Video Abstract
Introduction
“This project gave youth a voice to share opinions through the survey, but it also took involvement a step further and relied on youth like me to do the actual research.” —Elena (youth researcher)
Youth partnerships in pediatric health research afford multiple benefits.1 They can ground the research goals and outcomes in a way that centers youth needs and priorities, create opportunities for youth and emerging adults to be exposed to health research and develop skills, and broaden pathways for dissemination of findings. In this manuscript, we use the example of a recent study (“Adolescents Post-Dobbs”) to highlight the unique benefits of youth research partnerships and strategies for success. The Adolescents Post-Dobbs study aimed to elevate US youth perspectives on the changing reproductive health care policy landscape after the Supreme Court of the US Dobbs v. Jackson Women’s Health Organization decision in 2022. We share the perspectives of 2 youth researchers (Elena, a high school student; Thang, a college student), 3 research trainees (Dr Vear, Renee, Ellie), 3 research mentors (Drs Allison, Hoopes, and Chang), and a youth activism and civic engagement leader (Tamara Marzouk).
Initially catalyzed by a leaked draft majority opinion in the Dobbs Supreme Court case2 in May 2022, our Adolescents Post-Dobbs study team aimed to document the unique perspectives of youth before and after federal protections for abortion access were dissolved by the final ruling in June 2022.3 Our youth-partnered team collaborated with the MyVoice text-messaging survey research program, led by Dr Tammy Chang at University of Michigan.4 The MyVoice research program uses longitudinal mixed methods to elevate youth voice in health and health policy research. MyVoice survey participants are recruited through social media advertisements and community events, consented to be part of MyVoice, and receive compensation for participation. For the Adolescents Post-Dobbs study, our team drafted 3 surveys consisting of 5 open-ended questions each, refining the questions in collaboration with a team of youth and survey experts at MyVoice. MyVoice administered the Adolescents Post-Dobbs study text-message surveys to their national sample of more than 700 youth aged 14 to 24 years at 3 time points (ie, 4 weeks before, 2 weeks after, and 4 months after the Dobbs decision). Qualitative coding and thematic analyses were conducted to identify salient themes in each time point of data.
Our Adolescents Post-Dobbs study team included several youth and trainee members who were involved in any number of ways, including survey question development, data cleaning and management, data analyses, data interpretation, and dissemination of findings, such as through manuscript or blog writing, social media posts, and oral or poster presentations at conferences. Youth joined our team by directly learning about the project from one of the primary researchers (AJH, JM, BAA), by referral to the research team by the MyVoice leadership (TC), or through a collaborator from a youth-oriented community organization (TM). Our research team only met virtually to allow for inclusion of youth and research collaborators across the United States. The youth members (including KV, EP) who were involved in the preparatory phases of research met weekly for hour-long meetings with the rest of the research team. Those who were involved in data analysis and interpretation (including KV, EP, EE, RMO, TDD) met multiple times per week for 30 to 60 minutes over a 1-month period for each wave of data collection. Those involved in dissemination efforts met once or twice over the course of a few months, with more asynchronous contact. Authorship was offered to all youth and trainee study team members who expressed an interest in participating in manuscript writing for each wave. Authorship order was discussed at an initial meeting commensurate to each coauthor’s interest and ability to participate in the data synthesis and writing process. The researcher (AJH) serving as first author corresponded with and supported the youth authors throughout the manuscript preparation, submission, and revision process. The senior author (BAA) coordinated and supervised the youth participation throughout the Adolescents Post-Dobbs study timeframe.
The specific goals of the project were to understand how the removal of federal US abortion protections have affected adolescents and young adults’ sexual and reproductive health beliefs, conversations, and behaviors. Key findings of the project have been previously published.5–8 We found that youth (aged 14 to 24 years) over 3 time points were aware of and cared about the evolving legal landscape of abortion and are primarily seeking information digitally and from specific sources. Youth have thoughtful perspectives on topics like parental consent laws and resources their community might need for seeking abortion. Their voices offer unique insights into what youth will need from policies and programs post-Dobbs.
Youth Partnership Strategies in the Adolescents Post-Dobbs Study
Elena (Youth Researcher)
I got involved with the MyVoice [research program] through a program at my high school, where students are guided through the process of finding a mentor in any field of scientific research and then complete a summer internship.9 Soon after I reached out, I learned the details about what MyVoice does from Dr Chang, the program director. I was oriented with what specifically goes into the research, and I was put onto this team, which was working on responses to the Adolescents Post-Dobbs study survey.
When I first joined the project, several people took the time to carefully explain to me the methodology involved. I was given an overview of what the process looks from start to finish, and I was provided with several diagrams and written instructions, which included topic proposal, question development, response collection, coding, analysis, and dissemination. Once I began working, other researchers were always there to answer any questions I had about the process, and I never felt confused.
My favorite part of this project was the analysis and discussion of our results, where we really were able to reveal the takeaways of the study. Then, once we started working on the second-wave survey, I was able to give my own input on the questions. I feel like I was able to have a really large, positive impact here because I am in the age demographic that these questions are being sent to, so I could revise the questions from the perspective of a study participant. This second set of questions was the first round where I was involved for the entire process: question development, coding, analysis, and manuscript writing.
I was so lucky to be able to help coauthor one of the manuscripts that came out of this second round of questions, and I learned so much about scientific writing and the process of journal submission. Throughout this project, it was so amazing to be able to work with researchers, doctors, and students from all over the country while feeling like I had an equal role in the research process.
Dr Vear (Research Trainee)
Our goal in partnering with youth for the Adolescents Post-Dobbs study was to provide opportunities for them to gain exposure to and experience with every step of the research process, to include their invaluable insights into the responses from respondents their own age, and to empower them to continue asking questions, listening, learning, and advocating for issues important to their generation. Our team included youth researchers who contributed to question development and refinement, coded the response data, supported interpretation of findings, and contributed to manuscript preparation. As a medical and public health student, I had the opportunity to lead the analysis of the initial data, codesign the themes and codebook, teach others how to complete qualitative coding, and facilitate and lead discussion on our findings to inform our written manuscripts.
Elena (Youth Researcher)
Not only was I given a role on the Adolescents Post-Dobbs study team, but I was also granted the opportunity to join the broader MyVoice research [program] team. On weekly meetings, we shared updates with our individual projects and gave input on other people’s work. I loved being able to hear about all the fascinating research MyVoice was doing and even offer my own perspectives. It was really amazing to work with the team on a project like this because I knew it was giving a voice to youth, a group underrepresented in policymaking although heavily affected by the overturning of Roe v Wade.
I think involving youth in every part of advocacy and dissemination of research after publication is important and brings benefits. For example, the impacts of creating youth-friendly communication materials, leading social media campaigns, or engaging with decision-makers could all be expanded with the involvement of young people. This can bring authenticity to the dissemination process, especially when the research focuses on youth experiences and opinions. I had the opportunity to copresent at a conference, which was an incredible experience that gave me the chance to talk about why our research was important, especially involving youth in the research process.
Reflections and Recommendations for Researchers Partnering with Young People
Elena (Youth Researcher)
Including youth in health care research is amazing and so important to inspire the next generation of researchers. Including young people on projects gives the opportunity to learn so much and gain good experience. My leaders were also amazing because they understood my goals and helped me make sure I was doing the best thing for my learning and the team.
Dr Hoopes (Research Mentor)
Our youth and trainee researchers brought valuable insight and expertise to all aspects of the project. We asked them to share their perspectives on youth partnerships in research, summarized in Table 1. Our partners specifically highlighted the benefits of scientific rigor, youth representation, opportunities for personal and professional development, and youth-led dissemination of findings and research-informed advocacy. Youth health equity requires the inclusion of youth in all aspects of the research life course. This project reinforced my commitment as an adolescent health physician-scientist to meaningfully including youth on future projects, providing a powerful example of how this can be achieved. Our youth partners also brought great energy and enthusiasm to the work. For others considering youth partnerships, having strong project management, youth-friendly training on research processes, and a diversity of ways youth can be involved and benefit from the project to meet a broad range of skill levels and needs supported the success of this project.
Unique Benefits and Strategies for Success of Youth Research Partnerships From the Perspective of Youth and Trainee Research Team Members
| Unique Benefits . | Strategies for Success . |
|---|---|
| Scientific Rigor | |
| “Qualitative research is an inherently nuanced source of data to analyze and in my opinion it’s even more important to center youth voices when coding and analyzing it because understanding that subtext and nuance of words respondents use can get lost when we don’t include their peers in the analysis process.” —Ellie (research trainee) “Youth and young adults know the lingo of their peers and can identify the nuance of the qualitative data. This was particularly important with the rapid evolution of tech broadly and social media.” —Renee (research trainee) “Youth partnership allowed for better understanding and more accurate interpretation of the responses.” —Thang (youth researcher) | “Something that really helped me jump into working on the team was someone taking the time to explain the ins and outs of the program, what my responsibilities would be, and thoughtfully answer my questions. This helped me to feel more confident in the work I was doing. I worked with so many amazing mentors who made sure I was on the right track but still allowed me to learn by myself and gain valuable experience. I was given the tools for success, but also the space to discover things by myself.” —Elena (youth researcher) |
| Youth Representation | |
| “Utilizing a partnership-based model is essential for this line of work because adolescents are historically left out of reproductive health research, and in the research process itself.” —Ellie (research trainee) “Youth partnership is a great way to spend less resources on research while still providing meaningful incentives for youth to contribute.” —Thang (youth researcher) | “Include youth at every step of the way - they are experts in their own experience and can be the most helpful when they understand the whole context.” —Renee (research trainee) “It could be a nice idea to partner with a school or youth group to recruit youth partners.” —Thang (youth researcher) |
| Opportunities for Personal and Professional Development | |
| “My experience working on the MyVoice study was fruitful professionally, personally, and politically. Professionally, I’ve gotten the opportunity to be involved in research decision-making that trainees on my educational level are typically not a part of. As a student, I was helping develop the codebook and analysis plan, not simply handed a codebook and a dataset to execute. The trainees being multi-level also allowed me an opportunity to flex my mentor muscles with younger students, while also having appropriate scientific support and my own mentors to go to.” —Renee (research trainee) “Medical school often focuses on the crucial pathophysiology and management of disease, and I found working on the MyVoice research was able to fill in essential learning on research methods and dissemination…What I found super helpful were the multi sequential team training sessions to orient learners on the coding process. Team leaders made sure to include examples of what different codes mean, all organized succinctly in a spreadsheet. It was also helpful that the training sessions evolved to answer the coding questions as they came up and that there were multiple team members more than willing to meet individually to talk through methodology questions. While I have a rudimentary background in research methods from a class or two in college, being able to manipulate data with a trained researcher over zoom was such a great experience of experiential learning.” —Ellie (research trainee) “The MyVoice study has helped grow professionally by giving me lots of firsts and opportunities as a young person starting their career. My first peer-reviewed publication was on a MyVoice study!” —Renee (research trainee) | “Do actively encourage communication, as this makes it easier to develop skills and avoids issues.” —Thang (youth researcher) “When creating teams with varying levels of training, it is important to encourage members of the team with less research experience to take on tasks that are just out of their comfort zone to encourage skill building. This means cultivating a team environment where people can ask questions and learn by doing.” —Ellie (research trainee) “For a young person, working on a team with mainly older, more experienced people can be a little intimidating. I think it is so important to make sure youth on the team feel like they have the space to ask questions.” —Elena (youth researcher) |
| Youth-led Dissemination of Findings and Research-informed Advocacy | |
| “There is a disconnect between academic research and people who don’t have the access and training to understand research papers. Youth researchers have a unique opportunity to create a bridge between these groups–to show what the research says, why it matters, and maybe even how they can get involved–especially with their peers and family.” —Thang (youth researcher) | “I think youth should be empowered to present our research in spaces that teens are already in, such as school science fairs. We also should rely on youth team members to know what online spaces would be good venues for communicating our findings.” —Ellie (research trainee) |
| Unique Benefits . | Strategies for Success . |
|---|---|
| Scientific Rigor | |
| “Qualitative research is an inherently nuanced source of data to analyze and in my opinion it’s even more important to center youth voices when coding and analyzing it because understanding that subtext and nuance of words respondents use can get lost when we don’t include their peers in the analysis process.” —Ellie (research trainee) “Youth and young adults know the lingo of their peers and can identify the nuance of the qualitative data. This was particularly important with the rapid evolution of tech broadly and social media.” —Renee (research trainee) “Youth partnership allowed for better understanding and more accurate interpretation of the responses.” —Thang (youth researcher) | “Something that really helped me jump into working on the team was someone taking the time to explain the ins and outs of the program, what my responsibilities would be, and thoughtfully answer my questions. This helped me to feel more confident in the work I was doing. I worked with so many amazing mentors who made sure I was on the right track but still allowed me to learn by myself and gain valuable experience. I was given the tools for success, but also the space to discover things by myself.” —Elena (youth researcher) |
| Youth Representation | |
| “Utilizing a partnership-based model is essential for this line of work because adolescents are historically left out of reproductive health research, and in the research process itself.” —Ellie (research trainee) “Youth partnership is a great way to spend less resources on research while still providing meaningful incentives for youth to contribute.” —Thang (youth researcher) | “Include youth at every step of the way - they are experts in their own experience and can be the most helpful when they understand the whole context.” —Renee (research trainee) “It could be a nice idea to partner with a school or youth group to recruit youth partners.” —Thang (youth researcher) |
| Opportunities for Personal and Professional Development | |
| “My experience working on the MyVoice study was fruitful professionally, personally, and politically. Professionally, I’ve gotten the opportunity to be involved in research decision-making that trainees on my educational level are typically not a part of. As a student, I was helping develop the codebook and analysis plan, not simply handed a codebook and a dataset to execute. The trainees being multi-level also allowed me an opportunity to flex my mentor muscles with younger students, while also having appropriate scientific support and my own mentors to go to.” —Renee (research trainee) “Medical school often focuses on the crucial pathophysiology and management of disease, and I found working on the MyVoice research was able to fill in essential learning on research methods and dissemination…What I found super helpful were the multi sequential team training sessions to orient learners on the coding process. Team leaders made sure to include examples of what different codes mean, all organized succinctly in a spreadsheet. It was also helpful that the training sessions evolved to answer the coding questions as they came up and that there were multiple team members more than willing to meet individually to talk through methodology questions. While I have a rudimentary background in research methods from a class or two in college, being able to manipulate data with a trained researcher over zoom was such a great experience of experiential learning.” —Ellie (research trainee) “The MyVoice study has helped grow professionally by giving me lots of firsts and opportunities as a young person starting their career. My first peer-reviewed publication was on a MyVoice study!” —Renee (research trainee) | “Do actively encourage communication, as this makes it easier to develop skills and avoids issues.” —Thang (youth researcher) “When creating teams with varying levels of training, it is important to encourage members of the team with less research experience to take on tasks that are just out of their comfort zone to encourage skill building. This means cultivating a team environment where people can ask questions and learn by doing.” —Ellie (research trainee) “For a young person, working on a team with mainly older, more experienced people can be a little intimidating. I think it is so important to make sure youth on the team feel like they have the space to ask questions.” —Elena (youth researcher) |
| Youth-led Dissemination of Findings and Research-informed Advocacy | |
| “There is a disconnect between academic research and people who don’t have the access and training to understand research papers. Youth researchers have a unique opportunity to create a bridge between these groups–to show what the research says, why it matters, and maybe even how they can get involved–especially with their peers and family.” —Thang (youth researcher) | “I think youth should be empowered to present our research in spaces that teens are already in, such as school science fairs. We also should rely on youth team members to know what online spaces would be good venues for communicating our findings.” —Ellie (research trainee) |
Dr Allison (Research Mentor)
Partnering with youth on the Adolescents Post-Dobbs study allowed us to conceptualize a dissemination plan with maximum impact in elevating youth voices. We wanted to make sure youth were able to feel empowered by these findings to advocate for themselves, while also paying attention to getting these data into the hands of individuals or organizations that can change the landscape of youth reproductive health. Toward this goal, we invited the Adolescents Post-Dobbs youth study team members to partner with us to develop social media posts, blog posts, or academic manuscripts and presentations. Through connections with national youth-serving organizations, youth transformed our key findings into social media–ready graphics to make these data accessible to other young people. I partnered with one of our youth collaborators to write a blog post that would be read by policymakers and advocates.10 We shared our findings on multiple platforms: the MyVoice website,11 a national webinar,12 an international academic conference, and peer-reviewed journals,5–8 including receiving recognition as one of the most distinguished articles in adolescent health in 2023.13 The study also inspired an effort to build a road map for adolescent inclusion in abortion research, which is further amplifying the voices of the youth in our study.14
Dr Chang (Research Mentor)
In terms of how to do youth-partnered research, I typically focus on these main themes:
Start with a few youth—anyone who is interested—so you can learn what is the best way for youth to work with your team. Every youth and every team is different, and even if there are overarching guides (see Table 2 for additional resources), processes need to be tailored and adaptable to the needs and skills of the youth/team to be effective.
Show humility. Be open to the idea that youth may know more than you about an idea/phenomenon/topic, especially if the topic is about youth. Once you have this mindset, youth will respond by being more open to speaking up and contributing in meaningful ways in the research.
Keep processes and methods simple. At MyVoice, we say we do not do anything “scientifically fancy” because fancy processes preclude true partnership with youth, and it makes it difficult to explain our work to stakeholders, including youth. Of course, sometimes there are parts of research that require a PhD or master’s degree; those should be done by experts. Otherwise, the practice of explaining the steps of research in terms that high school students can understand often simplifies and improves your methods—or at least, the explanation of your methods. At MyVoice, we say that the work starts after the paper is published: We work hard to disseminate to everyday people, and keeping things simple makes it much easier to explain to communities, youth, and stakeholders.
Additional Resources for Youth Research Partnerships
| Resource . | URL . |
|---|---|
| MyVoice | https://hearmyvoicenow.org/ |
| The Science of Engaging Youth Lived Experience in Health Research, Practice, and Policy: A Workshop Hosted by the National Academies of Sciences, Engineering, and Medicine | https://www.nationalacademies.org/event/40727_10-2023_the-science-of-engaging-youth-lived-experience-in-health-research-practice-and-policy-a-workshop |
| Youth Engagement in Policy, Research, and Practice: Community Voice and Power Sharing Guidebook | https://www.urban.org/sites/default/files/publication/104936/youth-engagement-in-policy-research-and-practice_0.pdf |
| Engaging Youth in Participatory Research and Evaluation | https://www.health.ny.gov/community/youth/development/docs/jphmp_s079-s087.pdf |
| Resource . | URL . |
|---|---|
| MyVoice | https://hearmyvoicenow.org/ |
| The Science of Engaging Youth Lived Experience in Health Research, Practice, and Policy: A Workshop Hosted by the National Academies of Sciences, Engineering, and Medicine | https://www.nationalacademies.org/event/40727_10-2023_the-science-of-engaging-youth-lived-experience-in-health-research-practice-and-policy-a-workshop |
| Youth Engagement in Policy, Research, and Practice: Community Voice and Power Sharing Guidebook | https://www.urban.org/sites/default/files/publication/104936/youth-engagement-in-policy-research-and-practice_0.pdf |
| Engaging Youth in Participatory Research and Evaluation | https://www.health.ny.gov/community/youth/development/docs/jphmp_s079-s087.pdf |
Tamara Marzouk (Youth Activism and Civic Engagement Organization Partner)
Within the youth-adult partnership model, our goal is for young people to continuously move from being objects of a project (not involved or tokenized) toward being recipients (involved but only surface-level) and further toward being full partners initiating projects and making decisions with adults. Dr Allison and the team leading this study intentionally incorporated all of these tenets of an effective youth-adult partnership and provided youth with an opportunity to engage in data interpretation, sharing their perspectives and reactions to the findings. The youth were engaged throughout the process and, at the culmination, disseminated published findings to their peers. This was an incredibly valuable experience for young people engaged in reproductive health, rights, and justice work and allowed them to participate meaningfully in this research.
Meaningful and effective youth-adult partnerships take time. True youth-adult partnerships include the integration of young people’s lived experiences and expertise with adults’ experiences and expertise, an opportunity for both youth and adults to suggest and make decisions, and recognition and value placed on the contributions of both adults and young people. Research is an area that often treats youth as subjects and not active participants.
Elena (Youth Researcher)
Having the perspective of the people we are gathering responses from really helped me to relate to the people we survey. For example, when we were finalizing survey questions, people would ask me about the clarity of wording or how to make sure youth would be sending the information we are looking for based on the questions. I was glad to be able to provide the perspective of someone who falls into the age range that we survey.
This project really opened my eyes to the collaborative nature of research. I worked with so many different people all involved with so many different things. It really sparked my interest in research, and I plan to continue working with MyVoice and on other research projects like this when I attend college next year.
Drs Hoopes, Allison, and Chang conceptualized and designed the project, contributed qualitative content, supported interpretation of content, drafted the initial manuscript, and critically reviewed and revised the manuscript. Dr Maslowsky conceptualized and designed the project, supported interpretation of content, drafted the initial manuscript, and critically reviewed and revised the manuscript. Ms Padley, Dr Vear, Mr Dao, Ms Esbrook, Ms Odom, and Ms Marzouk contributed qualitative content for the project, supported interpretation of content, and critically reviewed and revised the manuscript. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
CONFLICT OF INTEREST DISCLOSURE: None of the authors have relevant conflicts of interest to disclose.
FUNDING: This project was generously supported by a grant from the Society of Family Planning Research Fund (grant number SFPRF16-IAA1). Dr Hoopes was supported by grant number K12HS026369 from the Agency for Healthcare Research and Quality. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Agency for Healthcare Research and Quality. Dr Maslowsky was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (grant number K01HD091416). Dr Allison was partially supported by the Society of Family Planning Research Fund (grant number SFPRF15-CM2), the Doris Duke Charitable Foundation (grant number 2020143), and the National Center for Advancing Translational Science (NCATS), National Institutes of Health (grant number 1K12TR004416-01). The MyVoice project was funded by the Michigan Institute for Clinical & Health Research and the University of Michigan Department of Family Medicine. The views and opinions expressed are those of the author, or authors, and do not necessarily represent the views and opinions of the funders. Funders had no part in the study design, data collection, analyses, interpretation of findings, or the decision to submit the manuscript for publication.
Acknowledgments
We are grateful for the additional youth researchers and advocates who contributed to this project: Ananya Tadikonda, Doruntina Fida, Madeline Thornton, Deborah Effon, Lauryn Ping, and Shayla Astudillo.
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