Perceptions of barriers to effective family planning services among women with disabilities

Women with disabilities have the same rights as women without disabilities to prevent unintended pregnancy, yet little is known about their experiences in accessing family planning methods.

Objective:

This qualitative descriptive study explored perceptions of barriers to effective family planning services among women with disabilities.

Method:

Semi-structured, open-ended interviews were conducted with 31 women with diverse disabilities as part of a larger study investigating risks and facilitators of unintended pregnancy among women with disabilities across the United States.

Results:

Analysis revealed multiple barriers experienced by women with disabilities in accessing effective family planning services needed to prevent unintended pregnancy. Barriers included physical or system barriers, financial limitations, and nonresponsive healthcare providers. Women also identified difficulties in finding appropriate family planning methods, both related and unrelated to disability.

Conclusions:

This is the first in-depth exploration of barriers to accessing family planning services and challenges to finding effective family planning options among women with disabilities. The findings underscore the need for targeted interventions, improved provider training, and policy changes to optimize reproductive healthcare, improve access to family planning services, and prevent unintended pregnancy among women of childbearing age with diverse disabilities.

The rate of unintended pregnancy is an important benchmark of a population’s reproductive health as it reflects the ability of women and couples to achieve their reproductive goals. 1 Nearly 45% of pregnancies in the United States (U.S.) are unintended 2 , a rate substantially higher than many other industrialized nations. 3 Women experiencing unintended pregnancies are more likely to have delayed initiation of prenatal care 4-6 , higher rates of smoking and illicit substance use during pregnancy 7-9 , and an increased risk of adverse birth outcomes, including premature and low birthweight infants, as compared to women experiencing intended pregnancies. 10-12 Research has demonstrated significant disparities in rates of unintended pregnancy by socioeconomic status and race and ethnicity; low socioeconomic status, Black and Hispanic women are at a significantly higher risk of experiencing an unintended pregnancy as compared to White women and individuals with higher incomes in the U.S. 1,2

Less studied is unintended pregnancy among women living with disabilities. Nearly 12% of U.S. women of childbearing age live with a disability. 13 Women with disabilities are increasingly becoming pregnant, and may be as likely to become pregnant as women without disabilities. 5 Further, women with disabilities are as likely to report wanting to have a child as women without disabilities, yet less certain about future pregnancy intentions. 15 Few studies have examined unintended pregnancy among women with disabilities. Using Pregnancy Risk Assessment and Monitoring System (PRAMS) data from Rhode Island, researchers found women with disabilities were significantly less likely to intend to become pregnant than women without disability. 9 More recently, using data from the 2011-2013 and 2013-2015 waves of the National Survey of Family Growth (NSFG), significant differences in pregnancy intention were noted by disability status. Specifically, a higher proportion of pregnancies were unintended among women with disabilities as compared to women without disabilities (i.e., 53% vs. 36%, respectively), and women reporting an independent living disability had the highest proportion of unintended pregnancies (62%). An examination by disability type revealed significantly higher adjusted odds of unintended pregnancies among women with hearing disability, cognitive disability and independent living disability than for pregnancies among women without disabilities (aOR 1.5-1.9). 17 Yet, the reason for these disparities remains largely unknown. Using NSFG data, researchers examined population-based estimates of use of family planning services among women of reproductive age. Findings revealed women with disabilities were less likely to receive any family planning services than women without disabilities, and these disparities were most pronounced in women reporting low education, low income, and unemployment. Additional analyses revealed among women ages 25-44, those living with disabilities were significantly less likely to have received a method of birth control, or birth control counseling in the previous twelve months as compared to those without a disability. 18

There is a growing body of literature demonstrating substantial inequities in the quality of healthcare received, including experiencing stigma and bias, among women with disabilities. Much of this literature is focused on experiences during pregnancy with less recognition of the critical importance of the preconception period and its influence on subsequent pregnancy outcomes. The quality of care women with disabilities experience, outside of pregnancy care, may be associated with an increased risk of unintended pregnancy. In a qualitative study of women living with spina bifida, women reported having a poor understanding of their pregnancy potential, in part due to insufficient information from healthcare providers. 19 Another qualitative study, focused on women living with disabilities who experienced reproductive coercion, found that health care providers rarely screened for violence 20 , a known risk factor for unintended pregnancy. 20,21 Attitudes and practices of neurology providers regarding sexual and reproductive healthcare for their adolescent and young adult patients with epilepsy were recently explored, with results demonstrating wide variability among practitioners. With regard to reproductive goals, one physician noted telling a patient not to “…get pregnant until you’re like 30” and another physician describing telling women not to get pregnant until they are transferred to adult neurology and then the discussion can ensue regarding reproductive goals. 22 Ensuring access to effective family planning methods is critical to preventing unintended pregnancy, particularly for women with disabilities who may face unique barriers to care. Thus, the purpose of the current study was to explore perceptions of barriers to family planning services among women living with disabilities.

METHODS

The current study reports the qualitative findings of a mixed method parent study that examined risks and protective factors for unintended pregnancy among US women living with diverse disabilities, including those with hearing disability, vision disability, cognitive disability mobility disability, self-care disability, and independent living disability. The quantitative aims of the parent study utilized data from two waves of the NSFG, while the qualitative aim explored women’s experiences with reproductive health care, as well as the context of their unintended pregnancies. Eligibility for participation in the qualitative aim, reported here, included women between the ages of 18 and 44 who experienced an unintended pregnancy after the onset of a disability, experienced an unintended pregnancy within the prior two years, and reported the presence of a disability for at least two years at the time of data collection. Women were excluded if they were unable to answer simple questions demonstrative of understanding of the informed consent, did not understand or express themselves in English or American Sign Language, lived in a nursing home or other institution, reported severe misuse of alcohol or other drugs, or expressed suicidal ideation. The study was approved by the University of Virginia Institutional Review Board.

Given our goal to explore the experiences of women living with diverse disabilities across the US, we used multiple dissemination methods to reach our population of interest. Primary dissemination methods included social media, including Facebook groups and individual social media platforms of individuals actively engaged in the disability community, disability-related websites, and community-based organizations. Our study included a community advisory board (CAB) comprised of nine individuals who identified as women living with diverse disabilities, living in different areas of the US. Our CAB was instrumental in our recruitment efforts, using their well-established networks to disseminate study-related information.

The qualitative aim of the parent study included 31 women living with a disability. Four women were excluded due to having a planned pregnancy (n=1) or the onset of a disability after experiencing an unintended pregnancy (n=3). The individual, in-depth interviews were guided by a semi-structured interview guide which was developed by the study team in conjunction with our CAB. The interview guide drew upon findings generated from quantitative findings in the parent study. 38-40 Areas of exploration included participants’ knowledge of family planning options, health care providers’ advice around family planning, and their perceptions on unique risks for experiencing an unintended pregnancy.

Data collection

The first author, who has extensive clinical and research experience working with women with disabilities, conducted all of the interviews in English over the phone, and three participants used telephone relay services for interview completion. Phone interviews were necessary given this was a national sample. On average, the interviews lasted one hour. Prior to beginning each interview, participants were reminded that they could skip or refuse to answer any questions. For participants who agreed to have interviews recorded the interviewer reminded them that the recording be turned off during any portion of the interview. Additionally, each participant was given a code word prior to the start of the interview that they could use if they felt that their privacy was in jeopardy given the sensitive nature of the topic. Our safety plan included thanking the participant for her time and ending the call with the understanding that the participant would re-contact the interviewer at her convenience when her privacy could be maintained if the code word was used. This was not necessary in any of the interviews conducted. Three participants asked that their individual interviews not be recorded though allowed ample time for the interviewer to record comprehensive notes.

Data analysis

Twenty eight of the 31 interviews were audio-recorded in full and transcribed verbatim. The three remaining interviews included comprehensive notes regarding the interview, including direct quotes where appropriate. ATLAS.it software was used to assist in the organization and management of data. Two authors (JA, TB) analyzed transcripts using a thematic analysis approach, which started with an immersion in the participants’ experiences, and the development and refinement of a codebook, which included deductive codes derived from the interview guide as well as inductive codes constructed from the transcripts. 23,24 To ensure consistency of findings, an audit trail was maintained for transparency in the analytic phase. During regular meetings with the study team, codes were collapsed, refined, and removed, as appropriate, and any discrepancies in coding were discussed and resolved via consensus. The first two authors organized interview text pertaining to the experience of unintended pregnancy into themes and subthemes, and matrix analysis was used to identify similarities and differences among participants. 25 The entire study team reviewed and refined themes and subthemes during research meetings. As a final step, the first author reviewed each transcript to ensure that appropriate coded exemplars were included in the analysis, and that appropriate themes had been identified.

Using this thematic analysis approach, we identified two major themes including barriers to accessing family planning, and the unique considerations regarding family planning for women living with disabilities. With regards to barriers to accessing family planning, subthemes included barriers related to physical or system, financial, and healthcare provider.

RESULTS

Participant characteristics

The sociodemographic characteristics of the participants are shown in Table 1 . Participants were asked to self-identify their disability type, and over half (n=16) of participants identified as having a physical disability with spinal cord injury, cerebral palsy, and muscular dystrophy most commonly reported. Nearly 20% (n=6) of participants reported multiple disabilities, an equal number of participants reported a hearing disability (n=4) or intellectual disability (n=4), and one participant reported a visual disability. Participants’ mean age was 29.3 with the majority of participants between 25-34 years of age. With regards to race, just over half of participants (n=17) identified as Non-Hispanic White, 35% (n=11) identified as African American, and 10% (n=3) identified as “Other.” Most participants reported being unemployed (n=18), and over half (n=17) reported a total household income less than $30,000 per year. All participants identified as heterosexual.

Table 1.

Characteristics of Women with Disabilities Experiencing an Unintended Pregnancy (N=31)

Barriers to accessing family planning

The first major theme related to disabled women’s experiences with family planning relates to the substantial, and numerous, barriers to access that participants had to overcome to obtain reproductive health care. With one exception, all participants reported barriers to obtaining family planning services, and these barriers were associated with an increased risk of experiencing an unintended pregnancy. Categories within this theme include physical and financial barriers, and healthcare providers who fail to address disabled women’s reproductive healthcare issues or even seemingly to recognize that they have need of such care.

Physical or system barriers: “Kind of normal and natural in my world”

Participants spoke poignantly about physical or system-level barriers to care specific in accessing family planning services. Inaccessible medical equipment such as a lack of accessible exam tables or wheelchairs to assist with longer distances (e.g., from parking lot to clinic) as well as more system-level barriers were experienced by many. One participant reported having to meet her health care provider in an emergency room or obstetrical ward for even routine care, remarking “I’ve never been able to access care in the same manner that other women would.” The clinic where her provider saw patients did not have an accessible exam table for routine examinations. Several other women relayed experiences of having to obtain “routine” care in “non-routine” settings due to accessibility issues. These additional complexities in accessing care often resulted in delayed or missed appointments with one participant noting “I should have had them…I didn’t want to go through the hassle. I’ve probably done them less frequently than recommended.” A Deaf participant faced challenges in obtaining adequate information on birth control because poorly skilled or unavailable interpreters added an additional barrier to navigate. She remarked, “the doctor didn’t really explain all the other options to me… I think if the interpreter that had been there had been doing a better job and was more interactive and more clear, I would have known and it just would have been more accessible information and then I could have made a better choice.” She further described that she stopped her birth control method due to breakthrough bleeding and was not aware of other options.

A subtler physical barrier to care was that women were often dependent on caregivers to take them to appointments or assist with transfers. During adolescence and young adulthood, these caregivers were often parents, and thus conversations around sexual activity and the potential for family planning options could not freely be discussed. A woman with a spinal cord injury described how she felt her mother’s presence at her appointments kept her from being able to talk openly about her sexual health, recounting “I was so dependent on her after my accident…she had to drive me everywhere. When I wanted to have my first [gynecological] exam, she had to help me onto the exam table and she stayed in the room and everything. So, in a way, she had control because she had to be there if I wanted to receive care.” Similarly, another young woman living with multiple sclerosis was accompanied to her appointments by her mother. While she wanted to ask her healthcare provider about family planning options, she was not comfortable doing so in front of her mother, remarking “so I guess that was definitely a barrier. I couldn’t get the information I needed, and that’s how I ended up pregnant.” Similar experiences were described by multiple other participants; that is, wanting to have open conversations with health care providers, but in private, without a family member present.

Financial limitations: “Often times, I don’t come up with the money”

Healthcare providers: “It was the silence around the topic that was most telling”

All participants were asked about their experiences with healthcare providers in discussing, and accessing family planning options to prevent an unintended pregnancy. While few participants were actively discouraged from being sexually active by healthcare providers, many perceived that their providers were highly “reluctant” to raise the issue during the health care appointment. Some participants found healthcare providers quick to assume that they were not in need of contraception as adolescents. One participant with a physical disability recounted seeing her family physician before she went to college, and her mother being in the exam room. She described the encounter with her physician, recalling “she was like going down this checklist, and I remember her clicking through and going ‘well, you’re not sexually active so that’s a no.’” Most of the participants who were older, and in some cases had already experienced an unintended pregnancy, reported that their providers also failed to address the topic. Participants very clearly felt this was due to their disability. As one participant said, “It’s the truth. She [provider] absolutely didn’t talk to me about it…because of my disability. Another said, “I guess [she didn’t talk about contraception] because of my disability. She had seen me for like the last five years and it never came up. It was like that whole section was just skipped over.” Some participants discussed having never had a sexual history taken or had a provider ask about their family planning needs. A participant who used a wheelchair due to a spinal cord injury noted, “no one ever asked if I wanted to be pregnant or if I didn’t want to be pregnant.” Another participant who was Deaf remarked “I did go to a GYN almost every year because I knew I was supposed to but it was never brought up.” Participants often attributed this to a view of women with disability as asexual. A participant living with multiple sclerosis remarked, “persons with disabilities are special, but not in special way. People don’t think we’re interested in sex, or maybe it’s that who would be interested in having sex with me?” A participant with a spinal cord injury described her experience in discussing family planning options noting, “it was more like she didn't believe because I have a disability that I could have intercourse. So she wasn't too worried about it, even though I actually expressed my concerns about it… [she was] definitely dismissive.” Another added “there was also this underlying assumption that it [contraception] was only to help with my periods, like, I’d never need it for birth control that question never, ever came up. Yeah, no one has ever asked me if I was sexually active.”

When asked what they knew about contraception prior to experiencing an unintended pregnancy participants reported a range of knowledge and any unique considerations given their specific disability. For those participants who were older, some described being “placed in separate classrooms” as school aged children for the “birds and the bees” talk, now recounting that the discussions were “more focused on anatomy than anything else.” Younger participants described largely turning to family, friends or social media for information. Overall, participants felt supported in their discussions with family and friends, and rarely were participants discouraged from being sexually active or using contraception. Those who were discouraged from using contraception as adolescents or young adults (n=6) were most commonly discouraged because of concerns from family members about potential side effects of varied methods. With few exceptions, the majority of participants did not receive information during adolescence and young adulthood about reproductive health care needs from a health care provider unless they initiated the conversation.

Finding What Works for Me

The second major theme was related to difficulties participants experienced in finding family planning options that worked for their individual needs.

Like women without disabilities, many participants struggled to find a family planning method that worked for them and that they liked. The information under this theme reflects those struggles and the factors that influenced participants’ experience with family planning, including side effects and problems with methods, both unrelated and related to disability. Many participants perceived providers were often not helpful in providing them with guidance in navigating their challenges with methods.

Women with disabilities in this study often encountered the same kinds of challenges with contraception that women without disabilities typically report. For example, participants experienced side effects like weight gain, mood swings, or diminished sex drive from hormonal methods, or had difficulty remembering to take oral contraceptives. For some, typical side effects (e.g., fatigue, diminished desire) were particularly difficult to manage in the context of disabilities that were already causing such symptoms. For others, the side effects impacted them more severely because of their disabilities. One participant shared, “The reason I was concerned about my weight gain with different options was because of my disability. I struggle with mobility as it is and so I have to really be careful about anything that could cause me to gain weight…it would wear on my shoulders to push myself if I got heavier and transferring would be harder.” Many had to try multiple methods because of side effects that were more problematic given their disability. One participant with a physical disability noted, “I got on the pill and I did fine until I'd been on it for about six months and I noticed I started gaining weight, having horrible headaches, having horrible mood swings, and it was just awful and I couldn't tolerate it and so we tried a diaphragm…. [later] I had decided to get my tubes tied because I did have one abortion and it haunted me.”

For some participants, their specific disabilities affected their physiologic responses to contraception, thus limiting their options. For example, one participant with a genetic metabolic condition reported an idiosyncratic reaction to an injectable contraceptive that caused her to gain a large amount of weight and resulted in hospitalization. Participants with mobility issues (e.g., paraplegia) were unable to safely use hormonal methods due to poor circulation and an increased risk of blood clots. One participant described her challenges when her provider recommended a NuvaRing given her concerns of not wanting something she had to take every day. She remarked I couldn't use [the ring] because I can't bend with my back to insert that in and I know people who have mobility issues, that bending to insert that would be impossible for them too.” Several participants described wanting to explore an intrauterine device (IUD) as an option given their desire for menstrual management or suppression as well as desire for a method without estrogen due to its association with an increased risk for thrombosis. Participants with mobility limitations described not being able to tolerate the positioning required for IUD insertion yet options to have this done under anesthesia were not discussed.

Several participants with weakness or limited use in their upper or lower extremities felt their options were quite limited and did not perceive providers to be sensitive to these needs. The providers often offered little information and few options, leaving participants to feel they had been left alone to identify alternatives when a particular method did not work for them. As one said, “it’s almost like it was my problem to deal with, not theirs.” Another participant with a cognitive disability remarked that she had difficulty remembering to take her birth control pills. When she broached the topic with her provider, she said “she didn’t offer anything. She told me for it to be effective I needed to take it every day which I knew, but just wasn’t good at remembering. I knew there might be some other options but it was “this is your option, take it or leave it.’ Another participant with a physical disability reported, “it was like she wasn’t interested in talking about it. She had made her recommendation and it didn’t work so that was that.” Minimizing menstruation was a particularly important consideration for participants with limited mobility. One participant who self-catheterized hoped that minimizing her periods would decrease her frequent urinary tract infections. Another reported, “periods were also harder for me because I can't stand to clean myself up and so absolutely, I was looking for an option that would not make me gain weight and that would cut back on my bleeding substantially.”

DISCUSSION

The reproductive health needs of women living with disabilities have largely been ignored. 14,26 Unintended pregnancy is regarded as a key indicator of women’s autonomy and control over their reproductive health, and is a marker widely used in policy and program planning. Limited research demonstrates that rates of unintended pregnancy are higher among women with disabilities, who are also disproportionately poor, less educated, and racial and ethnic minorities reflecting both historical harms and existing inequities.

The barriers that women with disabilities face in accessing family planning are substantial. In this study, most participants identified the combination of financial restriction and health insurance limitations as a barrier to accessing optimal reproductive services and family planning options. Overcoming this inequity barrier will involve solutions such as greater employment opportunities, equal pay, and attitudinally and physically accessible work environments for women with disabilities as well as comprehensive health insurance reform. Many of our participants also described physical barriers which either precluded or delayed access to care. Improving access to care will require elimination of such barriers. A study examining physical access barriers found that 44% of gynecological practices were deemed inaccessible to women with disabilities. 27 Despite the passage of the Americans with Disabilities Act thirty years ago, women with disabilities continue to experience barriers in accessibility. Many of our participants discussed examination tables being a limiting factor to care. The U.S. Access Board established standards for accessible equipment, including adjustable height examination tables, yet widespread adoption of these standards has not occurred. 28 Women living with disability are more likely to be poor, and many of the participants in this study had Medicaid. While Medicaid is meant to increase access to care, for participants in this study, it was often perceived as “yet another barrier.” Other research, in women without disabilities, has found that Medicaid recipients often experience stigma. 29,30 Stigma is associated with less utilization of preventative care, delays in seeking care, and lower quality of care. 31,32 While the experience of stigma was not a central purpose of the current study, our findings suggest it may be an important risk factor for unintended pregnancy for women living with disability of reproductive age.

Beyond physical and financial barriers, women experienced negative and nonresponsive encounters with healthcare providers, many of whom treated them with negative attitudes or frank dismissal of their reproductive health care needs and parenting desires. The large majority noted that discussions around fertility desires occurred only if the women raised the issue, and even then, some women felt “judged.” In a qualitative study of pregnant women with physical disabilities, women perceived being treated as “less than normal,” and in some cases feeling viewed as a “problem” by their clinicians. 33 A patient-centered approach is key to optimizing reproductive choices. It is important for clinicians to recognize that women with disabilities are fully sexual beings with the same range of fertility and parenting desires and concerns as their able bodied peers. Addressing sexuality and contraception is an essential part of the clinical encounter. This is particularly salient for women with disabilities who have been historically regarded as asexual.

Assessing fertility goals and contraceptive counseling are discussions that must occur in a patient-centered approach to optimizing reproductive choices. 34 Engaging women in such discussions is increasingly recognized as key public health strategy to decrease rates of unintended pregnancy. Indeed, the American Congress of Obstetricians and Gynecologists (ACOG), along with a number for health care organizations, advocates for “reproductive life planning” in health care settings, recognizing its role in reducing unintended pregnancy, improving maternal health, and pregnancy outcomes. 35

Family planning presents unique considerations for women living with disabilities. Despite recent research showing the therapeutic benefit and safety of levonorgestrel IUD use in young adults with diverse disabilities 36 , participants in our study were not commonly offered this as an option nor were discussions held regarding alternatives for IUD insertion (i.e., with anesthesia). Similarly, when participants discussed issues with the method they were using, they often did not feel as if their concerns were fully heard nor were other options adequately explored by their providers. Our findings are similar to other research demonstrating that women with disabilities feel they face “resistance” by health care providers in adequately addressing their reproductive health concerns, including menstrual management. 37

Limitations

There are several limitations to this study. First, eligibility criteria included the ability to demonstrate capacity to consent, thus we did not include women with significant cognitive disabilities, a group at heightened risk for unintended pregnancy. Second, our convenience sampling strategy may limit the generalizability of our findings to a more diverse population of women living with disabilities in the U.S. Additionally, our findings may be subject to selection bias given our recruitment methods which included extensive use of social media in conjunction with disability-related organizations; participants connected with these supports may not be representative of all women living with disabilities.

Conclusions

This is the first in-depth qualitative exploration of barriers to accessing family planning services and challenges to finding effective family planning options among women with disabilities. This study highlights the extraordinary unmet reproductive health and family planning needs of women with disabilities. The findings underscore the need for disability sensitive reproductive health interventions, disability relevant provider training, health insurance reform and other policy change to optimize reproductive healthcare, improve access to family planning services, and prevent unintended pregnancy among the growing population of U.S. women of childbearing age with diverse disabilities.

Acknowledgments

This work was supported by grant R21HD086471, Risks and protective factors for unintended pregnancy in women with disabilities, from the Eunice Kennedy Shriver National Institute of Child Health and Human Development.

Footnotes

Conflict of interest

The authors report no conflict of interest.

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Contributor Information

Jeanne L. Alhusen, University of Virginia School of Nursing, 225 Jeanette Lancaster Avenue, Charlottesville, VA 22903.

Tina Bloom, University of Missouri Sinclair School of Nursing, S421 Sinclair School of Nursing, Columbia, MO, 65211.

Kathryn Laughon, University of Virginia School of Nursing, 225 Jeanette Lancaster Avenue, Charlottesville, VA 22903.

Lillian Behan, University of Virginia School of Nursing, 225 Jeanette Lancaster Avenue, Charlottesville, VA 22903.

Rosemary B. Hughes, University of Montana Rural Institute for Inclusive Communities, 52 Corbin Hall, Missoula, MT, 59812.

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