Youth-led participatory action research is a collaborative approach that engages youth as partners in research design, data collection, analysis, and dissemination. In contrast to traditional research, young research participants are positioned as co-researchers rather than subjects of research. The purpose of this case is to explore the principles of youth-led participatory action research approaches in the context of health and education research. We present the processes and outcomes from two youth-led projects that are grounded in the philosophies of shared leadership, joint decision-making, trust, and equitable collaboration. The first, the Youth Council for Suicide Prevention, is a youth-led project designed to address the ineffective suicide prevention programs that currently exclude the voices of youth experiences. The second project, Stuck in the Cracks, is a collaboration to develop community connectedness in a low-income neighborhood. Both projects are examples of youth-led participatory action research partnerships that include adolescents in all phases of the research process and rely on them to collect reliable data in populations that can be difficult to engage in research. We discuss the benefits and challenges of shared decision-making and leadership with youth.
By the end of this case, students should be able to
- Describe the philosophy and principles of youth-led participatory action research
- Identify the benefits and potential pitfalls of collaboration with young people
- Evaluate the usefulness of youth-led participatory research projects across fields and contexts
Participatory approaches to research seek to include participants as equitable partners in the full research process, from research design to data collection, interpretation, and dissemination. One such approach, youth-led participatory action research (PAR), is a methodology that empowers adolescents to be active collaborators in the research process, encourages capacity building, and supports youth in advocating against social injustices. Built on well-established PAR principles, youth-led PAR approaches have gained momentum based on their potential for promoting positive youth development and for increasing the quality of research about issues that directly affect young people. The purpose of this case is to explore the key principles of youth-led PAR approaches and to describe learning from two projects aimed at improving health and social conditions for adolescents. First, we describe the theoretical framework driving youth-led PAR approaches. Next, we highlight the diverse methods employed in youth-led PAR projects by sharing several applications in health and education settings. Finally, we explore our learning as co-researchers in youth-led PAR projects directed at health and social change in our community.
This case draws on two projects designed to partner with young people to better understand a research question specific to community settings in our area. Throughout this article, we describe learning from these projects to highlight the potential of research collaborations with children and adolescents. The Youth Council for Suicide Prevention (YCSP) of Cincinnati was established in early fall 2013 to respond to the prevalence of suicide attempts among local high school students. Over 50 teens have participated in the YCSP and led several key initiatives, including raising community awareness and identifying needs and priorities in suicide screening. The second project, Stuck in the Cracks, is a collaboration among adolescents, a social services organization, and academic researchers to promote community awareness and efficacy in a low-income neighborhood. Participants in this project have been responsible for designing and conducting their own research projects to understand the experiences of others in their neighborhood.
Youth-led PAR is an extension of PAR, an approach to research that values the knowledge and expertise of community members and includes these community members in investigations of local issues. Instead of conducting research on communities, PAR projects collaborate with communities to build capacity, share knowledge, and work toward social change (see Cammarota & Fine, 2010). For example, Cincinnati adolescents recognized the need to address and prevent teen suicide and established a YCSP. The high school students collaborated with academic researchers to investigate the community needs and priorities relative to suicide prevention.
Youth-led PAR differs from traditional research approaches in many important ways, including (1) valuing and building on strengths and resources, (2) facilitating partnership in all research phases, (3) maintaining an action-orientation and developing praxis, (4) encouraging co-learning and empowerment, (5) addressing issues of local concern, (6) valuing multiple perspectives and local knowledge, (7) attending to social inequalities with the intention of improving, and (8) disseminating knowledge to a wider, public audience beyond the academy (see Minkler & Wallerstein, 2010; Reason & Bradbury, 2008). Table 1 describes these principles in PAR approaches.
|Table 1. Principles of participatory action research.|
Focusing on action and praxis
Co-learning and empowerment
Issue of local concern
Multiple perspectives and local knowledge
Attending to social inequalities
Disseminating knowledge to a wider, public audience
Similarly, youth-led PAR is a process built on the assumption that youth voice in addition to youth action must take place in order to promote agency and to improve their life circumstances. Youth-led PAR teaches that social injustices are not natural and, through advocacy and social transformation, possible to change. Through experience with research processes and active questioning of social norms and community ailments, young participants develop skills in critical thinking, communication, discovery, exploration of social issues, and political and social engagement that empower them to become agents of change within their community and broader society.
Although commonly referred to as youth participatory action research (YPAR), we use youth-led PAR here to emphasize the active and equal role of children and adolescents in these projects. As will be presented throughout the case, adolescents in the YCSP and Stuck in the Cracks projects have played a role in developing research questions, designing a study, and collecting data. Other terms that refer to similar participatory research orientations, that may or may not include youth, are community-based participatory research, participatory research, transformative emancipatory frameworks, and community-engaged research.
Youth-led PAR approaches include the traditional phases of research (moving from study design and data collection to interpretation of the findings), but differ in implementation of each of these phases. For example, unlike traditional research, central to youth-led PAR is the formation and maintenance of the partnership. Effective partnership among young people, community members, other community stakeholders, and academic researchers is essential when implementing projects that utilize the knowledge and resources of all partners. Developing trust, establishing ground rules and expectations, and detailing partner responsibilities and roles help to ensure that research goals are being met while incorporating the voices of all members. Furthermore, a commitment to evaluating the partnership supports transparency and communication that can improve group functioning if disagreement arises.
After forming the partnership, youth-led PAR projects will frequently carry out a community assessment or other group process to identify priority issues within the community. For instance, youth in the YCSP project gathered data about the needs and priorities related to suicide prevention from over 200 Cincinnati high school students during a regional high school leadership conference. Next, the partnership designs and conducts the research using appropriate data collection techniques. In youth-led PAR, data collection occurs with youth as partners, rather than subjects. Youth may be trained to assist with research design, participant recruitment, data collection (e.g. surveys, photographs, interviews, focus groups), and data analysis. In collaboration with the youth partners, the partnership then interprets the findings and considers the relationship of the results to broader social issues such as preventing suicide in the example of the YCSP. Finally, research is disseminated to different audiences within the community rather than only academic outputs. In the Stuck in the Cracks project, teen girls decided to take their photos to the streets to engage community members in discussion about neighborhood concerns and priorities.
Although collaboration is important in each of the phases described above, there often are substantial shortcomings in the ability of partnerships to involve young partners in the full research process. In fact, most partnerships include youth in the problem identification and design/collection phases, but only 18% of partnerships involve youth in all five phases (see Jacquez, Vaughn, & Wagner, 2013).
Traditionally, adolescent knowledge has been dismissed and/or ignored by researchers, and when included by researchers, youth have been subjects rather than partners in research. In contrast, youth-led PAR positions young people as direct actors in each step of the research process (e.g. problem identification, research design, dissemination of results). Successful YPAR-oriented projects have allowed youth to drive decision-making processes and take a leadership role in collecting and analyzing data. Here, we describe research across disciplines that actively engages youth partners to build capacity in research, communication, and critical thinking skills; collect meaningful data; and ultimately create local change to fight against disparities.
Community-based participatory research approaches have gained momentum in the health fields for their potential to develop more meaningful and effective interventions, yet little of this research has engaged children or adolescents. One prominent example is the Youth-Led Action Research, Evaluation, and Planning (Youth REP) program. This training process engages youth in training, coaching, and capacity building with an ultimate goal of eliminating social and health disparities (Suleiman, Soleimanpour, & London, 2006). Their Adolescent Health Initiative uses participatory research methods to promote health equity, highlighting the power of youth to create community change. The Youth REP curriculum was implemented in school-based health centers to improve health care practices at the centers by incorporating youth voice. Youth research teams (YRTs) developed research questions through brainstorming processes and needs assessments, determining that the largest health concerns at their schools included depression, suicide, accessibility to contraceptives, sexual harassment, and the effects of relationships on health and wellbeing. The research teams used their findings to collect and analyze data, write recommendations for the school-based health centers, and make presentations to relevant stakeholders.
Youth-led PAR approaches have been used in educational settings to create space for the silenced voices of minority and immigrant youth. For example, Patricia Sánchez (2009), a bicultural-bilingual studies professor at University of Texas at San Antonio, engaged youth in Photovoice and critical dialogue, examining their shared yet contextualized experiences as immigrant youth who maintain contact with family in Mexico. This youth-led transformative, culturally informed research with transnational Latinas occurred in three phases: building relational knowledge (through Photovoice and dialogue about shared and disparate experiences and conversations about social contexts), collecting and analyzing data, and writing for social change. Through writing, publishing, and distributing a bilingual children’s book about transnational immigrant youth, the co-researchers co-constructed and shared the knowledge generated through their collaborative work.
When centered around shared leadership and decision-making, youth engagement in PAR has the potential to positively influence youth through development of practical skills, community awareness, action and community change, and potential health and educational outcomes (see Table 2). For instance, girls who were part of the Stuck in the Cracks project not only learned research skills in design, data collection, and interpretation but also worked with their community to identify priority areas in need of change (drug abuse, abandoned buildings, and lack of community pride). These benefits largely impact the youth partners who participate in the study, but extend to the quality of the research and the broader community as well. For youth partners, participation in the research process can promote social and emotional development, increase self-efficacy, enhance autonomy, provide opportunities to explore diverse perspectives, and build community awareness. Young people develop practical research and critical thinking skills, gain leadership and mentoring opportunities, and establish new relationships with peers, adults, and community members.
|Table 2 Benefits of Youth-Led Participatory Action Research (adapted from Suleiman, Soleimanpour, and London, 2006).|
Community and social awareness
|Factors that contribute to disparities, including ||Individual level: |
|Community level: |
The quality of the research also improves when community members are positioned as knowledgeable experts about particular issues. For example, participation by youth can help to generate more reliable data by relying on the expertise of those most directly connected to the experiences being explored. In both the YCSP and the Stuck in the Cracks projects, adolescent researchers were able to access their peers and other ‘insiders’ within their larger communities because they are peers and thus more likely to be trusted members of the community.
Finally, when youth are invested in the research, the results are more likely to be used to create positive changes within the community. Youth ownership over the project encourages continued activism and leadership to address the needs described within the research. Additionally, youth partnership in the interpretation and dissemination of the findings can help to build trust, enhance program visibility and interest, and support the social, political, educational, and health-related engagement of other youth within the community.
Successful youth-led PAR approaches require careful consideration of the unique needs and skills youth bring to projects. Developmental needs and capacities, access to resources, and limited experiences with power, decision-making, and autonomy may hinder the ability of youth to fully engage in YPAR. Without the proper training and scaffolding, young partners may feel overburdened and like they cannot meet the demands of the project. Additionally, limitations of the academic researcher (e.g. time, lack of extended engagement in the community, resources) and the partnership (e.g. project goals and design, funding, time) influence the success of youth-led PAR projects. Because youth-led PAR is an extensive, often slow-paced process, there is a substantial amount of time and resources required, factors over which youth typically exert very little control. Academic and recreational commitments, transportation, and family needs may limit the amount of time that children and adolescents can devote to participation. Ideally, youth researchers would be compensated for the time they spent dedicated to youth-led PAR initiatives, yet lack of funding may reduce or eliminate this possibility and therefore further complicate recruitment and retention in these projects.
The following two youth-led PAR projects are grounded in shared leadership and joint decision-making with youth partners. While both projects are ongoing, we present the two projects as examples of the diverse methods and strategies that can be used to fully engage high school students in meaningful collaboration and achieve the benefits of youth-led PAR described above. These projects were developed in partnership with adolescents and have been designed to both support youth development and use reliable research findings to create social change.
In the United States, suicide is the third leading cause of death among young people (Centers for Disease Control and Prevention (CDC), 2014). Many suicide prevention programs have been developed and implemented, with very few demonstrating statistically significant effectiveness, which is not surprising given that the causes of teen suicide have not been well understood (Hawton, Saunders, & O’Connor, 2012). The YCSP is divided into three initiative-specific subcommittees, one being the YRT. The YRT is made up of 12 youth members from various local high schools as well as academic personnel from a local university and medical center. Members of the YRT collaborated to successfully develop and implement a research project focused on suicide research and prevention. The primary goal of the research project was to better understand how to prevent suicide in Cincinnati teens.
Working from a youth-led PAR framework, it is expected that youth partners are involved in each step of the research process (e.g. problem identification, research design, dissemination of results). The YRT has developed a collaborative partnership, identified community concerns/needs, created research questions, and constructed and implemented a research plan. In the initial phases of the youth-led PAR project, time was spent getting to know one another, setting ground rules, and identifying group expectations. For example, members of the YRT felt very strongly that it was important to hold each other accountable to attend meetings and contribute work when needed. With input from academic partners, the group also discussed reasonable project goals given resource and time constraints.
In order to identify community concerns/needs, and thus determine the focus of their project, the YRT participated in training on qualitative research and then helped to identify themes from a group-level assessment conducted with the larger YCSP (N = 35 high school youth). The assessment inquired about youth’s perspectives on suicide prevention within the larger community, their needs in terms of resources/support for depression and suicide, and barriers to accessing support within various domains (e.g. family, school, larger community, etc.). The prominent themes were stigma around mental health issues and poor communication and misunderstandings among teens and caregivers. To further refine their research questions, the YRT learned to conduct a thorough literature review and participated in group discussions in order to identify gaps in the empirical literature. Based on the themes from the assessment and results of the literature review, the YRT decided to research how parental coping strategies influence the coping strategies of their children, particularly with regard to depression and/or suicidal behavior. They were also interested in exploring how parental support impacts this relationship.
With research questions in hand, the YRT then participated in an exploration of various study design options. Academic partners worked with the students to determine the best data collection method, instruments, and recruitment strategies. For example, some of the adolescents were interested in conducting interviews with students and their parents. After much deliberation, the YRT decided that administering surveys to high school students and their parents would be best suited to answer their research questions, especially given that the YRT members could administer surveys to large numbers of participants at their schools. Surveys were also preferable given the difficulties with coordinating interviews or focus groups with the YRT members’ already busy schedules. In choosing surveys, the YRTs were very active in the selection of the final questionnaires. During one meeting, they were trained in survey selection and were informed of the importance of choosing reliable and valid measures. Several youth members independently discovered and argued for the use of specific validated questionnaires measuring perceived stress, coping, and parental reciprocity.
The student co-researchers also gained experience in research ethics and the purpose of receiving institutional review board (IRB) approval prior to conducting research studies. While the academic co-researcher completed and submitted all IRB documentation, the adolescent partners help to compile portions of the final protocol document, including references for the literature review. While waiting for IRB approval, the youth co-researchers were trained in recruitment strategies, offered suggestions regarding how to approach high school students to participate in the study, and role-played participant recruitment with academic partners. The YRT has recently begun recruiting from their respective high schools. Three high schools granted the YRT permission to discuss the study with entire classrooms and handout recruitment flyers.
As the research group continues to collect data, regular YRT meetings are held in order to check-in with individual members and to maintain enthusiasm in the project. These meetings also provide opportunities to evaluate the status of participant recruitment and to brainstorm other ways that we can increase the number of surveys collected. For example, after the first few weeks of data collection in the high schools, we began to notice that response rates to the online survey were low. The youth co-researchers suggested that turning to social media in order to increase recruitment was a viable and necessary option.
Once data collection concludes, the YRT will be trained in data analysis and will have the opportunity to interpret the results of the data that they collected. This is an opportunity for them to visualize the culmination of their hard work throughout the research process and begin to plan the ‘action’ phase of their project. For example, many members are interested in developing and testing the impact of an educational and skills-based program that would be offered to teens and their parents. Additionally, several youth members of the YRT have expressed interested in disseminating their research findings. One youth member specifically asked, ‘Will we be able to publish this data?’ Questions like this demonstrate the enthusiasm and true potential of these youth—enthusiasm and potential that are often underestimated and overlooked by academic researchers.
This particular youth-led research initiative has incorporated many of the principles of YPAR, including collaborative partnerships, co-learning and empowerment, addressing an issue of local concern, and multiple perspectives. While the academic researcher brought basic research knowledge and had access to the necessary resources to carry out the project (i.e. requesting IRB approval, obtaining research materials, etc.), the student co-researchers supported the partnership with undeniable enthusiasm and a unique community perspective that would not have been available otherwise. Some of the youth co-researchers became so invested in the project that they requested to continue participating despite leaving for college. While data regarding the YRT’s satisfaction with the partnership have yet to be analyzed, many of the co-researchers have voiced positive affirmations about their participation in the project and have reported that they have a better understanding of (and new appreciation for) the research process in general. While the data collection is still underway, the youth researchers have already demonstrated their ability to design and carry out research that positively influences their community.
The Stuck in the Cracks project was a youth-led PAR collaboration using arts-based methods to explore issues important to adolescent girls living in a low-income neighborhood. This 1-year partnership included academic researchers, staff at a family services community organization, and seven adolescent girls who participate in social and emotional development groups through the community organization. The research team was approached by the family services organization to facilitate a project with a group of adolescents to support community awareness. After agreeing to form the partnership, the staff and academic researchers met to discuss the responsibilities and goals of the community–academic partnership, including shared decision-making, availability of time and resources, and building interest and support. In this initial meeting, we discussed the potential of Photovoice and other arts-based methods to create buy-in among the participants.
Photovoice, an arts-based, participatory method originally used to facilitate dialogue and social change related to everyday life, can be an effective way to engage children and adolescents in research. Typically, participants are trained in the method and given a camera to document a research question relevant to their lives. Group discussions follow where participants share their photographs, discuss emerging themes and shared meaning across photographs, and further describe the themes to be distributed to a public audience. For many, Photovoice is an engaging way to explore important social issues that may be otherwise difficult to discuss. The Stuck in the Cracks collaboration followed a similar process where the adolescent girls who agreed to participate were responsible for identifying an issue to investigate, participating in Photovoice training sessions, and collecting and analyzing the group’s photographs. After completing the Photovoice process, the co-researchers decided to take their photographs to the streets, eliciting feedback from other community members. Through a consensus-building process, the youth co-researchers elected to interview people of all ages, using their photographs to generate responses about neighborhood decline and change. In this phase, the students had the primary role in selecting the research method, practicing research skills (e.g. asking for consent, interviewing), selecting photographs for the photo-elicitation process, writing research questions to target community opinions, interviewing community residents, recording interviews, and analyzing and interpreting the data using a qualitative, participatory approach. In pairs, the youth partners conducted interviews with 23 community members. The interview participants were 9-56 years old and were approached while standing or walking in the streets, parks, or other public spaces in the neighborhood.
The Photovoice data collection and participatory analysis revealed several themes across photographs: the prevalence of drug abuse, prostitution, abandoned buildings in the neighborhood, lack of pride in the community, and community supports and resources. In the second phase of the Stuck in the Cracks project (so named because of a photograph of ruptured concrete and discussions of community apathy), the adolescent partners focused on three priority areas: (1) prevalence of drug abuse, (2) visibility of dilapidated and abandoned buildings, and (3) lack of pride in the community. The girls described their desire to create change in these three areas by continuing the partnership with a second phase of data collection. Their findings suggested that other community members also identified drug use, prostitution, abandoned property, and a lack of pride or ownership as significant problems in their neighborhood. Participants described the community apathy that influences people’s desire to change. For example, one interview participant stated, ‘When we see needles and trash everywhere, we think it’s normal’, while another remarked, ‘As long as it’s okay with us to live like that, we’ll live like that’.
Throughout the project, the students were eager to participate and share their perspectives on barriers in their community. Despite visible frustration with community apathy and decline, the teens were motivated to become positive influences. The partnership is cycling through the full research process again with a group of middle-school students—investigating issues that they identify as their priority and challenging adolescents to become agents of change in their community.
The results of this project demonstrated several themes that were important to the youth co-researchers and other participants, including the prevalence of drug use, the visibility of abandoned buildings, and resistance to change within the community. Through participation in all phases of the research, including partnership formation, problem identification, design and data collection, interpretation of findings, and dissemination, the youth in this project were able to explore social issues of personal interest. This project incorporates several principles of youth-led PAR projects, including equitable partnership, valuing multiple perspectives, and addressing an issue of local concern. Although there was initially a deliberate focus on community strengths and resources, group discussions always returned to needs within the community. The high schoolers directed the partnership to a new focus on needed community changes.
Participatory approaches, including youth-led PAR, operate in a cyclical, iterative process of continual learning, questioning, and change. Compared to many other approaches, youth-led PAR requires a significant amount of time to unfold. As such, projects need to set a realistic timeline that allows for relationship building, training in research methods, and adaptation in changing circumstances. Strict timelines and rushed schedules are unlikely to produce engaging and supportive partnerships. At the same time, timelines that are too lengthy may lead to burnout or attrition as partners become involved in other initiatives or lose momentum in ongoing projects. In the Stuck in the Cracks project, attendance became an issue when the youth wanted to also participate in sports and other after-school activities. We changed our meetings and adapted our schedule frequently based on the needs of the students, ensuring that we met their goals for the partnership while also being mindful of other commitments and opportunities within the community.
Furthermore, effective collaboration requires a commitment to regularly evaluate and modify the partnership. Depending on the situation, some projects may require logistical and structural support for youth (food, transportation, etc.), time to meet outside of school and work responsibilities, and financial compensation. Additionally, youth-led PAR requires a conscious, sustained effort to build the relationship between the young people, community, and academic partners. Forging the partnership by gaining entry to a community, bringing a diversity of stakeholders to the table (not just community members and adolescents who are already engaged), and establishing and maintaining trust with that partnership require considerable time and effort.
Finally, despite the best intentions, sharing power with young people can be difficult. Particularly for children and adolescents who traditionally have little autonomy over their own lives, education, and health, taking control and making decisions can be uncomfortable. Youth-led PAR partnerships require structural supports (e.g. activities, protocols) that enable young people to share their voice, communicate their knowledge and concerns, and assume responsibilities that have impacts on the group and the broader community.
Emerging from participatory and action research approaches, youth-led PAR is a process that seeks to create positive and meaningful change in the lives of young people. It is based on a theoretical framework that is deeply engaged in community development and capacity building and encourages youth to identify and explore meaningful topics and subsequently advocate for local change. Youth-led PAR projects value the expertise and knowledge of young people and actively partner with them to create changes that will have immediate impact on their lives. In its purest form, youth are involved in each step of the research, from problem identification and research design through the dissemination of results. Goals of youth-led PAR projects include empowering partners, facilitating critical reflection on important local and global issues, and developing the capacity of young people to advocate for social change. Youth-led PAR asserts that collaborative research partnerships can work to challenge inequities, overcome disparities, and ultimately change the broader community.
Despite the significant advantages of employing an empowering approach that values partnership and works to define practical solutions to local problems, there are also challenges that threaten the success of youth-led PAR projects. For example, participatory approaches have been criticized for not fully engaging youth throughout all phases of the research. In many projects described as ‘participatory’, young people are commonly only involved in the problem identification and research design and data collection phases of the study. In addition, youth are noticeably missing from the data analysis and dissemination phases of the research. The projects presented here are different in that they support adolescents in collaborating in a more equitable relationship throughout all phases of the research.
For example, the adolescent partners in the YCSP were responsible for decision-making that led to a needs assessment, development of research questions and research design, development of the survey, participant recruitment, and data collection. Importantly, high schoolers acted as gatekeepers, gaining access to participants within school settings and establishing trust with key stakeholders. In the Stuck in the Cracks project, the adolescents were responsible for problem identification, research design, data collection, and data analysis and have started planning public dissemination in a neighborhood event. In both projects, the academic researchers served more as facilitators than experts, training the students in research methods and supporting the progress of the research.
The YCSP and Stuck in the Cracks projects demonstrate the potential for shared leadership, joint decision-making, and trust in research approaches. Oriented in the participatory, collegial, and co-researcher end of partnership continuums, these two youth-led PAR projects have the dual purpose of supporting positive youth development and conducting high-quality research. Participation in youth-led PAR projects supports young people in developing practical skills in research and critical thinking, collaborating with peers and adults, and advocating for needed community change. Engagement in social issues helps youth partners to feel more connected to each other and their community while contributing to the development of improved programs, practices, and policy for health and education reform.
- Why are some youth hesitant or distrustful about participating in research? In what ways might youth-led PAR address youth concerns or change youth views about research?
- What are the advantages and disadvantages of using youth-led PAR compared to other more traditional research approaches?
- This case described several aspects of the research process that are important when using youth-led PAR. How do these aspects (e.g. data collection, interpretation of results, dissemination) differ in more conventional research methods?
- Youth-led PAR projects are often collaborations among youth, community organizations, community members, and academic researchers. Describe some of the benefits and challenges each of these partners may experience in a collaborative research project.