literature review on family planning

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Institute of Medicine (US) Committee on a Comprehensive Review of the HHS Office of Family Planning Title X Program; Stith Butler A, Wright Clayton E, editors. A Review of the HHS Family Planning Program: Mission, Management, and Measurement of Results. Washington (DC): National Academies Press (US); 2009.

A Review of the HHS Family Planning Program: Mission, Management, and Measurement of Results.

• Hardcopy Version at National Academies Press

2 Overview of Family Planning in the United States

According to the Centers for Disease Control and Prevention (CDC), family planning is one of the 10 great public health achievements of the twentieth century, on a par with such accomplishments as vaccination and advances in motor vehicle safety (CDC, 1999). The ability of individuals to determine their family size and the timing and spacing of their children has resulted in significant improvements in health and in social and economic well-being (IOM, 1995). Smaller families and increased child spacing have helped decrease rates of infant and child mortality, improve the social and economic conditions of women and their families, and improve maternal health. Contemporary family planning efforts in the United States began in the early part of the twentieth century. By 1960, modern contraceptive methods had been developed, and in 1970 federal funding for family planning was enacted through the Title X program, the focus of this report.

This chapter provides an overview of family planning in the United States. It begins by explaining the importance of family planning services and the crucial needs they serve. Next is a review of milestones in family planning, including its legislative history. The third section provides data on the use of family planning services. This is followed by a discussion of the changing context in which these services are provided, including changes in the populations served by Title X, changes in technology and costs, the growing evidence base for reproductive health services, and social and cultural factors. The fifth section addresses the financing of family planning. The final section presents conclusions.

• WHY FAMILY PLANNING IS IMPORTANT

According to the World Health Organization (WHO), family planning is defined as “the ability of individuals and couples to anticipate and attain their desired number of children and the spacing and timing of their births. It is achieved through use of contraceptive methods and the treatment of involuntary infertility” (working definition used by the WHO Department of Reproductive Health and Research [WHO, 2008]). The importance of family planning is clear from its benefits to individuals, as well as to families, communities, and societies (AGI, 2003). Family planning serves three critical needs: (1) it helps couples avoid unintended pregnancies; (2) it reduces the spread of sexually transmitted diseases (STDs); and (3) by addressing the problem of STDs, it helps reduce rates of infertility.

These benefits are reflected in the federal government’s continued recognition of the contribution of family planning and reproductive health to the well-being of Americans. Responsible sexual behavior is one of the 10 leading health indicators of Healthy People 2010, a set of national health objectives whose goal is to increase the quality of life and years of healthy life. The Healthy People indicators reflect major public health concerns. The United States has set a national goal of decreasing the percentage of pregnancies that are unintended from 50 percent in 2001 to 30 percent by 2010 (HHS, 2000). The objectives for increasing responsible sexual behavior are to increase the proportion of adolescents who abstain from sexual intercourse or use condoms if currently sexually active, and to increase the proportion of all sexually active persons who use condoms.

The 2007–2012 Department of Health and Human Services (HHS) Strategic Plan is intended to provide direction for the Department’s efforts to improve the health and well-being of Americans. The provision of family planning services promotes several HHS goals, including increasing the availability and accessibility of health care services, preventing the spread of infectious diseases (through testing for STDs/HIV), promoting and encouraging preventive health care, and fostering the economic independence and social well-being of individuals and families. The contribution of Title X to these goals is discussed in Chapter 3 . 1

Finding 2-1. The provision of family planning services has impor tant benefits for the health of individuals, families, communities, and societies. There is a continued need for investment in family planning and related reproductive health services, particularly for those who have difficulty obtaining these important services.

Avoiding Unintended Pregnancy

The ability to time and space children reduces maternal mortality and morbidity by preventing unintended and high-risk pregnancies (World Bank, 1993; Cleland et al., 2006). Unintended pregnancy is associated with an increased risk of morbidity for the mother and with health-related behaviors during pregnancy, such as delayed prenatal care, tobacco use, and alcohol consumption, that are linked to adverse effects for the child. According to the Institute of Medicine (IOM) report The Best Intentions: Unintended Pregnancy and the Well-Being of Children and Families :

The child of an unwanted conception especially (as distinct from a mistimed one) is at greater risk of being born at low birth weight, of dying in its first year of life, of being abused, and of not receiving sufficient resources for healthy development. The mother may be at greater risk of depression and of physical abuse herself, and her relationship with her partner is at greater risk of dissolution. Both mother and father may suffer economic hardship and may fail to achieve their educational and career goals. Such consequences undoubtedly impede the formation and maintenance of strong families. (IOM, 1995, p. 1)

In 2000, approximately half of unintended pregnancies resulted in abortion (Finer and Henshaw, 2006); thus the availability and appropriate use of contraception can also reduce abortion rates (AGI, 2003). 2 In addition to preventing unintended pregnancies, effective use of contraceptives (latex condoms) can reduce the transmission of STDs (see the discussion below).

When children are adequately spaced (with conception taking place no sooner than 18 months after a live birth, or about 2.5 years between births), they are less likely to suffer complications. Such complications include low birth weight, which is associated with a host of health and developmental problems (Conde-Agudelo et al., 2006). Low birth weight and premature birth are more likely to occur to women under 18 and over 35, and to those who have already had four or more births (WHO, 1994).

In addition to its maternal and infant health benefits, family planning can increase the involvement of partners in decisions about whether and when to have children. One of the most important aspects of helping people plan for pregnancy is helping them avoid unintended pregnancy. Couples who are able to plan their families experience less physical, emotional, and financial strain; have more time and energy for personal and family development; and have more economic opportunities (Cleland et al., 2006). In turn, effective family planning results in fewer strains on community resources, such as social services and health care systems (WHO, 1994) .

According to the IOM report cited above, women are considered at risk of unintended pregnancy if they “(1) have had sexual intercourse; (2) are fertile, that is, neither they nor their partners have been contraceptively sterilized and they do not believe that they are infertile for any other reason; and (3) are neither intentionally pregnant nor have they been trying to become pregnant during any part of the year” (IOM, 1995, p. 28). Among the nearly 50 million sexually active women aged 18–44, 28 million (56 percent) are at risk of unintended pregnancy (Frost et al., 2008a). Given that the onset of sexual activity increasingly occurs before marriage, when the proportion of pregnancies that are unintended is greatest (see below), the highest proportion of women at risk of unintended pregnancy is found among those aged 18–29 (70 percent), although a significant proportion of women aged 30–44 (40 percent) are also at risk (IOM, 1995).

While significant advances have been made in contraceptive technology and the availability of family planning services, rates of unintended pregnancy in the United States remain high, particularly for certain segments of the population. In 2001, 49 percent of pregnancies were unintended, a rate that had not changed since 1994 (Finer and Henshaw, 2006) . In 2001, unintended pregnancies resulted in 1.4 million births, 1.3 million induced abortions, and an estimated 400,000 miscarriages (Frost et al., 2008a). Notably, the United States has high rates of unintended pregnancy compared with other developed countries. For example, the percentage of unintended pregnancies in France is 33 percent and in Scotland 28 percent (Trussell and Wynn, 2008). Unintended pregnancies result in societal burden, and significant economic savings are realized through investment in family planning services. The Guttmacher Institute has estimated that every $1.00 invested in helping women avoid unwanted pregnancies saved $4.02 in Medicaid expenditures (Frost et al., 2008b).

A variety of factors contribute to unintended pregnancy, including lack of access to contraception, failure of chosen contraceptive methods, less than optimal patterns of contraceptive use or lack of use, and lack of adequate motivation to avoid pregnancy (Frost et al., 2008a). The reasons for the high rate of unintended pregnancies in the United States, particularly in relation to rates in other industrialized countries, are poorly understood. A better understanding of these reasons from the perspective of current, former, and potential users of family planning services is needed (see Chapter 5 for discussion of the need for better data collection systems to capture client perspectives).

Unintended pregnancy is most likely among women who are young, unmarried, low-income, and/or members of racial or ethnic minorities (see Figures 2-1 through 2-3 , respectively), although it occurs in significant numbers across demographic groups (IOM, 1995). Teenagers and young adults aged 18–24 have the highest rates of unintended pregnancy—more than one intended pregnancy occurred for every 10 women in this age range, which is twice the rate for women overall (Finer and Henshaw, 2006). Unsurprisingly, unintended pregnancies represent the highest proportion of all pregnancies among teenagers and young adults as well, ranging from 100 percent for those under 15, to 82 percent among those aged 15–19, to 60 percent among those aged 20–24 (Finer and Henshaw, 2006). However, teenage pregnancy rates dropped 38 percent between 1990 and 2004, from 116.8 per 1,000 to 72.2 per 1,000 among those aged 15–19 (NCHS, 2008). The pregnancy rate dropped more sharply among teenagers aged 15–17 (from 77.1 per 1,000 in 1990 to 41.5 in 2004, a 46 percent decline) than among those aged 18–19 (167.7 per 1,000 to 118.6 per 1,000, a 29 percent decline). The teenage birth rate also declined over the past two decades, from a peak of 61.8 per 1,000 in 1991 to 40.5 per 1,000 in 2005, a 35 percent decrease. The birth rate among teenagers aged 15–19 increased 3 percent between 2005 and 2006, to 41.9 per 1,000 (NCHS, 2008). Teenage pregnancy rates are currently available only through 2004, but preliminary data suggest that there may also have been an increase in the teen pregnancy rate between 2005 and 2006 (The National Campaign, 2009).

Percentage of pregnancies that were unintended, by age, 1994 and 2001. SOURCE: Finer and Henshaw, 2006.

Percentage of pregnancies that were unintended, by race and ethnicity, 1994 and 2001. SOURCE: Finer and Henshaw, 2006.

With regard to marital status, the rate of unintended pregnancy is significantly higher among unmarried women (67 per 1,000) than among married women (32 per 1,000) (Finer and Henshaw, 2006). Fully 74 percent of pregnancies among unmarried women were unintended in 2001, compared with 27 percent of those among married women (Finer and Henshaw, 2006). The rate of unintended pregnancy is also substantially higher among poor women (112 per 1,000) than among women living at or above 200 percent of the federal poverty level (29 per 1,000) (Finer and Henshaw, 2006). The proportion of unintended pregnancies is inversely related to income: among pregnant women living at or below the poverty level in 2001, 62 percent of pregnancies were unintended; in comparison, 38 percent of pregnancies were unintended among women at or above 200 percent of the poverty level (Finer and Henshaw, 2006). However, because women with higher incomes are more likely to have an abortion when they experience an unintended pregnancy, the rate of unintended births among poor women (58 per 1,000) is more than five times greater than that among women in the highest income category (11 per 1,000) (Finer and Henshaw, 2006). Unintended pregnancy rates are also higher among women with lower levels of education and minority women (Finer and Henshaw, 2006).

Percentage of pregnancies that were unintended, by income as a percentage of the federal poverty level, 1994 and 2001. SOURCE: Finer and Henshaw, 2006.

Preventing Sexually Transmitted Diseases and Reducing Infertility

In addition to preventing unintended pregnancies, Title X was designed, particularly after the 1978 amendment, to emphasize services for adolescents and infertility services. As discussed later in this chapter, the 1995 program priorities provided for expansion of reproductive health services to include screening for and prevention of STDs, including HIV/AIDS. The diagnosis and treatment of STDs is an essential component of comprehensive reproductive health care and, as noted above, also helps reduce rates of infertility.

Notable shifts have occurred in the prevalence of STDs. In 1970, gonorrhea was the most prevalent STD (see Figure 2-4 ). Rates of gonorrhea peaked in 1975 at 464 cases per 100,000 and declined dramatically during the 1980s and early 1990s following the implementation of the national gonorrhea control program in the mid-1970s (CDC, 2007). Rates leveled off during the past decade to a low of 112.4 cases per 100,000 in 2004, but increased in both 2005 and 2006 (to 120.9 cases per 100,000). Changes in screening and reporting practices, as well as the use of varying diagnostic tests, may mask true increases or decreases in the disease (CDC, 2007).

Rates of sexually transmitted diseases reported by state health departments per 100,000 population, United States, 1970–2006. NOTE: Chlamydia rates were not reported until 1984.

Rates of chlamydia (reported since 1984) have steadily increased over time, although the increase in reported infections reflects increased screening activities, improvements in diagnostic testing, stronger reporting requirements, and better reporting systems, as well as possible true increases in the disease (CDC, 2007). There is evidence that chlamydia is associated with subsequent infertility (Mol et al., 1997; Land and Evers, 2002), although it is not absolutely clear whether routine screening will reduce tubal infertility. However, screening is a CDC recommendation and Healthcare Employer Data and Information Set requirement. In 2006, there were 347 cases of chlamydia per 100,000 individuals in the civilian population.

Compared with gonorrhea and chlamydia, rates of syphilis have remained relatively low. In 2006, there were 12.5 cases of syphilis at all stages per 100,000 individuals in the United States. Nonetheless, the disease remains an important problem that is more common in the south and in urban areas in other parts of the country (CDC, 2007).

Nonexistent at the time Title X was enacted, HIV/AIDS emerged in the early 1980s, and today more than 1.2 million people in the United States are living with HIV/AIDS. While the number of new AIDS cases and deaths has declined since the early to mid-1990s, the number of Americans living with AIDS has steadily increased (see Figure 2-5 ).

Estimated new AIDS cases, deaths among persons with AIDS, and people living with AIDS, 1985–2004. SOURCE: The Henry J. Kaiser Family Foundation, 2005. This information was reprinted with permission from the Henry J. Kaiser Family Foundation. The (more...)

In 2006, the CDC estimated that approximately 1.1 million persons were living with HIV infection, three-quarters of whom were men and one-quarter of whom were women. In 2006, nearly half (48 percent, or 532,000 persons) of all people living with HIV were men who have sex with men (CDC, 2008b). People exposed through high-risk heterosexual contact (which includes those who report specific heterosexual contact with a person known to have or to be at high risk for HIV infection, such as injection drug users) accounted for an additional 28 percent (305,700 persons) of all people living with HIV in 2006 (CDC, 2008b).

Minorities, particularly African Americans and Hispanics, are disproportionately affected by HIV. While African Americans make up only 12 percent of the U.S. population, they accounted for nearly half (46 percent) of all people living with HIV in the United States in 2006. The HIV prevalence rate for African Americans (1,715 per 100,000 population) was almost eight times as high as that for whites (224 per 100,000) in 2006. Hispanics, who make up 15 percent of the total U.S. population, accounted for 18 percent of people living with HIV in 2006. The prevalence rate for Hispanics (585 per 100,000) was nearly three times that for whites (CDC, 2008b).

As shown in Figure 2-6 , the HIV prevalence rate is far higher among men than women regardless of race or ethnicity. Nonetheless, women are also severely affected, particularly African American and Hispanic women, who experience HIV prevalence rates 18 and 4 times the rate for white women, respectively (CDC, 2008).

Estimated HIV prevalence rate per 100,000 population by race and ethnicity and gender, United States, 2006. SOURCE: CDC, 2008b.

Finding 2-2. A significant number of people remain at risk for unintended pregnancy, sexually transmitted diseases, and infertility, and therefore are in need of family planning services.

• MILESTONES IN FAMILY PLANNING

The United States saw a dramatic decline in maternal and infant mortality, as well as the total fertility rate, 3 during the twentieth century. These declines are associated with the achievements in family planning that took place in this country during that period.

At the beginning of the twentieth century in the United States, the subject of birth control was not openly discussed. For example, anti-obscenity laws, including the federal Comstock law (March 3, 1873, Ch. 258, § 2, 17 Stat. 599), banned the discussion or distribution of contraceptives. These laws were not declared unconstitutional until 1972 ( Eisenstadt v. Baird, 405 U.S. 438). Nonetheless, public interest in and acceptance of birth control increased greatly between 1920 and 1960. Three primary factors fueled these rapid shifts in attitude toward family planning: (1) the changing role of women in American society; (2) concern about population growth; and (3) the availability of new, highly effective contraceptive methods, such as the birth control pill and intrauterine devices (IUDs). Figure 2-7 provides an overview of milestones in family planning in the United States.

Milestones in family planning in the United States (Part 1 of 3). SOURCES: AGI, 2000; AMA, 2000; PBS, 2003.

The women’s movement, which gained ground during the late eighteenth and early nineteenth centuries, centered largely on women’s suffrage until the right to vote was won in 1920. The birth control movement was founded around that time by a public health nurse, Margaret Sanger, who argued that women had the right to control their own bodies and fertility, and that access to birth control was necessary to achieve gender equality. Sanger opened the first birth control clinic in the United States in 1916 and continued to be a strong advocate for the birth control movement throughout the next half century (Wardell, 1980; PBS, 2003).

part 2 of 3.

part 3 of 3.

In 1935, Title V was enacted by Congress as part of the Social Security Act. With roots in the establishment of the Children’s Bureau in 1912, the Title V legislation authorized the creation of Maternal and Child Health programs, which were dedicated to promoting and improving the health of mothers and children. In 1943, the Emergency Maternity and Infant Care Program was enacted (P.L. 78-156). This program provided payment and services for pregnant wives and infants of low-ranking men in the armed forces. Several other developments and changes to the program occurred over the next several decades.

The strong population growth the country experienced as a result of the postwar baby boom in the late 1950s (see Figure 2-8 ) also had a significant effect on American attitudes toward family planning (Barnes, 1970). Studies conducted in the decades after World War II revealed that women were having more children than they desired (Gold, 2001). Low-income women in particular were found to be at risk for unintended pregnancies, largely because they lacked adequate access to contraception, while unplanned births, as discussed above, were associated with increased poverty and dependence on public services (Gold, 2001). The groundwork laid by the establishment of maternal and child health programs was important for the development of family planning programs. Helping individuals avoid pregnancy is an important aspect of enabling them to plan for pregnancy and also an important strategy in improving maternal and child health.

Fertility rate, United States, 1910–2004.4 NOTE: The fertility rate reflects the total number of live births, regardless of age of the mother, per 1,000 women aged 15–44.

The Food and Drug Administration’s (FDA’s) approval of the birth control pill in 1960 marked a significant turning point in the availability of effective and reversible contraceptive methods. Previously, couples had relied on less effective methods, such as condoms, diaphragms, withdrawal, and the rhythm method (Westoff, 1972). The birth control pill was adopted quickly by American women, and by 1970 approximately 22 percent of married women of reproductive age (nearly 6 million women) were using oral contraceptives (Westoff, 1972). The availability and use of the highly effective IUD also grew during this period.

Today, contraceptive technology and options, including long-term methods, are advancing rapidly and increasing in number. More effective methods have been developed, including the combined pill (most recent FDA approval in 2003), Seasonale oral contraceptive (FDA approved in 2003), the contraceptive patch (FDA approved in 2001), the vaginal contraceptive ring (FDA approved in 2001), the contraceptive injectable (most recent [Lunelle] FDA approval in 2000), the sterilization implant (FDA approved in 2002), and the lovenorgestrel-releasing IUD Mirena (FDA approved in 2000). However, the high cost of some of these options, particularly long-term methods, may prohibit their use by many women (see the discussion of changes in technology and costs later in this chapter).

The impact of family planning and contraceptive use in helping couples achieve their desired family size and timing is reflected in the reduction in the national total fertility rate (live births per 1,000 women aged 15–44) shown in Figure 2-8 . Between 1900 and 2004, the rate decreased from 127 to 66 (NCHS, 1975, 2007; Darroch, 2006).

The first federal family planning grants were funded in 1964 through the Office of Economic Opportunity as part of President Lyndon B. Johnson’s War on Poverty. The genesis and popularity of these grants reflected, in part, the recent and increasing availability of new reversible methods of contraception as outlined above. In the mid-1960s, however, it became evident that, because the modest funds from these grants were controlled by the states, the family planning programs developed with these funds varied greatly in their accessibility, eligibility requirements, and services provided. This realization added to the growing interest in having a federal program that could make grants directly to public and private entities within a state, bypassing the state governments.

President Richard Nixon showed a particular interest in family planning. In a message to the Congress in July 1969, he wrote: “It is my view that no American woman should be denied access to family planning assistance because of her economic condition. I believe, therefore, that we should establish as a national goal the provision of adequate family planning services within the next five years to all those who want them but cannot afford them” (Nixon, 1969).

As discussed in Chapter 1 , the Title X Family Planning Program, established in 1970 under Title X of the Public Health Service Act and signed into law by President Nixon, provides grants for family planning services, training, research, and informational and educational materials. In enacting Title X, Congress emphasized that many poor women desired family planning but were unable to obtain it. The program was also intended to decrease the adverse health and financial effects of inadequately spaced childbearing on children, women, and their families (S. Rep. 91-1004, 91st Cong., 2d Sess., [July 7, 1970]; H.R. Rep. No. 91-1472, 91st Cong., 2d Sess., [September 26, 1970]).

Title X has often been affected by the strongly held differences of opinion in this country regarding the acceptability of abortion. The program has been forbidden to pay for abortions since its inception. In the waning days of the Reagan Administration, however, the Secretary of Health and Human Services issued regulations stating that a “Title X project may not provide counseling concerning the use of abortion as a method of family planning or provide referral for abortion as a means of family planning” (53 Fed. Reg 2922-01 [Feb. 2, 1988] codified at 42 CFR § 59.8[a][1], repealed by Presidential Memorandum on January 22, 1993 [58 Fed. Reg. 7455] 42 CFR § 59.8(a)(1)), and forbidding referral of a pregnant woman to an abortion provider even if she specifically requested it (53 Fed. Reg 2922-01 [Feb. 2, 1988] codified at 42 CFR § 59.8[b][5], repealed by Presidential Memorandum on January 22, 1993 [58 Fed. Reg. 7455]) (42 CFR § 59.8(b)(5)). Title X providers were also forbidden to advocate for or support abortion in a host of ways and were required to be “physically and financially separate” from any abortion activities (53 Fed. Reg 2922-01 [Feb. 2, 1988] codified at 42 CFR § 59.9, repealed by Presidential Memorandum on January 22, 1993 [58 Fed. Reg. 7455]) (42 CFR § 59.9). These regulations were upheld by the Supreme Court in 1991 in Rust v. Sullivan (500 U.S. 173) against challenges that they were inconsistent with the statutory language of Title X and violated the constitutional rights of providers and patients, but were repealed shortly after President Clinton took office (58 Fed. Reg. 7455 [January 22, 1993] 59 Fed. Reg. 57560-1, November 14, 1994). In 2000, the following language was adopted (65 Fed. Reg. 41278 [July 3, 2000]; 65 Fed. Reg. 49057 [August 10, 2000]):

Each project supported under this part must: …

(5) Not provide abortion as a method of family planning. A project must:

Offer pregnant women the opportunity to be provided information about each of the following options:

Prenatal care and delivery;

Infant care, foster care, or adoption; and

Pregnancy termination.

If requested to provide such information and counseling, provide neutral, factual information and nondirective counseling on each of the options, and referral upon request, except with respect to any options(s) about which the pregnant woman indicates that she does not wish to receive such information and counseling. 45 CFR § 59.5(a)(5)

The Bush Administration promulgated new regulations, stating that recipients of federal funds may not force clinicians with religious or conscientious objections to abortion to mention or counsel patients about that option or penalize these providers for refusing to do so. The regulations also imposed new requirements for documentation of nondiscrimination against religious objectors. However, a notice of rescission has been published by the Obama Administration (74 Fed. Reg. 10207, March 10, 2009).

Additional funding for family planning services for low-income individuals became available when Congress amended the Medicaid program in 1972 (AGI, 2000). The amendment required all state Medicaid programs to cover family planning services and established two additional Medicaid provisions intended to improve access to such services (Gold et al., 2007). The amendment required that states provide family planning services and supplies to all individuals who desire them and are eligible for Medicaid without cost sharing, and established a special matching rate of 90 percent for those services and supplies. Although Title X was the primary public funding source for family planning in the years after its introduction, Medicaid soon assumed that role (Sonfield et al., 2008a). (See the discussion of financing of family planning services later in this chapter, and Chapter 3 for discussion of the unique role of Title X funding.)

• THE USE OF FAMILY PLANNING SERVICES

According to CDC, nearly three-quarters of women of reproductive age (approximately 45 million women aged 15–44) received at least one family planning or related medical service in 2002 (Mosher et al., 2004). Among women who have ever had intercourse, 98 percent have used at least one method of contraception (Mosher et al., 2004).

Contraceptive use is common among women aged 15–44. In 2002, almost two-thirds (62 percent) of women in this age group reported using one or more forms of contraception; the remaining 38 percent were not currently using a contraceptive method for such reasons as being pregnant or postpartum, trying to get pregnant, or not being sexually active (Chandra et al., 2005). Among those reporting using contraception in the month of interview, the most common methods cited were the contraceptive pill (19 percent), female sterilization (17 percent), male condoms (15 percent), male sterilization (6 percent), and withdrawal (5 percent). Other methods, including the contraceptive implant, patch, diaphragm, periodic abstinence, rhythm, natural family planning, sponge, cervical cap, and female condom, were reported by 4 percent; the 3-month injectable Depo-Provera by 3 percent; and an IUD by 1 percent (Chandra et al., 2005). Women may have reported multiple methods used concurrently.

Figure 2-9 illustrates the percentage of women aged 20–44 who reported current use of a contraceptive method in 2002, by percent of the federal poverty level. The incidence of female sterilization is strongly correlated with poverty. It is the contraceptive method reported most commonly by women living below 149 percent of the federal poverty level (41 percent), as well as those living at 150–299 percent of that level (33 percent). By contrast, among those earning above 300 percent of the federal poverty level, 20 percent reported using female sterilization. The pill is the most popular method cited by those with incomes at or above 300 percent of the federal poverty level (36 percent), and the second most popular among women at lower income levels (Chandra et al., 2005).

Percentage of women aged 20–44 currently using a method of contraception, by primary method and percent of federal poverty level (FPL), United States, 2002. NOTE: “Other methods” include Norplant TM , Lunelle TM , contraceptive patch, (more...)

Figure 2-10 shows the percentage distribution of women aged 15–44 by current contraceptive status and race and ethnicity. Women of Hispanic or Latina origin and black women reported greater rates of female sterilization, while white women were more likely than Hispanic or black women to report relying on male sterilization as their primary form of contra ception. White women reported significantly higher use of the contraceptive pill (22 percent) as compared with black (13 percent) and Hispanic (13 percent) women. Hispanic women were more likely to use an IUD as a contraceptive method. Condom use did not appear to vary by race and ethnicity (Chandra et al., 2005). The reasons for these differences in contraceptive methods, which may reflect social, economic, or cultural factors, are not fully understood and warrant further exploration.

FIGURE 2-10

Percentage distribution of women aged 15–44, by current contraceptive status and race and ethnicity, United States, 2002. SOURCE: Chandra et al., 2005.

• THE CHANGING CONTEXT IN WHICH FAMILY PLANNING SERVICES ARE PROVIDED

In the 38 years since the establishment of Title X, the health care system and the overall social environment of the United States have changed in ways that dramatically increase the complexity and cost of providing family planning services to the groups served by the program. The numbers of individuals requiring publicly funded family planning services have undergone substantial shifts and grown dramatically overall. Social changes, particularly sexual values and social norms regarding sexual activity and reproductive health services, have affected the desire for and delivery of services. Technological advances have expanded the number and quality of contraceptive options available to women, leading to rapidly changing standards of care and increased costs. The greater diversity of people in need also increases the complexity of providing appropriate care. Changes in the financing of health care have left an ever-growing number of people in need of family planning services, despite the infusion of new funds from Medicaid. This section reviews these changes in the social and health care landscapes to provide a clearer picture of the ongoing need for and challenges facing the Title X program.

Changes in Populations Served by Title X

As noted earlier, while the Title X program is designed to provide access to services for all who want and need them, special emphasis is placed on low-income individuals and adolescents. The population of low-income individuals is disproportionately comprised of racial and ethnic minorities. According to a recent estimate, of the 36.2 million women in need of contraceptive services and supplies (sexually active and able to become pregnant, but not wishing to become pregnant), 17.5 million needed publicly funded services because they had incomes below 250 percent of the federal poverty level or were younger than 20 (Guttmacher Institute, 2008b). This figure represents an increase of 7 percent since 2000. While men are identified as a group to be served by Title X, they make up only a small percentage of Title X clients.

When the program was established in 1970, approximately 6.4 million people aged 18–44 (3.9 million women and nearly 2.5 million men) were living below the federal poverty level (see Figure 2-11 ). The number of adults living in poverty peaked in 1993 at 15.1 million. After a steady decline for several years, the number of poor Americans began to rise again in 2001. In 2007, 13.8 million Americans aged 18–44 (8.2 million women and 5.6 million men) lived in poverty. (While these absolute numbers more than doubled between 1970 and 2007, the percentage living in poverty among all people aged 18–44 increased more gradually, from 9 to 12.5 percent.)

FIGURE 2-11

Number and percent of people aged 18–44 living in poverty, 1970 to 2007. NOTES: Data prepared by Census Survey Processing Branch/Housing and Household Economic Statistics Division. For information on confidentiality protection, sampling error, (more...)

Although projections of the number of people living in poverty are not provided by the Census Bureau, Figure 2-12 indicates that the total number of adults aged 18–44 is expected to grow over the next 20 years—from 112 million in 2007 to 125 million in 2025. One would expect the number of people in need of publicly funded family planning services to rise accordingly, especially in light of current economic conditions. Specific subpopulations—adolescents, racial and ethnic minorities, immigrants, and the undocumented population—are discussed in turn below.

FIGURE 2-12

Projections of numbers of U.S. adult residents aged 18–44, 2007–2025. SOURCE: U.S. Census Bureau, 2008b.

Adolescents

Providing family planning services to adolescents is a crucial function of Title X programs; the 1978 amendment to Title X emphasized expanding services to this population. As discussed above, the rate of unintended pregnancy is higher in this group compared with women in other age groups. The adolescent population has changed dramatically in the past several decades (see Figure 2-13 ). In 1970, there were approximately 20.1 million adolescents between the ages of 13 and 17 in the United States. By 1975, this number had increased to 21.3 million. From the late 1970s through the 1980s, the population of teens declined, reaching a low point of 16.7 million in 1990. Since then, the number of teens has steadily increased. In 2006, the last year for which population estimates are currently available from the Census Bureau, there were 21.4 million adolescents aged 13–17. The ratio of male to female adolescents remained constant throughout the period 1970–2006, with males making up 51 percent of the adolescent population and females 49 percent. Projections for 2008, which are based on Census 2000, suggest that the adolescent population will decrease from 2008 to 2012 (from 21.5 to 20.9 million), and then steadily increase from 2013 to 2025 (from 20.9 to 23.6 million). As shown in Figure 2-13 , the proportion of the total U.S. population represented by adolescents has decreased since 1970, but has hovered at about 7 percent since the late 1980s and is expected to remain steady at around this level over the next 20 years. Nonetheless, as the absolute number of adolescents continues to rise, so, too, will their need for care.

FIGURE 2-13

Estimates and projections of number of adolescents aged 13–17 and adolescents as a proportion of the total population, 1970–2025. SOURCES: U.S. Census Bureau, 2008b, 2009a,b.

The adolescent population is more racially and ethnically diverse than the general population, with greater percentages of African Americans, Hispanics, and American Indians than are found among the population as a whole (NAHIC, 2003). African American and Hispanic adolescents are significantly more likely than same-age peers of other racial/ethnic groups to have family incomes at or below the federal poverty level (NAHIC, 2003). Adolescents also have unique health needs stemming from the developmental and mental health factors associated with this age period. They are often using contraception for the first time and so need extra attention to ensure success. Moreover, adolescents may be more likely than adults to engage in risky behaviors that can have adverse health effects. Some adolescents, particularly those who are uninsured or underinsured (see the discussion of the uninsured below), may have little access to primary medical care and may instead rely for care on school health centers, publicly funded clinics, and hospital emergency departments. Finally, confidentiality is a particularly common concern among adolescents that requires a unique response from health care providers. (See the further discussion of adolescents in the section on serving populations that are the focus of Title X in Chapter 4 .)

Racial and Ethnic Minorities

As noted earlier, the population of low-income individuals is disproportionately composed of racial and ethnic minorities. Changes in the definitions of various racial and ethnic groups in the United States make it somewhat difficult to assess trends. (Starting with the 2000 Census questionnaire, race and Hispanic ethnicity were recorded separately.) Nonetheless, marked shifts have clearly occurred in the racial and ethnic composition of the U.S. population (see Figure 2-14 ). In 1980, Hispanics made up 6.5 percent of the total U.S. population; by 2000, this proportion had risen to approximately 12.6 percent (CensusScope, 2001). In 2007, 20 million Hispanics (of any race) of reproductive age (18–44) were living in the United States, 3.8 million (18.9 percent) of whom were living below 100 percent of the federal poverty level (U.S. Census Bureau, 2008a). The proportion of black non-Hispanics remained relatively stable, increasing from 11.5 to slightly over 12 percent between 1980 and 2000 (CensusScope, 2001). In 2007, 14.6 million African Americans (who did not report any other race category, including Hispanic) of reproductive age (18–44) were living in the United States, 3.2 million (21.7 percent) of whom were living below 100 percent of the federal poverty level (U.S. Census Bureau, 2008a). The Asian population grew from 1.5 percent to 3.6 percent between 1980 and 2000 (CensusScope, 2001). In 2007, 5.8 million Asians (who did not report any other race category, including Hispanic) of reproductive age (18–44) were living in the United States, 563,000 (9.7 percent) of whom were living below 100 percent of the federal poverty level (U.S. Census Bureau, 2008a). The American Indian population remained at less than 1 percent in 2000 (CensusScope, 2001).

FIGURE 2-14

Race and ethnicity selections, U.S. Census, 1998–2000. SOURCE: CensusScope, 2001.

Figure 2-15 shows the 2006 racial distribution of the U.S. population for both people of Hispanic origin and those who did not identify themselves as Hispanic or Latino. In 2006, 67 percent of the U.S. population self-identified as white, not of Hispanic origin, while 12 percent self-identified as black or African American, not of Hispanic origin (U.S. Census Bureau, 2000). An additional 4 percent self-identified as Asian, not of Hispanic origin. Within the 15 percent of the population that identified themselves as being of Hispanic or Latino origin, the most common racial designation was white (53 percent of the population), followed by some other race alone (40 percent) and two or more races (7 percent) (U.S. Census Bureau, 2000).

FIGURE 2-15

Racial distribution of the U.S. population by Hispanic or Latino origin, 2006. SOURCE: U.S. Census Bureau, 2006.

A greater proportion of racial and ethnic minorities lived in poverty compared with white Americans (see Figure 2-16 ). Compared with 8.8 percent of white non-Hispanics, 21.7 percent of non-Hispanic blacks, 9.7 percent of non-Hispanic Asians, 21.5 percent of Hispanics (of any race) had incomes below the federal poverty level in 2007 (U.S. Census Bureau, 2008a). Despite the lower percentage of non-Hispanic whites living in poverty, this population made up almost half of those living in poverty because it represents two-thirds of the overall population.

FIGURE 2-16

Percentage of people aged 18–44 living below 100 percent of the federal poverty level, by race and ethnicity, 2007. SOURCE: U.S. Census Bureau, 2008a.

In 2003, the most recent year for which data are available, there were approximately 33.5 million “foreign born” individuals living in the United States, representing 11.7 percent of the population (U.S. Census Bureau, 2003). The U.S. Census Bureau uses the term “foreign born” to refer to anyone who is not a U.S. citizen at birth, including naturalized U.S. citizens, lawful permanent residents, temporary residents (such as foreign students), refugees, and those who are present illegally (undocumented) in the United States. Because the Current Population Survey (CPS) conducted by the Census Bureau is intended to represent all residents of the United States living in households (persons in institutions are excluded), undocumented immigrants are assumed to be included in the data. However, because the CPS includes no questions intended to determine legal status, undocumented immigrants cannot be identified from CPS data (see the section on the undocumented population below).

Both the number of foreign born persons in the United States and their proportion of the American population have risen since Title X was enacted in 1970 (see Figure 2-17 ). In 2003, approximately 30 percent of foreign born persons currently residing in the United States (9.2 million) were women aged 15–44 (U.S. Census Bureau, 2003).

FIGURE 2-17

Foreign born persons aged 15–44 in the United States, number and percent of the total population, 1900–2003. NOTE: These numbers reflect the civilian noninstitutionalized population aged 15–44 living in the United States; institutionalized (more...)

Among the 33.5 million foreign born persons living in the United States in 2003, the most common region of birth was Latin America (52.3 percent), followed by Asia (27.3 percent); Europe (14.2 percent); and “other areas,” including Africa, Oceania, and North America (6.2 percent) (U.S. Census Bureau, 2003). The majority of those born in Latin America were originally from Mexico.

Foreign born persons who become naturalized citizens of the United States are less likely to have household incomes below the federal poverty level than citizens born in the United States (13.2 percent of native U.S. citizens aged 18–44 were living below the poverty level in 2007, as compared with 9.1 percent of naturalized U.S. citizens) (see Figure 2-18 ). In contrast, a significantly higher proportion (20.4 percent in 2007) of foreign born persons aged 18–44 who are not citizens have household incomes below the poverty level (based on the 2007 American Community Survey Public Use Microdata Sample [ http://factfinder.census.gov/home/en/acs_pums_2007_1yr.html ]).

FIGURE 2-18

Poverty status of the population aged 18–44 by origin of birth and U.S. citizenship status, 2007. SOURCE: Based on the 2007 American Community Survey Public Use Microdata Sample (http://factfinder.census.gov/home/en/acs_pums_2007_1yr.html).

Undocumented Population

The number of undocumented individuals has grown significantly in the past 20 years. While U.S. government agencies do not count this population or define its demographic characteristics, others have provided estimates of its size. According to the Pew Hispanic Center, 11.9 million unauthorized migrants were residing in the United States in 2008, representing about one-third of the country’s foreign born and 4 percent of its total population (Pew Hispanic Center, 2008). This undocumented population was composed primarily of individuals from Mexico (59 percent). Approximately 22 percent were from other Latin American countries, 12 percent were from Asia, 4 percent had immigrated from Europe and Canada, and 4 percent were from elsewhere (Pew Hispanic Center, 2008). According to 2004 data, the undocumented population resided across the country, with 68 percent living in eight states: California, Texas, Florida, New York, Arizona, Illinois, New Jersey, and North Carolina (Pew Hispanic Center, 2008). Women aged 18–39 made up 29 percent (3 million) of undocumented persons, and children under 18 represented 17 percent (1.7 million) (Pew Hispanic Center, 2005).

Finding 2-3. Populations in greatest need of family planning services—low-income individuals and adolescents—have grown dramatically in the last 40 years in absolute numbers, in diversity, and in the complexity of their needs. Their demand for care is likely to continue to grow.

Changes in Technology and Costs

Since 1970, the number of contraceptive methods available to men and women has increased. The birth control pill, the IUD, the male condom, and sterilization were the primary methods available when Title X was enacted. Additional, more effective and safer methods have since become available, including improved oral contraceptives and IUDs, injectables, the contraceptive patch, and the contraceptive ring (see Table 2-1 for an overview of family planning methods and their effectiveness).

Summary of Contraceptive Efficacy: Percentage of Women Experiencing an Unintended Pregnancy During the First Year of Typical Use and the First Year of Perfect Use of Contraception and the Percentage Continuing Use at the End of the First Year, United (more...)

A large gap exists between typical and perfect use across contraceptive methods. Because there is less reliance on accurate use by the patient, long-term methods such as injectables and IUDs are more effective in practice than oral contraceptives or condoms at preventing pregnancy. Greater knowledge clearly is needed regarding the most effective ways to support successful method use for shorter-term contraceptives. More effective and long-term contraceptives are more expensive to provide. Comprehensive data on prices paid by providers and clinics for contraceptive supplies are limited, as confidentiality agreements with manufacturers prohibit the disclosure of this information (Sonfield et al., 2008a). However, the limited data available indicate that the patch and vaginal ring generally cost pub licly funded family planning agencies more ($11 and $26 per patient per cycle, respectively, in 2005) than the most commonly used oral contraceptives among Title X clients ($2 per cycle) (Lindberg et al., 2006).

In addition to the cost of contraceptive supplies, the cost of diagnostic tests has increased significantly. Federal regulation of clinical laboratories (Clinical Laboratory Improvement Amendments Act of 1988, P.L. 100-578) contributed to increased costs for Pap tests (Dailard, 1999). Costs are also greater for new technologies such as improved Pap smears for the detection of cervical cancer and human papillomavirus, DNA-based tests for chlamydia, and STD/HIV tests.

The Growing Evidence Base for Reproductive Health Services

Guidelines for reproductive health services issued by professional societies and organizations reflect advances in medical technology and increased understanding that various groups (such as those with low incomes and adolescents) have unique reproductive health and other health care needs. These guidelines are intended to disseminate current clinical and scientific advances. They are issued on a variety of topics by several organizations, most notably the American College of Obstetricians and Gynecologists. Other bodies issuing guidelines, policy statements, opinions, and statements regarding reproductive health services include the Society for Adolescent Medicine, the American Academy of Pediatrics, and WHO. Examples of guidelines that are relevant to family planning are listed in Box 2-1 . These guidelines represent the recommendations of experts in the field, and therefore should play an important role in shaping the delivery of family planning services, particularly to the extent that they have a sound evidence base.

Examples of Guidelines for Reproductive Health Care. American College of Obstetricians and Gynecologists 2008—Routine Human Immunodeficiency Virus Screening

Social and Cultural Factors

The many guidelines identified above reflect the recognition that effective family planning requires more than the existence of effective biomedical interventions. Family planning by nature requires close attention to social and cultural factors as well. Women and men may experience a number of sociocultural barriers to accessing family planning services, including distance to a family planning provider, difficulty in arranging transportation, limited days and hours of service operation, costs to receive services, long waiting times either to schedule an appointment or to be seen by a provider, poor quality of care, concerns about confidentiality, language barriers for those with limited English proficiency, lack of awareness of the availability of services, and perceived or real cost barriers (discussed further below) (Bertrand et al., 1995; Brindis et al., 2003).

Women in rural areas may have particular difficulty finding and obtaining family planning services (Frost et al., 2001). Some special populations, such as homeless women (Wenzel et al., 2001) and those who are incarcerated, may be especially likely to face access and cost barriers. Among teenagers, concern about confidentiality is the most significant barrier to obtaining family planning services (NRC, 2008). Additional barriers for adolescents may include community disapproval of their use of family planning, stigma related to obtaining contraceptives, lack of knowledge about the existence of publicly funded clinics, a perceived lack of affordable services, ambivalence, a history of sexual abuse, and fears of side effects (Frost and Kaeser, 1995; Brindis et al., 2003).

Medical barriers can also inhibit the use of family planning services. These barriers include service providers basing care decisions on outdated information or contraindications (IUDs, for example, are underutilized in the United States in part because of outdated information regarding the risks of this contraceptive method [Morgan, 2006]); process or scheduling impediments, such as physical exams that clients must undergo before receiving contraceptives; service provider qualifications or regulations that unnecessarily limit the types of personnel who can provide a service; provider bias toward a particular method or procedure; inappropriate management of side effects; and regulatory barriers (Bertrand et al., 1995).

Providing Culturally Appropriate Care

The increasing numbers of racial and ethnic minorities in the United States highlight the importance of providing culturally appropriate care to these populations. HHS’s Office of Minority Health has issued Standards for Culturally and Linguistically Appropriate Services (CLAS) in health care, which are directed primarily at health care organizations. Fourteen standards include culturally competent care, language access services, and organizational supports for cultural competence (see Box 2-2 ). Some of the standards are required for all recipients of federal funds (standards 4, 5, 6, and 7); others are recommended for adoption as mandates by federal, state, and national accrediting organizations (standards 1, 2, 3, 8, 9, 10, 11, 12, and 13); and one is suggested for health care organizations to adopt voluntarily (standard 14).

National Standards on Culturally and Linguistically Appropriate Services (CLAS). Health care organizations should ensure that patients/consumers receive from all staff members effective, understandable, and respectful care that is provided in a manner (more...)

Patient-centered care is also an important goal to improve the functioning of the health care system generally. It is particularly important for the delivery of care for underserved populations, including low-income individuals, the uninsured, immigrants, and racial and ethnic minorities (Silow-Carroll et al., 2006). Patient-centered care is defined as “providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions” (IOM, 2001, p. 40).

Beach and colleagues (2006, p. vii) note that proponents of “the patient-centeredness movement, [as well as] pioneers of cultural competence recognized that disparities in health care quality may result not only from cultural and other barriers between patients and health care providers but also between entire communities and health care systems.” Patient-centeredness and cultural competence represent different aspects of quality. Patient-centeredness focuses on better individualized care through improved relationships with the health care system, while the aim of cultural competence is to increase equity and reduce disparities in health care by focusing on people of color or those otherwise disadvantaged. The merging of these movements would help support the current push to develop “patient-centered medical homes” (Bergeson and Dean, 2006; The Patient Center Primary Care Collaborative, 2008) and provide “inter-professional education for collaborative patient-centered practice” (Health Canada, 2008).

In 2000, Approximately 17 percent of the U.S. population (47 million people) spoke a language other than English at home; 7 percent of the population (21 million Americans) had limited English proficiency (Flores et al., 2005; U.S. Census Bureau, 2008d). Meeting the needs of those who are limited English proficient is a challenge for the health care system.

Adequate communication between patients and their providers is essential to high-quality medical care. Many clinics have staff, including clini cians, who can converse with clients in their own language. In addition, evidence suggests that access to trained interpreters helps improve patient–provider communication, patient satisfaction, and health outcomes, and that quality of care is compromised when interpreters are not provided for those who need them (Flores, 2005). HHS’s Guidance Regarding Title VI Prohibition Against National Origin Discrimination Affecting Limited English Proficient Persons requires agencies that receive federal funding from HHS to ensure that such clients have access to the services provided by the agency (HHS, 2004b). An additional challenge that may affect adequate communication is a patient’s basic literacy in his or her native language. The cost of making interpreter services available and hiring bilingual staff may be a challenge for agencies.

Serving the Undocumented Population

The Personal Responsibility and Work Opportunity Act of 1996 limits federal Medicaid coverage for noncitizens. Coverage is limited to legal immigrants; no coverage is provided for the undocumented. (Legal immigrants must have arrived in the United States before 1996 or have resided here for at least 5 years.) However, hospitals must provide emergency medical services to the undocumented, including labor and delivery services (Kullgren, 2003). There have been no large-scale studies of births to undocumented women. However, a recent study describes birth outcomes for undocumented women in the state of Colorado (Reed et al., 2005). It indicates that, compared with the general population, undocumented mothers were younger, less educated, and more likely to be unmarried. While their infants had better birth outcomes (lower rates of low birth weight and preterm birth) than infants in the general population, they were at greater risk for certain abnormalities (including infant anemia, birth injury, fetal alcohol syndrome, hyaline membrane disease, seizures, and requirements for assisted ventilation) (Reed et al., 2005). Undocumented mothers also experienced higher-risk pregnancies and more complications of labor.

Many in the health care community argue that government’s failure to pay for primary and preventive health care services for undocumented noncitizens under the federal Medicaid program places a heavy burden on institutions that care for immigrant populations and also threatens the public’s health (Kullgren, 2003). The limitations on care mean that many immigrant women have no prenatal care and thus receive their first pregnancy-related medical attention when they are about to deliver. Such an absence of prenatal care may result in avoidable problems with a woman’s pregnancy or delivery and the health of the woman or her child. There are efforts at the state level to provide reproductive health services to undocumented populations. For example, the state of California recognizes the value of family planning care for this population and its cost-effectiveness, and uses state dollars to support this care when the federal government does not reimburse for these services under the state’s 1115 waiver.

Kullgren (2003) argues that this restriction of health services jeopardizes legal immigrants’ and citizens’ access to care by making it necessary to review immigration documents, thereby increasing administrative costs and reducing the efficiency-of-care provision. Moreover, failing to cover preventive care for the undocumented while requiring hospitals to provide them with emergency care, which is typically more expensive, prevents resources from being used in the most cost-effective manner. Finally, limiting access to care undermines efforts to control the spread of disease among the general population and compromises the ethical obligations of clinicians.

Finding 2-4. Providing the many effective methods of birth control now available requires careful attention to the complex social and cultural factors that affect access and utilization.

• FINANCING OF FAMILY PLANNING

Financing for reproductive health services comes from a variety of sources. As noted earlier, the proportion of public funds for family planning contributed by Title X has decreased over the last several decades. In 1980, Title X was the source of 44 percent ($162 million) of all public dollars spent for contraceptive services and supplies (AGI, 2000); by 2006, Title X accounted for just 12 percent ($215.3 million) of public funding (Sonfield et al., 2008a). Medicaid expenditures on family planning followed the opposite trajectory, accounting for 20 percent ($70 million) of total funding in 1980 (Gold et al., 2007) but increasing to 71 percent ($1.3 billion) by 2006 (Sonfield et al., 2008a).

In large measure, the growth of Medicaid’s role in family planning has been driven by state-initiated expansions of these services. To date, 27 states have sought and received permission from the Centers for Medicare and Medicaid Services, the federal agency that administers Medicaid, to expand eligibility under the program specifically for family planning (Guttmacher Institute, 2008a). While the expansion efforts in six states are limited and extend eligibility only to individuals who are otherwise losing Medicaid coverage, efforts in the remaining 20 states extend eligibility for family planning based solely on income, regardless of whether the individual has ever been enrolled in Medicaid. Most of these latter states set the income eligibility ceiling for Medicaid-covered family planning services at the same level used to determine eligibility for pregnancy-related care, generally at or near 200 percent of the federal poverty level—well above the usual state-set income ceilings (The Henry J. Kaiser Family Foundation, 2008).

State efforts to expand eligibility for family planning under Medicaid have infused new funding into the system. Two-thirds of the growth in family planning spending nationwide from 1994 to 2006 occurred in states that initiated broadly based Medicaid family planning expansions during that period (Sonfield et al., 2008a). As a result, those states have twice the resources per woman in need of programs in other states. 4 Between 1994 and 2001, family planning clinics in states with income-based waivers increased the number of clients served and also increased by one-quarter the proportion of women who received needed family planning care, while clinics in states without waivers experienced no increase at all (Frost et al., 2004). Although the expansion of Medicaid has infused new funds into family planning, tremendous unmet need remains. In 2005, while 12 percent of women (7.4 million) aged 15–44 were enrolled in Medicaid, 20.8 percent (12.9 million) remained uninsured (Guttmacher Institute, 2007). Title X offers critical services not offered under other insurance programs (see Chapter 3 ).

Some of the unmet need for family planning services may be attributable to increasing gaps in health insurance coverage. The increased cost of insurance has been affected by several factors, including technological advances in medicine, pharmaceutical development, and the aging population (Heffler et al., 2001). The growing cost of health insurance in turn has led to an increase in the number of people who are uninsured. In 1987, 12.9 percent of Americans lacked health insurance; that figure rose to 15.3 percent in 2007 (see Figure 2-19 ) (DeNavas-Walt et al., 2008). Among women aged 15–44, 20.8 percent were uninsured in 2005 (Guttmacher Institute, 2007).

FIGURE 2-19

Number of uninsured and uninsured rate, 1987–2007. a Implementation of Census 2000–based population controls occurred for the 2000Annual Social and Economic Supplement, which collected data for 1999. These estimates also reflect the results (more...)

A high proportion of the uninsured are young: 18 percent are below age 18 and 58 percent below age 34 (U.S. Census Bureau, 2008e). Adults aged 18–34 are disproportionately uninsured relative to their representation in the overall population. This is most likely because younger adults have lower incomes than older adults and are more likely to have jobs without health insurance benefits. Figure 2-20 presents the percentages of the uninsured and of the total population by age group among those below 100 percent of the federal poverty level. While children and the elderly have among the highest rates of poverty, they have the lowest rates of uninsurance because of targeted government programs, such as the State Children’s Health Insurance Program and Medicare. Thus the population most in need of family planning is least likely to have health insurance coverage.

FIGURE 2-20

Percentage of uninsured and total U.S. population below 100 percent of the federal poverty level (FPL), by age, 2007. SOURCE: U.S. Census Bureau, 2008e.

Those with full-time, year-round employment and an annual income greater than 200 percent of the federal poverty level are most likely to have health insurance (Custer and Ketsche, 2000). However, health insurance coverage has become less stable even for those who are employed (National Coalition on Health Care, 2009). Rapidly rising health insurance premiums have prevented many, particularly small, businesses from offering coverage to their employees (DeNavas-Walt et al., 2008). The increase in the number of uninsured has occurred to a large degree among working adults. The percentage of working adults ages 18 to 64 without health coverage was 20.2 percent in 2006 (DeNavas-Walt et al., 2008).

In addition to the population of uninsured Americans, millions of adults are underinsured: they have insurance, but their medical costs are high relative to their income. Being underinsured is defined as either (1) having out-of-pocket medical expenses for care amounting to 10 percent of income or more; (2) for low-income adults (below 200 percent of the federal poverty level), having medical expenses amounting to at least 5 percent of income; or (3) having deductibles equal to or exceeding 5 percent of income (Schoen et al., 2008). Schoen and colleagues estimate that in 2007, approximately 25 million people aged 19–64 were underinsured—a 60 percent increase since 2003. In total, the authors report that 42 percent of adults under age 65 are uninsured or underinsured.

Even those who have employer-based insurance may find that basic family planning services are not a covered benefit. In 2003, 7 percent of health plans did not cover an annual obstetrical and gynecologic visit, 12 percent did not cover oral contraceptives, 13 percent did not provide payment for sterilization, and 28 percent did not cover all major types of contraceptives. Health maintenance organizations were more likely to cover contraceptives and sterilization than were preferred provider organizations or point-of-service plans (Klerman, 2006). This situation has improved in recent years, and by 2008, 24 states required insurers that cover prescription drugs to also provide coverage for any FDA-approved contraceptive (National Conference of State Legislatures, 2009); however, it is important to recognize that state mandates do not apply to self-insured plans. Women find it particularly difficult to obtain coverage in the individual insurance market. They are frequently charged higher premiums than men and have difficulty finding affordable coverage for maternity care. They can also have difficulty finding affordable coverage for prescription drugs, such as contraceptives.

• CONCLUSIONS

The following conclusions emerged from the committee’s review of the literature on the role and history of family planning in the United States:

The provision of family planning services has important ben efits for the health and well-being of individuals, families, communi ties, and the nation as a whole.

Planning for families—helping people have children when they want to and avoid conception when they do not—is a critical social and public health goal.

The federal government has a responsibility to support the attainment of this goal. There is an ongoing need for public invest ment in family planning services, particularly for those who are low income or experience other barriers to care.

It should be noted that, despite the clear contributions of family planning to important public health goals, the public varies widely in its attitudes toward family planning and contraception. A large majority (86 percent) of the American public supports family planning services as part of health care for low-income women (where family planning is defined to exclude abortion) (Adamson et al., 2000). However, not everyone wants or believes in birth control. Some believe it should be available for married couples but not for unmarried people or teenagers for fear of encouraging sexual activity. Some religions, notably the Roman Catholic Church, oppose certain methods of contraception, although these strictures often are not followed by their congregants. Recent years have also seen vigorous political debates about emergency contraception (Plan B ® ), the rights of providers to refuse to offer care that violates their beliefs, and whether teens have a right to access reproductive health care without parental involvement.

By law, Title X funds cannot be used in programs that provide abortion services.

The total fertility rate reflects the total number of live births per 1,000 women aged 15–44.

Unpublished Guttmacher Institute tabulations.

• Cite this Page Institute of Medicine (US) Committee on a Comprehensive Review of the HHS Office of Family Planning Title X Program; Stith Butler A, Wright Clayton E, editors. A Review of the HHS Family Planning Program: Mission, Management, and Measurement of Results. Washington (DC): National Academies Press (US); 2009. 2, Overview of Family Planning in the United States.
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• Published: 02 July 2024

Family planning decision-making in relation to psychiatric disorders in women: a qualitative focus group study

• Shahenda A. I. H. Ahmad 1 ,
• Jorina Holtrop 1 ,
• Monique J. M. van den Eijnden 2 ,
• Nini H. Jonkman 3 ,
• Maria G. van Pampus 4 ,
• Odile A. van den Heuvel 5 , 6 , 7 ,
• Birit F. P. Broekman 1 , 5 , 8 &
• Noralie N. Schonewille 1 , 5 , 8  

Reproductive Health volume  21 , Article number:  96 ( 2024 ) Cite this article

Metrics details

Recent studies revealed an elevated likelihood of unintended pregnancies among women with psychiatric disorders compared to their counterparts without such vulnerability. Despite the importance of understanding family planning decision-making in this group, qualitative inquiries are lacking. This study explored family planning decisions among women with psychiatric disorders.

Utilizing a qualitative approach, three focus group discussions were conducted with purposive sampling: women with a history of unintended pregnancies ( N  = 3), women without children ( N  = 5), and women with a history of intended pregnancies ( N  = 9), all of whom had self-reported psychiatric disorders. Using thematic framework analysis, we investigated the themes “Shadow of the past,” reflecting past experiences, and “Shadow of the future,” reflecting future imaginaries, building upon the existing “Narrative Framework.”

The Narrative Framework formed the foundation for understanding family planning among women with psychiatric disorders. The retrospective dimension of focus group discussions provided opportunities for reflective narratives on sensitive topics, revealing emotions of regret, grief and relief. Childhood trauma, adverse events, and inadequate parenting enriched the "Shadow of the past". The “Shadow of the present” was identified as a novel theme, addressing awareness of psychiatric disorders and emotions toward psychiatric stability. Social influences, stigma, and concerns about transmitting psychiatric disorders shaped future imaginaries in the shadow of the future.

Conclusions

This study enlightens how family planning decision-making in women with psychiatric disorders might be complex, as marked by the enduring impact of past experiences and societal influences in this sample. These nuanced insights underscore the necessity for tailored support for women with psychiatric disorders.

Plain English Summary

Recent studies show that women with psychiatric disorders are more likely to experience unintended pregnancies. However, the underlying reasons are not fully understood. Understanding those reasons is important to provide better healthcare. Our study explored how women with psychiatric disorders make decisions about family planning.

We had conversations with different groups of women—women with unintended pregnancies, women without children, and women with intended pregnancies—through focus group discussions. We partnered with the Dutch mental health organization MIND to capture diverse opinions. Key themes and categories in the discussions were identified and organized.

We found four main themes: "Shadow of the past" showed how past events, trauma, and lack of knowledge about parenting affect family planning. "Shadow of the present" revealed different feelings about family planning, the importance of the awareness of psychiatric disorders, and uncertainty about decisions. "Shadow of the future" included thoughts about becoming a mother, the impact of social influences, and concerns about passing on psychiatric disorders. "Reflections on the decision" showed how psychiatric disorders, experiences with motherhood, and feelings of regret, grief and relief had an influence on family planning decisions.

In conclusion, our study highlighted the complexity of family planning decisions for women with psychiatric disorders. Past experiences and societal influences, like stigma, play a big role. These insights show the need for personalized family planning support for women with psychiatric disorders.

Peer Review reports

Literature suggests that psychiatric disorders and family planning decision-making are related. Recent studies revealed that women with psychiatric disorders more often experience unintended pregnancies compared to counterparts without such vulnerability [ 1 , 2 , 3 ]. Moreover, childlessness is associated with having chronic illnesses, among which are psychiatric illnesses [ 4 , 5 ]. However, there is limited knowledge about contributing factors that shape family planning decision-making in women with psychiatric disorders [ 6 , 7 ].

Family planning decision-making defines the process through which individuals make choices about whether to have children, when to have them, and how many children to have [ 8 ]. It involves contemplating economic, social, cultural, and health-related factors [ 9 ]. Understanding family planning decision-making is fundamental for estimating the need for contraception, predicting reproductive patterns, and developing programs aimed at preventing unintended pregnancies [ 10 ]. The use of (emergency) contraceptives [ 11 ], improved accessibility to abortion services [ 12 ], and increased understanding of risk factors [ 11 , 13 , 14 ] have reduced unintended pregnancies. However, in 2010–2019, more than half of all pregnancies worldwide were still unintended [ 15 ].

Unintended pregnancies are particularly common among women with psychiatric disorders, reaching rates of up to 65% [ 5 , 16 ]. Aside from difficulties with planning, women with psychiatric disorders face elevated risks of psychiatric problems after pregnancy, leading to additional risks for adverse outcomes for both mothers and children [ 17 , 18 , 19 , 20 ]. The preconception phase is crucial for women planning to conceive by offering an opportunity to enhance nutrition and lifestyle choices to minimize maternal and child health risks [ 21 ]. Pregnancy planning is especially important for women with psychiatric disorders because they may need to make medication adjustments, take precautionary measures regarding the relapse of psychiatric disorders, and optimize mother–child attachment [ 17 , 18 , 19 , 20 ]. Indeed, women with unintended pregnancies encounter significant additional challenges due to the absence of the pregnancy planning phase, such as limited access to prenatal care, financial strain, and emotional stress [ 1 ].

Several frameworks exist for describing the factors that shape family planning decision-making [ 22 , 23 , 24 , 25 , 26 , 27 , 28 ]. However, most frameworks are past-driven and focus predominantly on cognitive factors [ 29 ]. We hypothesize that these frameworks are inadequate for capturing the uncertainty about the future faced by women with psychiatric disorders. The “Narrative Framework” provides a different perspective on family planning decision-making, particularly amid the amplified uncertainty and stress of the COVID-19 pandemic. It integrates past experiences, psychological predispositions, and socioeconomic factors, termed the “Shadow of the past,” alongside expectations, future imaginaries, and future narratives, termed the “Shadow of the future.” This framework captures decision-making processes by including these elements.

The aim of this qualitative study was to delve into the family planning experiences of women with psychiatric disorders (history of psychiatric disorder and/or current diagnosis). The “Narrative Framework” will provide a foundation for structuring the themes involved in the decision-making process [ 29 ]. The results of this study will contribute to knowledge about family planning decision-making in women with psychiatric disorders.

Materials and methods

Study design.

A qualitative study of experiences with family planning in women with self-reported psychiatric disorder(s) was conducted. We adopted a constructionist approach in which we acknowledged the role of society in shaping perspectives on family planning decision-making [ 30 ]. Therefore, focus group discussions were selected as the method of data collection because participants themselves can represent societal influences on each other’s perspectives.

Participant recruitment

Seventeen volunteers of the Dutch mental health umbrella organization MIND with self-reported psychiatric disorders were included. Participants were recruited from a sample of survey respondents ( n  = 378) from MIND [ 5 ]. The survey was conducted to collect quantitative and qualitative information about family planning. Participants were given the option to provide their email address if they wished to participate in a focus group discussion. Both men and women participated in the survey, but to address the current research question, only women were eligible ( n  = 17). Prior to participating in the focus groups, and after explanation of the study, all participants signed an informed consent form. Focus group discussion 1 ( n  = 3) consisted of women with a history of (initially) unintended pregnancies. Women who experienced an unintended pregnancy but did not remain pregnant (due to miscarriage or abortion) also participated in focus group discussion 1. Focus group discussion 2 ( n  = 5) consisted of women who did not have children and who had not been pregnant prior to participation. Focus group discussion 3 ( n  = 9) consisted of women with a history of intended pregnancies resulting in one or more children. Purposeful sampling created homogeneous focus group discussions regarding pregnancy intentions, ultimately benefiting the willingness of women to engage in discussions [ 31 ]. Due to the anonymous nature of the survey, it was unclear prior to the focus group discussions which psychiatric disorders the participants had been diagnosed with. Medical records were inaccessible; participants disclosed their psychiatric diagnoses during the focus group discussions. Figure  1 provides an overview of participant inclusion.

Flowchart of participant inclusion. Legend: this figure outlines the participant selection process for the study

Data collection and storage

Three focus group discussions were held at a central location in the Netherlands (organization MIND, Amersfoort, The Netherlands) between October and November 2021. The interview guide was created based on answers to an earlier survey and consisted of two main research questions, complemented by specific questions per focus group discussion: 1) How does your (history with) psychiatric disorder influence your desire for children? and 2) What is your experience discussing family planning with your mental health professional? The interview guide for each focus group is provided in Additional file 1 . The focus group discussions were held in Dutch and lasted between 120 and 155 min (median duration 123 min). A researcher with lived experience with perinatal mental health problems [ME] led the discussions, [NS] was present to observe and take field notes. Digital research data, including audio recordings and ad verbatim transcripts of the focus group discussions, were pseudonymized and stored in a password-protected file on a secure server of the hospital (OLVG). Paper consent forms are stored in a locked research cabinet of the same hospital. This process ensures that the data is securely stored, and that participants’ anonymity is protected throughout the study.

Data analysis

The focus group discussions were audio-recorded and transcribed ad-verbatim. The transcripts were converted to ATLAS.ti v9 for data analysis. Table 1 summarizes the steps performed during the analysis.

Methodological integrity

The research team, with backgrounds in psychiatry, obstetrics, neurosciences, and health behavior, ensured a foundation for conducting a nuanced and in-depth qualitative analysis of family planning decision-making, thereby incorporating triangulation. The epistemological approach was clearly stated and closely adhered to, which helped to align the research question with the applied methods. The conclusions were grounded in the evidence through the inclusion of quotations. Providing contextual information, such as the study setting and participant details, enhanced the comprehensibility of the results. Unlike a conventional consensus-reaching method, different interpretations were integrated into the findings to enrich the data analysis process. Utilizing methods of researcher reflexivity, such as memos and field notes, contributed to a reflexive and transparent analytical process. Reflexivity was considered throughout the process, acknowledging that [ME]’s background with lived experience with perinatal mental health problems may have influenced the discussions and interaction with participants, potentially fostering a more open and empathetic environment.

Information about the demographics of the participants ( n  = 17) is reported in Table  2 . Ages ranged between 24 and 70 years, with a median age of 57 years. All women had a Dutch background. The participants exhibited diverse occupational backgrounds, with six (35%) declaring themselves unfit for employment for reasons related to their psychiatric disorder(s). A history of pregnancy and psychiatric disorder(s) are described in Table  3 . Mood disorders were the predominant psychiatric disorder ( n  = 10), manifesting across all focus group discussions. Subsequently, trauma-related disorders ( n  = 8) and anxiety disorders ( n  = 6) were the most prevalent.

Our findings are presented within the context of an adapted version of the “Narrative Framework”. While the original framework highlights “ Shadow of the past ” and “ Shadow of the future ” as primary themes, our findings expanded this framework by incorporating two additional themes, namely “ Reflections on the decision ” and “ Shadow of the present ”, which were specifically tailored to our study population. This adaptation is illustrated in Fig.  2 . Each theme includes categories supported by quotations translated into English. Additional file 2 provides the original Dutch quotations.

Framework of family planning decision-making in women with psychiatric disorders. Legend: this figure shows the framework of family planning decision-making with part ( a ) illustrating the Narrative Framework and part ( b ) illustrating the adapted version tailored to women with psychiatric disorders. For each theme categories are listed on the right side of figure b. This figure is reproduced with permission from “Guetto R, Bazzani G, Vignoli D (2022) Narratives of the future and fertility decision-making in uncertain times. An application to the COVID-19 pandemic. Vienna Yearb Popul Res 20:223–260. https://www.jstor.org/stable/27222579 ”

Reflections on the decision

The retrospective nature of the focus group discussions allowed 17 women to delve into reflective narratives concerning sensitive topics regarding their psychiatric disorder(s) and family planning decision-making. The importance of these reflections, amplified by their emotionally charged nature, justifies the creation of a dedicated theme to them, as they were not yet addressed by the Narrative Framework [ 29 ]. Table 4  provides several quotations belonging to this theme.

Regret, grief and relief

Reflections on family planning decisions revealed a mix of emotions experienced by the participants. Participants without children often felt grief, yet some also found relief in their decision. This illustrates the complexity of emotions within individuals. The impact of participants' psychiatric disorder(s) on family planning was central in all focus group discussions. For some women, challenges in parenting due to personal circumstances brought feelings of grief and regret. However, positive reflections on motherhood also emerged, particularly from mothers who found fulfillment in motherhood despite initially unintended pregnancies.

Shadow of the past

Originally, the shadow of the past reflected the impact of life experiences, psychological predispositions, and socioeconomic factors on an individual’s decision about having children [ 29 ]. In our sample, this theme was enriched by the interplay between personal experiences in the women’s upbringing, the perceived parenting skills of their parents, and how those women respond to these experiences. Quotations are provided in Table  5 .

(Childhood) trauma and adverse life events

The participants of all focus group discussions spontaneously shared (childhood) trauma and adverse life events when asked about their family planning decision-making, revealing their perceived connection between these experiences and their family planning considerations. They believed that their upbringing impacted their decisions. Lived experience with trauma affected perspectives on family planning differently: some women were motivated to move past their childhood trauma by building a (better) family for themselves by having a child, while other women refrained from having children because of their adverse life events.

Inadequate parenting

This category showed how reflections on their own upbringing, specifically on their parents' parenting skills or the lack thereof, can influence women’s perspectives on having children. The decision to have children became a personal and reflective process shaped by the desire to replicate positive aspects of one's upbringing or breaking away from negative patterns and challenges.

Shadow of the present

In the Narrative Framework [ 29 ], (socioeconomic) status and personal perceptions bridged the gap between the shadow of the past and the shadow of the future. While socioeconomic factors such as financial considerations or the availability of a (suitable) partner contributed to the decision-making process of the participants, personal perceptions of their psychiatric disorder(s) were pertinent. This led to the extension of the framework with a novel theme: the shadow of the present. This theme incorporates categories relevant to our sample, including awareness of psychiatric disorder(s) and psychiatric stability, which were previously unaddressed in empirical models of family planning (Table  6 ).

Awareness of psychiatric disorder(s)

Awareness of psychiatric disorder(s) at the time of the decision was a recurrent theme among participants with children. Some participants mentioned the impact of not being aware of their psychiatric disorder at the time of the decision, indicating that they would have made different choices if they had been aware of the diagnosis earlier. For some of the participants, the diagnosis was liberating, explaining the challenges of motherhood.

Emotions toward psychiatric stability

Psychiatric stability at the time of decision-making was mentioned as one of the factors influencing choices. For some individuals, the stability of symptoms presented an opportunity to pursue parenthood, while for others, psychiatric stability did not hold the same level of deliberative weight. Diverse attitudes toward this issue highlight how some participants experienced resilience by learning from previous experiences, while others did not.

Perceptions of desire for children

A spectrum of diverse viewpoints on the desire for children was described as a complex array of thoughts, emotions, and perspectives that concurrently coexist, contributing to a fluctuating experience over time and giving rise to feelings of ambivalence and uncertainty. As one participant expressed “childbearing desire is not 100% yes or 100% no,” highlighting nuanced attitudes toward motherhood and childlessness. While ‘perceptions’ were originally emphasized as personal interpretations of past and current experiences [ 29 ] our participants argued that viewpoints on the desire for children change over time.

Opportunities and constraints for childbearing plans resemble the (socioeconomic) status element of the Narrative Framework [ 29 ]. This category includes several factors mentioned as reasons whether to have a child, including maternal age, financial stability or having a (stable) partner.

Shadow of the future

The shadow of the future emphasizes the importance of expectations and personal narratives in uncertain situations [ 29 ]. Our study shows how social influences, stigma around mental health, and uncertainty about passing on a condition can influence future imaginaries (Table  7 ).

Social influences

During the focus group discussions, the social system’s impact was heavily discussed. Many expressed frustrations with the lack of support from their social environment for their desire for children, leading to uncertainty about their decision. While personal visions of the future can be influenced by society, personal visions may also differ, thereby placing social influences in the shadow of the future [ 29 ]. Participants’ experiences with stigma due to their psychiatric disorder(s) often leaned toward deciding against having children.

Transmission of psychiatric disorder(s)

The transgenerational transmission of psychiatric disorder(s) to children was a key theme among participants, as discussed in all focus group discussions. Many participants were conscious of the risk of passing their condition to their offspring, which influenced their decisions against having children or causing regret if transmission occurred. Awareness of the challenges varied, with some participants doubting the possibility of breaking the transmission cycle, while others remained hopeful.

Prospect of motherhood

Insecurities about motherhood were deliberated. Participants felt incapable of raising a child for varying reasons, such as difficulty combining motherhood and having psychiatric symptoms. Other participants could rationalize this by referring to ‘other mothers’ without psychiatric disorder(s) who make parenting mistakes. Another participant stated that although her illness was heritable, it also aided her in supporting her child.

Key findings

This study has provided insights into family planning decision-making among women with psychiatric disorders by extending the Narrative Framework [ 29 ] with two themes. First, we dedicated a theme to reflections on decision-making, which encompasses emotions of grief, relief and regret. Second, we introduced the shadow of the present, which emphasized the impact of psychiatric disorders on decision-making by considering awareness of psychiatric disorders and psychiatric stability. Furthermore, the shadows of the past and future were broadened by integrating categories tailored to women with psychiatric disorders, including trauma, adverse life events, and social influences.

Interpretation in relation to literature

The retrospective nature of the focus group discussions allowed us to reflect on the participants’ family planning decisions, where the emotions of regret, grief and relief emerged. Regret over the delay in childbearing decisions has been described before in couples seeking fertility treatments [ 32 ]. Like our participants, voluntary childless women reported relief, feeling financially unburdened compared to their parenting peers, and enjoying various forms of freedom. However, they also faced stigmatization, and some expressed that their decision was influenced by their concern about potentially transmitting diseases to their children [ 33 ]. We hypothesize that cognitive dissonance, influenced by the type of psychiatric disorder, may contribute to regret in individuals as they grapple with conflicting thoughts and emotions [ 34 ].

Our study enhanced the shadow of the past with insights from 17 women with psychiatric disorder(s), shedding light on the impact of (childhood) trauma and adverse experiences on family planning decision-making. Previous research has shown an increased risk of unintended pregnancy in mothers with adverse childhood experiences [ 35 ]. Furthermore, women with unintended pregnancies reported more psychosocial problems [ 36 ]. Together with our findings, these findings imply that past experiences (related to psychiatric disorders) play a significant role in shaping family planning decisions and outcomes.

In the shadow of the present, we expanded upon the existing themes of (socioeconomic) status and perceptions [ 29 ]. Various enablers and constraints in the decision-making process surfaced, aligning with descriptions in other frameworks [ 22 , 23 , 25 , 26 ], and are therefore not unique to our population. The personal perceptions of our participants were portrayed as a complex array of emotions and thoughts, contributing to a fluctuating experience of family planning marked by ambivalence and uncertainty. Ambivalence toward motherhood in women with severe mental illness has been previously documented [ 37 ]. However, our study focused primarily on ambivalence in decision-making. Surprisingly, participants did not bring up the issue of psychoactive medication usage in relation to family planning. Although most psychotropic medication can be continued during pregnancy, some psychoactive medications can be teratogenic and should be used with caution [ 38 , 39 ]. Also, previous studies showed that (pregnant) women with psychiatric disorders contemplate their medication usage [ 40 ]. Overall, our findings suggest that family planning decision-making is more complex in women with psychiatric disorders than in those without psychiatric disorders, consistent with prior research [ 41 ]. A potential explanation lies in additional factors influencing the decision, such as awareness of the psychiatric disorder and psychiatric stability at the time of the decision.

The notion that social influences, including stigma, shape the shadow of the future through uncertainty is not limited to women with psychiatric disorders. A study on disabled women’s childbirth experiences revealed diverse reactions from their surroundings, leading to heightened fears and a sense of diminished control over their childbirth experiences [ 42 ]. Despite the difference in study populations, similar findings indicate a convergence in the experiences of women. While uncertainty about the future during the COVID-19 pandemic has been noted among the general population [ 28 , 29 ], we specifically examined uncertainty regarding stigma surrounding psychiatric disorders and their potential transmission. Participants' narratives may be influenced by maladaptive prospection seen in persons with psychiatric disorders such as depression and anxiety, which distorts future expectations [ 43 ]. Additionally, the potential of transmitting psychiatric disorders to their children might have intensified feelings of uncertainty about the future and thus made the decision-making process more challenging. This phenomenon is not novel and has been documented in various other hereditary diseases [ 44 , 45 ]. The actual extent of inheritance in psychiatric disorders significantly influences this dynamic. For instance, the estimated heritability for psychotic and neurodevelopmental disorders ranges from 74–85%, whereas for mood and anxiety disorders, it ranges between 37–58% [ 46 ]. The high heritability rate of these disorders aligns with the uncertainty as described in the narratives.

Strengths and limitations

This study provides a nuanced exploration of family planning decision-making in 17 women with psychiatric disorders. The transdiagnostic approach sheds light on overarching issues that were experienced. The use of focus group discussions captured societal dynamics and fostered an interactive environment for reflective perspectives [ 47 , 48 ]. Thematic framework analysis offered a structured examination of identified themes [ 29 ]. However, limitations include the small group of women with unintended pregnancies ( n  = 3) and the retrospective nature of reflections, potentially introducing recall bias [ 49 , 50 ]. Moreover, it is important to acknowledge the wide age range of participants, as this may affect the consistency of the data. We addressed the potential recall bias by incorporating the reflective nature of our framework and acknowledging its influence on the findings. The iterative process did not include respondent validation of the findings. To mitigate potential misinterpretations, we involved a researcher with lived experience with perinatal mental health problems.

Furthermore, the utilization of focus groups may restrict the depth of individual analyses. Although all our participants had been known with a psychiatric disorder according to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), we hypothesize that within the diverse array of disorders represented, each psychiatric disorder may have impacted family planning decisions in distinct ways. Additionally, the focus groups did not allow for an in-depth examination of the individual socioeconomic status of the women and how this influenced their reproductive desires. Given the established importance of socioeconomic status in the context of unintended pregnancies [ 14 ], it is crucial to consider this factor in individual sessions. Opting for individual interviews could provide a more comprehensive exploration.

Suggestions for future research

Future research could benefit from longitudinal and prospective study designs, allowing examination of family planning decision-making in women with psychiatric disorders considering the fluctuating aspect of family planning. Distinguishing between various psychiatric disorders and their unique impact on decision-making could provide a more nuanced understanding, possibly through individual in-depth interviews. As women with unintended pregnancies and psychiatric disorders may experience more challenges with family planning decision-making, it would be interesting to include these women in future research.

Our study sheds light on family planning decisions among women with psychiatric disorders. Like women without psychiatric disorders, past experiences, socioeconomic status, and perceptions on the desire for children shape decision-making. We found that traumatic events have a lasting impact on family planning choices. Stigma, uncertainty about parenting skills, and concerns about transmitting psychiatric disorder(s) contribute to ambivalence about having children. Feelings of regret, grief and relief regarding these decisions reflect the influence of psychiatric disorders. Our results emphasize that women with psychiatric disorders deserve support tailored to their needs, e.g. the possibility to discuss family planning at perinatal mental health facilities. Moreover, healthcare professionals could consider offering ongoing emotional support beyond the reproductive phase to those reflecting on their family planning decisions.

Availability of data and materials

The dataset(s) supporting the conclusions of this article are included within the article and the additional files. The original data are available upon reasonable request.

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Acknowledgements

We express our gratitude to all the women who participated in the focus group discussions. Additionally, we extend our appreciation to Yente Dubbeldam for her contribution to data cleaning and analysis.

This research was funded by ZonMw, grant number 554002007.

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Shahenda A. I. H. Ahmad, Jorina Holtrop, Birit F. P. Broekman & Noralie N. Schonewille

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Monique J. M. van den Eijnden

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Nini H. Jonkman

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Maria G. van Pampus

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Odile A. van den Heuvel, Birit F. P. Broekman & Noralie N. Schonewille

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Contributions

Conceptualization, funding, design and methodology, ME, BB and NS; focus group discussions, ME and NS; study and analytic design advice, NJ; formal analysis, all authors (SA, JH, ME, NJ, MP, OH, BB, NS); original draft preparation, SA and JH; review and editing, all authors (SA, JH, ME, NJ, MP, OH, BB, NS); visualization, SA; supervision, BB and NS.

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Correspondence to Noralie N. Schonewille .

Ethics declarations

Ethics approval and consent to participate.

The study was conducted in accordance with the Declaration of Helsinki and declared as not part of the Human Subjects Research Law by Medical Ethics Research Committee United Nieuwegein, protocol code W21.215, date of declaration 24–09-2021. Local approval was granted by OLVG Hospital. Written informed consent was obtained from all the subjects involved in the focus group discussions.

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All subjects involved in the focus groups have provided consent for publication.

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The authors declare that they have no competing interests.

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Additional file 1: this file provides the interview guides for the three focus group discussions., additional file 2: this file provides the original quotations for each theme per category in dutch language., rights and permissions.

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Ahmad, S.A.I.H., Holtrop, J., van den Eijnden, M.J.M. et al. Family planning decision-making in relation to psychiatric disorders in women: a qualitative focus group study. Reprod Health 21 , 96 (2024). https://doi.org/10.1186/s12978-024-01836-8

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DOI : https://doi.org/10.1186/s12978-024-01836-8

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The Quality of Family Planning Services in the United States: Findings from a Literature Review

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Do family planning programs affect fertility preferences? A literature review

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• 1 Population Studies Center, University of Michigan, Ann Arbor 48104-2590, USA.
• PMID: 9097381

A literature review finds few studies about whether family planning programs have reduced fertility preferences. The strong and surprising evidence from Matlab, Bangladesh, demonstrated that this intensive program did not decrease preferences; however, it did crystallize latent demand for fewer children, resulting in a demand for contraception. One cross-national multivariate study was consistent with this finding. A few intracountry multivariate studies found small program effects, decreasing the number of children that couples want. An intensive multimethod study in India found plausible larger effects. Most studies of program media effects are flawed by possible selection bias, but one longitudinal study avoids this pitfall and finds large effects for one country. Program feedback effects are plausible but not yet demonstrated empirically. The effects of a coercive program are plausible, at least in China, but not definitively demonstrated. Several promising unpublished studies may strengthen the case for program effects in reducing fertility preferences, now often based on plausible but not conclusive evidence. Stronger generalizations require better studies of a wider range of locations.

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