An estimated 61 million Americans live with some type of disability in the United States. They tend to experience numerous social disadvantages, including limited access to education, stable employment, and adequate housing. Furthermore, people with disabilities are underrepresented in health and social science research, resulting in limited understanding of this population (Banas et al., 2019; Gonzalez et al., 2021; Shariq et al., 2023). To remediate this issue, effective recruitment and retention strategies are vital.
Recruitment Challenges in Clinical Settings
Small sample sizes and unrepresentative samples are a common limitation in research studies focusing on disabilities, threatening their statistical conclusion validity and external validity (Axén et al., 2021; Shadish et al., 2002). In clinical settings, factors impacting participant recruitment include communication, participant interests and values, participant trust in the research project, and participant availability (Bonisteel et al., 2021). Participants are reluctant to join research studies if they need to deal with the hassle of adjusting their schedule, or if they need to discuss certain topics with researchers (Vogel et al., 2020). Consequently, logistical constraints can lead researchers to oversample easier-to-reach individuals (Banas et al., 2019).
To address the barriers to recruitment in clinical settings, researchers should aim to reduce participant burden and form collaborations with primary care providers to improve the identification of, and access to, potentially eligible participants (Newington & Metcalfe, 2014). When creating a recruitment plan, one should consider the characteristics of potential participants and key influencers in the community, together with barriers to and motivators for participation (Gogtay et al., 2020). Researchers should strive to effectively communicate the information to stakeholders and potential participants, ensuring the research question is relevant to recruiters and subjects (Axén et al., 2021).
Recruitment of People with Disabilities in Social Science Research
People with disabilities have not been a priority in social science research in general. At the outset, research funding and regulatory guidelines can limit recruitment by having overly strict criteria that exclude individuals with more severe or complex disabilities (Banas et al., 2019). Also, since there is a lack of representation by individuals with disabilities in the social science research workforce, it is conceivable that the research team might be paternalistic and ignorant of participants’ experiences, inadvertently excluding individuals with disabilities from research projects (Stone & Priestley, 1996). In a systematic review of the engagement of vulnerable or hard-to-reach populations in health research, only one study of the 116 studies included in the review focused on “persons with disabilities” (Bonevski et al., 2014).
People living with disabilities are commonly considered to be a hard-to-reach population by researchers (Banas et al., 2019). The unwillingness to self-identify as having a disability, as well as the heterogeneous and dispersed nature of the disability community, is a major hinderance. Certain research designs could also be ill-suited for accessibility requirements (Shariq et al., 2023). For example, visits to research centers may be challenging for those with mobility limitations, and virtual sessions may be difficult for those with vision-related issues. Specific disabilities, such as those involving sensory impairments, cognitive impairments, or communication issues, may even limit a person’s ability to fully comprehend the implications of participating in a clinical trial or social science research study and give their informed consent.
There also tends to be skepticism of research among those living with disabilities, due to the legacies of mistrust and power differentials (Banas et al., 2019). Historically, research has not evidently served the disability community, who in turn may view researchers as people who pass judgment and profit off participants’ experiences with disabilities. As such, concerns about possible complications, unfair treatment, and lack of therapeutic benefits deter individuals with disabilities from participating in research studies (Shariq et al., 2023).
Furthermore, youth with disabilities are particularly underrepresented in research (Camden et al., 2015; Carpenter & Towers, 2008). Youth participants are faced with various barriers such as power imbalances, lack of transportation, and scheduling issues (Botchwey et al., 2020). There also tend to be periods of development and flux in many young people’s lives, which make it difficult for them to remain in a longitudinal research project (Bonisteel et al., 2021). Given the challenges with recruitment and retention of youth participants with disabilities, researchers on youth with disabilities typically do not take a developmental approach, with the exception of the few national longitudinal datasets focusing on youth (Livermore et al., 2011), such as the National Longitudinal Survey of Youth (NLSY97) and National Longitudinal Transition Study 2 (NLTS2), through which researchers are able to examine the change and stability of health, education, or employment outcomes. Not surprisingly, most research on youth with disabilities is based on qualitative studies with small samples (e.g., Hall et al., 2020), cross-sectional surveys (e.g., Elraz, 2018), administrative records from the Rehabilitation Service Administration Case Service Report Form 911 (RSA-911) available from the Department of Education (e.g., Dutta et al., 2008), or administrative records from the Social Security Administration (e.g., Manum et al., 2018).
In this paper, we describe the recruitment and retention strategies in the AggiePromise Project, wherein we aim at recruiting 300 youth with disabilities transitioning from high school to the workforce and following them for 18 months. We believe the strategies we have been using and the lessons we have learned will be valuable for both social science and clinical researchers who are interested in studying individuals with disabilities, particularly youth with disabilities.
Recruitment and Retention Strategies in the AggiePromise Project
Overview
Funded by the National Institute on Disability, Independent Living, and Rehabilitation Research, our 4-year research project (October 2022 to September 2026) is designed to examine the employment outcomes of youth with disabilities in the state of North Carolina (NC). A key feature of competitive integrated employment is stability—not necessarily remaining in the same position but remaining in the labor market; an appropriate indicator for optimal employment should be a stable trajectory of being gainfully employed. Therefore, we believe the employment outcomes of transitional youth will be more accurately captured by employment trajectories based on repeated measurement of the same individuals than by a snapshot, binary indicator of employment status (Moore et al., 2011; Shandra & Hogan, 2008). Nonetheless, stable employment tends to be the goal instead of the norm for youth with disabilities. Moreover, the employment data might be distorted or incomplete even if they are collected based on yearly, or even longer-term, recall in longitudinal studies. To remediate the drawbacks in previous studies, we conduct monthly check-ins and quarterly interviews with participants via phone to record their personal, family, and workplace experiences, which enables us to track their employment trajectories and identify factors that explain variability in employment trajectories. The specific aims of the project are:
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Examine an 18-month employment trajectory for transitional youth with disabilities in North Carolina. We intend to recruit a sample of 300 youth with disabilities as they transition from high school to the workforce. We record monthly employment details, including work hours and earnings. In addition, quarterly follow-ups are conducted to examine their health, social-emotional adjustment, personal relationships, and workplace experiences.
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Examine individual experiences with employment and social relations in the family and the workplace 18 months after high school graduation. We intend to recruit a subsample of 10 youth participants from Aim 1 to conduct qualitative interviews with them, their families, and their supervisors, coworkers, or job coach to examine their experiences and reflections towards the end of their 18-month follow-up.
This paper details the participant recruitment and retention strategies that we have been using for Aim 1.
Recruitment of Participants
We strive to recruit a sample of youth participants who vary in gender, race, and disability type. The inclusion criteria are (a) 18 to 22 years old, (b) currently employed or seeking employment, and (c) having received services from state vocational rehabilitation services or community rehabilitation providers. We also require participants to have access to a phone that allows private phone calls. We exclude participants who are unable to participate in phone interviews or provide data due to health reasons (e.g., participants with severe developmental disability). Additionally, youth who have a disability so severe as to make them unable to or not interested in finding employment are disqualified from our project.
Our primary partner in recruitment is the NC Division of Vocational Rehabilitation Services (DVRS) in the North Carolina Department of Health and Human Services. As such, our sampling pool includes a total of approximately 10,000 youth ages 18-22 who have an active or closed VR program case in a given year. The DVRS distributed our invitation letter and flyer on our behalf via periodic mass emails to individuals with disabilities aged between 18 and 22 who have used their pre-employment services. The invitation letter and flyer (see Appendix A & B) provide an overview of the study, incentives, and our contact information. The flyer was developed by one of the research assistants, who is a computer technology major with a disability who also has experience in graphic design. Interested youth or their guardians would then contact us via phone call or email to learn more about the project, confirm their eligibility, and potentially be recruited. We receive inquiries from about 1% (100 out of 10,000) of individuals on the listserv each time a mass email is sent. Most importantly, 95% of the inquiries arrive within one week of the email. Thus, it is crucial to distribute the information on a regular basis. After months of adjustment based on the workload of the DVRS, our project needs, and participant feedback, the DVRS sends out the invitation and flyer every 6 weeks with an updated email list each time.
Occasionally, some youth with disabilities and/or their guardians contact us only to learn they are not eligible to participate. For instance, some are still high school sophomores or juniors. For those students, we keep their contact information and reach out to them again as they approach high school graduation. Nevertheless, the overwhelming majority of those who have shown interest in the study are in fact eligible.
Estimates from the RSA-911 data showed that only 12% of youth with disabilities in North Carolina applied for VR services (Honeycutt et al., 2013). Therefore, to reach out to the large number of youth with disabilities in North Carolina who opt out of VR services, we also directly recruit participants from the school system, community colleges, and community organizations. We have research assistants visit local high schools to speak with staff and share information about our project. Furthermore, we maintain contact with the school staff and revisit them periodically after the initial meeting. We also frequently visit Guilford Technical Community College (GTCC), as well as career centers and community agencies that serve youth with disabilities, including NC Works, Morgan Support Services, and ARC of Greensboro. All those partners have appreciated the outreach by the research team and have agreed to distribute our flyer to potentially eligible participants. Ultimately, these visits allow us to engage with different communities and promote our research study to youth living with disabilities. We started recruitment in March 2023. As of August 2024, we have enrolled a total of 145 participants.
Participant Demographics
The baseline characteristics of participants present a rather diverse sample (Table 1). We have more male participants than female participants (65.8% vs. 28.9%). In terms of gender identity, 3.9% of the participants identify themselves as non-binary and 1.3% select the option of prefer not to disclose. The group comprises predominantly Black (48.7%) and White (43.4%) individuals, with smaller representations of Asians and other races. A notable portion of participants are currently in college or vocational school (36.6%), with a little less than half having undertaken job training during high school (45.5%), having worked for pay during high school (42.1%), and being currently employed (48.3%). Finally, regarding documented disabilities, developmental disabilities (e.g., autism, ADHD) are the most prevalent, followed by mental and physical disabilities. Thirty-six out of the 145 participants reported having more than one type of disabilities.
Retention of Participants
After the youth participants are recruited, data collection consists of a baseline interview, monthly check-ins, and quarterly follow-ups. Personal characteristics collected in baseline include demographic information, clinical diagnoses, health information, relationships with parents (or adults in the parent role), their experiences and satisfaction with the Exceptional Children’s Department at high school and/or VR Youth and Student Services, prior employment history, and their current employment status. Measures for monthly check-ins focus on employment status. Sample questions include “how many hours do you typically work per week” and “what is your hourly pay?” Quarterly follow-ups focus on personal, familial, and workplace experiences. There are scales on job satisfaction (e.g., “I receive recognition for a job well done.”), work accommodation, relationship with family and friends (e.g., “Your family pays attention to you.”), social and leisure time activities, social connectedness, general health, health limitations, and mental health. We have selected measures that adequately capture the conceptual constructs while minimizing the burden of data collection for participants. Most of the measures have been used in national surveys and demonstrated strong reliability and validity. Detailed questionnaires can be provided upon request.
A key feature of the study is to collect monthly employment data from participants. Each participant is tracked for 18 months, and the data are collected by trained research assistants via phone calls. Even though online data collection can be less time-consuming, more convenient, and visually stimulating (Cantrell et al., 2017), we have decided to have research assistants call participants instead of requiring participants to enter data online themselves to reduce the possibility of technical complications, increase compliance with the data collection schedule, and enhance accuracy in data entry. This approach is deemed particularly suitable for the target population of youth with disabilities, ensuring equitable access to participation and accommodating potential challenges they may face with online data entry.
Since our project demands regular check-ins with participants, retention is an important and challenging pursuit. Participants must have the time and willingness to complete the check-ins regularly. At times, a participant would not answer the phone when a check-in is due. Our staff would leave a voicemail reminding the participant that it is time for a check-in and inviting them to call back during office hours. If they still have not called back for some days, we would try calling them again. In some cases, a month or more would pass until we are finally able to reach the participant, and tracking would resume; in these cases, participants are asked to “recall” monthly or quarterly information if it is less than 3 months overdue. If a participant has not answered for several months, we would then send an email asking if they are still interested in participating in the project. We would stop trying to contact them after 2 to 3 emails with no response, since we assume they are no longer interested or able to continue. About 15% of the 145 participants have stopped responding to phone calls after completing one to four quarters of data collection. Consequently, we will model 18-month employment trajectories for participants with complete data, and conduct sensitivity analysis by modeling 15-month, 12-month, 9-month, 6-month, and 3-month trajectories for participants who dropped out at varying points.
The baseline interviews typically take around 20-30 minutes to complete. Participants then receive a $30 gift card for completing the baseline interview. The monthly check-ins usually take 5-10 minutes, and the quarterly interviews take around 20-30 minutes. Each participant is mailed a $50 gift card each quarter after completing at least 2 of the 3 monthly check-ins and the quarterly interview. When appropriate, the participants are reminded they would be able to receive their gift cards for completing each quarterly interview. Occasionally, a participant would claim that they did not receive a physical gift card that had been sent or were unable to activate an electronic gift card, and the research team typically decide to resend a gift card.
We have established a workflow tracking system to make sure the calls are being made to each participant from month to month. The system comprises a daily call log, participant tracker, participant follow-up schedule, and gift card distribution schedule. In addition, at the beginning of each month, the project coordinator will generate a day-by-day schedule listing calls that are due, with which the research team can see which participant needs to be called for which interview (e.g., 2nd monthly check-in, 5th quarterly interview, baseline) on a particular day. All workflow records are regularly checked against the actual data entered. We then discuss and reconcile any discrepancies and correct any errors at weekly staff meetings. It is worth noting that both the daily call log and the participant follow-up schedule were designed by the initial group of research assistants to keep track of one another’s work, organize data collection schedule for each participant, and add a triangulation tool for the participant tracker.
New research assistants start their training with the Social and Behavioral Responsible Conduct of Research Basic Course and the Social and Behavioral Key Personnel Basic Course offered by the Collaborative Institutional Training Initiative (CITI). They are also required to review the project description, background literature, and data collection instruments, as well as the data collection procedures manual. They then spend 10 hours in the office shadowing current research staff, wherein they familiarize themselves with using the workflow tracking tools including the daily call log, participant tracking records, participant follow-up schedule, and gift card distribution schedule. They also participate in at least two weekly research team meetings to learn about the processes for task assignment and data checking. Thus far we have had a stable staff of 4 to 5 research assistants, with one taking on the coordinator role and one being the primary contact for outreach in addition to their data collection responsibility. Typically, new research assistants are recommended by current staff members and complete training before current staff members graduate and leave the project.
Ethical Considerations
Given our focus on the employment of youth with disabilities, we have prepared resource packets for participants who express need for any immediate assistance with health or vocational rehabilitation referral. We have also connected our participants to a resource hub developed by Work Together NC.
Enrollment (obtaining informed consent), scheduling, data collection, and gift card distribution are all conducted by project staff via phone calls or emails. The researchers do not have direct interaction with the participants or their families. This is intended to mitigate power imbalances between researchers and participants.
All project staff have completed the relevant trainings for conducting research with human subjects. Moreover, the initial group of research assistants were recruited among students registered with the Office of Accessibility Resources. Upon joining the project, all project staff receive training on disability awareness and rehabilitation counseling.
To avoid any unintended consequences on participants’ employment, we ensure participant’s answers are not known to their employers (which might impact their employment prospect). As stipulated in our Institutional Review Board protocol, we will not share the participants’ responses with anyone unless required by law.
All survey data are collected electronically (directly entered by project staff during the telephone interviews) in Qualtrics on project computers only. Qualtrics is a secure data collection system vetted by the university. Data are be stored and analyzed in password-protected project computers. Findings will only be reported in aggregate forms without revealing individuals’ physical location, health status, or other identity information. Only de-identified data will be shared with the research community.
Project Evaluation: Participant Feedback
In November 2023, the project evaluator administered a survey to the youth participants which sought to understand their perceptions of the project and their experiences with the interview process. The survey included a mix of multiple choice questions and open-ended questions. The survey was optional, without additional incentives, and administered entirely anonymously by the project evaluator, who then shared the findings with the researchers.
A total of 27 participants completed the survey, representing about 30% of all enrolled participants at that time. All 27 participants had been completing the phone interviews for months. As shown in Table 2, over half of the participants completed the interviews by themselves, while the rest reported they needed assistance from a family member to complete the interviews.
Experiences with Research Assistants
Overall, the participants described their experiences as positive, mentioning the opportunity to speak about their work and social lives to courteous interviewers as a highlight. One participant explicitly said the “interviewers have been very polite and are good listeners.” Most participants believed the phone calls were quite easy, and that meeting “once per month is just right,” suggesting their satisfaction with the research design. There were times when participants thought the check-ins were rather tedious, as many of the same questions were asked month to month. Participants would sometimes say, “Didn’t you already ask me this last month?”
Satisfaction with the scheduling processes was more varied (see Table 3). While more than half of the respondents did not complain that the scheduling process was complicated, a few participants expressed that they wished the calls were better organized, as sometimes no follow-up calls were made by project staff or both parties would “play phone tag.”
Perceived Benefits
Participants perceived some benefits associated with the project, apart from the gift cards. They indicated that the questions asked throughout the interviews were a good use of time as they captured necessary information while allowing participants to reflect on their thoughts and experiences. One participant stated, “The questions that are chosen [are] good to get an idea on things with not much pressure but gives people time to think a little.” Participants also reported a greater understanding of the job searching process and noted the importance of particular skills and behaviors, such as learning how to request additional hours and track their work progress, through the process of answering questions on the monthly check-ins and quarterly interviews. They also shared that the interviews have helped them become more aware of the problems and personal challenges that impede their success. One participant noted, “I have benefited by becoming more aware of my struggles and being more open to change certain behaviors or seek help.”
In the end, the participants reported positive experiences, taking advantage of the opportunity to discuss their current and potential job prospects with supportive individuals. They expressed appreciation for the project, indicated intent to stay on the project, and hoped their participation will ultimately help those with disabilities in the future. The gift cards provided by the researchers were also seen as a great benefit, with one participant claiming that it helps them buy home essentials.
Project Evaluation: Research Assistant Feedback
Another part of the project evaluation involved a survey of research assistants in November 2023 to learn of their experiences as project staff. The research assistants are the ones who directly interact with participants to collect data. Thus, the quality of their work determines the quality and integrity of the data. As such, it is crucial to understand their experiences, maintain high morale, and provide timely support.
The Data Collectors’ Work
The research assistants understand the importance of reaching participants according to the pre-determined timeline. It is imperative to have all monthly calls precisely 30 days apart as much as possible, and all quarterly calls as close to three months apart as possible, as the goal of the project is to examine the employment trajectories of participants. Nonetheless, oftentimes multiple attempts of calls and emails need to be made before a participant answers the phone. There are over 150 participants in our project currently and the research assistants have to conduct the same surveys repeatedly over many months. Not surprisingly, they indicated in their responses that they did sometimes find their work to be a little monotonous.
We have the advantage of having multiple research assistants and work shifts ranging from 2 to 4 hours, so sitting in the office is not too draining or tiresome. Weekly meetings are held to ensure they feel guided and supported. They also are constantly reminded of the importance of accurate data collection and the overall value of our project.
Interactions with Participants
The research assistants reported participants were mostly pleasant to work with and interactions over the phone interviews were generally positive. People with physical disabilities typically answered the questions on their own and did not have a parent/guardian help them, while those with mental or sensory/communicative disabilities were more likely to have their parents or guardians sit in on the calls and answer questions for them.
The research assistants suggested that some participants viewed the calls as a chance to air their grievances, or share their personal stories, emotional states, and life updates without being prompted. This would make some of the quarterly interviews go on longer than the projected 20-30 minutes. All research assistants were able to build rapport with participants, even though a few participants indicated their preference for the same research assistant to be contacting them on a regular basis.
All research assistants agreed that the gift cards served as a good incentive for the study participants. Some participants would ask about the gift cards during the calls, and were quite happy to receive them. One person said that the “tangible joy in their voices added a personal touch to the often-routine nature of data collection.” At certain times, participants would get so excited as they thought they would receive a gift card after a simple monthly check-in, only to be told they would receive it after completing a quarterly interview.
Feelings Towards the Project
Overall, the research assistants reported a highly positive experience and enjoyed being a part of the project. They emphasized the importance of timely communication and attentive listening during data collection. They also highlighted their meaningful interactions with participants and the gratitude expressed by participants. They acknowledged personal growth through their work on the project, citing the development of interpersonal skills as valuable takeaways. One person stated they acquired “adaptive techniques and strategies” necessary when “quick thinking is involved.” Overall, they found the opportunity to engage with diverse participants to be incredibly rewarding and appreciated the possibility that their work could ultimately help youth living with disabilities.
Discussion
It is important to examine the functioning and well-being of youth with disabilities while considering the fluid nature of employment and the interconnectedness of social contexts. Therefore, we follow the same individuals with disabilities over an extended period, assess their employment status frequently, and collect longitudinal data on their personal, family, and work experiences. Our research project represents a concerted effort to illuminate the employment experiences of emerging adults with disabilities and to identify factors that promote long-term resilience and success. This paper is intended to fill a gap in the literature about recruiting and retaining this population in the social and behavioral science research.
Lessons Learned About Recruitment
A common challenge in recruitment for research projects is having a limited participant pool, and this can particularly be a challenge since youth with disabilities are a minority group. We are fortunately able to use a multi-prong recruitment strategy to address this, relying on collaborating partners and community groups to share information about our project and reach participants. We also make sure the promotion materials of our study are concise, accessible, and easy to understand.
To address the fear of exploitation and skepticism about research that may deter those living with disabilities from participating in research projects where they are seen as the population of interest, we strive to build strong partnerships with agencies and organizations that serve youth with disabilities, who both facilitate outreach and promote trust within the disability community. To streamline our recruitment processes, we conduct screening over the phone or via email, and consent forms are signed electronically. Efforts like this reduce participant burden and make the recruitment of young people with disabilities more efficient.
The evolving communications landscape has engendered different ways of reaching participants. While landline coverage has decreased, we have witnessed the advent of mobile phones and digital communications which are being increasingly used by younger populations. It is worth noting, however, that neither participants nor research assistants mentioned social media or texting as important mechanisms for recruitment and data collection. Our stakeholders, including members of the advisory committee, have emphasized the importance of personalized, persistent, and targeted engagement. We are not aware of evidence of the effectiveness of recruitment and retention of participants with disabilities via social media.
The most important lesson we have learned in this process is that frequent contact (Cruz-Eusebio, 2022) with consistent messaging (Roach, 2021) is critical to have participants actually take action (i.e., make inquiry about participating in the project). In our recruitment campaigns, we received most inquiries within the first day or two after a mass email is sent, and inquiries completely dissipated in less than a week. This finding aligns with marketing principles about the importance of repetition. We decided on sending out the mass email every six weeks or so to ensure reengagement of the target population, avoid fatigue with the messaging and to respect the workload of our primary recruitment partner, NC DVRS.
Addressing Recruitment and Retention Challenges
The validity of a study starts with recruiting a representative sample with a sufficient sample size; if the study is longitudinal, validity also relies on minimizing attrition, and hence minimizing selection bias (Shadish et al., 2002). While most social-behavioral studies rely on convenience sampling, and thus representativeness can only be gauged post hoc, researchers have more control on sample size. After detailing common challenges in recruitment of research participants in clinical studies that resulted in low response rate, inadequate sample size, and lack of representativeness, Patel et al. (2003) identified a number of areas to strengthen recruitment efforts, including paying special attention to initial contacts made with community partners, promoting the research project in a variety of venues, stressing relevance of research in messaging, providing accommodation and flexibility, and building research partnerships. These are consistent with the themes identified in a more recent study on recruitment strategies for prevention programs for children of parental mental illness (van Doesum et al., 2016), especially regarding building relationships with participants and managing logistics. Research teams, especially the interviewers, should be committed, culturally sensitive, and non-judgmental, while the recruitment strategies should comprise culturally responsive outreach and strong community engagement (Botchwey et al., 2020). Researchers should diversify the potential participant pool and make recruitment more accessible, while also building accommodations into the data collection process itself (Banas et al., 2019).
It has also been emphasized that person-centered approaches to consent should be adopted, ones that empower people with disabilities to exercise their right to choose (Shariq et al., 2023). There should be a proper communication strategy that not only informs potential participants of the existence of the study but also the associated risks and benefits for a person with a disability (Bonisteel et al., 2021). For youth participants in particular, researchers should aim to effectively engage them via suitable channels, allowing them to provide feedback, build rapport, and have consultations with parents (Gonzalez et al., 2021). All in all, there must be support for collaborative, participatory, and emancipatory research designs that seek to mitigate power differentials between researchers and participants and support researchers who do research with people with disabilities rather than about people with disabilities (Banas et al., 2019). In the AggiePromise Project, we adopt a flexible consenting process. The screen call, consent, and baseline interview are separate steps. Participants can take their time to review and sign the consent form online after the initial screen call, which reduces the potential for coercion. We also allow parents or guardians to assist with the consenting process and subsequent data collection, to accommodate the needs of youth participants with disabilities.
Limitations in the Design and Implementation of the AggiePromise Project
Several limitations in the design and implementation of the AggiePromise Project, all of which are relevant to recruitment and retention of participants, must be noted. First, we exclude participants who cannot participate in interviews or provide data due to health reasons and youth who have a disability so severe as to make them unable to or uninterested in finding employment. These exclusion criteria are adopted based on consideration of the project aims, which is to understand what drives the variability in employment outcomes among youth with disabilities who have the potential to be employed. Nonetheless, findings of this study will not be generalizable to those with severe health issues, severe disability, or no intention to seek employment. Also, while we have budgeted for interpreter support, we have not had participants who are hard-of-hearing and thus have not had the need to use an interpreter. Additionally, for participants with sensory, cognitive, or communication impairments, as well as participants with moderate developmental delay, we allow parents or guardians to assist with the data collection process. Consequently, part of the data represents parental perspectives, observations, or knowledge. As such, parental involvement may have become a confounding variable that is not accounted for in further analyses.
Second, we rely heavily on NC DVRS for recruitment, and we are aware of the risk of not being able to reach potential participants who do not engage with VR services. To mitigate this risk, we regularly visit local VR agencies, local high schools, disability advocacy organizations, and even employers who specifically employ individuals with disabilities to distribute flyers and seek support from these local partners. By the same token, our study is intended to focus on youth with disabilities in a single state, whose economic conditions, public policies, education system, and geographical features inevitably impact the likelihood of individuals seeking and/or retaining employment. Therefore, findings of this study may not be generalizable to other states.
Lastly, despite all the efforts and good intentions, we are aware of the possibility that we may not meet the goal of recruiting 300 survey participants by the end of the project. As we believe our approach to recruitment reached saturation in surrounding areas, and we do not have the capacity or resources to expand geographical reach, we will supplement Aim 1 with secondary data analysis of the NC Case Service Report data that the NC DVRS submit to Rehabilitation Services Administration (RSA-911). We will restrict the secondary data analysis sample to age 18 to 22, identify comparable variables from the RSA-911 dataset, and generate a current portrait of rehabilitation services received and employment outcomes among the population of youth with disabilities in NC. This portrait will help us gauge the representativeness of our sample and provide an anchor for our interpretation of the employment trajectories generated from the survey data.
Conclusions
Despite facing inherent challenges in recruiting and retaining participants from this often hard-to-reach population, our study has benefited from innovative strategies, dedicated partnerships, and meticulous data collection efforts. Through the invaluable contributions of both participants and project staff, we have gained profound insights into the realities, aspirations, and needs of young people with disabilities, underscoring the importance of effective marketing and collaborative research approaches.