Chapter 3

Successful Strategies to Recruit, Retain, and Respect Diverse Populations in Research

By

Roula Ghadban, Brittney Tacy, and Alison Pittman

 Introduction

Effective research leading to progress in science depends mainly on successful recruitment and retention of participants in studies. First contact with potential participants and the impression they get can have a major impact on their decision whether or not to enroll in a study. The most challenging part of research can be the recruitment and retention of study participants, thus effective strategies should be planned and implemented from the beginning. Applying these strategies from the outset can contribute to the success of research studies. Recruitment and retention of participants is even more complicated when the research is socially sensitive and the population under study is considered vulnerable. To have successful research, it is important to have all the strategies for recruitment and retention designed and tailored to be appropriate for the population under study.

Researchers face many challenges when researching vulnerable populations (Corbie-Smith, Thomas, & St. George, 2002). Successful recruitment and retention in research begins with the first contact that a potential participant has with the researcher or the study. The first impression the public has of the study is also important, starting with the brochures, flyers, and posters, to the appointments with the participants, the consents, and the surveys or questionnaires to be used.

Recruitment Strategies

Barriers to the recruitment and retaining of vulnerable participants in research include but are not limited to: the researchers’ perception that this group will be uncooperative for some reasons, ineffective recruitment and retaining strategies, and lack of trust and respect between the researcher and the participants (Williams & Corbie-Smith, 2006).  Some strategies for successful recruitment of vulnerable populations will be discussed in the following section.

Choosing and Training Personnel

Ensuring the research team is sensitive to the lives and needs of the participants from a vulnerable population plays a vital role in the success of research on such groups (Liamputtong, 2007). Research personnel need to be trained to be culturally sensitive to the ethnic background of the participants. They need to be able to establish a relationship of trust and, most importantly, not be judgmental at any time. Literature shows that being culturally sensitive with participants can facilitate recruitment and increase the retention rate of diverse populations in research (Kavanaugh, Moro, Savage, & Mehendale, 2006). It is very important to have research staff with language abilities and cultural knowledge when studying diverse populations.

Recruitment Materials

Recruitment should be personalized (Getrich et al., 2013). In terms of conducting research with participants from a particular group, both cultural adaptations and culturally- tailored material may positively influence study participation and retention (Yancey, Ortega, & Kumanyika, 2006). According to Yancey, et al. (2006), personalized letters sent to potential participants, as part of the recruitment material may be more effective than general-approach letters. Adapting the language of the vulnerable population under study in the research materials has been proven to be an effective, tailored recruitment strategy for such populations (Getrich et al., 2013). Developing tailored and effective recruitment material such as bilingual research materials is essential to successful recruitment of vulnerable populations with a primary language other than English. Even with tailored material, survey response rates may vary across different methods thus it is important to determine which method is best for the population under study (Edelman, Yang, Guyman, & Olson, 2013).

 Respecting Participants

 Respect is a vital element in the research process. It is important for researchers to treat all their participants with respect and dignity, which results in the attraction of more participants, leading to successful research (Liamputtong, 2007).  Respect can be shown using strategies such as: treating all participants with fairness, proper communication between the research team and the participants, thorough explanation of the study, keeping personal information about the participants confidential, frequent contact and a flexible schedule on the side of the researcher when needed, and sharing the research results to engage them in partnership (Liamputtong, 2007; Williams & Corbie-Smith, 2006).

Treating participants with respect will lead to trust between the two parties (researcher and participants). Observations of trust and mistrust of scientific researchers by vulnerable populations, particularly African Americans, were found to be a significant barrier to recruitment (Yancey et al., 2006). Researchers keeping commitments also shows respect toward participants and is essential for maintaining trust and retaining subjects in research.

Informed Consent

Informed consent is a vital part of any research process on any population, whether vulnerable or not. Researchers studying vulnerable populations must pay more attention to informed consent. It should include thorough explanation of the study to ensure that the participants can reach a truly informed decision about whether or not to participate in the research. Being vulnerable, they would want to feel some freedom, thus the informed consent must be free of any coercion.  A clear understanding of what participation involves must be established. This process of educating participants should begin with the initial contact, the informed consent, and should continue for the duration of the study. It should reflect the potential benefits and risks of participation. The way the consent is written needs to be tailored to the life circumstances of the participants that are considered vulnerable. It is best to have the consent available in English and any other language that might be pertinent to the population under study. The researcher should review all the details of the study with the participants using the informed consent document as a guide. The participants should then be given a copy of the informed consent and informed that they can ask questions at any time.

Incentives

Incentives are often provided to research participants by researchers to increase recruitment and participant engagement (Yancey et al., 2006). Retention is strongly influenced by recruitment characteristics, thus using incentives as an effective strategy for successful recruitment may also enhance retention. Participation incentives must be appropriate and equal to all participants and must be approved by the Institutional Review Board (IRB). The use of incentives in research is controversial but it is increasingly pressing especially in research on vulnerable population because of the difficulty to recruit and retain such populations (Grant & Sugarman, 2004).

Retention Strategies

Research with minority and underserved populations can face additional challenges such as with the retention of the participants. Due to elevated health risks, researchers need to push past these challenges and below are some helpful strategies to help retain minority and underserved participants throughout a research study.

Frequent Contact with Subjects

It is important to maintain the right amount contact with the subjects; this will depend on the type of research being conducted and the specific characteristics of the participants involved. One method would be to collect as much personal locating information as possible on the participants; of course this would need to be secured and protected.  For example, Harocopos and Dennis gathered as much contact information as they could when their participants (drug users) were released from treatment centers so they could reach them (Katz et al., 2001) for the follow up interviews (2003). By doing so, the researchers were able to use the contact information to retain their participants. Another method used provided a card with the contact information of the researchers; this allows the participants to report any changes in contact information throughout the course of the study (Harocopos & Dennis, 2003). Having multiple methods of contact will allow researchers to maintain contact with participants and send reminders of upcoming requirements of the study.

Incentives 

Incentives are a common practice for the recruitment of participants and can also be used to retain participants. Whether the study is a short term study or a long term study, using incentives as a method of retaining participants can help improve the attrition rate. Incentives can be given for completing specific tasks of a study until the study is complete (Maxwell, Bastani, Vida, & Warda, 2005). For example, in a study of the retention of low income mothers in a parenting intervention program, the researchers used gifts as a way to compel the participants to complete successive parts of the study (Katz, El-Mohandes, Johnson, Jarrett, Rose, & Cober, 2001). Incentives can also be used in a drawing for all of those participants who complete all aspects of a study. As with any aspect of a study, it is important to be familiar with the target population to provide an incentive that is needed and desired. Incentives can be an effective tool for retention.

Provide Social Support

Another and very important method of retention is providing social support for the participants in the study. Social support can help provide a supportive environment for the participants so they are likely to make a needed change. Researching the target population is key to understanding how social support can influence the participants’ participation and retention in a research study (Keller, Gonzales, & Fleuriet, 2005). Each population is different; conducting focus groups is a great way to identify ways to increase social support to create a supportive environment.

Contract

As with any group of participants, using contracts can be of great use to retain minority and underserved participants. Contracts should be written in appropriate language for the participants involved and clearly outline the purpose of the research study and any commitment/tasks for the participants. Contracts are not meant to trap participants into completing a study, but rather provide them with a resource throughout the study. A clause should be included with the contract to allow participants to leave the study at any time without any consequence. As a method to retain participants, contracts can be helpful when used properly.

Continue to treat subjects with respect

 Treating participants in a study with respect is part of being an ethical researcher. Participants treated with respect are going to be more likely to complete a research study. Strategies for respect are outlined further in the next section.

 An Emphasis on Respect

Researchers working with vulnerable populations must ensure that participants are treated with respect and dignity.  Human researchers make a commitment to treat subjects with respect, and this is just as important as other ethical issues such as nonmaleficence and confidentiality.   In fact, some researchers believe that respect should be recognized as a separate ethical principle in research.  In an article calling for respect as an organizing normative category in research ethics, McGuire and McCullough (2005) argue that respect does not require one to assume needs or desires on behalf of others or to assume decision-making abilities for vulnerable populations who cannot do so for themselves.  Other authors argue that an overly protective attitude toward vulnerable populations is poor policy because they are therefore denied the benefits of evidence-based outcomes, and are therefore slighted (Kahn, Mastroianni, & Sugarman, 1998; Rhodes, 2005).

A History of Disrespect

Historically, many participants have been turned off of research because of a lack of respect on behalf of investigators.     Events such as the Tuskegee Study, the Unfortunate Experiment in New Zealand, and other studies previously mentioned in this book were disrespectful simply through their blatant disregard for human rights and have done nothing for the recruitment efforts for human research.  Examples of unethical research practices that affected vulnerable populations exist in more contemporary research exist even after the 1979 Belmont Report.  In 1994, researchers Victor DeNobel and Paul Mele testified before U.S. Congress about “secret” research they did for Philip Morris on the addictive properties of nicotine.  Many critics argue that if this research had been made public earlier, regulation against tobacco may have been enacted more quickly (Resnik, 1998).   Indigenous groups are frequently cited as being very skeptical of investigators due to previous “helicopter researchers” who touch down, make promises about helping the community, administer surveys, and then leave, never returning to report findings or make good on their commitments (Ferreira & Genron, 2011).  Minorities and homeless persons may also be skeptical of health researchers due to the discrimination and disrespect reported toward these groups in the past (Thomas & Quinn, 2012; Wen, Hudak, & Hwang, 2007).

In his 1987 book The Patient as Partner: A theory of Human-Experimentation Ethics, Georgetown University Professor of Medical Ethics Robert Veatch noted that although exceptionally unethical practices had been virtually eliminated after the Belmont report, a fundamental disrespect of human subjects still persisted.  Veatch noted the problem of treating subjects as “passive ‘material’ suitable for providing additional data points … [which] stems in part from the presumption that clinical research subjects are sick, usually very sick, and thus not capable of autonomous decision-making or full, active participation in research” (p.3).   He insisted that subjects should be thought of as “neither research material nor passive patient, but simply as a person” (p. 4), and he was one of the first leaders in ethical research to note the need to view the subject as a partner in the research process (Veatch, 987).

The Role of Communication

Key to respect of vulnerable research subjects is the process of communication.  Researchers must communicate clearly and openly to subjects at all steps of the research process.  Open dialogue during recruitment and retention as discussed earlier in this chapter is the ideal way to show subjects that they are partners in the research process and that their input is important.  Subjects must be informed that they can stop participation at any time, and that the researchers will remove subjects if the research becomes unsafe.  Periodic checks on the subject’s well-being during the study also demonstrate a mutual respect.  As a study progresses, if any new concerns or risks arise or if any new treatments become available the researcher must commit to communicating these issues to subjects.  When the research is complete, the results of the study should be distributed to subjects in readable language that will make sense to them and help them find help they need.  Participants in qualitative research should be allowed to read their transcript before publication (Reinharz, 1992).

Respectful Language

Respect must also be considered in the language used to communicate with research participants.  Great care must be taken to communicate in the participant’s native language and provide adequate translators trained to deal with research issues.  Yet even when speaking in a subject’s first language, the tone and phrasing of communication can be disrespectful.  Researchers should avoid the use of “why” questions such as “Why did you do that?” as these can be perceived as judgmental and put the participant on the defensive.  Instead, inquiries such as “What motivated you to do it that way?” appear more open and inviting.  Active listening behaviors such as eye contact, repeating back information given by the subject for verification, and refraining from interrupting or finishing participant’s sentences is also important.

Researchers must consider the population in question when communicating with subjects as well.  For example, elderly persons may prefer to be addressed as Mr. or Mrs., Sir, or Ma’am/Madam, and use of slang or swear words is likely to cause offense (Sung, Kim, & Torres-Gil, 2010).  If the researcher is working with individuals from a different ethnic culture, the signs of social respect should be studied in that culture beforehand, such as a slight bend forward of the body in Asian cultures, or respect of personal space in some European cultures (Ludwick & Silva, 2000).  When talking with children, it may be helpful to ensure that the researcher is at the child’s eye level, that the child is given the choice to assent to research practices, and that the language, cognitive level, and attention span of the child is taken into account (Ulvik, 2014).  Incarcerated persons, regardless of the crimes committed, are human beings and therefore have the right to respectful and responsible treatment.  Incarceration itself is viewed by forensic researchers as respectful as it holds offenders responsible for their actions as part of the moral human community (Ward & Syversen, 2009).

Respect through Reciprocity

Arguably the most visible way to show respect to research participants is through reciprocity.  Reciprocity is “the practice of exchanging things with others for mutual benefit” (“Reciprocity,” n.d.).  Giving back to the community ensures that the research impacts the subjects and their community in a positive way.  Researchers can reduce the power imbalance between themselves and the subjects by this very simple concept and “at a very simple level, reciprocity is something we all can do” (Liamputtong, 2007, p. 98).

Summary

Embarking on a research project is daunting for any beginning investigator, but the challenge is greater when working with diverse and vulnerable populations.  Researchers must be sensitive to the unique needs of the participants and develop new ways to recruit and retain subjects.  By underscoring these activities with an attitude of respect and dignity for participants, researchers can ensure that they are conducting ethical and viable research that will benefit the target population for years to come and contribute to the body of evidence in the field of study.

 Discussion Questions

1. Discuss strategies used to recruit within vulnerable populations?
2. Identify methods to retain minority or diverse participants throughout the length of a study.
3. List and describe barriers associated with recruiting and retaining participants in a research study.
4. Consider a vulnerable population you plan on working with. How will you show respect in your communication and language? How will you demonstrate reciprocity?

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