Insights from African American older adults on brain health research engagement: ‘Need to see the need’

Abstract

African Americans (AA) have an elevated risk of developing dementia, yet are under-represented in clinical research. This project uses a community-engaged photovoice approach to add to existing understanding of barriers and facilitators to AA participation in Alzheimer’s disease research and identify strategies to enhance engagement. Three AA research advocates served as community facilitators to identify and guide groups of AA adults though an 8–9 session photovoice project. Group sessions involved discussions and sharing of images pertaining to various prompts in the area of brain health and research participation. Sessions were audiotaped and transcribed verbatim. Participants identified three categories of barriers to AA research participation: Mistrust, avoidance and fear of acknowledging problems, and seeing the risks of research but not the need. Participants shared suggestions and approaches for ameliorating each of these barriers. This process revealed unique insights into barriers and opportunities for increasing AA engagement in aging and dementia research.

Racial disparities exist in prevalence of Alzheimer’s disease (AD) and participation in AD research for African Americans (AA) in the US. AAs are approximately two times more likely than non-minority Americans to develop AD and other dementias throughout their lifetimes (Alzheimer’s Association, 2018). However, the low numbers of AAs participating in research make accurate incidence estimates challenging. AAs are less likely to enroll in AD clinical trials than non-minority individuals; AAs represent 12% of the U.S. population, yet constitute only 5% of clinical trial participants (Lechleiter, 2014; Zhou et al., 2017).

Previously identified barriers to AAs’ participation in research include mistrust, insufficient information, and fear of the unknown (Ighodaro et al., 2017). Existing research focuses on the lasting legacy of distrust and perceptions from Tuskegee and other historical mistreatments of AA research participants (Hughes, Varma, Pettigrew, & Albert, 2015). Previously identified facilitators of AA research engagement include altruism and perceived relevance of the research to individuals, their families, and the AA community. Recommendations to promote AD research participation include developing consortiums of trial and participant registries, establishing partnerships across organizations, and modifying trial design to accommodate diverse participant needs (Watson, Ryan, Silverberg, Cahan, & Bernard, 2014). However, many of these recommendations remain untested and are not specific to AA recruitment. Despite the acknowledged need for increased AA engagement in AD research, relatively sparse data stemming from scientific investigations in regards to overcoming barriers and engaging AA individuals in research exists.

Photovoice is a community-based, participatory-action research methodology, centered on the premise that sharing perceptions and experiences through photography and discussion leads to an awareness and understanding of relevant issues (Harley, Hunn, Elliott, & Canfield, 2015). Images may help individuals reach a deeper level of reflection and discussion than traditional interviews and focus groups enable (Wang, 1999). Sharing and discussing photos is a critical element of the process as images help individuals reflect and consider their personal, social, and environmental contexts in a way that words alone cannot (Wang, 1999). Additionally, sharing images can enhance dialogue and reflection; images can also help participants remember details they wish to discuss and promote communication on difficult to articulate topics (Bisung, Elliott, Abudho, Karanja, & Schuster-Wallace, 2015). While not previously applied to questions of research engagement, photovoice enables participants to go through the stages of depicting their reality, gaining a deeper and collective understanding, and identifying actions to promote change (Iskander, 2015). Bisung and colleagues (2015) summarize the benefits: photovoice ‘focuses on community led identification of problems, embedded within preexisting social structures, and amplifies the voices of those most affected. These voices—which often remain silent—can catalyze collective action to change behavior and related community practices.’ (p. 7). This study explores the use of photovoice to add to existing understanding of barriers and facilitators to AD research participation among AAs and identify strategies to enhance engagement.

Methods

Facilitators.

Through a research center on aging’s existing AA Dementia Outreach Partnership (AADOP), three AA community advocates were identified to serve as facilitators. Facilitators needed to be AA, willing to complete human subjects protection training, and willing to devote the time and energy necessary for the project. The lead researcher made a brief presentation at an AADOP meeting regarding the project, its goals, and the facilitator role. A follow-up email reiterated this information and asked for volunteer facilitators. Interested individuals met with the lead researcher to discuss the project further and were invited to attend the facilitator training. The facilitator training took place over two 1.5 hour sessions and included a tailored human subjects protection training and overview of the photovoice process. Facilitators were provided with a handbook, developed by one of the investigators, to assist them throughout the project. Facilitators identified AA group participants and led the photovoice group process.

Facilitators took varied approaches to recruiting group participants. The first facilitator drew on personal contacts to form her group. The second facilitator led a chronic pain support group and incorporated the photovoice project into regularly occurring meetings for those who were interested. The third facilitator was an AA staff member involved with AADOP. Her group incorporated AAs who had previously expressed interest or willingness for further engagement. Facilitators had regular check-ins with the lead-researcher that involved sharing impressions on the process and findings, troubleshooting challenges, and reminders and suggestions for upcoming sessions. In-person support - e.g. assistance with camera troubleshooting, helping promote discussion, and general encouragement- was provided as needed.

Photovoice group process.

The group process consisted of 8–9 sessions involving a series of prompts related to brain health and research participation. Participants reflected on the prompts, both during and between sessions, and captured images between sessions that resonated with them. At the initial session, project goals were discussed, informed consent was completed, group members introduced themselves, and participants received a brief overview of camera operation and discussion of confidentiality considerations for taking photos. Participants also completed a brief survey that included basic demographics. Each session ended with a new prompt that built upon the previous one. For instance, at the end of session four participants were provided the prompt, ‘What does brain health research mean to you?’ and at the end of session five participants were provided the prompt, ‘What would influence your decision to participate or not in brain health research?’ Session prompts included elements of the Theory of Planned Behavior which focuses on the role of attitudes, subjective norms, and perceived behavior control on behavioral intentions and behaviors (Ajzen, 1991). Prompts encouraged consideration of these elements in the context of brain health and research participation. Between sessions, participants took pictures that captured their thoughts or related to a memory or story in reference to the prompt provided. Participants brought their images back to the group and shared them to promote discussion. Facilitators were trained to encourage participation and elicit opinions of those who may be more reticent or hold differing opinions.

All sessions were audiotaped and transcribed verbatim and photos were uploaded. Recordings were reviewed after each session to assure fidelity to the session foci. Feedback conversations occurred periodically, typically following each session, with facilitators to troubleshoot. Sessions occurred at the location of the facilitators’ choosing (e.g. their home, the library, a community center, or the research center’s conference room). No incentives were given for participation, but all participants were provided a digital camera to keep and light refreshments were offered during meetings. Eligibility for participation involved being an AA adult who was either older themselves (ages 65+) or who was involved in healthcare discussions for an older adult. We included those involved in healthcare discussions recognizing that research decisions are often made in conjunction with family members or after consultation with friends. Involvement in healthcare discussions was a self-determination made by the participant; no specific criteria were required. Sign-in sheets were used to track attendance. The university’s Institutional Review Board (IRB) approved all procedures.

Data analysis.

Transcripts were coded by the first author using an inductive line-by-line approach; codes were then grouped conceptually to identify re-occurring categories and themes (Creswell, 1998; Streubert-Speziale & Carpenter, 2003). The Theory of Planned Behavior informed the development of question prompts, but pre-conceived themes did not guide coding. A single-coder approach was selected to ensure interpretive coding, with attention to the significance of the data that is possible by intimate familiarity with all of the data, rather than focus on more superficial coding where meaning and context may be overlooked (Morse, 2015). As Morse (2015) indicates, the traditional co-coding approach can ensure reliability “at the expense of interpretive insight” (p. 30) and may keep analysis more superficial. To enhance reliability, the resulting constructs and themes were shared with the photovoice groups during final sessions as a member-checking process to confirm that the identified themes and keys ideas resonated with the participants and that important aspects of discussion were not overlooked (Lincoln & Guba, 1985). Findings were shared with humility by treating participants as the experts and asking what was missed or represented incorrectly, providing a safe space for dissenting opinions; this approach was taken to encourage critical feedback, corrections, clarifications and additions. Consistent with principles of community-based participatory research and to serve as an additional member-check, several photovoice group members who had actively expressed interest in continued involvement were invited at the conclusion of the study to review the manuscript and are included here as co-authors (Wallerstein & Duran, 2006).

Findings

Participants.

Across the three groups, 21 AA community members participated. Participants ranged in age from 35–86 and two were male (See Table 1). Twelve participants were ages 65 or older, five were between the ages of 61–64, and four were under age 60 (ages 35–57). The ages represented in the groups varied: group 1 ages 67–86, group 2 ages 45–70, and group 3 ages 35–71 (See Table 1). The majority had at least some college education. Eighteen participants had personal AD knowledge; nine indicated having a spouse/partner, parent, sibling or adult child with AD and nine indicated knowing someone with AD who was not one of the aforementioned relations. Caregiver roles were not ascertained. Attendance at the photovoice group sessions varied from 2–8 sessions, with a mean of 5.57 sessions attended across groups; attendance averages ranged from 6.4 sessions for group 1, 6 for group 2, and 4.6 for group 3.

Table 1.

Participant Details

	Group 1 (n=5)	Group 2 (n=8)	Group 3 (n=8)
Age
mean (SD), range	76 (8.57), 67–86	61.25 (7.75), 45–70	59.38 (13.34), 35–71
Number of Sessions
mean (SD), range	6.4 (1.82), 4–8	6 (2.07), 2–8	4.63 (1.30), 3–6
Female
n (%)	5 (100%)	7 (87.5)	7 (87.5)
Educational Attainment
High school	1 (20.0)	0	0
Some College	2 (40.0)	3 (37.5)	1 (12.5)
College Graduate	1 (20.0)	4 (50.0)	5 (62.5)
Post-Graduate	1 (20.0)	1 (12.5)	2 (25.0)
Personal Knowledge of AD
No	1 (20.0)	0	2 (25.0)
Yes, spouse/partner, parent, sibling, or adult child	1 (20.0)	5 (62.5)	3 (37.5)
Yes, but not a spouse/partner, parent, sibling, or adult child	3 (60.)	3 (37.5)	3 (37.5)

^*Note, for group 1, two community members observed a single session but chose not to enroll due to competing time demands on their schedules. For group 2, 20 community members observed between 1–6 sessions but did not enroll; this photovoice group was formed from an existing chronic-pain support group and many individuals were present for that meeting and chose to listen in on the photovoice activities.

The photovoice process.

Participants varied in their frequency and extent of capturing photos. The task itself, however, seemed to result in reflection of the prompt in the context of their daily lives, with participants connecting their environment, social experiences, and experiences of both microaggressions and sense of identity and community with attitudes toward research. The presentation of photos in the group session promoted discussion, including questioning the photographer’s connection with the content and others relating the images and concepts presented to their own experiences and beliefs.

Research participation findings.

The discussion of brain health research among AAs highlighted several barriers to participation and corresponding strategies for addressing the identified barriers and encouraging engagement. The barriers and solutions were in the areas of 1) Mistrust, 2) Avoidance and fear of acknowledging problems, and 3) Seeing the risks of research, but not the need.

1. Mistrust.

Participants frequently identified mistrust as a barrier, stemming from historical mistreatment and reinforced by contemporary injustices. Historical mistreatments helped lay the foundation for mistrust, but research mistreatment was not viewed as isolated, distant, instances. Mistrust was a global construct shaped by everyday interactions. Participants discussed instances of oppression and racism in daily life as well as an unwelcoming political climate. Everyday occurrences, such as being followed in stores, and the political reality, shape how they navigate society and the lens they look through when considering research. This context leads to caution and individuals may distance themselves from research. One participant commented on historical sources of mistrust:

One of our [church] members, she said that you can’t get a big turnout of African Americans to do the studies because of things that have happened in the past. A lot of people have been exploited. That kind of prevents them from wanting to do that, it’s a distrust.

Another participant shared, ‘I’ll do anything for studies except vaccines because of Henrietta Lacks.’ Distrust, stemming from a legacy of research mistreatment, with Tuskegee readily coming to mind as a prominent example, extended from the pharmaceutical industry, to the medical field, and to research in general; this leads to an avoidance of both medical intervention and research.

Participant recommendations for addressing mistrust

Participants discussed several strategies for developing trust. Participants suggested gradually building trust prior, ‘If there’s a part that’s strictly conversation and then you get into the medicines, you’re building trust and then maybe you can get into some other stuff.’ Several participants discussed how efforts to promote brain health and research involvement should start small. One participant articulated this, ‘I think that talking about it is the first step…One stone to the next.’ Several participants referenced their own involvement in the photovoice project as their first step, highlighting that education and conversation serve as building blocks for further involvement. While mistrust did not prevent photovoice participation, participants acknowledged needing more information before entertaining more intensive research involvement.

Participants also suggested addressing mistrust by conveying research protections to potential participants. One participant explained, ‘If you know what your rights are- part of the reason we were taken advantage of before is that we didn’t know what our rights were, but we have to teach ourselves and know what those things are.’ Learning about protections can mean conveying to potential participants things to look for in the research process- including informed consent and disclosure of potential risks and benefits-in order to empower individuals to make decisions and increase comfort with the research process.

Participants suggested that helping individuals feel valued could also address mistrust. One participant suggested that being responsive to participant preferences for information might help participants feel valued, increasing the quality of their relationship with the researchers and building trust. Another participant commented:

We have diversity, but we don’t have inclusion. We get the people in here to count but then you don’t include them in the process. Malcolm X again, he says, ‘You can bring them into the diner, but if you don’t give him a plate of food, he’s just sitting there with an empty plate.’ And with African Americans and Alzheimer’s, you give them a plate but they think it’s poison. You have to eat it first.

Her comments highlight the importance of meaningful involvement and helping individuals overcome distrust. One suggested approach was to be transparent and maintain a continued community presence, ‘You can’t stop and start. A lot of times, even if you just get two or three, you have to keep it going…And make sure you follow-up with the results…And decision making too.’ Being involved in the process and valued as an individual who makes his or her decisions and receives results, not just serving as a subject used for the researchers’ needs, all strengthen the researcher-participant relationship and cultivate trust. This relationship and trust are enhanced by developing rapport with the research staff, being treated with warmth and kindness, and feeling like the researchers value and care about them.

Participants also suggested that sharing research opportunities from respected sources, including the church, might help build research trust and comfort: ‘Most of us get info and are motivated to do things from the pulpit.’ Another participant suggested social media could enable individuals to see familiar faces and learn about research opportunities from those they know. Others suggested identifying someone from the community who people respect and are familiar with, such as a school principal or other professional, to join research staff at informational tables during community events. Another participant suggested, ‘That we get more doctors involved, especially African American doctors involved. That may help with the research and build some trust.’

2. Avoidance and Fear of AD

A number of participants recognized an avoidance or fear of AD preventing addressing the topic of brain health, thereby also leading to an avoidance of research participation. Regarding disease avoidance, one participant described dementia as, ‘A horror movie, you don’t want to say it’s happening to you.’ Several participants mentioned being afraid of what they may find out or not wanting to know as barriers to seeking a diagnosis. Others mentioned how negative perceptions of aging, where memory loss is normalized, prevent individuals from address problems and enable doctors to minimize concerns. One participant shared, ‘Years ago they used to say, “so-and-so is getting senile.” But it was just that there was no awareness of dementia.’ Participants expressed that lack of awareness persists today.

Participant recommendations for addressing avoidance and fear of AD

In order to address this normalization of memory problems, where memory problems are viewed as a normal and anticipated aspect of aging, participants indicated the need to advocate for yourself and your loved ones and not dismiss problems due to age. Participants argued for the need to insist when things are not normal and seek a second opinion if concerns seem unheard. One participant advocated for the importance of going to the doctor and not just saying, ‘She’s senile for all this time.’ Many stressed the importance of acknowledging concerns and being your own advocate.

Another approach for counteracting avoidance was normalizing the topic of brain health by developing community partnerships across diverse organizations, interweaving brain health information into daily life. Suggestions included incorporating brain health information into cooking shows and sharing research and brain health information across venues, including senior centers, community centers, churches, extension offices, Medicare and Medicaid, senior and assisted living communities, community events including festivals and art fairs, community baby showers, and health fairs. One participant suggested creating coupon booklets that could then support development of mutually beneficial partnerships with community business, such as car wash facilities, drug stores, farmer’s markets, and gyms. By introducing brain health across settings, the topic should seem less taboo and individuals should overcome hesitancy to address concerns.

3. See the risks, but not the need

Related to the theme of mistrust, participants discussed being aware of research risks and being unclear why their participation is necessary. For many individuals, the potential unpleasant aspects of research participation were more tangible than the benefits. Participants discussed concerns over ‘being guinea pigs’ and general mistreatment, as well as concerns over experimental medications. One participant shared, ‘A lot of times people equate medical research with the practice of medicine…If I’ve had a bad experience with doctors, I might think I might be mistreated by researchers.’ Several participants expressed how beliefs regarding unequal treatment and expectations and experiences of suboptimal medical care exacerbated concerns about research. Many viewed the idea of research as synonymous with medication and were concerned about risks of experimental medications. Participants expressed that if individuals have concerns without seeing the value of research, particularly the need for diverse participants, most will not engage. One participant shared how hesitations and perceptions of risk prevent individuals from seeing potential benefit:

I was hesitant about this, but number one, the issue with most people is you have to get them in the door and they don’t want to come in the door. So if they don’t come in the door they won’t see the benefits.

Participant recommendations for addressing seeing the risks, but not the need

Participants felt that addressing the misperception that all research involves medications and clarifying what research can entail might ameliorate perceptions of risk. One participant shared:

When I’ve told people I’m here, they’re like, ‘Are you taking medicine?’ I said, ‘No it’s photovoice. We’re talking and taking pictures. Not all research involves being tested like a lab rat.’…Everyone thinks you got to take meds, but you don’t.

She went on to discuss that it may help to ‘Show people who are scared of brain research, we’re not hooked up to wires. We’re here of our free will.’

Participants indicated the importance of conveying the necessity of diversity in research. One participant shared a photo of her Easter eggs where each was a different color and shared, ‘They all look like eggs, they’re basically similar on the inside but there are such small differences but how they make such a big impact. Like the different color eggs.’ This recognition of difference is important for understanding the need for diverse research participants. One participant articulated this, ‘There are so many things that are similar about us. But research continues to uncover what is different and how different things are needed for different groups.’ Following the recognition that racial differences may relate to treatment effectiveness one participant acknowledged, ‘If we don’t participate, who’s going to tell us what works for us? Otherwise, we will be left behind again. It’s a vicious cycle.’ Others similarly acknowledged the importance of AA involvement:

Finding the right treatment, what works for African Americans may not work for Whites…Need research groups of all races. [If not] then we would not know what works. So need to be enough of us engaging in research to give researchers a clue what will work for us. If we are not willing, we just have to hope it works for us.

Participants recognized that without AA involvement in research, ‘Whatever they [the researchers] come up with may not work for us.’

Recognizing the importance of diverse participants in research, participants acknowledged the need to contribute, ‘Every one of us has a piece where we can fit in, we just have to be educated on what it is.’ Following a discussion of misdiagnosis in medical care one participant indicated, ‘Medicine didn’t know as much as it did now, but they cannot know as much unless we participate.’ One participant explained how doctors know more today, ‘One of the reasons they know more is groups like this, we come forward and they get a conglomerate of ideas.’ Participants repeatedly shared concerns of being left further behind by not getting involved, ‘We can’t know much unless we do participate and gain the knowledge.’

In order to encourage AAs to participate in AD research participants suggested highlighting the good research can bring, sharing how research can help individuals, their family, and the broader community without negatively affecting well-being. One participant expressed, ‘Research at its core is to figure out what kinds of options there might be.’ Subsequent discussion highlighted that anytime you take medicine, you are benefiting from prior research. Following one participant sharing her positive experience with research, another participant replied, ‘Research makes me leery, but when you are sharing that, that helps. You usually only hear the bad things.’ Another participant shared, you, ‘need to see the need to participate, you need to know it is important and why.’ Several participants suggested that research materials with images of AAs might help the research feel more relevant.

Several participants suggested the idea of building concepts of brain health and research engagement from an early age to help instill the value and need to participate. One participant shared her idea of a course that would cover tips for how to prepare from one stage of life to next, ‘from contraception to cooking to menopause’ incorporating brain health across the lifespan. Several participants discussed how promoting brain health and research engagement involved developing a sense of activism and awareness.

Another participant questioned, ‘How do we as a society and culture, how do we instill this self-help, servant leadership from the beginning?’ She suggested going into elementary schools and talking about the importance of research and brain health. Participants suggested teaching kids how they can positively affect their own existence and their community through small actions, and making helping others and research participation routine from an early age. Participants emphasized the importance of this early start, ‘If we wait until we get old and start looking for the improvements, you’ll lag behind. By not involving young people in the research, I think it is a problem.’

Regardless of age, one idea that emerged from the groups was the idea of viewing research participation as a social responsibility and form of service and servant leadership. One participant articulated this, ‘What is servant leadership? What is my responsibility to my culture, community, society, children, whatever? You have to tell people and educate people on what the choices are.’ This participant shared how traditionally, service is viewed as helping individuals in direct need; research participation also helps those in need -just less immediately. For many, the idea of this service was appealing to help future generations, for, ‘things to be better for my grandchildren when they come along.’

Discussion

Difficulty in participant recruitment is a major barrier to clinical research advances (Fargo, Carrillo, Weiner, Potter, & Khachaturian, 2016). AA participation in AD prevention and treatment research is imperative to ensure that discoveries help address AD within the AA community. Because risk factors for, detection of, and the experience of living with AD may differ among racial and ethnic groups, solutions developed without engaging AA in the research process may not be as effective (Burroughs, Maxey, & Levy, 2002). This study revealed barriers to participation, and corresponding strategies for overcoming the identified barriers and addressing disparities in research involvement, in the areas of 1) Mistrust, 2) Avoidance and fear of acknowledging problems, and 3) Seeing the risks of research, but not the need.

While the themes of mistrust and sustained community engagement and presence are not new, the suggestions for addressing mistrust are novel, nuanced, and actionable (Kennedy, Mathis, & Woods, 2007). These suggestions included building up trust through gradually increasing research involvement, providing education on research protections, and developing meaningful, caring relationships between research staff and participants while being responsive to patient preferences. Mistrust can persist even among those who participate in research; efforts to build trust cannot cease with a signed consent form. In terms of gradual research involvement, sharing non-medication based research opportunities may help AAs recognize not all research involves medication; sharing less invasive opportunities may also help reduce research reluctance (Cain et al., 2016). Several participants viewed their involvement in the photovoice project as this first step, suggesting that expanding opportunities to be involved in psychosocial research and providing structures for organized communication and education may be important avenues to explore further. Consideration of utilizing such approaches as initial entry points for engaging AAs in more traditional and or invasive research protocols would provide a tenable solution to the barrier to such research in the AA community.

While acknowledgement of past research atrocities such as Tuskegee and the case of Henrietta Lacks form a cornerstone in most efforts to engage the AA community today, the present results highlight that focus should be placed on education of the AA community in regards to research protections that exist and are applied today (Shavers, Lynch, & Burmeister, 2000). Such approaches could include concerted efforts to engage AA persons on IRBs and other ethical boards, wider dissemination of knowledge about Federal Drug Administration and IRB oversight of research, and the legal protections inherent in clinical trials. Such strategies may benefit from identification and engagement of AA community leaders and clergy who are trusted figures who could facilitate dissemination and acceptance of the protections conveyed. Awareness of legal protections may not immediately provide reassurance since US laws have previously led to oppression rather than protection. Accordingly, it is important to convey the details of these protections in easy to understand ways and ensure transparent operations of entities such as the IRB (Hagiwara et al., 2014). Once individuals understand details such as how the IRB operates and its composition, hopefully awareness of these structures will become more comforting. One study found that AAs who viewed a pre-consent educational DVD, including information about the research process and protections, were more willing to participate in a hypothetical clinical study than those who did not receive that information and were less likely to report mistrust and privacy concerns as reasons for not participating (Dunlop, Leroy, Logue, Glanz, & Dunlop, 2011).

Developing meaningful, caring relationships between research staff and participants while being responsive to patient preferences requires cultural sensitivity (Barrett, Ingraham, Vann Hawkins, & Moorman, 2017). Asking about preferences for involvement, rather than presenting a single option, and providing feedback and resources may help strengthen these relationships. Similar to the discussion on gradual research involvement above, the development of trust in research staff and care provider relationships requires time and ongoing efforts to build connections. These connections may be enhanced through ongoing efforts to build collaborations between researchers and the AA community.

The concept of avoidance and fear preventing research participation does not have quick solutions. A comprehensive approach, with public and provider education and efforts to normalize the topic of brain health, is likely needed. Suggestions for helping individuals advocate for themselves and their loved ones may be gleaned from patient empowerment work (Whitney et al., 2017). Increasing awareness and comfort discussing brain health, by building partnerships throughout the community and sharing brain health messages from respected and familiar sources of information, should increase comfort discussing memory concerns.

Participants emphasized the need for perceived benefits to outweigh perceived risks. This becomes possible by highlighting the importance of AA involvement in research both at the individual and community level (Herring, Montgomery, Yancey, Williams, & Fraser, 2004). While social inequities and societal injustices add to hesitancy for involvement, participants recognized that remaining uninvolved perpetuates disparities. With this realization, research involvement was viewed as a social responsibility where individuals could contribute to their community’s future wellbeing. Participants felt instilling this sense of responsibility from a young age might help lay the foundations for future research involvement. This has important implications for how to design and target messages in order to enhance future research engagement in the AA community.

Limitations of this study included a small, predominantly female sample in a single geographic area. While results may not generalize to all AAs, this study’s use of a unique participatory, photovoice approach to elicit opinions, perceptions and suggestions offers several valuable suggestions for novel approaches to enhance AA research engagement. Future work should explore whether the barriers and solutions identified resonate with samples that are more diverse. While the wide age range and varied recruitment strategies in this study provided for diverse groups and helped generate novel suggestions to promote research participation, the small sample prevented examination of age or group-based differences. Future work should explore such differences to target outreach approaches. Further, to limit participant burden the surveys in the present study were brief. Future research should explore how ethnicity, caregiving experience, socio-economic status, religiosity, and coping strategies, as well as prior photography and creative experience influence engagement in the photovoice process as well as research beliefs (Epps & Williams, 2018). It will also be important to test whether the approaches suggested in the current project can successfully translate into increased AA research engagement in real-world clinical research recruitment efforts. Ideally, AA community members will be involved in these efforts to share insights into considerations and approach to increase the likelihood of success.