Executive Summary

Introduction

Although much has been written about the physical health effects of toxic substances and much research is underway today, there has not been a compilation of the social and psychological effects that exposure to toxic substances can engender. In September 1995, ATSDR co-sponsored with Emory University and the Connecticut Department of Health, an expert panel workshop on the Psychological Responses to Hazardous Substances. The purpose of this workshop was to thoroughly explore and examine all that is known about how communities and individuals respond socially and psychologically to hazardous substances and the possible effects of those responses on their health.

To present a broad view of this complex and intertwined subject, many different perspectives and viewpoints are presented. Both community members and scientists from different disciplines, including social, psychological, and neurological, were invited to interact and present their opinions. What emerged from the panels is an initial attempt to define and discuss a newly emerging public health issue how to respond to the psychosocial distress in communities affected by exposures to hazardous substances.

The approach taken during this workshop reflects the complexity of the topic to be examined. The workshop used the holistic biopsychosocial model as its underpinning philosophy. This model, as opposed to the Cartesian dualistic model, which defines the body as separate from the mind, assumes that health is an intertwined, inseparable entity made up of biological, psychological, and social factors. Therefore, not only were physical factors (e.g., hazardous substances and their potential impact on the nervous system) and the physical effects of psychological stress under discussion, but also how psychological coping skills and social influences operating at Superfund sites can affect the health of both individuals and communities.

The workshop consisted of three panels focusing on three sets of issues. Panel One (Biomedical and Psychophysiological Effects) examined the possible biological effects on the public's health related to the chronic stress documented to occur in communities near hazardous waste sites, as well as how to perform neurobehavioral testing to differentiate between neurotoxic effects of chemicals and psychological stress effects on the nervous system. Panel Two (Community and Social Science Perspectives) discussed how people respond psychologically to exposures to hazardous waste and the effect social and cultural factors have on community reaction to hazardous waste sites. Panel Three (Protecting and Promoting Psychosocial Health) began developing public health strategies to prevent and mitigate psychosocial distress related to exposures to hazardous substances.

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Workshop Findings

The first panel had the task of examining the biological portion of the biopsychosocial responses to exposure to hazardous substances. This area involves many topics such as:

• How does the chronic stress, described in studies of communities near hazardous waste sites, affect public health, if at all? To what disease states would it render people susceptible?
• In cases where sufficient levels of community exposures to neurotoxins have occurred (e.g., spills), can organic effects from exposure be differentiated from psychological effects of the trauma of being exposed to a spill or high-dose exposure?

The neurobiology panel noted the significant lack of information available on the subjects they were given to consider. They stated that more studies are needed on how often communities near hazardous waste sites suffer chronic stress reactions. There is however much that is known about psychological stress and how it affects health. Psychological stress causes both psychological changes that can be measured by self-reports and objective tests as well as physical changes such as increased blood pressure, heart rate, and biochemical parameters (e.g., changes in stress hormones). Stress reactions have been studied in both individuals and communities near hazardous waste sites but the study of the full effect on the public's health, in terms of specific disease outcomes, is still in the very early stages.

The panel discussed ways to clinically examine an exposed individual and differentiate whether or not the results seen are from neurotoxic chemicals or stress. The importance of careful history-taking (especially to determine exposure parameters) was emphasized as well as the importance of correctly interpreting the results of neuropsychological test batteries.

The second panel, Panel Two, was composed of psychologists, social scientists, and community members, (along with all the other panels) who outlined the unique aspects of the psychological and social responses to toxic exposures and the reasons behind these responses. One of the first and most important points they emphasized was that the viewpoint of the exposed person is crucial to understanding the diverse reactions that can occur in affected communities; that community members must be accepted as experts on their own community. A second significant point made was that the majority of the responses people have to exposure to toxic substances are normal (i.e., normal people behaving normally in an abnormal situation).

There are many reasons why psychosocial responses to hazardous substances are unique.

Unlike the damage and injuries caused by a natural disaster, many toxic substances are invisible to the senses. This invisibility results in feelings of uncertainty. People cannot be sure without instrumentation if they have been exposed to a toxin and to how much they have been exposed. Also, due to the lag time between exposure and the appearance of a chronic disease related to the exposure (e.g., mesothelioma as a result of asbestos exposure), it is very difficult to relate past exposure to subsequent disease. Health outcomes therefore are uncertain and leave individuals with a loss of control. Two areas where people have the most difficulty coping are with uncertainty and loss of control.

In the face of no external cues and uncertain circumstances, each person affected by a hazardous exposure develops their own beliefs about the nature of the resultant harm. These beliefs are based on the facts available to them, pre-existing opinions, cultural factors, sensory cues, and the beliefs of leaders and others in the community. On the other hand, scientists tend to rely on objective data produced by specialized testing that is subject to statistical analysis. The results of surveys and studies are highly technical and may be difficult to explain to a lay audience that may not share the same underlying beliefs and values as the scientist. Also, technical experts may and frequently do differ in their interpretation of the data.

This lack of external validity makes a shared community consensus (i.e., a common point of view) difficult to achieve. Many sociologists have noted that communities affected by hazardous exposures tend to split into factions centered around shared viewpoints.

The generally long life cycle of a hazardous waste site and slow response for clean up can also strain a community's patience and lead to much frustration. At the beginning or incubation period, the threat exists but it is not recognized. During the discovery phase, the hazard is discovered and the community learns of its existence. At this point, unlike a natural disaster, which hits and has a low point after which recovery can begin, the response to a hazardous waste site can take 12 to 20 years. The length of this response tends to embed communities in a cycle of discovery, warning, threat, and impact with eventual recovery taking place over a very long period of time.

One theme repeatedly mentioned by community members and social scientists was the importance of understanding how each community is affected individually by its nearby hazardous waste site. Culture can have a strong effect both on how government agencies involved in the Superfund process are perceived and on how the community responds to the contamination. For example, contamination may disrupt traditional lifestyles and ties to the land and result in much more than physical or economic damage to a community or tribe. Cultural considerations also must be taken into account in communicating and working with communities.

The third panel, Panel Three, was composed of psychologists, disaster relief specialists, and community members and looked at solutions to the problems facing communities and tribes affected by toxic substances. One cause of the demoralization found in Superfund communities is a feeling of isolation because many people have not shared the experience of what possible exposure to toxic substances is like. Another cause is the difficulty of working with and trusting a complicated, multi-agency cleanup process. Panel Three made many suggestions for solutions based on past experience with disaster relief work:

• A community needs assessment based on listening to the desires of a community is the critical first step in shaping the design of intervention and adapting an intervention to fit a community. The community's permission and input should be obtained before implementing any interventions to reduce stress in the communities.
• The 14 key concepts of disaster mental health are crucial to guiding interventions in communities near hazardous waste sites. The key concept of disaster relief is that disaster stress is a normal response to an abnormal situation and that most people involved in a disaster require practical assistance dealing with problems engendered by the disaster. There needs to be recognition of the special problems of Superfund communities.
• There are specific strategies that have been used in relief work for natural disasters for many years that could be modified to use with communities affected by hazardous substances. These include early intervention, validation of the reality of disaster-related stress, educating people about the normality of disaster-related stress, allowing people to tell their story, and involving the community in the design of disaster relief activities.
• A primary way to prevent or lessen demoralization in these situations is to help citizens gain a true sense of control over their situation. As much as possible, residents need to be involved in the decision-making and problem-solving processes involved in the public health response to and the cleanup of their community.
• Education regarding the normality of stress related to hazardous substance exposures needs to be given to both community members and responders from the various agencies involved.

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Data Gaps and Future Steps

Disagreement existed among the experts regarding the amount of data available on the range of psychosocial reactions at hazardous waste sites. Some felt the evidence was overwhelming, others felt there was a need for more precise epidemiological studies measuring the levels of stress in communities near hazardous waste sites. Panel One outlined many data gaps, which, if filled, would clarify the public health significance of psychosocial distress following exposure to hazardous waste sites. To fill these gaps, instruments are needed to

• measure stress in communities affected by hazardous exposures;
• determine how special populations such as the elderly, children, and ethnic groups respond psychologically to hazardous exposures;
• estimate the time course of the chronic stress reaction at these sites;
• determine how health outcomes related to the stress of the exposures can be quantified;
• establish long-term studies of the physical effects of neurotoxic substances on the developing nervous system; and
• understand how aging affects the nervous system's response to neurotoxins.

Panel Two emphasized the strong need to understand how culture affects an individual's and community's psychosocial responses to hazardous substances and to the chance of exposure to toxins due to different lifestyles. This panel also stated the need to respect each community's values. The third panel identified program evaluation as an important area to develop when implementing public health intervention strategies designed to reduce stress.

At the conclusion of the workshop, ATSDR identified five future steps to address the issue of psychosocial effects in communities near hazardous waste sites:

1. Produce a proceedings of this expert panel workshop,
2. Publish articles in the scientific literature regarding the psychosocial effects found in communities exposed to hazardous substances,
3. Write a training handbook for local and state public health officials on ways to minimize stress in Superfund communities,
4. Develop direct interventions in communities faced with exposures to hazardous substances, and
5. Develop and implement an overall public health strategy to help prevent and mitigate psychosocial distress found in Superfund communities.

This workshop was the first step in the implementation of ATSDR's Division of Health Education and Promotion's Psychological Effects Program. The Program comprises a 4-phased approach: Phase 1-Define current science and practice, Phase 2-Develop an action plan, Phase 3-Implement a public health action plan, Phase 4-Build capacity and evaluation efforts.

The Psychological Effects Program will provide communities with the basic information necessary to help them cope with the stress of environmental contamination and potential relocation because of environmental hazards. The Program will also provide training for health care providers, social workers, and others to ensure they have the information needed to help reduce adverse health effects associated with the stress from exposure or possible exposure to hazardous substances.

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