Exploring the Sexually Ttransmitted Infection Testing Experiences of Young People through Creative Visual Mapping

Abstract

Background:

Innovative solution-focused research with youth is needed to improve STI testing among adolescents and young adults (AYA).

Objectives:

To identify moments that matter to AYA during the STI testing experience.

Methods:

Five social design graduate students and five youth advisory council (YAC) members independently received STI testing and created journey maps documenting their experience. Social design students assisted YAC members in their map creation during group workshops and one-on-one worktime. Participants completed interviews about their experience utilizing their maps to facilitate responses. We employed thematic content analysis to synthesize textual interview data.

Results:

Participants experienced stress and discomfort throughout the testing process, with three main sources of stress identified: finding a clinic, completing registration forms, and general lack of clarity during the clinical experience. Friendly interactions with providers and staff improved the experience, however. Finally, the physical environment of the clinic space could positively or negatively impact the overall experience.

Conclusions:

Journey mapping may be an important tool for identifying solutions to improve STI testing among AYA.

Sexually transmitted infections (STIs) are a significant health threat to adolescents and young adults (AYA), with AYA between the ages of 15–24 years in the U.S. representing 50% of all new STIs.¹ Despite fairly stable sexual behaviors in recent years in the U.S.² and reductions in teen pregnancies,³ reportable bacterial STIs have increased in this age group.⁴ During 2014–2015, adolescents ages 15–19 years experienced an increase in the number of reported cases of chlamydia, gonorrhea, and primary and secondary syphilis of 2.5%, 5.2% and 10.2% respectively.⁴ Additionally, the common bacterial STIs (chlamydia, gonorrhea, and syphilis) elevate HIV risk, and risk increases with increasing number of STI episodes.⁵

Regular STI testing, regardless of symptoms, is an integral step in the process of treating identified infections and preventing their spread.^4,6 However, despite the risk of STIs, STI screening, treatment, and counseling among AYA remains suboptimal.^7–9 In a recent national survey, only 16.6% of sexually active females and 6.1% of sexually active males between the ages of 15–25 reported having been tested for STIs in the past 12 months; among those 15–19 years, testing in the past 12 months was 6.7% and 2.4%, respectively.⁹ Thus, there is a critical need to improve STI testing among young people.

In order to more deeply understand experiences from the perspective of the people receiving services, the design and customer service industries utilize a tool called customer journey mapping, or experience mapping.¹⁰ The customer journey map tells the extended story of the customer experience, documenting all of the steps or phases in a process, as well as the motivations and emotions of the person seeking services. Journey maps are often informed by service users, but created by service industry professionals. Service users may be more directly engaged through qualitative auto-ethnographic data collection and journey map creation, in which the service user develops an individual map of their personal experience.

Creative representations of experience are known to be beneficial for young people,¹¹ and thus journey mapping may be a useful tool to understand AYA STI testing experiences. The documentation may specifically be used to generate information for the STI prevention community on how to reduce barriers to STI testing for AYA. Additionally, journey maps can provide youth with visual and engaging resources about the testing experience, as reported by their peers. Therefore, this study aims to utilize auto-ethnographic journey map creation to closely examine challenges experienced during the STI testing process as well as positive moments or interactions that were experienced by AYA. The goal was to identify moments that matter in the testing experience from an AYA perspective over the extended course of the testing experience in order to inform interventions for better delivery of STI testing services.

METHODS

Partnership

The present study emerged from the broader efforts of a community-health department-academic partnership working to decrease STIs among youth (15–24 years) in Baltimore, Maryland as part of a 3-year grant, “Community Approaches to Reducing Sexually Transmitted Diseases” (CARS) funded by the Centers for Disease Control and Prevention (CDC). The project was a collaboration between the Baltimore City Health Department (BCHD) Bureau of HIV/STD Services, the Center for Child and Community Health Research (CCHR) at the Johns Hopkins University School of Medicine, and the Maryland Institute College of Art Center for Social Design (MICA CSD), who have a long history of collaboration.

Engagement with the target population – youth ages 15–24 years – was a critical element of the Baltimore CARS program. In the program’s first year, youth were recruited through youth programs and schools in areas of the city experiencing high rates of chlamydia and gonorrhea to join a Youth Advisory Council (YAC) facilitated through BCHD’s Bureau of HIV/STD Prevention Services. During the second year of the CARS program, the CARS YAC partnered with the UChoose YAC, a YAC operating in BCHD’s Bureau of Maternal and Child Health to inform teen pregnancy prevention programming. Initiated by the YAC members in each bureau, the groups merged to form one group focused on sexual and reproductive health among youth, and were co-managed by staff representing both bureaus. The YAC consists of 12 youth who complete sexual and reproductive health leadership training, meet twice a month to engage in partnership activities (i.e., identification of partners priorities, development of materials for partner-developed interventions, development of social media materials), and conduct peer outreach at local youth and/or community events.

To assist the youth and partner efforts, MICA CSD developed a practice-based studio where graduate students applied the human-centered design process to answer the question “How can we improve STI testing among youth in Baltimore?” It was through this class that YAC members participated in a 6 month auto-ethnographic journey mapping experience to document their STI testing experience in order to inform intervention development. The Johns Hopkins School of Medicine Institutional Review Board approved all partnership activities.

Journey Mapping Process

As the first homework assignment of the practice-based studio, MICA CSD students were instructed to get tested for STIs and make a journey map of their experience. Students were purposely not given information about where or how to get tested in order to mimic the experience they would have if they decided on their own that they needed to seek testing. Students were required to make a visual representation of their experience, but were allowed to do so however they wished, and were told they were not required to share any personal details, such as test results, on their journey map or in conversations about their work.

Students from the practice-based studio class were then given the charge of creating a journey mapping workshop for YAC members and providing follow-up one-on-one support to each YAC member to help them create a journey map of their experience once they completed their STI testing. Five YAC members (ages 15–17 years, all African American females) elected to participate in the process. MICA CSD students (males and females, ages 23–29 years, various race/ethnicities) hosted four workshops in a MICA CSD studio. Each workshop included icebreakers to foster relationship building, dinner, mini-design lessons developed by a MICA CSD student to facilitate the creation of the YAC member’s journey map, and partner work time to develop the YAC member’s journey map (Table 1).

Table 1.

Journey Mapping Workshop Descriptions

Workshop 1: Introduction to Journey Mapping Project
Workshop Objectives  Build relationships between MICA   CSD students and YAC members  Introduce journey mapping  Create data collection plan for testing journey	Schedule/Activities  10 minutes: Introductions and icebreaker game  20 minutes: Overview of project   Review objectives and timeline of project  Review written consent forms  20 minutes: Dinner  5 minutes: Develop ground rules  20 minutes: Journey mapping mini-lesson—What is Journey Mapping?   Define “journey” (e.g., start and end points)   Brainstorm data collection opportunities (e.g., what to pay attention to in journey, how to document)   Review sample (non-STI testing) journey maps, individually documenting what is liked/ disliked about examples  30 minutes: Practice!   Individually, YAC members walk to a nearby establishment and make a purchase (e.g., snack)   YAC member, with MICA CSD partner help as needed, hand draws a journey map of experience  10 minutes: Circle up and share out   Share practice journey map with group  5 minutes: Wrap-up
Workshop 2: Journey Map Content and Sketching
Workshop objectives  Build confidence in drafting journey map  Explore important information to include in the journey map	Schedule/activities  5 minutes: Overview of workshop  15 minutes: Icebreaker game  20 minutes: Dinner  20 minutes: Journey mapping mini-lesson—Sketching Strategies   Creating a quick sketch—you don’t have to be an artist to draw an idea!   How to expand upon experience by providing environmental considerations and social interactions  60 minutes: Partner work   Debrief about STI testing experience   Discuss aspects of testing experience that YAC member wants to include in journey map  Sketch first draft of journey map
Workshop 3: Journey Map Layout and Visual Design
Workshop objectives  Introduce visual communication  Connect YAC members with the tools they want/need to tell their story  Identify final journey map format	Schedule/activities  5 minutes: Overview of workshop  15 minutes: Icebreaker game  20 minutes: Dinner  30 minutes: Journey mapping mini-lesson—Layout and Visual Communication   Discuss the use of colors, typography, and other materials in visual communication  Explore various mediums through which the journey maps may be created (e.g., by hand using drawings or other materials, in PowerPoint, in design software)   Individually, YAC members and MICA CSD students create a mask based on a word (e.g., happy, angry) using what they have learned about visual communication of abstract ideas  50 minutes: Partner work   Identify desired medium for presenting journey map   Iterate on the first draft of information
Workshop 4: Finalizing the Journey Map
Workshop objective  Finish journey map	Schedule/activities  5 minutes: Overview of workshop  15 minutes: Icebreaker game  20 minutes: Dinner  80 minutes (or as needed): Partner work to complete the journey map

After the first workshop, in which YAC members learned about journey mapping and discussed data collection during their testing experience, the YAC members were given two weeks to independently complete their testing visit. YAC members were not instructed where to go, and were not provided information on STI testing clinics. MICA CSD students and the YAC members brainstormed reflection questions for consideration at each step of the testing visit (i.e., planning to get tested, traveling to get tested, registering at the clinic) as well as additional reflection questions to consider upon finishing their testing visit (Table 2). Three different options for recording their experience were also brainstormed including: writing in a notebooks with the reflection questions written inside, separated by testing phases; writing in the Notes section of their phone; or texting experience notes to their practice-based studio partner as they were happening, in order to consider the timestamp as an additional data input. YAC members were encouraged to use one, or a mix, of the three data collection methods. All YAC members and MICA CSD students provided written consent for project activities and received $50 during each session. Examples of the STI testing maps are available in Figures 1 and 2.

Table 2.

Reflection Questions Brainstormed by the MICA CSD students and YAC Members to Facilitate YAC Members Data Collection during and after their STI Testing Visit

Reflection questions for each step in the testing process

What did you do? What did staff members do (and/or say)? What was it like? How did it feel? How long did it take?

Reflection questions for after the visit

What was the best part of your testing process? Why? What was the worst part of your testing process? Why? Describe something that could have gone better during the testing process. What would you change? How would you change it? Any other reflections important to you that have not already been captured?

Figure 1.

MICA map example

Figure 2.

YAC map example

Participant Interviews

At the end of the journey map making process, the five YAC members and five MICA CSD students completed semi-structured in-depth interviews. YAC members and MICA CSD students were interviewed by a researcher trained in qualitative methods using an interview guide containing a series of open-ended questions related to key domains such as: finding a clinic for testing, the testing process at the clinic, feelings of the experience after testing, the journey map making process, and uses of the journey maps. Each YAC member and MICA CSD student had their journey map with them to facilitate their responses. Interviews were audio-recorded with participant consent and lasted approximately 1 hour.

Data analysis of the text was conducted using an iterative, thematic constant comparison process. The lead qualitative researcher independently read through three transcripts to develop the initial coding framework via open coding. Multiple iterations of the codebook were created through coding of additional transcripts and subsequent reflection and discussion by two qualitative coders (one YAC partner and one academic partner). The codes were then applied systematically to the interview transcripts in Atlas.ti software by the academic partner. Code output was synthesized and salient themes were extracted and developed. Thematic codes were compared within a single interview and between interviews, and variability was considered within themes by participant category (YAC member/MICA CSD student) and previous testing experience.^12,13

RESULTS

Uncertainty throughout the testing process serves as sources of stress and discomfort

Participants experienced stress and discomfort throughout the testing process, with three main sources of stress identified: 1) finding a clinic, 2) completing registration forms, and 3) general lack of clarity during the clinical experience. Both YAC members and MICA CSD students described finding a clinic to be a difficult and time-consuming endeavor. Most looked for information about testing online, using search terms such as “STD testing in Baltimore,” “STI testing in Baltimore,” and “health clinics in Baltimore.” Finding straightforward information was not easy for most participants and many described having to wade through information about at-home testing kits before finding clinic information. Once finding clinics, participants reported difficulty finding specific information such as information related to cost and hours:

But yeah, it was really confusing. There were not a lot of easy answers to be found as far as where you’d go and how much it would cost, not even when you should go and things like that. (MICA CSD student, first time tester)

Among the YAC members, who were under age 18, there was often confusion regarding the ability to be seen at a clinic without parental consent, despite Maryland law allowing for this:

I basically sat in my room just looking on Google, calling people, places to see if they really like do STI testing because some places only do it if you’re like 18 or older and stuff like that...And then I had to find a place that was free...and then make an appointment and stuff. So it took me a little while to actually like set it up and stuff. (YAC member, first time tester)

Several of the YAC members called clinics to verify information and ask questions: “[The information online] was kind of accurate, but I just wanted to be sure before I actually went and just took that time out and went there.”

Once at a clinic, a second important difficulty for YAC members, specifically, emerged. The YAC members expressed concern regarding filling out the registration forms to be tested, using words such as “stressed” and “nervous” to describe their feelings while completing the forms. For many of the youth, this was the first time completing medical registration forms without the help of a parent, and the YAC members did not know much of the information asked (such as family medical history and date of last menstrual cycle):

YAC member: It was pretty complicated because I don’t fill out those forms. When I go to the doctors or dentist, my mom normally does that. So, for the first time, it was like ‘I don’t know,’... I tried to put as close as best as possible what I knew...and if I didn’t really know, I didn’t fill it out depending on how important it was.

Interviewer: How would you describe the way you were feeling when you first saw the forms?

YAC member: Stressed. Stressed. Stressed and I was like, ‘I don’t know if I’m filling this out right.’ (YAC member, first time tester)

YAC members also noted uncertainty regarding the need to identify a contact in case of emergency: “I didn’t want them to send me anything to my house or call home, so I just put my best friend’s information.”

Finally, YAC members and MICA CSD students described a general lack of clarity with the testing process, which created stress while testing. This lack of clarity was related to what was being done, how it would be done, and why it was being done:

So then I sat in this chair and this is the part where I was like really uncomfortable...I held my arm out and like she just like put the needle in my vein...And like the whole time she was not talking. I didn’t know what she was doing to me, you know, and she pricked my finger, but she pricked it with something that...can cut a little bit deeper...Like she was just taking all my blood and giving me no information. (YAC member, first time tester)

This lack of clarity was expressed even among participants who had previously tested for STIs:

And then they asked me a series of questions - the risk assessment test. And then after that they told me to wait by the tree [in the waiting room]. I was kind of confused about that. I just waited by the tree for a while. [Then] they got like my blood test. And then after that they told me to wait again by the tree. (MICA CSD student, previously tested)

Friendly interactions with providers and staff improve the testing experience

YAC members and MICA CSD students commented on their interactions with various people during the testing process - security guards, registration staff, nurses, phlebotomists, and doctors. For several participants, their first interaction with a person at their clinic was what they discussed before anything else when describing their journey once at the clinic. These interactions were typically described as nice or friendly, and helped make the participant feel more comfortable and confident. A MICA CSD student noted this during an interaction with a security officer helping clients:

There was a guy down in the lobby directing people and he was just super friendly and really nice and helpful. So I remember thinking that that was a really great moment in the journey…this guy was just in the lobby like, “Where are you headed? Where do you need to go?” And I told him and he was like, “Great, right this way,” and he was just really nice and friendly. So that was a cool moment. (First time tester)

Similarly, a YAC member described a positive interaction with the clinician:

You get tested then you go and you talk to a second lady, a second doctor, about different birth controls and if I’m comfortable talking about why I decided to get tested and stuff like that. She’s really a nice person...It was really nice talking to her...She didn’t have to do much but talk to me or whatever, and she just made it like she really cared about me. (YAC member, first time tester)

Conversely, although no participant experienced an interaction that was hostile, those that were less engaging and friendly, or interactions with clinicians that immediately touched on sexual behaviors without any initial small talk, produced a sense of discomfort:

YAC member: [The doctor] wasn’t like energized or like really mean. It was just like she was really bland and stuff, like kind of straightforward, to the point.

Interviewer: And how did that style feel to you?

YAC member: A little uncomfortable...Like her personality and her energy, the vibes that was coming off of her wasn’t really good...Just coming in and saying, “Hello,” like a nice little -- somewhat seem happy or something...instead of “Yeah, what are you here for” and just trying to get you in and out.

Features of the clinical space impact the overall experience

All participants, without being probed, identified features of the clinic space as important influencers of their testing experience. These included the organization of the clinic, the color of the clinic walls and furniture, the lighting, and the cleanliness of the clinic, including the smell, for example. Determining on the features, the clinical space could positively or negatively impact the testing experience; however, the testing experience was influenced more significantly when the clinical features were not pleasant:

The clinic looked really closed because the building is all old and the windows are like dirty and stuff. So, I was like I don’t know if it’s open because it looked all rusty and closed. So, that’s why I was like scared. (YAC member, first time tester)

---

The room kind of made me uncomfortable because there was no light. They didn’t turn the light on for some reason. And there was a table that looked like it was old and rusty. I don’t know...Like the table where they did [the blood draw] just looked kind of unsanitary. So that part made me really uncomfortable. (MICA CSD student, previously tested)

Although participants overwhelmingly focused on aspects of the clinical space that produced negative feelings of fear or discomfort, positive observations were noted. One YAC member, for example, said: “It was cool…It smelled like roses and stuff and they had TV – had a TV.”

Discussion

This project provided a unique opportunity for adolescents and young adults to provide insight into their STI testing experience and inform future intervention development through the visualization of their experience via auto-ethnographic journey mapping. Through these maps and the subsequent in-depth interviews, AYA participants highlighted key elements of the testing process that affected their experience: difficulty accessing information about testing sites, uncertainty in completing complex registration forms, concern about the physical features of the clinic space, and importance of friendly interactions with staff and providers. Importantly, participants expressed an overall uncertainty in the testing process. These findings guided future partner activities and ultimately informed interventions aiming to improve STI testing among AYA implemented in BCHD’s STI clinics.¹⁴ 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. Additionally, registration forms were redesigned to incorporate plain language and be more welcoming and clear.

Our findings demonstrate a continued need to improve access for AYA to testing information and resources, especially online. AYA have identified the internet as a critical source of information for sexual health service information^15,16 and in our study, all participants searched the internet for STI testing location information prior to testing. However, previous research has found that while young internet searchers have an easy time finding general answers to sexual health questions, finding specific local resources for STI testing remains difficult.¹⁷ 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.^18–20 It is imperative, therefore, that STI testing campaigns and clinics offering STI testing to AYA address this gap in information dissemination online.

Physical clinic characteristics (e.g., perceived cleanliness, colors of the walls and décor) as well as social clinical characteristics (e.g., interactions with staff) shape the quality of healthcare experiences of AYA.^14,21–23 Cleanliness of the clinic emerged as an important issue among participants in this study, influencing the perception of the overall testing experience. Although not often discussed with respect to youth-friendly healthcare services, cleanliness of the clinic space has emerged in other research as important to AYA.²⁴ Additionally, participants prioritized social aspects of the clinic environment, and desired a welcoming and supportive clinic space. This is consistent with other research demonstrating that AYA want health care providers to be respectful, supportive, honest, trustworthy, and friendly.^18,22,24,25 Clinics may improve AYA client experience by training clinic staff and healthcare providers on the specific needs of young people, including their developmental needs and unique social and structural challenges.

Although STIs are a significant health threat to AYA, STI testing remains suboptimal.^7–9 Research with AYA as partners may help improve STI testing interventions among this population, as evidence suggests that policies and programs targeting AYA may be more acceptable and impactful when involving AYA’s input during the entire development process.^26–29 This study was embedded within a larger partnership effort, and included AYA as partners throughout the process. In this study, AYA were provided an opportunity to express their STI testing experience through their own voice via artistic expression and to inform future partner activities and intervention development. However, limitations to our efforts do exist, including the small number of YAC members and MICA CSD students participating in the auto-ethnographic journey mapping project. All participants accessed STI testing services through school-based clinics, community-based clinics, or public health department clinics, and thus the findings do not reflect the experiences of youth receiving testing at private physician clinics. Future work would benefit from replicating this activity with more youth utilizing a wider range of clinic types.

LESSONS LEARNED and CONCLUSIONS

The authors hope that this paper may provide an example for others and encourage diverse partnerships and opportunities for working with AYA. Table 3 presents the lessons learned while engaging AYA in auto-ethnographic journey mapping. The diversity in the project partnership facilitated unique opportunities for capacity building among AYA, including opportunities to foster communication skills, learn about a range of media platforms and software programs, and explore artistic and creative ways to share information. While the partners utilized a range of strategies for promoting a youth-friendly environment, some proved more important than others, including structuring plans to focus on short-term activities and goals and incorporating hands-on, interactive work into meetings. This project also demonstrated that youth communication can be facilitated through visual expression, as the journey maps aided the AYA in sharing about their testing experience in greater detail and with more confidence.

Table 3.

Lesson Learned Regarding Adolescent and Young Adult (AYA) Engagement in CBPR Partnerships from the STI Journey Mapping Project

Lesson Learned	Description and Suggestions for Future Projects
Diversity in partnerships provide opportunities for innovative research and action	This project included AYA, public health department officials, academic researchers, and social design experts. To address complex health issues, partnerships that blend diverse perspectives and expertise may present a wide-range of opportunities, including novel research methods, to understand and respond to a health issue.
Diversity in partnerships provide unique opportunities for capacity building among partners	Through the diverse partnership, the AYA partners were provided opportunities to foster communication skills, learn about a range of media platforms and software programs, and explore artistic and creative ways to share information.
To encourage youth engagement, the research/work environment should be youth-friendly	A number of efforts were made to make the research and work environment more youth-friendly, with some strategies emerging as more critical than others. These included, for example, structuring planning to promote short-term activities and goals; maintaining clear and consistent meeting structures; conducting meetings and work time in a way that incorporates activity, hands-on work, and peer interaction; and prioritizing group leadership/facilitation by young adults who can more easily relate to the AYA’s realities. While future partnerships engaging AY As should learn from youth-friendly best practices, partners should identify and prioritize the key elements that are most important to and effective for their AYA partners.
Group leaders/facilitators become important mentors and sources of information for AYA	The AYA participants relied on group leaders/facilitators beyond the scope of the partnership activity, often sharing personal issues and challenges on-going in their lives (including for example, lack of consistent access to food). Group leaders/facilitators should be trained to work with AYA, and should be knowledgeable about resources in the community that can provide additional support for young partners when needed.
AYA have limited experience critiquing systems	Although AYA may develop strong opinions about systems, they rarely are encouraged to view systems with a critical lens and provide constructive feedback. Future projects engaging AYA in providing such a critique of a system should provide opportunities for AYA to practice this skill and build their confidence prior to beginning the research project.
AYA communication can be facilitated through visual expression	Creative communication strategies, such as journey mapping, may help AYA feel more comfortable providing this critique, as well as other ideas, thoughts, and feelings. Referencing the journey maps during the in-depth interviews about their testing experience aided the AYA in recall, allowing for the identification of greater detail in their descriptions, and helped the AYA feel more relaxed and confident in their sharing. Partners can promote communication by and among AYA through incorporating a variety of artistic mediums to aid their expression.

Creative representations of experience are known to be beneficial for young people,¹¹ and through journey mapping AYA were able to communicate their STI testing experience and the moments in this process that were most important to them. Journey mapping and other artistic forms of recording and communicating information may provide important tools for identifying solutions to reduce barriers to STI testing for AYA.