Skip to main content
PMC home page
Journal of the National Medical Association logoLink to Journal of the National Medical Association
. 2006 Jan;98(1):18–27.

African-American community attitudes and perceptions toward schizophrenia and medical research: an exploratory study.

Lynnae A Hamilton 1, Muktar H Aliyu 1, Paul D Lyons 1, Roberta May 1, Charlie L Swanson Jr 1, Robert Savage 1, Rodney C P Go 1
PMCID: PMC2594797  PMID: 16532974

Abstract

INTRODUCTION: Ensuring adequate representation of all demographic groups in medical research is necessary in order to ensure that the benefits associated with participation are equitably shared. Mental health research is unique in that the stigma associated with mental illness, such as schizophrenia, further hinders participation. Using focus groups, we set out to explore the attitudes and views of African Americans with regard to schizophrenia and medical research. METHODS: Four focus group discussions were conducted, with 23 participants divided into two groups of working and retired adults, and two groups of full- and part-time students selected from inner-city residents of Birmingham, AL, and surrounding counties. Data obtained were analyzed using the content analysis method. RESULTS: Diverse views were expressed about the cause of mental illness, and much of this was influenced by cultural beliefs. There was considerable misunderstanding of schizophrenia, and the majority of participants described the disease in terms of positive symptoms only. Whereas for older participants the Tuskegee syphilis study experience was an important factor in their reluctance to participate in medical research, younger participants expressed no knowledge of the study. Among younger participants an assumed level of social distrust was evident, with prominent fear of participating in research that employs physically intrusive methods. CONCLUSION: The provision of accurate information through trusted community sources and open dialogue will help to dispel myths, correct faulty assumptions and increase African-American participation in schizophrenia research.

Full text

PDF
27

Selected References

These references are in PubMed. This may not be the complete list of references from this article.

  1. Angermeyer M. C., Matschinger H. The effect of violent attacks by schizophrenic persons on the attitude of the public towards the mentally ill. Soc Sci Med. 1996 Dec;43(12):1721–1728. doi: 10.1016/s0277-9536(96)00065-2. [DOI] [PubMed] [Google Scholar]
  2. Angermeyer Matthias C., Matschinger Herbert. Public beliefs about schizophrenia and depression: similarities and differences. Soc Psychiatry Psychiatr Epidemiol. 2003 Sep;38(9):526–534. doi: 10.1007/s00127-003-0676-6. [DOI] [PubMed] [Google Scholar]
  3. Bates Benjamin R., Harris Tina M. The Tuskegee Study of Untreated Syphilis and public perceptions of biomedical research: a focus group study. J Natl Med Assoc. 2004 Aug;96(8):1051–1064. [PMC free article] [PubMed] [Google Scholar]
  4. Corbie-Smith Giselle, Thomas Stephen B., St George Diane Marie M. Distrust, race, and research. Arch Intern Med. 2002 Nov 25;162(21):2458–2463. doi: 10.1001/archinte.162.21.2458. [DOI] [PubMed] [Google Scholar]
  5. Cox J. D. Paternalism, informed consent and Tuskegee. Int J Radiat Oncol Biol Phys. 1998 Jan 1;40(1):1–2. doi: 10.1016/s0360-3016(97)00831-6. [DOI] [PubMed] [Google Scholar]
  6. Freimuth V. S., Quinn S. C., Thomas S. B., Cole G., Zook E., Duncan T. African Americans' views on research and the Tuskegee Syphilis Study. Soc Sci Med. 2001 Mar;52(5):797–808. doi: 10.1016/s0277-9536(00)00178-7. [DOI] [PubMed] [Google Scholar]
  7. Gil E. F., Bob S. Culturally competent research: an ethical perspective. Clin Psychol Rev. 1999 Jan;19(1):45–55. doi: 10.1016/s0272-7358(98)00019-1. [DOI] [PubMed] [Google Scholar]
  8. Link B. G., Phelan J. C., Bresnahan M., Stueve A., Pescosolido B. A. Public conceptions of mental illness: labels, causes, dangerousness, and social distance. Am J Public Health. 1999 Sep;89(9):1328–1333. doi: 10.2105/ajph.89.9.1328. [DOI] [PMC free article] [PubMed] [Google Scholar]
  9. Lukens Ellen P., Thorning Helle, Lohrer Steven. Sibling perspectives on severe mental illness: reflections on self and family. Am J Orthopsychiatry. 2004 Oct;74(4):489–501. doi: 10.1037/0002-9432.74.4.489. [DOI] [PubMed] [Google Scholar]
  10. Penn D. L., Guynan K., Daily T., Spaulding W. D., Garbin C. P., Sullivan M. Dispelling the stigma of schizophrenia: what sort of information is best? Schizophr Bull. 1994;20(3):567–578. doi: 10.1093/schbul/20.3.567. [DOI] [PubMed] [Google Scholar]
  11. Penn D. L., Kommana S., Mansfield M., Link B. G. Dispelling the stigma of schizophrenia: II. The impact of information on dangerousness. Schizophr Bull. 1999;25(3):437–446. doi: 10.1093/oxfordjournals.schbul.a033391. [DOI] [PubMed] [Google Scholar]
  12. Shavers-Hornaday V. L., Lynch C. F., Burmeister L. F., Torner J. C. Why are African Americans under-represented in medical research studies? Impediments to participation. Ethn Health. 1997 Mar-Jun;2(1-2):31–45. doi: 10.1080/13557858.1997.9961813. [DOI] [PubMed] [Google Scholar]
  13. Shavers V. L., Lynch C. F., Burmeister L. F. Factors that influence African-Americans' willingness to participate in medical research studies. Cancer. 2001 Jan 1;91(1 Suppl):233–236. doi: 10.1002/1097-0142(20010101)91:1+<233::aid-cncr10>3.0.co;2-8. [DOI] [PubMed] [Google Scholar]
  14. Shavers V. L., Lynch C. F., Burmeister L. F. Knowledge of the Tuskegee study and its impact on the willingness to participate in medical research studies. J Natl Med Assoc. 2000 Dec;92(12):563–572. [PMC free article] [PubMed] [Google Scholar]
  15. Stark Nancy, Paskett Electra, Bell Ronny, Cooper M. Robert, Walker Elizabeth, Wilson Alma, Tatum Cathy. Increasing participation of minorities in cancer clinical trials: summary of the "Moving Beyond the Barriers" Conference in North Carolina. J Natl Med Assoc. 2002 Jan;94(1):31–39. [PMC free article] [PubMed] [Google Scholar]
  16. Thompson E. E., Neighbors H. W., Munday C., Jackson J. S. 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 Oct;64(5):861–867. doi: 10.1037//0022-006x.64.5.861. [DOI] [PubMed] [Google Scholar]
  17. Weiner B., Perry R. P., Magnusson J. An attributional analysis of reactions to stigmas. J Pers Soc Psychol. 1988 Nov;55(5):738–748. doi: 10.1037//0022-3514.55.5.738. [DOI] [PubMed] [Google Scholar]
  18. Williams D. H. The epidemiology of mental illness in Afro-Americans. Hosp Community Psychiatry. 1986 Jan;37(1):42–49. doi: 10.1176/ps.37.1.42. [DOI] [PubMed] [Google Scholar]

Articles from Journal of the National Medical Association are provided here courtesy of National Medical Association

RESOURCES