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40
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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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January 2023 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
January List 2023
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2018-001521" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjspcare-2018-001521</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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Research barriers in children and young people with life-limiting conditions: a survey
Publisher
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BMJ Support Palliat Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Adolescent; Child; Humans; Palliative Care/methods; Research Design; Surveys and Questionnaires; Clinical Decisions; Ethics; Methodological Research; Paediatrics; Symptom Management; Symptoms
Creator
An entity primarily responsible for making the resource
Peake JN; Beecham E; Oostendorp LJM; Hudson BF; Stone P; Jones L; Lakhanpaul M; Bluebond-Langner M
Description
An account of the resource
Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to research. OBJECTIVES: To explore the reported experiences, difficulties and proposed solutions of chief investigators (CIs) recruiting CYP with LLCs/LTIs and families in the UK. METHODS: 61 CIs conducting studies with CYP with LLCs/LTIs and their families, identified from the UK National Institute of Health Research portfolio, completed an anonymous, web-based questionnaire, including both closed and open-ended questions. Descriptive statistics and inductive and deductive coding were used to analyse responses. RESULTS: UK CIs cited limitations on funding, governance procedures including Research and Development, Site-Specific and REC approval processes, and clinician gatekeeping as challenges to research. CIs offered some solutions to overcome identified barriers such as working with CYP and their families to ensure their needs are adequately considered in study design and communicated to ethics committees; and designing studies with broad inclusion criteria and developing effective relationships with clinicians in order to overcome clinician gatekeeping. CONCLUSIONS: Many of the challenges and solutions reported by UK CIs have applicability beyond the UK setting. The involvement of clinicians, patients and their families at the inception of and throughout paediatric palliative care research studies is essential. Other important strategies include having clinician research champions and increasing the visibility of research. Further research on the perspectives of all stakeholders, leading to mutually agreed guidance, is required if care and treatment are to improve.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjspcare-2018-001521" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001521</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).
Child
Humans
2022
Adolescent
Beecham E
Bluebond-Langner M
BMJ Support Palliat Care
clinical decisions
Ethics
Hudson BF
January List 2023
Jones L
Lakhanpaul M
methodological research
Oostendorp LJM
Paediatrics
Palliative Care/methods
Peake JN
Research Design
Stone P
Surveys And Questionnaires
Symptom Management
Symptoms
-
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
September 2018 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
October 2018 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2018-001521" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2018-001521</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
Research barriers in children and young people with life-limiting conditions: a survey
Publisher
An entity responsible for making the resource available
BMJ Supportive & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
clinical decisions; ethics; methodological research; paediatrics; symptoms and symptom management
Creator
An entity primarily responsible for making the resource
Peake JN; Beecham E; Oostendorp LJM; Hudson BF; Stone P; Jones L; Lakhanpaul M; Bluebond-Langner M
Description
An account of the resource
Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to research. OBJECTIVES: To explore the reported experiences, difficulties and proposed solutions of chief investigators (CIs) recruiting CYP with LLCs/LTIs and families in the UK. METHODS: 61 CIs conducting studies with CYP with LLCs/LTIs and their families, identified from the UK National Institute of Health Research portfolio, completed an anonymous, web-based questionnaire, including both closed and open-ended questions. Descriptive statistics and inductive and deductive coding were used to analyse responses. RESULTS: UK CIs cited limitations on funding, governance procedures including Research and Development, Site-Specific and REC approval processes, and clinician gatekeeping as challenges to research. CIs offered some solutions to overcome identified barriers such as working with CYP and their families to ensure their needs are adequately considered in study design and communicated to ethics committees; and designing studies with broad inclusion criteria and developing effective relationships with clinicians in order to overcome clinician gatekeeping. CONCLUSIONS: Many of the challenges and solutions reported by UK CIs have applicability beyond the UK setting. The involvement of clinicians, patients and their families at the inception of and throughout paediatric palliative care research studies is essential. Other important strategies include having clinician research champions and increasing the visibility of research. Further research on the perspectives of all stakeholders, leading to mutually agreed guidance, is required if care and treatment are to improve.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjspcare-2018-001521" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001521</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.
2018
Beecham E
Bluebond-Langner M
BMJ Supportive & Palliative Care
clinical decisions
Ethics
Hudson BF
Jones L
Lakhanpaul M
methodological research
October 2018 List
Oostendorp LJM
Paediatrics
Peake JN
September 2018 List
Stone P
symptoms and symptom management
-
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
July 2017 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
The Under Reporting Of Recruitment Strategies In Research With Children With Life-threatening Illnesses: A Systematic Review
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
2017
Creator
An entity primarily responsible for making the resource
Hudson BF; Oostendorp L; Candy B; Vickerstaff V; Jones L; Lakhanpaul M; Bluebond-Langner M; Stone P
Description
An account of the resource
Background: Researchers report difficulties in conducting research with children and young people with life-limiting conditions or life-threatening illnesses and their families. Recruitment is challenged by barriers including ethical, logistical and clinical considerations. Aim: To explore how children and young people (aged 0–25 years) with life-limiting conditions or life-threatening illnesses and their families were identified, invited and consented to research published in the last 5 years. Design: Systematic review. Data sources: MEDLINE, PsycINFO, Web of Science, Sciences Citation Index and SCOPUS were searched for original English language research published between 2009 and 2014, recruiting children and young people with life-limiting conditions or life-threatening illness and their families. Results: A total of 215 studies – 152 qualitative, 54 quantitative and 9 mixed methods – were included. Limited recruitment information but a range of strategies and difficulties were provided. The proportion of eligible participants from those screened could not be calculated in 80% of studies. Recruitment rates could not be calculated in 77%. A total of 31% of studies recruited less than 50% of eligible participants. Reasons given for non-invitation included missing clinical or contact data, or clinician judgements of participant unsuitability. Reasons for non-participation included lack of interest and participants’ perceptions of potential burdens. Conclusion: All stages of recruitment were under reported. Transparency in reporting of participant identification, invitation and consent is needed to enable researchers to understand research implications, bias risk and to whom results apply. Research is needed to explore why consenting participants decide to take part or not and their experiences of research recruitment.
Identifier
An unambiguous reference to the resource within a given context
10.1177/0269216316663856
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).
2017
Bluebond-Langner M
Candy B
Hudson BF
Jones L
July 2017 List
Lakhanpaul M
Oostendorp L
Palliative Medicine
Stone P
Vickerstaff V