Efforts to involve young people as research partners build on well-established participatory research methods and create opportunities both for promoting youth development (YD) and for improving the scientific study of issues affecting young people's lives. This article focuses on the theory, practice, and implications of engaging young people as partners in research and evaluation. The first section provides a theoretical and empirical overview, describing the evolution of this new field of practice. The second section presents four examples of research projects in which we have participated that illustrate different approaches to youth engagement in research and evaluation. We highlight the ways in which youth participated in these projects, the issues encountered, and their implications for practice and future research. The final section presents recommendations for further efforts to involve youth in public health research and evaluation based on our experience in this underutilized strategy to inform public health practice.
Background
Participatory approaches such as "action research" and "empowerment evaluation" have gained increasing recognition and use among scholars and practitioners across a wide range of disciplines.1 Although they have evolved over the past several decades from various traditions of theory and practice, participatory approaches share common underlying themes. They encourage oppressed or marginalized groups to collectively study the issues and conditions that affect their health and well-being, while also encouraging respect for, and use of, multiple perspectives and methodologies. By promoting critical thinking and the exploration of the social circumstances related to research questions, participatory research goes beyond mere fact-gathering and report-writing and uses the knowledge gained to guide and energize collective change in communities, organizations, programs, and the research participants themselves.2,3 It relies on local knowledge and emphasizes the involvement of nonacademics who have expertise as individuals who live the research issue.4
Participatory research projects have addressed international development issues,5 organizational change,6 community development and advocacy needs,7,8 and healthcare and community health promotion.9-11 As a population, however, adolescents have been engaged by researchers almost exclusively as subjects, respondents, and informants, but not as resources or partners in the discovery of new knowledge or the development of policies and programs.12 Young people's knowledge and understanding have often been undervalued or dismissed as invalid.13 Researchers, policy makers, and program evaluators have begun to engage young people as research partners, to better understand youth and the contexts that affect their development.14 Youth participatory research projects can now be found in communities worldwide, evidence that youth involvement is now recognized as both valuable and valid.15-17
Youth participatory research has roots in several related fields including action research, community development, empowerment evaluation, and positive YD.4,18 It utilizes an ecological-developmental framework, in which human development is optimized when "maximum support and maximum challenge" offer opportunities to engage in increasingly complex activities and social interactions.19 The iterative process of exploring deeper and more nuanced questions about social issues inherent in this method offers a context for human development that is particularly appropriate to adolescents. As described in other articles in this supplement, YD has redefined how young people are being understood, viewed, and engaged, shifting the youth services paradigm from a deficit model in which youth are seen as problems, to a strength-based model that views young people as having assets to be nurtured within communities.20
Youth developmental assets acquired or enhanced through participatory research include (1) leadership skills as change agents; (2) critical thinking ability; (3) building a diverse social network and a broad base of knowledge; (4) valuable skills such as writing, analysis, presentation, and advocacy (K. Goto, P. Pelletier, G. Pelto, J.S. Tiffany, unpublished observation); (5) opportunities to take on new roles and responsibilities involving decision making13,17,21; (6) form new relationships with adults and members of the broader community18; (7) serve as role models to other youth and as experts possessing local knowledge about issues that affect young people.22 The entire enterprise engages young people in research on important social issues that enables them to exercise their political rights, prepares them for active participation in a democratic society, and empowers them to create social change.13,22-24 (See case studies by Schulman elsewhere in this supplement for additional examples.)
Participation by youth in the research process can improve the quality of research by generating more reliable data and improving data interpretation because it involves those closest to the issues under investigation in the formulation of research questions and the strategies to answer them. This enhances the likelihood that findings will be useful, owned, and acted upon by those involved in producing them.25 Youth are generally more informed about program services offered and often better able to obtain meaningful data that would otherwise be inaccessible to traditional, adult-driven methods. Furthermore, young people may more easily gain the trust of other youth than adults and may gather data that are more valid and reliable.26
Like many disenfranchised groups, young people have suffered from misinformed decisions and policies intended to help them, but designed without their input. The involvement of young people in the research process helps change this dynamic, providing them with the tools to develop and validate knowledge and to influence the development of programs and policies designed to affect their lives.15
Examples
Four projects are described below, illustrating the methods used to engage youth in participatory research and evaluation, with a focus on the ways in which young people were involved, rather than on the findings from the research.27-32Table 1 summarizes key elements of each of these four examples. It is useful for comparing the similarities and differences across the projects in terms of their objectives, methods, research team composition, approaches used to engage youth, and impacts.
Independent living study (youth/adult research partnership model)
The aim of the independent living study (ILS) was to better understand the scope and nature of youth homelessness in an upstate New York community. It provided community planning data to obtain federal funds to serve the county's homeless population. Traditional methods used to collect data on the adult homeless population, such as point-in-time counts at emergency shelters and soup kitchens, tend to underestimate youth homelessness, because homeless youth typically do not use these services and are relatively mobile, rendering them a "hidden population."33-35 Therefore, the ILS engaged a group of six formerly homeless youth to become core members of the project research team. These "youth researchers" were involved in all aspects of the project, from designing the tools and methodology, to recruiting subjects, collecting the data, interpreting the findings, and making presentations to key community stakeholders. They were recruited from a community program that served runaway and homeless youth and, at the time of the study, had "stable living conditions." An additional 10 interviewers were recruited from the program and were trained to (1) identify the sample and inclusion criteria; (2) obtain informed, confidential consent from study subjects; and (3) collect data. One hundred sixty-five structured 1-hour interviews were conducted over a 3-month period wherever homeless youth congregated (homes or apartments, on the street, on rooftops, in malls, in abandoned cars and buildings, but rarely in shelters). Prior to this study, many members of the community were not aware that any homeless youth were living in the county (for the full report, see http://www.actforyouth.net/documents/ILS%20Final%20Report.pdf).
Two university students worked closely with the youth researchers, monitoring and reviewing the completed surveys, developing an electronic database, and entering and cleaning data files. Preliminary data analyses were discussed and interpreted by the core youth researchers, who also helped develop and deliver presentations to community stakeholders including county legislators, funders, human service staff, university researchers, and statewide policy makers.
Rural HIV prevention study (participant-driven recruitment)
Participant-driven recruitment (PDR) is an adaptation of respondent-driven sampling, developed by Heckathorn and colleagues as a peer-based method to recruit members of hidden and marginalized populations to join HIV prevention studies.36-39 The goals of this study of HIV prevention and intergenerational communication among rural adolescents in upstate New York State were to (1) obtain baseline data regarding knowledge, attitudes, and behaviors related to HIV among rural youth; (2) adapt and implement the PDR method; (3) develop and implement a youth-created educational intervention; and (4) evaluate the impact of PDR and the educational intervention by measuring change at 18 months postbaseline.
A pilot group of nine young people was recruited through human service organizations to modify the research plan and questionnaire, and to develop the educational session. Engaging the pilot group in discussions regarding the design and implementation of the study enhanced their familiarity with, and commitment to, the research process. These discussions were taped, transcribed, and coded into themes by both youth and adults. Key quotes and themes were presented as posters so that the youth could see concrete evidence of their own insights: I was at that meeting, but I didn't realize we said anything this important. This is really important!! These youth then served as "seeds" to launch the PDR process in which any youth who completed a survey and attended an educational session had the opportunity to recruit other young people to participate. Youth received cash incentives both for completing the survey ($15) and for each new participant they recruited ($10).
Two members of the pilot group assumed paid research positions, in which they planned and facilitated survey and educational sessions, assisted with data interpretation, and coauthored a journal article about the project.31 They completed the Cornell University Human Subjects tutorial, assured compliance with informed consent procedures, and addressed the unique confidentiality concerns involved in working in small, rural communities. These research interns developed and tested their skills primarily by working in team settings, and collaborating with university students and faculty to administer surveys and conduct sessions. This meant that participatory learning within the team, as well as mentoring, played a key role in their development of research skills. Like the ILS project, this project offered young people opportunities to participate at various levels of intensity, from paid internships to intensive consultation as members of a pilot group, to peer recruitment and survey completion.
"What every adolescent has a right to know" (participatory action research)
From 2001 to 2003 UNICEF sponsored a global initiative in 14 countries, "What every adolescent has a right to know" (Right to Know), in which youth worked with adult supporters to adapt participatory action research techniques to investigate the impact of HIV/AIDS on young people's lives and communities. The initiative sought both to develop young people's capabilities and to inform national and global HIV/AIDS communication strategies. In Bosnia and Herzegovina, the participatory action research team in this effort consisted of five paid youth researchers who were nominated by a local partner organization and a head researcher who commuted between three towns. The youth researchers planned and facilitated activities during meetings, kept records (audio and written), wrote reports, and generally were responsible for ensuring that the work stayed focused on project objectives. Each town also developed a local research group (LIGa) involving 15 to 20 youth who were 13 to 19 years old. They were responsible for developing a strategy to recruit members in their own town, with the goal of targeting diverse and representative groups, including young people who (1) misused substances, (2) were war orphans, (3) were involved in sports and athletics, and (4) were from different religious groups and sexual orientations. LIGa meetings were scheduled to avoid conflict with school or other obligations, while enabling intensive hands-on work, including planning, survey development, and data entry and interpretation.
The head researcher and youth research team members met before and after each of the LIGa meetings. At the "premeeting," the team members reviewed their duties for the LIGa meetings and made any necessary amendments to the planned agenda. At the "postmeeting," they reviewed the LIGa meeting, drafted an agenda for the next meeting, and defined the roles team members would play in facilitating it. The head researcher was present at the majority of the meetings, mainly as an observer. In focus groups conducted for the overall project evaluation, the LIGa members viewed the youth research team as more active LIGa colleagues who coordinated the work, rather than hierarchically above the LIGa, while they recognized the head researcher's ability to facilitate communications, to provide technical support, and to bridge the gap between adults (she was in her 30s) and young people.
Program evaluation and organizational change (Youth and Adult Leadership for Program Excellence)
In addition to research in which youth themselves are both researchers and the targets of research, youth/adult research teams can also focus on organizational assessment aimed at enhancing program quality. Grounded in YD theory, this level of research has evolved out of the recognition by practitioners and researchers that young people accrue enormous developmental benefits from meaningful participation.40 When young people have opportunities to hold leadership positions, to be responsible, and to hold significant roles in governance, program planning, and implementation, multiple benefits are reaped by youth, organizations, and communities.41 Attempts by YD programs and other organizations to provide young people with opportunities and meaningful roles need to be assessed so that improvements can be made. The Youth and Adult Leaders for Program Excellence (YALPE)32,42 resource kit was developed by Camino and Zeldin to assist programs in program evaluation and organizational change (available at http://www.actforyouth.net/?yalpe), and is designed for use by teams of youth and adults working in partnership, sharing power, decision making, and responsibility throughout all phases of the process.
YALPE provides a simple, structured, field-tested resource kit for youth-serving organizations to conduct a rigorous self-assessment, as well as guidance on how to use the evaluation findings for program improvement and to gain support from various stakeholders through a documented evaluation process. The resource kit guides youth/adult teams through five phases of assessment and program improvement: (1) planning and preparing to conduct a program assessment; (2) collecting and compiling data; (3) analyzing and understanding the data; (4) sharing results with the group; and (5) action planning and finalizing the report. For organizations and programs that are interested in engaging youth as research partners, the YALPE provides a user-friendly, structured approach to create meaningful and developmentally rich opportunities for young people who do not demand intensive training or instruction.
Outcomes and impacts
Although the four examples described above engaged youth in innovative ways and for different reasons, several cross-cutting themes can be distilled with regard to the perceived benefits of this approach especially for the participating youth, but also for communities, and the research process.
Youth benefits
All of the projects were successful in creating positive developmental opportunities for young people, providing them with meaningful roles at increasingly advanced levels of complexity and developmental challenge. In essence, these research roles offered young people optimal conditions for development. In all of the projects, young people learned about the process of doing research and developed various skills including how to design and plan a project, develop instruments (eg, how to write survey questions), use different methodologies and procedures (eg, conduct interviews, lead focus groups), work with data, and interpret findings. Many of them gained public speaking skills and learned how to give presentations to diverse audiences, as well as advocate for issues of importance to them and their peers.
In several projects (eg, Rural HIV Prevention and Right to Know initiatives), youth served as peer educators. This deepened their understanding of the material they were learning, enabled them to develop teaching skills, and increased their involvement with and commitment to the project.
Another cross-cutting theme was that youth researchers had opportunities to interact with and build relationships with people of different ages, backgrounds, and social networks. This was especially evident in the UNICEF "Right to Know" project where workshops brought together youth from different countries and regions. Each project enabled young people to form partnerships with adults and work together toward a common goal. In the ILS project, the youth felt that their adult partners on the research team listened to them and valued their ideas and insights. In the YALPE project, the formation of the youth/adult team is the foundation of the evaluation process.
Young people were afforded opportunities for different levels of leadership. Those involved in the Right to Know project developed group facilitation, planning, and reflection skills. Some of the teams involved youth in addressing local impacts of Right to Know issues. Youth were involved not only in leading the implementation of different aspects of projects but also in using the results for action planning, and organizational or policy change. An integral feature of the YALPE is for youth to take on leadership for planning, implementation, analysis, and action. These tasks and steps of the research/planning process are clearly laid out in the tool kit, which enables young people to successfully and effectively take on the leadership role. This is an explicit purpose of the YALPE process, to use data for action planning and organizational change and improvement.
The experience of having adults listen to them and act upon their findings gave the youth an increased sense of agency and personal efficacy. In the ILS project, funding for services was increased, and the county legislators invited two of the youth researchers to join their subcommittee on transportation to influence bus schedules and routes.
Increased civic engagement is another observed outcome. PDR provides an alternate mode of civic interaction and participation. Youth who may have hesitated to attend and speak out at meetings accepted invitations from their peers to attend small, informal survey and discussion sessions, at which they learned about, and commented on, important social issues. Strong engagement and sense of ownership of the research by the "seeds" helped develop momentum in the recruiting process. At the same time, soliciting guidance from study participants on good times, locations, and methods of survey administration helped make participation more readily accessible.
Benefits to the research process
We also found that, in each of these examples, the quality of research itself benefited from active youth participation. Improved access to populations of interest was found by the ILS research team, which was able to gain access to hard-to-reach youth, who in all likelihood would not have been identified using traditional research methods, since less than 10 percent of the sample was interviewed at homeless shelters. The HIV prevention project reached segments of the rural youth population that would not have been reached by traditional methods.
In all four projects, youth provided critical input during the development of the instruments to ensure that the tools were "youth friendly," using understandable and accessible language. We also learned the value of having youth and adults jointly discuss and interpret research findings. In the ILS project, the youth researchers provided insightful comments that helped to better understand the survey results. They also validated the findings and helped assess whether the data portrayed an accurate picture of reality and where there were still gaps in our knowledge. It is not a common practice for researchers to share their findings with the subjects or communities studied, but this is a critical component of participatory research approaches. Those affected by the research are involved not only in collecting the data but also in the interpretation and ultimate utilization of the study findings.
The impact of the research was also heightened because community stakeholders were persuaded by having the direct input of youth. Quantitative data combined with real-life stories shared by the youth provided powerful arguments for action. In the ILS, policy makers and funders became motivated to address issues faced by homeless youth, and changed funding priorities and service delivery for this previously "invisible" youth population.
Implications for practice
Unlike traditional preparation of academic researchers, the youth involved in these examples trained only a few days (ILS), a week (YALPE), or months (Right to Know) to become oriented to research principles, learn data-collection and analysis skills, engage in field research on sensitive topics, and contribute to utilization discussions. Often this was accomplished in the context of extremely limited resources, and in some cases, significant logistical and administrative challenges. The time constraints imposed on the ILS project by the need to produce data quickly limited the time available to pilot the tool, resulting in several sections not yielding useable data. In addition to assuring adequate time to pilot instruments, we also encourage practitioners to provide ongoing training, with deliberate monitoring of research processes and staff to support both the youth and the data-collection effort.
Taking "youth voice" seriously in participatory research sometimes means balancing the conflicting priorities between the needs of the young people, and the needs of the research process. For example, in the ILS project, the youth researchers rejected having a university student accompany them on their interviews, fearing that the "presence of an outsider" would limit their access to certain individuals. However, this resulted in having less complete data. There also has to be a willingness and capacity of the institutions to build upon the findings and recommendations generated by the youth researchers.
Our experiences with the youth involvement component of the Right to Know initiative showed that youth engagement in participatory research requires careful and realistic planning, adequate time for learning and practicing skills, opportunities to critique and revise research strategies, involvement in interpreting findings, and opportunities to translate those findings into policies and actions. Youth participatory action researchers require "maximum support" (resources, institutional support, choice in relation to level of participation, realistic potential to influence future policies and programs, and respect) as well as "maximum challenge." Furthermore, large-scale institutions that foster youth participation in research and evaluation need to direct attention toward building upon the unique opportunity that they have created for youth researchers from different settings to meet, share ideas and findings, and develop networks of mutual support and challenge that will continue to bear fruit long after the research initiative has ended.
Conclusions
The four projects described demonstrate that youth involvement in participatory research and evaluation provides positive developmental opportunities for youth and creates a context for intergenerational partnerships. At the same time, participatory projects can generate useful research data, contribute to program and organizational improvement, and energize community mobilization around important social issues. However, efforts to engage youth in research will work best if care is taken to address the following key considerations:
1. All researchers need time to learn, practice, and improve their craft. Participatory research, which often unfolds in an iterative, cyclical manner, is ideal for this kind of learning and particularly well suited to engaging adolescents.
2. The timeframe needs to be realistic-long enough for the development, testing, and revision of new skills, but not so long that young people are unable to see it through to completion because of their own developmental changes.
3. The work of youth researchers needs to be supported with appropriate human, financial, and logistical resources.
4. Young people need to be engaged in and informed about the rights and responsibilities involved in "human subjects" research. In three of the four examples described, this did not take place; in the fourth, young people not only completed human subjects training but also contributed substantially to making sure that confidentiality concerns were addressed in an effective, context-specific manner.
5. Organizations that engage youth in participatory research and evaluation need to take youth voice seriously by listening to and acting upon youth recommendations. At the same time, youth recommendations should not be endorsed uncritically-the reflection and decision process involving youth-generated recommendations need to be no less rigorous.
6. Multiple modes of participation are important. A wide range of youth (not just youth who are "stars") should be engaged, and youth should have an opportunity to adapt their level of participation to their changing developmental needs. It is important to provide incentives or pathways to "ramping up" participation and assuming increasingly complex responsibilities, as well as ways for youth to reduce their involvement, while maintaining significant relationships with the project, as their developmental needs change.
Although the potential of youth participation in research to affect individual, organizational, and community development is great, to date, there has been little systematic study documenting these benefits. We have described four different means to engage youth in research roles that demonstrate multiple levels of youth participation, including consultation, partnership, and leadership. Each project faced obstacles and challenges, but all achieved success. Taken together, they speak to the promise of the approach for advancing knowledge, promoting positive YD, improving programs, and strengthening communities by engaging youth in participatory research and evaluation efforts.
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