Abstract
Individuals from minority groups in the United States have been found less likely than non-Hispanic whites to participate in research studies. The recruitment and retention of individuals from minority groups has also proved challenging. We describe the challenges that we encountered in recruiting and retaining a sample of severely mentally ill Mexican and Puerto Rican ethnicity for a study of the context of HIV risk. We recruited women in San Diego County, California and northeastern Ohio who were between the ages of 18 and 50 and who had diagnoses of schizophrenia, bipolar disorder, or major depression. We identified challenges to recruitment and retention at the macro, mediator, and micro levels. We were able to retain 81.1% of the Puerto Rican cohort and 26.7% of the Mexican cohort over a 5-year period. The vast majority of barriers to recruitment and retention within the Puerto Rican cohort occurred at the micro (individual) level. Macro level barriers occurred more frequently and impacted retention to a greater extent within the cohort of Mexican women. Our experience underscores the importance of outreach to the community and the interaction between staff and individual participants. Diverse strategies are required to address the impact of migration on follow-up, which may vary across groups.
Similar content being viewed by others
References
Murry VM, Kotchick BA, Wallace S et al. Race, culture, and ethnicity: Implications for a community intervention. J Child Fam Stud 2003;13:81–99.
Atwood JR, Haase J, Reesmcgee S et al. Reasons related to adherence in community-based field studies. Patient Educ Couns 1992;19:251–259.
Gilliss CL, Lee KA, Gutierrez Y. Recruitment and retention of healthy minority women into community-based longitudinal research. J Womens Health Gend Based Med 2001;10:77–85.
Sobell MB, Brochu S, Sobell LC et al. Alcohol treatment outcome evaluation methodology: State of the art 1980–1984. Addict Behav 1987;12:113–128.
Morrissey JP, Dennis DL. Homelessness and Mental Illness: Toward the Next Generation of Research Studies. Rockville, Maryland: National Institute of Mental Health; 1990.
Thompson EE, Neighbors HW, Munday C et al. Recruitment and retention of African American patients for clinical research: An exploration of response rates in an urban psychiatric hospital. J Consult Clin Psychol 1996;64(5):861–867.
Levkoff S, Sanchez H. Lessons learned about minority recruitment and retention from the Centers on Minority Aging and Health Promotion. Gerontologist 2003;43(1):18–26.
Hough RL, Tarke H, Renker V. Recruitment and retention of homeless mentally ill participants in research. J Consult Clin Psychol 1996;64(5):881–891.
Twitchell GR, Hertzong CA, Klein JL et al. The anatomy of a follow-up. Br J Addict 1992;87:1327–1333.
Cooley MA, Sarna L, Brown JK et al. Challenges of recruitment and retention in multisite clinical research. Cancer Nurs 2003;26(5):376–385.
Williamson GR, Prosser S. Action research: Politics, ethics, and participation. J Advanced Nurs Res 2002;40:587–593.
Rog D. Engaging Homeless Persons with Mental Illness into Treatment. Alexandria, Virginia: National Mental Health Association;1988.
Blankertz LE, Cnaan RA, White K et al. Outreach efforts with dually diagnosed homeless persons. Families in Society: The Journal of Contemporary Human Services 1990;71:387–397.
Johnson S, Mebane-Sims I, Hogan PE. Recruitment of postmenopausal women in the PEPI trial. Control Clin Trials 1995;16:20S–35S.
Cosgrove N, Borhani NO, Bailey G. Massmailing and staff experience in a total recruitment program for a clinical trial: The SHEP experience. Control Clin Trials 1999;19:133–148.
Wolf LE, Zandecki J, Lo B. The certificate of confidentiality application: A view from the NIH Institutes. IRB: Ethics and Human Research 2004;26(1):14–18.
Armistead LP, Clark H, Barber CN et al. Participant retention in the Parents Matter! Program: Strategies and outcome. J Child Fam Stud 2004;13(1):67–80.
Daunt DJ. Ethnicity and recruitment rates in clinical research studies. Appl Nurs Res 2003;16(3):189–195.
Vander Stoep A. Maintaining high subject retention in follow-up studies of children with mental illness. J Child Fam Stud 1999;8(3):305–318.
Baker L, Lavender T, Tincello D. Factors that influence women’s decisions about whether to participate in research: An exploratory study. Birth 2005;32(1):60–66.
Juntunen A, Hwalek M, Neale AV. Tracking and interviewing clients at risk for HIV and substance abuse in a Latino community. Eval Program Plann 1999;22:305–312.
Albrecht L: 5 illegal immigrants arrested;All under court order to leave US;Agents took kids from buses. Modesto Bee, A10, April 4, 2006.
Associated Press: Record number of illegals deported from US Nov. 17, 2004. Last accessed Nov. 17, 2004;Available at http://www.msnbc.msn.com/ id/6510134; .
Carter SA: Patrols persist amid criticism. Inland Valley Daily Bulletin (Ontario, CA), Oct. 16, 2005.
McNary S: Endgame; Border burden. Press Enterprise (Riverside, CA), A13, Oct. 30, 2005.
Border Protection, Antiterrorism, and Illegal Immigration Control Act of 2005, H.R. 4437.
Gauthier M, Clarke W. Gaining and sustaining minority participation in longitudinal research projects. Alzheimer Dis Assoc Disord 1999;13(Suppl. 1):S29–S33.
Johnson K, Arfken C: Individual Recruitment Strategies in Minority-Focused Research. In Health Behavior Research in Minority Populations: Access, Design, and Implementation [Pub. No. 92–2965] (pp. 24–29). Rockville, Maryland: National Institutes of Health;1992 .
Newberg S, Holland A, Pearce L. Motivation of subjects to participate in a research trial. Appl Nurs Res 1992;5:89–104.
Roth N, Nelson MS, Collins C. Enacting care: Successful recruitment, retention, compliance of women in HIV/AIDS medical research, in In: Roth N, Fuller L., eds. Women and AIDS: Negotiating Safer Practices, Care, and Representation Binghamton, New York: The Harrington Press/The Haworth Press; 1998: 181–207.
Martin PA. Recruitment of research subjects. Appl Nurs Res 1995;8:50–54.
Stirman SW, Derubeis RJ, Crits-Chrisoph P et al. Can the randomized controlled trial literature generalize to nonrandomized patients? J Consult Clin Psychol 2005;73(1):127–135.
Cooper LA, Gonzales JJ, Gallo KM et al. The acceptability of treatment for depression among African-American, Hispanic and white primary care patients. Medical Care 2003;41(4):479–489.
Tonnigan JS. Project Match treatment participation and outcome by self-reported ethnicity. Alcohol Clin Exp Res 2003;27(8):1340–4.
Miranda J, Lawson W, Escobar J. Ethnic minorities. Ment Health Serv Res 2000;4(4):231–237.
Ziguras SJ, Klimidais S, Lambert TJ et al. Determinants of antipsychotic medication compliance in a multicultural population. Commun Ment Health 2001;37(3):273–83.
Takeuchi DT, Sue S, Yeh M. Return rates and outcomes from ethnicity-specific mental health programs in Los Angeles. Am J Public Health 1995;85(5):638–643.
Snowden LR, Hu TW, Jerrill JM. Emergency care avoidance: Ethnic matching and participation in minority-serving programs. Community Ment Health J 1995;31(5):463–473.
Manderscheid RW, Barrett SA: Mental Health in the United States (DHHS Publication No. ADM 87-1518). Washington, D.C: US Government Printing Office; 1987.
Bjorkman T, Hansson L, Sandlund M. Outcomes of case management based on the strengths model compared to standard care. A randomized controlled trial. Soc Psychiatry Psychiatr Epidemiol 2002;37(4):147–152.
Buck PW, Alexander LB. Neglected voices: Consumers with serious mental illness speak about intensive case management. Adm Policy Ment Health 2005;33:470–481.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Loue, S., Sajatovic, M. Research with Severely Mentally Ill Latinas: Successful Recruitment and Retention Strategies. J Immigrant Minority Health 10, 145–153 (2008). https://doi.org/10.1007/s10903-007-9063-9
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10903-007-9063-9