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40
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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 2016 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
Difficult Conversations: Discussing Prognosis With Children With Cystic Fibrosis.
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
2016
Creator
An entity primarily responsible for making the resource
Saunders J; Prieur M; Walter M; Borowitz D; Dellon E
Description
An account of the resource
Objectives
Describe how and when individuals with cystic
fibrosis learn about prognosis with a life-limiting
disease, specifically its progressive nature and
the median life expectancy.
Describe the emotional impact of initial communication
about prognosis with cystic fibrosis, a
life-limiting genetic disease.
Acquire new language for initiating conversation
about prognosis with individuals with a lifelimiting
disease as well as a general age-based
timeline for when to initiate prognosis
conversations.
Original Research Background. No published
studies address how patients with cystic fibrosis (CF)
receive and perceive education about disease prognosis.
Related research suggests a need for more
information and strategies for coping with this
burdensome disease and its limited life expectancy.
Research Objectives. To describe patient, parent,
and provider experiences with communication about
prognosis and the emotional impact of initial communication
and to elicit recommendations for improving
communication.
Methods. Semi-structured interviews were conducted
with 18-25-year-olds with CF, parents of the 18-25-yearolds,
and CF care providers at two CF centers. Thematic
analysis of responses was conducted by the
research team.
Results. Thirteen patients, eight parents, and seven
CF care providers (five physicians, one nurse, and
one social worker) participated. More than half of patients
(54%) learned about prognosis independently,
not from a parent or provider. Fear and sadness
were common emotional responses. All groups recommended
in-person, individualized communication,
describing this discussion as a ‘‘milestone’’ in disease
self-management. Most patients (77%) and parents
(86%) felt a provider should initiate communication
about prognosis. Providers described uncertainty
about when to address prognosis and how to instill
hope while sharing information. Limited time, lack
of confidence in addressing this topic, waiting for patient
cues, and protecting parents were the top barriers
to communication. While providers expressed
concern about affecting mood and adherence, most
patients reported that learning about prognosis did
not negatively affect their outlook (79%) and that effects
on adherence were often positive.
Conclusion. Patients with CF and their parents and
providers acknowledge challenges communicating
about prognosis. Patients desire earlier, individualized,
in-person communication. Standardized provider
prompts to initiate communication about
prognosis would ensure all patients are appropriately
aware of prognosis. Age-appropriate educational materials
could be used to facilitate conversations between
patients, families, and providers.
Implications for Research, Policy, and
Practice. Though CF-focused, the themes elicited
from this research can be applied to communicating
prognosis in other life-limiting childhood illnesses.
Identifier
An unambiguous reference to the resource within a given context
DOI: http://dx.doi.org/10.1016/j.jpainsymman.2015.12.250
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).
2016
Borowitz D
Dellon E
Journal of Pain and Symptom Management
March 2016 List
Prieur M
Saunders J
Walter 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://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=11005063" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=11005063</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
The control of pain in palliative care
Publisher
An entity responsible for making the resource available
Journal Of The Royal College Of Physicians Of London
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Terminal Care; Quality of Health Care; quality of life; Practice Guidelines; Human; Palliative Care; Analgesics/therapeutic use; Pain/drug therapy
Creator
An entity primarily responsible for making the resource
Saunders J
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
2000
2000
Analgesics/therapeutic use
Backlog
Human
Journal Article
Journal Of The Royal College Of Physicians Of London
Pain/drug Therapy
Palliative Care
Practice Guidelines
Quality Of Health Care
Quality Of Life
Saunders J
Terminal Care