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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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April 2022 List
Text
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Citation List Month
April 2022 List
URL Address
<a href="http://doi.org/10.1136/bmjopen-2019-034544" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjopen-2019-034544</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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Multimorbidity in Children and Youth Across the Life-course (MY LIFE): protocol of a Canadian prospective study
Publisher
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BMJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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adolescent; chronic disease; longitudinal study; mental disorder; multimorbidity; trajectories
Creator
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Ferro MA; Lipman EL; Lieshout RJV; Gorter JW; Shanahan L; Boyle M; Georgiades K; Timmons B
Description
An account of the resource
Introduction Multimorbidity, the co-occurrence of a chronic physical condition and mental disorder, affects a substantial number of children and youth and can lead to compromised quality of life, hardship for families, and an increased burden on the healthcare system. We are conducting a study to document the course of mental disorder in children and youth diagnosed with a chronic physical condition; identify predictors of child and youth multimorbidity; examine whether the effects of these predictors are moderated by relevant psychosocial and biological factors; explore potential inflammatory and stress biomarkers that mediate the onset of child and youth multimorbidity; and, assess whether multimorbidity in children and youth alters patterns of mental health service use. Methods and analysis Multimorbidity in Children and Youth Across the Life-course (MY LIFE) is a prospective study. Two hundred and fifty children and youth aged 2–16 years diagnosed with a chronic physical condition along with one parent will be recruited from the outpatient clinics at a paediatric tertiary care centre. Data will be collected using a multi-informant, multimethod design at four time-points (at recruitment, and at 6, 12 and 24 months postrecruitment). Parents will provide reports for all children/youth. In addition, youth ≥10 years will self-report. Mental disorder will be assessed using structured interviews. On completion of data collection, participant-reported data will be linked to provincial health records to identify mental health services use. Multilevel analyses (survival, proportional hazard, structural equation modelling) will be used to address MY LIFE objectives. Ethics and dissemination This study has been approved by the University of Waterloo Human Research Ethics Board and the Hamilton Integrated Research Ethics Board. Findings will be disseminated to key stakeholders using a number of outlets (peer-reviewed publications and conferences, lay informational pamphlets, social media).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjopen-2019-034544" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2019-034544</a>
2019
Adolescent
April 2022 List
Bmj Open
Boyle M
Chronic Disease
Ferro MA
Georgiades K
Gorter JW
Lieshout RJV
Lipman EL
longitudinal study
Mental Disorder
multimorbidity
Shanahan L
Timmons B
trajectories
-
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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Special Edition #1 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2020.10337" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamanetworkopen.2020.10337</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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Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity
Publisher
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JAMA Network Open
Date
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2020
Subject
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Preschool Child; Advance Care Planning; Bereavement; Caregivers; Child; Infant; Interviews as Topic; Male; Multimorbidity; Parents; Terminal Care
Creator
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Lord S; Moore C; Beatty M; Cohen E; Rapoport A; Hellmann J; Netten K; Amin R; Orkin J
Description
An account of the resource
Importance: Advance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course and timing of death; however, there is a paucity of literature that describes the experience of ACP from the perspective of bereaved family caregivers of CMC. Objective: To explore the experiences of bereaved family caregivers with ACP for CMC. Design, Setting, and Participants: This qualitative study included 12 interviews with 13 bereaved family caregivers of CMC whose deaths had occurred in the 5 years before study commencement (2013-2018). Participants were recruited at a single tertiary care pediatric center; CMC were treated by the Complex Care or Long-term Ventilation clinic in Toronto, Ontario, Canada. Data were collected from July to October 2018. Thematic analysis with an inductive approach was used. Exposures: Qualitative interviews were conducted using purposive sampling of bereaved family caregivers using semistructured interviews that were recorded and transcribed. Interviews were conducted until saturation was reached. Main Outcomes and Measures: Transcripts were analyzed to create themes that characterized caregiver experiences with ACP. Results: A total of 13 family caregivers were interviewed in 12 interviews, all of whom were parents (12 [92%] women, 1 [8%] man) of a deceased child (aged 7 months to 12 years). Themes were divided in the 3 following categories, which align with the Donabedian model for health service quality: (1) structure of care, (2) ACP process, and (3) end-of-life experience. Notable subthemes for this population included the importance of accounting for parental expertise in the child's care, recurrent experiences with life-threatening events, relative shock of the timing of death, and the multiple losses that caregivers experienced. Conclusions and Relevance: In this study, parental experiences revealed that there are key aspects of the structure of the child's care, process around ACP, and end-of-life care experiences that provide important reflections on ACP that warrant future study.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jamanetworkopen.2020.10337" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2020.10337</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
2022 Special Edition 1 - Parent Perspectives
Advance Care Planning
Amin R
Beatty M
Bereavement
Caregivers
Child
Cohen E
Hellmann J
Infant
Interviews As Topic
JAMA Network Open
Lord S
Male
Moore C
multimorbidity
Netten K
Orkin J
Parents
Preschool Child
Rapoport A
Terminal Care
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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
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
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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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
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chronic disease; Case management; child health services; healthcare disparities; hospice and palliative care nursing; multimorbidity; pediatric nursing; socioeconomic factors
Creator
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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>
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
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