Literature DB >> 21644025

Reported benefits of participation in a research study.

Anabella G Castillo1, Lina Jandorf, Linda D Thélémaque, Sheba King, Katherine Duhamel.   

Abstract

Racial and ethnic minorities are significantly underrepresented in clinical research trials. Several socio-cultural and systemic barriers, ranging from discrimination by the health care system, medical mistrust, to low physician referral rates and lack of knowledge of research studies have been identified as impacting participation. One hundred and fifteen participants were culturally matched and were interviewed followed by up to an additional four interviews over a 12 month period. Responses were analyzed to understand the perceived benefits to participating in a prospective, randomized, longitudinal clinical research trial about screening colonoscopy. Over two-thirds (64.4%) of participants reported "knowledge, awareness, and/or information about colonoscopy and general health" as being the greatest benefit they received. Desire to undergo the screening and the pride of completing the study was ranked second and third, respectively. Understanding the reasons that participants choose to participate in research studies will ultimately assist researchers close the gap in minority representation, allowing for greater generalizability of research findings.

Entities:  

Mesh:

Year:  2012        PMID: 21644025      PMCID: PMC4399714          DOI: 10.1007/s10900-011-9416-0

Source DB:  PubMed          Journal:  J Community Health        ISSN: 0094-5145


  22 in total

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2.  Twenty years after. The legacy of the Tuskegee Syphilis Study. When evil intrudes.

Authors:  A L Caplan
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Review 3.  The achievements, impact, and future of the National Polyp Study.

Authors:  Sidney J Winawer
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Review 4.  Why African Americans may not be participating in clinical trials.

Authors:  Y Harris; P B Gorelick; P Samuels; I Bempong
Journal:  J Natl Med Assoc       Date:  1996-10       Impact factor: 1.798

5.  The relative importance of patient-reported barriers to colorectal cancer screening.

Authors:  Resa M Jones; Steven H Woolf; Tina D Cunningham; Robert E Johnson; Alex H Krist; Stephen F Rothemich; Sally W Vernon
Journal:  Am J Prev Med       Date:  2010-03-28       Impact factor: 5.043

6.  A study of midlife women's reasons for changing healthcare providers.

Authors:  Holly Powell Kennedy; Diana Taylor; Kathryn A Lee
Journal:  J Am Acad Nurse Pract       Date:  2005-11

Review 7.  Screening of colorectal cancer: progress and problems.

Authors:  Sidney J Winawer
Journal:  Recent Results Cancer Res       Date:  2005

8.  Participation in cancer clinical trials: race-, sex-, and age-based disparities.

Authors:  Vivek H Murthy; Harlan M Krumholz; Cary P Gross
Journal:  JAMA       Date:  2004-06-09       Impact factor: 56.272

9.  Understanding why older people participate in clinical trials: the experience of the Scottish PROSPER participants.

Authors:  Elizabeth P Tolmie; Moira M B Mungall; Greig Louden; Grace M Lindsay; Allan Gaw
Journal:  Age Ageing       Date:  2004-05-19       Impact factor: 10.668

10.  Increasing colorectal cancer screening among African Americans, linking risk perception to interventions targeting patients, communities and clinicians.

Authors:  Stephanie H Ward; Karen Lin; Brian Meyer; Sarah B Bass; Lalitha Parameswaran; Thomas F Gordon; Sheryl Burt Ruzek
Journal:  J Natl Med Assoc       Date:  2008-06       Impact factor: 2.739

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  12 in total

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Authors:  Susan L Rosenthal; Marilyn C Morris; Lily F Hoffman; Gregory D Zimet
Journal:  Clin Pract Pediatr Psychol       Date:  2018-05-24

2.  Participant-Centered Strategies for Overcoming Barriers to Biospecimen Collection among Spanish-Speaking Latina Breast Cancer Survivors.

Authors:  Cathy Samayoa; Jasmine Santoyo-Olsson; Cristian Escalera; Anita L Stewart; Carmen Ortiz; Leticia Márquez-Magaña; Aday Urias; Nayeli Gonzalez; Silvia A Cervantes; Alma Torres-Nguyen; Lorenia Parada-Ampudia; Anna M Nápoles
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2020-03       Impact factor: 4.254

3.  Mothers of babies enrolled in a randomized trial immediately after birth report a positive experience.

Authors:  D L Harris; P J Weston; J E Harding
Journal:  J Perinatol       Date:  2014-01-30       Impact factor: 2.521

4.  Motivational assessment of non-treatment buprenorphine research participation in heroin dependent individuals.

Authors:  Gina Papke; Mark K Greenwald
Journal:  Drug Alcohol Depend       Date:  2011-12-02       Impact factor: 4.492

5.  How Should Representation of Subjects With LEP Become More Equitable in Clinical Trials?

Authors:  Jonathan Alhalel; Nicolás Francone; Sharon Post; Catherine A O'Brian; Melissa A Simon
Journal:  AMA J Ethics       Date:  2022-04-01

6.  Connecting communities to health research: development of the Project CONNECT minority research registry.

Authors:  Melissa A Green; Mimi M Kim; Sharrelle Barber; Abedowale A Odulana; Paul A Godley; Daniel L Howard; Giselle M Corbie-Smith
Journal:  Contemp Clin Trials       Date:  2013-01-20       Impact factor: 2.226

7.  Establishing trust in HIV/HCV research among people who inject drugs (PWID): Insights from empirical research.

Authors:  Roberto Abadie; Shira Goldenberg; Melissa Welch-Lazoritz; Celia B Fisher
Journal:  PLoS One       Date:  2018-12-05       Impact factor: 3.240

8.  Knowledge, Attitudes, and Practices Regarding COVID-19 among Healthcare Workers in Uganda: A Cross-Sectional Survey.

Authors:  Onesmus Kamacooko; Jonathan Kitonsa; Ubaldo M Bahemuka; Freddie M Kibengo; Anne Wajja; Vincent Basajja; Alfred Lumala; Ayoub Kakande; Paddy Kafeero; Edward Ssemwanga; Robert Asaba; Joseph Mugisha; Benjamin F Pierce; Robin J Shattock; Pontiano Kaleebu; Eugene Ruzagira
Journal:  Int J Environ Res Public Health       Date:  2021-06-30       Impact factor: 3.390

9.  Perceptions of Barriers to and Facilitators of Participation in Health Research Among Transgender People.

Authors:  Ashli A Owen-Smith; Cory Woodyatt; R Craig Sineath; Enid M Hunkeler; La Tasha Barnwell; Ashley Graham; Rob Stephenson; Michael Goodman
Journal:  Transgend Health       Date:  2016-10-01

10.  Cancer Health Literacy and Willingness to Participate in Cancer Research and Donate Bio-Specimens.

Authors:  Margarita Echeverri; David Anderson; Anna María Nápoles; Jacqueline M Haas; Marc E Johnson; Friar Sergio A Serrano
Journal:  Int J Environ Res Public Health       Date:  2018-09-24       Impact factor: 3.390

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