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. Author manuscript; available in PMC: 2025 Jul 1.
Published in final edited form as: Public Health Nurs. 2024 Apr 4;41(4):806–814. doi: 10.1111/phn.13314

Lessons Learned from Conducting a Community-based, Nurse-led HIV Prevention Trial with Youth Experiencing Homelessness: Pivots and Pitfalls

Diane M Santa Maria 1, Higinio Fernandez-Sanchez 2, Adey Nyamathi 3, Marguerita Lightfoot 4, Yasmeen Quadri 5, Mary Paul 6, Jennifer Torres Jones 7
PMCID: PMC11234818  NIHMSID: NIHMS1980067  PMID: 38573238

Abstract

Objective.

This article highlights key lessons learned while conducting a nurse-led community-based HIV prevention trial with youth experiencing homelessness (YEH), focusing on sexually transmitted infections testing and treatment, intervention sessions, community partnerships, and participant recruitment and retention.

Design.

The insights and experiences shared aim to inform future research and the design of interventions targeting populations at high risk, particularly when facing unanticipated challenges. By addressing these areas, the article contributes to the decision-making for the design and delivery of effective strategies to improve the health outcomes among marginalized populations.

Results.

The findings underscore the importance of flexibility and active participant engagement, cultivating strong relationships with community partners, utilizing technology and social media, and fostering a diverse research team that represents the heterogeneity of youth experiencing homelessness across race/ethnicity, gender identity, sexual orientation, and lived experiences.

Conclusions.

These recommendations aim to enhance participant access, engagement, and retention, while promoting rigorous research and meaningful study outcomes for YEH.

Background

Homelessness remains a pervasive social, political, and health issue around the globe. In the United States, in 2022, more than half a million people experienced homelessness (National Alliance to End Homelessness [NAEH], 2023), with certain minority groups, including Indigenous people, people of color, and youth disproportionately affected. Among these populations, youth under 25 years accounted for 5% of the total population experiencing homelessness (NAEH, 2023); though this is likely a gross underestimation of the actual number of youth experiencing homelessness (YEH). These YEH face an increased risk of oppression, discrimination, and violence due to the intersectionality of multiple social considerations (Philippe-Benoit, et al., 2023), including housing instability, food insecurity, and social disconnection. Moreover, accessing healthcare and preventive interventions poses unique challenges for YEH, further exacerbating their health disparities (Nihcols & Malenfant, 2022; Pitcher et al., 2019).

In the city of Houston, Texas, there has been a noticeable rise in the prevalence of homelessness. The Coalition for the Homeless of Houston conducted their annual Point-in-Time Count in 2023, which provided valuable insights into the extent of this issue. The count revealed that over 3,200 individuals were experiencing homelessness in Houston during that time, with approximately 20% of them being youth under the age of 24 (Coalition for the Homeless, 2023). In an effort to test HIV prevention strategies among youth while homeless, the Come As You Are (CAYA) randomized trial was conducted (Santa Maria et al., 2021). The trial aimed to assess and address the cognitive appraisals, health-seeking behaviors, knowledge, and coping strategies of YEH, as strategies to prevent HIV. Despite anticipating certain challenges, the study team encountered two significant unforeseen circumstances that necessitated shifts in strategies that were tested along the way.

The first disruption occurred four months into participant enrollment for the CAYA study when the World Health Organization (WHO) officially declared COVID-19 as a global pandemic. This declaration led to a suspension of in-person recruitment activities and study visits for a duration of eight months. Shelters closed their doors to non-staff to reduce the risk of outbreaks. Youth were unable to travel to other locations if they wanted to stay at the shelter. Subsequently, during the final year of recruitment, the largest recruitment site shelter underwent a transitional phase wherein the existing facility was completely demolished to make way for construction of a new campus. The shelter relocated to a temporary building across town, which resulted in a near full turnover of shelter residents and reduction in census cap which reduced the number of new youth encountered. These unanticipated events, coupled with the expected challenges of conducting research among marginalized and hard-to-reach populations, served as valuable learning experiences for the study team.

This article focuses on the lessons learned from the CAYA study, specifically regarding sexually transmitted infections and HIV (STI/HIV) testing and treatment, intervention sessions, community partners, and participant recruitment and retention. The aim is to share valuable insights and experiences that can inform future research and interventions targeting YEH, especially during unanticipated obstacles. By addressing these key areas, we aim to contribute to the development of a cadre of effective strategies to improve community-based research and the health outcomes of this population in situations of uncertainty.

In the following sections, we explore the challenges encountered during the randomized trial and the strategies employed to overcome them. The lessons learned highlight the importance of considering the unique needs and circumstances of YEH during intervention design and while engaged in research. By adopting a participant-centered approach, establishing strong community partnerships, and employing innovative engagement strategies, we aimed to enhance the engagement, recruitment, retention, and overall integrity of the study implementation. The insights gained from this research can inform future efforts to address the health disparities faced by YEH and contribute to the development of more equitable research strategies and impactful interventions.

Methods

Design

The randomized wait-list controlled trial involved implementing a nurse-led, community-based HIV prevention trial with youth experiencing homelessness (CAYA). A comprehensive description of the study protocol has been published elsewhere (Santa Maria et al., 2021). The intervention was designed to prevent HIV among youth experiencing homelessness. The intervention was informed by the Comprehensive Health Seeking and Coping Framework (CHSCF) and focused on establishing a collaborative relationship between the nurse and the youth (Nyamathi, 1989). The intervention consisted of six face-to-face sessions with a nurse, a behavioral assessment and feedback app, and booster calls (Santa Maria et al., 2021).

During the face-to-face sessions, the nurse used motivational interviewing and shared decision-making strategies to assess the mental health, substance use, and housing needs of the youth. The sessions included an HIV risk profile and a preexposure prophylaxis (PrEP) eligibility assessment. The nurse collaborated with the participants to set HIV prevention goals and develop strategies to overcome barriers. The intervention also included the use of a daily ecological momentary assessments completed by the participants on a study-issued smartphone (Santa Maria, et al, 2018). The data from the assessment were used to generate a behavioral goal interface that synced to provide a visualization of the participants’ progress towards their chosen HIV prevention goals (Ramsey, et al, 2010; Scott-Sheldon, et al, (2010).

The control group received usual care from the recruitment sites, which included basic health assessments, mental health counseling, and referrals. Data collection included baseline and follow-up surveys, HIV and STI testing, and smartphone-based daily ecological momentary assessments. The surveys assessed demographics, psychosocial factors, sexual risk behaviors, substance use, and mental health. HIV and STI testing was conducted at several time points throughout the study.

Approval from the Institutional Review Board (Committee for the Protection of Human Subjects HSC-SN-18-0993) was obtained in November 2018. Study enrollment began in November 2019 and was completed in May, 2023 with a total recruitment of 450 individuals YEH. Several key modifications were made to the research procedures due to the ongoing COVID-19 pandemic. The lessons learned from these changes are discussed below.

Results

Lessons Learned from Research with Youth Experiencing Homelessness

Starting in March, 2020 lockdowns and stay-at-home orders were implemented locally and the shelters serving youth experiencing homelessness drastically restricted visitations of non-staff in an effort to mitigate the spread of the COVID-19 infection. Since the implementation of the study procedures was dependent on access to youth at the shelters for recruitment, implementation of the intervention sessions, baseline and follow-up surveys, and STI/HIV testing, many modifications to the protocol and procedures were needed to assure study components could continue. The way intervention sessions were delivered was changed. We attempted various ways of providing the follow-up surveys and HIV/STI testing. We changed the way we interacted and assisted our community partners. Finally, we had to test various new strategies to recruit and retain participants. The lessons learned from these changes are discussed below.

Intervention Sessions

Flexibility has been recognized as a crucial aspect during times of crisis, as highlighted by Kroese et al. (2021) and Karmakar et al. (2020). In response to the numerous challenges encountered in delivering the intervention before, during, and after the pandemic, our research team employed a range of strategies. It was observed that participants exhibited greater receptiveness and openness to sessions when they were conducted in a consistent location, such as the same room and were held in-person. However, due to pandemic restrictions that hindered accessing youth face-to-face and the loss of the assigned space for our team at shelters, the nurses had to constantly adapt and move between different office spaces once they were allowed back on campus.

It became necessary to transition from only conducting in-person intervention sessions to utilizing video or phone sessions to accommodate participants and staff who were experiencing COVID-like symptoms or needed to quarantine. To accommodate the needs and preferences of participants and keep with the timeline of delivery of the intervention sessions, alternative options were offered including conducting sessions over the phone or via video conference. Research suggests that it is helpful to provide participants with both phone and video options, with video conferencing being identified as the preferred method of communication (Chen et al., 2022). While virtual engagement has been demonstrated as a viable solution (Riley et al., 2022), it was observed that young experiencing homelessness (YEH) were less focused during phone or video calls. They often requested sessions to be delivered more quickly and during evenings and weekends. To address these challenges, we customized sessions to meet participants’ specific needs, allowing them to combine the content from multiple sessions at once. Moreover, the research team also increased their flexibility by offering evening and weekend sessions to accommodate those youth who were unable to participate during regular Monday through Friday business hours.

However, phone calls were not consistently successful as a method of communication with participants. Although all participant were provided with study-issued phones, approximately one-third of the participants reported not having their phone by the end of the study due to it being broken or stolen. Challenges inherent to working with YEH such as lost, stolen, or broken study phones made it difficult for us to reach participants, particularly for follow-ups. As an alternative to calling participants on their study-issued phone, social media platforms proved to be an effective means of communication with the youth. Primarily, we utilized Instagram and Facebook to contact participants to set up intervention sessions, deliver surveys, and set appointments for STI/HIV testing.

In addition, a third alternative involved inviting participants to attend sessions at the School of Nursing. To do this while keeping participants and staff safe from exposure to COVID-19, an extensive symptom tracker was implemented. Staff would connect with the participant the day before or the day of to assess for COVID-19 symptoms or exposures. If none were noted, the visit would occur. If there was reasonable concern, the visit would happen virtually or be rescheduled. To further facilitate participant engagement and retention, a contract was secured with Uber Health to provide transportation to address the reduction and restrictions of public transportation that happened during the pandemic. These approaches aimed to maximize opportunities to keep participants actively involved in the research process (Leavens et al., 2019).

After consultation with our Youth Working Group and investigative team, the nurses began to offer combined sessions when personal and environmental factors prevented a participant from completing the remaining intervention. These factors included loss of access to the shelter due to lock-downs implemented for transmission mitigation. Other circumstances included if a participant knew that they would be leaving the area before the final session. Finally, a combined session may be offered when a participant was unreachable for several weeks and staff were eventually able to reengage. Youth provided feedback that sessions needed to be flexible enough to fit into their work and education schedules. Therefore, sessions were provided in combination when appropriate using the shared decision-making strategy key to the intervention.

By maintaining flexibility and adopting innovative methods for session delivery, we were able to successfully continue implementing the intervention remotely while accommodating the specific needs of participants and abiding by local restrictions. It has been well-documented that researchers can enhance inclusivity and prioritize participants by considering their preferences, requirements, and availability (Frank et al., 2014). This participant-centered approach not only promoted increased satisfaction among participants but also contributes to the overall intervention delivery fidelity, and improved quality of the collected data.

HIV/STITesting and Treatment

As part of the study protocol, participants were asked to get tested for HIV, Chlamydia, Gonorrhea, and Syphilis at baseline, 3, 6, and 12 months. If a participant had received testing in the last week, those results were confirmed and only additional tests were conducted. At our largest recruitment and implementation site, a residential shelter equipped with an on-site clinic, regular updates were provided to the clinic regarding HIV/STI test results and treatment when consent to share the results was received from the participant. Existing evidence has shown the advantages of having health clinics within shelters, such as improved access to behavioral health resources (Kalahasthi et al., 2022), opioid reversal treatment (Dahlem et al., 2016), and psychiatric support (Nielsen et al., 2018). By working together with the shelter clinic for residents already under their care, we were able to reduce the cost of inconvenience of over-testing and provide seamless coordination of care to increase timely access to STI treatment when needed.

While testing was provided by the study staff, treatment for STIs was coordinated through referrals and patient navigation. While the shelter clinic was able to provide STI treatment to most participants who were also residents, some participants expressed a preference for seeking STI treatment elsewhere. Their decision was primarily motivated by the fear of other residents discovering their STI status, which could lead to judgment or discrimination. In such cases, our team promptly assisted participants in finding alternative off-site clinic options at several federally qualified health centers in the area. Specifically, we aided participants in locating suitable clinics, scheduling appointments over the phone, and arranged Uber Health rides to and from the clinics. Although transportation expenses increased the overall costs of the research, it was deemed necessary to ensure that our participants could access essential and timely treatment. We concur with Murphy (2019), who argues that transportation in healthcare should be regarded as a matter of equity and social justice rather than a privilege.

Early in the pandemic (March-May, 2020), the team tried to “wait out” the shelter closures and stay-at-home orders believing that they would be short-lived. After several weeks and no end in sight, we pivoted to mailing home test kits to some participants for Syphilis, Chlamydia, and Gonorrhea using commercially available testing kits (July, 2020). However, this option proved to be ineffective for our youth population. Participants expressed nervousness about using lancets to prick their fingers, encountered difficulties in collecting blood and urine samples, and encountered challenges in registering and labeling the sample tubes to be sent to the lab. These experiences diverged from research conducted with other at-risk young individuals, which demonstrated that home-based testing was straightforward and sustainable (Shih et al., 2011).

In addition to the aforementioned difficulties, our youth population faced additional barriers to home-based screening. Some participants lacked a reliable address to receive the mailed kits, had concerns about privacy when the test kits arrived, and did not have a safe and comfortable environment in which to perform the testing. These barriers align with the findings of Melendez et al. (2021), who reported that unstable housing and language and literacy barriers pose challenges to at-home screening. However, they also suggested that despite these challenges, at-home screening remains a viable alternative to clinic testing.

While the mailed STI/HIV self-testing kits did not improve uptake among this population during the lock-down of the pandemic, we continued to use study staff assisted testing and assisted participants with mailing kits to the lab. Study staff would assist the participant in obtaining the specimen, labeling the samples, sending to the lab, and registering their account with the lab to access the results. This allowed participants and study staff to view the test results. Those results could then be accessed when seeking treatment at a clinic for the STI without the participant needing to be retested.

We found that offering testing at more youth-serving organizations and bringing YEH to our office proved to be useful strategies. For Chlamydia and Gonorrhea urine testing, we used a commercially available test kit. Staff assisted participants in the collection of the urine sample, transferring it to test tube, and mailing it to the company. This method allowed participants to have easy access to their results through their account. We did not change the procedures for the point-of-care blood draw tests (HIV and syphilis). We also added additional community sites to meet up and used ride-share (UBER Health) to bring participants to our office for testing.

Community Partners

Establishment of long-term community partnerships played a pivotal role in the successful implementation of our intervention despite the challenges faced throughout the pandemic. Extensive research has shown that cultivating and sustaining community partnerships facilitates the exchange of ideas between researchers and the community (Carson et al., 2021), while also ensuring that research and interventions are perceived as meaningful and relevant by community partners (Brookman-Frazee et al., 2016; Swann et al., 2020).

To promote trustworthiness, the team actively engaged with our community partners using a multi-method approach throughout the project. While commitments from executive leadership was essential, buy-in from the gatekeepers who interact with YEH daily was equally critical. The research team regularly participated in annual events focusing on health and homelessness, attended fundraising events, and actively contributed to community advisory boards associated with organizations that served young people experiencing homelessness. Additionally, our team volunteered with organizations that provided support to individuals facing homelessness and responded to requests from partners to participate in health fairs and other educational events. Volunteering and attending community partner events allowed for three things: 1) YEH and youth serving organizations became more familiar with the team, which helped build trust over time, 2) it demonstrated that the relationship is mutually beneficial, and we genuinely support the organization’s efforts to meet the needs of YEH, and 3) it facilitated collaboration among youth serving organizations (YSOs) that had not worked closely together. One example is that the study staff serving on a community advisory board. During meetings, representatives from YSOs share ideas about engagement, current trends, fair compensation for engagement, social media engagement strategies, and identified the most needed resources for YEH. After this engagement, YSOs began contacting the team to refer clients to the study which boosted recruitment and enhanced referrals to youth from other organizations.

At the largest site, a residential shelter equipped with an on-site clinic, we maintained regular communication by providing weekly updates to the clinic regarding STI and HIV results and treatment. Importantly, at the shelter, youth could receive credit for attending the intervention sessions as part of their Life Skills program which was used as a point system for access to items in the resource closet. Furthermore, the research team actively attended shelter meetings involving both staff and residents.

Maintaining strong relationships with community partners requires that the relationship is mutually beneficial and consistently nurtured to foster trust and reliability. During the pandemic, we assisted our community partners in accessing county and health department COVID-19 testing and later vaccination distribution. We were able to provide gloves, hand sanitizer, and masks when we secured supplies. Further, we were able to keep organizational staff informed about the trends and best practices for transmission mitigation especially important in congregate living situations. As the project neared its conclusion, we organized events to provide meals and supplies for youth receiving services at each of the partnering site as a gesture of gratitude for their continued partnership.

Participant Recruitment and Retention

In order to address the challenges associated with recruitment and retention in research involving young people experiencing homelessness (YEH) during the pandemic, it was imperative to offer immediate compensation that held meaningful value for them and to adapt research methods to their unique circumstances. Recruitment and retention in research involving YEH has been widely recognized as a complex issue, influenced by various factors such as unstable housing, lack of trust and engagement with the research team, prioritization of survival needs and other competing demands, the absence of perceived tangible benefits, and unpredictable behavior and schedules, and substance use (Forchuck et al., 2018; Garvey et al., 2018). Recruitment and retention were further challenged by the lock-downs and uncertainty of the pandemic when regular and long-standing recruitment sites were closed to the team in an effort to reduce transmission.

To overcome these challenges, we implemented strategies to enhance recruitment and retention. Providing immediate compensation that were meaningful to YEH, such as financial compensation, gift cards, or practical items, like hygiene kits and snacks, proved essential in supporting participation. According to existing literature, it is indicated that providing financial compensation to young people can be done in a suitable manner as long as appropriate precautions are implemented (Afkinich et al., 2020). Additionally, we recognized the importance of adapting research methods to their unique circumstances. This involved establishing flexible scheduling options to accommodate their availability and preferences, providing transportation assistance to overcome barriers related to mobility, and maintaining open and non-judgmental communication to build trustworthiness and foster engagement. The importance of employing creativity to effectively reach and retain hard-to-reach populations has been widely acknowledged in the literature (Hennekam, 2019). It emphasizes the necessity of adapting research designs to accommodate the unique characteristics of the target population and community. It underscores the significance of maintaining flexibility and openness to adjustments throughout all stages of the research process.

Moreover, we recognized the significance of utilizing social media platforms as a means of communication. Social media not only allowed us to contact participants who did not have access to a study-issued phone but also provided a consistent space where participants could reach out or get information when they were ready. According to multiple studies, utilizing the internet and social media proved to be viable approaches for engaging with young individuals (Ford et al., 2019; VonHoltz et al., 2018). The use of social media was paramount to staying connected during the lock-downs when otherwise regularly scheduled study-initiated gatherings and community events were not held. Social media posts allowed for participants to access timely information on resources and stay informed about study related issues and events.

While social media worked well to promote participant retention, it was not ideal for recruitment. Virtual recruiting meant that the study staff did not have face-to-face contact with a participant when screening, consenting, and collecting the baseline survey data. All participants were still required to have an in-person visit to complete the baseline HIV/STI testing, their initial session with the nurse (if in the intervention group), and to receive the study-issued phone. Individuals recruited virtually may have been referred by another participant, referred by a case manager, responded to a flyer posted at a community site, or responded to a post on social media. We were able to recruit youth using social media, but participants that were virtually recruited, were not as engaged in the study as those who had some face-to-face activities.

We began recruiting virtually in October, 2020 and virtual recruitment reached its peak in March, 2021. While study staff continued to accept referrals and responded to calls and social media messages for the remainder of the study, in-person recruitment was the primary recruitment method. A total of 54 participants (12%) were virtually recruited throughout the study and 396 were recruited in person. Youth who were virtually recruited were less likely to complete all of the intervention sessions (65% vs. 76%), complete follow-ups on time (63% vs. 72%), or to be retained in the study overall than those recruited in-person.

It was observed that the majority of youth in the study had access to their own phone. Though it was often only WIFI enabled, it further facilitated communication and study engagement. However, it was essential to have a dedicated staff person responsible for staying connected with participants throughout the study. Unexpectedly, some participants became less responsive when their living situations improved often times due to increased competing priorities such as new employment and school responsibilities.

We were committed to maintaining a consistent and diverse research team to promote recruitment and retention. The team heavily relied on facial recognition when visiting drop-in centers and shelters, enabling them to establish familiarity and build rapport with the participants. Having a team with varying backgrounds, race/ethnicities, sexual orientations, gender identities, and personalities was crucial in establishing connections and promoting trust among a highly diverse group of YEH. By recognizing and addressing these challenges and tailoring our approach to the specific needs of YEH, we aimed to mitigate the barriers to recruitment and retention and maximize their participation in the research study.

Discussion

Recommendations for Research with Youth Experiencing Homelessness

To successfully address the unique challenges inherent to conducting research among youth experiencing homelessness (YEH), it is crucial to acknowledge the potential for encountering significant obstacles throughout the research process. Such obstacles may arise from factors like funding issues leading to organizational changes or shutdowns, pandemics, and the impact of natural disasters on the already vulnerable and unstably housed population. In light of these circumstances, it is important to provide recommendations that can assist researchers and organizations topersevere through such substantial hurdles to maintain the integrity of the research.

Strong Relationship with Community Partners

Establishing strong partnerships with community organizations involves actively participating in events related to health and homelessness, attending fundraising/awareness-building events, and volunteering with organizations serving individuals experiencing homelessness. Maintaining regular communication with community partners, including sharing updates and attending meetings, fosters mutually beneficial relationships and consistency, which builds trust and reliability (Buck et al., 2022; Fregonese, 2018). These strong partnerships offer numerous benefits, including accessing hidden populations, ensuring cultural sensitivity and relevance, facilitating participant engagement and retention, gaining trustworthiness, and promoting sustainability and impact. Community partners provide invaluable local knowledge, advocacy, and ongoing support, leading to increased participation, relevant and translatable findings, and lasting interventions. Using a sharing science approach with communities also ensures two-way communication about the research findings in a way that can be translated into local policy, quality improvement, and further strengthen the partnership. By valuing and involving community partners throughout the research process, researchers can address challenges and contribute to positive social change for YEH in real time.

Flexibility and Providing Alternatives

There is a large emphasis on flexibility and providing alternatives when conducting research with YEH. Researchers need to recognize the dynamic and unpredictable nature of the lives of the youth participating in their studies and adapt research protocols to accommodate their unique circumstances (Ojo-Fati et al, 2017). This includes offering convenient options for testing and treatment, such as on-site clinics or referrals to off-site clinics when necessary, ensuring accessibility and addressing privacy concerns. Additionally, maintaining flexibility in delivering intervention sessions by offering in-person, phone, and video options, and considering alternative locations that are convenient and safe for participants is crucial to promoting recruitment and retention. Teams can accommodate participants’ specific needs by customizing session durations and scheduling sessions during evenings and weekends if more convenient to participants and the community partners. Providing transportation assistance is essential to facilitating engagement and retention. Moreover, providing immediate compensation that hold meaningful value to participants, such as financial compensation, gift cards, or practical items can help youth and the team foster a trusting and caring relationship. Adapting these research methods to the unique circumstances of the population, including flexible scheduling options and open communication is important to building trust and encouraging continued engagement. By incorporating these strategies, researchers can enhance participant access, comfort, and overall research experience, further promoting meaningful and inclusive research outcomes for YEH.

Use of Technology and Social Media

Harnessing the power and reach of technology and social media for conducting research with YEH can break down the barriers among a population that is often hard to find and hard to reach. Recognizing the widespread use of technology among this population and leveraging that use can enhance research engagement and participation. Digital platforms and social media channels, such as Facebook, Instagram, and Twitter, are a means of communication and engagement with recognized effectiveness in reaching and retaining young individuals. These approaches have also been shown to be successful with individuals with mental health issues experiencing homelessness (Strehlau et al., 2017).

A comprehensive social media strategy that includes regular updates, informative posts, and interactive content helps maintain ongoing communication and builds a sense of community especially during times with in-person engagement activities are hampered. Research teams can actively engage with followers, respond to their comments and inquiries, and create a safe space for discussion as well as share study updates, success stories, and relevant resources through social media platforms to keep participants informed and involved.

In addition to social media, consider other digital tools and platforms to facilitate research participation. In our study, we deployed online surveys and remote interviews to overcome geographical barriers and facilitate participation. Furthermore, we leveraged mobile health (mHealth) applications by delivering health-related information, reminders, and personalized interventions as part of our Motivational Monday messages. This ensured that both the intervention and control group youth were engaged in the research study to promote retention.

By collaborating with local service providers, community organizations, and youth advocates, we could use the study-issued phones to deliver specific messages about upcoming events that the community partners wanted to advertise. Further, we could share the team’s upcoming locations so youth knew where to encounter them for follow-up. Utilizing community-based participatory research approaches ensured that our community partners were involved in the entire research process (Campbell et al., 2021). Promoting digital literacy and providing necessary resources to ensure equal access and participation helps to break down barriers to health equity often experienced by YEH. By embracing technology and social media, researchers can bridge communication gaps, increase reach, and engage YEH in research and intervention efforts, ultimately improving their overall well-being and research outcomes.

Diverse Research Team

To ensure inclusive and culturally responsive research with YEH, it is essential to grow and support a diverse research team that approximates the heterogeneity of YEH. This involves actively recruiting researchers, staff, and volunteers from diverse backgrounds, cultivating an inclusive and supportive work environment, partnering with community organizations and universities, and seeking individuals with lived experiences of homelessness, substance use, and mental health needs. Creating a welcoming and inclusive research environment where diverse perspectives are valued is crucial, along with collaborating with community partners to align the research process with the needs and values of the population.

Ongoing training and professional development should be provided to enhance cultural competence, and reflexivity and self-awareness should be encouraged to challenge biases. Respectful and ethical research practices that consider participants’ diverse backgrounds are essential, and diverse team members can contribute to the development of effective interventions that address the unique needs of youth experiencing homelessness. Embracing diversity within the research team enhances the validity and relevance of the research findings for the community and promotes cultural responsiveness. Maintaining a consistent and diverse research team further establishes familiarity, builds rapport, and promotes trust among the diverse youth population, as consistent team members can foster a sense of stability and continuity throughout the research process.

In conclusion, conducting research with youth experiencing homelessness presents unique challenges that require careful consideration and adaptation. Our study highlighted several important lessons learned, the pivots and pitfalls, in the areas of STI/HIV testing and treatment, intervention session delivery, building and maintaining community partnerships, and addressing participant recruitment and retention challenges. We found that while on-site healthcare clinics are valuable, alternative off-site options are necessary to meet the diverse needs of the population, particularly due to privacy concerns and transiency. At-home self-screening methods were not effective for our youth population, highlighting the need for facilitated supportive in-person testing options. Flexibility in delivering intervention sessions, including offering phone and video options, is crucial to accommodate participants’ preferences and schedules. Building strong relationships with community partners is essential for meaningful engagement and sustainability of research efforts. To address challenges related to participant retention, immediate compensation, flexible scheduling, transportation assistance, and the use of social media proved invaluable. Lastly, fostering a diverse research team and utilizing technology and social media platforms are critical for engaging in research with youth experiencing homelessness in order to build trust. These findings provide valuable insights and recommendations for researchers and organizations working with this vulnerable population, ultimately aiming to enhance the quality and impact of research in this field.

Funding Acknowledgements:

Research reported in this publication was supported by the National Institute of Nursing Research of the National Institutes of Health under Award Number R01NR017837. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Contributor Information

Diane M. Santa Maria, University of Texas Health Science Center at Houston Cizik School of Nursing.

Higinio Fernandez-Sanchez, University of Texas Health Science Center at Houston Cizik School of Nursing.

Adey Nyamathi, School of Nursing at UC Irvine.

Marguerita Lightfoot, Oregon Health Science Center, School of Public Health.

Yasmeen Quadri, Baylor College of Medicine Medical Director of the Harris Health System Healthcare for the Homeless Program.

Mary Paul, Retrovirology and Global Health Texas Children’s Hospital/Baylor College of Medicine.

Jennifer Torres Jones, University of Texas Health Science Center at Houston Cizik School of Nursing.

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