Social Interventions in the Care of Human Immunodeficiency Virus (HIV)-Infected Pregnant Women Carol Levine and Machelle Harris Allen

The incidence of infection with the human immunodeficiency virus (HIV) is increasing among women of childbearing age. Women now account for 18% of the total number of cases of the acquired immunodeficiency syndrome (AIDS), compared with 9% a decade ago. The medical care of pregnant HIV-infected women must take into account the high prevalence of substance abuse, preceded and often accompanied by significant levels of physical, emotional, and sexual trauma, and the concomitant stigmatization of these women in their families and communities. Pregnancy is often a time when women are motivated to make major positive behavioral and life-style changes. To do this, they need ongoing, multidisciplinary counseling and support, with recognition that progress may be intermittent and slow. The Special Prenatal Care Program at Bellevue Hospital is described to show the level of resource commitment that is needed as well as the nearly universal acceptance of voluntary HIV counseling and testing in these conditions. Trends in permanency planning for the children ot~HIV-infected women are described. Future research needs are outlined, including female-specific drug treatment and more effective contraceptive technology for both men and women. Copyr igh t �9 1 9 9 5 by W.B. Saunders Company

p regnancy is a time when a woman's past and present meet to influence her own future

and her baby's chances for health and well-being. For a woman infected with the human immu- nodeficiency virus (HIV), the hopes and dreams that normally accompany pregnancy are mixed with fears about transmission of the virus to her baby, and about the future care and custody of this baby and her other children as her HIV dis- ease progresses. The clinician caring for her must be concerned not only about the medical man- agement of her pregnancy and her HIV infection and reducing insofar as possible the risk of HIV transmission to her fetus, but also about the other factors in her life that may influence the course of her pregnancy and her ability to care for her infant.

Although HIV-infected women come from all social and economic strata, those with the most need for social interventions are poor, homeless, or living in inadequate housing, and with a history of substance abuse and domestic violence. Rarely is HIV the only problem, or even the most im- mediately threatening problem, in their lives. Despite their often overwhelming difficulties, many women see pregnancy as a chance to in- terrupt destructive cycles of behavior and to be- gin anew. I f they are to accomplish this, however,

they require a great deal of support and patience, because the road is often bumpy and seldom straightforward. This article describes some of the ways in which pregnant HIV-infected women can be assisted through innovative social inter- ventions. Although many of these interventions are implemented by social workers, attorneys, case managers, and other team members, the role of thepr imary physician is critical in establishing a framework in which the patient's life situation and family problems are addressed as effectively and thoroughly as her medical needs.

Epidemio logy of HIV Infect ion A m o n g W o m e n

HIV infection is spreading steadily among women of childbearing age. The Centers for Disease Control and Prevention (CDC) reported in Feb- ruary 1995 that women now account for 18.1%

From The Orphan Project: Families and Children in the HIV Ep- idemic, New York, and the Department of Obstetrics and Gynecology, Division of Maternal and Fetal Medicine, New York University Medical Center, New York, NE. Address reprint requests to Carol Levine, The Orphan Project, 121 Avenue of the Americas, 6th Floor, New York, NY 10013. Copyright �9 1995 by W.B. Saunders Company 0146-0005/95/1904-0011505.00/0

Seminars in Perinatology, Vol 19, No 4 (August), 1995: pp 323-329 323

3 2 4 Levine and Allen

of all reported acquired immune deficiency syn- drome (AIDS) cases, which now total over 440,000. This percentage is twice as high as the percentage of women among the first 100,000 reported cases of AIDS (9%). Some of this in- crease is caused by the expanded AIDS suiweil- lance case definition, introduced in 1993, which included severe immunodeficiency, pulmonary tuberculosis, recurrent pneumonia, and invasive cervical cancer, the only female-specific condition added in the expansion. The expanded case def- inition resulted in a greater increase in reported cases in 1993 among women (151%) than among men (105%). The largest increases were in two age-groups: 13 to 19 years (35% female) and 20 to 24 years (29% female). Of the cases in the 13 to 19 age-group, 22% were attributed to hetero- sexual transmission, as were 18% in the 20- to 24-year-olds. 1 Even before the expanded case definition, the percentage of cases among women in some regions was higher than the national av- erage (27% in New Jersey in 1992 and 25% in New York City currently, for example2). Since 1987, H I V / A I D S has been the leading cause of death among Afr ican-American women aged 15 to 44 years in New York State and New Jersey, and it is now the leading cause of death of all women in that age group in New York City. Af- r ican-American women (53% of the total re- por ted cases of women with AIDS in New York City) and Hispanic women (22%) are dispropor- tionately affected, s

Twenty-five states now mandate reporting of HIV infection to the CDC. At the end of 1994 68,171 cases of HIV infection had been reported among adults and adolescents and 1,159 cases of pediatric HIV infection. Approximately 22% of the adults and adolescents w e r e f e m a l e . 4

Many women with HIV infection are also mothers who are raising their children without another caregiving parent. Therefore, a large number of orphaned children must be consid- ered in an epidemiologic analysis of women and AIDS. By the year 2000, as many as 125,000 chil- dren and adolescents will have lost their mothers to AIDS in the United States. Most of these sur- viving children will not be themselves HIV-in- fected, but will be at risk for HIV infection as they become sexually active or if they inject drugs. Approximately 80% of them will be nonwhite. 5

In summary, the HIV epidemic is taking an increasing toll among women of childbearing age.

Heterosexual sex is moving ahead of drug use as a risk factor leading to HIV infection, the rates of infection among young women are steadily in- creasing, and women from ethnic and racial mi- norities are those most at risk.

The Interplay o f Medical and Social Factors

There is no "typical" pregnant woman with HIV infection. Although there may be common fea- tures based on age and risk behavior, each woman has her own unique life circumstances. The cli- nician may be presented with a wide range of case scenarios. One woman may live on the edge of society in the midst of "urban ecological col- lapse, ''6 consumed by her addiction to the point that she rejects shelter from homelessness in fa- vor o f " T h e Life" of crack pipes and sex for drugs under viaducts and bridges. Another woman may be very much integrated into society, educated, employed, and with strong family supports. This article presents some of the most challenging sit- uations and one approach currently being used by an inner-city municipal hospital to address most effectively these myriad social issues as they surface in the course of prenatal care. Because of this focus, it does not present extensive infor- mation on many issues more strictly considered clinical care. ~

Concern about HIV perinatal transmission has long been a major issue for clinicians and their patients. One of the few hopeful, although not conclusive, signs in recent years has been the re- sults of the National Institutes of Allergies and Infectious Diseases (NIAID) AIDS Clinical Trial Group (ACTG) protocol No. 076. Opened to ac- crual in 1991, this prospective, double-blinded, placebo-controlled randomized trial was designed to evaluate the effect of maternal and neonatal zidovudine (ZDV or AZT) administration on the incidence of HIV infection in infants. The women enrolled initiated ZDV treatment between 14 and 34 weeks' gestation, had no other antiretroviral treatment during the current pregnancy, had baseline CD4+ lymphocyte counts greater than 200 cells/mm 3, and had no clinical indications for maternal antepartum ZDV therapy. ZDV was administered orally in the antepartum period, intravenously in the intrapartum period, and in a syrup to the neonate for the first 6 weeks of life.

HIV-Infected Pregnant Women 32 5

By D e c e m b e r 1993, 477 w o m e n h a d b e e n en- ro l l ed , wi th c o m p l e t e da t a avai lable on 364 in- fants. Because a review o f efficacy showed such d r a m a t i c resul ts in the t r e a t e d g r o u p , the Data M o n i t o r i n g a n d Safe ty B o a r d t e r m i n a t e d the study. The es t ima ted probabi l i t i es o f t ransmiss ion b a s e d on the K a p l a n - M e i e r analysis were 8.3% for z idovudine c o m p a r e d with 25.5% for p l acebo (P = .000056) . a Based on these da ta , the New York S ta te D e p a r t m e n t o f H e a l t h A I D S In s t i t u t e r e c o m m e n d e d tha t all H I V - i n f e c t e d p r e g n a n t w o m e n b e y o n d the first t r imes te r be o f fe red ZDV d u r i n g the a n t e p a r t u m a n d i n t r a p a r t u m p e r i o d unless the m o t h e r is ZDV res is tant o r in to le ran t . 9

W i t h this b a c k g r o u n d , c o n s i d e r the fo l lowing two case scenar ios :

Case 1

S.M. is a 32-year-old, Para 4124, HIV-infected woman with cytomegalovirus (CMV) retinitis. She presented for prenatal care at 21 weeks' gestational age. Physical examination was notable for loss of vision in her left eye and healed knife wounds on her face and back inflicted by a previous boyfriend. She had a history of crack use but was not in drug treatment. Her substance abuse began with alcohol at the age of 7 after she had been raped by her stepfather. She had been in a re- lationship, reportedly violent, with her current partner for 3 years. She did not have custody of any of her previous children, who were in foster care. She had not received treatment for her HIV illness or CMV retinitis. Prenatal care was her entry point for health care. She did not take the recommended AZT. Her baby to date is HIV-negative by polymerase chain re- action (PCR).

Case 2

S.W., a 34-year-old woman, Para 5045, presented for prenatal care at 24 weeks' gestational age. Although her medical history was significant for an 8-year history of known HIV infection, she was asymptomatic and had a CD4 count of 370 cells/mm 3. She was not taking ZDV because of its side effects. She also had chronic hypertension and a seizure disorder and was noncom- pliant with prescribed medications for both conditions. Although she had a history of crack use, she was drug free at the time of enrollment for prenatal care. She was in the process of reunification with her 13-year- old son. She also wanted surgical sterilization after she delivered and had signed the appropriate consent forms. Throughout her prenatal course she complied with her appointment schedule. Although she at- tempted to take ZDV to prevent perinatal transmission,

after 1 month she discontinued it because she found the side effects of nausea and headaches insurmount- able. After two hospitalizations for blood pressure control, she became compliant with her antiseizure and antihypertensive medications. She had been in a stable relationship with her current par tner for 11 years and had moved out of the shelter system into a private home with the assistance of the New York City Division of AIDS Services. On presentation in labor with the fetus at 36 weeks' gestational age, she developed eclampsia, suffered a grand real seizure, and underwent an emergent cesarean section before reaffirmation of her tubal ligation consent could be obtained. Her baby to date is HIV-negative by PCR.

In imp lemen t ing the r e c omme nda t i ons based on the f indings o f A C T G 076, it becomes clear that what appears to be a simple task is no t so simple af ter all. In a life in which chaos is the norm, hea l th issues take a back seat to basic survival. I n the first case the psychological sequelae o f the violent events in S.M.'s life were so p r o f o u n d that even ord inary conversa t ion was difficult. H e r eyes would r ema in averted, and she spoke in a s t ream o f consciousness. She readily agreed to any r ecommenda t ion , bu t forgot it the next minute. W h e n t ranspor ta t ion was a r r anged for he r clinic appoin tments , she of ten would no t make it to h e r f ront door . I t was clear to all involved in he r care that h e r noncompl i ance was no t a ma t t e r o f conscious recalci t rance, bu t r a the r a severe inability to engage in any activity whatsoever .

I n the s e c o n d case, we e n c o u n t e r a w o m a n r e c o v e r i n g f r o m years o f add ic t ion , f inally ou t o f the she l te r system, a n d in the process o f r eun i t i ng with h e r a do l e sc e n t son, who was s t rugg l ing with his own issues o f fea r a n d r e s e n t m e n t . H e r pr i - m a r y c o n c e r n was m a n a g i n g h e r h o u s e h o l d , k e e p i n g h e r son in school a n d ou t o f t roub le , as well as c a r i ng fo r h e r t odd le r . A l t h o u g h she d id n o t en ro l l in to p r e n a t a l ca re un t i l la te in h e r p r e gna nc y , h e r a t t e m p t s at c o m p l i a n c e were im- pressive. She w o u l d s p e n d an h o u r on pub l i c t r a n s p o r t a t i o n to c o m e to the clinic, whe re she w o u l d s p e n d a n o t h e r 2 to 3 hour s , o f t en l o n g e r i f she n e e d e d b l o o d p r e s s u r e m o n i t o r i n g o r fe ta l surveil lance. In spite o f this, she m a n a g e d to keep every a p p o i n t m e n t once e n g a g e d in care. Hav ing h e r in ca re with m o d e r a t e b l o o d p re s su re con t ro l was v iewed as a m a j o r a c c o m p l i s h m e n t . The fact t ha t she d id no t c o n t i n u e tak ing h e r p r e s c r i b e d AZT was c o n s i d e r e d a c c e p t a b l e as l ong as she was at leas t in care .

326 Levine and Allen

Addiction and Trauma

A growing body of evidence exists concerning women who are addicted to drugs, especially crack. It is becoming more apparent that physical, emotional, and sexual t rauma often antedate drug abuse, and continued physical abuse is often concomitant with continued drug abuse. An as- sociation between posttraumatic stress syndrome and substance abuse has been well documented in men as well as in women. 1~ Fullilove et al I4 explain that the stigma associated with being a woman, pregnant or not, addicted to crack, and exchanging sex for drugs ("crack-ho"), adds the trauma of stigma to physical trauma. The cu- mulative impact of childhood physical, sexual, or emotional abuse and adult stigmatization results in such p ro found personal devaluation that drug treatment for women cannot begin to be suc- cessful unless it addresses a " t rauma spectrum disorder" and issues of self-worth, shame, and grief. This requires a recognition of the role of those forces outside the individual's control that influence her behavior.

A willingness to recognize addiction as a result of victimization runs contrary to those theories of drug treatment based on the male model. Standard drug treatment until now has been confrontational. Most women find this approach humiliating. Emotional vulnerability is height- ened during pregnancy. Those drug treatment modalities not effective for women in general may in fact prove to be damaging during pregnancy.

For the woman who is chemically dependent and HIV-infected, her medical needs pale in the light of her psychosocial problems. Yet invariably pregnancy holds the most crucial key for en- gagement into any service at all. It is the point for connect ion into drug treatment, as well as primary health care or psychiatric support.

The Bellevue Hospital Special Prenatal Program

It is clear that any treatment in this area needs to be multifaceted; no part can be considered without recognition of its relationship to the whole. And multifaceted care necessitates a team approach. The members of Bellevue Hospital's Special Prenatal Program in New York City, a public municipal hospital, include a nurse, a so- cial worker, a domestic violence counselor and

advocate, as well as an HIV counselor and an obstetrician. The services provided by any one person can be and often are duplicated by an- other. Whereas the social worker is responsible for the case management, the nurse can also pro- vide this service for those patients who are averse to, or for other reasons bypass, the social worker. All members of the team provide HIV counsel- ing, but one person dedicated to this work can spend more time "educating" the patient about HIV illness and transmission prevention. The HIV counselor is also a phlebotomist. This makes it possible for the woman who consents to HIV testing to have her blood drawn immediately without being sent to another part of the hospital to wait in yet another line. In addition, presenting positive results can take more time than either the social worker, nurse, or physician have in the course of a clinic session, especially if it entails dealing with an extreme reaction such as suicidal ideation.

On enrollment in the Special Prenatal Pro- gram at Bellevue Hospital, all women receive in- depth screening for past or current abuse. It is recognized that such disclosure often does not occur until there is a basis for trusting the person asking the question, or a belief that the question comes with the possibility of concrete services. Those women with current or previous abusive relationships are followed closely. They have 24- hour access to the domestic violence counselor. They receive ongoing counseling and support and facilitation of housing needs as well as legal support when appropriate. Active bidirectional referral mechanisms are in place with the adult primary care clinics, adult infectious disease clinic (for women with symptomatic HIV infection), and drug treatment programs (including outpa- tient day-treatment facilities, short-term detoxi- fication facilities, long-term residential facilities, and methadone maintenance programs).

All HIV-infected pregnant women enrolled for prenatal care at Bellevue are visited by a member of the pediatric infectious disease team. After delivery, before discharge, the pediatrician visits these mothers and informs them of the ser- vices provided in the pediatric infectious disease clinic, thus facilitating continuity of care and fol- low-up. The HIV counselors in the prenatal clinic also attend the pediatric infectious disease clinic and provide a consistent contact for the mothers.

The patients have daily access to the prenatal

HIV-Infected Pregnant Women 327

nurse for questions regarding the course of the pregnancy, missed appointments , compliance with medications, etc. Although any given patient may see the doctor once or twice a month, she may see or talk to the nurse several times a week. The nurse is also pivotal in ensuring compliance with those enrolled in on-site d rug t rea tment programs and pr imary health care referrals. Through this multidisciplinary team approach, 96% of HIV-infected children followed in Belle- vue's Pediatric Infect ious Disease Clinic have al- ready been identified by the time their H I V ser- ostatus was confirmed. That is, their mothers were identified either during the an tepar tum or pe r ipa r tum per iod through a p rog ram of uni- versal counseling and voluntary testing in an in- fo rmed populat ion.

Trends in Permanency Planning

A pregnan t woman whose life is complicated by a history of any one or a combinat ion of factors such as homelessness, drug use, violence, or in- carceration requires sustained social intervention to ensure the most positive outcome for herse l f and her baby. But H I V infection offers both spe- cial problems and opportunit ies. In the past few years, the realization that the H I V epidemic was creating a new category of o r p h a n - - c h i l d r e n whose mothers are dying of the d i sease- -has had at least one positive effect. More social service and legal providers are becoming specialists in assisting mothers with the difficult issues a round disclosing their H I V status to family members , including children; making plans for t emporary and eventually pe rmanen t custody of their chil- dren; and helping to create positive memories for the children. 1~-17

Pregnancy is an o p p o r t u n e time to introduce these sensitive subjects to women, as long as it is done in a careful step-by-step and sensitive way. Although serious symptomatic disease and dis- ability may be years away for an asymptomatic woman, the oppor tuni ty to discuss long- term custody plans with knowledgeable and caring counselors is valuable. O f course, p regnant women should not be badgered or made to feel that death is inevitable and imminent.

Some of the most difficult discussions concern disclosure of the pat ient 's H I V status to family members and o ther children. This is particularly difficult if H I V seropositivity is discovered during

pregnancy. Many women feel isolated, even f rom their closest friends and relatives, and do not share this information. In doing so, they believe they are protect ing themselves and their o ther children f rom rejection and possible harsh con- sequences, but they are also cutting themselves off f rom potential avenues of support .

The decision to tell, whom to tell, what to tell, and when is ultimately a personal choice. Coun- selors can assist, role play, advise, and suppor t the woman, but the outcomes are often unpre- dictable. Some family members are extremely support ive and loving; others, often unexpec ted ones, do reject and isolate, at least for a time.

When other children are involved, the deci- sions are even more complicated. Many women believe that the burden of knowledge is ei ther too heavy for their children or they fear that their children cannot keep the information within the family. I t is impor tant to reassure women that they do not have to disclose everything all at once; H I V itself need not be ment ioned until a child is ready. The fact that a mothe r is ill is enough to convey at the outset. Moreover, children do not necessarily ask all the most feared questions (How did you get it? Are you going to die?) all at once. They assimilate the pieces of information they need to unders tand their mother ' s illness and other changes in behavior. Finally, most children do know something is wrong even if they have not been told explicitly. Their fears, es- pecially their fears that they are somehow to blame, are often worse than the reality. As im- por tan t as honest and open communicat ion are, these are not simple goals to achieve. In some cases, accepting the child's level o f understanding and desire to know may be the best solution.

In the past few years, several steps have been taken to expand options in permanency planning for children whose mothers have HIV/AIDS. Standby guardian legislation, passed in New York State in 1992, and followed in eight o ther states so far (Connecticut, California, Florida, New Jersey, Nor th Carolina, Wyoming, Illinois, and Pennsylvania), offers one new option. Although family law varies by state, the general legal situ- ation before standby guardian legislation was that women could name a potential guardian in a will or could go to court to have a legal guardian designated before her death. The drawback to naming a person in a will is that the will must be probated, and the family court judge has a great

3 2 8 Levine and Allen

deal o f discretion in deciding whether to follow the woman's wishes. Because by definition when the will is probated, its writer is dead, she cannot speak to defend her reasons for naming, for ex- ample, a cousin rather than her sister, or her reasons for her unwillingness to have the child's father, if he is alive, involved. Naming a legal guardian, however, removes the parent f rom considerable decision-making power over the child and perhaps even from physical custody. Most ill women are very reluctant to give up this connection to their children; it is, they often say, the only reason they have to live.

Standby guardianship avoids these extremes by allowing a parent with a chronic, progressive, life-threatening illness to name (either with prior court approval or by simply signing a paper) a guardian to take over her children when she dies, becomes incapacitated mentally or physically, or when she requests the guardianship to take effect. In the court approval process, all potential legal challenges or problems are brought out at a time when the mother can express her own reasons for choosing a particular person as standby guardian. The designation process does not carry this full approval, but the designation itself is considered important evidence by the judge. Some attorneys believe that the designation is considered more weighty evidence than a state- ment in a will.

When the parent dies, the standby guardian only has to apply for final (or in the case of des- ignation, full) approval by the court and becomes a legal guardian. The one drawback to this pro- cess that mothers and potential guardians should understand is that a person whobecomes a legal guardian is not eligible for kinship or regular foster care subsidies. One of the many i ron ies - - one might say irrationalities--of the current child welfare system is that the path that leads to sta- bility and continuity for the child is strewn with financial disincentives for the new guardian, who in the case o f HIV/AIDS is often poor and bur- dened with many other responsibilities.

In most cities with large numbers of HIV-in- fected women, specialized legal and social ser- vices are developing expertise in assisting women with disclosure and custody planning. There is also a growing literature on the subject. 18 For the pregnant HIV-infected women who is asymptomatic, discussions on this subject will be just the beginning. It is important that she be

referred to other agencies who can help her with the process as time goes on.

Another area in which counselors can assist pregnant HIV-infected women is to encourage them to begin to create "memory stores" for their new baby and other children. Drawing family trees to save for the baby not only helps the mother think through possible resources for help later on but creates a tangible record for her child of the people who mattered. Records of pregnancy such as photos, sonograms, cards, balloons, or descriptions of baby showers or pre- sents can all enhance the importance of the event to the mother in a way that can be passed on to her child. It also starts a process that can be con- tinued and enlarged for the child's benefit.

Future Research Needs

Much more research is needed to illuminate the complex clinical and social needs of HIV-infected pregnant women. Studies are needed that focus on specific aspects of care and that broaden our understanding of the ways in which a woman's current and past social environment affects the course of her pregnancy. Here are a few exam- ples of research needs.

1. Drug treatment. More specific information is needed on drug treatment that is effective with women in general and pregnant women in particular. Much advocacy around access to drug treatment for women has focused on making slots in treatment centers available to pregnant women without firm understanding of their differing responses.

2. Sexual behavior. There is some anecdotal ev- idence that women who successfully stop drug use, and who extricate themselves from abu- sive relationships, turn to celibacy as a reac- tion to their past abuse. The extent of this phenomenon and its psychological implica- tions should be explored.

3. Contraceptive technology. There is an urgent need for research on many aspects o f contra- ception, including women-controlled methods and new forms of male contraception. The lack exists because of society's failure to invest in contraceptive research and technology. As a result, methods to prevent pregnancy and methods to prevent sexually transmitted dis- eases are seen as the same, whereas in reality the problems are distinct.

HIV-Infected Pregnant Women 3 2 9

4. Preventing perinatal HIV transmission. As more is learned about the many individual factors that seem to influence perinatal HIV transmission, 18 studies are needed to address the best way in which to create a unique pro- file of the risks of HIV transmission for each infected woman so that she can be apprised of her individual risks of transmission. It will be important to learn whether such individ- ualized risk assessments will make a difference in women's reproductive choices.

5. Permanency planning. More work is needed to determine how best to involve as early as possible HIV-infected women in permanency planning for their children while not giving them an unduly pessimistic view of their HIV status.

Conclusion

Against the current background of medical spe- cialization and social fragmentation, clinical care of HIV-infected pregnant women must move to- ward integration of services and an approach that takes into account the whole of a woman's life. Given the pernicious influences that have brought the woman to the point in her life when she faces the birth of a child not just with the normal apprehensions but with the host of fears surrounding her life circumstances and the po- tential of HIV transmission, this is a daunting task. Yet it can and must be done. At a time when the philosophy of "less is more" appears to gov- ern health policy and in turn clinical decision- making, the case for "more is more" must be made for HIV-infected pregnant women, their families, and their expected babies. Social inter- ventions are essential complements to the highest quality of clinical care.

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