Panel Three Results:
Community and Social Science Perspectives
Composed of clinical psychologists, psychiatrists, occupational medicine physicians, disaster relief specialists, and community members affected by hazardous waste sites.
To develop public health strategies to prevent and control long-term stress-related health problems in communities near hazardous waste sites. Panel members were not asked to evaluate prevention and intervention strategies associated with specific sites. They were asked to use their complementary backgrounds and areas of expertise to provide an overview of 1) what is known and not known about the effectiveness of previous prevention and therapeutic strategies in these communities, 2) the most effective methods for preventing and mitigating stress-related health problems in communities near hazardous waste sites, and 3) methods for increasing public and professional capacity to respond to psychological issues related to hazardous waste sites.
How has the extent of the psychosocial effects and possible public health impacts in these communities been assessed to date?
Most of the recent psychological research on the effects of technologic disasters has been designed according to the principles of psychiatric epidemiology with the use of case-control populations and known standardized instruments. According to these studies, psychological disorders found in populations possibly exposed to hazardous substances are similar to those found in communities that have experienced natural disasters: heightened incidence of anxiety, clinical depression, and post-traumatic stress disorder (PTSD).
Dr. John Eyles began the discussion on this question. The following is a summary of the discussion and is divided into three parts:
How we currently assess impacts and effects: Currently, there are three to four scientific ways of assessing psychosocial impacts and effects. These include a small number of epidemiologic studies, clinical studies, case studies of communities, and the use of key informants' studies. Epidemiologic studies are usually based on cross-sectional or case-control designs. The evidence from these few epidemiologic studies does not seem to be particularly strong. Clinical studies are symptom-based and rely to a great extent on case studies by physicians or self reports of symptoms. Studies based on physician judgments are few in number and have very small sample sizes. Therefore, they lack the power to provide the usual quality of evidence that scientists want. Many more of the studies of psychological effects rely on self reports, and there are differences of opinion on what is scientific evidence. Some in the scientific community regard self-reports as quite meaningless and open to reporting and observer biases. Others regard self-reports as key information sources. Self reports are the first means to identify the psychosocial impacts of any event. Key informants can be used to help chart out the effects on communities. This might be useful in the early stages as a rapid assessment technique.
How we might assess impacts and effects: A determinants of health approach could be used to assess impacts and effects. This approach looks at how certain demographics and socioeconomics contribute to health, well-being, or illness. This important information can add to the assessment process. Another approach that could be used involves the values and interests of stakeholders or other involved parties. This means understanding their values and what they feel threatens their interests. This may involve property values, children, and/or the future in general. Essentially, that is what has come from the in-depth studies of Edelstein and others. For this type of study, a partnership with the community is critical. Strategies that could be used include those mentioned above, as well as data pooling to look for common themes, reviewing and learning from occupational health studies of stress, and creating and instituting rapid assessment tools to assess the problem swiftly.
The context of assessment: Responses to contaminating events are socially and culturally mediated in complex ways. To some degree, they are unique to the particular study setting and cannot be divorced from context. Each community's circumstances are unique.
Data Gaps and Recommendations
- The extent to which psychosocial public health impacts have been assessed to date is relatively limited. There are opportunities for more studies to define the problem. There are various techniques and processes that warrant further use.
- A comprehensive community needs assessment is a critical first step in shaping the design of interventions and adapting implementation plans to unique community characteristics.
What previous prevention and therapeutic strategies have been used in these communities? What were the results of these interventions and what issues did they raise?
Prior research on stress prevention and therapeutic strategies following trauma has focused primarily on natural disasters. Scientists and clinicians recognized that some people who have been exposed to various natural disasters, such as earthquakes, hurricanes, and floods, could develop psychological sequelae such as major depression, chronic anxiety, and PTSD. As the number of studies devoted to the psychological effects of disasters increased, findings indicated that disasters did not always result in widespread, severe psychological disturbance. These studies found that only a relatively small number of disaster victims suffer serious, long-term psychological damage. A somewhat larger portion of the affected community may be expected to manifest at least transient symptoms of various forms of emotional disturbance (31). Current thought among disaster relief workers is that these symptoms of emotional disturbance are normal reactions to an extraordinary and abnormal situation and should be expected.
The treatment model used for victims of natural disasters involves aggressive outreach and crisis counseling that combines psychological support, education, and practical disaster relief (e.g., helping meet needs for food and shelter). People who appear more severely affected by the disaster are referred to the local mental health system for continued care. The use of crisis intervention techniques in the aftermath of a disaster is recommended for several reasons. 1) As previous studies suggest, disaster victims typically do not sustain serious, long-term mental health impairment. Much of the initial mental health response involves normalizing feelings. Victims need to be assured that the emotions they are experiencing are normal. 2) Disaster victims are often reluctant to seek out mental health services or facilities on their own. Because of this, outreach to the community is essential. 3) Outreach and crisis intervention emphasizes the use of paraprofessionals and volunteers. Individuals who are perceived by the affected community as "being one of us" can play a vital role in intervention activities.
In addition, 14 key concepts of disaster mental health have come out of the outreach/crisis intervention model (32). These key concepts could serve as a valuable framework and guide for planning and implementing successful mental health services at hazardous waste sites. These concepts are as follows:
- No one who sees a disaster goes untouched by it.
- There are two types of disaster trauma: individual trauma and collective trauma.
- Most people pull together and function during and after a disaster, but their effectiveness is diminished.
- Disaster stress and grief reactions are normal and appropriate responses to an abnormal situation.
- Many emotional reactions of disaster survivors stem from problems of everyday living brought about by the disaster.
- Disaster relief procedures have been called "The Second Disaster."
- Most people do not see themselves as needing mental health services following a disaster and will not seek out such services.
- Survivors may reject disaster assistance of all types.
- Disaster mental health assistance is often more practical than psychological in nature.
- Disaster mental health services must be uniquely tailored to the communities they serve.
- Mental health staff need to set aside traditional methods, avoid the use of mental health labels, and use an active outreach approach to intervene successfully.
- Survivors respond to active interest and concern.
- Interventions must be appropriate to the phase of disaster.
- Stable support systems are crucial to recovery.
Mrs. Cynthia Babich reported her observations of the things that have been conducted at the Superfund site in her community. There are now some counselors in the community who are talking to some of the people, but there is a stigma associated with doing so. Some residents, particularly the men, see asking for help as a weakness. Mrs. Babich believes what is needed is someone who is going to listen to the community members and document what they are saying.
Dr. Brian Flynn followed up by talking about nine strategies that have been consistently used in disaster mental health programs. These experience-based, not research-based, strategies are as follows:
Early intervention: Intervention should begin as soon as possible. It is a myth that psychological problems occur only later in a situation. We know a great deal about what can be done early in situations to help mitigate stress. Providers who assist early are much more accepted than those who are late-comers. This can be a problem because the majority of Superfund sites have been around for many years, but the sooner psychological aid is provided, the less total stress individuals will experience. Additionally, residents at hazardous waste sites may believe that their circumstance is something that cannot be understood by someone who has not shared the experience. Early intervention allows providers to see, hear, and feel experiences very similar to those of the residents. It can also help establish the community members' trust in the provider.
Validation: The effects of stress are real, and any prevention or intervention strategy should include validation of the stress-related problems.
Normalization of reactions: Many people find themselves demonstrating signs or symptoms of stress. Counseling interventions, such as those based on psychoeducational or psychosocial models, are more appropriate as opposed to the more traditional mental health interventions. This counseling should help individuals understand that their responses are normal, typical, and expected in an abnormal situation.
Telling of the story: The intervention strategy should promote the "telling of the story." This seems to be a common thread across various kinds of trauma. There are three benefits to telling one's story: 1) it is a way to gain control of an experience that is outside of the individual's past experience; 2) it can have a cathartic effect; 3) it provides an opportunity for bearing witness to what happened and for documenting and putting on the record what the experience has been. Whether you're dealing with disasters, refugee situations, torture situations, or other situations, it seems to be important for people to tell their story.
Outreach orientation: People do not usually seek assistance for a variety of reasons, including stigma and not identifying themselves as appropriate recipients of psychological services. Providers of intervention strategies need to be aggressive in their outreach to people in the community. Services will have to be provided in nontraditional, community-based settings where people live, work, and socialize.
Blending response teams: Licensed mental health professionals and trained community leaders should work together. Some services could be provided by trained nonprofessionals who are part of the community. This community involvement helps to build trust and may be more appropriate where ethnic and cultural differences exist between citizens and outside intervention teams.
Designing and encouraging actions: Actions that involve the community and increase community control have a high probability of some success.
Training: A need for training in crisis intervention and traumatology exists; therefore, training should be provided to survivors on how to prevent, identify, and reduce their stress. Training should also be provided to the members of helping professions (e.g., clergy, school counselors) and mental health professionals or any others in the community that people may turn to for assistance.
Consulting with community leaders: It is important to establish ongoing communication with community leaders and to keep them involved throughout the process.
The rest of the panel discussion focused on which of the nine techniques outlined by Dr. Flynn would be most amenable or transferable to a Superfund setting and which might be problematic. Panel participants stated that in contrast to disaster situations, in which communities affected usually pull together, community division often exists at Superfund sites. Communities tend to coalesce around problems, so having a community take an action that is noncontroversial is tougher in this context. Consultation with community leaders may not be as easy at a hazardous waste site as it is in a natural disaster. The types and number of support systems may be lacking.
Validation may be difficult as well. Natural disasters are more salient. People can see the problems and aftereffects. This is not always true of Superfund sites where the contamination is often invisible. Some may deny there is a problem. Others may state that they know or feel there is a problem but not be taken seriously. At times, environmental agencies are a part of the problem because they state there is an environmental problem but do not show compassion for the affected community or provide a rapid response to the problem. Government agency staff do care, but often are experiencing their own set of frustrations and worries.
Data Gaps and Recommendations
- If early interventions are provided, many of the remaining eight actions would not be needed.
- Some type of measurement and program evaluation should be built into any intervention strategy to determine its success.
- Another action to take is to "help the helpers." Sometimes those most impacted are the helpers-researchers, government field workers, therapists, or the first responders. As a result of overwork, they may experience burnout. Helpers should be trained to recognize early signs of burnout, and support should be provided.
What methods are most effective in preventing the acute stress of learning of the existence of a hazardous waste site from becoming chronic in adults? In children?
The basic principle in working with children or adults who have experienced any type of disaster is to remember that they are essentially normal people who have experienced great stress (33). Many people can effectively use their existing coping skills to deal with the consequences of a traumatic event if they are made aware of the normal and predictable responses to expect as recovery progresses. Thus, education about stress reactions and ways to handle them should be provided. This normalizing or validating of feelings and help in recognizing some very common signs of a stress reaction can help to mitigate the effects of acute and chronic stress in both adults and children.
For adults living near a hazardous waste site, the uncertainty about health consequences inherent in exposures to hazardous substances will most likely be their greatest source of stress. For example, in some cases people (e.g., community residents, epidemiologists, and health assessors) aren't sure who has been exposed to a hazardous substance or how much they have been exposed to. In most cases, the exact degree of individual exposure, in terms of duration and level, cannot be determined. This creates uncertainty and heightened feelings of powerlessness and lack of control, both of which are associated with higher levels of stress (34). Access to information and educational activities about the consequences of toxic exposure is necessary to prevent or mitigate chronic stress in these adults; therefore, primary care physicians and mental health and other health care providers should be informed about the contamination, its potential health consequences, and field assessment difficulties that may contribute to their patients' feelings of uncertainty (e.g., fluctuating contamination levels). Provider support and understanding of the contamination and psychological stressors associated with living near a hazardous waste site are vital to helping individuals living near the site cope with the situation.
Dr. Charles Figley discussed the possibility of using PTSD research; traumatology research such as that done with prisoners-of-war (POW) and missing-in-action (MIA) families, agent-orange families, hostage families, and terminally ill patients; and crisis intervention strategies as models for preventing acute or chronic stress in individuals living near a hazardous waste facility.
Dr. Figley also made the following recommendations for preventing stress in adults and children living near a hazardous waste site:
Establish trust: The situation invites a general loss of trust in others and in government specifically. Efforts will have to be made to establish trust and credibility. If you don't have trust, no one is going to listen to you, not to mention hear you or follow your interventions.
Bear witness: Individuals should be encouraged to bear witness. They should be given the opportunity to articulate what took place and what happened to them, why it happened, and their beliefs and fears about the situation. One very effective strategy that has been used in traumatology research is to videotape these conversations so that when a person is talking into the videotape, they are talking to everybody. This method can provide an oral history, not only for the person giving the account, but in many cases, for those people who don't want to bear witness. For those community members who don't want to share their pain and emotion, they can watch the videotapes and their heads will nod quite a bit, and they will feel understood. They will say "that person on that video is like me."
Identify standards of measurement: Substantial research exists with respect to understanding the immediate and long-term psychosocial consequences of highly stressful events. What we now need is a model to understand the trauma induction and trauma reduction processes. On the basis of an established model, ways to prevent suffering and other consequences can be identified-ways to stop and prevent peoples' suffering from reactions to a traumatic event as thoroughly and quickly as possible.
Identify needs: Do not assume knowledge of what a community wants. Ask the community members to identify their needs and goals. Listen during the process of bearing witness and identify what the individuals think their needs are.
Implement interventions: Implement the most appropriate types of interventions (e.g., stress reduction and management, psychosocial education, post-traumatic stress symptom elimination) one at a time or together.
Utilize existing infrastructure: Utilize the media, business groups, religious organizations, school systems, and other social institutions as a means to providing psychosocial education to both adults and children.
These principles are the same for children and adults. What is critically important, however, is that children even more than adults live in an external world, defined by the outside environment. Any time intervention is necessary, even in terms of assessment, the work must involve the significant people in the children's lives.
Data Gaps and Recommendations
- A number of public health agencies in the United States are finding their resources increasingly cut back. Their efforts to try to get out into the community and to deal with the behavioral and social issues around a site are often limited by a lack of adequate resources. However, a number of individuals in the faith groups or church communities share our values about health. By enlisting these individuals, we may find very natural allies and trusted sources in a community. These groups may be able to reach the people we cannot.
- In preventing stress, anger must also be considered. Anger often exists at these waste sites and needs to be validated. It's part of the method of coping for some. When people are angry, they need to know that they have every reason to be angry. In both natural and technologic disasters, there are so many system frustrations and problems that are real that, as they build up, people naturally react with anger. That's when intervention is needed to help them find and solve problems that are within their control to change and cope with those that are not.
What are the best methods to prevent demoralization fromm occurring in these communities?
Demoralization, according to the Comprehensive Textbook of Psychiatry, is a "state of mind of hopelessness and helplessness" (35). Demoralization is a common distress response when people find themselves in a serious predicament and can see no way out. Demoralization stems from a perceived lack of control. Control is defined as the belief that one can influence an event; whereas, lack of control is defined as the belief that nothing one does or can do will change what will occur (19). Some studies of technologic disasters have reported increased rates of demoralization in affected communities (8, 19). For example, Dohrenwend and colleagues (36) found evidence of heightened demoralization during the months following the Three Mile Island incident.
Dr. Jeff Kindler and Dr. Charles Figley led the discussion on the issue of demoralization.
Dr. Kindler suggested that environmental agencies concentrate on enhancing two-way communication between agency representatives and community residents. In other words, communication plans should be designed to increase the mutual understanding of issues, data, and possible solutions to the problems that are contributing to community demoralization. These agencies should continually strive to improve their partnerships with communities and the sharing of decision-making power with residents.
Models for improving partnerships can be found in the adult education, group dynamics, and interaction analysis research literature.
When communicating scientific information in communities, residents need to be assisted in processing this information through an encouraging, indirect style. This will help residents talk about and discuss their concerns about the meaning of the information provided. Talking with the community and inviting residents into the process helps reduce their anxiety, anger, and suspicion and is a good beginning to building trust. In return, communities give back ideas that agency representatives can use to develop better scientific models to help us all.
Dr. Figley stated that there is significant overlap between demoralization and learned helplessness. There are a number of ways to prevent learned helplessness. Part of demoralization and learned helplessness is the extensive isolation and not knowing that other people are having the same experience. Communities should be given as much accurate information as possible so they can devise solutions or options to improve their situation. A helpful intervention may be to help them connect with other communities that have experienced similar circumstances.
Data Gaps and Recommendations
A primary way to prevent or lessen demoralization is to help citizens gain a sense of control over their situation. Government, state, and local agencies should seek meaningful input and participation of community members. Of particular importance is residents' involvement in the decision-making and problem-solving processes concerning the cleanup of their community. In most instances, the cleaning or remediation of the waste site is lengthy, and causes residents chronic stress and feelings of helplessness. Cleanup of the site should be quickened, when possible, and the community should be involved throughout the process.
Demoralization often occurs when people feel isolated and alone. Often conflicts occur between those neighbors living within the impacted area and those living outside the impacted area. Many of those living within the impacted area may disagree on exposure and health effects. Better communication between neighbors could prevent this.
How can seriously affected individuals be identified and appropriately referred in these communities?
An effective method for identifying seriously affected individuals is an active outreach approach like that used in crisis management programs after natural disasters. The first step is to perform a thorough needs assessment with the community to determine which individuals and groups are most severely impacted and which persons are experiencing the most difficulty. The second step is to contact those who can be assumed to be in the most need of psychological help. Such persons include those who have lost one or more family members, those whose homes have been destroyed, those being relocated from their homes, those who are seriously ill, and those who have been or are currently under psychiatric care (37).
In toxic contamination, there may be an absence of concrete (i.e., identifiable) death and destruction. High-risk groups should include those who are likely to have been exposed to chemical hazards or who have experienced property devaluation. Underserved segments of the population, such as the poor and racial and ethnic minorities, should be given priority as well. The third step should be to attempt to reach those who are geographically isolated or without transportation.
Educational efforts should be designed to reach as many people as possible and should express simple themes relating to Superfund sites and communities, such as stress reactions and management. Educational materials should also include information about available sources of mental health services and provide specific directions on how to locate help. Because people often identify "mental health" with "mental illness," measures should be taken to avoid these labels. Emphasis should be placed on the common practice of people experiencing stress to use such services.
Not all community members will experience the same types of needs at the same time; therefore, the needs assessment should be ongoing and should include periodic reassessment of both mental health needs and services.
Dr. Brian Flynn led the discussion on this issue.
In some cases, these individuals will "self identify," i.e., they will seek treatment on their own. Others may be identified by their support systems (e.g., family, friends), while others may be identified by their family doctors, counselors, or other health providers.
Once these individuals are identified, how they are referred for further treatment varies. Referral depends on their eligibility for treatment and whether they have the financial resources (e.g., private monies or health insurance) to cover treatment costs. They may be limited in their choice of providers for treatment, and their geographical location may hinder access to treatment.
To whom they get referred may vary as well. Before referral, trained professionals with expertise in crisis counseling or traumatology should be identified. Often the local mental health system is the least prepared to handle these problems. Its services and resources are generally restricted to those with serious mental illness and/or drug addictions. In addition, they often lack staff with expertise or training in crisis counseling or disaster relief work.
The expertise of volunteer providers should also be qualified. Sometimes those who go out of their way to volunteer their help are the least prepared and qualified. Additionally, mental health providers should coordinate their efforts and establish a close link with the primary care physicians in the area. There may be a need to provide training to the mental health and primary care providers. This training should be designed to help providers develop a sensitivity to the issues of contaminant invisibility and health uncertainty.
Data Gaps and Recommendations
Because individuals stress response can vary, those living near hazardous waste sites will differ in the degree of stress they exhibit. Some may experience little or no stress, others a moderate amount of stress, and some will exhibit high levels of stress. Individuals who exhibit high levels of stress might include those who are unable to deal with the situation because of inadequate coping skills, an inadequate support system, a lack of trained providers to accurately diagnose and treat their problems, or a preexisting mental or physical illness. Those experiencing high stress levels may require more long- term, structured treatment, so identification of these individuals is important.
Public health agencies should be in a position to deal with stress or mental health problems emerging at waste sites. Unfortunately, they are not in that position at present. This is one of the problems facing public health officers right now: the whole business of redefining the role of public health.
What is the best method for increasing public and professional capacity to respond effectively to psychological issues related to hazardous waste sites?
One of the most effective ways to build capacity within a community is through education. Neither public nor professional community members can effectively respond to psychological issues unless they understand what those issues are. An awareness and understanding of disaster-related psychosocial effects, in particular those associated with living near a hazardous waste site, are vital to increasing a community's ability to respond. An effective way to provide this education is by establishing a community-level outreach program.
The discussion centered around five key factors for increasing public and professional capacity:
Community-based education: Community-based education programs would help to heighten awareness of community members, public health professionals, and providers and to teach them how to identify psychological sequelae.
Evaluation: An evaluation of any existing programs in the community should be conducted to determine their appropriateness and usefulness in addressing psychological issues.
Empowerment: Ask community members what their needs and concerns are. Give them the information and training they need to help them understand and cope with the problem. Agencies should form partnerships that enable discussions and decisions about their community.
Collaboration: Trained mental health and health care providers should collaborate and communicate with each other on the issues.
Data Gaps and Recommendations
- Increase public and professional capacity for responding, including making the issue of psychological responses at hazardous waste sites less marginalized. Rather than "preaching to the choir," attempts should be made to bring this social issue to the attention of the American public.
- More must be done to enable communities to respond to the problem. Ask communities what assistance, resources, and education efforts they want, and then make sure you can come through for them. Give them technical assistance and education. Teach them how to access environmental resources from the Internet, libraries, and other information sources.
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