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Preventing Chronic Disease

A Participatory Evaluation Approach

Mobilizing Neighborhoods

Local health departments alone cannot do all that is needed to make chronic disease prevention a priority in low-income communities, and to address the multitude of factors that places these communities at greater risk. A far more effective approach is to form partnerships with community residents, who have great potential to take the lead in improving community health and quality of life. Working together, the health department and residents can identify the most effective ways to build and sustain healthier neighborhoods.

This Chapter outlines the major steps involved in organizing communities around chronic disease prevention, based on the experiences and lessons of the Chronic Disease Prevention Organizing Project (CDPOP).

We assume that a local health department has already established a presence and track record of responding to the community's concerns prior to introducing it's own public health agenda. For more information on how health departments can organize community resources from the start, before selecting a specific focal issue, see The Healthy Neighborhoods Project: A Community-Building Guidebook (1.4M PDF, 102pp.).


In Contra Costa County...

Contra Costa Health Services has worked directly with low- income, ethnically diverse neighborhoods since 1996, through its Healthy Neighborhoods Project (HNP). HNP staff have helped residents to identify their community's assets, define the problems they want to address, and work toward solutions. While the health department plays a critical role in providing guidance, support and training to residents, this approach allows residents to set their own priorities and make decisions for themselves.

The health department worked with residents in the El Pueblo and West Boulevard neighborhoods for two years before introducing chronic disease prevention as a possible health priority. This commitment greatly enhanced the level of trust and credibility for the department by demonstrating its commitment to work on resident concerns rather than its own agenda. Residents became receptive to other public health issues as well.

Step One: Launch the chronic disease prevention effort

Be aware of the impact of chronic disease in the selected community
Before meeting with a neighborhood, you need to understand the chronic disease trends specific to that community. The smaller the area or group, the less likely you are to find reliable information. Collect and review any available data, and be prepared to extrapolate from more general data on the demographic group you are serving. The support of local leadership is critical. Health Department staff might meet with leaders of community organizations, neighborhood associations, and faith groups. Ask for their insights and ideas.

Introduce the initiative to the neighborhood
Once you've gathered data and met with local leaders, you can develop a variety of resident-friendly educational handouts about risk factors for chronic diseases. Incorporate key information from community leaders, including quotes or local stories that describe the issues. If possible, have community members or staff who work closely with the communities review and give input to draft materials. Since you will have some complex information to convey, combine written information with discussions or presentations whenever possible.

Announce your interest in launching an initiative to prevent chronic disease, and invite a response. You may want to present at events and meetings sponsored within the community to show an interest in the neighborhood as a whole and not just your own agenda. After describing the general concept and getting input, you may need to adapt the proposal to incorporate feedback and win the interest of the community. If the health department already has a relationship with any of these groups, be sensitive to past history and roles in the community. If there has been tension in the past, acknowledge it. You may encounter assumptions that the agenda has already been set by your agency. Be patient in establishing trust.

Identify interested residents If the local health department already has a working relationship with the neighborhood, staff and organizers can help identify residents who would be interested in getting involved-people with an interest or expertise in health, or perhaps personal experience with chronic disease. Communities concerned about environmental hazards may be especially interested in chronic disease prevention because of the suspected links between illness and environmental exposure. Meet with prospective participants, individually and/or in groups, to describe the proposed prevention effort, present data, and listen to concerns.

Develop ways to measure resident involvement You will want to evaluate the level of community involvement during the project. It is also important for residents to participate in establishing and carrying out an evaluation process. You can work with them to pinpoint the potential value of evaluation and how they can use the information to improve their efforts. With some basic training, they can help develop indicators of success, evaluation methods, and evaluation questions. They can assist in collecting information, interpreting the findings, and presenting them.

Here are some suggestions to keep in mind:

  • Document your progress toward meeting your established objectives, as well as the process of collaboration among staff, residents, organizations and other stakeholders.
  • Work with the community to determine what information should be collected and how.
  • Consider ways to ask questions in a way that make sense to those you are querying.
  • Encourage evaluators to teach residents about evaluation tools and data analysis, and facilitate residents to take the lead in setting goals and activities.
  • Organize and present data clearly, in a way that will help guide future activities.

View/Print

Measuring Resident Involvement (9k PDF, 3pp.)

Step Two: Train resident organizers

You will want to train a group of neighborhood residents to identify local risk factors for chronic disease. Work with lead organizers and other interested residents to design the training. Identify community concerns, topics for education, and potential barriers to resident participation, such as a need for child care, transportation, or translation.

Find creative ways to make the public health context relevant. You might have residents tell stories, show pictures or photos of the neighborhood, play games, or explore other non-traditional ways of sharing information. Pre-test any written materials, surveys or other tools with resident organizers and staff who have worked long-term with the community. Give participants a chance to respond to the materials and apply what they are learning to their own lives.

Provide participants with opportunities to practice using the skills they gain. Using a role-play model will provide valuable experience to them and feedback to you about how well the tools work.

In Contra Costa County...

CDPOP staff trained residents in two neighborhoods to look for six chronic disease risk factors: tobacco exposure, poor nutrition, lack of physical activity, toxic environment, stress and low socioeconomic status. A number of revisions were made to our approach before coming up with something workable. Initially, staff included violence and injury prevention in their training on public health and chronic disease. As a result, the training quickly became an all-day event. Although sessions were made interactive, the amount of information was overwhelming and too academic. Translating technical terms was also difficult and slowed discussion considerably. The training was revised into shorter, single-topic sessions that were incorporated into weekly neighborhood team meetings. A door-to-door survey was pre-tested at the all-day training and was also subsequently shortened, simplified and given more community-focused examples.

Step Three: Map neighborhood assets and challenges

Once resident organizers have received enough training to feel comfortable with identifying chronic disease risk factors, they can map the assets and challenges in their community. Encourage them to build on any recent efforts to collect information about the neighborhood.

Organizers can identify many resources as well as problems or blights just by walking around the neighborhood. Some may want to take photographs to document what they see. Children may want to draw pictures of what they like and don't like about their neighborhoods. Residents may also decide to conduct door-to-door surveys to gather additional information and to encourage others to get involved. The health department may provide valuable input in the development of any survey or interview questions.

View/Print

Appendix H: Neighborhood Survey (17k PDF, 2pp.)

After organizers have completed the mapping, they can then catalogue assets that the neighborhood might build upon to solve these problems. Assets can fall into a number of categories:

  • Individuals: Residents with skills in health or education, such as retired teachers and nurses; residents who can serve as natural leaders or volunteers; translators.
  • Cultural assets: Cultural networks, extended families, values and traditions that support health and community involvement.
  • Local institutions: Churches, businesses, senior centers, schools, government programs, community organizations.
  • Networks: Civic, neighborhood, and business associations.
  • Physical assets: Parks, vacant lots, open spaces, community gardens, community facilities.

Staff and lead organizers may find it useful to organize the survey and walk-around results according to themes of public health and chronic disease. Photographs may be enlarged and used to help residents recall their thoughts as they tell stories about their neighborhood.

Work with the organizers to identify which assets and challenges link to multiple risk factors for illness. For example, you might find that parents won't let their children play outside because of speeding cars or gang activity. The children don't get exercise and the parents are chronically stressed from worrying for their safety.

View/Print

Uniting Community Assets With Public Health (12K PDF, 1p.)

Step Four: Set priorities with the community

Ask organizers and other involved residents to help plan a community forum where residents can learn about the inventory results, discuss and add to them, and prioritize concerns in their neighborhood. You can publicize the meeting in a variety of ways, including flyers, door-to-door outreach, phone calls, and announcements at community gatherings.

Community forums allow residents to define the issues and begin developing solutions. They are the heart of the project at this stage. Since the process should be driven by the community, allow only residents to vote. Department staff and community agencies must understand the importance of stepping back. In this setting, staff should be considered resources to the group, not experts.

Community forums are also the place to define expectations, roles and responsibilities for community partners and the health department. It is essential to encourage an honest discussion about the historical role of the health department in prevention programs. Acknowledge concerns, questions and recommendations as they are raised. If you cannot address an issue in the moment, make a note of it and make a specific plan to revisit it. A visual recording afirms that these concerns have been heard and this will help engender trust.

Step Five: Plan and carry out actions with residents

Once priorities are stated, work with resident team leaders to create a plan detailing strategies and activities to pursue. Consider how to accomplish short and long-term goals. Action Plan-Sample Form (7k PDF, 1p.), Action Plan-Tracking Form (7k PDF 1p.) and Neighborhood Strategy (7k PDF 1p.). Be sure to identify:

  • Who will take on specific assignments
  • Anyone not present who needs to be involved
  • Relevant resources inside and outside the neighborhood
  • A timeline for completion
  • A method for evaluation

In Contra Costa County...

Trained resident organizers took to the streets to identify their community's assets and challenges. The findings were organized in relation to chronic disease risk factors, and presented and discussed at community forums.

One neighborhood chose physical activity as a priority. The adults formed a weekly aerobics class with on-site childcare as well as a walking club, which participated in a breast cancer walk-a-thon.

Another neighborhood focused on creating a healthier, less stressful environment. They established a Neighborhood Watch program and worked on a more positive police presence by organizing quarterly meetings with local beat officers. They also worked with the sanitation district to organize community cleanups, with 200 participants.

The health department linked residents with policy makers and other resources to assist them in sustaining their efforts. Fore example, staff taught residents about dumping laws and worked with landlords to request additional dumpsters and trash pickups. They also worked with child care agencies to conduct workshops on parental stress, and to identify job opportunities and training for those interested in becoming child care providers.

Step Six: Evaluate community improvement efforts

Residents should help determine the evaluation process for the project, but their degree of interest and participation will vary. Explore with them the ways in which evaluation could be useful to the project. For example, the evaluation can serve to document issues of concern to the neighborhood, demonstrate accomplishments, help bring in funding, and give residents concrete information to share and celebrate. Work with them as much as possible to enable them to assess how well they've addressed their objectives, to identify strategies that have worked, and to determine their next steps. While the evaluation should identify barriers that need to be overcome, it is equally important to identify successes and solutions to challenges that have arisen.

Remember that residents often lack experience in designing a formal evaluation. They may see it as a time-consuming and irrelevant activity that will distract them from the more important work of accomplishing change in their community. The language of evaluation-goals, objectives and activities-may add to their reluctance. One way to counter this is to describe your efforts as "telling the story of our experience so we can learn from it," rather than using more academic evaluation terms.

Limited time and money may also restrict your ability to involve residents in all aspects of evaluation design and implementation. If resources are seriously restricted, you may choose to evaluate only the most important objectives. In this case, it is essential that residents identify the objectives or outcomes they are most interested in reviewing.

Work within your limits to evaluate your progress as fully as possible. Review the findings with at least the resident organizers, and work with them to formulate how the information will be presented to the broader community and to any funders. This cooperative effort will help give the community a sense of ownership and demonstrate your commitment to an ongoing relationship.

[next section: Working with Health Coalitions]

Content provided by the The Community Wellness & Prevention Program of Contra Costa Health Services.

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