Building Relationships with At-Risk Populations: A Community Engagement Approach for Longitudinal Research



Fig. 2.1
Chronology of the GIRLTALK collaboration



Dr. Wilson left Chicago for fellowships on the east coast, where she completed specialized training in child and adolescent trauma and a research fellowship focused on long-term effects of child abuse and neglect. Through this work, she developed an interest in the links between trauma and risk behavior. When Dr. Wilson returned to the Chicago area for her first faculty position, she reconnected with Dr. Donenberg and the GIRLTALK study, and the two renewed their collaboration. Shortly thereafter, Dr. Wilson received her first NIH-funded grant to re-interview the young women from GIRLTALK and assess lifetime history of trauma and violence exposure, experiences that had not been adequately explored in the original study. Providers at the original recruitment sites had expressed concerns about high rates of trauma, and Dr. Wilson believed early trauma might play an important role in the development of sexual risk behavior, given that these young women were growing up in neighborhoods with high rates of violence. Over the next few years, the research with GIRLTALK shifted to the role of trauma and violence exposure in the development of sexual risk behavior. Dr. Wilson’s collaboration with Dr. Donenberg and a research team at UIC including Ms. Coleman and Dr. Floyd allowed her to take a faculty position at Stanford University School of Medicine, from where she continues to lead the GIRLTALK: We Talk study.

Ms. Coleman joined the team as the recruitment and tracking coordinator for CARES in early 2001, and she brought a wealth of research experience from working with youth and families in the surrounding Chicago areas. She originally came to UIC as a group facilitator and recruiter for a community-based intervention aimed at reducing HIV/AIDS risk in low-income, inner-city African American youth. Shortly after Dr. Donenberg moved to UIC, she met Ms. Coleman and asked her to join our team. She continued to work with us for more than 10 years. Over the course of GIRLTALK, Ms. Coleman became a legend with the families; they frequently asked about her at interview appointments and brought her baked goods for the holidays. Dr. Wilson also worked closely with Ms. Coleman on CARES, learning much about recruiting and tracking community participants and immediately thought of her as the ideal person to locate and engage the young women in her new study. Because the research team had been out of contact with many of the participants for over 3 years, Ms. Coleman’s special touch was crucial for the success of our continued follow-up. Even years after being in contact, she remembered the life stories of many participants and was able to pick up where she left off with them in the new recruitment phase.

After completing her doctoral work at the University of Kentucky, where she was involved with a mass media campaign to encourage adolescents to postpone sexual debut, Dr. Floyd entered a postdoctoral fellowship at UIC with Dr. Donenberg’s research team to continue her training with minority populations. Dr. Donenberg introduced her to Dr. Wilson, given their common interests in reducing sexual health risks among adolescent girls. They first worked together in conducting focus groups and interviews in preparation for submitting the revised GIRLTALK: We Talk grant proposal. Because of their successful collaboration on this project, Dr. Wilson asked Dr. Floyd to take the role of project director when the grant was funded, and Dr. Floyd has continued to lead data collection for this newest wave of the study.



Defining the Issues



Sexual Risk


Our research focuses on understanding and preventing sexual risk behavior in vulnerable populations. In particular, the GIRLTALK study sought to understand the role of mother–daughter relationships and communication in sexual risk taking among African American girls seeking mental health services in low-income Chicago communities. Young African American women are among demographic groups in the United States bearing the highest burden of sexually transmitted infections (STIs), including Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS). According to the Centers for Disease Control and Prevention (CDC), HIV/AIDS is the leading cause of death for Black women ages 25–34 years [1], and risk for young Black women is estimated to be 20 times that for young white women [2]. Furthermore, African American women ages 15–24 are the highest risk demographic group for both chlamydia and gonorrhea, according to United States (US) public health department documentation [3]. A nationally representative study with US high school girls reported that 44 % of African American girls, as compared to 20 % of White and Mexican American girls, were infected with an STI [4]. Like other health disparities that affect minority women, disadvantages associated with living in impoverished, underserved communities likely account for disproportionate rates of STIs among young African American women [5]. Furthermore, African American adolescent girls presenting for mental health services represent a particularly vulnerable subgroup in need of effective intervention to reduce risk for STIs. Indeed, youth in psychiatric treatment tend to engage in higher rates of sexual risk behaviors than their peers [6].


Violence Exposure


Violence exposure represents another major public health problem that disproportionately impacts young women growing up in low-income urban neighborhoods [711]. Violence exposure is also associated with sexual risk (e.g., [7, 1216]) and mental health problems [17]. A nationally representative US study found that 60 % of 0 to 17-year-olds experienced physical, sexual, or witnessed violence in the year preceding the study [18]. In another nationally representative study, 48 % of adolescents reported lifetime exposure to violence [19]. Research with youth in Chicago, from similar communities as the GIRLTALK women, in the 1990s reported that 26 % of youths aged 7–15 years old had witnessed a shooting, 30 % a stabbing, and 78 % a beating. Half of youth ages 10–19 years old reported physical victimization, and three fourths had witnessed a robbery, stabbing, shooting, or murder. Two thirds of high school students reported being witness to a shooting, nearly one half had witnessed a murder, and over one fourth reported being victims of physical or sexual violence [20, 21]. Given these alarming statistics and links between violence exposure and sexual risk, the newest phase of our work has focused on uncovering pathways from violence exposure to sexual risk in the GIRLTALK young women.


Minority Populations: Most Affected, Least Represented


Despite suffering disparate rates of many major health concerns, including violence and sexual risk [5], minority individuals from underserved backgrounds continue to be underrepresented in the published behavioral science literature [22]. In part, this finding relates to the fact that such populations are often hidden, difficult to reach, and distrustful of academic research, making research more costly and challenging to conduct [23]. Yet, research findings with college students or middle-class Caucasians may not generalize to all segments of the population. Moreover, designing effective interventions to reduce health risk requires inclusion of participants from the populations at highest risk. In this narrative, we describe our efforts to maintain a sample of minority women from low-income urban communities.


The Importance and Challenges of Longitudinal Research


Our research uses a longitudinal approach to understand the development of risk behavior and potential risk and protective factors. Most existing research on sexual risk is cross-sectional, correlating reported behavior with reported risk factors, such as early violence exposure. Although cross-sectional studies are cost-effective and play a critical role in the initial stage of establishing a linkage, they represent only a snapshot in development and are unable to capture changes in behavior over time. Examining change over time is particularly important during the dynamic developmental stage of adolescence. Longitudinal data are also critical to understanding phenomena such as sexual behavior, which changes considerably during adolescence and young adulthood. Moreover, longitudinal research allows us to evaluate temporal order of experiences, an essential step in testing causal theories and determining ideal points and targets for intervention.

Despite the benefits of longitudinal research, it comes with a number of challenges [24]. First, this kind of research is undoubtedly an extensive undertaking that requires significant time and resources. Second, individuals who participate in longitudinal research may be unique from their peers, given the commitment required over multiple years and assessments. Third, it is possible that variables most relevant for the individuals in a longitudinal study are no longer the most significant for later generations, making results obscure by the time findings are published. Fourth, the most significant challenge of longitudinal research is perhaps attrition, which is the primary focus of this narrative.

Over the waves of a longitudinal study, participants are inevitably lost, and if attrition is high or selects for important characteristics (e.g., the highest risk or lowest risk individuals drop out at higher rates than others), findings can be biased in important ways. Thus, two of the most challenging and critical aspects of longitudinal research are reducing attrition and, when there is attrition, reducing systematic loss of participants with particular characteristics. In research with low-income, urban minority populations, these issues can be particularly challenging due to high mobility [25, 26]. The hardest-to-reach participants may be those with the most chaotic and difficult life circumstances, such as homelessness, and it is crucial that such individuals continue to be represented. This narrative describes how our relationships with the study participants have played an integral role in maintaining the sample and enhancing the success of the project.


The GIRLTALK Study


GIRLTALK is a longitudinal study that originally focused on mother–daughter relationships, mother–daughter communication, and peer and partner relationships as predictors of HIV-risk behavior among African American girls recruited from mental health agencies serving low-income communities in Chicago. The girls entered the study at ages 12–16 (average age 14). They were followed for 2 years and completed five interviews until they were ages 14–18 (average age 16). Recognizing the high rates of violence in the communities where the girls resided and the potential role of violence in risk behavior, a sixth interview at average age 17 focused on a comprehensive assessment of trauma and violence exposure, including physical, sexual, and witnessed violence. It became clear from the interviews that many girls had experienced violence in their romantic relationships, and violence involving dating partners was strongly associated with sexual risk. These findings led to the current wave of data collection addressing romantic partnerships, including partner violence, as women are entering adulthood (ages 18–25). We call this newest wave GIRLTALK: We Talk to highlight the focus on couples and dyadic relationships. Thus, relationships, first with mothers and now with partners, are central to the design of the study itself.
… relationships, first with mothers and now with partners, are central to the design of the study itself.”

Embarking on this research initially involved forming relationships with community agencies and stakeholders at the mental health agencies where we identified and recruited adolescent girls and their mothers. Early in the process, we elicited input from community members to refine our questions, measures, and procedures, through focus groups, community advisory board meetings, and pilot testing. Our advisory board met annually and was integral to understanding some of the emerging trends and findings. But this story focuses primarily on the relationships we have developed with the participants themselves.

Over the first five waves of the study, we successfully retained 76–81 % of the baseline sample of 266 mother–daughter dyads. At the sixth wave, we only invited girls who participated in at least one of the five follow-up interviews. We enrolled 74 % of those who were eligible (177 out of 239), although more than a year had passed on average since the last contact, and several years had passed for many participants. Of the 177 girls who participated in Wave 6, we have so far interviewed 123 women in GIRLTALK: We Talk, and recruitment efforts are still underway with plans to enroll 130–150. We are also recruiting the young women’s romantic or sexual partners to participate. Although attrition is a risk and limitation of longitudinal research, we see our ability to remain in contact with these women as a success story. Nonetheless, we have lost a proportion of the women at each follow-up and are now facing the challenge of recruiting the most hard-to-reach participants in the sample. Predictably, over the past 10 years, the GIRLTALK women have regularly moved and changed their phone numbers, and we have had to rely on multiple contacts and chains of contact with collateral friends, family members, and community members such as pastors. In many cases, we have reached what may be dead-ends with letters returned and all available phone numbers disconnected. Next steps include going into the field and knocking on doors at the last-known residences and using online people searches. Despite these challenges, we believe our efforts to follow the women from early adolescence to emerging adulthood are worth the ability to capture developmental changes in a way that is lost in studies relying on cross-sectional designs.


The Role of Relationships in Retaining Participants


In preparing for GIRLTALK: We Talk, we mailed letters to all of the young women who participated in the sixth wave of data collection to notify them that a new study would be launching for which they may be eligible. A few months later, we received a message from a staff member in the UIC department where the original waves of the study took place (the project had moved to a new department in a new building). A woman had come to the university looking for the GIRLTALK study. It turned out that she was the mother of a participant who had received our letter, but before she could contact us or pass the information on to her daughter, the letter was lost in a house fire. And yet she recalled the letter and wanted to make sure that her daughter could participate again.

How is it that we have been able to retain this sample, with the dedication of participants exhibited by the story above? In short, trust, genuine concern, and consistent respect for each individual family’s life story. Scientifically, we have employed a number of incentives and tracking procedures found to be successful in longitudinal research [27, 28]. We provide gifts after each interview, such as T-shirts, key chains, and water bottles with the study logo. During the initial five waves, we called families monthly to update their locator information, and we began contacting families several months before the newest wave of funding came through, in anticipation of the project. We sent birthday cards with movie passes, holiday cards, and postcards with return addresses so that families could update us if they moved. We continue to send newsletters summarizing findings from GIRLTALK and related information and resources. Although these strategies undoubtedly help, we believe it is something more, something less tangible that has motivated these women to keep returning.


Relationships in the Context of Recruitment and Tracking



Including Community Members on the Recruitment Team


One critical way that we have maintained relationships with the women is in the context of recruitment and tracking. Our recruitment team includes individuals from the same or similar communities where the young women live. At times, recruiters may even encounter participants in the community. This situation can of course raise challenges. We learned that one of our recruiters, approximately the same age as the women at the current wave, went to the same high school as some of our participants. Although the situation was helpful in the recruiter being able to relate to the participants, we have had to take extra precautions regarding confidentiality. The recruiter was advised to be conscious of the similarities she has with the participants and their curiosity about her position on the research team because participants have sometimes asked her about finding similar work. We asked her to limit conversation around her personal and educational background and to redirect questions about her age, full name, or where she grew up and went to school.

Mindful of issues such as confidentially, coercion, or dual relationships, we have used community connections to build relationships. Once, at a dinner at her church, someone at the table recognized Ms. Coleman’s voice. It turned out she was a participant whom Ms. Coleman had tried to contact several times. The participant had lost our number, and we had not reached her. After this encounter, Ms. Coleman was able to schedule her assessment, and she completed the study. When recruiters go into the field to knock on doors, most people cautiously crack the door, seeming understandably wary at first. But when the recruiters mention GIRLTALK, they are usually greeted warmly invited to come inside.

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Jun 22, 2017 | Posted by in PSYCHIATRY | Comments Off on Building Relationships with At-Risk Populations: A Community Engagement Approach for Longitudinal Research

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