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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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August 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
August 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.07.042" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.07.042</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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To Disclose or Not to Disclose: A Case Highlighting the Challenge of Conflicts in Pediatric Disclosure
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
Child; Humans; Bereavement; Pediatric oncology; Disclosure; Grief; End-of-life; Disclosure of information; Family caregiver
Creator
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Martinez I; Hoppmann A; Perna S; Byrd P; Wolfe J; Aye J; Johnston EE
Description
An account of the resource
Owing to differences in opinion about patient autonomy and perceived maturity, discussing diagnosis and prognosis with children can be challenging. Shifting away from “never tell” and “always tell” approaches, recent articles have championed more nuanced case-by-case approaches to disclosure of information to children. 1234 Here we present the case of Ari (names have been changed for confidentiality), a 10-year-old female with metastatic NUT (nuclear protein of the testis) carcinoma—a rare and aggressive tumor with poor prognosis, 5 , 6 —whose medical course was complicated by parental wishes to withhold diagnostic and prognostic information from their daughter. Coupled with an interview (for an unrelated, institutional review board–approved research study) with Ari's mother 9 months after her daughter's death, the medical team's experience highlights the complexity of navigating care for families who desire to withhold medical information from their child. We use this case as an opportunity to discuss the current literature on child and young adolescent preferences for disclosure of information and highlight existing guidelines around pediatric disclosure that can help clinicians when there are disagreements about pediatric disclosure.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2020.07.042" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.07.042</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).
2021
August 2021 List
Aye J
Bereavement
Byrd P
Child
Disclosure
Disclosure of information
end-of-life
family caregiver
Grief
Hoppmann A
Humans
Johnston EE
Journal of Pain and Symptom Management
Martinez I
Pediatric Oncology
Perna S
Wolfe J
-
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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2018 Oncology 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
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1111/ecc.12680" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1111/ecc.12680</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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Towards culturally competent paediatric oncology care. A qualitative study from the perspective of care providers
Publisher
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European journal of cancer 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
Oncology Nursing; Netherlands; Neoplasms/th [Therapy]; Communication Barriers; Humans; Qualitative Research; Pediatrics; Palliative Care; Attitude of Health Personnel; Disclosure; Cultural Competency; Oncologists; Culturally Competent Care; Emigrants and Immigrants; Nurses Pediatric; Morocco/eh [Ethnology]; Turkey/eh [Ethnology]
Creator
An entity primarily responsible for making the resource
Suurmond J; Lieveld A; van de Wetering M; Schouten-van Meeteren AYN
Description
An account of the resource
In order to gain more insight on the influence of ethnic diversity in paediatric cancer care, the perspectives of care providers were explored. Semi-structured interviews were conducted among 12 paediatric oncologists and 13 nurses of two different paediatric oncology wards and were analysed using a framework method. We found that care providers described the contact with Turkish and Moroccan parents as more difficult. They offered two reasons for this: (1) language barriers between care provider and parents hindered the exchange of information; (2) cultural barriers between care provider and parents about sharing the diagnosis and palliative perspective hindered communication. Care providers reported different solutions to deal with these barriers, such as using an interpreter and improving their cultural knowledge about their patients. They, however, were not using interpreters sufficiently and were unaware of the importance of eliciting parents' perspectives. Communication techniques to overcome dilemmas between parents and care providers were not used and care providers were unaware of stereotypes and prejudice. Care providers should be offered insight in cultural barriers they are unaware of. Training in cultural competence might be a possibility to overcome manifest barriers.Copyright � 2017 John Wiley & Sons Ltd.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/%2010.1111/ecc.12680" target="_blank" rel="noreferrer noopener">10.1111/ecc.12680</a>
2017
Attitude Of Health Personnel
Communication Barriers
Cultural Competency
Culturally Competent Care
Disclosure
Emigrants and Immigrants
European Journal Of Cancer Care
Humans
Lieveld A
Morocco/eh [Ethnology]
Neoplasms/th [therapy]
Netherlands
Nurses Pediatric
oncologists
Oncology 2018 List
Oncology Nursing
Palliative Care
Pediatrics
Qualitative Research
Schouten-van Meeteren AYN
Suurmond J
Turkey/eh [Ethnology]
van de Wetering M
-
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/archinte.1995.00430060097012" target="_blank" rel="noreferrer">http://doi.org/10.1001/archinte.1995.00430060097012</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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Decisions about life-sustaining treatment. Impact of physicians' behaviors on the family
Publisher
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Archives Of Internal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
1995
Subject
The topic of the resource
Humans; Consensus; Withholding Treatment; Communication; Life Support Care; Physician's Role; Nurse's Role; Professional-Patient Relations; Disclosure; Empirical Approach; P.H.S.; Professional Patient Relationship; Research Support; U.S. Gov't; Death and Euthanasia; Interviews; decision making; Family/psychology; Practice Guidelines
Creator
An entity primarily responsible for making the resource
Tilden VP; Tolle SW; Garland MJ; Nelson CA
Description
An account of the resource
BACKGROUND: Despite the growing availability of advance directives, most patients in the intensive care unit lack written directives, and, therefore, consultation with families about treatment decisions remains the rule. In the context of decision making about withdrawing life-sustaining treatments, we investigated which physician and nurse behaviors families find supportive and which behaviors increase the family's burden. METHODS: We conducted intensive 1- to 2-hour-long individual interviews using a semistructured interview protocol with 32 family members of patients without advance directives whose deaths followed a stay in the intensive care unit and withdrawal of treatment. We analyzed more than 700 pages of verbatim interview data using content analysis techniques and achieved more than 90% interrater agreement on data codes. RESULTS: Themes emerged as families identified selected physician and nursing behaviors as helpful: encouraging advanced planning, timely communication, clarification of families' roles, facilitating family consensus, and accommodating family's grief. Behaviors that made families feel excluded or increased their burden included postponing discussions about treatment withdrawal, delaying withdrawal once scheduled, placing the full burden of decision making on one person, withdrawing from the family, and defining death as a failure. CONCLUSIONS: Study findings provide an increased understanding of the unmet needs of families and serve to guide physicians and nurses in reducing actions that increase families' burdens as they participate in treatment withdrawal decisions.
1995
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/archinte.1995.00430060097012" target="_blank" rel="noreferrer">10.1001/archinte.1995.00430060097012</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
1995
Archives Of Internal Medicine
Backlog
Communication
Consensus
Death and Euthanasia
Decision Making
Disclosure
Empirical Approach
Family/psychology
Garland MJ
Humans
Interviews
Journal Article
Life Support Care
Nelson CA
Nurse's Role
P.H.S.
Physician's Role
Practice Guidelines
Professional Patient Relationship
Professional-patient Relations
Research Support
Tilden VP
Tolle SW
U.S. Gov't
Withholding Treatment
-
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/jama.1997.03550120089044" target="_blank" rel="noreferrer">http://doi.org/10.1001/jama.1997.03550120089044</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
Influence of physician confidentiality assurances on adolescents' willingness to disclose information and seek future health care. A randomized controlled trial
Publisher
An entity responsible for making the resource available
Jama
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Female; Humans; Male; Physician-Patient Relations; Truth Disclosure; California; Analysis of Variance; Disclosure; Regression Analysis; adolescent; Empirical Approach; Professional Patient Relationship; Adolescent Transitions; Adolescent Health Services/utilization; Confidentiality
Creator
An entity primarily responsible for making the resource
Ford CA; Millstein SG; Halpern-Felsher BL; Irwin CE
Description
An account of the resource
CONTEXT: Adolescents' concerns about privacy in clinical settings decrease their willingness to seek health care for sensitive problems and may inhibit their communication with physicians. OBJECTIVE: To investigate the influence of physicians' assurances of confidentiality on adolescents' willingness to disclose information and seek future health care. DESIGN: Randomized controlled trial. SETTING: Three suburban public high schools in California. PARTICIPANTS: The 562 participating adolescents represented 92% of students in mandatory classes. INTERVENTION: After random assignment to 1 of 3 groups, the adolescents listened to a standardized audiotape depiction of an office visit during which they heard a physician who assured unconditional confidentiality, a physician who assured conditional confidentiality, or a physician who did not mention confidentiality. MAIN OUTCOME MEASURES: Adolescents' willingness to disclose general information, willingness to disclose information about sensitive topics, intended honesty, and likelihood of return visits to the physician depicted in the scenario were assessed by anonymous written questionnaire. RESULTS: Assurances of confidentiality increased the number of adolescents willing to disclose sensitive information about sexuality, substance use, and mental health from 39% (68/175) to 46.5% (178/383) (beta=.10, P=.02) and increased the number willing to seek future health care from 53% (93/175) to 67% (259/386) (beta=.17, P
1997
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jama.1997.03550120089044" target="_blank" rel="noreferrer">10.1001/jama.1997.03550120089044</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
1997
Adolescent
Adolescent Health Services/utilization
Adolescent Transitions
Analysis of Variance
Backlog
California
Confidentiality
Disclosure
Empirical Approach
Female
Ford CA
Halpern-Felsher BL
Humans
Irwin CE
JAMA
Journal Article
Male
Millstein SG
Physician-patient Relations
Professional Patient Relationship
Regression Analysis
Truth Disclosure