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J Natl Med Assoc. 2006 January; 98(1): 18–27.
PMCID: PMC2594797

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

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.

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Selected References

These references are in PubMed. This may not be the complete list of references from this article.
  • Shavers VL, Lynch CF, Burmeister LF. Factors that influence African-Americans' willingness to participate in medical research studies. Cancer. 2001 Jan 1;91(1 Suppl):233–236. [PubMed]
  • Shavers-Hornaday VL, Lynch CF, Burmeister LF, Torner JC. Why are African Americans under-represented in medical research studies? Impediments to participation. Ethn Health. 1997 Mar-Jun;2(1-2):31–45. [PubMed]
  • 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. [PubMed]
  • Shavers VL, Lynch CF, Burmeister LF. 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]
  • 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]
  • Thompson EE, Neighbors HW, Munday C, Jackson JS. 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. [PubMed]
  • Williams DH. The epidemiology of mental illness in Afro-Americans. Hosp Community Psychiatry. 1986 Jan;37(1):42–49. [PubMed]
  • 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. [PubMed]
  • 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]
  • Freimuth VS, Quinn SC, Thomas SB, 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. [PubMed]
  • Cox JD. Paternalism, informed consent and Tuskegee. Int J Radiat Oncol Biol Phys. 1998 Jan 1;40(1):1–2. [PubMed]
  • Link BG, Phelan JC, Bresnahan M, Stueve A, Pescosolido BA. Public conceptions of mental illness: labels, causes, dangerousness, and social distance. Am J Public Health. 1999 Sep;89(9):1328–1333. [PubMed]
  • Angermeyer Matthias C, Matschinger Herbert. Public beliefs about schizophrenia and depression: similarities and differences. Soc Psychiatry Psychiatr Epidemiol. 2003 Sep;38(9):526–534. [PubMed]
  • Angermeyer MC, 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. [PubMed]
  • Penn DL, Guynan K, Daily T, Spaulding WD, Garbin CP, Sullivan M. Dispelling the stigma of schizophrenia: what sort of information is best? Schizophr Bull. 1994;20(3):567–578. [PubMed]
  • Penn DL, Kommana S, Mansfield M, Link BG. Dispelling the stigma of schizophrenia: II. The impact of information on dangerousness. Schizophr Bull. 1999;25(3):437–446. [PubMed]
  • Weiner B, Perry RP, Magnusson J. An attributional analysis of reactions to stigmas. J Pers Soc Psychol. 1988 Nov;55(5):738–748. [PubMed]
  • Gil EF, Bob S. Culturally competent research: an ethical perspective. Clin Psychol Rev. 1999 Jan;19(1):45–55. [PubMed]

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