title: Obtaining family consent for participation in Alzheimer's research in a Cuban-American population: strategies to overcome the barriers.
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.
authors.affiliation: University of Miami School of Nursing, Coral Gables, Florida, USA.
authors.forename: C L
authors.initials: CL
authors.lastname: Williams
authors.forename: R
authors.initials: R
authors.lastname: Tappen
authors.forename: C
authors.initials: C
authors.lastname: Buscemi
authors.forename: R
authors.initials: R
authors.lastname: Rivera
authors.forename: J
authors.initials: J
authors.lastname: Lezcano
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D000544:Alzheimer Disease / Q000208:ethnology / Q000523:psychology / Q000534:rehabilitation*; D003462:Cuba / Q000208:ethnology; D015444:Exercise; D005260:Female; D006630:Hispanic or Latino / Q000523:psychology*; D006707:Homes for the Aged; D006801:Humans; D007258:Informed Consent / Q000331:legislation & jurisprudence*; D007872:Legal Guardians / Q000523:psychology; D008297:Male; D016743:Mental Competency / Q000331:legislation & jurisprudence*; D009735:Nursing Homes; D011368:Professional-Family Relations; D012106:Research; D012803:Sick Role