Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2014 Oct;9(4):46-9.
doi: 10.1177/1556264614545037.

A New Measure of Research Participant Burden: Brief Report

Jennifer H Lingler  1 , Karen L Schmidt, Amanda L Gentry, Lu Hu, Lauren A Terhorst
Affiliations

A New Measure of Research Participant Burden: Brief Report

Jennifer H Lingler et al. J Empir Res Hum Res Ethics. 2014 Oct.

Abstract

Effective conceptualizations of research burden should address indirect burdens related to research duration, intensity, and invasiveness. Introducing the concept of perceived research burden, we developed, tested, and validated a new instrument, the Perceived Research Burden Assessment (PeRBA). Initial psychometric evaluation of PeRBA reveals good internal consistency, evidence of face validity, and acceptable convergent and discriminant validity.

PubMed Disclaimer

Figures

Figure 1
Figure 1. Conceptual Model of Role of Perceived Participant Burden in Recruitment and Retention
Note: RCT = randomized controlled trial; pt = patient; “Family” refers to relatives or close friends who may share in decision-making.
See this image and copyright information in PMC

References

    1. Areán PA, Alvidrez J, Nery R, Estes C, Linkins K. Recruitment and retention of older minorities in mental health services research. The Gerontologist. 2003;43(1):36–44. - PubMed
    1. Agarwal SK, Estrada S, Foster WG, Wall LL, Brown D, Revis ES, et al. What motivates women to take part in clinical and basic science endometriosis research? Bioethics. 2007;21(5):263–269. - PubMed
    1. Bradburn N. Health Survey Research Methods: Second Biennial Conference. Washington, DC: U.S. Government Printing Office; 1978. Respondent burden. (Williamsburg, VA)
    1. Brody JL, Annett RD, Scherer DG, Perryman ML, Cofrin KMW. Comparisons of adolescent and parent willingness to participate in minimal and aboveminimal risk pediatric asthma research protocols. Journal of Adolescent Health. 2005;37(3):229–235. - PMC - PubMed
    1. Brown DR, Topcu M. Willingness to participate in clinical treatment research among older African Americans and Whites. The Gerontologist. 2003;43(1):62–72. - PubMed

Publication types

LinkOut - more resources