Social Services in Epilepsy

Patricia A. Gibson

It has long been recognized that the social, psychological, and behavioral problems that frequently accompany epilepsy can be more handicapping than the actual seizures (1). The comprehensive care of those with epilepsy must include, in addition to medical evaluation and treatment, an assessment of the social needs and concerns of the patient. As Dr. David Taylor, a neuropsychiatrist in Wales, pointed out some time ago, people suffering from epilepsy are in a particular “predicament.” How any given predicament is being experienced depends on the personal history of the people. This personal history that is different from the history of the disorder becomes a crucial aspect of diagnosis (2). It is the role of the social worker to gather that history and to assure that the whole picture is considered in the treatment and management of epilepsy.

The first national effort to promote comprehensive care of those with epilepsy originated in the 1970s under the direction of Dr. J. Kiffin Penry, then director of the Epilepsy Branch of the National Institutes of Neurological, Communicative Disorders and Stroke. Through the efforts of Dr. Penry and others, National Institutes of Health program project grants were awarded in 1976 to develop three model “Comprehensive Epilepsy Programs” with three additional centers funded a few years later. At its inception the word “comprehensive” referred to providing multidisciplinary personnel. Dr. Penry and his colleague, Dr. Fritz Dreifuss, Director of one of the first comprehensive programs located at the University of Virginia, recognized, as did Dr. Alma Dea Morani, that the “good physician must know the whole patient” (3). They insisted that a variety of disciplines were needed to assist in the comprehensive care of epilepsy. In these days of managed health care with pressure on physicians to see more patients in shorter time, the assistance of other health professionals is even more important in patient management.

Since the beginning of these model programs the word “comprehensive” has been expanded to include all contemporary diagnostic abilities and all available current treatments for epilepsy, including experimental therapies and alternative therapies. The infrastructure of these programs also provides an opportunity for research into the basic mechanisms of epilepsy and the social issues in an effort to develop better treatments for the epilepsies.

The History of Social Work in Medicine

Dr. Richard Cabot first introduced medical social services at Massachusetts General Hospital, Boston, in 1905 to contribute to the development of preventive medicine. Dr. Cabot recognized the importance of continuity of care and therefore included social workers as home visitors in his clinic. Ida Cannon was hired as the first medical social worker. Social work provided an enlarged understanding of psychosocial conditions that could have an impact on medical conditions (4). Social work is a diverse profession with fluid boundaries. There is much greater understanding of what physicians, nurses, lawyers, and psychologists do than is the case with social workers. According to Gibelman, this phenomenon results partly from the expansive and expanding boundaries of social work and the difficulty in providing succinct, encapsulated descriptions of a complex and multifaceted profession (5). Currently, the field of mental health is the fastest growing area of social work practice. As with other professions, managed care holds the potentials of limiting the role of social workers, as well as the quality and quantity of services available to the clients in need of social services.

The Role of Social Work in Epilepsy

In 1997, a task force for the International Professionals in Epilepsy Care conducted a worldwide survey of those providing social services in the field of epilepsy (R. Brown, Personal communication with Robin Brown, Co-Chair, International Epilepsy Professionals in Epilepsy Care. Melbourne, Australia, 1997). In the United States it was found that social workers have widely varied roles in the treatment of epilepsy. Social workers were found providing patient education, individual, group, and family counseling, coordinating epilepsy monitoring units, monitoring drug studies, administering a variety of programs and services in epilepsy, advocating for patients and their families, and holding educational and research positions. Therefore, from setting to setting the role changes. Social workers are usually found in most hospital settings in the United States. They may or may not be specifically assigned to providing services to the epilepsy population. Except in special centers of excellence, most cover many population areas and do not have special expertise in epilepsy. Much of the hospital social worker’s assistance is directed toward exploring financial assistance or discharge planning for patients.

Although the role of social workers in epilepsy varies greatly, the following are some of the most common areas in which social services are provided.

Patient Education

Patient education is crucial in the treatment of epilepsy. Many authors have pointed out the need for information for patients with epilepsy and their families (6,7,8,9). Psenka and Holden stressed the importance of patient education even in benign seizure syndromes in reducing the magnitude of psychosocial disruption (10). In a review of 50,000 calls to the Epilepsy Information Service of Wake Forest University School of Medicine many patients and family members reported getting little information at the time of diagnosis (11). Patients are often ill informed about epilepsy and may harbor a variety of fears and concerns (12,13), and provision of a wide range of information in a systematic format has been shown to benefit patients in a number of ways (14). This education should start at the time of diagnosis and carried out on an ongoing basis, involving all members of the treatment team. Communicating well is not always easy and it is important to make no assumptions and evaluate the patient’s understanding of his/her condition and the medical instruction on a regular basis. Effective patient education involves the whole family and any others involved in the care of the patient. Information needs to be given on the educational level of the patient. For many patients,
interacting with their physician can be an intimidating experience and some patients are hesitant to acknowledge that they do not understand what is being said. The social worker can be very helpful as an intermediary in this communication.

In providing education, written materials are as important as verbal information. Windsor found that people could recall and apply 40% of what they heard and 70% of what they saw (15). There are a number of sources for educational materials on epilepsy. The Epilepsy Foundation has a listing of materials available through their organization. A number of comprehensive epilepsy centers have designed their own educational materials, such as the Seizureman comic book on first aid for children developed by the social workers at the Wake Forest University Comprehensive Epilepsy Center in North Carolina. Many pharmaceutical companies that market antiepilepsy medications also offer free educational materials on epilepsy. Computer resources are being increasingly utilized by persons with epilepsy and their families as a source of information.

Preventive Counseling

Preventive counseling carries patient education a step further and is an important part of the social care of epilepsy. This counseling should begin shortly after diagnosis and involve the patient, family members, and any others involved in the care of the patient. Patients and family members need to ventilate their fears, worries, and concerns. Observing a seizure, especially a tonic-clonic seizure, in a loved one can be one of the most frightening moments a person may have. Dr. David Taylor refers to this event as a “pseudodeath,” one that evokes a sense of menace and threatens the onlooker’s capacity to cope (16). Ask a loved one about this experience and observe how deeply etched this moment is in his or her memory. Expressing these concerns is a first step in the process of dealing effectively with the psychosocial impact of epilepsy. Listening without interruption to the patient’s and family’s feelings and description of the event is extremely important. Beckman and Frankel (17) in their study of the patient–doctor relationship found that in interviews with their doctors, patients were most often redirected after the first expressed concern and after a mean time of only 18 seconds. Additionally, in only 1 in 52 visits did these redirected patients return to their agenda and complete their offering of concerns. It is important to solicit the patient’s concerns and worries and to fully listen to their responses. Studies have shown that doing so actually takes less time than expected and can improve interview efficiency and yield increased data (18). Carl Rogers pointed out a number of years ago, “We think we listen, but very rarely do we listen with real understanding, true empathy. Yet listening of this very special kind is one of the most potent forces for change that I know.”

The social worker early on helps the patient and family deal with irrational fears and crushed ambitions as well as other worries. During this early stage, groundwork can be laid to help parents realize the important role their attitude toward epilepsy plays in influencing how the child will begin to feel about himself or herself. Parents need to understand how overprotection can lead to emotional crippling. The disabling potential of epilepsy depends heavily on the manner that the family adjusts to the disorder and is able to help the child cope with the issues that are a part of epilepsy. Many authors have stressed the need for a multidisciplinary approach to promote optimal care in epilepsy (10,19,20). Early intervention with counseling by the social worker can help prevent many of the social problems that frequently accompany the diagnosis of epilepsy.

Case Management

Case management involves the coordination of services from different agencies on behalf of a client. Social workers are often involved as case managers for patients with epilepsy, especially patients who have other disabilities and are unable to function independently. Needs are assessed,
and follow-up involves planning, locating resources, and monitoring services. A variety of interventions may be required and the social worker may take on an advocacy role when needed services are not available. An example of case management of a client follows:

J.H. was referred to the social worker by the pediatric neurologist who had recently seen him as a new patient. He was 16 and had moved to live with his grandparents a month ago. He had severe and intractable seizures, mental retardation, and cerebral palsy. His mother had left the family in his early years. The father eventually remarried but had recently died of a heart attack at the age of 38 and his wife did not want the responsibility of the child who was not hers. The grandparents were in total shock over these events and lacked any knowledge of resources. The social worker assisted in making an application for Medicaid and other services. Arrangements were made for him to be seen by the vocational rehabilitation specialist in an effort to develop future habilitation plans. Following this assessment an application was made to the Special Enrichment Center where he could learn social and daily living skills, as well as employment skills. This Center also functions as a sheltered workshop. J.H. entered the program at age 18 and made good progress although his seizures were still uncontrolled. Unfortunately, 2 years later, the grandfather died suddenly of a heart attack and the 80-year-old grandmother had difficulty physically managing J.H. because of his sudden falls. The social worker began working with the client and grandmother to help locate an appropriate group home situation and to work with the family in their adjustment to this new living arrangement. A group home was located and the patient was able to continue attending the Special Enrichment Center. The patient adjusted well to the group home but after the first year, because of administrative changes in the group home management, the family was informed that the client would have to move to a home with lower functioning clients. The social worker became involved again, this time in an advocacy role, and petitioned the Division of Mental Health to intercede. Eventually the patient was allowed to stay in the more appropriate setting.

Individual Counseling

A chronic illness of any type has significant impact on the lives of people it touches and there are many social and psychological consequences when people do not cope well. For some, epilepsy may be looked upon as a minor inconvenience. They have a few seizures and are prescribed medicine; their seizures come under control and do not interfere with functioning. Others are not so lucky. For this group, epilepsy is a devastating diagnosis and looms large, coloring every aspect of their being. There are various emotional responses to any illness or disorder. Although not everyone with epilepsy needs counseling or special services, on occasion, the emotional responses may be maladaptive and require intervention. The major problems that a person with epilepsy faces are functions of a number of factors—the age at onset, severity of the disorder, how the patient/family system copes or responds to the seizures, and what the quality of the interactions are among the many systems with which the patient and family must deal (21). Lau et al. in a study of 50 patients with epilepsy, found that social factors, such as self-perception and coping strategies were more powerful predictors of psychosocial adjustment in people with epilepsy than the medical factors associated with epilepsy (20). When problems begin to interfere with the client’s functioning or quality of life, then individual counseling may be needed.

Patients with intractable epilepsy are particularly vulnerable to a number of secondary psychosocial problems including depression and anxiety (22,23). In addition, low self-esteem and a feeling
of loss of control over their lives are common features of children and adults with epilepsy (24). When epilepsy is severe and persistent it is not surprising that it will be associated with behavioral and cognitive disorder, because social behaviors are every bit as dependent upon adequate cerebral functioning as cognition is.

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