, with questionnaires filled in by members of a pediatric palliative care team (PPCT) for each contact with parents. Results: Four hundred fifty-five contacts took place with parents of 70 patients (27MD, 43NMD). Sixty-two percent of all contacts were with the specialized nurse. The child life specialists, psychologist and social worker were also regularly consulted, the chaplain was not consulted. Ninety-five percent of all contacts took place between 8 am and 6 pm during weekdays, a limited number between 6 pm and 9 pm. Twenty-five percent of all contacts were proactively initiated by the PPCT, 25 % were initiated by parents. In these care characteristics, no differences were seen for MD and NMD patients. Psychosocial topics were addressed most frequently. MD patients consulted the PPCT more often about school and NMD patients about socio-economic issues. Conclusions: All different disciplines of the PPCT were regularly consulted, except for the chaplain. With an easy accessible team with a highly pro-active approach, availability from 8 am to 9 pm seems sufficient to accommodate patient's and parent's needs. More anticipation seems required for socio-economic topics. This insight in pediatric palliative case management can provide guidance in the development of a new PPCT. Copyright © 2016 The Author(s).
Identifier
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10.1186/s12904-016-0166-8
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).
2017
BMC Palliative Care
Bosman DK
Caron HN
Case Management
Child
Clergy
Colenbrander DA
Controlled Study
Grootenhuis MA
Hospital
Human
Jagt Van Kampen CT
Kars MC
Major Clinical Study
March 2017 List
Nurse
Palliative Therapy
Prospective Study
Psychologist
Questionnaire
Schouten-Van Meeteren AYN
Social Worker
-
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 2017 List
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
Aspects And Intensity Of Pediatric Palliative Case Management Provided By A Hospital-based Case Management Team
Publisher
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American Journal Of Hospice And Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Case Management; Child; End-of-life Care; Only Child; Palliative Care; Palliative Care Team; Pediatrics; Retrospective Studies
Creator
An entity primarily responsible for making the resource
Jagt Van Kampen CT; Colenbrander DA; Bosman DK; Grootenhuis MA; Kars MC; Schouten-Van Meeteren AYN
Description
An account of the resource
OBJECTIVES: Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children's university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for children with life-shortening disease. The aim of this report is to gain insight in the first 9 months of this PPCT. METHODS: Aspects of care during the first 9 months of the PPCT are presented, and comparison is made between patients with malignant disease (MD) and nonmalignant disease (NMD) in a retrospective study design. Insight in the aspects of care of all patients with a life-shortening disease was retrieved from web-based files and the hour registrations from the PPCT. RESULTS: Forty-three children were supported by the PPCT during the first 9 months: 22 with MD with a median of 50 (1-267) days and 29 minutes (4-615) of case management per patient per day and 21 patients with NMD with a median of 79.5 (5-211) days and 16 minutes of case management per day (6-64). Our data show significantly more interprofessional contacts for patients with MD and more in-hospital contacts for patients with NMD. The median number of admission days per patient was 11 (0-22) for MD (44% for anticancer therapy) and 44 (0-303) for NMD (36% for infectious diseases). SIGNIFICANCE OF RESULTS: This overview of aspects of pediatric palliative case management shows shorter but more intensive case management for MD in comparison with NMD. This insight in palliative case management guides the design of a PPCT.
Identifier
An unambiguous reference to the resource within a given context
10.1177/1049909117695068
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).
2017
American Journal of Hospice and Palliative Medicine
Bosman DK
Case Management
Child
Colenbrander DA
End-of-life Care
Grootenhuis MA
Jagt Van Kampen CT
Kars MC
May 2017 List
Only Child
Palliative Care
Palliative Care Team
Pediatrics
Retrospective Studies
Schouten-Van Meeteren AYN
-
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 2017 List
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
Comparative Effectiveness of Usual Source of Care Approaches to Improve End-of-life Outcomes for Children with Intellectual Disability
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
2017
Subject
The topic of the resource
Case Management; Comparative Effectiveness; Emergency Room Utilization; Hospital Readmissions; Intellectual Disability; Pediatric Hospice Care; Usual Source Of Care
Creator
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Lindley LC; Cozad MJ
Description
An account of the resource
CONTEXT: Children with intellectual disability (ID) are at risk for adverse end-of-life outcomes including high emergency room utilization and hospital readmissions, along with low hospice enrollment. OBJECTIVES: The objective of this study was to compare the effectiveness of usual source of care approaches to improve end-of-life outcomes for children with ID. METHODS: We used longitudinal California Medicaid claims data. We included children who were less than 21 years with fee-for-service Medicaid claims, died between January 1, 2007 and December 31, 2010, and had a moderate to profound ID diagnosis. End-of-life outcomes (i.e., hospice enrollment, emergency room utilization, hospital readmissions) were measured via claims data. Our treatments were usual source of care (USC) only versus usual source of care plus targeted case management (USC plus TCM). Using instrumental variable analysis, we compared the effectiveness of treatments on end-of-life outcomes. RESULTS: Ten percent of children with ID enrolled in hospice, 73% utilized the emergency room, and 20% had 3 or more hospital admissions in their last year of life. USC plus TCM relative to USC only had no effect on hospice enrollment; however, it significantly reduced the probability of emergency room utilization (B=-1.29, p<0.05) and hospital readmissions (B=-1.71, p<0.001). CONCLUSIONS: Our findings demonstrated that USC plus TCM was more effective at improving end-of-life outcomes for children with ID. Further study of the extent of UCS and TCM involvement in reducing emergency room utilization and hospital readmissions at end of life is needed.
Identifier
An unambiguous reference to the resource within a given context
10.1016/j.jpainsymman.2017.06.007
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).
2017
Case Management
Comparative Effectiveness
Cozad MJ
Emergency Room Utilization
Hospital Readmissions
Intellectual Disability
Journal Of Pain & Symptom Management
Lindley LC
October 2017 List
Pediatric Hospice Care
Usual Source Of Care