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American Journal of Alzheimer's Disease and Other Dementias®
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Obtaining family consent for participation in Alzheimer's research in a Cuban-American population: Strategies to overcome the barriers

Christine L. Williams, RN, DNSc, CS

University of Miami School of Nursing, Coral Gables, Florida; Geriatric Research and Education Center, Department of Veterans Affairs, Miami, Florida

Ruth Tappen, EdD, RN, FAAN

Florida Atlantic University College of Nursing, Boca Raton, Florida

Charles Buscemi, RN, MSN

Richard Rivera, RN, BSN

Jennifer Lezcano, RN, BSN

University of Miami School of Nursing, Coral Gables, Florida

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.

Key Words: Alzheimer's disease • Cuban-Americans • diversity • exercise • intervention studies • multicultural issues • research study participation and recruitment

American Journal of Alzheimer's Disease and Other Dementias®, Vol. 16, No. 3, 183-187 (2001)
DOI: 10.1177/153331750101600312
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[Abstract] [PDF]


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