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The under reporting of recruitment strategies in research with children with life-threatening illnesses: A systematic review

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 child...

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Autores principales: Hudson, Briony F, Oostendorp, Linda JM, Candy, Bridget, Vickerstaff, Victoria, Jones, Louise, Lakhanpaul, Monica, Bluebond-Langner, Myra, Stone, Paddy
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2016
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5405809/
https://www.ncbi.nlm.nih.gov/pubmed/27609607
http://dx.doi.org/10.1177/0269216316663856
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author Hudson, Briony F
Oostendorp, Linda JM
Candy, Bridget
Vickerstaff, Victoria
Jones, Louise
Lakhanpaul, Monica
Bluebond-Langner, Myra
Stone, Paddy
author_facet Hudson, Briony F
Oostendorp, Linda JM
Candy, Bridget
Vickerstaff, Victoria
Jones, Louise
Lakhanpaul, Monica
Bluebond-Langner, Myra
Stone, Paddy
author_sort Hudson, Briony F
collection PubMed
description 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.
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spelling pubmed-54058092017-05-08 The under reporting of recruitment strategies in research with children with life-threatening illnesses: A systematic review Hudson, Briony F Oostendorp, Linda JM Candy, Bridget Vickerstaff, Victoria Jones, Louise Lakhanpaul, Monica Bluebond-Langner, Myra Stone, Paddy Palliat Med Review Articles 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. SAGE Publications 2016-09-08 2017-05 /pmc/articles/PMC5405809/ /pubmed/27609607 http://dx.doi.org/10.1177/0269216316663856 Text en © The Author(s) 2016 http://creativecommons.org/licenses/by-nc/3.0/ This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 3.0 License (http://www.creativecommons.org/licenses/by-nc/3.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Review Articles
Hudson, Briony F
Oostendorp, Linda JM
Candy, Bridget
Vickerstaff, Victoria
Jones, Louise
Lakhanpaul, Monica
Bluebond-Langner, Myra
Stone, Paddy
The under reporting of recruitment strategies in research with children with life-threatening illnesses: A systematic review
title The under reporting of recruitment strategies in research with children with life-threatening illnesses: A systematic review
title_full The under reporting of recruitment strategies in research with children with life-threatening illnesses: A systematic review
title_fullStr The under reporting of recruitment strategies in research with children with life-threatening illnesses: A systematic review
title_full_unstemmed The under reporting of recruitment strategies in research with children with life-threatening illnesses: A systematic review
title_short The under reporting of recruitment strategies in research with children with life-threatening illnesses: A systematic review
title_sort under reporting of recruitment strategies in research with children with life-threatening illnesses: a systematic review
topic Review Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5405809/
https://www.ncbi.nlm.nih.gov/pubmed/27609607
http://dx.doi.org/10.1177/0269216316663856
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