Fertility Desires and Intentions of HIV-Positive Men and Women

By James L. Chen, Kathryn A. Phillips, David E. Kanouse, Rebecca L. Collins and Angela Miu

Family Planning Perspectives
Volume 33, Number 4, July/August 2001

http://www.agi-usa.org/pubs/journals/3314401.html

Fertility issues for HIV-positive men and women are becoming increasingly important. Advances in treatment, such as zidovudine and other antiretroviral drugs, have decreased transmission from infected mothers to their children to about 2%.¹ Furthermore, as effective therapies have improved the prognosis for women and men who get infected with HIV, these individuals are more frequently considering childbearing and parenthood.² To address these issues, we examine here the fertility desires and intentions of HIV-infected men and women using a nationally representative sample of HIV-infected adults in treatment.

Despite the growing importance of fertility issues for HIV-infected men and women, little is known about their actual fertility desires and intentions. Among the few studies in the United States, the prevalence of pregnancy after diagnosis in convenience samples of infected women ranges from 18% to 40%.³ A recently published study using the nationally representative HIV Cost and Services Utilization Study (HCSUS) sample found that 12% of all women and 26% of women younger than 30 had children after HIV diagnosis.⁴ However, that study did not address whether the pregnancies were intentional, nor did it include information about the desires and intentions of HIV-infected men and women to have children in the future. Given the dramatic recent advances in treatment, fertility desires and intentions in late 1998 are likely to foreshadow future fertility behavior more closely than the fertility histories of HIV-infected adults as of 1996 and early 1997, when highly active antiretroviral therapy had only recently become widely available.

Although this research indicates that some women have children even after HIV diagnosis, very little is known about their desires to have children, and to our knowledge there have been no studies of HIV-positive men's desire to have children. The majority of studies have examined childbearing and women's choice to continue a pregnancy. They provide only limited information about fertility desires and intentions, however, because they exclude women who are not pregnant and include some women who got pregnant unintentionally.⁵

Choices to continue pregnancy are also confounded by feelings about abortion. Studying fertility desires and intentions directly is essential to focus on the subset of HIV-infected men and women who are most likely to become pregnant by choice. This is an important subpopulation whose counseling and service needs differ substantially from those of women who experience unwanted pregnancy.

The desire of HIV-infected persons to have children in the future has significant implications for the transmission of HIV to sexual partners and newborns. Although the risk of transmission of HIV from mother to infant can be decreased with prophylactic treatment, maternal transmission accounts for almost all new HIV infections in children.⁶ The risk of HIV transmission among individual couples is likely to increase as more infected individuals choose to have children with their HIV-negative partners. In addition, many children of infected parents are likely to need social services, including income supplementation, housing, child care and, for those who lose one or both parents, bereavement support, foster care or adoption.⁷ An accurate description of fertility desires and intentions among infected individuals is necessary to aid infected individuals who desire and expect children to do so without sacrificing the health and well-being of their newborns, their partners and themselves. As a benchmark for gauging the fertility-related counseling and service needs of HIV- infected adults, it is useful to compare their desires and intentions with those of non-HIV-infected adults; in this study, we make such comparisons for the U.S. population of women using data from the National Survey of Family Growth.

This study is the first to use a representative sample to describe the desire for and intentions to have children among HIV-positive men and women. Our weighted sample represents the national population of HIV-positive adults receiving medical care in the United States in 1996. We separately analyze desires for and expectations about having children, and examine how desires and intentions are associated with a range of social and demographic, health and HIV-related factors.

METHODS

Sample Description

The sample for this study was drawn from a larger sample of participants in the HCSUS. This was a multistage national probability sample of 2,864 persons at least 18 years old with known HIV infection who made at least one visit for regular or ongoing care to a nonmilitary, nonprison medical provider other than an emergency department in the contiguous United States during a specified period in the first two months of 1996. HCSUS baseline interviewing began in January 1996 and ended 15 months later. Full interviews had been conducted with 2,864 of 4,042 eligible persons (71%). Full details of the HCSUS design⁸ and other published HCSUS results are available elsewhere.⁹

The Risk and Prevention Study sample on which our analyses are based consisted of 1,421 persons from the HCSUS sample. Eligible members of the HCSUS sample were those who were interviewed in English at HCSUS baseline, whose gender was unambiguous based on HCSUS data, and who participated in a second, follow-up HCSUS interview between August 1997 and January 1998 (N=2,205).

We drew a subsample of 1,794 from this group, sampling randomly after stratifying by primary sampling unit, type of health care provider, age, ethnicity and self-described sexual orientation. Eligible white gay men aged 40 and older were sampled with a one-third probability, eligible white gay men aged 39 and younger were sampled with a four-ninths probability and all others were sampled with a probability of one. Interviews were conducted from September through December 1998. The completion rate was 79%; the response rate after allowing for known mortality was 84%. The resulting sample of 1,421 was weighted to represent a reference population of 197,063 adults receiving HIV care in the 48 contiguous states in early 1996 who survived and were eligible to be interviewed in 1998.

For this analysis, we restricted the sample to bisexual and heterosexual men aged 20 and older and all women aged 20-44 at the time of the Risk and Prevention Study. We excluded men who identified themselves as exclusively gay. The unweighted sample consisted of 361 men and 377 women. Weighted sample sizes were 53,177 men and 34,833 women.

Survey Instrument and Procedures

Risk and Prevention Study participants were contacted directly, using information that they provided at earlier interview waves. The survey covered sexual activities, attitudes and beliefs related to HIV transmission and its prevention, and fertility and contraception attitudes and behavior. All interviews were conducted in person, using a combination of computer-assisted self-interviewing and computer-assisted personal interview methods. Interviewers asked questions and entered responses for most of the interview using a laptop computer.

Hypotheses

We developed four hypotheses for this study.

•First, because of the risks of transmission to the newborn,¹⁰ the potential health risks for HIV-infected women to have children¹¹ and concerns regarding childrearing, we hypothesized that HIV-infected women would desire and expect fewer children than the general U.S. population.

•Our second hypothesis was that many HIV-infected individuals would expect not to have children because of the potential risks of having children, the physical inability to have children or the unwillingness of their partner.¹²

•Additionally, the recent finding that 12% of women but only 2% of men in the HCSUS sample conceived a child after HIV diagnosis suggests that fertility desires and intentions may differ by sex, with women desiring and expecting more children in the future than men.¹³

•Finally, we hypothesized that fertility desires and intentions would vary by age, risk group, fertility history, health status, relationship status and HIV status of the primary partner, in accordance with previous studies of reproductive decisions.¹⁴

Variables

The majority of the variables that we examine here were collected during the Risk and Prevention Study interview. The outcome variables were fertility desire and fertility intention. Fertility desire was defined by the response to a question asking whether the respondent would like to have children in the future. Women who were trying to get pregnant were not asked if they desired children in the future, but we included them by imputation in the "desire children" category. Of respondents who indicated they would like to have children in the future, fertility intention was defined by a separate question asking how many children the respondent expected to have in the future. Since women who were pregnant at the time of the interview were not asked if the pregnancy was wanted or if they desired children in the future, we treated those women as missing responses with respect to both fertility desires and intentions.

Predictor variables included demographic, relationship, fertility history and health variables, as well as other indicators that were expected to be associated with fertility desire or intention. The likelihood of abortion was examined through the use of the question: "If you were to become pregnant now, how likely would you be to have an abortion?" Those who were trying to become pregnant were included in the category of "definitely would not abort." Women who were pregnant and expecting to carry to term were treated as missing in the abortion question, which they were not asked.

The variable "partner's desire to have children" was defined only for respondents who had a spouse or an opposite-sex partner. For those who had such a partner and were trying to get pregnant, partner's desire to have children was coded "yes." Women who were currently pregnant and men whose partner was pregnant were coded as missing, since the partner may or may not have desired the pregnancy.

Tubal ligation status was asked only of women who had an opposite-sex partner in the six months preceding the Risk and Prevention Study interview. Participants self-reported their current number of children in response to the question: "How many children do you have?" Total number of births expected was a derived variable that combined the number of children and the number of children expected from the question: "How many (more) children do you expect to have?"

Relationship status combined marital status and current relationship to classify respondents in the following categories: married; nonmarried partner; separated or divorced; or widowed or never-married. Marital status was determined by the question: "What is your legal marital status?" Current relationship status was determined by the question: "Do you currently have a male relationship partner (boyfriend), or a female relationship partner (girlfriend)?" The primary partner or spouse's HIV status was based on the respondent's report, as were the respondent's lowest-ever CD4 count* and the importance of religion in the respondent's life.

Our quality-of-life variables consisted of self-reported overall health, physical functioning and emotional well-being.¹⁵ For each scale, the average of the items was placed on a 0-100 range, with higher scores representing better health, functioning and well-being. Overall health was a self-rating of current health. Physical functioning was based on the SF-36^† and is composed of self-ratings of the extent to which the following activities are limited: engaging in vigorous activities; climbing stairs; walking more than one mile; walking more than one block; bathing or dressing; doing housework; shopping; getting around; and feeding yourself. Emotional well-being was composed of self-ratings of the extent to which the respondent experienced the following states in the previous four weeks: calm and peaceful; downhearted and blue; happy; very nervous; sad; anxious or worried; and depressed. Five of these items were drawn from the SF-36.

Age was based upon the respondent's age at the time of the Risk and Prevention Study interview. Ethnicity, education, employment, income, HIV risk group and sexual orientation were all self- reported and taken from the HCSUS baseline interview.

Weighting and Data Analysis

The Risk and Prevention Study analysis weight for each respondent is the multiplicative product of the respondent's HCSUS second follow-up weight, a Risk and Prevention Study sampling weight and a Risk and Prevention Study attrition weight. This analysis weight is equivalent to an estimate of the number of persons in the Risk and Prevention Study target population represented by that respondent. The HCSUS weights are fully described elsewhere.¹⁶ The Risk and Prevention Study sampling weight adjusts for the differential probabilities of selection; the Risk and Prevention Study attrition weight adjusts for second follow-up respondents who were eligible for the study but were not successfully interviewed. To adjust standard errors and statistical tests for the differential weighting and complex sample design, we used linearization methods in Stata.¹⁷

We first describe the social and demographic characteristics and fertility desires and intentions of the sample members by gender. Weighted Pearson's chi-square tests were performed to compare characteristics and fertility intentions between men and women. We then compare the total number of births expected for the HCSUS Risk and Prevention Study women with those of the 1995 National Survey of Family Growth (NSFG), the most recent wave of a large nationally representative sample of women aged 15-44 in the civilian noninstitutionalized U.S. population.¹⁸ Conducted by the National Center for Health Statistics, the NSFG provides data on factors affecting pregnancy and women's health.

We then examine the social and demographic characteristics of men and women according to their desire to have children. Predictor variables were tested separately for men and women using the weighted Pearson's chi-square test. Among men and women who desired children, we examine the associations of selected variables with the expectation of having children.

We constructed a multivariate logistic regression model separately for men and women, using as outcomes first the desire for, and then the expectation of, children. Predictor variables were restricted to those significantly related to at least one of the two outcomes at the bivariate level. The final model included these variables: age; age squared; race and ethnicity; number of children; tubal ligation status; overall health; physical functioning; relationship status; and the HIV status of the respondent's primary partner or spouse.

RESULTS

Fertility Desires and Intentions

Twenty-eight percent of HIV-positive heterosexual or bisexual men and 29% of HIV-positive women who receive medical care in the United States desire children in the future (Table 1)

, but fewer expect to have children in the future. Of those desiring children, 31% of women and 41% of men do not expect to have any. Among those who desire children, about one-quarter of men and about half of women expect to have one child, while about one-third of men and 13% of women expect to have two or more children. Thus, although a similar percentage of HIV-positive men and women desire children, fewer men expect to have children in the future.

Among individuals who were married or had a heterosexual partner, 46% of women and 33% of men have partners who desire children in the future. Almost one-third of HIV-positive women in the total sample definitely would have an abortion if pregnant, and a little more than a third definitely would not.

General Sample Characteristics

Three-quarters of the respondents previously had children, with one-third having three or more (Table 2).

Overall, sample respondents were generally black or Hispanic and of lower socioeconomic status. Women in the sample were younger, less-educated, more often Hispanic, of lower socioeconomic status and more likely to have a nonmarital partner than were men. Women were most commonly infected through heterosexual contact (60%), while injection drug use was the most common risk group for men (41%). More than 50% of respondents had had CD4 counts of less than 200 per mm³, while 27% of men and 18% of women had an undetectable viral load. More than half were married or in a relationship, and 26% of men and 27% of women had an HIV-positive partner. Most were somewhat or very religious, with women being more religious than men.

Comparison with U.S. Women

The percentage of HIV-positive women desiring children in the future (29%, Table 1) was less than the 36% of women in the U.S. population who desired children in the future.¹⁹ Similarly, the percentage of HIV-positive women who were expecting children was slightly less than the percentage among women in a sample of the U.S. population across all age-groups (Table 3).

The percentages of HIV-infected women who expected at least one child ranged from 82% to 89% across age-groups, compared with 85-94% among U.S. women as a whole. The percentages of women who were expecting two or more children were also consistently and substantially lower among the HIV-infected, ranging from 57% to 65% across age-groups compared with 68-81% among U.S. women in general.

Who Desires Children?

Three-quarters or more of HIV-positive men and women who desired children in the future had partners who would like to have a child, but nearly 20% of men who desired children had a partner who did not (Table 4).

Seventeen percent of men who desired children and who had had sex within the last six months had a partner with a tubal ligation, and 22% of women who desired children and had had sex within the last six months had a tubal ligation.

More than half of women who desired children said they definitely would not have an abortion if they were to become pregnant, while 8% definitely would have an abortion if pregnant. Importantly, 27% of those who did not desire children also said they would definitely not have an abortion. Men and women who desired children had fewer children than those who did not desire children. In fact, almost 40% of those who desired children had had no previous children.

HIV-positive men and women who desired children were younger than those who did not. The percentage who had had a tubal ligation was significantly lower among women who desired children (22%) than among those who did not (40%), but men who desired children were as likely to have a partner with a tubal ligation as were those who did not desire children. In terms of health, men who desired children had higher self-ratings of physical functioning and women who desired children had higher self-ratings of overall health than their counterparts who did not desire children. However, the desire for children was not significantly related to HIV progression (either the lowest CD4 count or viral load) in either men or women, nor was it significantly related to emotional well-being.

Women who desired children were more likely either to be married or to have a partner (84%) than were those who did not (64%). Men who desired children were no more likely to have had an opposite-sex partner than were men who did not desire children. The percentage of men who identified themselves as bisexual was somewhat greater among those who desired more children (23%) than among those who did not (18%), although this difference was not statistically significant. Women who desired children were more likely to have a partner of unknown HIV status (32%) than were women who did not desire children (14%).

In a multivariate analysis (not shown), women with at least one child were less likely to desire children than were women with no children (odds ratio, 0.77; 95% confidence interval (CI)=0.6, 0.9; p<.05). Women with better overall health were more likely to desire children (odds ratio, 1.03; 95% CI=1.01, 1.04; p<.05). However, women with better physical functioning were less likely to desire children (odds ratio, 0.98; 95% CI=0.97, 0.99; p<.05). Women whose partner's HIV status was negative (odds ratio, 0.33; 95% CI=0.15, 0.74; p<.05) or positive (odds ratio, 0.38; 95% CI=0.15, 0.98; p<.05) were less likely to desire children than were women whose partner's HIV status was unknown. There were no significant multivariate predictors of desire for children among men.

Who Intends to Have Children?

Among HIV-positive men and women who desired children, the percentage of those younger than 40 who actually expected to have children was almost always greater than the percentage who did not (Table 5).