Literature DB >> 19309450

Practical matters, rather than lack of trust, motivate non-participation in a long-term cohort trial.

Gert Helgesson1, Mats G Hansson, Johnny Ludvigsson, Ulrica Swartling.   

Abstract

OBJECTIVE: The objective of this study was to investigate the importance of trust in researchers and other reasons that participating parents, former participants, and non-participants had for participating, or not participating, in a longitudinal cohort study on prediction and development of diabetes in children. STUDY
DESIGN: A questionnaire addressing each of these groups, where respondents graded the importance of a set of listed reasons for participating/not participating, was randomly distributed to 2500 families in the All Babies in Southeast Sweden (ABIS) study region with children born between 1997 and 1999.
RESULTS: Lack of trust was not a central factor to a great majority of respondents who decided not to participate in the ABIS study or who later decided to opt out. Practical matters, like blood sampling and lack of time, were important factors to many more. Yet, four fifths of those who still participate in the ABIS study stated trust in the researchers to be an important factor to their initial decision to participate.
CONCLUSIONS: Trust in researchers may be a necessary prerequisite in order for people to be willing to participate in research, but practical matters such as time that has to be spent or pain involved in collecting blood were more important factors than lack of trust in explaining opt out in relation to the ABIS study.

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Mesh:

Year:  2009        PMID: 19309450     DOI: 10.1111/j.1399-5448.2008.00498.x

Source DB:  PubMed          Journal:  Pediatr Diabetes        ISSN: 1399-543X            Impact factor:   4.866


  8 in total

1.  Assessment of potential bias from non-participation in a dynamic clinical cohort of long-term childhood cancer survivors: results from the St. Jude Lifetime Cohort Study.

Authors:  Rohit P Ojha; S Cristina Oancea; Kirsten K Ness; Jennifer Q Lanctot; D Kumar Srivastava; Leslie L Robison; Melissa M Hudson; James G Gurney
Journal:  Pediatr Blood Cancer       Date:  2012-09-28       Impact factor: 3.167

2.  Psychometric properties of the Pediatric Testing Attitudes Scale-Diabetes (P-TAS-D) for parents of children undergoing predictive risk screening.

Authors:  Kenneth P Tercyak; Darren Mays; Suzanne Bennett Johnson; Johnny Ludvigsson; Ulrica Swartling
Journal:  Pediatr Diabetes       Date:  2013-06-14       Impact factor: 4.866

3.  Behavioral Science Research Informs Bioethical Issues in the Conduct of Large-Scale Studies of Children's Disease Risk.

Authors:  Kenneth P Tercyak; Ulrica Swartling; Darren Mays; Suzanne Bennett Johnson; Johnny Ludvigsson
Journal:  AJOB Prim Res       Date:  2013-01-01

4.  Enrollment experiences in a pediatric longitudinal observational study: The Environmental Determinants of Diabetes in the Young (TEDDY) study.

Authors:  Barbro Lernmark; Suzanne Bennett Johnson; Kendra Vehik; Laura Smith; Lori Ballard; Judy Baxter; Wendy McLeod; Roswith Roth; Tuula Simell
Journal:  Contemp Clin Trials       Date:  2011-03-17       Impact factor: 2.261

5.  Reasons for Staying as a Participant in the Environmental Determinants of Diabetes in the Young (TEDDY) Longitudinal Study.

Authors:  Barbro Lernmark; Kristian Lynch; Lori Ballard; Judith Baxter; Roswith Roth; Tuula Simell; Suzanne Bennett Johnson
Journal:  J Clin Trials       Date:  2012

6.  Participant Experiences in the Environmental Determinants of Diabetes in the Young Study: Common Reasons for Withdrawing.

Authors:  Barbro Lernmark; Kristian Lynch; Judith Baxter; Roswith Roth; Tuula Simell; Laura Smith; Ulrica Swartling; Suzanne Bennett Johnson
Journal:  J Diabetes Res       Date:  2015-11-22       Impact factor: 4.061

7.  Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland.

Authors:  Casey Lynnette Overby; Kristin A Maloney; Tameka DeShawn Alestock; Justin Chavez; David Berman; Reem Maged Sharaf; Tom Fitzgerald; Eun-Young Kim; Kathleen Palmer; Alan R Shuldiner; Braxton D Mitchell
Journal:  J Pers Med       Date:  2015-07-28

8.  «If you give them your little finger, they'll tear off your entire arm»: losing trust in biobank research.

Authors:  Lars Ursin; Borgunn Ytterhus; Erik Christensen; John-Arne Skolbekken
Journal:  Med Health Care Philos       Date:  2020-12
  8 in total

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