Understand the underlying causes of concurrent preterm delivery while supporting mothers with a preterm baby?
The United States has a significant problem with infant mortality due to preterm delivery. Early preterm delivery accounts for 70% of infant deaths in the first year of life. Being born too early, anytime before 37 weeks in the womb, can also lead to short and long-term health risks in survivors and the majority of spontaneous preterm labor does not have a known cause.
The Stanford HABIT Lab, with support from the Mellon foundation, was interested in the social determinants of health of mothers outside the doctor’s office. By exploring the role of behavioral theory for supporting positive maternal child health behaviors in the home, we hoped to to reduce the rates of infant mortality among our participants. We decided to focus our current research project on two patient populations, mothers of preterm babies in the neonatal ICU in Santa Clara County, California and Allegheny County, Pennsylvania.
Form a Community. Mothers of preterm babies can connect with one another and share their stories, ask questions and connect.
Why? Mothers of preterm babies feel isolated in their experience and desire a way to connect with other people who share their experience.
Learn at the Library. An informational resource for mothers to access validated content to support with caring for their preterm baby.
Why? Caring for a preterm infant is complex and the informational resources are difficult to find so mothers need a way to access this kind of information in one place.
Dashboard and tracker tools. The app provides mothers with tools and trackers to check on her baby’s growth and development progress
Why? Mothers of preterm babies need a way to understand their child's particular progress, so that they do not compare them to term baby progress.
Our team conducted secondary research, semi-structured interviews and subject matter expert interviews. As the lead designer, I lead the user research portion of our research design. To address the design question, I wanted to understand how life outside the doctor's office might affect maternal health. I referenced academic research papers to understand the prevalent understandings of preterm delivery and reviewed psychology and behavioral science theories. I used these to construct an interview protocol for this patient population.
We spoke with doctors from the March of Dimes to discuss their clinical recommendations for managing concurrent preterm delivery. I was surprised to learn that medicine is still unclear about the causes of preterm delivery. They told us the best way they have found to decrease the concurrent rate is to increase the duration between pregnancies but there were no concrete strategies in place.
I interviewed mothers from California and Pennsylvania, with a history of preterm birth. They told me about the harrowing experiences of giving birth at the hospital, of feeling isolated at the Neonatal Intensive Care Unit and wishing that they had more specific and culturally relevant information about their baby’s special condition. These insights contributed to a broad understanding of the challenges and surprising joys of raising a preemie baby.
The participants were mothers with at-least one prior preterm delivery, living in the Bay Area and Pittsburgh, PA.
The goal was to understand what the experience was like from their perspective
From these interviews, we synthesized our results into many themes and insights. We focused our three insights on the key elements that described the mothers experience giving birth and raising a premature infant. Due to the HIPAA compliant nature of this project, I will not be able to directly quote any of the participants.
Mothers feel isolated when their preterm infants are in the Neonatal ICU.
Participants told us stories of visiting their babies in the NICU and feeling completely helpless. Even though doctors, nurses and social workers were there to help, they felt alone as parents.
Mothers of preterm infants each have very unique birth stories but don't have many people to share them with.
Participants explained that spontaneous preterm birth can be a very traumatic experience, which can be hard to talk about with anyone who has not experienced it.
Mothers wish to have access to more premature baby related health information.
Depending on how early the baby is born, they can have a variety of health issues. Participants told us that finding information about specific aged preemies is very difficult.
Jules Sherman, A design consultant and lecturer at the Stanford Design School, mentored me through the process of creating a composite persona from our user interviews named "Danika", and broke down the research insights into potential thoughts, wants and feelings.
I analyzed Danika’s profile and information to create a point of view statement so that we could specifically empathize with her experience.
Since I was leading the design arm of a research project working with a very vulnerable population, we collaborated to create a set of value sensitive design principles. I based these on what we had learned from our subject matter experts and formative research, and developed three main principles to guide the ideation process.
Our main priority was to create an intervention that was helpful to our participants and, based on their concerns, the most useful intervention would be receiving timely information in an intuitive way.
Being a HIPAA complient research project, we wanted to make sure that all the participant data was stored securely and that our designs were as non-invasive as possible.
Each mother and baby had unique needs and experiences, we wanted our intervention to be equally flexible and personal to each participant.
We committed to ideation involving our participants. We wanted to design an intervention that would incentivize users to provide their social determinants of health while providing them with the tools to navigate raising a preterm baby. With the participants input, we settled on three main aspects of the technological design intervention, delivered in the form of an app.
* A social component to connect mothers, to share their stories of giving birth prematurely.
* An educational component, where mothers could go for validated information about prematurity.
* Connections to local resources that could support the difficulties they would face.
I designed many different iterations of the features for user testing. This included detailed descriptions of interaction flows for the front and back-end developers to build out the app framework. I created interactive wireframes and user tested them during two different sessions with 8 participants.
From user testing, we learned that different participant mothers had different levels of comfort with mobile apps. Their lives were also very busy and made complicated by their baby's special needs. I made sure to note that as I made changes to the the application features.
Participants were looking for a social support network but they did not want to tell their birth stories to strangers. They preferred an open social space to talk about many different topics.
Refine: Change the focus from personal stories to a social network experience.
Participants were mainly familiar with social networking apps so we wanted to keep the experience within their comfort levels.
The participants hoped to find as much information as possible about caring for their premature baby. They also wanted ways to validate that the information was helpful to others in their community.
Refine: Create a content library with the ability to rate all content and view ratings.
Participants made it clear that they were looking for as much information as possible. They enjoyed consuming content on their mobile devices and found it to be a welcome activity during late nights staying up with their baby.
Participants were mainly concerned about the development of their babies. They wanted to know that their baby was progressing at a normal rate.
Refine: Provide tools, in addition to resources, to keep track of key progress indicators.
Participants shared that there were a lot of different apps that targeted new mothers but all the information they inputted would be stored in different locations. They really wanted all their tracked data to be in the same place as the informational resources.
The underlying purpose of this application was to collect survey data from the user participants about their social determinants of health. To accomplish this, I designed a survey experience that tested two different survey inputs and provided the user with a list of information that related to the survey content. I wanted the user to feel like they had gotten something positive from filling out the surveys.
From the co-design sessions, I was told that the moms wanted the application to look medically relevant but not scary. Some of them suggested that it be colorful and friendly. I designed visual system with bright but earthy colors and a kangaroo baby mascot that could be found throughout the app.
The Home Hub and Tracker Tools
Administering validated surveys to the app alongside baby development tracker tools and visualizations, to understand the social determinants of health over time for each of our users and to help them understand their baby's milestones.
The Community
Enables mothers to write about their experiences or share questions and concerns with a network of other mothers of premature babies.
The Library
Since there is no content resource specific to preterm baby care, we built partnerships with subject matter experts around the country and created a content library for mothers to access. The library feature houses all this content and allows users to rate each piece for the larger community.
I worked with the front and back-end developers to launch a pilot application with 30 mothers in California and Pennsylvania.
Being the lead designer and product manager for this project was really complex and exciting.
This project was done with a very small team. Releasing this app on the iOS and Google Play stores involved working with and managing front and back end engineers, managing the team remotely and communicating the needs of the medical research team to the development team. It was my first experience in a management role and I learned to advocate for different stakeholders in the process - user, researchers, developers and doctors. Making sure that they were all working together seamlessly through my organization and communication was really a growing experience.
Seeing the participants engage in the designed experience has been extremely rewarding.
Patients are usually asked a series of questions by providers to construct their medical history rather than telling their story organically. As a result, a lot of the patient’s personal experience gets lost in translation. The core of this project was to see what happens when patients are given autonomy over their own stories and a community to share them with. We have already seen absolutely heart-warming results from our initial participants, mothers with traumatic birth experiences who have never met, who are supporting each other on our platform.
