Responding to structures and systems that limit adolescent sexual healthcare

Within the polarized sexual and reproductive health landscape in the United States, many young people do not know they have specific rights regarding confidential sexual health care (laws vary from state to state) that is often provided for free or low cost. Additionally, many young people do not feel supported in their desire for medically accurate information about their bodies, contraceptives, or information on fostering positive sexual relationships. Rather than engaging youth in open, non-judgmental ways, clinicians characterize some youth as "at risk" for teen pregnancy or sexually transmitted infections, and subsequently care for and counsel them in narrow, paternalistic ways. Therefore, it is no surprise that on average it takes 14 to 17 months after they have become sexually active for a young person to engage a healthcare provider about their sexual health. Or, that young people account for half of the nearly 20 million new sexually transmitted infections in the U.S. each year.

Simultaneously, many providers young people see—including pediatricians and nurse practitioners—are not trained on sexual healthcare, especially to deliver quality, confidential care to adolescents. And yet, providers set the tone for these important conversations and decisions. They sometimes impart their own ideas about which contraceptive methods are appropriate for young people, and do not counsel on all methods, limiting information about and access to a range of methods that might fit a young person's needs.

The limitations of clinical care are further compounded for young people by virtue of simply being minors who need to be in school and do not have their own money or transportation. Young people of color living in under-resourced communities also face structural barriers to health and wellness, the realities of which are evident in myriad ways: differences around proximity to banks and grocery stores, school segregation, drop-out rates, rates of asthma and obesity, and rates of incarceration and victimization by crime.

In 2016, Ci3's Design Thinking Lab at the University of Chicago was created to use human-centered and participatory design approaches to create sexual healthcare services that align with the rights and aspirations of young people. We recognize the limitations of clinical care and inequitable social systems disproportionately affect young people, who do not move through the world with the same levels of autonomy as adults. As allied adults, it is our responsibility to address social systems and policies so that they support adolescent health care.

Through a unique design strategy and research approach that integrates three theoretical frameworks—the socio-ecological model, the reproductive justice framework, and positive youth development—with the core principles of Scandinavian participatory design, the Ci3 Design Thinking Lab has designed a sexual health service platform with and for young people, known as Hello Greenlight. Hello Greenlight provides:

• Youth-facing sexual healthcare awareness materials and experiences,

• Tools to improve sexual and reproductive healthcare, and

• Training and technical assistance for sexual healthcare providers and clinics.

How might we advance adolescent sexual health in America with and for youth?

As a new lab, we set out to design for youth-centered adolescent sexual healthcare. We launched a five-week workshop series with 31 adolescents, ages 14 to 20, from Chicago's South Side. The goal was to understand how the lab might advance sexual healthcare from the perspective of young people by understanding their experiences, hopes, and dreams, and by engaging them as designers.

The design research strategy driving the series uniquely combines three theoretical frameworks—the socio-ecological model, the reproductive justice framework and positive youth development—with the core principles of Scandinavian participatory design.

• The socio-ecological model interprets individual behaviors through the ecosystem from which they develop, at the intrapersonal, interpersonal, organizational, community, and policy levels—all of which can be barriers or facilitators to contraceptive care.

• The reproductive justice framework (RJ) recognizes that all individuals, especially those impacted by reproductive oppression, take part in transforming power inequities and creating long-term systemic change. RJ is achieved when all people have the social, political, and economic power and resources to make health decisions about their gender, bodies, sexuality, and families for themselves and their communities.

• Positive youth development recognizes the potential, capacity, and strengths of young people as they actively develop their confidence, knowledge, and agency to achieve future goals.

• Scandinavian principles of participatory design require that participants in design processes have a say about what is being made and call for mutual learning, such that participants benefit from participating in design processes.

When combined, these theoretical and philosophical stances kept the series—and continue to keep our design practice—youth-centered and focused on systemic issues, rather than individual ones.

Participatory design inspired by theoretical frameworks

As facilitators, we deliberately built the human-centered design competencies of participants through playful activities without being didactic. We purposely did not introduce the stages of the design process until later in the series, so participants could experience them on their own terms. During initial workshop activities, young people explored the ecosystem affecting their access to sexual health services. Next, they examined interpersonal relationships by creating a "perfect provider," and mapped different organizations, places, and people that influence them in everyday ways. They also interviewed their peers and public health experts to understand other perspectives on health and wellness.

To have participants practice observations and contextual inquiry, Ci3 partnered with a pediatric mobile health clinic. Workshop teams toured the clinic to understand physical aspects of the care environment and what it might signal to other young people. They created fictional patient scenarios, incorporating real sexual health concerns, then visited the mobile clinic with one team member serving as a standardized patient and remaining teammates observing the interaction. These simulated visits helped young people understand the current state of the patient experience from interpersonal and emotional standpoints and how care extends beyond the clinic into the community.

By the end of the series, teams had analyzed their data and generated a range of concepts to address their wishes and fears. Concepts clearly prioritized the perspectives of young people and also made evident a set of meta design principles for adolescent-centered tools, products, and services. These principles include:

1. Make sexual and reproductive healthcare-related rights known and actionable.

2. Clarify and help young people navigate pathways across the system of sexual healthcare.

3. Set expectations for what young people should expect for quality sexual healthcare before, during and after a visit.

4. Ensure that care delivery is inclusive, respectful, and supportive of patient choice.

5. Support young people's confidence and problem-solving efficacy for their sexual and reproductive health.

6. Provide young people with the space to have positive and constructive dialogues with other peers about sexual health, and to support each other in caring for their sexual health.

7. Equip adult allies with the tools and knowledge to support young people as they explore their sexual health.

Instantiations of change: The tangible contraceptive counseling tool

Inspired by seeing some of the actual contraceptive methods during simulated patient visits, one team left the session with many questions. In response, the lab shared its comprehensive stash of real, active contraceptive methods with the team. Seeing real methods in a relaxed environment inspired this team, as well as several others, to create tangible teaching tools and other related concepts.

Following the workshop, the Ci3 Design Thinking Lab continued to prototype the contraceptive counseling tool, keeping the vision of the tool as designed by young people intact, with the goal to ensure it would also work in the context of clinical care.

Generative, exploratory research

As a first step, the lab interviewed pediatric nurses, gynecologists, nurse midwives, and peer-health educators to understand how they currently counsel on contraceptives; which tools, if any, they use to counsel; and finally, to understand if the tangible tool prototype would help their contraceptive counseling be more impactful.

Many healthcare providers use printed handouts with pictures and text describing all of the methods—but these handouts fail to demonstrate how people actually use and experience methods. These handouts also typically rank methods based on effectiveness, which may not be the optimal approach for an individual based on their personal needs.

Based on these interviews, design criteria were expanded to include the following:

• The tool must present contraceptives without a clear hierarchy so young people do not feel pressured to adopt a particular method.

• Methods must be actual size so young people understand how it might fit into their bodies, busting many commonly held myths.

• Each method on the tool should feel as close to the real, active version. We created our own models because pharmaceutical samples can be difficult to obtain and come in one color.

• The tool must be small enough to fit in a white coat pocket; otherwise, providers will not take it to clinic.

With these considerations in mind, we began exploring different forms. The circular ring, with attached, flexible options proved to be the best solution. In other forms, the contraceptive options tangled together or limited a provider's ability to add and remove methods depending on their practice. With the limited time providers have, the tool had to be no-fuss and flexible to meet their needs.

Mock consultations and design activities

Version one of the tool was tested in a series of mock consultations arranged between midwives or advanced practice nurses and young people from Chicago. These consultations made clear that color needed more consideration. Although providers thought the renderings were sleek, upon handling the tool they realized it would get dirty quickly with repeated use. Young people thought that an all-white tool looked too "medical" and "creepy," so much so that they would not pick it up.

To understand what colors might be more appealing to young people and providers, members of each stakeholder group were provided a black-and-white printout of the rendering to color. This activity expanded the design criteria to include:

• The design must allow for color coding (hormone composition, etc.) that is easily understood by providers and fits the mental model of patient-centered counseling.

For version two of the tool, bright and friendly colors were applied to code the methods for providers, and to make the tool more inviting to young people. This version was also piloted in an obstetrics and gynecology clinic during adolescent visits, where providers indicated that the circular form allowed for a more patient-centered conversation by presenting the range of available options, and that the materiality and color coding supports communication about how methods work and the differences among them.

Adding evidence

In the following months, Ci3 will conduct two clinic-based research studies that aim to identify and recommend best practices for implementing the tangible contraceptive counseling tool in clinical contexts, as well as measure patient satisfaction and method uptake.

Satisfying design principles

This tool represents several design principles that emerged from the summer workshops with young people. It ensures that care delivery is inclusive, respectful, and supportive of patient choice, while also equipping adult allies with the tools and knowledge to support young people as they explore their sexual health.

Redefining the sexual healthcare experience for young people

The tangible contraceptive counseling tool is one instantiation of the Ci3 Design Thinking Lab's strategy to meet young people where they are by listening to them and the providers who care for them, and to actively engage both of these groups in a participatory design process. Hello Greenlight is currently researching and prototyping additional products and services to improve adolescent health that meet our design criteria and are driven by the theoretical frameworks that guide our approach; these include:

• Trainings for providers, so that they can manage their biases and provide better sexual health care for adolescents.

• Tools for young people to more easily have conversations with providers or other healthcare professionals about sexual health.

• Tools and experiences for parents to more readily support their young person in their sexual healthcare in positive, affirming ways.

•Providing technical assistance to organizations and clinics to operationalize these tools and trainings.