1
40
1
-
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
August 2018 List
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).
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 2018 List
URL Address
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216318769196</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
Barriers to research with children and young people with life-limiting conditions and their families: A survey of chief investigators' views, experiences and proposed solutions
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
human; child; female; male; major clinical study; conference abstract; patient referral; scientist; funding; intervention study; thinking; clinical research; embedding; publication; visibility
Creator
An entity primarily responsible for making the resource
Peake J; Beecham E; Oostendorp L; Hudson B; Stone P; Jones L; Lakhanpaul M; Bluebond-Langner M
Description
An account of the resource
Background/aims: Undertaking research with children and young people (CYP) with life-limiting conditions (LLC) and life threatening illnesses (LTI) is challenging. Previous research has highlighted barriers, such as obtaining ethics approval and clinician gatekeeping, that delay research or result in studies not recruiting to target. This study aimed to provide more in-depth insight on the views, experiences and solutions of Chief Investigators (CIs) recruiting CYP with LLC and LTI and their families in the UK. Methods: We developed an online survey based on a scoping review of the literature and previous rapid survey. The new survey contained closed and open-ended questions and was divided into 3 sections: (1) the CI's most recent project; (2) the CI's overall experience of research with this population; (3) demographic information. Participants were 61 CIs conducting studies with CYP with LLC and LTI and families, identified from the UK NIHR Clinical Research Network Portfolio. Results: Chief investigators reported funding (51%) to be the biggest barrier to research with this population, followed by institutional factors (e.g. research and development approval) (11%) and clinician factors (e.g. gatekeeping) (9%). CIs suggested several generic solutions (e.g. having a well thought out question and methodology to improve chances of obtaining funding). Solutions that were particularly relevant included embedding researchers in clinical teams, involving CYP and families early on in the research process, meeting the specific needs of CYP and families and designing clear and age appropriate written information for CYP. Given the usually low number of eligible CYP, inclusion criteria should be broad and investigators should be aware of the complexity of approvals required for multi-centre studies. Researchers should invest in developing good relationships with clinicians to reduce gatekeeping and attempt to interest them in studies other than intervention trials, which are quite common in this population. Conclusions: The involvement of clinicians, CYP and families at the inception of studies should be considered a priority for research with CYP with LLC and LTI and families. Other potential strategies include increasing the visibility of research, embedding researchers in clinical teams, having clinician research champions, and acknowledging in peerreviewed manuscripts those clinicians who do recruit to studies.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</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).
2018
August 2018 List
Beecham E
Bluebond-Langner M
Child
Clinical Research
conference abstract
embedding
Female
Funding
Hudson B
Human
intervention study
Jones L
Lakhanpaul M
Major Clinical Study
Male
Oostendorp L
Palliative Medicine
Patient Referral
Peake J
publication
Scientist
Stone P
thinking
visibility