People without disabilities may assume that people with disabilities are not sexual and are not interested in having children. But actually, people with disabilities often have the same interests and desires as anyone else. We do research to understand more about sexual and reproductive health needs among people with disabilities. We are also working to develop tools to help support reproductive health.
Pregnancy Decisions App Project
Creating a pregnancy decisions app for people with developmental disabilities
The purpose of this study is to learn what information people with developmental disabilities need about pregnancy. We also want to know how we can help people make decisions about whether or not they want to get pregnant. At the end of the project, we will have a phone app that people can use to help make decisions about getting pregnant or not getting pregnant.
The project will last for five years and includes three main parts:
- Talking to people with developmental disabilities to learn how they make decisions about pregnancy.
- A survey to learn what the most important things are to include in a pregnancy decisions app.
- Creating the pregnancy decisions app and getting feedback on it.
OHSU and Portland State University's (PSU) Academic Autism Spectrum Partnership in Research and Education (AASPIRE) are partnering on this project. To learn more about this project, please click the link below.
We are currently recruiting research participants for the interview part of our project!
We are looking for people who:
- Have a developmental disability, such as intellectual disability or autism
- Are between 18-50 years old
- Have any possibility of getting pregnant (even if it is unlikely)
- Live in the United States
If you do an interview:
- A researcher will interview you in private
- The interview will be about an hour
- You will be paid $50
These interviews will help us understand what to put in the app.
If you are interested in doing an interview, please fill out an interest form.
Willi Horner-Johnson, Principal Investigator
Willi Horner-Johnson is an Associate Professor in the Institute on Development and Disability at Oregon Health & Science University (OHSU). She does research to learn about and improve the health of people with disabilities. She is leading the Pregnancy Decisions App project.
Christina Nicolaidis, Co-Investigator
Christina Nicolaidis is an internal medicine doctor at OHSU, and a professor at Portland State University (PSU). She uses participatory research to improve the health and healthcare of people who are often left out or overlooked. Participatory research means that people in the community are part of the research team. Christina co-directors the Academic Autism Spectrum Partnership in Research and Education (AASPIRE; www.aaspire.org). AASPIRE uses participatory research to work on things that are important to autistic adults. Christina is leading Community Partners meetings for the Pregnancy Decisions App project.
Dora Raymaker, Co-Investigator
Dora Raymaker is a Research Assistant Professor at PSU’s Regional Research Institute for Human Services, in the School of Social Work. Dora is an Autistic person. Dora co-directs AASPIRE. Dora leads participatory research projects about employment and ways to reduce discrimination for people with disabilities and mental health conditions. For the Pregnancy Decisions App project, Dora will do interviews and help with creating and testing our app.
Jeanne-Marie Guise, Co-Investigator
Jeanne-Marie Guise is an obstetrician, professor, and researcher at OHSU. She leads groups of researchers working to improve the health and safety of women and children. As a practicing women’s health clinician, she will make sure that the medical information in our app is accurate.
Karen Eden, Co-Investigator
Karen Eden is a professor in medical informatics at OHSU. She helps people understand research findings so they can make the health decisions that are best for them. She creates tools to help people think about decisions and be ready to talk to a doctor about their health questions. She will guide us in developing the Pregnancy Decisions App.
Katie McDonald, Co-Investigator
Katie McDonald is the Associate Dean for Research and a Professor of Public Health in the Falk College of Sport and Human Dynamics, and a Faculty Fellow at the Burton Blatt Institute at Syracuse University. Katie studies how to protect the rights and well-being of adults with intellectual disability when they are in research studies. She also does research collaboratively with people with disabilities. She will join us in Year 2 when we start working on our survey.
Kye Doran, Project Coordinator
Kye (they/them) recently graduated from the OHSU-PSU School of Public Health with a degree in Health Promotion. They are interested in participatory research that supports the health of groups not treated fairly by the medical system or society. Kye is working to keep our project on schedule and make sure we meet our goals.
Yuliana Paniagua, Student Research Assistant
Yuliana (Yuli) Hernandez Paniagua is in her junior year at PSU. She is majoring in health sciences and pre-clinical health sciences. Yuli is interested in women’s health and pregnancy outcomes. She is reading about other research that could help with the Pregnancy Decisions App project.
For the Pregnancy Decisions App Project, we are using a community based participatory research approach where university scientists and community members work together to do research. We call community members who work on the research team Community Partners.
Community Partner Lead
Alix R. Herer
Adriann S. Davis
Lisa L. Wasikowski
Melissa A. Wyman
Sequoia L. Holloway
This project is funded by The Eunice Kennedy Shriver National Institute of Child Health and Human Development.