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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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March 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
March 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.01.007" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.01.007</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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Prioritization of Pediatric Palliative Care Field-Advancement Activities in the United States: Results of a National Survey
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
2021
Subject
The topic of the resource
pediatric; palliative care; funding; curriculum; quality of health care; financing
Creator
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Feudtner C; Faerber JA; Rosenberg AR; Kobler K; Baker JN; Bowman BA; Wolfe J; Friebert S
Description
An account of the resource
BACKGROUND: The field of pediatric palliative care (PPC) continues to encounter challenges and opportunities to improving access to high-quality PPC services. In early 2019, a workshop identified eleven potential "next step" actions, and subsequently a national survey-based poll of members of the PPC community was conducted to prioritize these potential actions in terms of their "actionable importance." METHODS: Invitations to the survey were distributed in October 2019 to interdisciplinary PPC health care professionals via email to two major listservs, one hosted by the Section of Hospice and Palliative Medicine of the American Academy of Pediatrics, the other by the Center to Advance Palliative Care. Respondents rated the "actionable importance" of items relative to each other via a discrete choice experiment. Median importance scores are reported for each item. RESULTS: 177 individuals responded to the survey. The majority (62.2%) were physicians, with nurses (16.4%), advanced practice nurses (7.9%), and social workers (7.3%) being the other most common responders. The top 5 potential actions, in descending rank order, were: Determine what parents value regarding PPC (median score of 17.8, out of a total score of all items of 100); Define and disseminate core primary PPC curriculum (median, 15.3); Develop PPC national representation strategy and tactics (median, 12.3); Create PPC-specific program development toolkit (median, 10.9); and, Analyze payment and financing ratios (median, 9.6). CONCLUSIONS: Those seeking to advance the field of PPC should take into account the findings from this study, which suggest that certain actions are more likely to have a beneficial impact on moving the field forward.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2021.01.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.01.007</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).
2021
Baker JN
Bowman BA
Curriculum
Faerber JA
Feudtner C
Financing
Friebert S
Funding
Journal of Pain and Symptom Management
Kobler K
March 2021 List
Palliative Care
Pediatric
Quality Of Health Care
Rosenberg AR
Wolfe J
-
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/10.1001/jamapediatrics.2014.2341" target="_blank" rel="noreferrer">http://doi.org/10.1001/jamapediatrics.2014.2341</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
Good-parent beliefs of parents of seriously ill children
Publisher
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Jama Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
adolescent; Child; Cross-Sectional Studies; Female; Humans; infant; Male; Parent-Child Relations; Parents; Questionnaires; Chronic disease; Child welfare; Acute Disease; Stress; Practice; Preschool; Adaptation; Psychological; Attitudes; Newborn; Health Knowledge; Philadelphia
Creator
An entity primarily responsible for making the resource
Feudtner C; Walter JK; Faerber JA; Hill DL; Carroll KW; Mollen CJ; Miller VA; Morrison WE; Munson DA; Kang T; Hinds PS
Description
An account of the resource
IMPORTANCE: Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. OBJECTIVE: To assess parents' perceptions regarding the relative importance of 12 good-parent attributes. DESIGN, SETTING, AND PARTICIPANTS: A cross-sectional, discrete-choice experiment was conducted at a children's hospital. Participants included 200 parents of children with serious illness. MAIN OUTCOMES AND MEASURES: Ratings of 12 good-parent attributes, with subsequent use of latent class analysis to identify groups of parents with similar ratings of attributes, and ascertainment of whether membership in a particular group was associated with demographic or clinical characteristics. RESULTS: The highest-ranked good-parent attribute was making sure that my child feels loved, followed by focusing on my child's health, making informed medical care decisions, and advocating for my child with medical staff. We identified 4 groups of parents with similar patterns of good-parent-attribute ratings, which we labeled as: child feels loved (n=68), child's health (n=56), advocacy and informed (n=55), and spiritual well-being (n=21). Compared with the other groups, the child's health group reported more financial difficulties, was less educated, and had a higher proportion of children with new complex, chronic conditions. CONCLUSIONS AND RELEVANCE: Parents endorse a broad range of beliefs that represent what they perceive they should do to be a good parent for their seriously ill child. Common patterns of how parents prioritize these attributes exist, suggesting future research to better understand the origins and development of good-parent beliefs among these parents. More important, engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support.
2015-01
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jamapediatrics.2014.2341" target="_blank" rel="noreferrer">10.1001/jamapediatrics.2014.2341</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
2015
Acute Disease
Adaptation
Adolescent
Attitudes
Backlog
Carroll KW
Child
Child welfare
Chronic Disease
Cross-sectional Studies
Faerber JA
Female
Feudtner C
Health Knowledge
Hill DL
Hinds PS
Humans
Infant
JAMA Pediatrics
Journal Article
Kang T
Male
Miller VA
Mollen CJ
Morrison WE
Munson DA
Newborn
Parent-child Relations
Parents
Philadelphia
Practice
Preschool
Psychological
Questionnaires
Stress
Walter JK
-
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.jpainsymman.2012.03.007" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2012.03.007</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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Putting on a happy face: emotional expression in parents of children with serious illness
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Parent caregivers
Creator
An entity primarily responsible for making the resource
Hexem KR; Miller VA; Carroll KW; Faerber JA; Feudtner C
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2012.03.007" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2012.03.007</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
CONTEXT: Communication is widely acknowledged as a crucial component of high-quality pediatric medical care, which is provided in situations in which parents typically experience strong emotions. OBJECTIVES: To explore emotion using the Linguistic Inquiry and Word Count (LIWC) and a self-report questionnaire to better understand the relationship between these two measures of emotion in a pediatric care context. METHODS: Sixty-nine parents of 47 children who were participants in the Decision Making in Pediatric Palliative Care Study at The Children's Hospital of Philadelphia took part in this study. Parents completed the Positive and Negative Affect Schedule (PANAS) and a semistructured interview about their children and experience with medical decision making. The transcribed interviews were analyzed with the LIWC program, which yields scores for positive and negative emotional expression. The association between LIWC and PANAS scores was evaluated using multivariate linear regression to adjust for potential confounders. RESULTS: Parents who used more positive words when speaking about the illnesses of their children and the experience of medical decision making were more likely to report lower levels of positive affect on the PANAS: increase in the standard deviation of positive emotional expression was associated with an unadjusted 7.4% decrease in the self-reported positive affect (P = 0.015) and an adjusted 7.0% decrease in the self-reported positive affect (P = 0.057) after modeling for potential confounders. Increase in the standard deviation of negative emotional expression was associated with an adjusted 9.4% increase in the self-reported negative affect (P = 0.036). CONCLUSION: The inverse relationship between parents' positive emotional expression and their self-reported positive affect should remind both researchers and clinicians to be cognizant of the possibilities for emotional miscues, and consequent miscommunication, in the pediatric care setting.
2013
Backlog
Carroll KW
Faerber JA
Feudtner C
Hexem KR
Journal Article
Journal of Pain and Symptom Management
Miller VA
Parent caregivers