Enacting Care: Successful recruitment, retention, and compliance of women in HIV/AIDS medical research

Women and AIDS: Negotiating Safer Practices, Care, and Representation

Volumn , Issue , 2014, Pages 181-207

  Roth, Nancy L ^a   Nelson, Myra Shoub ^b   Collins, Carol ^b   Emmons, Pamela ^c   Alderson, Mary ^d   Hatcher, Frank ^e   Nabrit Stephens, Barbara ^d   South, Mary Ann ^e  

^a HOFFMANN LA ROCHE INC   (United States)

^b Rutgers University   (United States)

^c Meharry/Vanderbilt AIDS Clinical Trials Unit ^*  (United States)

^d Project SHARE   (Canada)

^e MEHARRY MEDICAL COLLEGE   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 0003142044     PISSN: None     EISSN: None     Source Type: Book    
DOI: None     Document Type: Chapter

References (49)

1. Allen, M. (1994). The dilemma for women of color in clinical trials. JAMWA, 49(4), 105-109.
2. Besch, C. (1995). Compliance in clinical trials. AIDS, 9(1), 1-10.
3. Bishop, G.D., Alva, A.L., Contu, L., and Rittiman, T.K. (1991). Responses to persons with AIDS: Fear of contagion or stigma. Journal of Applied Social Psychology, 21, 1877-1888.
4. Blackwell, B. (1975). Drug therapy: Patient compliance. New England Journal of Medicine, 289 (5), 249-252.
5. Brown, L. (1993). Enrollment of drug abusers in HIV clinical trials: A public health imperative for communities of color. Journal of Psychoactive Drugs, 25(1), 45-52.
6. Burgoon, J.K., Pfau, M., Parrott, R., Birk, T., Coker, R., and Burgoon, M. (1987). Relational communication, satisfaction, compliance-gaining strategies, and compliance in communication between physicians and patients. Communication Monographs, 54, 307-324.
7. Capella, J. (1987). Interpersonal communication: Definitions and fundamental questions. In Berger, C. and Chaffee, S. (Eds.), Handbook of Communication Science, 184-238. Newbury Park, CA: Sage.
8. CDC. (1995). First 500,000 AIDS Cases-United States, 1995. Morbidity and Mortality Weekly Report, 44 (46), 849-853.
9. Chodorow, N. (1990). What is the relationship between psychoanalytic feminism and the psychoanalytic psychology of women? In D.L. Rhode (Ed.), Theoretical Perspectives on Sexual Difference, 114-130. New Haven, CT: Yale University Press.
10. Cotton, D., Finkelstein, D., Weili, H., Feinberg, J. (1993). Determinants of accrual of women to a large multicenter clinical trials program of human immunodeficiency virus infection. Journal of Acquired Immune Deficiency Syndromes, 6(12), 1323-1328.
11. El-Sadr, W. and Capps, L. (1992). The challenge of minority recruitment in clinical trials for AIDS. JAMA, 267(1), 954-957.
12. Glaser, B. and Strauss, A. (1967). The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago: Aldine.
13. Haywood, L.J., deGuzman, M., Jackson, L., Venegas, J., and Blumfield, D. (1992). Patient recruitment for hospital- and clinic-based studies in the inner city. In Becker, D.M., Hill, D.R., Jackson, J.S., Levine, D.M., Stillman, F.A., and Weiss, S.M. (Eds.), Health Behavior Research in Minority Populations: Access, Design, and Implementation, 47-52. Bethesda, MD: N1H.
14. Hunter, C, Frelick, R., Feldman, A., Bavier, A., Dunlap, W., Ford, L. et al. (1987). Selection factors in clinical trials: Results from the community clinical oncology program patient log. Cancer Treatment Reports, 71(6), 559-565.
15. Johnson, K.M. and Arfken, C.L. (1992). Individual recruitment strategies in minority-focused research. In D.M. Becker, D.R. Hill, J.S. Jackson, D.M. Levine, F.A. Stillman, and S.M. Weiss (Eds.), Health Behavior Research in Minority Populations: Access, Design, and Implementation, 24-29. Bethesda, MD: N1H.
16. Jordan, J. (1991). Empathy, mutuality, and therapeutic change: Clinical implications of a relational model. In J. Jordan, A. Kaplan, J.B. Miller, I. Stiver, and J. Surrey (Eds.), Women's Growth in Connection: Writings from the Stone Center, 283-290. New York: The Guilford Press.
17. Kreps, G.L., O'Hair, D., and Clowers, M. (1994). The influences of human communication on health outcomes. American Behavioral Scientist, 38, 215-223.
18. Kroger, F. (1994). Toward a healthy public: Models, messages, and meaning. American Behavioral Scientist, 38(2), 215-233.
19. Marlink, R., Kanki, P., Thior, I., Travers, K., Eisen, G., Silby, T., Traore, I., Hsieh, C.C., Dia, M.C, and Gueye, E.H. (1994). Reduced rate of disease development after HIV-2 infection as compared to HIV-1. Science, 265, 1587-1590.
20. McCabe, M., Varricchio, C, and Padberg, R. (1994). Efforts to recruit the economically disadvantaged to national clinical trials. Seminars in Oncology Nursing, 10(2), 123-129.
21. McCarthy, C. (1994). Historical background and clinical trials involving women and minorities. Academic Medicine, 69(9), 695-698.
22. McCracken, G. (1988). The Long Interview. Newbury Park, CA: Sage.
23. Merkatz, R. and Junod, S. (1994). Historical background of changes in FDA policy on the study and evaluation of drugs in women. Academic Medicine, 69(9),703-707.
24. Merton, V. (1993). The exclusion of pregnant, pregnable, and once-pregnable people (a.k.a. women) from biomedical research. American Journal of Law & Medicine, 19(4), 369-451.
25. Millon-Underwood, S., Sanders, E., and Davis, M. (1993). Determinants of participation in state-of-the-art cancer prevention, early detection/screening, and treatment trials among African Americans. Cancer Nursing, 16, 25-33.
26. Morrow, G., Hickok, J., and Burish, T. (1994). Behavioral Aspects of Clinical Trials: An Integrated Framework from Behavior Theory. Paper presented at the National Conference on Clinical Trials, Atlanta, 2676-2682.
27. Morse, E., Simon, P., Besch, C, and Walker, J. (1995). Issues of recruitment, retention, and compliance in community-based clinical trials with traditionally underserved populations. Applied Nursing Research, 8(1), 8-14.
28. Moser, M. and Lunn, J. (1982). Responses to Captopril and hydrochlorothiazide in black patients with hypertension. Clinical Pharmacology Therapy, 32, 307-312.
29. Nabrit-Stephens, B., Emmons, P., South, M., Estrada, J., Harris, R., Curry, A., and Hatcher, F. (1985). Challenges in Clinical Research Activities Among Minorities infected with Human Immunodeficiency Virus (HIV). Paper presented at the National Medical Association Scientific Assembly, Atlanta, GA.
30. Pollack, P.H., Lilie, S., and Vittes, M.E. (1993). On the nature and dynamics of social construction: The case of AIDS. Social Science Quarterly, 74, 123-33.
31. Ross, M.W., Jeffords, K., and Gold, J. (1994). Reasons for entry into and understanding of HIV/AIDS clinical trials: A preliminary study. AIDS Care, 6, 77-82.
32. Ryan, L. (1994). Reasons for Entry into Anti-V Trials. Manuscript submitted for publication.
33. Ryan, L. (1995). "Going Public" and "Watching Sick People"-the Clinic Setting as a Factor in the Experiences of Gay Men Participating in AIDS Clinical Trials. AIDS Care, 7 (2), 147-158.
34. Schain, W. (1994). Barriers to clinical trials-Part II: Knowledge and attitudes of potential participants. Paper presented at the National Conference on Clinical Trials, Atlanta, 2666-2671.
35. Schegloff, E. (1988). Between micro and macro: Contexts and other connections. In J. Alexander, B. Geissen, R. Munch, and N. Smelser (Eds.), The Macro-Micro Link, 207-234. Berkeley: University of California Press.
36. Schmucker, D. and Vessel, E. (1993). Underrepresentation of women in clinical drug trials. Clinical Pharmacology & Therapeutics, 54, 11-15.
37. Schubert, P. and Lionberger, L. (1995). Mutual connectedness: A study of nurse-client interaction. Journal of Holistic Nursing, 13(2), 102-116.
38. Scott-Jones, D. (1993). Ethical Issues in Reporting and Referring in Research with Minority and Low-Income Populations. Paper presented at the biennial meeting of the Society for Research in Child Development, New Orleans, LA.
39. Shillitoe, R. and Christie, M. (1990). Psychological approaches to the management of chronic illness: The example of diabetes mellitus. In P. Bennett, J. Weinman, and P. Spurgeon (Eds.), Current Developments in Health Psychology, 177-208. Chur, Switzerland: Harwood Academic Publishers.
40. Spradley, J.P. (1979). The Ethnographic Interview. Orlando, FL: Holt, Rinehart & Winston.
41. Strauss, A.L., Corbin, J., Fagerhaugh, S., Glaser, B., Maines, D., Suczek, B., and Wiener, CL. (1984). Chronic Illness and the Quality of Life, (second edition). St. Louis, MO: Mosby Company.
42. Surrey, J.L. (1991). Relationship and empowerment. In J. Jordan (Ed.), Women's Growth in Connection: Writings from the Stone Center, 162-180. New York: The Guilford Press.
43. Thomas, C, Pinto, H., Roach, M., and Vaughn, C. (1994). Participation in clinical trials: Is it state-of-the-art treatment for African Americans and other people of color? Journal of the National Medical Association, 86(3), 1 77-182.
44. Thome, S. (1990). Mothers with chronic illness: A predicament of social construction. Health Care for Women International, 11, 209-221.
45. Wachtel, T., Piette, J., Mor, V., Stein, M., Fleishman, J., and Carpenter, C. (1992). Quality of life in persons with human immunodeficiency virus infection: Measurement by the medical outcomes study instrument. Annals of Internal Medicine, 116 (2), 129-137.
46. Washington, H. (1994). Human guinea pigs. Emerge, October, 24-35.
47. Weijts, W. (1994). Responsible health communication: Taking control of our lives. American Behavioral Scientist, 38(2), 257-270.
48. Wermeling, D. and Selwitz, A. (1993). Current issues surrounding women and minorities in drug trials. The Annals of Pharmacotherapy, 27, 904-910.
49. Woody, G., Metzger, D., and Mulvaney, F. (1994). Preparations for AIDS vaccine trials: Recruitment and retention of in- and out-of-treatment injection drug users. AIDS Research and Human Retroviruses, 10, (supplement 2), 197-199.