Communication about children's clinical trials as observed and experienced: qualitative study of parents and practitioners.

<h4>Background</h4>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.<h4>Methods and findings</h...

Descripción completa

Guardado en:

Detalles Bibliográficos
Autores principales:	Valerie Shilling, Paula R Williamson, Helen Hickey, Emma Sowden, Michael W Beresford, Rosalind L Smyth, Bridget Young
Formato:	article
Lenguaje:	EN
Publicado:	Public Library of Science (PLoS) 2011
Materias:	Medicine R Science Q
Acceso en línea:	https://doaj.org/article/587c6e32665c4095b0cf416a9faf5619
Etiquetas:	Agregar Etiqueta Sin Etiquetas, Sea el primero en etiquetar este registro!

id	oai:doaj.org-article:587c6e32665c4095b0cf416a9faf5619
record_format	dspace
spelling	oai:doaj.org-article:587c6e32665c4095b0cf416a9faf56192021-11-18T06:50:26ZCommunication about children's clinical trials as observed and experienced: qualitative study of parents and practitioners.1932-620310.1371/journal.pone.0021604https://doaj.org/article/587c6e32665c4095b0cf416a9faf56192011-01-01T00:00:00Zhttps://www.ncbi.nlm.nih.gov/pmc/articles/pmid/21765898/?tool=EBIhttps://doaj.org/toc/1932-6203<h4>Background</h4>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.<h4>Methods and findings</h4>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.<h4>Conclusions</h4>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.Valerie ShillingPaula R WilliamsonHelen HickeyEmma SowdenMichael W BeresfordRosalind L SmythBridget YoungPublic Library of Science (PLoS)articleMedicineRScienceQENPLoS ONE, Vol 6, Iss 7, p e21604 (2011)
institution	DOAJ
collection	DOAJ
language	EN
topic	Medicine R Science Q
spellingShingle	Medicine R Science Q Valerie Shilling Paula R Williamson Helen Hickey Emma Sowden Michael W Beresford Rosalind L Smyth Bridget Young Communication about children's clinical trials as observed and experienced: qualitative study of parents and practitioners.
description	<h4>Background</h4>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.<h4>Methods and findings</h4>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.<h4>Conclusions</h4>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	article
author	Valerie Shilling Paula R Williamson Helen Hickey Emma Sowden Michael W Beresford Rosalind L Smyth Bridget Young
author_facet	Valerie Shilling Paula R Williamson Helen Hickey Emma Sowden Michael W Beresford Rosalind L Smyth Bridget Young
author_sort	Valerie Shilling
title	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_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_sort	communication about children's clinical trials as observed and experienced: qualitative study of parents and practitioners.
publisher	Public Library of Science (PLoS)
publishDate	2011
url	https://doaj.org/article/587c6e32665c4095b0cf416a9faf5619
work_keys_str_mv	AT valerieshilling communicationaboutchildrensclinicaltrialsasobservedandexperiencedqualitativestudyofparentsandpractitioners AT paularwilliamson communicationaboutchildrensclinicaltrialsasobservedandexperiencedqualitativestudyofparentsandpractitioners AT helenhickey communicationaboutchildrensclinicaltrialsasobservedandexperiencedqualitativestudyofparentsandpractitioners AT emmasowden communicationaboutchildrensclinicaltrialsasobservedandexperiencedqualitativestudyofparentsandpractitioners AT michaelwberesford communicationaboutchildrensclinicaltrialsasobservedandexperiencedqualitativestudyofparentsandpractitioners AT rosalindlsmyth communicationaboutchildrensclinicaltrialsasobservedandexperiencedqualitativestudyofparentsandpractitioners AT bridgetyoung communicationaboutchildrensclinicaltrialsasobservedandexperiencedqualitativestudyofparentsandpractitioners
_version_	1718424292785389568

Communication about children's clinical trials as observed and experienced: qualitative study of parents and practitioners.

Ejemplares similares