Literature DB >> 25742666

Contrasting views of risk perception and influence of financial compensation between adolescent research participants and their parents.

Lori Wiener1, Adrienne Viola2, Benjamin S Wilfond3, David Wendler4, Christine Grady5.   

Abstract

U.S. regulations governing pediatric research do not specify the assent process. To identify best practices, it is important to examine parents' and adolescents' views. The present study focuses on parents' and adolescents' views regarding possible research risks and the influence of financial compensation on their willingness to accept research procedures. Interviews were conducted with 177 adolescents participating in clinical research for a medical or psychiatric illness, or as healthy volunteers, and a parent. Significant discordance was found between how bothered the teen would feel from research-related side effects and procedures compared with parental report. Most teens were willing to accept non-beneficial procedures without compensation. Payment had significantly greater influence on healthy volunteers and their parents compared with those with a medical or psychiatric illness. Discordance between adolescent and parental views about risks recommends obtaining direct input from adolescents during the assent process. Modest payments should not raise concerns of undue inducement, especially in teens with pre-existing conditions.
© The Author(s) 2014.

Entities:  

Keywords:  assent; decision-making; health status; medical; payment; psychiatric; teens

Mesh:

Year:  2014        PMID: 25742666      PMCID: PMC5533159          DOI: 10.1177/1556264614563249

Source DB:  PubMed          Journal:  J Empir Res Hum Res Ethics        ISSN: 1556-2646            Impact factor:   1.742


  30 in total

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Review 5.  Implications of the Patient Self-Determination Act: guidelines for involving adolescents in medical decision making.

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Authors:  Irma M Hein; Pieter W Troost; Robert Lindeboom; Marc A Benninga; C Michel Zwaan; Johannes B van Goudoever; Ramón J L Lindauer
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8.  Youth risk behavior surveillance - United States, 2011.

Authors:  Danice K Eaton; Laura Kann; Steve Kinchen; Shari Shanklin; Katherine H Flint; Joseph Hawkins; William A Harris; Richard Lowry; Tim McManus; David Chyen; Lisa Whittle; Connie Lim; Howell Wechsler
Journal:  MMWR Surveill Summ       Date:  2012-06-08

9.  Empirically-derived Knowledge on Adolescent Assent to Pediatric Biomedical Research.

Authors:  David G Scherer; Janet L Brody; Robert D Annett; Charles Turner; Jeanne Dalen; Yesel Yoon
Journal:  AJOB Prim Res       Date:  2013

10.  "...because I am something special" or "I think I will be something like a guinea pig": information and assent of legal minors in clinical trials--assessment of understanding, appreciation and reasoning.

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Journal:  Child Adolesc Psychiatry Ment Health       Date:  2009-01-28       Impact factor: 3.033

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  3 in total

1.  Attitudes of Mothers Regarding Willingness to Enroll Their Children in Research.

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Journal:  J Empir Res Hum Res Ethics       Date:  2020-06-18       Impact factor: 1.742

2.  Caregiver Perspectives on Patient Participation in Biological Pediatric Cancer Research.

Authors:  Nicole E Kendel; Jennifer A Belsky; Joseph R Stanek; Keri A Streby; Nilay Shah
Journal:  Children (Basel)       Date:  2022-06-16

3.  A Malawi guideline for research study participant remuneration.

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