Sharing research results with Latina breast cancer survivors who participated in a community-engaged behavioral RCT study: a descriptive cross-sectional survey study.
Cancer survivors
Community participation
Community-based participatory research
Hispanic Americans
Information dissemination
Language
Literacy
Minority groups
Rural population
Surveys and questionnaires
Journal
Trials
ISSN: 1745-6215
Titre abrégé: Trials
Pays: England
ID NLM: 101263253
Informations de publication
Date de publication:
08 Jan 2022
08 Jan 2022
Historique:
received:
27
02
2021
accepted:
17
12
2021
entrez:
9
1
2022
pubmed:
10
1
2022
medline:
12
1
2022
Statut:
epublish
Résumé
An often heard and justifiable concern of ethnic minorities is related to researchers' lack of attention to sharing the results of a study with participants after the study has concluded. Few studies have examined the effects of returning overall study results on participants' attitudes, especially among populations underrepresented in research. Among Latina research participants, providing a summary of study results could enhance participation in research. We assess Latina breast cancer survivors' reactions to receiving study results and their attitudes about participating in future studies. For this cross-sectional survey study, all women who had participated in two behavioral randomized controlled trials (RCTs) were mailed a letter summarizing the study results (using written and graphic formats) and a questionnaire assessing problems and understanding the results, importance of sharing results, willingness to participate in future studies, and format preferences for receiving the results. A postage-paid envelope for returning the completed questionnaire was included. Logistic regression examined the associations of age, education, and rural/urban residence on format preferences and willingness to participate. The survey sample consisted of 304 low-income, predominantly Spanish-speaking Latina breast cancer survivors (151 from urban and 153 from rural communities) who had participated in two RCTs testing a stress management program designed for Latina breast cancer survivors. Ninety-two women returned the questionnaires (30.3%). Most of the women (91.1%) indicated that they had no trouble understanding the results of the study, and 97% agreed that it is very/extremely important for researchers to share the study result with the participants. The majority (60.2%) reported that receiving the results increased their willingness to participate in future studies. About half (51.7%) did not have a format preference, 37.4% preferred written summaries, and 10.9% preferred graphs. This study is an important first step to understanding the impact of returning study results among a population that is underrepresented in research. Returning the results of studies and understanding the impact of doing so is consistent with maintaining community involvement in all phases of research. The findings suggest that sharing aggregate research results in simple language yields few problems in participants' understanding of the results and is viewed as important by participants. ClinicalTrials.gov NCT02931552 Date registered: October 13, 2016 and NCT01383174 Date registered: June 28, 2011.
Sections du résumé
BACKGROUND
BACKGROUND
An often heard and justifiable concern of ethnic minorities is related to researchers' lack of attention to sharing the results of a study with participants after the study has concluded. Few studies have examined the effects of returning overall study results on participants' attitudes, especially among populations underrepresented in research. Among Latina research participants, providing a summary of study results could enhance participation in research. We assess Latina breast cancer survivors' reactions to receiving study results and their attitudes about participating in future studies.
METHODS
METHODS
For this cross-sectional survey study, all women who had participated in two behavioral randomized controlled trials (RCTs) were mailed a letter summarizing the study results (using written and graphic formats) and a questionnaire assessing problems and understanding the results, importance of sharing results, willingness to participate in future studies, and format preferences for receiving the results. A postage-paid envelope for returning the completed questionnaire was included. Logistic regression examined the associations of age, education, and rural/urban residence on format preferences and willingness to participate. The survey sample consisted of 304 low-income, predominantly Spanish-speaking Latina breast cancer survivors (151 from urban and 153 from rural communities) who had participated in two RCTs testing a stress management program designed for Latina breast cancer survivors.
RESULTS
RESULTS
Ninety-two women returned the questionnaires (30.3%). Most of the women (91.1%) indicated that they had no trouble understanding the results of the study, and 97% agreed that it is very/extremely important for researchers to share the study result with the participants. The majority (60.2%) reported that receiving the results increased their willingness to participate in future studies. About half (51.7%) did not have a format preference, 37.4% preferred written summaries, and 10.9% preferred graphs.
CONCLUSIONS
CONCLUSIONS
This study is an important first step to understanding the impact of returning study results among a population that is underrepresented in research. Returning the results of studies and understanding the impact of doing so is consistent with maintaining community involvement in all phases of research. The findings suggest that sharing aggregate research results in simple language yields few problems in participants' understanding of the results and is viewed as important by participants.
TRIAL REGISTRATION
BACKGROUND
ClinicalTrials.gov NCT02931552 Date registered: October 13, 2016 and NCT01383174 Date registered: June 28, 2011.
Identifiants
pubmed: 34998436
doi: 10.1186/s13063-021-05945-8
pii: 10.1186/s13063-021-05945-8
pmc: PMC8742155
doi:
Banques de données
ClinicalTrials.gov
['NCT02931552', 'NCT01383174']
Types de publication
Journal Article
Randomized Controlled Trial
Langues
eng
Sous-ensembles de citation
IM
Pagination
25Subventions
Organisme : NIA NIH HHS
ID : P30 AG015272
Pays : United States
Organisme : NIA NIH HHS
ID : 1 P30 AG15272
Pays : United States
Informations de copyright
© 2022. The Author(s).
Références
J Community Psychol. 2019 Nov;47(8):1865-1892
pubmed: 31441516
Psychooncology. 2020 Nov;29(11):1802-1814
pubmed: 32672864
Am J Prev Med. 2010 Oct;39(4):372-8
pubmed: 20837290
JAMA. 2018 Dec 25;320(24):2601
pubmed: 30575874
Dev World Bioeth. 2015 Dec;15(3):267-74
pubmed: 25292263
Am Psychol. 2018 Oct;73(7):884-898
pubmed: 29355352
N Engl J Med. 2020 Aug 27;383(9):e59
pubmed: 32780573
Pediatr Res. 2021 Mar;89(4):714-715
pubmed: 32492697
AJOB Empir Bioeth. 2017 Apr-Jun;8(2):69-74
pubmed: 28949841
J Health Care Poor Underserved. 2010 Aug;21(3):879-97
pubmed: 20693733
Am J Public Health. 2015 Jul;105 Suppl 3:e55-63
pubmed: 25905829
Qual Health Res. 2017 Jan;27(1):130-137
pubmed: 26825482
Ethn Dis. 2020 Jul 9;30(3):429-432
pubmed: 32742146
J Cancer Educ. 2018 Aug;33(4):875-884
pubmed: 28275966
Health Aff (Millwood). 2019 Mar;38(3):399-407
pubmed: 30830824
Trials. 2017 Oct 2;18(1):449
pubmed: 28969665
J Med Ethics. 2008 Sep;34(9):e17
pubmed: 18757617
Int J Environ Res Public Health. 2018 Sep 24;15(10):
pubmed: 30249985
J Med Ethics. 2008 Mar;34(3):210-3
pubmed: 18316466
PLoS One. 2019 Oct 16;14(10):e0224068
pubmed: 31618266
Genet Med. 2012 Apr;14(4):490-6
pubmed: 22261761
J Urban Health. 2007 Jul;84(4):478-93
pubmed: 17436114
PLoS Med. 2006 Feb;3(2):e19
pubmed: 16318411
Contemp Clin Trials Commun. 2017 Sep;7:57-63
pubmed: 29226266
Clin Trials. 2014 Apr;11(2):230-8
pubmed: 24577971
Breast Cancer Res Treat. 2009 May;115(1):123-9
pubmed: 18543100
J Transcult Nurs. 1999 Oct;10(4):340-9
pubmed: 10693425
Clin Med (Lond). 2020 Jul;20(4):e120-e122
pubmed: 32628127