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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...
Autores principales: | , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Public Library of Science
2011
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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. |
format | Online Article Text |
id | pubmed-3134466 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2011 |
publisher | Public Library of Science |
record_format | MEDLINE/PubMed |
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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