Abandonment of infants by HIV-positive women in Russia and prevention measures

Abstract

Since 1990, Russia has experienced a dramatic increase in the number of abandoned children, associated with harsh socio-economic conditions, increases in drug and alcohol addiction and HIV infection. Approximately 20% of infants born to HIV-positive mothers are abandoned in Russia. To find out why, we conducted 266 qualitative interviews in 2004–05 in four Russian cities, including HIV-positive women who had abandoned their infants and others who had not, relatives of the women (mostly their mothers), HIV-negative women who had abandoned, and medical experts. Unintended pregnancy was cited as the most important factor influencing the decision to abandon. Other important determinants included lack of partner and family support, drug abuse, fear of birth defects or disabilities, negative attitudes of medical professionals, and marginalized socio-economic status. HIV infection was closely linked to many of these reasons. Important avenues for interventions among HIV-positive women emerged, including improved contraceptive information and provision, education of medical personnel and women on HIV prevention and treatment, enhancement of social support, and strengthening of fostering and adoption programmes for HIV-affected families.

Résumé

Depuis 1990, la Fédération de Russie a enregistré une augmentation alarmante du nombre d'enfants abandonnés, associée à la dureté des conditions socio-économiques, la hausse de la toxicomanie, de l'alcoolisme et de l'infection à VIH. Dans ce pays, près de 20% des nourrissons nés de mères séropositives sont abandonnés. Pour comprendre pourquoi, nous avons mené 266 entretiens qualitatifs en 2004–05 dans quatre villes russes, avec notamment des femmes séropositives qui avaient abandonné leur bébé et d'autres qui l'avaient gardé, des parents de ces femmes (généralement leur mère), des femmes séronégatives ayant abandonné un enfant et des experts médicaux. La grossesse non désirée était le principal facteur cité pour expliquer l'abandon. D'autres déterminants comprenaient le manque d'appui du partenaire ou de la famille, l'abus de drogues, la crainte d'anomalies congénitales ou de handicaps, les attitudes négatives des soignants et la marginalisation socio-économique. L'infection à VIH était étroitement liée à beaucoup de ces raisons. Des voies importantes d'intervention chez les femmes séropositives sont apparues, par exemple l'amélioration de l'information et de la distribution de contraceptifs, la formation du personnel médical et des femmes sur la prévention et le traitement du VIH, la consolidation du soutien social et le renforcement des programmes d'adoption et de placement pour les familles touchées par le VIH.

Resumen

Desde 1990, Rusia ha experimentado un alza drástica en el número de niños abandonados, asociado con duras condiciones socioeconómicas, aumentos en drogadicción y alcoholismo e infección por VIH. Aproximadamente el 20% de los bebés nacidos de madres VIH-positivas son abandonados en Rusia. Para saber por qué, realizamos 266 entrevistas cualitativas en 2004 y 2005, en cuatro ciudades rusas, con mujeres VIH-positivas que habían abandonado a sus bebés y otras que no, parientes de las mujeres (principalmente sus madres), mujeres VIH-negativas que habían abandonado y expertos médicos. El embarazo no intencional fue citado como el factor más importante que influye en la decisión de abandonar. Otros determinantes importantes fueron: falta de pareja y apoyo de la familia, abuso de drogas, temor de discapacidades o defectos congénitos, actitudes negativas de los profesionales médicos y condición socioeconómica marginada. La infección por VIH estaba estrechamente asociada con muchas de estas razones. Emergieron importantes vías de intervención entre las mujeres VIH-positivas, como mejor información y suministro de anticonceptivos, educación del personal médico y las mujeres respecto a la prevención y el tratamiento del VIH, mejoramiento del apoyo social y fortalecimiento de los programas de acogida y adopción para familias afectadas por el VIH.

Key Words:

• infant abandonment
• HIV pregnancy-related
• contraception and unwanted pregnancy
• injection drug use
• stigma
• socio-economic status
• Russia

Since 1990, Russia has experienced a dramatic 2.5-fold increase in the number of abandoned and orphaned children. By 2002, the Ministry of Education estimated that 700,000 orphaned children were living outside of family care.¹ This increase seemed to be associated with the harsh socio-economic conditions of the early 1990s, leaving many people vulnerable to poverty, drug and alcohol addiction, and an increase in infectious diseases, including HIV.²

Child abandonment has an enduring negative impact. Abandoned children are more vulnerable to developmental delay, cognitive impairment, chronic health problems and homelessness, and suicide when they reach adolescence.³ About 30% of orphaned and abandoned children in Russia are institutionalized. After being released from the orphanage, these children often lack skills needed for adult life. Institutionalization in childhood increases the likelihood that children will become psychologically impaired and economically unproductive as adults. Many end up living in the streets.⁴

With an increase in the number of women of childbearing age with HIV in Russia, the number of births to women with HIV has also increased.⁵ Reports from 2003–04 indicate that approximately 10–50% of infants born to HIV-positive mothers are abandoned at maternity hospitals; in contrast, the infant abandonment rate among women overall in Russia is 1%.^6–8 Some 20% of HIV-positive women do not receive any antenatal care. Due to HIV-associated stigma, abandoned children born to women with HIV are among the most vulnerable. Regardless of their own HIV status, these children are less likely to be adopted than infants of women who do not have HIV. Although abandoned infants born to HIV-positive mothers are often admitted to state institutions for orphans, it is not uncommon for orphanages to refuse them admittance, and they commonly remain isolated in hospital for years.⁹

In spite of the high frequency and tragic consequences of infant abandonment by women with HIV, to our knowledge the reasons why they abandon their infants have not been studied. We therefore carried out a study of the determinants of infant abandonment among HIV-positive mothers, as well as the perspectives of their immediate family members, mostly their mothers, and medical professionals working in maternity hospitals and AIDS centres. We sought to find out whether the woman's HIV status influenced her decision to abandon, and to identify measures to strengthen prevention of abandonment among women with HIV.

Methods

This qualitative study was conducted in four Russian cities with HIV seroprevalences above the national average of 235/100,000: St Petersburg (647/100,000), Orenburg (678/100,000), Samara (730/100,000) and Irkutsk (778/100,000).

Physicians and nurses working at local City and Regional AIDS Centres and maternity hospitals served as regional coordinators and recruiters. They used existing delivery, laboratory, and abandonment logs at maternity hospitals serving women with infectious diseases to identify potential participants among those who had given birth within the preceding two years and among those who had abandoned their infants after delivery. Criteria included confirmed HIV status and a live birth and, where relevant, abandonment within the two preceding years documented in the medical record. Only personnel employed by the hospitals and clinics which provided clinical care had access to the names of women with HIV and only they invited potential participants to participate. Sampling was systematic, as recruiters started with the most recent full month's log of deliveries and worked backwards in time to identify consecutive women potentially eligible to participate. Women meeting the criteria were informed of the study through phone calls or in person, at routine clinic visits. A minimum of three weeks was required between delivery and interview in order to allow women time to recover before being interviewed about a sensitive personal decision.

Recruiters were able to contact 41–87% of potential participants identified in the records. Of the other women identified, the phone was disconnected or the woman could not come to the phone. The relatives of HIV-positive women invited to participate were their mothers or husbands/partners who were aware of the woman's HIV status. In most cases, only mothers became participants. Experts included both the chief gynaecologists at maternity hospitals or City AIDS Centres, and social workers who served HIV-positive women. All the experts invited for interview agreed to participate.

Participants (266 in total) included 46 HIV-positive women who had abandoned their infants and 32 of their relatives, 62 HIV-positive women who had not abandoned their infants and 41 of their relatives, 43 HIV-negative women who had abandoned their infants, and 42 medical specialists, including obstetrician–gynaecologists and social workers from maternity hospitals, women's outpatient clinics and City AIDS Centres in the four cities.

Face-to-face, individual interviews were conducted by a Russian team highly experienced in qualitative research (EP, AM, OD). Between September 2004 and October 2005, the team travelled to each city and collected data over a one-week period. In-depth, semi-structured interviews with HIV-positive women and their relatives were conducted in City AIDS Centres, and with HIV-negative women in women's clinics. Each respondent was informed of the purpose of the interviews and verbal consent was obtained; each participant received the equivalent of US$15 to cover time and transportation expenses. Interviews included a series of open-ended questions exploring the influence of maternal HIV status on the woman's decision to abandon, primary reasons for abandonment, and suggested approaches to prevent abandonment by women in future.

The interview guide for all respondents was similar. It covered how, when and why women decided to abandon or parent their infants; who influenced them most; whether health professionals and relatives played a role; and what factors would make it possible for a woman to parent rather than abandon her child. HIV-positive women were asked specifically about whether HIV influenced a woman's decision to abandon or to parent. Because both abandonment and HIV infection carry serious stigma, specific demographic data were not collected as researchers were concerned not to undermine trust. Questions were also asked indirectly in the third person (“What factors would influence an HIV-infected woman to abandon her baby?”) rather than directly in the first person (“What influenced you as an HIV-infected woman to abandon your baby?”). The interviews lasted 25–35 minutes and were tape-recorded and subsequently transcribed. The protocol was reviewed for human subjects concerns at the US Centers for Disease Control and Prevention and in Russia by the Ministry of Health, and determined to be exempt from the institutional review board approval process because of its focus on public health practice. All interviewers were instructed on maintaining confidentiality and privacy.

Analysis began with multiple readings of the interview transcripts by all three members of the research team to define a set of coding categories that were used to code data. Each interview was evaluated for contradictory statements, logic of arguments and interpretations. To assure inter-rater reliability, each of the three researchers who collected the primary data coded the same section of text independently; the team then discussed any discrepancies until agreement was reached. Follow-up analysis included comparisons within each group, between groups, and between cities. Themes were identified based on observations by investigators and patterns seen were revised by returning repeatedly to transcripts. Illustrative quotes were retrieved from coded data.

Demographic characteristics of participants

HIV-positive women are not less likely than other women to become pregnant.¹⁰¹¹ In Russia, however, HIV-positive women are more likely than other women to abandon their infants. Participants were women aged 16–40 years, generally of lower socio-economic status. Both HIV-positive and HIV-negative women who abandoned their infants were more likely to be unmarried than those who did not abandon. Official St Petersburg surveillance data from 2004–05 from HIV-positive mothers giving birth can be used to help describe them demographically. These data show that although many women who delivered in that time period used injection drugs before pregnancy (63%), most HIV-positive pregnant women reported not using injection drugs during pregnancy (68%). Furthermore, HIV-positive women tended to be married or living as married (80%), and 97% of them were aged 15–30.¹²

Findings

Primary reasons for abandonment of an infant

On the whole, almost all respondents believed that abandonment was “a general problem” in society and that factors influencing HIV-positive mothers to abandon were similar to those in other mothers. Respondents in all four cities and groups believed that the HIV status of the mother and her newborn was not the true reason for abandonment, but was more likely a socially acceptable excuse.

“No one abandoned (a baby) because of HIV.” (Medical professional)

“If a woman initially did not want a baby, [worry about HIV infection] was just an excuse.” (HIV-positive woman)

“I did not really care if the baby had HIV or not; even without HIV infection; [I] just could not bring up a baby.” (HIV-positive woman)

Other important determinants of abandonment mentioned most often by HIV-positive mothers, their relatives, HIV-negative mothers and experts included unwanted pregnancy, lack of family support, drug abuse, fear of birth defects or disabilities, and marginalized socio-economic status. HIV infection was closely linked to a number of these.

Unintended pregnancy

The strongest explanation for abandonment cited either directly or indirectly by almost all respondents was that the pregnancy was unintended, and either unwanted or mistimed. This finding was the most salient determinant of abandonment for the HIV-positive women and their relatives, HIV-negative women and experts. This finding was unexpected, given the far higher rate of abandonment by HIV-positive mothers that has been documented. Commonly, the women who had abandoned an infant explained that when they became pregnant they were “not ready” to become mothers, “scared of responsibility”, “depressed” or “did not have maternal feelings”. Medical professionals and social workers in all four cities described gaps in contraceptive knowledge as well as lack of interest in contraception.

“They do not know how to prevent pregnancy. Young people have very low levels of knowledge, though they have all kinds of lectures about this [in high school and college].” (Medical professional)

“In our time, people have children thoughtlessly – a woman has a baby simply because she became pregnant.” (Medical professional)

Most of the women offered little explanation for why they did not use contraception or did not have an abortion. Some women gave vague reasons or mentioned inconvenience. Others expressed concerns about contraceptive safety and effectiveness. Some mothers considered childbirth “a natural element” of sexual life and abandonment an alternative to contraception or abortion. Their opinions were that “it might be easier to give birth and abandon a child than to have to think about using contraception”. Some mothers simply “did not want to use contraception” or “did not have time to consult a specialist”. Others said they were ”awfully scared of all these contraceptives because they are hormonal” or that they had previously “taken pills and yet got pregnant” and therefore “[did] not believe in them anymore”. Some believed condoms were also ineffective.

There were cases of single women justifying abandonment to avoid compromising their future. Other respondents hoped their pregnancy would salvage a conflictive relationship with the baby's father; when it did not, they abandoned the baby.

“I needed to arrange my private life first and here was this child. No, I needed to take care of my life.”

“I wanted this pregnancy because I was hoping to improve the relationship. I thought the child would help. But then I realized that it was too late… On the contrary, my life was going to collapse and the child would make things worse.”

There were several HIV-positive women who felt that a child improved their quality of life, however. Several such mothers who did not abandon felt that HIV had actually made them determined to have a child. Realizing that they might only have a short time to live, childbirth could be a positive incentive for hope.

“[I want] just to live like normal people. You hear you will die from HIV after five years, but still you want a normal life, with a child.”

Maternal drug use

Many women who use injection drugs in Russia have become HIV-positive through needle-sharing. In St Petersburg and Irkutsk, the majority of respondents believed that injection drug use was one of the main factors influencing infant abandonment. In contrast, it was less common for respondents in the smaller cities (Orenburg and Samara) to view injection drug use as a major determinant of abandonment.

Injection drug use is highly stigmatized in Russia, and it may be that very few of the mothers interviewed reported previous use of such drugs for this reason. According to some mothers interviewed, it was typical for drug-addicted women to show “indifference towards their lives” coupled with “lack of responsibility”, which together often led them to abandon their children. Relatives of HIV-positive mothers observed that women addicted to drugs, because of their “unpredictable lifestyles,” frequently gave birth and yet refused responsibility for caring for their children. Similarly, the following attitudes were typical of those expressed by medical professionals:

“Drug-addicted women show indifference towards their future… lack of responsibility… chaotic, unpredictable lifestyles [often leading them to abandon].”

The medical professionals interviewed observed a substantial number of cases of abandonment among drug- and alcohol-addicted women who were unable to care for themselves or for their infants. They believed that drug-using parents were “completely indifferent about their lives” and that “about 50–60% of drug users abandoned their babies”.

“Drug users perhaps act more responsibly by abandoning a child than if they make them live nobody knows in what conditions or where… It is better to let them abandon a child.” (Medical professional)

The consensus among the medical professionals was that it was virtually impossible for a drug-addicted woman to care for her child, that there was “no point for a child to live in such a family”, that the mother “would not care about him at all” despite all the heartfelt talks experts had with her.

Lack of family support

The women and medical professionals interviewed said that lack of support from immediate family, particularly when a woman was deciding whether or not to keep her baby, was an important determinant of abandonment. The great majority of HIV-positive and HIV-negative mothers, as well as relatives and experts, reported lack of social support from the child's father and/or the child's grandparents and relatives as salient determinants of abandonment. Young women living with their parents and women drug users were reported to be more dependent than those living with husbands or partners and those who did not use drugs upon relatives for support. If a woman's parents believed the child would be a burden, it was not uncommon for them to give their daughter an ultimatum either to relinquish her baby or be deprived of their support. There were numerous examples of women abandoning their babies under pressure from the child's grandparents:

“My mother was absolutely against [the baby]. In our family we all do things her way. What I wanted did not mean much. How could I argue if I was not married? How could I bring him up? I had to abandon him.”

“…My dad was against [the baby]. He said he would throw me out. I live with my parents and have no place to go. If my mom had given me a hand and told dad that she had a different opinion, perhaps things would have turned out differently.”

In some cases, HIV-positive women were forced by their families into abandonment due to the unfounded fear that HIV infection could be transmitted from the newborn to other siblings. One HIV-positive woman thought her mother would never let her bring the baby home:

“You already have a kid who is not infected. I do not want you to bring home this infection.”

In many cases families were not ready to accept an HIV-positive child because of stigma. Parents were afraid that if the HIV-positive status of a child became known it would result in “isolation”, “disgrace” and “a wrecked life” for the child.

Many medical professionals believed that HIV-positive women should have children only if they were strongly supported by a family prepared to provide child care in case of the death of the parent(s).

“I saw a woman who came with her pregnant daughter and said: ‘I know that my daughter can die but I want her to leave someone after her. I want to have a grandchild and I am ready to take the burden.’” (Mother of HIV-positive woman)

Whereas experts and mothers cited lack of family support as an important reason for abandonment, some HIV-positive mothers reported that medical experts themselves displayed stigma and discrimination, advising them to abandon their infants.

Views and influence of medical professionals

For some professionals, “abandonment has always existed and always will”. They viewed infant abandonment as deeply engrained in a long history of sociocultural relationships.

HIV-positive mothers often did not receive either antenatal care or perinatal HIV prophylaxis. HIV-positive mothers frequently reported that instead of receiving counselling and support they were stigmatized and treated with disrespect, condemnation and rudeness in general medical facilities, where personnel were unprepared to deal with HIV. Concern about confidentiality in relation to their HIV infection led many women to avoid seeking antenatal care. The only setting where HIV-positive patients felt confident about getting medical attention was at the City AIDS Centres.

A medical student who was HIV-positive said that she had had only one class in medical school dedicated to HIV. Thus, medical personnel often shared the same fears as their HIV-positive patients. Physicians who had not received specialized training pertaining to HIV tended to discourage patients with HIV from having children, being uneducated about the success of perinatal prophylaxis in protecting infants. Some physicians thought that it might even be dangerous for other children to share medical facilities with perinatally-exposed babies, who would not get a confirmed diagnosis until 18 months of age.

Concerns about birth defects, disabilities

Both HIV-positive and HIV-negative women cited fear of birth defects and disabilities in infants as important reasons for abandonment. About half the HIV-positive women and many of their relatives believed that HIV infection could increase the risk of disabilities, birth defects and physical and mental problems in their babies, due to the mother's infection, and cited this as one of the main reasons for abandonment. Few mothers understood that more and more HIV-exposed infants are born without HIV because of increasing use of perinatal antiretroviral prophylaxis. Furthermore, few realized that infants born with HIV now live to adolescence and beyond, provided there is access to highly active antiretroviral treatment, care and social support.

In all four cities, experts also commonly viewed disability or birth defects as acceptable reasons for abandonment, because of stigma and discrimination towards disabled persons, difficult social adaptation due to lack of infrastructure, and barriers to procuring adequate medical attention for disabled children who are cared for in the home.

“I mostly was afraid that he would be a freak – four eyes, one arm. Well, I decided that if he was disabled I would abandon him. But if he turned out [simply] to be HIV-positive I would never abandon him.” (HIV-positive mother)

“Everyone would point at him [a disabled child]. Many would be outraged: ‘How is such a person allowed on the street?’ I have witnessed such situations.” (HIV-positive mother)

Marginalized socio-economic status

The great majority of respondents in all groups believed that marginalized socio-economic status often played an important role in abandonment. In the current economic climate, having a child was a “luxury” within reach only of well-to-do families. The overall opinion was that poverty was not an independent reason for abandonment, but masked a broader spectrum of social problems. Many interviewees connected poverty with the general social status of the mother, who was often single and jobless, and had no permanent place of residence.

“Women abandon when they do not have a job, do not have money; usually there is no husband, no place to live… ” (Medical professional)

Poverty as a factor related to abandonment was mentioned less frequently in the two smaller cities (Orenburg and Samara). There, many respondents were sure that a child could be brought up “in any conditions”.

“It would be very difficult to imagine my child living somewhere else with other people.” (HIV-positive woman)

Possible approaches to preventing abandonment

Overall, mothers who did not abandon differed from those who did, in that they were more likely to have wanted their pregnancies, to have extended family support, and to express a determination to parent their child in spite of socio-economic obstacles. They were also less likely to express fears about birth defects or disabilities.

Most respondents found it difficult to identify how to prevent abandonment, especially abandonment by mothers with HIV. However, some respondents were able to identify possible prevention strategies, most of which were to do with improving medical and social policies and strengthening familial and other social support. All agreed that discrimination must be addressed if prevention of abandonment is to be strengthened.

Mothers of HIV-positive women believed medical experts could be very influential with HIV-positive mothers, e.g. through counselling about the low likelihood of HIV transmission to infants with effective antiretroviral prophylaxis. HIV-positive women also believed that such counselling would help to overcome their general fears about the effect of HIV on their pregnancies.

Some of the medical professionals suggested that the AIDS Centres should provide antenatal care for HIV-positive women to dispel their fears and strengthen social support. The media were also identified as a possible source of information for HIV-positive mothers, in that they could contribute to prevention of infant abandonment by tailoring messages to HIV-positive mothers and their families.

Mothers, relatives and medical professionals suggested increasing the voluntary use of contraception among HIV-positive women as an inexpensive, effective approach to reducing unintended pregnancies. However, barriers which prevent women from using contraception would have to be addressed, including fear of hormonal contraception and the high cost of long-acting methods.

Having recognized through our interviews that lack of support from relatives was highly influential in abandonment cases, the medical professionals and social workers proposed a more proactive approach for dealing with families of HIV-positive pregnant women. In some cases, they said, it had been possible to prevent abandonment by informing the HIV-positive woman's parents that they had a grandchild.

“We inform grandparents, who usually do not even know about the baby. They gladly come to take the baby home.” (Medical professional)

As regards support for families with HIV-exposed infants, mothers commonly believed that state-subsidized assistance was virtually non-existent. Although state-subsidized services are in fact available, the complexity of requirements often rendered them inaccessible. There were numerous complaints from professionals and relatives that in order to get financial assistance, parents were required to “collect tons of papers” and to overcome so many obstacles and humiliation from state bureaucrats that most simply avoided applying. Some professionals suggested that it would help if prevention of abandonment was given the status of a state programme called “support for abandoned children”.

Most respondents had only vague ideas about the legal rights of people living with HIV. In all cities, numerous examples of discrimination were cited, including refusal to admit HIV-exposed and HIV-infected children to schools and pre-schools. In St Petersburg and Irkutsk, with a strong network of non-governmental organizations providing assistance to people with HIV, however, women and their relatives had found the staff compassionate and helpful in solving some of their medical and social problems.

Discussion

Although this assessment showed that HIV infection per se was not considered by respondents to be a determinant of abandonment, many inter-related factors leading to abandonment were among those also making women vulnerable to HIV, such as unprotected intercourse, injection drug use, marginalized social status, and lack of social support. Lack of social support for HIV-positive mothers was manifested in HIV-related stigma and discrimination, and extended to interactions with families, society and medical personnel. Such stigma had critical health consequences for HIV-positive mothers, who often did not receive either antenatal care or perinatal HIV prophylaxis.

Reports on reasons for infant abandonment among the general population in Russia indicate that many mothers who abandon may be unwilling or unable to accept the responsibility of caring for a dependent child.¹³¹⁴ In spite of this, use of contraception is low, according to general surveys of Russian women.¹⁵¹⁶ Although abortion rates are high,¹⁵ including among HIV-positive women, we believe women who abandon infants may be less likely to seek any medical services other than the most urgent, even when confronted with an unwanted pregnancy.

Our study confirms previous reports that abandonment in Russia is highly associated with deficits in both social support and financial resources, both for HIV-positive and HIV-negative mothers.¹⁴¹⁷ The combination of low education and high risk behaviours, including substance abuse, have also been associated with abandonment and other poor outcomes for infants.¹⁸¹⁹ The importance of contraceptive services for HIV-positive women who do not want to become pregnant is also obvious.²⁰

Limitations that may have influenced our findings include, first, that interviewees were not randomly selected and so may not be representative of HIV-positive women or women who abandon their infants. Second, the highly sensitive nature of the questions about child abandonment may have led to socially acceptable responses. However, we believe that any bias in responses was reduced by asking indirect questions about other women instead of directly to the woman being interviewed about herself. Our approach allowed women to choose to discuss their personal situations indirectly rather than directly, which at times they chose to do. It is possible that the indirect approach may at times have elicited their opinions instead of their actual personal experience, but sometimes what was expressed as an opinion sounded as if it was in fact their own experience. Third, our assessment of the role of substance abuse in child abandonment may have been incomplete because it was difficult to locate drug-using HIV-positive women who had abandoned an infant, as phone numbers were no longer in service or incorrect, or no one answered. Finally, because most women identified their mothers for the interview with a relative, we had insufficient data on partners' perspectives.

Previous reports on child abandonment in Russia have focused primarily on its consequences, including the effects of institutionalization on the child's health and adoption practices.³⁴ Our findings point to possible avenues for interventions among HIV-positive women, which will require national policy and programmes. In addition to the recommendations made by respondents, we would add that knowledgeable and supportive medical personnel can be instrumental in correcting myths, providing appropriate medical care during pregnancy, including counselling and antiretroviral prophylaxis and treatment, and referrals to psychologists and social workers, who can assist families following an HIV diagnosis.

Children with HIV are at greater risk of certain health problems. They and their HIV-positive parent(s) all need to receive treatment, care and support. Other preventive measures include generalized education about services for HIV-positive mothers and their families, reducing stigma and discrimination, and support for extended families (especially parents of positive women), harm reduction programmes for drug-using women and their partners,²¹ assistance to marginalized families, tailored fostering and adoption programmes, and specialized training in the care of perinatally HIV-exposed infants. Critical attention to such interventions is paramount in light of the substantial number of perinatally HIV-exposed infants who are being abandoned in Russia.

Acknowledgements

We appreciate the contributions of the participants and local experts who gave their time. We also appreciate the funding support provided by the United States Agency for International Development and by Assistance to Russian Orphans.