Respondents on the Margins: How To Recruit and Engage Fringe Populations
I recently worked with RRU Research on a qualitative project that studied Hepatitis C patients in New York City. Conducted on behalf of the NYC Department of Health, the project recruited patients who had participated in a Hepatitis C treatment and education program, called Project Inspire. To qualify for the program, patients had to be diagnosed with Hepatitis C and be on Medicaid or Medicare, which essentially meant we were studying some of the poorest and sickest people in New York, many of whom contracted Hepatitis C from intravenous drug use.
This project was not my first experience working with populations of people on the margins of society. A few years ago, when I was a Director at Whitman Insight Strategies, we conducted focus groups with daily heroin users as well as those using opioid replacement therapy (like methadone or buprenorphine). I've also worked on projects involving transgender sex workers, HIV-positive patients, and teens with mental health issues.
Generally speaking, populations of people like the above examples cannot be reached via focus group databases. Essential to successful execution of these projects was using recruitment strategies that effectively reached these populations. With the Hepatitis C patients, the client provided us with a list of former program participants, which is the ideal scenario to start from. However, low-income respondents tend to be more transient (and sometimes homeless), which means their contact information on lists is often outdated. Also, given that many of the patients were former or recovering drug users, getting in touch with them and successfully recruiting them for a focus groups was no small task and involved more follow-up and reminders than usual.
However, in the case of the Hepatitis C patients, we found that many respondents were more willing than we thought to participate in the discussions (the participation rate of this population was higher than usual). While the incentive definitely helps in recruiting respondents on the margin (especially those who are low-income), we believe that something else was happening as well. Part of their greater willingness may have lied in the positive experiences these patients had with the Hepatitis C treatment program. Many respondents who participated in the program got cured (after many years, sometimes decades, of being sick), and some had quit substance use in the process. For these reasons, respondents were grateful for Project Inspire and therefore more willing to “give back” to the program by sharing their opinions and participating in the focus group. The takeaway is to find the emotional lever that can be used to engage respondents—both in the recruiting and in the actual focus group discussions.
With the daily heroin user project, we had no list to recruit from and had to look for creative ways to find this population. One strategy we employed was to partner with community organizations, like safe needle exchanges, who helped us get the word out about the groups and encourage participation. We also relied heavily on referrals to tap into this population.
In addition to recruiting obstacles, holding discussions with respondents on the margins can come with its own set of challenges. Low-income respondents with drug or alcohol dependencies often experience marginalization and even dehumanized treatment from institutions. They’re not accustomed to having their opinion respected or even asked for. In fact, the focus group discussion is often the first time in years that they feel listened to and heard by someone outside of their community. This means that respondents get excited to “tell their stories” and finally have a voice. In one sense, storytelling among marginalized populations can be particularly powerful and generate important insights about the context of their lives. On the other hand, storytelling can lead to discussions that are off-topic or dominated by the stories or story-tellers. But there is an important balance to strike—the moderator has to empower respondents to find their voice and tell their story while also reigning in respondents who go on too long or share too much information that is irrelevant to the research objectives.
Despite the challenges associated with recruiting and conducting focus groups with respondents on the margins, the projects cited above have been among the most rewarding I’ve worked on in my career. Giving respondents who are otherwise voiceless a platform to share their opinion and find their voice is amazing to witness as a focus group moderator. And reporting on these groups to the client is also a gratifying experience, since the research has the potential to positively change the programs and services in ways that better serve these populations. This is research at its best—challenging, rewarding, and leading to outcomes that positively affect the lives of others.
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