Measuring Discomfort in Health Research Relative to Everyday Events and Routine Care: An Application to Sexual and Gender Minority Youth

Kathryn Macapagal*, Emily Bettin, Margaret Matson, Ashley Kraus, Celia B. Fisher, Brian Mustanski

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

3 Scopus citations

Abstract

Purpose: Understanding how sexual and gender minority (SGM) youth's comfort with research procedures compares to their comfort with everyday experiences and routine health care can help calibrate decisions about whether a study meets minimal risk criteria. We sought to quantify SGM adolescents' comfort with sexual health research relative to everyday events and activities often cited as benchmarks of minimal risk. Methods: A total of 616 SGM adolescents in the United States (mean age = 15.7 years, 41.7% racial/ethnic minority) completed online survey questions assessing sexual behavior, SGM identity, and a 53-item Measure of Adolescent Comfort with Clinical, Research, and Everyday Events that assessed comfort on a 7-point scale (1 = extremely uncomfortable and 7 = extremely comfortable). Results: The Everyday Events for Adolescents domain had the lowest mean comfort score (M = 3.49, standard deviation [SD] =.58) and was significantly lower than the Routine Medical and Psychological Tests domain (M = 4.43, SD =.92) and the HIV/Sexual Health Research Procedures domain (M = 4.19, SD =.94). Eleven of 17 items on the HIV/Sexual Health Research Procedures domain were ranked as more comfortable than a neutral rating of “neither comfortable nor uncomfortable.” Higher levels of parental acceptance predicted greater levels of comfort across all four domains of the Measure of Adolescent Comfort with Clinical, Research, and Everyday Events. Participants who were out to their parents expressed greater comfort with both SGM Identity and Sexual Health–related procedures and events as well as HIV/Sexual Health Research Procedures. Conclusions: Overall participants expressed equal or more comfort with research procedures than with everyday life experiences. These findings indicate that common sexual health research procedures may meet minimal risk criteria among SGM adolescent populations.

Original languageEnglish (US)
Pages (from-to)594-601
Number of pages8
JournalJournal of Adolescent Health
Volume64
Issue number5
DOIs
StatePublished - May 2019

Keywords

  • Adolescent sexual behavior
  • Adolescent sexual health
  • HIV/AIDS
  • Research ethics

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Public Health, Environmental and Occupational Health
  • Psychiatry and Mental health

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