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40
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Text
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1186/1472-6963-9-242" target="_blank" rel="noreferrer">http://doi.org/10.1186/1472-6963-9-242</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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Continuity of care for children with complex chronic health conditions: parents' perspectives
Publisher
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Bmc Health Services Research
Date
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2009
Subject
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Adolescent Transitions; Chronic Condition; Caregiver
Creator
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Miller AR; Condin CJ; McKellin WH; Shaw N; Klassen AF; Sheps S
Description
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BACKGROUND: Continuity of care has been explored largely from academic and service provider perspectives, and in relation to adult patient/client groups. We interviewed parents of children with complex chronic health conditions to examine how their experiences and perceptions of continuity of care fit with these perspectives; and to identify the salient factors in the experience of, and factors contributing to, continuity in this population. METHODS: Parents of 47 elementary school-aged children with spina bifida, Down syndrome, attention-deficit/hyperactivity disorder, Duchenne muscular dystrophy or cystic fibrosis participated in semi-structured interviews. Parents described and mapped the pattern of their interactions with service providers over time in all domains relevant to their child's health, well-being, and development (medical, rehabilitational, educational, and social supportive services), with particular attention paid to their perceptions of connectedness or coherency in these interactions. Verbatim transcripts were analyzed thematically using a framework approach to impose structure regarding parents' perspectives on continuity of care. RESULTS: Existing academic concepts of relational, informational and management continuity were all discernable in parents' narratives. A thorough knowledge of the child on the part of service providers emerged as extremely important to parents; such knowledge was underpinned by continuity of personal relationships, principally, and also by written information. For this population, notions of continuity extend to the full range of service providers these children and families need to achieve optimal health status, and are not limited to physicians and nurses. Communication among providers was seen as integral to perceived continuity. Compartmentalization of services and information led to parents assuming a necessary, though at times, uncomfortable, coordinating role. Geographic factors, institutional structures and practices, provider attitudes, and, on occasion, parent preferences and judgments, were all found to create barriers to "seamless" management and provision of care continuity across providers, settings, and sectors. CONCLUSIONS: These findings add new perspectives to the understanding of continuity within chronically ill children's health care. They are relevant to contemporary initiatives to improve continuity of services to children with special health care needs, demonstrate the need for parental support of their important role in maintaining continuity, and suggest avenues for further research.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/1472-6963-9-242" target="_blank" rel="noreferrer">10.1186/1472-6963-9-242</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
2009
Adolescent Transitions
Backlog
BMC Health Services Research
Caregiver
Chronic Condition
Condin CJ
Journal Article
Klassen AF
McKellin WH
Miller AR
Shaw N
Sheps S
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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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PedPalASCNet Member Publications
Subject
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A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.1080/09540120600581460" target="_blank" rel="noreferrer">http://doi.org/10.1080/09540120600581460</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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Growing up: Perspectives of children, families, and service providers regarding the needs of older children with perinatally-acquired HIV
Publisher
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AIDS Care
Date
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2006
Creator
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Fielden SJ; Scheckter L; Chapman GE; Alimenti A; Forbes JC; Sheps S; Cadell S; Frankish JC
Identifier
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<a href="http://doi.org/10.1080/09540120600581460" target="_blank" rel="noreferrer">10.1080/09540120600581460</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
Description
An account of the resource
2006
2006
AIDS care
Alimenti A
Backlog
Cadell S
Chapman GE
Fielden SJ
Forbes JC
Frankish JC
Journal Article
Scheckter L
Sheps S