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Communication about Children's Clinical Trials as Observed and Experienced: Qualitative Study of Parents and Practitioners

BACKGROUND: Recruiting children to clinical trials is perceived to be challenging. To identify ways to optimise recruitment and its conduct, we compared how parents and practitioners described their experiences of recruitment to clinical trials. METHODS AND FINDINGS: This qualitative study ran along...

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Autores principales: Shilling, Valerie, Williamson, Paula R., Hickey, Helen, Sowden, Emma, Beresford, Michael W., Smyth, Rosalind L., Young, Bridget
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2011
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3134466/
https://www.ncbi.nlm.nih.gov/pubmed/21765898
http://dx.doi.org/10.1371/journal.pone.0021604
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author Shilling, Valerie
Williamson, Paula R.
Hickey, Helen
Sowden, Emma
Beresford, Michael W.
Smyth, Rosalind L.
Young, Bridget
author_facet Shilling, Valerie
Williamson, Paula R.
Hickey, Helen
Sowden, Emma
Beresford, Michael W.
Smyth, Rosalind L.
Young, Bridget
author_sort Shilling, Valerie
collection PubMed
description BACKGROUND: Recruiting children to clinical trials is perceived to be challenging. To identify ways to optimise recruitment and its conduct, we compared how parents and practitioners described their experiences of recruitment to clinical trials. METHODS AND FINDINGS: This qualitative study ran alongside four children's clinical trials in 11 UK research sites. It compared analyses of semi-structured interviews with analyses of audio-recordings of practitioner-family dialogue during trial recruitment discussions. Parents from 59 families were interviewed; 41 had participated in audio-recorded recruitment discussions. 31 practitioners were interviewed. Parents said little in the recruitment discussions contributing a median 16% of the total dialogue and asking a median of one question. Despite this, parents reported a positive experience of the trial approach describing a sense of comfort and safety. Even if they declined or if the discussion took place at a difficult time, parents understood the need to approach them and spoke of the value of research. Some parents viewed participation as an ‘exciting’ opportunity. By contrast, practitioners often worried that approaching families about research burdened families. Some practitioners implied that recruiting to clinical trials was something which they found aversive. Many were also concerned about the amount of information they had to provide and believed this overwhelmed families. Whilst some practitioners thought the trial information leaflets were of little use to families, parents reported that they used and valued the leaflets. However, both parties agreed that the leaflets were too long and wanted them to be more reader-friendly. CONCLUSIONS: Parents were more positive about being approached to enter their child into a clinical trial than practitioners anticipated. The concerns of some practitioners, that parents would be overburdened, were unfounded. Educating practitioners about how families perceive clinical trials and providing them with ‘moral’ support in approaching families may benefit paediatric research and, ultimately, patients.
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spelling pubmed-31344662011-07-15 Communication about Children's Clinical Trials as Observed and Experienced: Qualitative Study of Parents and Practitioners Shilling, Valerie Williamson, Paula R. Hickey, Helen Sowden, Emma Beresford, Michael W. Smyth, Rosalind L. Young, Bridget PLoS One Research Article BACKGROUND: Recruiting children to clinical trials is perceived to be challenging. To identify ways to optimise recruitment and its conduct, we compared how parents and practitioners described their experiences of recruitment to clinical trials. METHODS AND FINDINGS: This qualitative study ran alongside four children's clinical trials in 11 UK research sites. It compared analyses of semi-structured interviews with analyses of audio-recordings of practitioner-family dialogue during trial recruitment discussions. Parents from 59 families were interviewed; 41 had participated in audio-recorded recruitment discussions. 31 practitioners were interviewed. Parents said little in the recruitment discussions contributing a median 16% of the total dialogue and asking a median of one question. Despite this, parents reported a positive experience of the trial approach describing a sense of comfort and safety. Even if they declined or if the discussion took place at a difficult time, parents understood the need to approach them and spoke of the value of research. Some parents viewed participation as an ‘exciting’ opportunity. By contrast, practitioners often worried that approaching families about research burdened families. Some practitioners implied that recruiting to clinical trials was something which they found aversive. Many were also concerned about the amount of information they had to provide and believed this overwhelmed families. Whilst some practitioners thought the trial information leaflets were of little use to families, parents reported that they used and valued the leaflets. However, both parties agreed that the leaflets were too long and wanted them to be more reader-friendly. CONCLUSIONS: Parents were more positive about being approached to enter their child into a clinical trial than practitioners anticipated. The concerns of some practitioners, that parents would be overburdened, were unfounded. Educating practitioners about how families perceive clinical trials and providing them with ‘moral’ support in approaching families may benefit paediatric research and, ultimately, patients. Public Library of Science 2011-07-12 /pmc/articles/PMC3134466/ /pubmed/21765898 http://dx.doi.org/10.1371/journal.pone.0021604 Text en Shilling et al. http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are properly credited.
spellingShingle Research Article
Shilling, Valerie
Williamson, Paula R.
Hickey, Helen
Sowden, Emma
Beresford, Michael W.
Smyth, Rosalind L.
Young, Bridget
Communication about Children's Clinical Trials as Observed and Experienced: Qualitative Study of Parents and Practitioners
title Communication about Children's Clinical Trials as Observed and Experienced: Qualitative Study of Parents and Practitioners
title_full Communication about Children's Clinical Trials as Observed and Experienced: Qualitative Study of Parents and Practitioners
title_fullStr Communication about Children's Clinical Trials as Observed and Experienced: Qualitative Study of Parents and Practitioners
title_full_unstemmed Communication about Children's Clinical Trials as Observed and Experienced: Qualitative Study of Parents and Practitioners
title_short Communication about Children's Clinical Trials as Observed and Experienced: Qualitative Study of Parents and Practitioners
title_sort communication about children's clinical trials as observed and experienced: qualitative study of parents and practitioners
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3134466/
https://www.ncbi.nlm.nih.gov/pubmed/21765898
http://dx.doi.org/10.1371/journal.pone.0021604
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