Although it is uncommon for mental health programs to be segregated by gender, many women insist on being treated separately from men and by clinicians who understand and specialize in women's issues. Many women with schizophrenia appear to benefit from gender-focused management (1), even though schizophrenia is not generally thought of as a "woman's disease."
This paper describes a clinic for schizophrenia that provides specialized services for women (2). Services include a comprehensive patient and family assessment, subsequent recommendations to the treating clinician, and short-term treatment options tailored to the needs of women.
The clinic was established in 1995 at the Clarke Institute of Psychiatry in Toronto. Although some women are referred to the clinic for a one-time consultation, many return or remain to take part in a comprehensive program that includes individual counseling, pharmacotherapy, case management, parenting groups, women's groups, and cognitive-behavioral interventions. The patients also have access to the institute's many services for patients with schizophrenia, such as programs for those experiencing an initial episode of psychosis, family programs, psychoeducation, leisure groups, work-readiness programs, and stress reduction groups. Approximately 250 women have been assessed since the clinic began. Treatment lasts between six months and one year, and about 65 women are in treatment at any given time.
The program staff consists of two psychiatrists and a fluctuating number of psychiatric residents and fellows. The psychiatric residents stay for six months, and the fellows, many of whom come from other countries, stay for a year or two. They and other student members of the staff bring with them first-hand understanding of the ethnic diversity reflected in the patient population. Other staff include two permanent nurses, a social worker (the only full-time male staff member), and an occupational therapist. In addition, the clinic has access to the occupational therapy, psychology, recreational therapy, and case management staff of the day center operated by Clarke Institute's schizophrenia division. The day center is a program for both men and women, where patients are treated in individually tailored therapeutic groups.
Many of the clinic's patients are women who have exhibited psychotic symptoms and are referred by their treating physicians for an accurate diagnosis (3). Treating physicians frequently seek management suggestions for psychotic symptoms, especially if the symptoms fluctuate with menstrual phases or at menopause. Many referrals come from child protective services and other child welfare agencies and are related to parenting capacity and custody disputes. Some women are referred by their treating psychiatrists for advice about social issues, such as multiple role conflict, abusive relationships, special housing needs, refugee or new-immigrant status, and substance abuse.
Several women have referred themselves because they were planning a pregnancy, and some because they were already pregnant and undecided about what to do. Some have come believing they were pregnant when they were not. Others have been referred when they denied that the child they had given birth to was theirs. Families have come for genetic counseling before adopting a child whose biological parent or parents have schizophrenia. Health issues, including side effects of antipsychotic medications, prompt many referrals.
Establishing a diagnosis of schizophrenia for a woman is often difficult because of the late onset of the illness for many women (4) and because many women with schizophrenia display prominent affective symptoms instead of negative symptoms (5,6). The distinctions between depressive disorders with psychotic features, delusional disorders, personality disorders with brief psychotic episodes, comorbid conditions such as thyroid disease, and schizoaffective psychoses are much more subtle among women than among men (7). For clinic patients the diagnosis is clarified over time, a process which is helped by observing how the patient responds to treatment.
Motherhood and schizophrenia
If the patient is pregnant and near to term, neuroleptic medications are tapered during the two weeks before delivery. The clinic staff work to ensure an adequate hospital stay. Medications are resumed immediately after childbirth and monitored every two weeks. The safety of breast-feeding for the infant while the mother is receiving neuroleptic medications is monitored by the clinic's child care nurse.
Many women who are served by the clinic are single parents living in poverty. Their accommodations are unsafe for small children, and their ability to buy food, clothes, and children's necessities is limited. They often have no one to whom they can entrust the occasional care of their child, especially when their own health is compromised. They are frequently alienated from parents or other family members. When the children become ill, they have no one to turn to. The mothers feel relatively uncomfortable outside their home, and many stay sequestered in quarters that are too small. The children become restless, bored, demanding, and unhappy (8), an overwhelming management task for a preoccupied and tired mother.
Women with schizophrenia are at risk of oversedation from medication, which leaves them little energy for parenting. Most of the women served by the clinic are heavy users of tobacco and alcohol, and, despite their best resolve, much of their money goes to support these habits.
Pervasive in the minds of these women is the specter of being judged unfit by child protective services and the court. They report being afraid that their schizophrenia will make them appear unfit and that their children will be taken away. Their fear makes them incapable of asking child welfare or other agencies for help or even admitting to their friends, relatives, or care providers that they are having trouble. Because acknowledgment of illness is risky, some mothers deny illness and stop attending clinic programs. For such women, the clinic has adopted an active outreach approach, sending workers into the home.
The new mother has many needs that the clinic program cannot fulfil. Clinic staff put the mother in touch with agencies that provide baby clothes and other items. As the baby begins to crawl and walk, the new mother also needs instructions about "baby-proofing" her home. She requires instruction on the baby's health needs and what to do in case of accidents. The clinic provides such instruction through the woman's case manager and also through workers from child welfare agencies and volunteer organizations.
The clinic has also established links with agencies and facilities to help provide integrated services, such as leisure activities, fitness programs, and mother-baby activities at libraries and drop-in centers. Craft projects, swimming lessons, and singing and dancing activities for mothers and children are encouraged. As babies grow, the mother is given instructions about nutrition both for herself and for her child. The clinic ensures that the mother has a regular pediatrician.
Because it is difficult to attend the clinic with an infant, the clinic provides psychiatric care and instruction in child care at home to the mother for the first six months of her child's life through her case manager and a psychiatric resident on the clinic staff. The mother is encouraged to return to clinic-based activities as soon as possible after the first six months. One of the clinic services is a weekly parents' group at which parenting strategies are shared and discussed (2).
Clinic staff maintain close liaisons with family members and others, including former partners or husbands, child welfare workers, other health professionals, lawyers, and school teachers. All women who attend the clinic, whether or not they are mothers, also have access to substance abuse counseling and sex education, as well as relationship-focused groups (2).
When possible, clinic staff provide help to the children themselves and attempt to extend and improve the mothers' network of friends and helpers. Staff arrange full-time help at home for the new mother through child welfare agencies. Staff also involve the children's grandparents and other relatives when appropriate (9,10). Some children are referred for medical and psychological assessments to the Clarke Institute's children's service.
The clinic's general philosophy is that it is in children's best interests to live with their mother or spend as much time as possible with her, as long as the mother's symptoms are not dangerous to the children and many extra supports are built into service provision (10).
The treatment of women with schizophrenia presents some specific issues not encountered in the treatment of men (11), such as the meaning of menstrual periods. Like any other bodily function, menstruation may assume special meaning for women with psychosis, and they may interpret the absence of menstruation, which is often a side effect of neuroleptic drugs, in delusional ways.
Hormone replacement therapy is advised for selected menopausal women with schizophrenia. Some evidence has been found that it may help control psychotic symptoms. It also preserves bones, protects the cardiovascular system, and enhances memory (12,13,14). The women's clinic is involved in a multicenter research study to determine the effect of hormone replacement therapy on symptoms and cognition in postmenopausal women with schizophrenia.
Like all women, those with schizophrenia are at increased risk for depression (15). Women with schizophrenia experience many affective symptoms and are vulnerable to suicidal feelings. The addition of antidepressants to a therapeutic regimen may be necessary but may also make treatment more complex (16). All antidepressants can be combined with neuroleptics at their usual effective dosage, but side effects common to both, such as sedation and hypotension, are additive. Dosages should be increased more gradually than usual.
The use of selective serotonin reuptake inhibitors may increase the blood level of neuroleptics, resulting in more adverse effects. On the other hand, mood stabilizers like carbamazapine can lower the availability of neuroleptics to the brain by 50 percent. Some patients experience episodes of confusion resulting from a combination of lithium and neuroleptics, and their concomitant use has been implicated as a risk factor for neuroleptic malignant syndrome.
The clinic has received many requests for help in switching patients from older neuroleptics to clozapine or olanzapine because, in contrast to the older antipsychotics, these newer drugs cause only minor, transient elevations of prolactin (17). Thus they do not interfere with the hypothalamic-pituitary-ovarian axis and do not suppress the ovarian secretion of estrogen. Most, though not all, women prefer to have regular menses. In addition, women are more vulnerable than men to agranulocytosis, which is a risk in clozapine treatment (18), and they must be closely monitored. For women, any changes from the older neuroleptics, and especially from depot drugs, must be gradual because of the continued release of the old drug from lipid stores, which is proportionally greater in women than in men, long after drug discontinuation (19).
Certain side effects of antipsychotic medications have proven to be of greater concern for women than for men. Weight gain is a primary example and strongly influences treatment adherence. Therapists must work closely with patients to ensure a daily routine involving exercise, a balanced diet, and regular medication intake. Therapists should also ask about breast engorgement, galactorrhea, and libido.
The effectiveness of psychosocial treatments depends on how well a person was before getting ill. The majority of women who develop schizophrenia function better than men (3,5) and respond better to psychosocial interventions. A study of the effectiveness of family therapy provided during acute illness demonstrated perceptibly greater improvement in women (20). The dilemma for service provision is that early in the course of illness, women seem not to need psychosocial interventions to the same extent as men.
A variety of therapists are available to women at the clinic for different therapeutic interventions—psychiatric, medical, occupational, and social. It has been said that patients who suffer from psychosis do not develop close attachments to their clinicians and that the impact of changing therapists is not very significant. This is not true, and it is especially not true for women, who characteristically form very warm relationships with their health care providers and are exquisitely sensitive to changes. Some patients prefer working directly with women therapists. Staff members are sensitive to their preference and can easily accommodate it. One current intervention being evaluated in the clinic is symptom-targeted cognitive-behavioral therapy (21).
A goal of clinic staff is to help women stay connected to a social network. Interventions that promote this goal, such as activity groups, social groups, and relationship groups, are accompanied by instructional courses in sex education and contraception and in self-protection in the urban environment, because engaging in certain social activities may put women at risk for sexual victimization, acquisition of sexually transmitted diseases, and unplanned and unwanted pregnancies (22,23).
Health issues that preferentially affect women, such as gynecological and breast disease, thyroid disease, osteoporosis, and arthritis, are important clinic targets. Every woman is linked to a family practitioner, and clinic staff pay special attention to the potential effects of psychiatric drugs, such as sedation and hypotension, on special vulnerabilities like hip fractures in osteoporotic women. Of equal concern are the effects of thyroid and arthritis drugs on mood and cognition (24).
For many women with chronic mental illness, preventive gynecological measures are not taken (25). The clinic refers members who are of menopausal age to a gynecologist for an assessment, blood work, pelvic ultrasound examination, and mammography.
The clinic maintains an active liaison with a neighboring facility for outpatient drug and alcohol treatment. Among persons with schizophrenia, twice as many males as females have alcohol use disorders, but the women who do fall into this category are more likely to report comorbid depression (26,27,28). Although women drink less alcohol than men and generally begin drinking later in life than men, they progress more quickly from the onset of drinking to the later stages of alcoholism. More stigma is attached to women drinkers, and the social consequences for women are especially felt in their family life.
Data on a cross-section of the women referred to the clinic suggest that the illness is mild during the first decade after onset but worsens in subsequent years. This worsening is evident in the number and frequency of hospital admissions and lengths of stay and also in symptom scores, social adaptation, and occupational status.
It is not uncommon for psychosis to arise for the first time in women at the approximate time of menopause (29). Many psychosocial events combine to make the menopausal years a stressful time for some women. Spouses may become ill, children may be leaving home, hitherto protective parents may have died, and general health may be failing. Lower levels of estrogens may contribute to the problem (14).
Mortality among persons with schizophrenia is known to be higher than in the general population, with suicide being a major contributing factor (30). Suicide is not related to the severity of illness per se but to other factors, notably depression. Contrary to expectations, most studies have found that compared with women in the general population matched for age, women with schizophrenia are at higher risk for suicide than men with schizophrenia. For instance, a follow-up study of 10,000 patients with first-episode schizophrenia in Denmark (31) found the relative risk of suicide for women to be higher than that for men until age 60. The risk for both sexes was particularly increased in the year after the first hospital admission. An important aspect of the clinic's services is to monitor depression and suicidality and to provide active and immediate outreach at times of crisis.
Aging and the progress of schizophrenia occur side by side, making it impossible to disentangle the effects of age from the progress of disease. Existing evidence suggests that aging is beneficial to those with schizophrenia: a 37-year follow-up study in Switzerland showed that positive symptoms were considerably less severe in old age or had disappeared altogether in more than two-thirds of patients over age 65 (32). Negative symptoms tended to persist. Total outcome was judged to be favorable in half the cases followed. Some form of cognitive deterioration occurred in about a quarter of the patients, which is similar to or only slightly higher than its occurrence in the general population over age 65. The quality of relationships tended to improve in old age, although the number of social contacts decreased and dependence on others was evident in two-thirds of cases (32). The clinic has not yet had any referrals of women over age 65, but it maintains close links to geriatric psychiatry services and provides consultations when needed.Favorable outcome in old age in the Swiss study was correlated with good premorbid social adjustment and less disturbed premorbid personality; however, no correlation with gender was found (32). Because it is generally agreed that women have better premorbid adjustment than men (3,4,5), biological and psychosocial stressors particular to adult women must take a toll in later years. Studying women with schizophrenia over time—from adolescence to old age—should provide clues to the evolution of illness. Understanding differences between men and women will help clarify the various risk factors that play a part in causation and will lead to both earlier and more effective intervention.
The authors are grateful to the endowment of the Tapscott Chair in Schizophrenia Studies at University of Toronto.
The authors are affiliated with the Clarke Institute of Psychiatry at the University of Toronto, 250 College Street, Toronto, Ontario M5T IR8 (e-mail, firstname.lastname@example.org). This paper is one of several in this issue focused on women and chronic mental illness.