key: cord-0815900-lj3lpb35 authors: Mendelson, Tamar; Sheridan, Steven C.; Clary, Laura K. title: Research with youth of color in low-income communities: Strategies for recruiting and retaining participants date: 2020-08-25 journal: Res Social Adm Pharm DOI: 10.1016/j.sapharm.2020.08.011 sha: 84bc1cfc33e84148c2376280b0a8e477b1ecece8 doc_id: 815900 cord_uid: lj3lpb35 BACKGROUND: Youth of color from low-income urban communities are crucial participants in research, as their involvement can shape effective, culturally responsive interventions and policy to promote youth health and well-being. These young people, however, are an often-neglected research population, due in part to perceived challenges associated with their inclusion as well as marginalized communities’ justifiable mistrust of research. OBJECTIVES: Based on our experience conducting a school-based randomized intervention trial in Baltimore, Maryland, we present strategies for conducting research with low-income, urban youth of color. We discuss strategies in three domains: university-community partnership development, participant recruitment, and participant retention. METHODS: We reviewed partnership building and recruitment strategies employed by our team across four years of trial implementation and evaluated success of participant retention at our final survey timepoint. RESULTS: Partnership building was facilitated by selecting a study design that maximized benefits for all participants, facilitation of capacity building at partner institutions, and attention to research staff hiring and training practices. Effective study recruitment strategies included personal contact with parents and close cooperation between school personnel and study staff. Providing incentives and collecting multiple types of participant contact information contributed to increased retention rates. On average, those who participated in the final survey timepoint were less likely to be male and Latinx and exhibited more favorable baseline mental health than those who did not, suggesting differential attrition based on youth characteristics. CONCLUSIONS: Lessons learned from this school-based trial can be applied more broadly to research with low-income urban youth of color. Researchers should strive to maximize scientific rigor, minimize harm to vulnerable adolescents and their communities, promote positive research experiences for young people, and provide concrete benefits to those who participate. lasting benefits to community members, raising justifiable community concerns regarding 143 exploitation by researchers. This context was the backdrop in which we interacted with schools 144 and families to engage them in the project. University-community partnerships. K-12 co-educational Baltimore City Public 147 Schools were recruited for Project POWER by the research team. Partnerships were initiated if 148 schools did not already administer programs similar to RAP Club or Healthy Topics to 8 th 149 graders and were willing and able to: schedule study programs for 8 th graders during the school 150 day that did not interfere with core academic classes; identify school counselors, social workers, 151 psychologists, or teachers to receive training in RAP Club and teachers to receive training in 152 Healthy Topics; and provide adequate space for study activities. The study team partnered with 153 each participating school for one year, during which time we recruited and randomized 8 th grade 154 students, delivered the intervention and active control programs, and conducted assessments. partnership would be feasible, and assess if the program would meet the needs of the school. 160 We aimed to recruit a volunteer sample of approximately 20-25 8 th graders at each 161 participating school. Eligible students were enrolled in 8 th grade at a participating school, could 162 speak, read, and understand English, and were not members of self-contained special education 163 classrooms. Except in special circumstances, youth under age 18 require parental permission to 164 participate in research; they are considered a vulnerable population as they are not yet fully 165 J o u r n a l P r e -p r o o f mature cognitively, emotionally, or legally, and thus require special protections. In the current 166 study, the school district and university Institutional Review Boards required that each 167 participant provide signed consent from a parent or guardian, as well as their own signed assent. 168 Participant retention and survey participation. The RCT involved three assessment 169 points during participants' 8 th grade year (baseline, post-intervention, spring follow up) and one 170 assessment during 9 th grade approximately one year following program completion to assess 171 program impact on the transition into high school. At each of these points, students completed a 172 self-report survey assessing mental health, coping, and stress, which took approximately 45 173 minutes. These assessments were delivered at each school by research staff, and when possible, 174 were administered to all participants at the school as a group to limit the amount of disruption to 175 classes; snacks were provided. The 9 th grade survey was the most challenging from a retention 176 perspective: participants could not be surveyed as a group at school because they had graduated 177 from the partner K-12 schools and were scattered across different local high schools. Instead, the 178 study team contacted each participant individually to complete the survey virtually or by phone 179 outside of school time, with the option for the research team to do a home visit and bring a tablet 180 or hard copy of the survey if the participant preferred. We provided a $25 gift card to participants 181 who completed the 9 th grade survey. Partnership building, recruitment, and retention strategies employed across four years of 184 trial implementation were identified and explored for the current study through review of study 185 documents (e.g., research protocols; study team meetings, discussions with stakeholders), 186 discussion with staff members regarding their experiences implementing different strategies, and 187 calculation of school and student recruitment and retention numbers by cohort. We also analyzed 9 th grade follow-up survey participation to assess whether participant retention varied as a 189 function of youth baseline demographic and mental health characteristics. (3) attention to hiring and training culturally competent staff. These factors are discussed below. Inclusion of an active control condition. A study design that included an active control 197 condition--the health education program, Healthy Topics--was selected both to enhance study 198 rigor and to ensure that all participants would receive programming designed to provide new 199 knowledge and skills. With respect to rigor, we compared RAP Club with a program matched in 200 duration, frequency, and extent of contact with caring facilitators but designed to provide skills 201 distinct from those offered in the intervention (health education versus emotion regulation and 202 coping), allowing for testing core components in a more targeted fashion. While it is difficult to 203 fully "blind" stakeholders and participants regarding study conditions in a behavioral 204 intervention trial, inclusion of Healthy Topics also enabled us to frame the study to principals, 205 parents, students, and our own study staff as a comparison of two interventions promoting 206 different types of health and wellness without flagging RAP Club as the primary intervention of 207 interest. From a community perspective, we believe that inclusion of two programs, each 208 designed to be fun and educational, helped promote stakeholder buy-in and facilitated participant 209 recruitment and retention. A key component of the Project POWER trial 211 was to equip schools with the training needed to continue offering programming after the 212 research study ended. At the start of the partnership, the principal identified 1-2 school mental 213 health personnel (e.g., psychologists, social workers, or counselors) to be trained in RAP Club 214 and 1-2 teachers (e.g., gym or health teachers) to be trained in Healthy Topics. These school 215 personnel attended 1-2 days of curriculum training over the summer, attended and assisted with 216 program delivery in the fall, and participated in weekly supervision calls. They were paid for 217 their time and received all materials needed for continued program delivery. The study team also 218 offered schools the option for staff to participate for free in program training in subsequent 219 summers and to receive free consultation in continued use of programming if they wished. These 220 steps to build schools' capacity for continued program delivery were intended to avoid the 221 common situation in which, once research studies end, interventions cease to be available, and 222 the community receives no ongoing benefits. Our interactions with principals suggested that this 223 capacity building was positively received and facilitated partnership building. Hiring and training culturally sensitive research staff. When hiring research staff, we 225 gave priority to applicants who had experience and enjoyed working with young people, ideally 226 in Baltimore City or another urban context. When possible, we also hired team members who 227 were culturally similar to participants, which is often beneficial for promoting trust. Research Hopkins with low-income communities of color in Baltimore City to provide context for 230 understanding community perspectives on the university and its research. This also helped 231 prepare staff for common questions and concerns of the community, and phone recruitment 232 scripts were written with these potential concerns in mind. Staff members were also trained in how to interact with school personnel and families respectfully, which in our experience was 234 critically important in establishing and sustaining positive partnerships with schools. School recruitment. School recruitment rates. We identified 92 Baltimore City Public 237 Schools that potentially met study eligibility criteria. We contacted each of these schools via 238 email during our January recruitment periods preceding each new cohort to explore their interest 239 in study participation. Our records indicated that 17 principals declined participation during the 240 initial outreach attempt, and 39 principals did not respond to our communications. Principals 241 declined because of similar partnerships already established at the school, a lack of staffing to 242 assist in carrying out program needs, and a desire for all 8 th graders to participate in the 243 programming. Of those schools who expressed interest and met with the study team, seven 244 school partnerships did not progress due to logistical or resource issues (e.g., too much 8 th grade 245 programming already in place, scheduling barriers). Our team's capacity to partner effectively 246 with schools increased over the course of the trial as indicated by the increasing number of 247 schools we were able to recruit and retain. We partnered with 6 schools in Cohort 1 (after 2 248 schools withdrew from the study), 7 schools in Cohort 2 (1 school withdrew), 7 schools in 249 Cohort 3 (3 schools withdrew), and 9 schools in Cohort 4 (1 school withdrew). including adequate space for programming, feasibility of delivering programming during the 254 school day, identifying school personnel who could be trained in programming, and identifying a 255 school "champion" to liaise across the research team, school personnel, and students. In our experience, principals were often interested in our project because their schools 257 served students with unmet emotional and behavioral needs. However, schools whose capacities 258 or infrastructure were severely limited were less able to effectively support the research. As 259 several partnerships did not progress for this reason, we became more skilled at assessing the 260 school's capacity for partnership during the initial meetings. Over time, we developed a list of 261 screening questions to assess schools' resources and capacities (see Appendix). Although 262 undoubtably schools with fewer resources need interventions as much or more than schools 263 prepared to build research partnerships, we found that attempting project implementation in a 264 school without a basic level of support led to a frustrating experience for all involved. Table 1 , within schools an average of 4 students or parents declined 268 participation (8%) and 22 students or parents did not respond to recruitment outreach (46%). We 269 enrolled slightly more than 30 students at four of the schools as we wanted to accommodate all 270 students who had submitted parent permission and assent forms when possible, and we did not 271 feel that this increase would compromise intervention quality. At other schools, enrollment was 272 lower than anticipated but still adequate for delivery of study programs. In all but one school, we 273 were able to enroll all students who submitted permission forms into the study. At one school, 274 we were unable to enroll 9 students due to program delivery capacity; thus, we selected 275 randomly from among students who had submitted permission forms. Our recruitment rate 276 increased each year (34% of eligible students recruited in Cohort 1; 44% in Cohort 2; 53% in 277 Cohort 3; 56% in Cohort 4), indicating that our team's recruitment strategies improved over inactivated phone numbers. We developed a multi-pronged recruitment strategy to address this 282 challenge: study descriptions and permission forms were mailed to 8 th grade families; study staff 283 visited schools to inform students about the project and send additional forms home with 284 students; and study staff contacted families by phone to follow up. 19 In addition, we periodically 285 re-tried disconnected phone numbers, as it is common for phones to be turned on and off. 286 We worked closely with each school to identify and honor their preferences regarding 287 parent contact. Some schools preferred for their own offices to mail our forms in their back-to-288 school packets; others requested we mail our forms separately. Some schools--particularly those 289 with large proportions of Spanish-speaking parents--preferred to make initial follow-up phone 290 calls themselves so that parents would interact with school staff members they already trusted, 291 whereas others requested that our team follow up with parents by phone after forms were mailed. Contacting households to request parental permission for a child's participation in 293 research is an important interaction between researchers and community members, with potential 294 to produce either positive or negative experiences for families. We took several steps to increase 295 the likelihood of positive contacts. First, we included a brief letter from the school principal on 296 school letterhead with our permission forms to highlight the principal's support for the project, 297 as well as a note from the principal investigator with a simple project summary, as the 298 permission forms are formal legal documents and can be off-putting without additional context. Second, we attempted to reach each family by phone to initiate a personal connection with 300 parents, talk through the consent process, and give them an opportunity to ask questions. This 301 step was crucial not only to allow parents to learn more about the study but also to facilitate likely result in a biased sample (e.g., more involved, less stressed). When phoning parents, study team members first highlighted their partnership with the 306 child's school and principal before stating their Hopkins affiliation. Team members explained 307 that school leadership scheduled intervention sessions so as not to disrupt core academic courses, 308 asked if parents had questions, and gave parents additional time to make the decision if needed. They were trained to listen carefully for signs of discomfort or annoyance and to "back off" as 310 needed. If a parent declined a child's participation or requested not to be contacted again, team 311 members accepted the decision without pressuring the parent. Staff training also provided 312 guidance to address common questions and misconceptions. For example, several parents 313 believed that research conducted by Hopkins would entail the collection of their children's 314 genetic material, a reasonable concern given the history of medical research in the community. 315 We kept detailed logs of each call made, call time of day, messages left, and family 316 members spoken with so as not to burden families with unnecessary repeat calls. In the relatively 317 rare event that we were unsuccessful in reaching a family by phone and were unsure whether 318 they had received the permission form, we attempted a home visit. Relatively early in the study, 319 we received a complaint from a parent who felt threatened when two study team members with 320 whom he was not familiar knocked on his door and did not have identification to prove their 321 affiliation with the study. Following the complaint, we ensured that all study team members 322 carried both Baltimore City Public School and Hopkins ID badges with photo identification 323 when interacting in person with parents or guardians, and we made home visits sparingly. Additional strategies helped incentivize and streamline the process of obtaining signed 325 parent permission forms. For instance, at each school study staff attended back-to-school nights 326 to describe the project to 8 th grade parents. This was a successful strategy for recruitment, 327 although often the number of parents at these events were small. The intervention instructors also 328 visited each 8 th grade classroom to present the program and offer a pizza party to classes in 329 which a majority of the students turned in signed parental permission forms by a given date, 330 regardless of whether the parent permitted or declined the child's study participation. We 331 provided pizza parties for all participating schools, as return rates for parent permission forms 332 were high. Names of students who submitted forms were not made public to the class to avoid 333 shaming students whose caretakers did not return a signed form. Research assistants made daily 334 school visits to answer student questions about the study, remind them to have parents sign the 335 permission form, and collect signed forms. Teachers, office staff, and other school "study 336 champions" played a key role in prompting students to share the forms with their parents and 337 collecting signed forms. We provided small honoraria for school personnel who offered extra 338 assistance in these areas. Parents could return a signed form in several ways: ask their child return the form to their 340 teacher, mail the form to the study team using an enclosed stamped envelope, take a photo of the 341 signed form and text the photo to a secure study team Gmail address, or use an Adobe app to 342 securely sign and email the form (see Figure 1 ). Adding texting and Adobe app options in 343 Cohorts 3-4 not only decreased participant response times but also increased our recruitment rate 344 by almost 25% compared to using only the mailed consent or return to teacher option in previous 345 cohorts. Finally, study staff reviewed the assent forms in person with students at school, gave 346 them an opportunity to ask questions, and collected signed forms from the students. Retention rates. As shown in Table 2 , average survey participation rates by cohort 349 ranged between 87-100% for assessments conducted in school during the 8 th grade (baseline, challenges because funding to conduct that assessment was received after the initial year of the 362 trial, so that activity was not included in the original consent documents. Therefore, the research 363 team re-contacted participant households a year after the original consent to obtain another 364 signed parent permission and youth assent, without updated participant contact information. As displayed in Table 2 , rates of 9 th grade survey completion did not differ by 366 intervention group (RAP Club: 56.4%, Healthy Topics: 54.6%, p = 0.749). However, survey 367 completers versus non-completers did differ on some demographic and mental health 368 characteristics. As shown in Table 3 , 62.7% of students who completed the 9 th grade follow-up 369 survey were female versus 53.0% of those who did not complete the survey (p<0.05). Only 10.0% of survey completers reported being Latinx compared to 17.3% of non-completers 371 (p<0.05). As shown in Table 4 Adolescents frequently have more than one social media account on the same platform (e.g., two 387 or more Instagram accounts); encouraging them to provide all account information was helpful 388 for follow-up in case some accounts were more frequently used than others. Finally, the use of gift card incentives was key to recruiting the students throughout the follow 403 up assessments. Despite our attempts to reach all participants, those who did not complete the 9 th grade 405 survey were more likely to be male and Latinx, more likely to report PTSD avoidance symptoms 406 and functional impairment, and less likely to report positive peer relationships. These data 407 suggest that participants with certain characteristics may be more difficult to engage in survey 408 activities at follow up and may require additional retention and engagement strategies. Table 5 . The approaches outlined in the paper are by no means comprehensive, nor will they 414 address all practical or ethical issues that may arise in this context. Rather, they were presented 415 in the spirit of sharing lessons learned and generating reflection. While our experiences involved school-based intervention research, the principles and strategies presented likely have broader 417 relevance for conducting research with low-income urban youth of color in a variety of settings 418 (e.g., health clinics, recreation centers, community contexts, phone surveys). In our experience, a 419 key theme is balancing rigor with sensitivity in all aspects of design and implementation. RCT designs, often viewed as the "gold standard" for scientifically rigorous tests of an centers, health centers, or other in-person groups, identifying a contact who has daily or frequent interaction with the youth could greatly increase consent returns. We also found that providing 463 parents with the option to sign and return forms using the Adobe app or by photographing and 464 texting the signed forms to a secure study email account significantly improved response times 465 and return rates, suggesting these are successful strategies for future use. 466 Our experience indicates that phone discussions with parents significantly facilitate 467 obtaining parent permission for youth study participation. Study team members reported that the 468 phone conversations were critical because they established trust and rapport with parents, 469 ensured parents understood and approved of the study goals, and addressed parent questions. We 470 found that recruitment staff with the highest recruitment rates were comfortable staying on the 471 phone with parents as long as necessary to mitigate any concerns, guide them through the Adobe 472 sign process, and help them problem-solve how to get the consent form back to us, if needed. For 473 instance, staff were trained to guide parents through the Adobe sign process over the phone in 474 real time, which both provided support to parents and streamlined the consent process. If staff 475 resources are limited, phone calls to parents in the mid to late afternoon on weekdays was the 476 most effective in both finding someone at home and not disturbing them at an inconvenient time 477 (e.g., in the morning or evening when they might be getting ready for work). Weekends and 478 school holidays were also generally a good time to reach both parents and adolescents. At the same time, persistence must be balanced with respect for parents' privacy (e.g., too 480 many contact attempts can be intrusive), and parent refusals must be honored. Provision of an 481 incentive, such as a pizza party, for return of parent permission forms can be an effective way to 482 boost student motivation and speed the process of collecting forms. Incentives, however, must be 483 carefully planned to avoid ethical problems. For instance, incentives cannot be provided only for 484 students whose parents agree to their child's participation, as this would be a coercive approach. Provision of a small incentive to parents is another option (e.g., a $5 gift card for returning the 486 form). In our experience on various studies, student incentives such as pizza parties are more 487 effective than the small parent incentives, but future research should explore this further. Obtaining high rates of participation in follow up surveys is particularly challenging 489 when participants cannot be surveyed in groups in the school setting and when substantial time complete follow up surveys is also helpful, including online platforms that can be accessed via 500 computer or phone, a hard copy that can be mailed or delivered to the home, or a research team 501 member who administers items over the phone. Maintaining a detailed database to track study 502 outreach increases efficiency and facilitates tailoring communications with each participant. While we were able to improve our retention rates over time, there was evidence for 504 differential attrition such that males, Latinx adolescents, and adolescents with PTSD symptoms 505 and peer relationship problems were less likely to be retained at the 9 th grade follow up. Implementation of additional strategies may reduce differential attrition at longer-term follow up. A "check in" contact via email and social media could be added between the 8 th grade and 9 th grade follow-up surveys to remind participants about the study, provide them with a study 509 update, update their contact information, and offer a friendly reminder to keep using program Although initial stages of RAP Club adaptation and testing were conducted in a more 531 community-engaged manner using community-based participatory research, the RCT described 532 in this paper was largely a researcher-driven study, in which the community and its stakeholders 533 (school leadership, parents, students) had relatively little input into project aims, design, or 534 activities. While we advocate the use of greater levels of community engagement even in large 535 trials, we also believe that it is possible to minimize harm associated with researcher-driven 536 study designs. Minimizing harms necessitates transparency with community partners, including 537 the extent to which partners do (or do not) have power to shape study questions and procedures, 538 as well as use of the strategies described above to maximize both rigor and sensitivity. Inclusion of vulnerable youth populations in intervention research poses potential risks to 541 participants and communities, but we believe that not including these populations is even riskier. Young people experiencing chronic stress and trauma deserve societal structural reforms as well 543 as school-, family-, and community-based interventions that can enhance skills for navigating 544 adversity. We hope that researchers will continue to explore ways to more deeply involve and 545 empower stakeholders in research endeavors, including adolescents, parents, and teachers and 546 share effective strategies that can benefit us all. Project POWER survey participation rates Utilizing community-based 602 participatory research to adapt a mental health intervention for African American 603 emerging adults A randomized controlled trial of a trauma-605 informed school prevention program for urban youth: rationale, design, and methods Brief report: moving 608 prevention into schools: the impact of a trauma-informed school-based intervention Partnerships, processes, and outcomes: a health equity-611 focused scoping meta-review of community-engaged scholarship Culturally 614 competent strategies for recruitment and retention of African American populations into 615 clinical trials Addressing the "myth" of racial trauma: 617 developmental and ecological considerations for youth of color Social inequality and 620 racial discrimination: risk factors for health disparities in children of color 6 12 11 22 34 67 15 39 4 10 11 28 24 62 16 69 4 6 43 62 22 32 17 41 12 29 10 24 19 46 18 64 10 16 23 36 31 48 19 23 0 0 0 0 23 100 20 20 5 25 4 20 11 55 Subtotal 307 41 13 102 33 164 53 4 21 22 2 9 4 18 16 73 22 33 1 3 11 33 21 64 23 46 4 9 23 50 19 41 24 25 2 8 12 48 11 44 25 53 4 8 13 25 36 68 26 63 2 3 36 57 25 40 27 28 3 11 4 14 21 75 28 45 1 2 14 31 30 67 29 47 4 9 21 45 22 47 Subtotal 362 23 6 138 Note. Survey participation rates did not significantly differ (p=.05) by intervention group at any timepoint. a Cohorts 1-3 only. b Low response rates resulting from remote survey administration due to COVID-19.