1
40
3
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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
Lived Experiences Of Parents Caring For A Child With A Life-limiting Condition In Australia: A Qualitative Study.
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Illness; Pediatric Palliative Care; Impact; Services; Cancer; Families; Support; Of-life; Public; Public Environmental & Occupational Health; Caregivers; Medicine General & Internal; Health Care Sciences & Services; Threatening Conditions
Pediatric Palliative Care; Caregiver; Experiences; Life-limiting Conditions; Qualitative
Creator
An entity primarily responsible for making the resource
Collins A; Hennessy-Anderson N; Hosking S; Hynson J; Remedios C; Thomas K
Description
An account of the resource
BACKGROUND:
Experiential studies in paediatric palliative care are needed to enable an ongoing international agenda which supports the development of responsive family supports.
AIM:
To provide an in-depth exploration of the prevalent lived experiences of parents who are currently providing care for a child with a life-limiting condition in Australia.
DESIGN:
Cross-sectional, prospective, qualitative study guided by an advisory group and reported according to the consolidated criteria for reporting qualitative studies. Transcripts were subjected to a thematic analysis, underpinned by an interpretative phenomenological framework.
SETTING/PARTICIPANTS:
Purposively sampled parents (n = 14) recruited from a statewide paediatric hospice who self-identified as a 'primary caregiver' for one or more children and/or adolescents (⩽18 years) with a life-limiting condition.
RESULTS:
Four key themes represented the prevalent experiences of parents: (1) trapped inside the house, (2) the protector, (3) living with the shadow and (4) travelling a different pathway. They describe parents' physical and social isolation, exclusion from the workforce, pervasive grief and associated impacts to their health and well-being. Limited professional and diminished social supports resulted in full ownership of care responsibility. Yet, parents embraced their role as 'protector', reporting acquired meaning and purpose.
CONCLUSION:
This study builds upon the growing body of evidence available in paediatric palliative care internationally. The key themes highlight the substantial demand for both physical and emotional support beyond what is currently offered and call for the implementation of carefully planned support services and other societal initiatives which seek to alleviate the broad health impacts to caregivers.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1177/0269216316634245
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
Cancer
Caregiver
Caregivers
Collins A
Experiences
Families
Health Care Sciences & Services
Hennessy-Anderson N
Hosking S
Hynson J
Illness
Impact
Journal of Palliative Medicine
Life-limiting Conditions
March 2016 List
Medicine General & Internal
Of-life
Pediatric Palliative Care
Public
Public Environmental & Occupational Health
Qualitative
Remedios C
Services
Support
Thomas K
Threatening Conditions
-
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.pec.2011.01.009" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pec.2011.01.009</a>
<a href="http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=Summon&SrcAuth=ProQuest&DestApp=WOS&DestLinkType=FullRecord&UT=000298219800009" target="_blank" rel="noreferrer">http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=Summon&SrcAuth=ProQuest&DestApp=WOS&DestLinkType=FullRecord&UT=000298219800009</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
Perception of empathy in the therapeutic encounter: Effects on the common cold
Publisher
An entity responsible for making the resource available
Patient Education And Counseling
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
empathy; Health aspects; family medicine; CARE MEASURE; Common Cold - therapy; health outcomes; PLACEBO; CARE; Cold (Disease); Common cold; Common Cold - psychology; CONTEXT; CONTROLLED-TRIAL; ECHINACEA; ENVIRONMENTAL & OCCUPATIONAL HEALTH; EXPECTATIONS; GENERAL-PRACTICE CONSULTATIONS; Interdisciplinary; Interleukin-8 - analysis; Medical informatics; Neutrophils - immunology; Patient-practitioner interaction; PUBLIC; RESPIRATORY SYMPTOM SURVEY; SOCIAL SCIENCES; Therapeutic encounter; VALIDATION
Creator
An entity primarily responsible for making the resource
Rakel D; Barrett B; Zhang ZJ; Hoeft T; Chewning B; Marchand L; Scheder J
Description
An account of the resource
To evaluate the effects of patient-practitioner interaction on the severity and duration of the common cold.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pec.2011.01.009" target="_blank" rel="noreferrer">10.1016/j.pec.2011.01.009</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
2011
Backlog
Barrett B
CARE
CARE MEASURE
Chewning B
Cold (Disease)
Common cold
Common Cold - psychology
Common Cold - therapy
CONTEXT
CONTROLLED-TRIAL
ECHINACEA
Empathy
Environmental & Occupational Health
EXPECTATIONS
family medicine
GENERAL-PRACTICE CONSULTATIONS
Health Aspects
health outcomes
Hoeft T
Interdisciplinary
Interleukin-8 - analysis
Journal Article
Marchand L
Medical informatics
Neutrophils - immunology
Patient Education and Counseling
Patient-practitioner interaction
PLACEBO
Public
Rakel D
RESPIRATORY SYMPTOM SURVEY
Scheder J
Social Sciences
Therapeutic encounter
VALIDATION
Zhang ZJ
-
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 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
Parental Involvement In Neonatal Critical Care Decision-making.
Publisher
An entity responsible for making the resource available
Sociology Of Health & Illness
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Sociology; Life; Interrogatives; Consultation; Social Sciences; Biomedical; Decision Making; Shared Decision; Recommendations; Medical Authority; Communication; Conversation; End Of Life Care; Public; Public Environmental & Occupational Health; End; Resistance; Training; Cooperation; Communication; Palliative Care; Decision Making; Intensive Care; Participation; Ethics; Medicine; Physicians; Parents; Conversational Analysis; Decisions; Infant; Palliative Treatment; Parenting; Infants (newborn); Decision Making; Parent And Child; Analysis
Conversation Analysis; Decision-making; End Of Life; Ethics; Neonatal; Parental Involvement
Creator
An entity primarily responsible for making the resource
Shaw C; Stokoe E; Gallagher K; Aladangady N; Marlow N
Description
An account of the resource
The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care at the end of life. Thirty one families were recruited from a neonatal intensive care unit in England and their formal interactions with the doctor recorded. The conversations were transcribed and analysed using conversation analysis. Analysis focused on sequences in which decisions about the redirection of care were initiated and progressed. Two distinct communicative approaches to decision-making were used by doctors: 'making recommendations' and 'providing options'. Different trajectories for parental involvement in decision-making were afforded by each design, as well as differences in terms of the alignments, or conflicts, between doctors and parents. 'Making recommendations' led to misalignment and reduced opportunities for questions and collaboration; 'providing options' led to an aligned approach with opportunities for questions and fuller participation in the decision-making process. The findings are discussed in the context of clinical uncertainty, moral responsibility and the implications for medical communication training and guidance.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1111/1467-9566.12455
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
Aladangady N
Analysis
Biomedical
Communication
Consultation
Conversation
Conversation Analysis
Conversational Analysis
Cooperation
Decision Making
Decision-making
Decisions
End
End Of Life
End Of Life Care
Ethics
Gallagher K
Infant
Infants (newborn)
Intensive Care
Interrogatives
Life
Marlow N
Medical Authority
Medicine
Neonatal
Palliative Care
Palliative Treatment
Parent And Child
Parental Involvement
Parenting
Parents
Participation
Physicians
Public
Public Environmental & Occupational Health
Recommendations
Resistance
September 2016 List
Shared Decision
Shaw C
Social Sciences
Sociology
Sociology of Health & Illness
Stokoe E
Training