Injury epidemiology- Participatory action research and quantitative approaches in small populations Lorann Stallones, PhD Professor and Director, Colorado Injury Control Research Center In many areas, studying the distribution of diseases is hampered by the fact that the study populations are small. The purpose of this lecture is to provide an introduction to some qualitative research tools which can be used in conjunction with the more traditionally used quantitative approaches described in a previous lecture to improve understanding of the epidemiology of injuries where the population size is small. Dr. Stallones is a Professor and the Director of the Colorado Injury Control Research Center, a Centers for Disease Control and Prevention, National Center for Injury Prevention and Control funded academic research center. Her interest in research issues among rural populations and under-served communities began with research conducted among farm families and a stint in the Peace Corps in Micronesia.

Learning objectives To understand issues in injury epidemiology when studying small populations To identify data to assess injury problems in small populations To understand the role of participatory action research in the design of prevention and control programs in injury Small communities present particular problems when studying even commonly occurring conditions including injuries. Most techniques for ongoing surveillance are based on substantial populations. Data available for communities with fewer than 10,000 individuals is difficult to obtain and rates computed are unstable. Yet, these communities tend to be more responsive if data used to justify programs are based on local observations. The purpose of this discussion is to provide some approaches which can be used in studies of small populations.

Performance objectives Identify local data for injury surveillance Understand the difficulties in describing injury patterns in small populations Define participatory action research Local sources of data are frequently neglected in studies of larger populations because data are collected in a systematic way and rates are stable over time. However, there are a variety of approaches which may be more useful where there are no hospitals, few clinicians and the local health department is understaffed, therefore has not had the time or money to compile local information.

Data sources Injuries which are severe or fatal are often reported in local news media (papers, radio, television) The most obvious source of information in a community is the people who live there. It is likely that in small areas, people know each other, they know who has been injured severely, and they can provide information about their friends and neighbors. If a local newspaper is available, these often provide significant details about injuries which may have occurred in the area. Other news media may be radio or television reports of local events, including severe and fatal injuries.

Data sources Community leaders are likely to have information about people in their area who have suffered injuries Interviews can be conducted with community leaders, either traditional leaders or simply individuals in the community who are knowledgeable about their community (elders, school teachers). Community leaders include not just professionals and political leaders, but in the area of injury, many individuals should be considered.

Participatory Action Research The key difference between participatory research and researcher directed work is the commitment to involvement of all groups to whom the results apply The advantage that derives from the involvement of the “study” population at the beginning and throughout the study is that results are more relevant for that group and results may be immediately used for program development by the local population. Many epidemiologic designs require long periods between data collection, analysis, dissemination and application of the results to the affected group. The epidemiologic studies which result in the most rapid application are those related to outbreak investigations, however as those studies have been applied to non-infectious diseases (for example, clusters of cancer cases), even they have not resulted in rapid dissemination of results and application. Further, the involvement of the participants in the formulation of the study question as well as the study design ensures that results will be of interest and may result in wider application of findings to the population.

Participatory Action Research Participants are involved in: 1. Setting the research agenda, including development of the questions to be addressed The primary use of Participatory Action Research is to motivate a group of participants to take the political or implementation steps necessary to make changes in their situation. The utility of the approach is injury prevention rests largely with the fact that frequently there are too few technical experts in a small community who have time and skills to be the only people involved in prevention programs. Therefore, using this approach may perpetuate the evolution of injury prevention programs in otherwise under-served areas.

Participatory Action Research Participants are involved in: 2. Defining how research will be conducted The involvement of community leaders and participants in selecting the research questions and approaches means they will have an investment in the continued success of the research and the action plans that result from the analysis of the study results.

Participatory Action Research Participants are involved in: 3. Creating the change needed by monitoring and evaluating results In provide monitoring and evaluation of programs, involvement of the community through training people provides an opportunity to ensure success and continual refinement of the prevention programs.

Participatory Action Research The researchers’ role in this type of work may be as the facilitator, but may also be as the expert to provide guidance when the participants request more input Theoretically, the role of the researcher in Participatory Action Research is to facilitate rather than direct the research effort. Practically speaking, often the researcher is needed as an instructor for the participants to ensure they develop necessary skills to continue the development of injury prevention programs into the future, after the researcher has left the community.

Participatory Action Research Advantages of this approach are: 1. Participants learn to conduct research The goal of this type of research approach is to train and to empower community residents in order that they can and will continue to foster programs in injury prevention as their community needs change, as resources change, and as injury patterns change.

Participatory Action Research Advantages of this approach are: 2. Research conducted better meets needs and interests of the participants Sustainability of any program requires interest be present in the community to address the issue. Injury prevention programs encompass a wide variety of issues and approaches which can be tailored to those which are important to the community and compatible with local resources, knowledge and attitudes. However, this can only be done if the researchers takes the time to learn from the participants.

Participatory Action Research Advantages of this approach are: 3. Research can continue and new programs can be developed in the future When members of the community are trained in methods of research, monitoring, and evaluation, they are able to develop new programs to address emerging issues and to alter programs which no longer meet important community problems.

Conclusion Combing local data with active participation of community residents provides a powerful approach to sustained development of injury prevention programs in areas where programs have been neglected The goal of this type of research approach is to train and to empower community residents in order that they can and will continue to foster programs in injury prevention as their community needs change, as resources change, and as injury patterns change.