Department of Nursing, Comprehensive Epilepsy Center, Beth Israel Deaconess Medical Center, ..... learn to dial 911 for emergency assistance or to call a.
Epilepsia, 39(Suppl. 8):S38-S44, 1998 Lippincolt Williams & Wilkins, Philadelphia 0 International League Against Epilepsy
Counseling Women with Epilepsy Patricia 0. Shafer Department of Nursing, Comprehensive Epilepsy Center, Beth Israel Deaconess Medical Center, Boston, Massachusetts, U.S.A.
sive answers about relevant issues. Four broad areas that should be covered in counseling women with epilepsy include access to care, unique health needs of women with epilepsy, personal care and safety, and social and community relationships. These are described here in more detail. Key Words: Epilepsy-
Summary: All persons with epilepsy have a right to timely,
accurate, culturally sensitive information that will help them manage their seizures and their lives successfully. The goals of counseling are to provide guidance for women with epilepsy in making informed choices, to promote self-management practices that will decrease health risks, and to provide comprehen-
Women-Counseling-Self-management-Education.
“The single most important institutional factor that has the greatest impact on health behaviors is communication. . . -Gochman DS (4)
getting their various physicians to communicate with each other. Counseling is a crucial component of care for women with epilepsy. In this era of shortened visits and reimbursement restrictions, time and attention to counseling are limited. Health-care providers need to overcome these barriers as well as the social and cultural barriers that may inhibit people from discussing issues relating to sexuality, reproduction, and other “women’s concerns.” This article addresses the goals of counseling and how to assess a patient’s level of understanding and readiness to learn. It explores some of the major concerns of women with epilepsy and provides an overview of key topics that should be addressed during counseling.
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Women’s concerns about seizures and treatment are not sufficiently recognized or addressed. In addition to health and medical issues, women with epilepsy may suffer from discrimination and psychosocial difficulties, problems that are often not validated by their health-care professionals. Women with epilessy may not even recognize all of the specific ways in which the disorder affects their lives, their health, and their families, at least in part, because many of these women have been poorly informed or misinformed about the effects of the disorder. We are only just beginning to understand the needs and concerns of these women. In an informal assessment of the needs of women with epilepsy, the Epilepsy Foundation found that 61% of female respondents cited inadequate research and information about women and seizure disorders as a major concern (1). In a subsequent phone survey, 46% of 245 adult female callers to Epilepsy Foundation affiliates revealed that they do not feel their concerns are being taken seriously by their doctors (unpublished data, Epilepsy Foundation’s Women and Epilepsy Initiative, Affiliate Survey, 1996). Women frequently report lack of access to caring professionals who are knowledgeable about women’s health concerns in epilepsy, and difficulties in
WHAT IS COUNSELING? Most people associate counseling with professional guidance using psychological methods. However, other types of less formal counseling are more common. Physicians, who may not perceive themselves as counselors, actually counsel patients every day by giving advice in person, over the phone, or during formal consultations. Moreover, although physicians often do not see themselves as the primary educators of patients, patients are more likely to perceive physicians as the credible authority regarding epilepsy and its management (2). Other people who provide health education on epilepsy are nurses, social workers, pharmacists, and other professionals.
Address correspondence and reprint requests to P. 0. Shafer, R.N., M.N., at Beth Israel Deaconess Medical Center-East, Comprehensive Epilepsy Center, KS-476, 330 Brookline Ave., Boston, MA 022155491, U.S.A.
Goals of counseling The main goals of counseling are to provide guidance for women with epilepsy to make informed choices afS38
COUNSELING WOMEN WITH EPILEPSY fecting their health and quality of life and to enhance self-management practices that will decrease health risks. Counseling should strive to provide comprehensive answers about women’s health, epilepsy and seizures, and quality of life concerns for both women with epilepsy and those who care for and about them. Self-management is a process or “the sum total of steps a person takes to control seizures and manage the effects of the epilepsy on their daily life” (3). The major components of self-management education should include information, skills-building, and support [unpublished data on file at the Centers for Disease Control and Prevention (CDC), Santilli N, Shafer PO. Final report to the CDC: Health Education and Epilepsy SelfManagement Summit. October 19961. Counseling is an avenue for the provider to assess the woman’s needs, establish rapport and communication, and begin providing the information that will help her manage her seizures and her life. Communication is crucial to the self-management process and to effective counseling. In an extensive review of health behavior research, Gochman (4) demonstrates effective provider communication reduces patient anxiety; increases satisfaction with care, likelihood of remaining in care, and appropriate care-seeking behaviors; and improves patient understanding of and adherence to treatment. His review also finds simple provider initiatives can increase the likelihood patients will participate in preventive screening programs. For example, taking the time during a routine clinic visit to offer specific information on teratogenicity of antiepileptic drugs (AEDs) may encourage a woman-to take folic acid supplementation before pregnancy.
Assessment of readiness and understanding Counseling must be targeted to a patient’s readiness and level of understanding. A number of factors affect a patient’s ability to learn. These include age and developmental level, characteristics and severity of seizures, cognitive function, emotional adjustment and mood, and fears and stigma associated with epilepsy. The counselor should bear in mind chronologic age is not always predictive of developmental level. Moreover, medications can affect mood or cognitive function. The type and location of the seizure may also influence learning style and direct the focus of the discussion. For example, the discussion might focus on sexuality, fertility, and reproductive/endocrine function for a woman with limbic seizures, whereas a woman with uncontrolled generalized tonic-clonic seizures may require more counseling on safety during pregnancy. Altered mood states associated with seizure medications or concomitant psychiatric disorders can affect the ability to learn, communicate, and follow instructions. Counselors should also consider women may have fears of being stigmatized or discrimi-
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nated against, not only for having epilepsy but for being women with epilepsy. Unfortunately, it is still not wellaccepted in our society that women with epilepsy can bear children and be capable parents. Other patient-related factors that affect the educational process include her health beliefs, social and cultural norms and values, level of self-efficacy, level of support (both social and epilepsy-specific), and her knowledge, skills, and behaviors about seizure management. With regard to the patient’s health beliefs, counselors must consider the following questions (5). What is her understanding of her own susceptibility to this disorder? How does that affect her life? Does she understand the treatment alternatives and the pros and cons of different treatment options? Cultural and societal norms play an important role because views of both women and epilepsy differ from one society to another and language barriers have an obvious effect on communication. A woman’s self-efficacy, or confidence in her ability to manage her seizures and health needs, will increase the likelihood of positive self-management practices and compliance (3,6). Although social support has long been considered integral to coping with a chronic illness, recent studies have demonstrated regimen-specific support is a better predictor of successful self-management (3,6, 7). Reminding a woman to take her seizure medications or folate supplementation, providing transportation to clinic appointments, or assisting with charting seizures in relation to menses are examples of regimen-specific supports that can be provided by family members or friends. To participate actively in the counseling discussion, the patient must first have an open avenue of communication and a solid relationship with her providers. This patient-provider relationship is important in assuring patients their concerns are being heard and they are receiving information on which to base their decisions. Once that relationship has been established, counseling should begin with a discussion of mutual goals and priorities. Some important considerations for counseling are listed in Table 1. TABLE. 1. Considerations for counseling the woman with epilepsy Be cognizant of the historical role of women in health care, women as patients, and myths about epilepsy Communicate effectively; listen actively Develop a partnership and establish mutual goals Provide information that is understandable, culturally relevant, and timely Tailor information and interventions Provide appropriate guidance or refer to a specialist Acknowledge gaps in information and research Encourage social support and epilepsy-specific support Communicate with other health-care providers Identify a care coordinator Advocate for the needs of women with epilepsy
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SELF-MANAGEMENT PRACTICES Many self-management practices or behaviors are used by people with epilepsy to help control seizures or cope with the consequences of the disorder. These may include taking AEDs as prescribed, identifying and managing adverse effects of medications, using behavioral techniques, or modifying the lifestyle or environment to minimize seizures and enhance safety (8,9). Many health-care problems unique to women with epilepsy are elucidated in the preceding articles in this supplement. The following sections highlight these and other key issues for women with epilepsy and are incorporated into four broad categories of self-management practices. These include (a) access to care, (b) unique health needs of women with epilepsy, (c) personal care and safety, and (d) social and community relationships. These are described below and summarized in Table 2.
Access to care A woman with epilepsy is faced with the challenge of locating a primary care provider who can serve as an TABLE 2. Key topics to cover in counseling women with epilepsy Access to care Finding an appropriate health-care team Establishing communication, roles, and power Developing partnerships Making informed choices Identifying health-care needs specific to women with epilepsy Relationship between seizures and menstrual cycle Effects of epilepsy on sexuality Contraception Fertility Family planning Folic acid supplementation and teratogenicity of AEDs Pregnancy Effects of pregnancy on epilepsy Effects of epilepsy on pregnancy Risks to the mother Risks to the fetus Breast-feeding Menopause Hormone replacement therapy Bone health Cosmetic effects Personal care and safety Preventing injuries and assaults; safety management Planning activities of daily living Managing stress and other seizure triggers Balancing multiple demands and roles Understanding need for regular sleep Stress management training Developing safe parenting skills Social relationships and community living Personal adjustment to epilepsy Confidence, self-esteem, and body image Social relationships, especially dating and marriage Transportation Disclosure of epilepsy to others Fear of stigma and discrimination Support networks, social and epilepsy-specific Advocacy
Epilepsia, Vol. 39, Suppl. 8, 1998
effective leader of her health-care team, coordinating her care with other clinicians, including her neurologist, obstetriciadgynecologist, pharmacist, nurse, and possibly others. This individual must be someone who is knowledgeable and unbiased about epilepsy and women’s health-care needs. Many women with epilepsy are still erroneously being advised not to have children or are being rejected by providers who simply do not want to care for them. Once a health-care team has been established, these providers must develop a system for communicating with each other and with the patient, and issues of roles and power must be addressed. Providers should explore linkages or partnerships with women’s health care centers that can assist in providing comprehensive women’s health care in a coordinated fashion.
Unique health needs of women with epilepsy It is important to keep in mind that women’s issues in epilepsy care pertain to more than just pregnancy. Women with epilepsy face a number of unique issues that begin at puberty and continue throughout the life cycle. Beginning at puberty, or even earlier, a girl must learn about her body and sexuality as well as the impact of epilepsy on related aspects of her life. She may experience a connection between seizure activity and her menstrual cycle (catamenial epilepsy). Counseling regarding catamenial epilepsy should include instruction on how to chart seizures, when to consider more detailed evaluations, and use of adjunctive medications or hormonal therapy to aid seizure control (10). Discussion about the risks of pregnancy and folic acid supplementation should not be delayed until the patient expresses an interest in conceiving but should be initiated as soon as menstruation begins. Subsequent important issues include reproductive functioning, family planning, contraception, fertilify, pregnancy, teratogenicity of AEDs, and breast-feeding. Family planning goes beyond issues of contraception to include basic issues of parenting. Pregnancy should be discussed before conception so that problems can be anticipated and possibly prevented, and so that a management plan can be coordinated. The articles by Dr. Zahn (page S26) and Dr. El-Sayed (page S 17) provide detailed descriptions of concerns and management issues for women of childbearing age. Table 3 provides a sample labor and delivery plan, which can be completed by the patient and shared with her labor and delivery team at the time of childbirth. Later in life, the woman faces issues relating to epilepsy and menopause, hormone replacement therapy (HRT), and bone health. Whether or not to use HRT, and which kind, is of concern to all women and is more complex for the woman with epilepsy. Careful consideration should be given to using estrogen alone or a
COUNSELING WOMEN WITH EPILEPSY
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TABLE 3. Labor and delivery plan Developed and provided by Pauicia Shafer, Beth Israel Deaconess Medical Center. May be
10. When labor begins. my doctor has recommended I take:
reproduced with permission.
Name: 11. When I cume to the hospital during labor, my seizure medications shouldshould not be
Attending Neurologist:
given to me as prescnbed (circle one). If I need intravenous medications, the best medica-
Epilepsy Nurse:
hon to give me is:
1. I have s e i z u r e s .
2. My typical seizures look like: 12. The following medications may aggravate my seizures:
Please avoid these if possible and consult me or my epilepsy doctor or nurse before giving these medicines.
3. The seizures occur
times per daylmonthlyear (circle one), My last seizure oc-
13 If I have a seizure, the following tips may help me through it:
curred on .4. My seizures did/did not change during my pregnancy (circle one).
While I was pregnant, I had approximately
-seizures per daylmonthlyear (circle one).
5 . I take these medications for my seizures:
14. Preferences for p a n management during labor and delivery discussed with my obstetr-
cal and neurological team include:
15. Other nun-medicine strategies that will help me with labor and delivery include:
6. I do/do not have any allergies (circle one). Memcation allergies include:
16. I may have concerns about the health of my child at delivery. I would like the follow-
ing interventions to be considered to evaluate and treat my child:
17. I doldo not plan to breast-feed my child (circle one). Breast-feeding may disrupt my 7. My prepregnancy medications and dosages were:
sleep schedule and affect my seizures. To prevent this 1 would iike information about pumping breast milk or supplementing with bottle feedings.
8. Usual triggers to my seizures include:
18. Additional questions or concerns that I have include:
9. To help prevent or stop seizures, I use the following strategies:
Thank you for your help and suppon during this very important time.
Signature
combination of estrogen and progesterone. (This is discussed further in the preceding article by Dr. El-Sayed, page S17.) Because of the risk of osteoporosis associated with aging and with the use of some AEDs, women with epilepsy must be carefully counseled on seizure first aid and general safety management to decrease the risk for falls and fractures. Medication counseling should include informing the patient about the potential for drug inter-
Date
actions with multiple medications, and strategies to aid compliance and decrease drug toxicity. Throughout her life span, a woman with epilepsy may have concerns about sexuality and the cosmetic effects of therapy. These issues are among the most commonly neglected in counseling sessions. Health-care providers should initiate communication on issues of sexuality to reassure women that it is an acceptable topic for discusEpilepsia, Vol. 39, Suppl. 8. 1998
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TABLE 4. Basic principles to guide sexual assessment Be comfortable and at ease Establish empathy Avoid personal values and biases during the interview Ensure a thorough knowledge base; this makes for a more skillful interview Ask specific rather than general questions Approach emotional or more sensitive questions gradually Progress from how information was learned, to attitudes, then to behaviors State that certain sexual behaviors are common before asking questions about them From Lief et al., ref. 11.
sion. Table 4 lists eight basic principles for sexual assessment (I 1). Women should be counseled about causes of sexual disturbance (see the article by Dr. Morrell, page S32) and about strategies to alleviate their concerns. For example, HRT or even the use of lubricants and manual stimulation may ease the problem of vaginal dryness that causes pain with sexual activity. For some women, additional counseling may be recommended to explore psychosocial factors that affect sexual function. Fear of having a seizure during coitus or of triggering sensations that mimic a seizure are not uncommon in women with epilepsy (12). Possible cosmetic effects of therapy include acne, hirsutism, altered facial features, and weight gain or loss. Women may also have concerns or embarrassment about their appearance during a seizure. With vagal nerve stimulators, there are cosmetic issues relating to the visibility of the incision. Any of these cosmetic issues can affect a woman’s self-image, self-qsteem, and social relationships.
Personal care and safety Every person with epilepsy needs information on injury prevention, and should be encouraged to develop a safety management plan (13). The plan should begin with the woman recording her seizures in relation to lifestyle factors and potential seizure triggers. She can use this information to identify high-risk periods or modifiable risk factors for seizures or injury. Each woman then needs to weigh the benefits of safety and participation in desired activities against the risks for seizures and injuries or the cost of safety precautions (14). Even some activities of daily living (ADL), such as bathing, cooking, and other home-management tasks, may be hazardous for people with frequent seizures. The majority of seizure-relatedinjuries are minor and happen at home (15). Spitz et al. (16) evaluated risk factors for seizure-related burns (n = 25) and found that 40% occurred as a result of cooking and 20% occurred in the shower. Safety tips to prevent injuries and make ADL easier can be found in the Epilepsy Foundation’s pamphlet on Safety and Seizures (17). Women should also be counseled about the risk for
assault or abuse by another person during or after a seizure. Anecdotal reports of such abuse are not uncommon, particularly for women with complex partial seizures, who may wander or be confused during or after a seizure. Women should be counseled to alert neighbors, local police, or rescue squad members about their seizures and appropriate first aid. Security systems and alarms on doors can prevent a woman from leaving from her home alone during a seizure, and emergency response systems can make it easier for a woman to call for help. Women with cognitive impairments or inability to maintain their own personal safety may need extra support and guidance from loved ones or professionals to prevent victimization. Personal care also involves managing stress and other seizure triggers. This is a particularly important problem for women who are juggling multiple demands and roles, including demands placed on them by their families, their employers, and their health. More women than ever work outside the home, even those with young children. Especially in this setting, it is common for the woman’s personal health needs to take a back seat to other competing demands. Counseling must focus on helping her identify her own needs to maintain her health. Scheduling time for herself-eg., for exercise, leisure, and sleep-needs to be part of her daily routine, even if it means employing someone to help with housework, hiring a baby-sitter, or enlisting the help of family or friends. Women with epilepsy may find stress-management techniques helpful. Stress management can be learned through individual counseling, informal groups, educational seminars, formal programs, and self-study courses. These are offered at many hospitals, health centers, and community centers, and are often listed in local newspapers. Dilorio and co-workers (18,19) offer specific examples of stress management techniques that may * be helpful for people with epilepsy. Some people, particularly those with cognitive or behavioral disturbances, would probably benefit more from facilitated group or individual stress-management counseling. Women with epilepsy who have children must also have a plan for maintaining safe parenting skills. They need to consider their own health and safety as well as that of their children. Every woman with seizures should consider her own seizure pattern, potential risks, goals, and available supports for parenting. The woman with frequent seizures involving alteration of consciousness or falls is at greater risk for injury to herself and her child than a woman with controlled seizures or only simple partial events. Women who have recently given birth should be counseled that their seizures or side effects may change in the first few months as their metabolism and hormonal state fluctuate. Close follow-up with providers to regulate medications is needed during this time.
COUNSELING WOMEN WITH EPILEPSY
Advice on safety tips should begin by thinking about what would happen to a child if the mother (or other parent) had a lapse of awareness for even a few moments. Mothers should be encouraged to get down on the floor in an attempt to view the environment through the child’s eyes. Where and what are the safety risks? All parents should childproof their houses. Additional tips for safe parenting can be found in the Epilepsy Foundation’s pamphlet on Safety and Seizures (17) or Consumer and Professional Parenting Information Sheet (20). Feeding her young child is often a concern for the mother with epilepsy. Women should be counseled to feed a baby in bed or on the floor, or to place the baby in a secure infant seat. Similarly, women should be encouraged to change diapers and clothing on the floor to minimize the risk of falling. Keeping baby supplies and toys on every level of the house decreases the need for stair climbing and is advisable for the woman with frequent seizures or unsteady gait. In addition, mothers with epilepsy should bathe children while other adults are present in the home to avoid seizure-related accidents. Playtime can be made safer by using playpens or enclosed yards. A major concern for some women with epilepsy is explaining to their children about their seizures. Although they may worry that telling young children about their seizures will frighten them, it is important for parents to recognize that facing the unknown is even more frightening for most children. Once children are told what to expect and what their role should be, most cope quite well with a parent’s seizures. Women should be counseled to explain the seizures in simple, ageappropriate words. The Epilepsy Foundation has many books that help explain seizures to children of all ages. Children should be taught how to get help for their parent during a seizure. A child as young as 4 years of age can learn to dial 911 for emergency assistance or to call a neighbor or other parent. Encouraging the family to practice “seizure drills” can ensure that everyone knows what to do and feels more comfortable and confident in their role (21). Preventing sleep deprivation or irregular sleep patterns can be particularly difficult but is all the more important for women with epilepsy who have young children. Sleep disruption is a commonly reported precipitating factor for seizures. Mothers with epilepsy should attempt to balance their own needs for regular sleep with the demands of caring for a child. A mother who is breastfeeding can limit frequent awakenings at night by pumping breast milk during the day and having her partner feed the baby during some of the nighttime feedings. Single parents can enlist the help of family or friends to sleep over periodically and help with night feedings. Alternatively, they can use daytime child-care services so that they can nap during the day. Enlisting the help of
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others for the safety of her baby and herself is most important for the woman with frequent seizures. Asking for help, however, may be the most difficult part. Counseling should include how to identify needs and risks and how to recognize the benefits of using supports (20). The mother should be encouraged to connect with other new mothers through formal groups, or informally through her neighborhood to help her realize that all mothers-not only those with epilepsy-have similar needs for support. Counseling should also emphasize that a woman’s need for regular sleep and other healthy habits, such as exercise and good nutrition, continue even as her children grow. Personal care and safety also requires maintenance of a schedule of regular follow-up visits with health-care providers, including nurses, social workers or psychologists, and physicians. Women who are already balancing multiple demands and roles may have difficulties with compliance. Patients who have trouble with compliance should be advised to post a schedule of when medications are to be taken and to use a pillbox, electronic reminder, or alarm watch. If these strategies fail, the patient should consult her physician because it may be possible to switch her to a medication with a more simplified dosing regimen. Mothers should always be cautioned to keep all medications out of the reach of children of any age.
Social and community relationships Epilepsy has a profound effect on the way a woman relates to others. Her relationships are influenced by her own adjustment to having epilepsy and by her confidence, self-esteem, and body image. Her illness will have important implications for her social relationships, particularly as she dates and considers marriage. Uncontrolled seizures can also decrease social opportunitie’s and interfere with the establishment and maintenance of good social relationships. Having epilepsy may prevent a woman from driving, which is often a major cause of social isolation. Lack of transportation can also pose a problem for parents and can inhibit community involvement, as well as the ability to complete household tasks and errands. In addition to enlisting partners and friends as drivers, women with epilepsy can make use of community van services, which are often available for the elderly and those with disabilities. These services can be found by contacting the local Town Hall, loolung in the local newspaper, or calling Elder Services or local groups for persons with disabilities. Local affiliates of the Epilepsy Foundation may be aware of transportation resources in the patient’s area. The Internet can also be a valuable tool for women with limited transportation, because a great deal of shopping can now be done via computer. Some of the major groEpilepsia, Vol. 39, Suppl. 8, 1998
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cery chains allow groceries to be ordered over the Internet and delivered directly to the home for a small fee, which may be worth the cost and time of finding alternate transportation. Although talking about her disorder and disclosing her health status may be difficult for the woman with epilepsy, it is necessary in setting up social support. She may need to discuss her condition with teachers, neighbors, her children, and her spouse. If women without epilepsy are at a disadvantage in the workplace relative to men, women with epilepsy may be at an even greater disadvantage. Handling the fear of stigma and discrimination is therefore another important issue in the counseling process. It is vital for women to feel that their voices are being heard. Therefore, counselors must encourage them to be assertive and to participate actively in all aspects of their care. Counselors should explore the woman’s confidence in managing her epilepsy and communicating with her providers because this sense of selfefficacy is an important predictor of successful selfmanagement. Referring women to their local Epilepsy Foundation affiliate for women’s support and advocacy networks will help her gain the support and advocacy skills she will need as she advocates for herself, her family, and other women with epilepsy.
CONCLUSIONS All persons with epilepsy have a right to timely, accurate, culturally sensitive information that will help them manage their seizures and their lives successfully. Women in particular must have access to this information because it affects not only them but the health and well-being of their children as well. This information exists, but the greatest challenge is getting it to the people who need it. It is important to realize that all women with epilepsy have counseling needs, including those whose seizures are well-controlled. Moreover, good counseling goes beyond merely providing information. It includes teaching skills, providing guidance in making informed choices, and providing support. The use of informational handouts (see Resources, page S45) can save time in educating the patient about important issues but is no substitute for open dialogue and two-way communication.
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