Effective Communication with Women Who Have Epilepsy

All people with epilepsy should be offered accurate, relevant, culturally sensitive information in a timely manner. Many women with epilepsy have unique health care needs that should be addressed to provide optimum medical oversight, to promote self-management skills, and to offer counsel that will enhance quality of life. Various health care professionals may be involved in providing access to appropriate care, but it is often the responsibility of the physician or the nurse to initiate and maintain effective communication with women with epilepsy, with an emphasis on a team approach.

Communication implies two-way interaction and it is crucial that women with epilepsy consider themselves active members of the health care team. There cannot be effective management of seizures and treatment options without the information and experience that only women with epilepsy can provide.

Setting Goals and Prioritizing Needs

Each person with epilepsy may have questions about diagnostic criteria, seizure types, neurodiagnostic tests, anti-epileptic drugs (AEDs) and potential side effects. During the initial phases of treatment these medical issues may take precedence over long-term decisions about quality of life. However, the woman with epilepsy will likely have questions about the comprehensive impact of epilepsy on her future and concerns about her role in addressing these larger questions. The following actions by health care providers can facilitate a team approach to the overall plan of care:

Assess patient readiness and level of understanding. This assessment may be based less on chronologic age than cognitive ability, developmental level, and emotional adjustment. Recognize barriers to effective communication specific to women with epilepsy, including seizure frequency, memory loss, and undesirable side effects from AEDs.

Provide information about epilepsy and treatment options in a format the woman with epilepsy can understand, with appropriate cultural interventions, including language interpretation if indicated.

Provide a receptive environment for questions from the woman with epilepsy. Encourage her to write down questions and other pertinent information before the appointment. Consider review of information prior to appointment for most efficient use of time.

If the woman with epilepsy agrees, include family members or friends in appointments to provide insights about seizure history and to help with understanding treatment plan and follow-up.

If regular appointments are oriented to medical details and lack time for quality of life issues, provide the option for a longer scheduled appointment or consider a separate appointment to discuss these concerns. If physician time is limited, enlist a nurse or other health care professional to provide comprehensive follow-up and management.

Coordinate participation of all necessary health team members including obstetrician/gynecologist, psychologists or other mental health care professionals, and neurologists, nurse clinicians or other specialists in epilepsy management.

Encourage active participation of the woman with epilepsy in all phases of her treatment plan. Acknowledge the range of decisions facing the woman with epilepsy, while helping her prioritize and set realistic goals.

Depression is a common comorbidity of epilepsy. Be alert to signs of depression in women with epilepsy and treat if present.

Encouraging Self-Management

Self-management is the process of empowering a woman with epilepsy to take control of her epilepsy and the chosen treatment program. It depends on individual readiness and understanding and may happen gradually. Self-management is important since most women with epilepsy live in the community and have only intermittent contact with health care providers.

Information: Accurate knowledge about her seizures and the treatment options is essential for a woman with epilepsy to participate in a self-management health care plan. Initiate communication about health issues specific to women with epilepsy, such as hormonal influences on seizure control and AEDs, family planning and pregnancy, and parenting skills.

Safety: Information about appropriate safety measures can increase self-confidence in a woman with epilepsy. Encourage her to assess her own seizure pattern and her home or work environment, and support realistic changes in lifestyle. Contact the Epilepsy Foundation for additional information on safety factors.

Medication Adherence: Adherence to an AED schedule is one measure of successful self-management for women with epilepsy. Often referred to as "medication compliance," adherence implies active involvement by the patient in planning a regimen for AED dosage, whereas compliance denotes yielding to another’s authority.

Understanding AED nonadherence may be crucial for effective communication between women with epilepsy and health care providers. Nonadherence may be related to avoidance of undesirable side effects such as sedation or poor coordination, or issues of quality of life like reduced libido and impaired sexual performance. Cosmetic side effects including weight gain or loss and hirsutism are important considerations for women with epilepsy.

While the choice of an AED should primarily depend on its effectiveness for seizure control, information from the woman with epilepsy about undesirable side effects may be critical in addressing nonadherence. It is important for a woman with epilepsy to understand that nonadherence to a medication schedule is not "failing" nor does it make her a "bad" patient. The most helpful intervention is a nonjudgmental problem-solving approach that includes her insights and suggestions, with praise for successful adherence.

Community Resources: Epilepsy, like many chronic disorders, may have significant impact on quality of life, and the woman with epilepsy and her family may need services apart from appropriate neurologic care. It is important to provide women with epilepsy information about community support systems, including health care professionals with skills in psychosocial intervention. Legal advocacy or employment counseling may be important for some women with epilepsy. There may be financial assistance available through local or state social services agencies.

Support groups, self-run or professionally led, can offer additional education about epilepsy and the opportunity for shared feelings and experiences. See also our eCommunities interest group for women with message boards and chat rooms.

CONTACT

For additional information, contact the Women and Epilepsy Initiative of the Epilepsy Foundation at (800) 332-4050.

REFERENCES

Callanan M, Cramer J, Shafer PO. Understanding compliance and areas for intervention. In: Santilli N, ed. Managing Seizure Disorders. Philadelphia: Lippincott-Raven Publishers; 1996:135-144.

Morrell MJ, Sarto GE, Shafer PO, et al. Health issues for women with epilepsy: a descriptive survey to assess knowledge and awareness among health care providers. J Women’s Health Gend Based Med. 2000; 9:959-965.

Shafer PO. Counseling women with epilepsy. Epilepsia. 1998;39 (Suppl.8):S38-S44.

Shafer PO. Epilepsy and Seizures: advances in seizure assessment, treatment, and self-management. Nursing Clinics of North America. 1999; 34(3):743-759.

Shope JT. Educating patients and families to manage a seizure disorder successfully. In: Santilli N, ed. Managing Seizure Disorders. Philadelphia: Lippincott-Raven Publishers; 1996:123-134.