Obtaining family consent for participation in Alzheimer's research in a Cuban-American population: Strategies to overcome the barriers Article

Williams, CL, Tappen, R, Buscemi, C et al. (2001). Obtaining family consent for participation in Alzheimer's research in a Cuban-American population: Strategies to overcome the barriers . 16(3), 183-187. 10.1177/153331750101600312

cited authors

  • Williams, CL; Tappen, R; Buscemi, C; Rivera, R; Lezcano, J

fiu authors

abstract

  • Cultural values and beliefs affect family attitudes toward participation in research. Significant resistance to allowing their elders with dementia to participate in clinical research was encountered in Cuban-American families. These families expressed concern about disturbing the elder's comfort (tranquilidad) and solitude (soledad). Furthermore, most believed that intervention would be futile. Feelings of guilt associated with nursing home placement may have been exacerbated by the suggestion that active intervention could be effective. Strategies to overcome these barriers included reduced emphasis on the potential superiority of the intervention to be tested, reassurance that contact with research staff was usually appreciated by participants, arrangements to talk with the family as a group about the study, and increased use of Spanish-language consent forms.

publication date

  • January 1, 2001

Digital Object Identifier (DOI)

start page

  • 183

end page

  • 187

volume

  • 16

issue

  • 3