Beliefs About Participating in Research Among a Sample of Minority Persons Living with HIV/AIDS in New York City

Abstract

Despite substantial data documenting the challenges in recruiting racial and ethnic minorities into research studies, relatively little is known about the attitudes and beliefs toward research that are held by racial and ethnic minorities living with HIV/AIDS. The present study assessed the research attitudes and beliefs of a racially and ethnically diverse group of persons living with HIV/AIDS, with research broadly defined as either psychosocial, behavioral, or clinical. Also assessed were factors that would encourage or discourage them from participating in a research study. Six hundred twenty-two participants were recruited from 22 points of service in New York City; data were gathered through a single in-person structured interview conducted in Spanish or English. Findings from a series of quantitative analyses indicated that attitudes about research were primarily neutral or positive, and different attitude and belief patterns were associated with different preferences regarding what would or would not incline one to participate in a research study. Results suggest that minorities with HIV/AIDS are open to the possibility participating in research; however, they also suggest that receptivity to research may not be uniform and indicated a variety of specific research design and implementation options that investigators should consider in order to ensure sufficient access and interest in participation.

Introduction

T here is substantial qualitative and quantitative data documenting the challenges and barriers of recruiting minorities to clinical research studies.^{1

–12} This literature indicates that paramount barriers are mistrust of scientists, government, and research institutions; a belief that their community will not benefit from research results; low levels of health literacy; and inadequate information or lack of awareness about trials for which they may be eligible. However, we know relatively little about how minorities with HIV/AIDS view research, and even less is known about what can be done to foster participation of minority groups in HIV/AIDS research, whether medical or behavioral.^6,8,13

HIV/AIDS continues to be a leading cause of illness and death in the United Sates and has had a notably disproportionate effect on racial and ethnic minority communities.¹⁴ For example, in 2004, estimated HIV/AIDS case rates for blacks and Hispanics were 8.5 and 3.3 times higher, respectively, than rates for whites.¹⁵ Despite these disparities, minorities are less likely to be found among the participants in HIV/AIDS research. Sengupta e al.⁸ found that African Americans accounted for less than a quarter of the population participating in AIDS clinical trials. Similarly, studies have found that non-Hispanic blacks and Hispanics were significantly less likely to be participants in HIV trials compared to non-Hispanic whites.^11,16 Thus, the groups that are disproportionately affected by HIV/AIDS are also the least likely to benefit from participation in clinical research, which provides access to promising new treatments and a level of care and support that might not otherwise be available.¹⁶ Of related and equal concern is the fact that underrepresentation of racial/ethnic minorities in research potentially limits the generalizabilty of findings, so that much of what is learned may not be applicable to those at greatest risk. Such factors underscore the need to increase minority participation in HIV/AIDS research.

Although much of the underrepresentation of minorities in HIV/AIDS research has been attributed to disinterest (e.g., mistrust) among prospective participants, recent research indicates that HIV-infected minorities would in fact be willing to participate in research if asked, particularly if it was recommended by their primary care physician.¹⁷ Such findings are promising and suggest that minority attitudes about research may not be as negative as assumed, or alternatively, that minorities are willing to participate in research despite concurrently holding negative beliefs about research. The latter possibility may be reflected in a recent finding that HIV-infected African Americans held more HIV conspiracy beliefs than their counterparts of other races, but that conspiracy beliefs did not relate to adherence to care, which was universally high.¹⁸

Combined, the extant and emerging literature points to a lack of consensus regarding the research attitudes and beliefs of minority persons living with HIV/AIDS (PLWHA), this despite the importance of such information for addressing the underrepresentation of minorities in HIV/AIDS research. To begin to address this and related issues, five questions were explored within a sample of predominately racial/ethnic minority persons living with HIV/AIDS (PLWHA):

What are beliefs about research held by people living with HIV/AIDS?

Among people living with HIV/AIDS, are there sociodemographic and/or health risk behaviors associated with certain beliefs about research?

Is past participation in research related to current research attitudes and beliefs?

What factors, if any, are likely to either encourage or discourage one to participate in a research study?

How do patterns of family referral differ by attitudes about research? For the purpose of this study, we did not distinguish between behavioral and medical research.

Methods

Data for the present analyses come from the Family Access to Care Study (FACS), a cross-sectional study designed to assess the feasibility of forming partnerships between frontline AIDS service providers and health behavioral researchers for the purpose of disseminating evidence-based interventions for families affected by HIV. As part of this project, data were collected from clients of AIDS service agencies in order to understand their attitudes about participating in intervention research of any potential kind (e.g., clinical, biomedical, psychosocial). The study also gathered substantial data from clients' family members and providers. In this article we focus on data describing clients' beliefs about and experiences with research.

Sample

Participants were recruited from 22 community-based social service agencies, community-based clinics, and hospital-based clinics in New York City where they were receiving HIV/AIDS-related care or services. To be eligible for the study, prospective participants had to be at least 18 years old, speak English or Spanish, and be receiving services for 3 months or longer. Recruitment occurred between spring 2003 and spring 2005 and resulted in a total of 622 participants, approximately 30 from each agency. Participants were 61% male and ranged in age from 18 to 70 (mean = 47.2 years, standard deviation [SD] = 9.0). The sample was 66% African-American, 15% white, 4% American Indian/Native American, 6% multiraciatal/other, and 29% Hispanic. Additional demographic information can be found on Table 1.

Table 1.

Sociodemographic Characteristic by Research Attitudes and Beliefs Cluster Group Membership

	(1) Gov't uses research to monitor people and there is no community benefit (n = 92)	(2) Research is beneficial to participants and is not burdensome (n = 175)	(3) Research can be burdensome, but is also beneficial (n = 82)	(4) Research does not benefit participants but should be a priority (n = 139)	(5) Research funding is not a priority (n = 78)	(6) Research is not beneficial, but also not used against people (n = 56)	Significant post hoc cluster difference (Newman-Keuls) (p ≤ 0.05)
Mean age	46.81	46.97	48.95	46.37	47.19	47.39
% Male	71.74	56.90	62.20	59.71	55.13	67.86
% Hispanic or Latino	18.48	25.14	47.56	22.30	30.77	42.86
							1, 4, 2 < 6; 1, 4, 2, 5 < 3
% White	13.04	10.29	14.63	15.83	23.08	23.21
% African American	72.83	72.00	59.76	64.03	58.97	58.93
% American Indian/Native American	6.52	2.86	2.44	3.60	2.56	5.36
% More than one race	5.43	3.43	2.44	4.32	2.56	3.57
% Speak language other than English at home	6.52	12.57	34.15	5.76	14.10	19.64
							4, 1 < 6; 4, 1, 2, 5, 6 < 3
% Living in own home/apartment	79.35	80.00	76.83	81.29	83.33	89.29
% Married	4.35	5.71	9.76	12.23	14.10	5.36
% Widowed	9.78	9.14	4.88	7.19	5.13	8.93
% Separated or Divorced	16.30	20.57	21.95	22.30	15.38	21.43
% With main partner	55.43	52.57	52.44	58.27	48.72	44.64
% Describes sexual orientation as gay, bisexual or other	30.43	35.43	23.17	34.53	24.36	33.93
% Reporting any full or part-time employment	10.87	6.86	8.54	12.95	8.97	10.71
Mean income security^a	2.15	2.08	2.22	2.29	2.29	2.32
Mean education^b	1.88	1.82	1.49	1.86	1.71	1.56
							3, 6 < 2, 4, 1

For income security, 1 = cannot make ends meet, 2 = have just enough, no more, 3 = have enough, with a little extra sometimes, 4 = always have money left over.

For education, 1 = less than high school, 2 = high school or GED, 3 = Associate's degree or greater.

Procedures

In order to sample agencies, we reviewed HIV/AIDS service directories as well as listing of Ryan White Fund recipients. Eligible agencies included private non-profits and public facilities with a caseload of at least 50 adult HIV/AIDS clients. Agencies had to have been in operation for at least three years and had to offer direct medical, mental health and/or social services to clients. Based on these criteria, we generated a list of 160 community-based agencies serving people living with HIV/AIDS. These agencies were put into random sequence, and stratified according to whether or not they were a clinic or a community based organization (determined by assessing whether or not they offered primary care services). From each category, the first 32 were chosen for study participation (total n = 64). Due to time limitations, only 24 of the original 64 agencies were approached, 22 of which agreed to participate in the study. Each participating agency received $500 as compensation for providers' time. Ethical and practical considerations for establishing formal research relationships with FACS agencies are detailed elsewhere.¹⁹ We used a variety of methods to recruit participants within agencies, including fliers advertising the study and provider referrals; thus, participants were self-selected.

After a client contacted the study office or on-site staff, he or she was screened for eligibility. If eligible, an interview was scheduled. Informed consent took place prior to the interview. Consent procedures assured the confidentiality of individual and family information, although we also explained that summarized results would be shared with agency staff as well as interested clients.

The interview, which lasted 1–1.5 h in English or Spanish, took place at our study offices or at the agency from which the participant was recruited. Participants were paid a $25 incentive and given $4 as travel reimbursement for public transportation. All procedures in this study were approved by the Institutional Review Board of Memorial Sloan-Kettering Cancer Center.

Measures

The interviewer-administered questionnaire assessed needs for services, factors that affect their desire for family-oriented services, and their willingness to take part in research studies. Data used for this paper are a subset of the cross-sectional data collected.

Sociodemographics, health behaviors, and past research participation

For the present research, we utilized each of the sociodemographic factors identified in Table 1. Past research participation was assessed with two items. Respondents were first asked whether or not they were aware of previous research studies in which they could participate. Of those who responded yes, they were then asked if they agreed to participate in any of them. Responses for each question were recorded as either “yes” or “no.”

Attitudes toward medical and psychosocial research

Attitudes and beliefs about research were identified through 18 Likert-type, face valid items (1 = strongly agree to 4 = strongly agree; Table 2). Items were developed for this study based on prior findings about research participation in minority communities, including practical barriers, mistrust, and concerns about revealing personal information. We also included items about potential benefits of research to oneself and one's community.

Table 2.

Factor Loadings from Principal Components Analysis of Attitudes and Beliefs Toward Medical and Psychosocial Research Items

Belief statements	Loading
1. Research is intrusive and burdensome
Being a research participant takes too much time	0.70
Researchers ask people to take too many tests and answer too many questions	0.66
Researchers lie to participants about the risks involved in a study	0.61
Taking part in research makes people worry more about their problems	0.61
Research is an invasion of privacy	0.57
Only the community should decide what research is needed	0.54
Research is a waste of money	0.45
2. Research benefits the community
Research can help improve the care and services people receive	0.82
Research benefits your community	0.66
Research is a waste of money	0.49
3. Government uses research to monitor and use against people
Research is a way for the government to check up on people in some communities	0.78
Information that people give to researchers can be used against them	0.61
Research results are used to promote negative stereotypes and creates discrimination	0.54
4. Research benefits individual participants
Patients who are in research studies receive better care	0.79
Research is a way to get treatment for free	0.62
Taking part in research gives people the chance to talk about their problems	0.56
5. Research on communities and families should be funding priorities
More research should focus on the health of minority communities	0.76
The government should spend more money on research that finds better treatment	0.68
It is important for researchers to study family problems	0.53

Factors that would encourage participation in family oriented programs and research.

We also created a measure to determine factors that would encourage participation in research among people living with HIV/AIDS, particularly programs oriented toward couples and families. For each of 28 study-related factors listed, respondents were asked to indicate if the factor would make them want to participate in research “more,” “less,” or if it “would not matter.” (See Table 3 for the 28 study-related factors).

Table 3.

Research Study-Related Factors Likely to Incline or Disincline One to Participate in a Research Study

1. Someone participating recommended that you join

2. A family member or friend recommended that you join

3. Your own doctor was part of the research team

4. Some of the researchers were members of your ethnic or cultural group

5. Researchers from a major hospital or university were in charge of the study

6. The government paid for all or part of the program

7. Private industry paid for all or part of the program or research

8. You and your family were paid

9. Transportation to activities were paid for

10. Childcare was provided where activities were held

11. Meals were provided during activities

12. Your participation was kept separate from your treatment at the present agency

13. Activities took place in the home of you a family member or a friend

14. Activities took place at an agency known for providing services to people with HIV/AIDS

15. Activities took place at an agency within your community

16. Activities took place at a house of worship

17. Activities took place at this agency

18. Activities took place on weeknights

19. Activities took place on weekends

20. Activities were audiotaped

21. Activities were videotaped

22. You and your family worked with peer advisors, meaning other patients from this agency, or people from the community

23. You and your family worked with volunteers from the community

24. You were able to tell the researcher in person, about your experiences as a participant

25. You and your family used the phone for interviews to speak with counselor or other program staff

26. The internet was used

27. If you attended with other members of your family

28. If you attended in a group

Analyses

Analyses were conducted using SPSS v. 15.0 (SPSS Inc., Chicago, IL). To address our questions, principal components analysis (PCA) was first conducted on the 18-item Attitude measure to identify groupings of attitudes and beliefs about research among participants. Next, each of the components identified via the PCA were used as profile variables in a cluster analysis in order to determine whether there were identifiable subgroups possessing specific patterns of belief about research. Clusters were then characterized by socio-demographics and past research experience using analysis of variance (ANOVA). ANOVA was also used to determine, for each cluster, which of the 28 study-related factors would influence participation in research. For all ANOVAs, statistically significant main effects were followed by Newman-Keuls post hoc analyses (p < 0.05).

Results

Question 1: What are beliefs about research held by people living with HIV/AIDS?

A PCA with varimax rotation was performed on the 18-item Attitudes Toward Medical and Psychosocial Research questionnaire and resulted in a five-component solution (all eigenvalues >1). Items were assigned to a component if they loaded at 0.40 or better on a given component. As outlined in Table 2, components were labeled as follows: (1) research is intrusive and burdensome (7 items); (2) research benefits the community (3 items); (3) government uses research to monitor people and use against them (3 items); (4) research benefits individual participants (3 items); and (5) research on communities and families should be a funding priority (3 items). Two items (“research is a waste of money” and “research results are used to promote negative stereotypes and creates discrimination”) did not load onto any factor and were therefore excluded from further analyses.

Scores from the PCA were then used in a K-means cluster analysis to determine if particular attitudes and beliefs about research were held by discernable subgroups of participants. Dimension reduction through PCA of variables prior to cluster analyses has the desirable effects of reducing the number of variables and assuring that the attributes under consideration are orthogonal.²⁰ Five-, six-, and seven-cluster solutions were attempted, with the best interpretative fit of the data provided by the six-cluster solution. Participants could be classified into one of six groups with respect to their attitudes and beliefs about research: (1) government uses research to monitor people and there is no benefit to the community (n = 92), (2) research is beneficial to participants and is not burdensome (n = 175), (3) research can be burdensome, but can also be beneficial to individuals and communities (n = 82), (4) research does not benefit participants, but should be a priority (n = 139), (5) research funding is not a priority (n = 78), and (6) research is not beneficial, but is also not used against people (n = 56).

Question 2: Among people living with HIV/AIDS, are there specific sociodemographic and/or health risk behaviors associated with specific beliefs about research?

Using cluster membership as the independent variable, one-way ANOVAs were used to identify cluster differences with respect to sociodemographic characteristics. Statistically significant main effects were followed by Newman-Kuels post hoc tests with p set at 0.05 for all between group differences. As Rapkin and Luke²⁰ suggest, such associations with external variables help to validate empirically identified cluster solutions.²⁰

Cluster differences were obtained for educational attainment, being Hispanic/Latino, and whether or not English was spoken in the home (all p < 0.001). Specifically, Hispanics/Latinos, those with lower mean levels of education, and those who spoke a language other than English in the home endorsed what can be described as “neutral” or ambivalent beliefs about research (e.g., research is not beneficial, but also not used against people) in significantly greater numbers than they endorsed either decidedly positive (e.g., research is beneficial to participants and is not burdensome) or decidedly negative (e.g., government uses research to monitor people and there is no community benefit) research beliefs (see Table 1).

Question 3: Is past participation in research related to current research attitudes and beliefs?

Many study participants had research experiences prior to this study. In fact, 58% of the sample said that they were aware of research opportunities before this study and 74% of these individuals (43% of the full sample) had previously agreed to participate in research. There were differences in research participation by attitudinal clusters (overall p < 0.09). Among individuals in cluster 2, who saw research as beneficial and not burdensome, 49% had previously participated in research. Similarly, 50% of cluster 6 members, who saw research as neither beneficial nor burdensome, reported prior participation. In contrast, past participation was lower (30%) among cluster 3 members, who saw research as burdensome, and cluster 4 members (39%), who felt that research does not benefit participants.

Question 4: What factors, if any, are likely to encourage or discourage one to participate in a research study?

Using one-way ANOVA, clusters were found to differ across several of the study-related factors that could influence decisions in participate in research. With respect to encouraging participation in research, four factors were found to differ by belief cluster. Specifically, research being sponsored by government at an academic institution would encourage significantly more members of cluster 3 (35%), who believe that research can be burdensome but also beneficial, to participate in research than it would members of clusters 5 (11%), 6 (16%), 1 (16%), or 4 (16%), who believe either that funding research is not a priority, research is not beneficial but also not used against people, government uses research to monitor people, or that research does not benefit participants but should be a priority. Second, more cluster 2 (20%) and 3 (20%) members, who believe that research is beneficial, would be inclined to participate in research if the research took place during nonwork hours than cluster 5 members (5%), who believe that funding research is not a priority. Third, more cluster 3 members reported that they would be more likely to participate in research if their participation was kept separate from their treatment agency (53%), this compared to members of cluster 6, who believe that research is not beneficial (27%). Finally, having activities audiotaped or videotaped would encourage more cluster 3 members to participate (17%) than cluster 6 members (2%).

Four study-related factors were also found to differ by research belief cluster with respect to what would discourage their participation in research. Forty percent of cluster 5 members, who believe that funding research is not a priority, indicated that a family or group modality would discourage them from participating in research compared to 22% from cluster 1, 20% from cluster 2, and 17% from cluster 3, who believe that government uses research to monitor people, that research is beneficial and not burdensome, and that research is beneficial but also burdensome, respectively. Similarly, more cluster 5 members (36%) than members of clusters 2 (18%) or 3 (17%) indicated that having research sponsored by a government institution would disincline them to participate in a research study. For more than half of the members of clusters 1 (55%) and 6 (57%), who believe that research is not beneficial, having one's participation kept separate from their treatment agency would discourage them to from participating in research, this compared to 34% of cluster 3 members, who believe that research is beneficial. Finally, audiotaping or videotaping of research activities would discourage more members of clusters 2 and 4 from participating in research (43% and 44%, respectively), who believe that research is beneficial or should be a priority, than members of cluster 1 (23%), who believe that government uses research to monitor people.

Question 5: How do patterns of family referral differ by attitudes about research?

Although we did not directly ask participants about their willingness to participate in other/future research studies, we did ask them to refer their family members to take part in this study. Analysis of these referrals shed further light on how patterns of referral relate to attitudes about research. On average, 47% of participants agreed to allow us to contact family members. Willingness to refer did differ among clusters, with the greatest willingness among people in cluster 4 (55%) who viewed research as a priority even though it may not benefit individuals. Conversely, lowest levels of family referral were evident in cluster 1 (39%), who were concerned about monitoring, and cluster 3 (37%) who saw research as burdensome as well as beneficial. In order to further understand these relationships, we took into account another variable that may have influenced participants' willingness to refer their family members: family members' knowledge that the participant was receiving HIV/AIDS-related services at the agency where the participant was recruited to the present study. Among the 12% of participants who said that family members were not in fact aware that they were agency clients, only 25% were willing to refer family members to this research. In contrast, among 70% of participants whose families were aware that the participant was a client of the index agency, 52% were willing to refer their families to research.

Discussion

Participation of diverse patients in research is essential for the development of broadly applicable and effective psychosocial programs and biomedical interventions for persons living with HIV/AIDS (PLWHA). Nonetheless, and despite the fact that funding agencies often mandate that studies recruit demographically representative samples of participants for their research, racial/ethnic minorities continue to be grossly underrepresented in research studies. While several studies have examined attitudes and beliefs about research among racial/ethnic minorities and PLWHA,^8,9,21 relatively few have also examined research attitudes and beliefs among persons who are both a racial/ethnic minority and a PLWHA, and even fewer have also identified mutable factors that would either incline or disincline research participation within this population.

In addressing these gaps in the literature, the present study aimed to identify attitudes and beliefs about research commonly held by PLWHA as well as the sociodemographic and personal history characteristics associated with holding particular attitudes and beliefs. Our findings indicate that the research attitudes of PLWHA in our sample, who are mostly Hispanic and/or African American, are predominately neutral, as reflected in cluster 6 (“research is not beneficial, but is also not used against people”), and in some cases, are clearly positive, as reflected in cluster 2 (“research is beneficial to participants and is not burdensome”). These patterns of belief suggest that investigators seeking to recruit racial/ethnic minority PLWHA into research studies are unlikely to encounter strong opposition to the idea of research in general, and that it is study-specific factors that bear greatest influence on one's likelihood of participating in a research study. The idea that racial/ethnic minorities do not hold predominately negative views about research may, for some, represent a shift in thinking about the nature of, and subsequent strategies for addressing, limited minority representation in research studies. More specifically, rather than focusing on modifying negative beliefs, it challenges investigators to more thoroughly consider how our research studies are designed, implemented, and presented to prospective minority participants.²³

Of the 28 research study-related factors considered in the present study, only five were found to differ by attitudinal subgroup in terms of either encouraging or discouraging one to participate in research. Significantly, three of these factors were associated with both increased and decreased likelihood of research participation, depending upon one's existing research attitudes and beliefs. Research being sponsored by government at an academic institution, having research take place separate from one's treatment agency, and having activities audio or videotaped would tend to encourage participation among PLWHA who view research as beneficial. These same factors, however, would tend to discourage participation among PLWHA who believe that research is either not beneficial or not a funding priority. Different research settings and design strategies may therefore be indicated based on one's prevailing beliefs about the benefits of research endeavors. Although this is difficult to ascertain before one actually enrolls in a research study, giving individuals more options for how, where and when to participate could increase the likelihood of enrolling not only greater numbers of PLWHA, but also individuals possessing a more diverse set of research attitudes and beliefs. These findings also complement those from a recent study of minority drug users with or at risk for HIV, in which a major conclusion was that providing more information throughout the research process would address many of the expressed concerns about research participation.²²

Although negative beliefs about research did not prevail in our sample, those that were endorsed centered on the perception that research does not benefit individual participants and/or communities. Another promising method of increasing research participation may therefore lie in emphasizing the potential benefits of a research project, for the collective good, both during the recruitment and debriefing phases of a research study. For example, in the present study, feedback focus groups were conducted at each of the participating agencies during which agency-specific findings were presented in separate groups held for clients and staff. All clients were invited to attend the groups, regardless of whether they were recruited to the study. Such strategies are often helpful and have become increasingly common in community-based research, but even more robust efforts may be required. For example, investigators might also offer specific details regarding how their research findings can, have or will be used to benefit other, such as through the provision of new or improved services. Similarly, routinely associating the introduction of new services, provisions, or innovations with past research/research participation may also help to underscore the relationship between research and direct benefits to communities and individuals.

In general, sociodemographic factors were unrelated to research attitudes and beliefs. The few exceptions were that Hispanics/Latinos, those with lower mean levels of education, and those who spoke a language other than English in the home endorsed neutral beliefs about research (e.g., “research can be burdensome, but is also beneficial”) in significantly greater numbers than they endorsed decidedly positive or negative beliefs. This finding might relate to linguistic and/or literacy barriers (e.g., through access to information), but it might also more generally relate to one's immigration and socioeconomic status. More recent immigrants to the United States, who are also overrepresented among the poor and underserved, might find their negative views about research tempered by the realization that research is also a way to receive a breadth of services that might otherwise be unavailable to them. To the extent that this is the case, investigators should remain attentive to issues such as participant burden; for example, limiting the likelihood that individuals are subjecting themselves to undue burden for the sake of receiving much-needed or much-desired services.

Not unsurprisingly, past participation in research was also related to participants' current research attitudes and beliefs. Those who had previously participated in research were well-represented within clusters expressing positive or neutral attitudes about research, whereas relatively small percentages of past research participants were found in clusters associated with negative research attitudes and beliefs. This suggests the possibility that firsthand experience with research might foster positive research attitudes; however, our findings may be affected by the possibility that individuals with acutely negative opinions or negative past experiences with research could have declined participation in our study. Thus, those in our sample who had previously participated in research were more likely to be those who had either neutral or positive research experiences, attitudes, and beliefs. This possibility notwithstanding, the fact that past participation in research was associated with more positive research attitudes underscores the importance of first engaging racial/ethnic minority PLWHA in research activities and then allowing them to evaluate the process and outcomes from an informed perspective.

The involvement of family members in research has become increasingly prevalent in research design. Nearly half of the participants in the present study agreed to allow us to contact family members and invite them to also participate in this research; however, this was also found to differ by attitudinal subgroup. PLWHA who viewed research as a priority had the highest rates of referral, whereas those who were concerned about government monitoring and those who saw research as burdensome had the lowest. Perhaps not surprisingly, family awareness that the participant was receiving HIV/AIDS-related services was related to family referral, with lower rates of family referral found among participants who reported that family members were not aware that they received such services. This may suggest that an unmeasured third variable, such as concern for stigma or a desire for privacy is associated with both disclosure to family members and willingness to get involved in research.

Taken together, these results suggest that the potential for engaging minority PLWHA in research may be greater than previously suggested by literature that has highlighted predominantly negative attitudes and beliefs about research as a barrier to participation.^2,8 Given that negative attitudes about research are not as pervasive among racial/ethnic minorities and PLWHA as is often assumed, the present findings suggest that investigators should focus on identifying and, to the extent possible, addressing any study-specific barriers that might either limit or facilitate research participation of racial/ethnic minority PLWHA.

It is important to note that the PLWHA studied in this paper are a convenience sample. By design, they are already connected to at least one setting of care. As such, they may have more positive views about research compared to PLWHA not connected to care. Additionally, the questionnaire used in this study did not differentiate between participation in behavioral research versus participation in medical or clinical research. Thus, it is unclear what type(s) of research participants may have used as their primarily frame of reference when responding to interview questions. Given the paucity of research specifically assessing attitudes and beliefs about behavioral or psychosocial research among minority PLWHA (none could be located in a recent search of the literature), it would be helpful for future studies to explore the extent to which such beliefs would mirror those expressed regarding participation in clinical research studies.

Regarding the present findings, our results are consistent with some recent literature that suggests that minority PLWHA may be inclined to participate in research if provided with sufficient information, including simply being informed of the opportunities.^17,22 This may be the case despite the presence of skepticism or negative views about research or the medical community.¹⁸ This is not to discount the continued influence of mistrust on rates of minority participation in research and utilization of care; indeed, Beer and colleagues²³ recently reported that negative experiences with, and distrust of, health care were among the major themes that emerged in a predominantly African American sample of HIV positive adults who were not receiving HIV care. However, taken together, results presented here and elsewhere indicate that opportunities for engaging minority PLWHA in research may be more substantial than is often appreciated. Thus, for example, investigators should not discount the possibility of successfully recruiting individuals who may possess negative attitudes or beliefs about research.

In order to enhance this possibility, future research should focus on how differing views about research are likely to influence participation and commitment to the research process. Additionally, more research that distinguishes attitudes and beliefs toward psychosocial and medical trials is needed to more accurately assess provisions that would encourage participation in trials. Finally, research that utilizes a population-based sample of PLWHA is needed to ensure generalizability of findings.

Footnotes

Acknowledgments

This research was supported by National Institute of Mental Health grant 1R01MH63045-3 awarded to Bruce Rapkin, Ph.D. (PI)

Author Disclosure Statement

No competing financial interests exist.

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