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Providing quality reproductive health services to people with mental disabilities --
including psychiatric disturbances or retardation -- requires careful attention to several
factors: the nature of the disability, the setting in which the person lives, their level
of function, and their ability to understand the consequences of contraceptive decisions.
Providers also need to keep in mind such issues as the level of sexual activity of
mentally disabled clients; whether they are at risk for sexual abuse; whether pregnancy
can exacerbate a mental disturbance; whether clients can be appropriately counseled and
can comply with various contraceptive regimens; and, if permanent contraception is being
considered, whether clients are capable of fully understanding and freely consenting to
it.
Psychiatric disabilities
Issues associated with the provision of various contraceptive methods for people with
psychiatric disabilities include the following:
Combined oral contraceptives (OCs) -- These can be effective contraceptives for
institutionalized patients who are accustomed to long-term treatment and are likely to
take pills reliably. OCs may not be suitable for outpatients, homeless women, or drug
abusers who are unlikely to comply with a daily pill regimen.
How the hormonal components of OCs could affect the mental disturbance or interact with
drug therapy must be considered. Research results are conflicting, but there is some
evidence that OCs can cause depression in rare cases.1 Thus,
OCs are not recommended for patients already suffering from severe depression. There is
some evidence, however, that estrogen in OCs may benefit schizophrenic women by reducing
psychotic symptoms (such as hallucinations or delusions) or increasing the effectiveness
of treatment.2
Since OCs increase concentrations of diazepam and certain other benzodiazepines in the
blood, their use in women taking these mild tranquilizers may not be recommended. Yet,
since phenothiazines or tricyclic antidepressants may lower levels of estrogen or
progesterone, OCs can be beneficial for women taking these drugs, reversing the effects of
estrogen deficiency (osteoporosis, vaginal dryness or dyslipidemia) or progestin
deficiency (endometrial hyperplasia).3 Finally, providers
should keep in mind that antiseizure medications like phenytoin, carbamazepine and
phenobarbital may speed up contraceptive steroid metabolism, increasing the risk of
contraceptive failure.
Progestin-only methods -- Progestin-only contraceptives can cause irregular
vaginal bleeding, which may concern some mentally disturbed women who interpret this as a
sign of ill health. "Many mentally disturbed women express a real fear of their
menstrual blood, and become very nervous when they bleed," says Lucy Wong-Hernandez,
executive director of Winnipeg, Canada-based Disabled Peoples International (DPI).
"They often feel dirty and embarrassed. In so many parts of the world where simple
menstrual hygiene products are not available and these women fear their bleeding would be
obvious to others, they tend to hide in shame until the bleeding has stopped."
Such methods as Norplant, a progestin-only implant, and progestin-only injectables
offer the advantage of not requiring user compliance. Although evidence that progestins
can cause mood disorders is limited,4 long-term progestin
methods -- which cannot be easily removed or stopped -- should be used with caution.
Intrauterine devices (IUDs) -- While providing effective contraception without
requiring patient compliance, these devices are not recommended for women who have
multiple partners or whose partner is at high risk of having a sexually transmitted
disease (STD), since the woman would be at high risk for infection. IUD use in a woman
with an STD increases her risk of pelvic inflammatory disease, which can result in
infertility, chronic abdominal pain, and such life-threatening complications as ectopic
pregnancy or pelvic abscess.
Barrier methods -- Condoms should be promoted and made available whenever
possible to protect against STDs. While institutionalized patients would seem to be at
lower risk of acquiring an STD, sexual activity among some mentally ill people --
including those in institutions -- is typically greater than in the general population.5
Pregnancy concerns
Pregnancy causes profound physical and psychological changes that, some studies
suggest, may exacerbate a mental disturbance.6
Studies in industrialized countries have suggested that women with a history of mental
disorder are at an increased risk of postpartum psychiatric disturbances, particularly
depression. Similar results have been obtained in the United Arab Emirates.7
Men, as well, can suffer depressive symptoms after the birth of a child.8
In both developing and developed regions of the world, depression is women's leading cause
of "disease burden," that is, years of life lost to premature death and years
lived with a disability.9
The newborns of men or women who suffer from untreated mental disturbances may be at
risk for a number of reasons. Such parents may have difficulty meeting the daily needs of
their children, or emotionally nurturing them. Furthermore, maternal depression has been
associated with subsequent behavior or sleep disorders in the women's infants and
children,10 perhaps due to a prenatal exposure to a
biochemical imbalance in their mothers.
Women with schizophrenia have high rates of unintended pregnancy and obstetric
complications, and are especially vulnerable to exacerbations of their disease during the
postpartum period. Such women often lose custody of their children; but those who do not
may have trouble responding to their children's needs.11
Women with mental disturbances may also be more likely to abuse alcohol or other drugs
during pregnancy, harming their fetuses. Finally, psychiatric medications to treat mental
disturbances can have harmful effects on fetal development. Although the benefits of use
during pregnancy may outweigh risks, lithium for the treatment of bipolar disorder, for
example, can cross the placental barrier and cause teratogenic effects and toxicity.12
Despite these risks, the reproductive health consequences of psychiatric disorders are
commonly overlooked for two primary reasons.
First, psychiatric disorders -- such as depression -- may not be recognized. "In
some cultures, where many womens' first priority is the well-being of their husbands and
children, a woman may be reluctant to recognize her own emotional needs unless they begin
to interfere with her ability to care for her family," says Dr. Cindy Waszak, an FHI
research scientist who has studied women's reproductive health issues in Egypt, Vietnam
and Kenya. "She may be hesitant or unable to describe the degree to which she feels
depressed. Her mental distress, instead, may manifest itself in the form of puzzling
physical symptoms, such as dizziness or fatigue."
"In the developing world, women with various psychiatric disabilities are seldom
diagnosed, or even evaluated," agrees Wong-Hernandez of DPI, which has offices in
eight countries worldwide. "Often such women experience conflicts with family members
and are thrown out of the household to become peddlers or beggars. No one brings them to a
clinic for an evaluation."
In Jamaica, says Ransford Wright, executive secretary of the Jamaica Council for the
Disabled, the National Family Planning Board seeks to make contraception available to
everyone, including the disabled. "In general, people with either mental or physical
disabilities are sensitized and aware of their sexuality and reproductive health
needs," he says. "Health aides go door-to-door trying to serve everybody.
However, there are pockets of problems, including people with psychiatric disabilities
living on the streets."
Even when a psychiatric disability is diagnosed, health care providers often do not
recognize that the patient may be sexually active, in need of contraception, and capable
of managing contraceptive use, either to protect against STDs or to prevent pregnancy.
In a U.S. study, about half of 178 psychiatric patients with severe mental illness
reported being sexually active within the previous six months; yet, over half of the
active participants had never used condoms. Of those sexually active patients for whom
data were available, nearly half had multiple sex partners, about a third used drugs
during sex, and about a third traded sex for drugs, money or other goods.13
Men with chronic mental disturbances who were seen at an outpatient psychiatry clinic
in the U.S. were at significant risk of fathering unintended children and acquiring
sexually transmitted diseases. Most of the 35 patients studied had fathered children, but
60 percent of the children younger than 16 were not being reared by their biological
father. Forty-one percent of the patients who had sexual intercourse during the preceding
year and had not wanted children reported that they or their sexual partner had not used
contraception at the time of last intercourse.14 A New
Zealand study of 92 male psychiatric outpatients and 92 men without psychiatric problems
produced similar findings: a third of psychiatric patients who did not want to father
children reported that contraception had not been used during last intercourse (similar to
lack of use among normal men), and patients were significantly more likely to have given
up children younger than 16 years old for others to raise than were men without
psychiatric problems.15
When possible, providers should allow individuals with mental handicaps to manage their
sexual lives, including decisions about having children. This can be complicated and
time-consuming. Often, providing contraceptive information is not enough.
Women who are depressed, anxious or suffering from thought disorganization may be
unable to use some contraceptive methods reliably, such as OCs or condoms. Difficulties
arise when attempting to provide contraception to homeless, mentally disturbed women. Such
women tend to abuse drugs and be at high risk for sexually transmitted diseases, giving
their reproductive health low priority as they struggle to survive on the street. They
rarely tend to seek medical attention, may suffer discrimination when they go to a clinic,
lack negotiation skills to get their partners to use condoms, and are difficult to serve.
Mental retardation
Men and women who are profoundly mentally disabled are rarely sexually active. However,
most people with mild intellectual disabilities are as interested in having sexual
relationships as members of the general population. Furthermore, their fertility generally
is not compromised.16
The need to offer contraception to women with mild intellectual disabilities is
particularly great because they may be at increased risk for sexual abuse.17
In addition, counseling and assertiveness training to help such women avoid abusive
situations is needed.
Contraceptive counseling for mentally disabled individuals is most effective when it is
adapted to the person's unique situation, repeated over time with patience and
understanding, and consists of concrete educational material. Follow-up, involvement of
sexual partners, and awareness of contraceptive needs by mental health agency staff can
improve compliance.18
Issues associated with the provision of various contraceptive methods to persons with
intellectual disabilities include the following:
Oral contraceptives -- Disadvantages of OC use include the fact that many
intellectually handicapped people are unable to swallow pills. Also, OC use must be
closely supervised, and interaction with other medications must be evaluated. However,
this method is often used successfully and offers the advantage of decreasing menstrual
flow in women who may have difficulties with menstrual hygiene.
Injectables -- Long-term use of progestin-only injectables often causes
amenorrhea, which may be an advantage in terms of menstrual hygiene. Monthly injectables
combining an estrogen with progestin create more regular menstrual cycles. Either of these
types of injectables may be appropriate, depending upon the unique needs and desires of
the woman. U.S. researchers who established a model clinic to address reproductive health
concerns of 37 mentally handicapped women found that even normally-occurring menses could
create severe hygiene problems. However, five of the women viewed their monthly menstrual
cycles as a desired sign of normalcy.19
IUDs -- IUDs are usually not recommended for intellectually disabled people who
may be unable to report painful or uncomfortable medical complications, should they occur.
Barrier methods -- Unless intellectually disabled patients have a high degree of
initiative, understanding and manual dexterity, use of these devices is usually
unreliable.
Sterilization -- No one should be sterilized without their full understanding
and consent. Most mentally retarded men and women can understand the meaning of
sterilization and, if sterilized against their wishes, may suffer serious psychological
consequences. For this population, gynecological surgery, in itself, entails medical
risks, including aspiration pneumonia and increased infection rates due to underlying
disorders.20
A study conducted in India of 60 severely retarded patients having difficulties
managing menstruation demonstrated that vaginal hysterectomy improved the quality of life
for the women and their families in terms of achieving menstrual hygiene. "While
developed countries can afford the luxury of providing special reproductive services for
these women, these services are unavailable in developing countries like India," the
authors noted. Because of the severity of the retardation, consents to perform
the hysterectomies were obtained from parents.21
The degree to which people with mental disabilities can regulate their sexuality
largely depends upon the nature and extent of their disability, treatment, and the setting
in which they live. However, reproductive health services provided to women or men with
psychiatric disabilities or retardation should never be coercive.
Particularly in the case of long-term or permanent contraception (implants, IUDs or
sterilization), providers should be aware of legal requirements for obtaining informed
consent, including an explanation of benefits and risks, options, and a determination of
whether the patient is competent to understand the information.
-- Kim Best
References
- Slap GB. Oral contraceptives and depression: impact, prevalence and
cause. J Adolesc Health Care 1981;2(1):53-64.
- Kulkarni J, de Castella A, Smith D, et al. A clinical trial of the
effects of estrogen in acutely psychotic women. Schizophr Res 1996;20(3):247-52.
- Hankoff LD, Darney PD. Contraceptive choices for behaviorally disordered
women. Am J Obstet Gynecol 1993;168(6, Part 2):1986-89.
- Wagner KD, Berenson AB. Norplant-associated major depression and panic
disorder. J Clin Psychiatry 1994;55(11):478-80; Wagner KD. Major depression and
anxiety disorders associated with Norplant. J Clin Psychiatry 1996;57(4): 152-57.
- Abernethy V. Sexual knowledge, attitudes, and practices of young female
psychiatric patients. Arch Gen Psychiatry 1974;30(2):180-82; Abraham SF, Bendit N,
Mason C, et al. The psychosexual histories of young women with bulimia. Aust NZ J
Psychiatry 1985;19(1):72-76; Akhtar S, Crocker E, Dickey, et al. Overt sexual behavior
among psychiatric inpatients. Dis Nerv Syst 1977;38(5):359-61.
- Llewellyn AM, Stowe ZN, Nemeroff CB. Depression during pregnancy and the
puerperium. J Clin Psychiatry 1997;58(Suppl 15):26-32; Williams KE, Koran LM.
Obsessive- compulsive disorder in pregnancy, the puerperium, and the premenstruum. J
Clin Psychiatry 1997;58(7):330-34; Leibenlueft E. Issues in the treatment of women
with bipolar illness. J Clin Psychiatry 1997;58(Suppl 15):5-11.
- Ghubash R, Abou-Saleh MT. Postpartum psychiatric illness in Arab
culture: prevalence and psychosocial correlates. Br J Psychiatry 1997;171:65-68.
- Deater-Deckard K, Pickering K, Dunn JF, et al. Family structure and
depressive symptoms in men preceding and following the birth of a child, the Avon
longitudinal study of pregnancy and childhood study team. Am J Psychiatry 1998;155(6):818-23.
- Murray CJL, Lopez AD, eds. Summary: The Global Burden of Disease.
Geneva: World Health Organization and World Bank, 1996.
- Field T. Maternal depression effects on infants and early
interventions. Prev Med 1998;27(2):200-3; Armstrong KL, O'Donnell H, McCallum R, et
al. Childhood sleep problems: associations with prenatal factors and maternal
distress/depression. J Paediatr Child Health 1998;34(3):263-66.
- Miller LJ. Sexuality, reproduction, and family planning in women with
schizophrenia. Schizophr Bull 1997;23(4):623-35.
- Flaherty B, Krenzelok EP. Neonatal lithium toxicity as a result of
maternal toxicity. Vet Hum Toxicol 1997;39(2):92-93; Schou M. Treating recurrent
affective disorders during and after pregnancy. What can be taken safely? Drug Saf 1998;18(2):143-52.
- McKinnon K, Cournos F, Sugden R, et al. The relative contributions of
psychiatric symptoms and AIDS knowledge to HIV risk behaviors among people with severe
mental illness. J Clin Psychiatry 1996;57(11):506-13.
- Coverdale JH, Schotte D, Ruiz P, et al. Family planning needs of male
chronic mental patients in the general hospital psychiatric clinic. Gen Hosp Psychiatry
1994;16(1):38-41.
- Coverdale JH, Turbott SH. Family planning outcomes of male chronically
ill psychiatric outpatients. Psychiatr Serv 1997;48(9):1199-200.
- Leavesley G, Porter J. Sexuality, fertility and contraception in
disability. Contraception 1982;26(4):417-41.
- McCormack B. Sexual abuse and learning disabilities. BMJ 1991;303(6795):143-44.
- Leavesley.
- Elkins TE, Gafford LS, Wilks CS, et al. A model clinic approach to the
reproductive health concerns of the mentally handicapped. Obstet Gynecol 1986;68(2):185-88.
- McNeeley SG, Elkins TE. Gynecologic surgery and surgical morbidity in
mentally handicapped women. Obstet Gynecol 1989;74(2): 155-58.
- Sheth S, Malpani A. Vaginal hysterectomy for the management of
menstruation in mentally retarded women. Int J Gynaecol Obstet 1991;35(4):319-21.
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