Abstract
Sexually transmitted infection (STI) services, including screening, treatment, and counseling among youth, remain suboptimal. In the midst of increasing incidence of bacterial STIs, alarming STI disparities, and persistently low testing rates among youth, solution-focused and action-oriented research with youth is needed. To identify solutions to STI testing barriers, we conducted three participatory ideation workshops with 18 youth, 10 key stakeholders who work with youth, and 8 social design graduate students. In response to prompt questions asking “How might we” address a testing barrier, participants generated as many ideas as they could on small pieces of paper. The brainstorming sessions produced 702 brainstorm idea sheets that were then qualitatively analyzed through pile sorting by three team members (including two youth) with each pile representing a priori themes (from the “How might we” probe) or emergent themes. Ten themes were identified corresponding to three domains: (1) improving the testing experience (improving transparency in the testing process, increasing trust in privacy, alternative testing options, and providing incentives/rewards for testing), (2) addressing the clinic space (multi-service spaces, appealing physical clinical space, and providing waiting room activities), and (3) reframing STI testing (normalizing STI testing, the clinic as a supportive environment, and youth leadership to promote and support STI testing). These findings move beyond identifying barriers and motivators to STI testing among youth and focus on the generation of possible solutions. By engaging youth in the development of solutions to STI testing, solutions that may be better-utilized and more acceptable to youth may be developed.
Introduction
S
Regular STI testing, regardless of symptoms, is an integral step in the process of treating identified infections and preventing the spread of infections. 5,6 Despite the risk of STIs, STI services, including screening, treatment, and counseling, among youth remains suboptimal. 7,8 In a recent national survey, only 16.6% of females and 6.1% of males between the ages of 15–25 years reported having been tested for STIs in the past 12 months. 9 Given the increasing incidence of bacterial STIs and persistently low testing rates among youth, solution-focused and action-oriented research and provider guidelines are needed.
Despite a substantial body of knowledge on barriers 9 –15 and motivators 10,11,13,16 to STI testing among youth and the recommendations that have followed, 12,17 –19 there has been little effort made toward collecting perspectives from youth and other key stakeholders regarding solutions to address these barriers and improve STI testing rates among youth. Evidence suggests that many policies and programs targeting youth are more acceptable and impactful when involving youth's input during the entire development process. 19 –22 That is, the idea that engaging youth not just in research on attitudes toward the testing experience but also in the development of positive, unique solutions to STI testing may aid in generating solutions that are better utilized and more acceptable to young people themselves.
In collaboration with youth voice, social design (the use of the design process to bring about social change) may foster the development of new ideas or solutions to public health problems. Social design utilizes a human-centered and participatory process to understand and define social problems, identify opportunities and generate ideas, and make tools that support positive change. 23,24 Ideation is one phase of the larger social design process that can serve as a tool for exploring potential opportunities to address complex problems. 23 The goal of this study was to engage youth, key stakeholders in healthcare who work with youth, and students in social design in a participatory ideation, or brainstorming, process to identify creative solutions to overcome STI testing barriers.
Methods
This study was conducted by a community, governmental, and academic partnership in Baltimore, Maryland. Partners consisted of a youth advisory council comprised of 12 youth living in Baltimore, the Baltimore City Health Department, the Johns Hopkins University School of Medicine (JHSOM), and the Maryland Institute College of Art (MICA). Approval for all study procedures was provided by the JHSOM. Due to the small sample size, personal characteristics of the participants were not collected.
Formative research
As part of the partner's efforts, the Johns Hopkins Center for Child and Community Health Research and MICA Center for Social Design conducted a social design practice-based studio course with social design graduate students over 1 year to identify and implement structural interventions to improve STI testing for youth at local public health STI clinics. The studio started with a formative phase to teach students about STIs and STI testing among youth. Students completed a literature review, met with experts (i.e., researchers, healthcare providers), conducted workshops with two groups of youth to discuss STI testing barriers, and conducted a brief survey about STI testing with 31 predominately African American youth attending a sexual health and youth leadership conference. During these activities, students recorded data points (e.g., direct quotes, behavior and interaction observations, and relevant statistics from secondary sources). Next, students grouped data to identify underlying patterns and themes across the data points collected from the different environments. Finally, in order to guide the next phase of solution-generating ideation workshops, students looked for the “why” that was driving the patterns in each identified theme to help identify an “insight.”
The process resulted in the identification of four insights into STI testing among youth: (1) despite many STI testing options, youth are scared of the testing process and getting results, which stops them from accessing these resources; (2) the first impression of a clinic's safety, hygiene, and comfort can affect a youth's willingness to get tested; (3) long waits for service and test results influence feelings of fear and anxiety during the testing process among youth; and (4) youth value anonymity and privacy.
Solution-generating ideation workshops
Three participatory ideation, or brainstorming, workshops were held with 18 predominately African American youth participating in a nonhealth focused youth organization, 10 key stakeholders who work with youth (i.e., clinic staff, sexual health programming staff), and the eight social design graduate students enrolled in the social design practice-based studio course. The latter group, many of whom are youth themselves, served as facilitators for two of the workshops. The graduate student workshop was facilitated by the social design practice-based studio course instructor.
“How might we” statements were generated from the four insights into STI testing that posed generative, open-ended questions to guide the ideation process 24 : (1) How might we clarify the testing process to reduce fear and anxiety? (2) How might we design a safe and inviting clinic space that encourages youth to get tested? (3) How might we make the waiting periods before, during, and after testing a positive and comfortable experience? and (4) How might we make a testing process that respects youth's privacy?
During each workshop, participants were asked to sit in small groups of four to six people. For each “How might we” statement, individual participants generated responsive ideas that they drew on a small sheet of paper and labeled with a short title. After generating an idea, the participant read their idea out loud and then moved on to their next idea. The small groups engaged in this activity simultaneously for 5 min per “How might we” statement with the goal of building on or being inspired by ideas stated out loud by others, producing a high quantity of idea brainstorms.
Analysis
The facilitator marked each small sheet containing a brainstorm idea to indicate the group within which it was produced (youth, key stakeholder, or social design graduate student). Individual ideas were then pile sorted by three team members, two of whom were youth aged between 19 and 23 years. The three team members discussed placement of the ideas into separate piles representing a priori themes (i.e., from the “How might we” questions posed) or emergent themes (i.e., inductively derived from “How might we” responses across the questions posed). 25 Variability within themes were considered by participant type (youth, key stakeholder, and social design graduate student).
Results
The brainstorming sessions produced 702 brainstorm idea sheets—369 ideas from youth, 226 ideas from key stakeholders, and 107 ideas from social design graduate students. The ideas were sorted into 10 a priori and emergent themes within three domains: the testing experience, the clinic space, and reframing STI testing (Table 1).
STI, sexually transmitted infection.
Testing experience
Showing the testing process
To improve transparency in the testing process, youth and key stakeholders brainstormed the need to improve youth's understanding of the overall testing process and increase transparency in specific areas of the testing process. Youth suggested that peers should work with clinics to create YouTube videos that take the viewer through a typical testing experience at the clinic and explain what happens along the way. Youth and key stakeholders brainstormed that clinics create and use process maps (e.g., as posters, wall or floor decals, client checklists, apps) that visually explain the steps that will occur at the visit. Other suggestions included providing specific information on wait times until being seen and how long it will take for a client to receive results (e.g., through an app). Youth also suggested online sites should allow peers to rate their experiences with clinicians so that youth can see youth-generated ratings of the clinicians.
Increasing trust in privacy
Youth's brainstorms regarding privacy related to privacy both between the client and the clinician and the client and others in or around the clinic. The ideas demonstrate youth's desire to have as little information shared with the clinician and staff as possible, and ways for them to feel safe that what is being said in the visit cannot be overheard by others in the clinic (e.g., through soundproofing offices and speaking in low voices). Several youth also provided examples of ways to remain hidden as a client when asking general questions to staff or clinicians (e.g., through use of screens or “confessional” booths). Youth and key stakeholders brainstormed using oaths or contracts between the clinicians and client that clearly outline what information is needed, why the clinician needs the information, what will be done with the information, and the clinicians promise (via signature) to otherwise keep everything private.
Alternative testing options
Alternative testing options that simplified the testing process, reduced concerns around privacy, and reduced the amount of time a client was required to be at the clinic were suggested by both youth and key stakeholders. Youth and key stakeholders suggested using technology, including apps or websites, to allow a client to complete registration forms before arriving at the clinic or receive results via a kiosk in the clinic, text, or app messaging. Self-testing options were also brainstormed, and included ideas for pickup and drop off kiosks in the clinic and at-home testing kits.
Providing incentives/rewards for testing
All participants suggested incentives at time of testing (e.g., food or drinks, small gifts, money, coupons to local stores, affirmation cards). Many also suggested that access to additional services such as food pantries serve as an incentive. A “punch card” program that provides a gift after a certain number of testing visits or raffles for periodic drawing for a larger prize were also suggested.
The clinic space
Multi-service spaces
The use of clinic space for other purposes included: (1) providing nonhealth-related services in the clinic space and (2) pairing STI testing with other health services in the clinic. Youth frequently brainstormed using clinics as multi-use spaces that included hair salons, nail salons, laundromats, cafes or coffee shops, and massage services. Key stakeholders and social design graduate students brainstormed multi-use spaces for clinics also, including having a prayer room, a library, and a gift store. Key stakeholders also suggested providing other health services with STI testing (e.g., sports physicals).
Appealing physical clinical space
Youth mainly suggested the desire for comfortable, clean, and colorful clinic spaces, including clean and comfortable seating options (e.g., couches, nice chairs, bean bags, and lounge chairs) and colorful floors. Youth also suggested decorations such as flowers, seasonal decor (e.g., Christmas trees), and artwork on the walls (e.g., client-created artwork via paint options such as chalkboard paint that can be drawn on by clients and removed each day). Youth and key stakeholders brainstormed improving the testing experience by providing clean clinic spaces, including clean floors, equipment, bathrooms, and a nice, nonchemical smell. Key stakeholders suggested colorful walls, while youth suggested colorful tile flooring.
Providing waiting room activities
Youth overwhelmingly suggested adding activities as ways to improve the clinic waiting room, including having games available to play (e.g., video games, trivia, cornhole, outdoor play equipment), showing movies or videos (e.g., funny “try not to laugh” videos that are also informative about health), playing music, having relaxation areas (e.g., massage chairs, relaxing music), art areas (e.g., the ability to make condom art), areas for young kids to play, areas with Wi-Fi, and computer/phone charging stations.
Reframing STI testing
Normalizing STI testing
Youth, key stakeholders, and social design graduate students recommended incorporating STI testing into the school environment, specifically through events that promoted STI testing at a clinic (i.e., to receive extra credit, school field trips to a clinic) or through school-based testing events where everyone is tested. All participant types also suggested to reframe testing through material that “showed off” that the person was tested. For example, one youth brainstormed a sticker that says “Tested & Proud” that could be worn to celebrate getting a STI test. To encourage STI testing generally, one social design graduate student recommended changing the current language of STD or STI test to a “sexual health check.”
The clinic as a supportive environment
Youth and key stakeholders emphasized the need for the clinical environment to be welcoming and supportive. This was demonstrated through the suggestions for supportive interactions among youth and clinicians and staff, as well as by the messaging in the clinic space that is motivational and promoting of positive self-esteem. Youth provided ideas around welcoming, friendly staff, and suggested placing a staff member in the clinic whose sole responsibility is to help clients feel comfortable (as opposed to registering clients and doing other tasks). Youth also suggested using inviting tones and being somewhat lighthearted in exchanges by telling jokes and being relaxed. Other youth suggestions also focused on materials within the clinic space that can promote support through motivational sayings or reassuring messaging (i.e., a poster that says “everything will be ok”). Key stakeholders suggestions also focused on friendliness of staff and clinicians, the importance of not being rude, and the use of “ask me” buttons by staff members who can encourage youth to ask questions.
Youth leadership to promote and support STI testing
Key stakeholders and the social design students suggested increasing youth peer leadership and outreach to promote STI testing by youth at the testing clinic, as well as outside the clinic in spaces such as schools and the mall. It was suggested that these peer leaders be available in these spaces to provide information about testing and answer questions from their peers, be available online to promote testing and talk with their peers, and be employed and compensated appropriately. Youth provided two ideas for youth leadership, including having their peers provide information about STI testing in various spaces.
Discussion
Through participatory ideation workshops conducted with youth, key stakeholders in healthcare who work with youth, and social design graduate students, we identified potential solutions to inform interventions aiming to improve STI testing among youth and implemented solutions in local STI clinics. For example, colorful process maps were created for each public STI testing clinic to inform clients about the testing process, and new registration cards were created to provide more detailed information about what to expect at the visit. In addition, colorful signs matching the process map design were created to replace older signs and add color to the clinic. These findings therefore move beyond identifying barriers and motivators to STI testing among youth and focus on the generation of solutions. By engaging youth in the development of possible solutions to STI testing, solutions that are more acceptable to youth may be developed and better utilized.
Lack of transparency about the testing process, beginning with knowing where to get tested and how to make an appointment, is a barrier for youth that may prevent or delay testing. 13,26,27 In this study, online or app interventions were suggested to allow youth to virtually experience a testing visit before going to the clinic themselves. With the rapid growth of Internet and mobile phone use over the past 15 years among persons of all ages, 28 technology presents opportunities for extensive reach of information. Mobile health phone interventions are increasingly being used for the prevention and care of STIs, including promoting prevention messages, 29 facilitating test result notifications, 30,31 and reducing the time to chlamydia treatment. 30 Importantly, use of online and mobile technologies has demonstrated potential for reaching youth most in need of sexual health information. 32,33
Youth's concern about privacy and confidentiality are also leading barriers especially among younger youth. 34,35 Research has demonstrated that healthcare providers who take time to explain confidentiality to young patients increase trust in the service, reduce anxiety, and increase the likelihood of return visits. 36,37 Regarding privacy, youth and key stakeholders suggested using physical structures (e.g., booths) and oaths or contracts using clear language about what information is being collected, why it is collected, and what will be done with that information to ensure that privacy is maintained. Improved transparency in the testing process may also reduce concerns about confidentiality and privacy, as information regarding what will occur at the visit will be clear, and youth may develop more specific questions regarding concerns not addressed.
This study's finding that participants desired a welcoming and supportive clinic space is consistent with other research demonstrating that youth want healthcare providers to be respectful, supportive, honest, trustworthy, and friendly. 13,38,39 All need to be trained on the specific needs of youth, such as their developmental needs and unique social and structural challenges. Clinicians should also be trained on adolescent health and development and adolescent health competencies to improve social connectedness with youth, perceived support, and sensitivity. 40,41
Youth's preference for having a physical space that is clean, colorful, and comfortable is consistent with findings from a recent systematic review of youth perspectives on youth-friendly healthcare. 42 The desire for age appropriate clinic space includes, as noted by our participants, television, games, and art stations in the waiting room. Youth also desired space that was clean and with comfortable seating, such as lounge chairs or bean bags, consistent with youth's views from other studies. 39,43,44
Expanding testing into a greater variety of healthcare and nonclinical settings provides one way to normalize the process of STI testing, as has been done with HIV testing. 45 Youth and key stakeholders identified the school setting as an important setting in which to offer STI testing. As of 2016 in the United States, however, only five jurisdictions are performing school-based STI screening on a large scale. 46 Increasing peer education provides another way to normalize testing. Reviews have highlighted numerous models of peer education that demonstrate significant positive effects on sexual health knowledge, attitudes, and sexual health outcomes, 47,48 and new models involving technology (e.g., text messaging interventions) demonstrate acceptability and feasibility. 49 Ways in which youth themselves and peer educators utilize these technologies to provide individual or group support for STI testing should continue to be explored.
This study has a number of limitations. The sample size of participants who generated brainstorm ideas was small. Future work would benefit from replicating this activity with more youth and key stakeholders that work with youth. This study involved a nonrandom sample of participants who were involved in preexisting groups in one city. Additional research with youth recruited individually through other methods would assist in furthering our understanding of ways to improve STI testing. With these limitations in mind, study results offer insights into the solutions to improving STI testing among youth.
Footnotes
Acknowledgments
This research was funded by the Centers for Disease Control and Prevention Community Approaches to Reducing STDs (Grant No. 1U22PS004541-03). The authors thank the many partners collaborating on this work, including the UChoose Youth Advisory Council, Baltimore Connect to Protect, Y2Connect, the Baltimore City Department of Health Bureau of HIV/STD Services testing and outreach staff, the Baltimore City Department of Health Bureau of Maternal and Child Health, and the Teen Pregnancy Prevention Initiative.
Author Disclosure Statement
No competing financial interests exist.
