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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
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
Keeping All Options Open: Parents' Approaches To Advance Care Planning
Publisher
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Health Expectations
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Advance Care Planning; ChildrenĀ and Young People; Interviews; Life-limiting Conditions; Life-threatening Illnesses; Parents
Creator
An entity primarily responsible for making the resource
Beecham E; Oostendorp L; Crocker J; Kelly P; Dinsdale A; Hemsley J; Russell J; Jones L; Bluebond-Langner M
Description
An account of the resource
BACKGROUND:
Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or experience of ACP.
OBJECTIVE:
To investigate how parents of children and young people with LLCs approach and experience ACP.
METHODS:
Open-ended, semi-structured interviews were conducted with parents of 18 children; nine children who were currently receiving palliative care services, and nine children who had received palliative care and died. Verbatim transcripts of audiotaped interviews were analysed following principles of grounded theory while acknowledging the use of deductive strategies, taking account of both the child's condition, and the timing and nature of decisions made.
RESULTS:
Parents reported having discussions and making decisions about the place of care, place of death and the limitation of treatment. Most decisions were made relatively late in the illness and by parents who wished to keep their options open. Parents reported different levels of involvement in a range of decisions; many wished to be involved in decision making but did not always feel able to do so.
DISCUSSION:
This study highlights that parents' approaches to decision making vary by the type of decision required. Their views may change over time, and it is important to allow them to keep their options open. We recommend that clinicians have regular discussions over the course of the illness in an effort to understand parents' approaches to particular decisions rather than to drive to closure prematurely.
Identifier
An unambiguous reference to the resource within a given context
10.1111/hex.12500
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
Advance Care Planning
Beecham E
Bluebond-Langner M
children and young people
Crocker J
Dinsdale A
Health Expectations
Hemsley J
Interviews
Jones L
Kelly P
Life-limiting Conditions
Life-threatening Illnesses
Oostendorp L
Parents
Russell J
September 2016 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
Backlog
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2014-000653.17" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmjspcare-2014-000653.17</a>
<a href="http://spcare.bmj.com/content/4/1/110.3" target="_blank" rel="noreferrer">http://spcare.bmj.com/content/4/1/110.3</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
Recruiting Parents to Paediatric Palliative Care Research: Impact of Low Invitation Rates on Sample Bias
Publisher
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Bmj Supportive & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Supportive care
Creator
An entity primarily responsible for making the resource
Crocker JC; Beecham EC; Kelly P; Dinsdale AD; Hemsley J; Jones L; Bluebond-Langner M
Description
An account of the resource
Introduction Recruitment in paediatric palliative care is widely reported as challenging, with low rates of invitation by clinicians. The impact of this on sample bias is unknown. Aim(s) and method(s) We studied recruitment to a qualitative interview study about parental decision making for children cared for by a specialist palliative care (PC) team. PC clinicians were encouraged to introduce the study to parents over 12 months. With ethical approval, we used information from the PC team database and feedback from clinicians to explore the impact of low invitation rates on sample bias. Results The families of 519 living and 73 deceased patients were retrospectively identified as potentially eligible for recruitment. Clinicians invited parents of 28 (5.4%) living patients compared to 21 (28.8%) deceased patients (p=0.0001). On multivariable analyses, there was no association between patient demographics and invitation, but for living patients, total and out-of-hours contact time between family and PC team while eligible were independently associated with invitation (p<0.05). The most common reasons clinicians gave for not inviting parents of living and deceased patients were little or no contact with them and perceived burden. Conclusion(s) Invitation rates were especially low among parents of living patients. There was no evidence that this led to major demographic bias. However, the strong influence of family contact may have introduced bias potentially relevant to the project (e.g. patient stability and parent-clinician relationships) that we were unable to measure. We recommend that researchers consider levels of patient contact when planning studies requiring recruitment via clinicians.
2014-03
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjspcare-2014-000653.17" target="_blank" rel="noreferrer">10.1136/bmjspcare-2014-000653.17</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
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Journal Article
2014
Backlog
Beecham EC
Bluebond-Langner M
BMJ Supportive & Palliative Care
Crocker JC
Dinsdale AD
Hemsley J
Jones L
Journal Article
Kelly P
Supportive Care