The severity of a person's epilepsy depends partly on how the patient and family subjectively experience the patient's seizures. A patient-based seizure severity scale, which incorporates the patient's perspective on seizures, has been developed as an outcome measure for treatment.19 The patient's definition of control is also necessary to determine, which may vary from the provider's or family's perspective. Many persons with epilepsy focus on control of their seizures, whereas others hope to control not only their epilepsy but all its consequences as well. The clinician should explore these different objectives early in the treatment period so that appropriate goals can be set.
The psychosocial and functional problems that people with epilepsy may encounter can be grouped into three main categories using a model of enforced dependency.21' These categories are personal care and safety, mobility, and social relationships and community living (Fig. 5.1). For each category, the effect of seizures, medications, psychosocial concerns, and resources needs to be explored, as does the degree of dependency present.
Persons with epilepsy face additional demands when they are parents. Careful planning and extra support are essential for effective family functioning. Concerns in pregnancy may range from the effect of seizures and medications on the fetus to postpartum worries about breast feeding and safety. Safety remains a concern throughout life for parents with epilepsy, particularly those with uncontrolled seizures. Other parenting issues, such as involving a child in caring for a parent during or after a seizure or explaining seizures to a child, need to be addressed with all families.
Personal Care and Safety
First aid for seizures
Fears and feelings about seizures
Lifestyle modifications for seizure control and safety Sleep, rest, and nutritional status Home management Financial ability to provide for self and family Access to health care Mobility Physical deficits (permanent or temporary) affecting walking, sitting, stair climbing, traveling, exercising Effects of medications on movement, coordination, balance, vision Potential for injury and need for safety precautions Ability to drive
Availability of accessible alternative transportation Recreational opportunities
Social Relationships and Community Living
View of self and others
Cognitive or emotional problems affecting behavior Perceived stigma Education Employment Social skills Social opportunities Sexuality Relationships
Housing or independent living Community involvement
Figure 5.1 Psychosocial and functional aspects of epilepsy.
Couples may find that epilepsy in one partner interferes with sex, intimacy, and sexuality. For example, having a seizure disorder may make a person feel unattractive and undesirable because of an altered self-image. Certain antiepileptic medications may cause cosmetic problems, such as coarsened skin, darkened facial hair, or periodontal disease, that may contribute to those negative feelings. Normal behavior during sexual activities, including abnormal breathing, altered facial expression, or stiffening of the body, may mimic seizure activity, causing patients or their partners to distance themselves or avoid sexual activity. Persons with epilepsy often worry about the possibility that they will have a seizure during sex. It is essential to address the impact of epilepsy on relationships and intimacy in counseling.
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