African-American Community Attitudes and Perceptions toward

African-American Community Attitudes andPerceptions toward Schizophrenia andMedical Research: An Exploratory StudyLynnae A. Hamilton, MA; Muktar H. Aliyu, MD, DrPH; Paul D. Lyons, MD, PhD; Roberta May, MA, CCRC;Charlie L. Swanson Jr, MD; Robert Savage, PhD; and Rodney C.P. Go, PhDSanta Barbara, California; Birmingham, Alabama; and Charlottesville, Virginia

Financial support. This study was supported by NIMH grant#ROI1MH66181-03 to Rodney Go, PhD.

Introduction. Ensuring adequate representation of all demo-graphic groups in medical research is necessary in order toensure that the benefits associated with participation areequitably shared. Mental health research is unique in thatthe stigma associated with mental illness, such as schizo-phrenia, further hinders participation. Using focus groups, weset out to explore the attitudes and views of African Ameri-cans with regard to schizophrenia and medical research.

Methods: Four focus group discussions were conducted,with 23 participants divided into two groups of working andretired adults, and two groups of fUll- and part-time studentsselected from inner-city residents of Birmingham, AL, andsurrounding counties. Data obtained were analyzed usingthe content analysis method.Results: Diverse views were expressed about the cause ofmental illness, and much of this was influenced by culturalbeliefs. There was considerable misunderstanding of schizo-phrenia, and the mjority of participants described the dis-ease in terms of positive symptoms only. Whereas for olderparticipants the Tuskegee syphilis study experience was animportant factor in their reluctance to participate in medicalresearch, younger participants expressed no knowledge ofthe study. Among younger participants an assumed level ofsocial distrust was evident, with prominent fear of participat-ing in research that employs physically intrusive methods.

Conclusion: The provision of accurate information throughtrusted community sources and open dialogue will help todispel myths, correct faulty assumptions and increaseAfrican-American participation in schizophrenia research.

Key words: Afncan Americahs U schizophrenia * research* attitudes J focus groups

2006. From Fielding Graduate University, Santa Barbara, CA (Hamilton);Department of Epidemiology (Aliyu, Go) and Department of Psychiatry (Lyons,May, Swanson Jr, Savage), University of Alabama at Birmingham, Birmingham,AL; and Department of Neurology, University of Virginia, Charlottesville, VA

(Lyons). Send correspondence and reprint requests for J Natl Med Assoc.2006;98:18-27 to: Muktar Aliyu MD, DrPH, Department of Epidemiology, Univer-sity of Alabama at Birmingham, CHSB 19 Room 403/Box 3, 933 19th St. S.,Birmingham AL 35294-2041; phone: (205) 996-2190; fax: (205) 996-2119; e-mail:[email protected]

INTRODUCTIONParticipant recruitment is an integral component

of clinical research, with proportional representationof all demographic groups being necessary to ensurethat any benefits associated with participation inmedical research are equitably shared. However, eth-nic minority groups are often not represented in med-ical research. In the United States, the nonrepresenta-tion of African Americans in medical research hasbeen attributed to a variety of reasons, including cul-tural barriers, limited knowledge of clinical trials, theeffects ofthe Tuskegee syphilis study, societal distrustof medical researchers, poor access to primary med-ical care, the perceived risks of minimally invasiveprocedures, as well as the paucity of data to design,implement and evaluate recruitment strategies.'-5

Apart from the stigma associated with mental ill-ness (which permeates all ethnic groups), additionalbarriers in mental health research in the African-American community are presented by unique fac-tors, including the negative attitudes toward psy-chotherapy and the historical manipulation ofmental illness to justify slavery.6'7 It is thereforeimportant to explore the perceptions and attitudes ofAfrican-American communities toward mental ill-ness research in order to design appropriate inter-ventions that will increase the likelihood of moreracially inclusive mental health research.

In the last two decades, focus groups have beenincreasingly used as a qualitative research methodand valuable data source.8 Utilizing small-groupdynamics and a more natural form ofcommunication,focus groups are useful for exploring attitudes, normsand opinions on sensitive topics within populations.9"'0Further, focus groups have been shown to be particu-larly useful among ethnic minority groups whose

18 JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION VOL. 98, NO. 1, JANUARY 2006

AFRICAN-AMERICAN ATTITUDES TO SCHIZOPHRENIA

members share similar personal experiences, beliefsand values.8"' The meaning of these experiences,beliefs and values may be compared across age andother socioeconomic variables.'2 The Project AmongAfrican Americans to Explore Risks for Schizophre-nia (PAARTNERS) is a multisite NIMH-funded proj-ect that seeks to identify the genes that predispose toschizophrenia among African-American families, ahitherto understudied population. As one of the aimsof the project, focus groups formulated by age andsocioeconomic demographics were conducted toexplore the attitudes, views and cultural beliefs ofAfrican Americans about schizophrenia and medicalresearch. By doing so, we seek to gain an understand-ing of the factors that influence African Americans'decisions to participate in schizophrenia research, aswell as improve recruitment and participation in ourstudy, while adding to the literature in this understud-ied area. Such an understanding will also serve as afoundation on which future studies can build uponand thereby contribute to narrowing the prevailingethnic disparities in mental health, especially throughcommunity education outreach efforts.

METHODSFocus Group Participants

Participants for the focus group study (23 partici-pants divided into four groups) were selected frominner-city residents of Birmingham, AL, and sur-rounding counties. One local community activistand one member of staff at the department of psy-chiatry, University of Alabama at Birmingham(UAB), selected a convenience sample based on thefollowing characteristics: a) race, b) age, c) level ofeducation, and d) employment status. In an attemptto access a range of opinions and attitudes across thelocal community, participants were selected fromneighborhood centers, local school systems, lawenforcement, social services and nursing agencies.

Twenty-three participants (nine males and 14females) were asked to participate in a research studyinvestigating perceptions and attitudes about schizo-phrenia and participation in biomedical research.Four focus groups of 5-7 participants were created,including men and women. Participants were of self-reported African-American descent, except for a sin-gle non-African American. However, in order to pres-ent a solely African-American perspective onschizophrenia and biomedical research, we decided toexclude observations by the non-African-Americanparticipant in our analysis and narrative.

Two groups (Fl and F2) included working andretired adults, ages 55-67 (mean age 63), while theother two groups (F3 and F4) included full-time andpart-time students, ages 17-27 (mean age 21). Four

of these participants had previous knowledge andassociation with other group members. There werefive participants in each of the first two groups (F 1and F2), seven members (four females) in the thirdgroup (F3) and six participants (two females) in thefourth group (F4). Groups Fl and F2 had a prepon-derance of female members (4 each).

Focus Group Format and ProceduresThe format for the focus groups was designed to

elicit candid beliefs, attitudes and opinions amongAfrican Americans about schizophrenia and medicalresearch. While the study sought answers to specificquestions, it was important to the researchers andthe process that participants feel secure. The studydesign sought to offer participants an equal opportu-nity to express their true feelings about sensitivethemes. In this regard, participants were informedthat all discussions will be confidential, that no per-sonal identifiers will be used in the transcripts andthat all information obtained will be strictly used forresearch purposes. The informed consent processwas conducted in a sensitive and respectful manner.

All focus groups were conducted by a femaleAfrican-American facilitator with training in focusgroup development, question design and groupprocess. Another staff member assisted with theaudio/video recording and notetaking. Two focusgroups were conducted at the Birmingham PublicLibrary and two groups at the department of psychia-try, UAB. All sessions were facilitated in a conferenceroom setting conducive to group discussions. Eachfocus group lasted 90 min. The PAARTNERS study isapproved by the Institutional Review Board for HumanUse at the University ofAlabama at Birmingham.

Study Instrument and DataCollection

The topic guide for the focus group sessions wasdeveloped in advance at UAB following a review ofthe

Table 1. Focus group questions/research themes

1. What is mental illness?2. What is schizophrenia?3. What are the cultural beliefs and stigmas

about schizophrenia?4. What are the feelings associated with being

in medical research?5. What is genetics?6. What would prevent your participation in

research?7. What would increase your participation in

research?8. What are the feelings associated with

"Blacks Only" research?

JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION VOL. 98, NO. 1, JANUARY 2006 19


literature, with input from investigators working on thePAARTNERS study and from community members ofa related ethics advisory committee. The guide consist-ed ofopen-ended questions and statements designed toexplore eight research themes established by our studyobjectives (Table 1). After the welcome, introductoryand opening comments, participants were asked aquestion and ample time was allowed for each partici-pant to provide an answer. Participants were instructedto be candid and open. The moderator then guided andfacilitated a detailed discussion of each question. Par-ticipant comments and responses were documentedand visually displayed using a flipchart for clarity andfurther discussion. At the end of each group session,participants were asked what they thought about theprocess and the information shared.

Complete confidentiality was maintained through-out the study. At the end of the focus group session, aluncheon at the Birmingham Museum ofArt was pro-vided for older participants; a $25 honorarium wasgiven to younger participants. Each focus group dis-cussion was audio- and/or videotaped with the con-sent of the participants. Detailed notes were also tak-en during each session. All audio and video tapesarising from the focus groups were independentlytranscribed by two people: the focus group facilitatorand a graduate student intern who had no formerknowledge ofthe contents. The focus group facilitatorverified written in-group participant responses fromvideotapes, audiocassettes and transcribed data.

Data AnalysisWe used the content analysis method"3 to analyze

data obtained. The transcripts ofthe focus group ses-sions were first coded and broken down into man-ageable categories on a variety of levels word(e.g., "stress"), word sense (accepted meaning of aword), phrase (e.g., "multiple personality"), sen-tence (e.g., "It is paranoia") and theme subject mat-ter (e.g., "cultural beliefs"). A numeric system wasused to code the research themes and subthemes. Wethen manually quantified and analyzed the presence,context, meanings and relationships of certain wordsand concepts and made inferences about the mes-sages conveyed. Each group constituted the unit ofanalysis, and analysis was undertaken in a group-by-group progression. A narrative was then developedthat described the meaning, properties, connectionsand dimensions of the data under those categories,and the significance of the messages containedwithin. The narrative followed the eight categoriesdelineated by our research themes (Table 1).

RESULTS

Views on the Causes of Mental IllnessThe first theme of the study was related to

exploring participants' beliefs regarding the cause ofmental illness. Across the groups, diverse viewswere expressed on what causes mental illness. Suchviews included references to environmental, organ-ic, biological/genetic and trauma-related factors.

Participants in the first two older age groupsexpressed the opinion that mental illness may becaused by a single factor or a combination of fac-tors. Environmental conditions proffered includedsituationally induced stress, social factors such aspoverty, reduced quality of life, poor nutrition andfanatical religious conviction. Biological factorswere thought to be the result of genetic inheritanceof a predisposition toward mental illness. Other fac-tors listed included organic illness of the brain,chemical imbalances in the brain as well as injuriousprenatal conditions and traumatic brain injury.

Since you have asked the question, I thinkstress can cause it. I mean, it has to be stress,because everybody is under stress. (F 1)

Military issues, situational issues. Religion,sometimes people become fanatically reli-gious, so involved .... (F 1)

Illnesses of the brain ... like encephalitis. (F2)

There were some differences in the responses ofthe last two groups of younger participants who alsomentioned alcohol and drug use (especially theextended use or "abuse" of these substances) ascauses of mental illness in addition to stressful lifesituations, such as peer pressure, bullying, childabuse (i.e., sexual, physical, verbal, neglect), andtrauma (i.e., emotional; witnessed or experienced):

Bullying or teasing, low self-esteem. (F4)

Substance abuse, like crack ... when it startsto affect you. (F3)

General Understanding ofSchizophrenia

All groups expressed confusion about termsassociated with mental disorders in general, andschizophrenia in particular. When described, schizo-phrenia was described in terms of positive symp-toms only. The illness was described in terms of anindividual having "two minds," paranoid thinking,abnormal behavior, being insane, deranged or pos-



sessing altered perception of reality. Collectively,these and other symptoms were thought to render anindividual "crazy".

Well, that is the term (crazy). It means out ofthe norm. You do not do what you normallydo. You do things that are totally strange. (F 1)

It is paranoia. Seeing and hearing things thatare not there. (F3)

It is just crazy! Paranoid. (F4)

A prominent theme across the groups was thenotion that schizophrenia meant "multiple" or "split"personalities. One participant (F3) suggested that inschizophrenia, where multiple personalities exist, thestronger personality was in control. Another memberof the same group (F3) suggested that it is similar to"when a man starts wearing a dress." Schizophreniawas also interpreted as the manifestation of "demonpossession" by older participants (F2).

Having a bad spirit... multiple personalities.(F2)

The demons ... when I was growing ifyouhad a mental disorder they used the word"crazy" and "split personality." Some say"crazy," you say "schizophrenia," what is thedifference? (F2)

Participants expressed disparate views about howthe disorder may affect intelligence. Whereas olderparticipants (Fl, F2) suggested those affected arehighly intelligent, younger participants (F3, F4)reported that persons with schizophrenia are of low-er intelligence. One of the participants indicated thatalthough persons with schizophrenia are intelligent,their mental abilities are restricted:

They only can function in this little realmright here. They can't come out of that. (F 1)

From the expression of younger respondents, thereis evidence that the majority (n=7) believed that schizo-phrenia was neither a medical disease nor was it inher-ited. They expressed the view that affected individualspossessed some level of control over expressed symp-toms. That is, behavioral manifestations of the diseasecould be turned on or off at will. One participantbelieved that affected individuals could heal them-selves of the disorder by "just working it out".

It is not a disease that you give to another.(F4)

It is only in the mind. They can choose theiractions ... it is under their control. (F4)

Something they can turn on and off. They cancontrol it. (F3)

They can heal themselves. They just need towork it out. (F4)

Some older participants (n=4; groups F1, F2)tended to disagree with this view, asserting the dis-order is a chronic disease that can be inherited andafflicted individuals are unaware of their abnormali-ty. They believed that these individuals cannot con-trol their symptoms and are not fully responsible fortheir actions.A consensus among participants across all

groups was that there is nothing positive about beingaffected with schizophrenia and that it has a chroniccourse, but is manageable when the individual iscompliant with medication. There was the belief thatan affected individual could not be healed ("cured")and must stay on prescribed medication. It was sug-gested that individuals could be functional if theyremained medication compliant. In addition, therewas agreement that individuals with schizophreniacan be successfully employed, be productive citi-zens, make decisions, vote and live independently.Despite these beliefs, three participants (groups F3and F4) believed that a population of individualswith schizophrenia is less desirable to live near asthey, collectively (such as a group home), representa liability to the neighborhood or community.

The majority of participants across the groups(n= 18) believed symptoms associated with the dis-ease can make affected individuals inherently dan-gerous and prone to violence. Specifically, a partici-pant explained this proneness to violence byproposing that paranoid symptoms render individu-als with schizophrenia naturally more sensitive tolife events and the actions of others.

They are dangerous and violent ... because ofparanoia. (F4)

They are more prone to violence because theyare more sensitive ... more likely to be over-reacting. (F3)

Cultural BeliefsCultural themes were expressed across topics and

groups. Spirituality and religiousness was prominent-ly expressed in all group discussions. A viewexpressed by younger members was that schizophre-nia is a taboo and not to be spoken of, while older par-



ticipants mentioned the notion of spell-casting (i.e.,voodoo) or being hexed (inhabited by an evil spirit):

It is not really spoken of. (F3)

It can be like voodoo and being hexed .... (F2)

Group participants recalled the biblical referenceto a man inhabited by an entity called "Legion"(meaning myriad evil spirits) who experiencedsymptoms and demonstrated self-destructive behav-iors similar to those associated with schizophrenia.The possessed man found relief only when Legionwas cast out by Jesus Christ. In contrast, there wasno reference among the younger participants (F3,F4) to the belief that schizophrenia is an affliction byGod or that it is a result of demonic possession.Although participants across all four groupsexpressed the view that full recovery from schizo-phrenia is not feasible, both older (Fl, F2) andyounger (F4) participants endorsed the view thatcertain religious beliefs could heal any condition.Among participants expressing pride in family

legacy and history, there was the feeling that mentalillness, including schizophrenia, would not diminishthe importance of affected family members or theirinclusion. Individuals with a mental illness aretherefore not shunned by such families or the localchurch. Older participants were more likely to holdsuch beliefs, asserting the importance of family.They did not endorse shame if they had an affectedmember in the family. In contrast, younger partici-pants were more likely to associate mental illnesswith shame. Specifically, they concurred with theidea of being ashamed of a family member afflictedwith schizophrenia. They were also more likely torestrict the individual's participation around imme-diate peers and at important social events.

I mean, ifmy friends were all coming over, Iwould feel shame... would not want them hang-ing out. But you still love them. Ifwe go to amovie or something, that would be OK. (F4)

Attitudes toward GeneticsParticipants expressed a superficial understand-

ing of genetics. In attempting to explain the meaningof the term, participants made reference to the terms"genes," "heredity" and "DNA" (e.g., chromo-somes, traits, hormones, types of cells). Geneticswas also related to the idea of cloning, genetic muta-tion, offspring, Siamese twins, blood type, thehuman body, body makeup, chemicals of the bodyand relation to parents. None of the participantsexpressed awareness that genetics is also a profes-

sional field of study.Regarding schizophrenia and genetics, the major-

ity of participants (n= 16) did not believe the condi-tion is passed from generation to generation. How-ever, some of the older participants (F 1) expressedthe belief that the disorder could be inherited orpassed on to offspring. One of the participants men-tioned the role of disparities in access to care asbeing responsible for any hereditary traits that maybe seen among African Americans:

When you are looking at the south and theAfrican-American community-many of ourrelatives come from the Deep South-andthere was the lack of adequate medical care... So, when you are talking genetic andheredity, it has passed on because black peo-ple are not receiving treatment and there is alack ofproper medical care ... (F 1)

Barriers to Research ParticipationWhile numerous views, concerns, beliefs and atti-

tudes emerged across the four groups, several keybarriers to participation in medical research emerged.

Tuskegee Syphilis Study. While discussing partici-pation in medical research, older group participantshad an immediate recall of the damaging experimentconducted on African Americans by the U.S. PublicHealth Service at Tuskegee Institute.14 Knowledgeabout the experiment was immediately expressed:

There's reluctance and because, well, I amgoing to say why you don't get as many ofusparticipating in medical research ... it isbecause of the Tuskegee experience and that'sembedded in us ... The first thing that comesto mind is that something is going to happento us, and we don't know ifthey are going toinduce us with such medicines that cause uspain and we don't heal. That's what happenedat Tuskegee and that's basically our thinking... My belief is this is why you don't get it ...because it's there, it keeps coming up ... (F 1)

As a result, the Tuskegee study experience was animportant factor for older participants in their reluc-tance to participate in medical research. To empha-size this reluctance, an example was given about arecent study that used a placebo in a medication tri-al. This was negatively viewed and perceived aswithholding vital medication for the research partic-ipants, a situation eerily reminiscent ofTuskegee:

Currently, I read a story in the newspaper thisweek that they are using a placebo to try . .. I



forget now exactly what the study was, but Iremember I immediately felt that the experi-ment itself, that ifyou are getting the placeboyou are slowly dying ... Regardless, the otherperson may be getting some real help, but youare being the guinea pig so that you are set fordeath ... (F2)

Distrust. Younger participants on the other hand,expressed no knowledge of the Tuskegee study. Butamong these participants, there was still an assumedlevel of social distrust of Caucasians referred to asthe "white-black issue." Older participants suggest-ed that although younger generations of AfricanAmericans may not be as directly aware of whatoccurred at Tuskegee, their reluctance to participatein mental illness research may be associated with thenotion that "little pictures have big ears," meaningthat younger people have learned fear and distrust ofCaucasians from overhearing the comments ofadults. There was an additional concern that even inmedical research performed by African-Americaninvestigators, skills of the researchers and staff maybe inferior to current medical standards. Fear, reluc-tance and distrust, therefore can be associated withboth Caucasian and African-American researchers.

Fear. As stated earlier, younger participants (F3,F4) expressed some reluctance to participate inmedical research, but for reasons not immediatelyassociated with the Tuskegee experiment. For theseindividuals, the type of research being conductedwas important. There was a more prominent generalfear of participating in research that employs specif-ic methods. Several participants across all groups(n= 11) expressed the view that they would not par-ticipate in any study (regardless of race/ethnicity ofthe researchers) that employed any type of physical-ly intrusive method (ingesting medications, blooddraws, injections, etc.) or involved potential expo-sure to a known infectious disease. Such individualswere willing to participate by only providing verbalinformation:

In my situation, I would be more reluctant totake something, you know, medically, into mybody-an injection or whatever, from anybodyas opposed to somebody telling me, "Come in,you just get to provide information. I am justtaking history from you." I would be much lessreluctant, from my standpoint, to just providehistory or medical history ... But, when some-body starts telling me, "Well, we want to try anew medication on you," then I start getting thesame feeling you all are saying ... this is goingto hurt me down the line-you know what areyou giving me . .. (F2)

There was some distrust of doctors, with one par-ticipant (F2) commenting that "... They would dounethical things for the greater good." For example,a participant (F3) negatively recalled a local herpesstudy and feared repeat tactics (i.e., unethical prac-tices). Another young participant (F4) would notparticipate in medical research under any condition.This participant's aversion was further described as asimple "fear of the unknown."

Perceptions of research results. Another factorperceived by participants as influencing their deci-sion to participate in research was the notion thatpublished outcomes are overwhelmingly negativeabout African Americans. This was evident in thefollowing remark where the participant expresseddoubts about statistics that show increased diseaserisks in African Americans compared to otherracial/ethnic groups:

And you know what disturbs me? When I seestatistics and it's always Afro Americans arethe number one of this ... You mean to tell methat we are the only people with diabetes? Weare the highest percent with hypertension? Weall breathe the same air but we ... That putssomething back there-brings back to mind,"Well OK, I'm studied and it's always I am theone in the forefront. No one else experiencesthese things but us." That puts something onyour mind ... (F2)

Although there was a consensus that informa-tion-only research was acceptable, a participantexpressed concern about what will be done withresults arising from black-only research:

I don't want to participate because I don'tknow what you are going to do with this, and Idon't know if it's going to negatively reflecton black people as a whole. People alwayswant to do research on black people and thenit ends up in The New York Times, and I don'twant to contribute to that ... (F1)

Rationales for ResearchParticipation

While several participants expressed fear or dis-trust of participating in research, some participantswere positive and encouraging. Positive reasons givenfor participating by older focus group membersincluded: 1) strong desire and willingness to help oth-ers, 2) to improve medical treatments, 3) to gain per-sonal knowledge or better understanding about anoutcome, condition or drug, and 4) to assist in fight-ing diseases prevalent among African Americans.



Among younger participants, positive reasons forparticipating in research included: 1) financialincentives; 2) a desire to help save lives or to helpothers; 3) personal interest, to gain personal knowl-edge or better understanding about an outcome, con-dition or drug; 4) religious commitment or expecta-tion to help others; 5) to specifically help a familymember or spouse; and 6) to gain a sense of fulfill-ment, expressed as "I'm making a difference."

Some participants expressed the view that theywould, in fact, participate without preconditions ordirect material or monetary gain. Altruism appeared tobe the reason here. Such individuals were willing toparticipate even ifthey or a loved one would not direct-ly benefit, provided their doing so would help others.

Preconditions and Prohibitive FactorsInfluencing Research Participation

Conditions perceived as important to researchparticipation by willing participants included factorssuch as if: 1) they were qualified to participate, 2)they were well informed about the study objectives,3) the study employed and made visible qualifiedAfrican-American principal investigators, 4) thestudy had oversight from a prominent authority orrecognized entity (e.g., American Medical Associa-tion, American Psychological Association or theNational Institutes of Health), 5) a significant finan-cial incentive was given, >$100.00, and 6) therewere no known adverse effects.

Some participants would not be willing to join if:1) involvement was physically intrusive; 2) thelogistics, such as transportation to or from a loca-tion, were difficult; 3) taking part required a signifi-cant time commitment (30 min to 1 hour was con-sidered acceptable); or 4) participation occurred atan inconvenient time of day, affecting parenting andother responsibilities. Other reasons given by partic-ipants unwilling to take part in research were: 1) fearof the unknown; 2) fear of being infected with dis-ease; and 3) fear of known adverse effects. Specificreasons given by one participant (F 1) for notenrolling, beyond fear of experiments and distrustwere: 1) not directly benefiting from the research(i.e., not personally healed of an ailment); 2) gen-uine disinterest; and 3) failure to see the positive val-ue of past research outcomes.

Across the groups there was agreement that stud-ies of African Americans only were sometimes nec-essary and appropriate (for example, to study sicklecell disease), but the key is to ensure that partici-pants are well informed regarding why the researchis being done on African Americans only, and whythe research does not include people of other racesand ethnic groups.

DISCUSSIONWe observed differences in attitudes toward

schizophrenia and medical research between the twoparticipant age groups. Our study findings concurwith previous investigators who noted that theTuskegee syphilis study has contributed significant-ly to African Americans' distrust of biomedicalresearch4,'15"6 but differ from previous studies in thatthis perceived "Tuskegee effect" applied mainly toolder participants. Younger participants seem tohave little knowledge of the Tuskegee study, whilefor older participants, Tuskegee still seems to influ-ence their doubts about medical researchers' inten-tions. This finding suggests that the perceivedTuskegee effect on medical research participationamong African Americans may be diminishingacross generations. Bates and Harris" noted that theTuskegee study was not likely to be mentioned bynon-African Americans as a factor influencing theirdecision to participate in biomedical research. Itappears this may now also be the case with youngergenerations of African Americans, who have beenraised in an environment where public knowledge ofthat event is fading.

Earlier, we reported a comment by older partici-pants that although young African Americans maynot be directly aware of what happened at TuskegeeInstitute, by overhearing the comments of adultsthey have learned not to entirely trust medicalresearchers. This remark is supported by the obser-vation that young African Americans in this studydid harbor some reservations about participating inmedical research.

Cultural conceptions of mental illness haveimportant effects on when and how an individual ina community seeks clinical care, possible stigmati-zation and the treatment options provided to personswith mental illness.'7 The diverse views expressed byparticipants with regard to the causes of mental ill-ness reflect the broader public's beliefs about mentalillness.'7"8 For instance, a nationwide survey of caus-es of mental illness found that stressful circum-stances were the most commonly endorsed cause ofmental illness, with more than 90% of respondentsbelieving that stress was very or somewhat likely tobe the cause of schizophrenia, major depressive dis-order and alcohol dependence."' A chemical imbal-ance in the brain was the second most commonlyendorsed cause for schizophrenia and major depres-sion in that study, mirroring some of our findings.

In our study, there was confusion about the mean-ing of schizophrenia, with participants defining thedisease in terms of positive symptoms only. Animportant observation was that the majority of par-ticipants believed symptoms associated with the dis-ease can make affected individuals inherently dan-



gerous and prone to violence. This view may beresponsible for the expressed desire by some of ouryounger participants for social distance from thoseafflicted with these disorders. Several investigatorshave identified dangerousness as a central aspect ofthe stereotype of mental illness,'9-2' and earlier stud-ies have shown that blaming the afflicted individualsthemselves increases social distance.22'23 It was there-fore not unexpected that a desire for social distancewas described by the participants who supported theopinion that affected individuals possessed somelevel of control over expressed symptoms.

Previous research on racial attitudes reported thatAmericans who attribute mental health problems tostructural causes (e.g., stress or genetics/biology)are more willing to interact with the mentally ill per-son than those who see individual causes (e.g., "badcharacter" or the "way the person was raised") as theroot of the problem.24 However, we were not able toverify this finding in our study, as this was not partof the themes discussed.

It was not surprising that genetic research contin-ues to raise concerns for many potential research par-ticipants, including African Americans. However, rap-id advances in the field of genetic research make itincreasingly important to explore community mem-bers' knowledge, attitudes and perceptions regardinggenetic research. Although genetic research involvingschizophrenia has yet to have clinical application,genetic studies involving African Americans, such asPAARTNERS, will continue to emerge, with theattendant need for improved minority partnership andrecruitment. We found that the present study's partici-pants expressed little knowledge of genetics andgenetic research. These findings highlight the needfor a concerted effort to educate the African-Ameri-can community about what genetic research is andwhy it is important for the community to participatein order to experience potential benefits that mayarise from such research.

The recommendation that African Americansshould be involved as medical researchers supportspreviously published evidence that such involve-ment is critical to the establishment of trust.2'3 Giland Bob25 noted that the inclusion of minorities asresearchers will decrease the likelihood of a perpet-uation of stereotyped views and distorted perceptionof ethical issues by investigators. Besides, the rela-tive scarcity of minority faculty and staff in universi-ties and research settings can be surmounted byenrolling minority undergraduate and graduate stu-dents as coresearchers and research assistants.26 Thisinvolvement of African Americans as investigatorsand research staff at all levels in genetic and medicalresearch protocols will ensure that the researchagendas correlate with the priorities of the African-

American community, thereby increasing the expec-tations of possible benefits and reduced risk ofharmto this population."I

It is not unexpected that participants includedoversight by a prominent authority as one of theimportant factors influencing participation in med-ical research. The awareness that such an oversightagency exists will help instill trust among partici-pants, seeing that there is an organization that willprotect their interest and ensure that investigatorscomply with ethical rules and regulations guidingthe research process.

Limitations ofthe present study include the smallsample size, a lack of diversity outside of a geo-graphically restricted sampling area and a focus onschizophrenia in the context of mental illness. Addi-tionally, the present preliminary study could notassess the diversity among different African-Ameri-can communities and did not include middle-agedadults. However, many of the expressed attitudesand concerns related to general aspects of medicalresearch. Also, within-group diversity in partici-pants' ages, occupational status and gender assuredthat the results can be generalized to the broaderAfrican-American population.

CONCLUSION & RECOMMENDATIONSBarriers and distrust exist between local African-

American communities and the medical researchcommunity. However, when information is providedabout a clearly established need for study, barriers toresearch participation among African Americans canbe surmounted.

Trust and education were identified as primary toimproving perceptions toward, and participationwith, medical research. These factors can be facili-tated by individuals who are respected and recog-nized within the society. Without the support ofthese individuals, significant inroads into thesecommunities by researchers from outside these com-munities will probably not be as successful. Infor-mation from trusted sources and open dialogue withresearchers tend to dispel myths, correct faultyassumptions and misinformation, and move individ-uals and communities beyond old barriers towardbetter communication and stronger relationships.

Knowledge about the benefits of research studiesamong lay persons can be improved through earlyeducation (e.g., beginning at high school) as well ascommunity education programs targeting African-American communities through the local media. Inaddition, strong community partnerships can beformed by encouraging the participation of lay per-sons in local community advisory boards. Suchinvolvement by members of the community in thedesign of research protocols and recruitment strate-



gies will engender a sense of ownership and partner-ship as well as improve community knowledge ofthe benefits of medical research. Our preliminaryfindings can be used to design specific medicalresearch education and recruitment programs thatwill contribute to narrowing prevailing ethnic dis-parities in medical (and mental health) research par-ticipation among African Americans.

In conclusion, findings from this focus groupstudy suggest that the following measures wouldhelp build trust and foster participation in mental ill-ness research:

* Provide information about the program/study bytrusted and committed sources.

* In research programs directed to AfricanAmericans, include qualified African Americansat all levels of the research team.

* Include information from trusted individualswho share personal positive experiences fromrecent research participation.

* Transfer one-on-one information with membersof the community.

* Establish clear inclusion criteria (i.e.,identifying exactly who is needed).

* Where only an African-American sample isrequired, provide detailed information about theseriousness of the condition and need for the study.

* Do not label a study as "blacks only" withoutadequate education and information beingprovided to potential participants as to why onlyAfrican Americans are being recruited.

* Give information stating specific incentives,including a monetary component.

* Give information about the specific methodsemployed in the study, including detailed timeand travel requirements as well as any requiredprocedures.

* Hand out simplified research brochures thatvisually include African Americans andparticipant "testimonials" from recent studies,and prominently list the oversight (ethicalreview) agency.

Future ResearchMore research is needed to investigate the atti-

tudes and perceptions among African Americansregarding mental illness, biomedical research andgenetics. The focus group format has been demon-strated to be a valuable approach for gathering suchsensitive information.'0 Future research may sur-round the attitudes of individuals in various agegroups, particularly those aged 30-50 as well asmales across all ages and socioeconomic demo-graphics, as these groups were underrepresented inthe current study. An interesting question is the

effect of medical research participation on attitudesand access to healthcare. Would research interven-tions designed to educate participants about diseasemanifestation, inheritance and treatment reduce bar-riers in seeking and complying with clinical treat-ment plans? Future studies can also investigatewhether previous experience with mental health pro-fessionals or knowledge of treatment options by par-ticipants makes a difference in attitudes and percep-tions toward schizophrenia research.

ACKNOWLEDGEMENTWe thank the staff of Birmingham Public Library

for providing a venue for the focus groups. We alsothank Lois Larry and Doris Powell for helping tocoordinate the focus groups.

REFERENCES1. Shavers VL, Lynch CF, Burmeister LF. Factors that influence African Ameri-cans' willingness to participate in medical research studies. Cancer.2001;91 (1 Suppl):233-236.2. Shavers-Hornaday VL, Lynch CF, Burmeister LF, et al. Why are AfricanAmericans under-represented in medical research studies? Impedimentsto participation. Ethn Health. 1997;2:31-45.3. Corbie Smith G, Thomas SB, St George DM. Distrust, race and research.Arch Int Med. 2002;162:2458-2463.4. Shavers VL, Lynch CF, Burmeister LF. Knowledge of the Tuskegee studyand its impact on the willingness to participate in medical research studies.J Natl Med Assoc. 2000;92:563-572.5. Stark N, Paskett E, Bell R, et al. Increasing participation of minorities incancer clinical trials: summary of the "Moving Beyond the Barriers" Confer-ence in North Carolina. J Natl Med Assoc. 2002;94:31-39.6. Thompson EE, Neighbors HW, Munday C, et al. Recruitment and reten-tion of African American patients for clinical research: an exploration ofresponse rates in an urban psychiatric hospital. J Consult Clin Psych. 1996;64:861-867.7. Williams D. The epidemiology of mental illness in Afro-Americans. Hospitaland Community Psychiatry. 1986;37:42-49.8. Seal, DW, Bogart LM, Ehrhardt AA. Small Group Dynamics: the Utility ofFocus Group Discussions as a Research Method. Group Dyn. 1998;2:253-266.9. Jarrett RL. Focus group interviewing with low-income, minority popula-tions: A research experience. In: Morgan DL, ed. Successful focus groups:advancing the state of the art (pp.184-201). 1993. Newbury Park, CA:Sage.10. Lukens EP, Thorning H, Lohrer, S. Sibling Perspectives on Severe Mental Ill-ness: Reflections on Self and Family. Am J Orthopsychiatry. 2004;74:489-501.11. Bates BR, Harris TM. The Tuskegee Study of Untreated Syphilis and publicperceptions of biomedical research: a focus group study. J NatI MedAssoc. 2004;96:1051-1064.12. Agar M, MacDonald J. Focus groups and ethnography. Hum Organ.1 995;54:78-86.13. Krippendorf K. Content analysis: an introduction to its methodology.1980. Beverly Hills, CA: Sage Publications.14. Vanderlehr RA, Clark T, Wegner OC, et al. Untreated syphilis in the malenegro: a comparative study of treated and untreated cases. JAMA. 1936;107:856-860.15. Freimuth VS, Quinn SC, Thomas SB, et al. African-Americans' views onresearch and the Tuskegee syphilis study. Soc Sci Med. 2001;52:797-808.16. Cox D. Paternalism, informed consent, and Tuskegee. Int J Radiat OncBiol Phys. 1998;40:1-2.17. Link BG, Phelan JC, Bresnahan M, et al. Public conceptions of mental ill-ness: labels, causes, dangerousness, and social distance. Am J PublicHealth. 1999;89:1328-1333.



18. Angermeyer MC, Matschinger H. Public beliefs about schizophreniaand depression: similarities and differences. Soc Psychiatry Psychiatr Epi-demiol. 2003;38:526-34.19. Angermeyer M. The effect of violent attacks by schizophrenic personson the attitude of the public toward the mentally ill. Soc Sci Med. 1996;43:1721-1728.20. Penn D, Guynan K, Daily T, et al. Dispelling the stigma of schizophrenia:what sort of information is best? Schizophr Bull. 1994;20:567-578.21. Penn D, Kommana S, Mansfield M, et al. Dispelling the stigma of schizo-phrenia: 11. The impact of information on dangerousness. Schizophr Bull.1999;25:437-446.22. Corrigan PW, River LP, Lundin RK et al. Stigmatizing attributions aboutmental illness. J Community Psychol. 2000;28:91-102.23. Weiner B, Perry RP, Magnusson J. An attributional analysis of reactions tostigmas. J Pers Soc Psychol. 1988;55:738-748.24. Martin JK, Pescosolido BA, Tuch SA. Of fear and loathing: the role of 'dis-turbing behavior,' labels, and causal attributions in shaping public attitudes

toward people with mental illness. J Health Soc Behav. 2000;41:208-223.25. Gil EF, Bob S. Culturally competent research: an ethical perspective.Clin Psychol Rev. 1999;19:45-55.26. Casas JM, Thompson CE. Ethical principles and standards: a racial-eth-nic minority research perspective. Couns Values. 1991;35:186-195. 1

We Welcome Your CommentsThe Journal of the National Medical Association

welcomes your Letters to the Editor aboutarticles that appear in the JNMA or issuesrelevant to minority healthcare. Addresscorrespondence to [email protected].

The National Medical Association's 2006 Annual Convention and Scientific AssemblyAugust 5-10, 2006 * Dallas, TX E http://nmanet.org/Conferences_National.htm

UNiVEsrrYOFjv1U J _ W)~PENNSYLVANIAMEDIEAL UNIVERSITY |CHLOF MEDICINEOFDISALOUTNHVEA RU[IN A The Surgical Pathologist/Academic ClinicianO F S O UTH CAR O L I N A The Department of Pathology and Laboratory Medicine at the University of

Pennsylvania's School of Medicine seeks candidates for several Assistant,Clinical and Research Faculty Positions Available Associate and/or Full Professor positions in the non-tenure academic-clinicianDepartment of Medicine/College of Medicine track. Rank will be commensurate with expenence. Responsibilities include

Medico! University of South Carolina participation in general surgical pathology in a vibrant full service practice atone of the leading clinical care centers in the nation. Applicants must have an

MUSC is an Equal Opportunity Employer and actively M.D or M.D./Ph.D. degree and have demonstrated excellent qualificationsseeks diversity in its faculty, staff and students. in Clinical Care and Education. Board eligibility/certification in Anatomic

Pathology from the American Board of Pathology and an unrestricted PADivision of Cardiology medical license are required.

Division of Emergency Medicine The primary practice location is the Hospital of the University of PennsylvaniaDivision of Endocrinology, Diabetes in the Surgical Pathology section of the Division of Anatomic Pathology.

and Medical Genetics Academic Clinicians are expected to devote their effort primarily to clinicalDivision ofGastroentedicalogyGendHe paticy practice. Excellence in clinical practice and innovation in delivery of care,

Division of Gastroenterology and Hepatology quality improvement initiatives, teaching, including innovative curriculumDivision of General Internal Medicine/Geriatrics development, teaching materials and methods, and mentoring of junior

Division of Hematology/Oncology faculty, is also expected.Hospitalist Program The University of Pennsylvania is an equal opportunity, affirmative action

Division of Infectious Disease employer. Women and minority candidates are strongly encouraged to apply.Division of Nephrology Please submit currculum vitae, a letter of interest, and three reference let-

Division of Pulmonary and Critical Care ters to:Division of Rheumatology and Immunology Emma E. Furth, M.D.

University of Pennsylvania School of MedicineInterested applicants may apply on-line at Hospital of the University of Pennsylvaniawww.musc.edu or may forward a CV to Department of Pathology and Laboratory Medicine

[email protected] or to Frances Glanville, Surgical Pathology Section, Founders Pavilion, Room 6.042Department of Medicine, 96 Jonathan Lucas Street, 3400 Spruce Street, Philadelphia, PA 1910414283

PO Box 250623, Charleston, SC 29425. ____ .


Documents

African-American Community Attitudes and Perceptions toward