Participatory action research is a collaboration between researchers and stakeholders in the design and implementation of all phases of the research process (Turnbull, Friesen, & Ramirez, 1998). “At its best, the participatory action research experience empowers the participants in the research process, enhancing their sense that they are ‘author’-ities on their own lives and that their perspectives are respected and valued within and beyond their community” (Stevens & Folchman, 1998, p. 204).
When the Steering Committee of the 1998 International People First Conference, comprised of self-advocates with developmental disabilities, wanted to conduct a quality of life survey at the conference, participatory action research was the logical approach. The promise of this type of research is to answer the questions of the people who are affected by the research (Heller, Pederson, & Miller, 1996) and was congruent with the self-determination agenda of People First. The Steering Committee wanted information to help focus their self-advocacy efforts more effectively and to develop strategies to recruit new members.
Involving people with disabilities in the research process provides opportunities to identify research questions and goals that are important to them, earn new skills, express their views on a situation, and interpret the results of the research (Heller et al., 1996). Collaborating with people with developmental disabilities in the research process also gave us new perspectives. Reflecting on our experience, we offer the following suggestions for future participatory research projects.
1. Orienting and Teaching Stakeholders About the Research Process
The quality of a participatory approach will be increased if participants fully understand the purpose, process, and intended outcome of the project (Stevens & Folchman, 1998). It is critical that the researcher(s) spend time with participants to help them understand the intricacies of research protocol so that they can become active participants in the entire process.
A real challenge lies in involving people with cognitive disabilities in the data analysis and interpretation phase of research. Although time-consuming, the effort to include people with cognitive disabilities in the data-coding and analysis processes is necessary for a truly participatory approach. More difficult is explaining the meaning of statistical tests. Our attempts to include self-advocates in the interpretation failed largely due to difficulties they had extrapolating beyond their own experiences to understand the meaning of the data for a representative group. As a result, the People First members were disappointed in some of the results and conclusions we presented. For example, we found that education was related to quality of life. This finding had implications for targeting membership recruitment efforts toward individuals still enrolled in school programs and focusing self-advocacy on better educational programs. The suggestion was met with resistance. All of the chapter members were middle-age adults. They wanted to focus on their own issues and did not seem interested in expanding their efforts to discuss issues that did not personally impact them.
On the other hand, they were in agreement with suggestions related to findings on employment and housing issues. Unfortunately, it seemed that the expectation of the study was to discover whether the self-advocates' experiences were shared by others, not to determine whether there were different issues that required advocacy. Had we been more successful in including self-advocates in the data analysis portion of the research, the experience may have changed their reaction to the results and conclusions.
2. Clarify Roles
It is important to be specific about what is expected from each participant and the role they will play in the research process. The People First membership felt great ownership of the study. To enable more involvement and control in the project, the Steering Committee appointed a subcommittee of 5 self-advocates to develop the questionnaire.
The creation of the questionnaire was a smooth process, with little dissension among the members of the subcommittee. Discussions of which questions were necessary, appropriate, and useful were animated and interesting. The subcommittee members shared stories of their own experiences to illustrate why a question was necessary or why a question might upset a respondent. They evaluated the validity and necessity of each question in the context of their own lives and carefully considered how others might interpret the questions or if they would upset someone who had different life experiences from their own. Members were able to articulate the components of quality of life they thought were important for other persons with developmental disabilities. They were sensitive to the wording of questions to make them easily understood by all and to ensure “people first” language. The subcommittee made all final decisions on how to word questions, which questions to include in the survey, and the rating scale. Because this was their study, we had decided that our role as researchers was to identify conceptual issues, highlight problems, and state technical concerns about particular questions for discussion purposes only. Unfortunately, in our eagerness to give self-advocates control of the questionnaire, we created methodological problems that compromised the results.
We learned that role clarification at the beginning of the process, identifying areas of expertise, and establishing guidelines for the team process will mediate power and control issues.
3. Negotiate Time Commitments Up Front
All participants, researchers, and stakeholders need to understand that this process takes a great deal of time. Although stakeholders who were highly motivated initiated the study, the amount of time involved was underestimated by all involved. The original design was to have self-advocates actively involved in the questionnaire development, pilot study, and data-collection process. Unfortunately, self-advocate involvement fell far short of the goal.
The questionnaire development took over 4 months. Attendance at subcommittee meetings varied. Only 2 members were consistent in their attendance and played the largest role in developing the questionnaire. The questionnaire was pilot tested at another People First chapter, and none of the subcommittee members were able to attend due to unsolvable scheduling conflicts. Therefore, a researcher conducted the pilot.
As the conference drew near, it became apparent that the availability of self-advocates to conduct interviews and collect data at the conference was limited. They became more involved in other aspects of running the conference. Thus, people without disabilities conducted the majority of the interviews. Two self-advocates conducted a total of 18 interviews with a partner who did not have a disability.
To ensure there were sufficient interviewers to conduct the study, we recruited college students. A self-advocate was present at each of the training sessions to discuss issues on interviewing and interacting with people who have developmental disabilities. Although it was disappointing that more self-advocates were not involved in conducting the interviews, the experience was beneficial for most of the interviewers without disabilities. In retrospect, this turn of events provided a valuable learning experience for many students who had no previous experience interacting with people with developmental and other significant disabilities. One interviewer stated that it was the most enlightening, eye-opening experience he had ever had.
4. Start Small
This project spanned over a year, and the self-advocates' interests moved to other projects at the conclusion of the conference. If the project had a smaller scope and had been completed within a few months, perhaps the interest level and response to the results would have been stronger. Building capacity and expertise in participatory action research requires practice and experience. Success with small projects will reinforce participants and, hopefully, increase their interest and participation in future research activities.
The active involvement of self-advocates with developmental disabilities in this study contributed enormously to the richness and quality of the research, despite methodological problems. The development of the questionnaire provided the opportunity for people with disabilities to carefully consider many issues that affected their lives. The questionnaire discussions also offered a rich learning experience for us to listen and understand the essence of self-determination. Equally important was the process of collecting the data. Self-advocates were needed to help train student volunteers; thus, they assumed a valued and respected role as researchers. The experience also benefited many of the student volunteers who had never interacted with a person who had a developmental disability and who left the experience with a new awareness of people with disabilities. However, in order to make participatory action research an accepted standard within the field, it is necessary to recognize that it takes considerably more time and effort, as others have pointed out (Santeria, Singer, DiVenere, Ginsberg, & Powers, 1998; Stevens & Folchman, 1998; Turnbull et al., 1998). As Sample (1996) noted, “PAR [participatory action research] with individuals with disabilities is not only reasonable, but moral, ethical and necessary” (p. 331). Much more work needs to be done to refine the processes by which individuals with developmental disabilities are active participants in research processes that affect their lives.
The author thanks the members of Anchorage People First Chapter for their initiative in spearheading this research project, their continued involvement in the study, and their devotion to self-determination.