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. Author manuscript; available in PMC: 2022 Nov 1.
Published in final edited form as: J Obstet Gynecol Neonatal Nurs. 2021 Aug 10;50(6):732–741. doi: 10.1016/j.jogn.2021.07.005

Experiences of Women with Disabilities in Accessing and Receiving Contraceptive Care

Willi Horner-Johnson 1, Krystal A Klein 2, Jan Campbell 3, Jeanne-Marie Guise 4
PMCID: PMC8759451  NIHMSID: NIHMS1727904  PMID: 34389287

Abstract

Objective:

To conduct an initial exploration of the experiences of women with different types of disability when they attempt to obtain contraceptive care.

Design:

Multiple-category focus group design.

Setting:

Multiple community sites.

Participants:

Seventeen women with disabilities of reproductive age.

Methods:

We purposively sampled women with different types of disability and conducted four focus groups organized by disability type: physical disability, intellectual and developmental disability (IDD), blind or low vision, and deaf or hard-of-hearing. We used a semi-structured focus group guide to elicit participants’ positive and negative experiences with contraceptive care. We analyzed focus group transcripts using content analysis.

Results:

Participants identified challenges to obtaining high quality contraceptive care in three main thematic areas: Accessibility and Accommodations, Clinician Attitudes, and Health Insurance. Participants with physical disabilities encountered inaccessible clinic rooms and exam tables, and those with sensory disabilities or IDD described inaccessible clinic forms and information. Participants from multiple disability groups described negative attitudes of health care providers and health insurance limitations.

Conclusion:

As described by our participants, the processes and infrastructure of contraceptive care were based on an assumption of an able-bodied norm. Reliance on such a norm, e.g., offering a paper pamphlet to a blind woman, is not helpful and can be harmful to women with disabilities. Increased attention to the reproductive health care needs of women with disabilities is important for improving health care equity and quality.

Keywords: Disabled persons, Female contraception, Family planning services, Physical barriers, Communication barriers, Focus groups, Qualitative

Precis

Women with disabilities encountered numerous barriers to contraceptive care because of assumptions of able-bodiedness in clinical settings.

Nearly 18% of reproductive age women in the United States have disabilities (Okoro et al., 2018). Despite this prevalence, people with disabilities face more barriers to health care than people without disabilities (Krahn et al., 2015; Mudrick et al., 2019; Williamson et al., 2017). The history of reproductive health care for people with disabilities is dominated by the eugenics movement of the early 20th century. Eugenicists believed that to allow “feebleminded” individuals to reproduce would weaken the gene pool (Rowlands & Amy, 2019). The term “feebleminded” was applied broadly to include individuals with a variety of disabilities as well as people with limited education and/or low income (Rowlands & Amy, 2019).

As a legacy of the eugenics movement, women with disabilities have long been subjected to societal norms of ableism, including beliefs that people with disabilities are not or should not be sexually active (Sinclair et al., 2015; Stevens, 2011) and are unable or unfit to parent (Agaronnik et al., 2020; National Council on Disability, 2012). Even today, reproductive age women with disabilities in the United States are more likely to be sterilized (Haynes et al., 2018; Li et al., 2018; Wu et al., 2017) and less likely to receive family planning services (Mosher et al., 2017) than their counterparts without disabilities. Yet most women with disabilities are fertile (Ha & Martinez, 2021) and sexually active (Haynes et al., 2018). Women with disabilities are approximately as likely to get pregnant as women without disabilities (Brown et al., 2020; Horner-Johnson et al., 2016), and more likely to experience unintended pregnancy (Horner-Johnson et al., 2020). In a recent systematic review (Horner-Johnson et al., 2019), authors of 10 of 14 studies to compare contraceptive use among women with and without disabilities reported lower use of reversible contraceptives among those with disabilities. Further, among women at risk of unintended pregnancy, women with disabilities were less likely to use the most effective forms of reversible contraceptives (Wu et al., 2017).

Differences in use of family planning services and contraceptives could be related to divergent preferences and needs of women with and without disabilities. Alternatively, they may reflect challenges for women with disabilities in accessing reproductive care and the full range of contraceptive options. Moreover, the challenges women encounter may differ depending on the types of disability they experience (e.g., physical, sensory, intellectual). A clear understanding of the contraceptive care experiences of women in specific disability subgroups can guide targeted efforts to better meet the diverse needs of women in the large and heterogeneous disability population. Yet little is currently known about contraceptive care experiences of women with different types of disabilities. In a handful of studies, researchers described reproductive health care experiences (not necessarily specific to contraceptive care) among women with physical disabilities. In seminal early studies, participants reported encounters with inaccessible exam tables (Becker et al., 1997; Nosek et al., 2001; Nosek et al., 1995), clinic staff who were unwilling to help with positioning (Nosek et al., 1995), and assumptions that women with disabilities are asexual (Becker et al., 1997; Nosek et al., 1995). Similar themes regarding physical inaccessibility (Kalpakjian et al., 2020) and assumptions of asexuality (Kalpakjian et al., 2020; Smeltzer et al., 2016) have emerged in newer studies of women with physical disabilities. Less information is available about reproductive or contraceptive care experiences of women with sensory disabilities or with intellectual and developmental disabilities (IDD). In one recent study focused on barriers to family planning services among women with disabilities who experienced unintended pregnancies, Alhusen et al. (2020) included some women with IDD and sensory disabilities, although most participants had physical disabilities. Participants described barriers related to physical accessibility and communications access, financial limitations, and clinician reluctance to discuss contraception (Alhusen et al., 2020). However, in that study, the researchers did not specifically discuss experiences of women with different types of disabilities or include experiences of women who did not have unintended pregnancies.

To advance equitable care, a better understanding is needed of women’s perceptions of the positive characteristics and the shortcomings of contraceptive health care as currently provided. The purpose of this qualitative study was to conduct an initial exploration of the experiences of women with different types of disability when they attempt to obtain contraceptive care. We included women with physical, IDD, and sensory (vision or hearing) disabilities.

Methods

Design

We employed a multiple-category focus group design. This design involves focus groups with different types of participants (in this case different types of disability), which allows comparisons between categories (Krueger & Casey, 2015). An advisory council of six women with various disabilities, including physical disability, IDD, blind/low vision, and deaf/hard-of-hearing, guided the study. Members of the advisory council participated actively in designing the focus group guide, recruiting participants, conducting focus groups, and reviewing the findings.

Participants

Eligible participants were women between the ages of 18 and 45 who had experiences with seeking contraceptive care and had self-identified disabilities. We used purposive recruitment strategies to ensure inclusion of women in each of the following disability categories: physical disability, IDD, blind or low vision, and deaf or hard-of-hearing. We recruited through postings on our university website and craigslist and fliers in disability resource centers, sexual health resource centers on college campuses, and disability service and advocacy organizations (e.g., support services brokerages for individuals with IDD, Centers for Independent Living). We sent emails to listservs of disability groups and recruited in sign language videos posted on social media groups for deaf users and in emails to participants in a prior survey of women’s health who indicated willingness to be contacted about future study opportunities. Women who were interested in participating contacted study staff and completed a screening form to collect data on age, race and ethnicity, type of disability, insurance coverage, and prior and/or current use of contraceptive care. Women who met eligibility criteria were scheduled for a focus group meeting.

Data Collection

We held focus groups in private conference rooms in community locations easily accessible and familiar to participants. Focus groups were homogenous with regard to type of disability. Based on the number of women who expressed interest in participating, we were able to hold one focus group for each type of disability. Each focus group included 3 to 6 participants and lasted approximately 2 hours. We conducted focus groups during 2016 and 2017.

The advisory council helped to develop the focus group guide, which consisted of broad questions and follow-up probes to gain insight into participants’ experiences with contraceptive care. Specifically, the advisory council reviewed an initial list of topics suggested by the research staff and suggested additional topics, prioritized topics, and reviewed multiple drafts of the guide. The council provided detailed input on specific wording for questions and terminology (e.g., birth control versus contraceptives). Key questions included What are your experiences in discussing birth control with your health care providers? How easy or difficult is it to get the kind of birth control that best fits your needs? What things make it easy or difficult?

We sent consent forms and focus group questions to participants in advance. At the beginning of each focus group, the facilitators reviewed the consent form, answered participants’ questions about the study, and obtained signed consent before proceeding with data collection. We emphasized that women could choose whether or not to answer questions and could discontinue their participation at any time. Participants received a $40 gift card to thank them for their time. Study procedures were reviewed and approved by the Oregon Health & Science University Institutional Review Board.

Focus groups were co-facilitated with advisory council members. The focus group for deaf women was conducted in American Sign Language with voice interpretation. In each focus group, all members participated actively in the conversation. If needed, moderators asked if a participant who had not yet spoken in response to a particular question had anything to add; these prompts yielded responses that added further detail to what had already been said and/or raised new points.

Data Analysis

We audio-recorded focus groups and had the recordings professionally transcribed. The first author (W.H-J.) reviewed each transcript for accuracy while listening to the recording and then removed identifying information from the transcripts to protect confidentiality. The first three authors (W.H-J., K.A.K., J.C.) analyzed focus group transcripts using a classic analysis strategy for content analysis (Krueger & Casey, 2015). We conducted independent open coding of the first focus group, grouping similar quotes and applying preliminary codes. We then met to discuss initial arrangement of codes into categories (codebook assembly). We coded subsequent focus groups independently using the most recent codebook, adding new codes as needed. After each group, we met to review assignment of codes and refine and reorganize the codebook. Where we disagreed on codes, we reexamined the transcripts and discussed possible codes until we reached consensus. After all transcripts were coded, we reviewed the codes together to determine clustering of codes into higher order themes. We then scrutinized the appearance of themes across focus groups to identify key themes that united and distinguished groups. Advisory Council members reviewed the draft themes and supporting quotes and provided a check regarding consistency with their own experiences and what they had heard in the focus groups. We maintained an audit trail of transcripts with initial and revised codes, codebook iterations with explanations of codes and reasons for additions or changes to the code list, decisions regarding coding disagreements, and rationale for how codes were grouped into broader themes.

Results

Participants

A total of 17 women participated across four focus groups organized by disability type: physical, IDD, blind/low vision, and deaf/hard-of-hearing. Participants ranged in age from 26 to 45 years, and most (n = 15) identified their race and ethnicity as White, non-Hispanic. Except for those in the IDD group, all participants had at least some college education. Most (n = 15) participants had public insurance, including a mix of Medicaid, Medicare, and dual Medicaid-Medicare; some had additional private insurance (Table 1).

Table 1.

Participant characteristics (N = 17)

Characteristic Median (range) or Frequency (%)
Age 35 (26–45)
Race and ethnicity
 White, non-Hispanic 15 (88%)
 American Indian 1 (6%)
 Asian 1 (6%)
Education
 Graduate degree 2 (12%)
 College degree 9 (53%)
 Some college, no degree 2 (12%)
 High school diploma 3 (18%)
 8th grade 1 (6%)
Health insurance
 Medicaid only 4 (24%)
 Medicare only 3 (18%)
 Medicaid & Medicare 5 (29%)
 Medicaid & private 1 (6%)
 Medicare & private 2 (12%)
 Private only 2 (12%)
Disability type
 Physical 6 (35%)
 Hearing 3 (18%)
 Vision 4 (24%)
 Intellectual/developmental 4 (24%)
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Three overarching themes emerged to encompass the experiences participants described: Accessibility and Accommodations, Clinician Attitudes, and Health Insurance. These themes are described in detail below.

Accessibility and Accommodations

Participants described multiple challenges with clinic accessibility and obtaining reasonable accommodations. Although accessibility barriers were noted in each group, the nature of the barriers differed by disability type. Participants with physical disabilities encountered significant challenges with physical access to clinical settings. As one participant in her 30s with a physical disability observed: “First of all, the office wasn’t that accessible, so it made it really hard, for a gyno table was never low.” Given limited clinic accessibility, participants with physical disabilities especially struggled with the annual exams their health care providers required for refilling contraceptive prescriptions:

I have to get an exam every year which is really, really difficult to get up on the table and bring my legs in, and they won’t get a lift. They have basically said like if you want to use a lift, you need to find somebody else.

Another participant in her early 30s noted similar challenges with exams:

For me a major barrier is the annual exam, just because it turns into such a production: getting on the table, somebody to hold your legs. For me, I can’t really lay down anymore without having breathing equipment, so I have to bring that in, plug that in, set it up. I just dread the next time I have to do it.

Participants with sensory disabilities encountered challenges with completing paperwork and obtaining sign language interpretation services. Blind participants noted that the paperwork process often involved violations of their rights to privacy:

If I need forms to fill out, I don’t want to sit in the lobby with somebody reading it to me and I have to answer…It’s private information that I don’t want the whole, everybody in the waiting area to hear my information.

Deaf participants described the extra effort required to ensure that an interpreter would be present for their appointments and disruptions in care that sometimes occurred because of a lack of interpreter availability:

I think the hardest part in the process was getting an interpreter. Some doctors are a little bit weird, like, “Oh how do I get an interpreter? What do I do?” And I have to explain to them how to get an interpreter…sometimes [they] would cancel appointments and they’d say, “Oh there’s no interpreter available.”

Deaf participants also emphasized the variability in quality of interpreters and the importance of having a good interpreter: “I just – it would get frustrating if I didn’t have a good interpreter. And I couldn’t always know if I would have a good interpreter there or not.” Another participant expanded on the importance of interpreter quality:

It depends on the interpreter…If I had a good interpreter, then I was comfortable…Sometimes the interpreter was lousy and, you know, so it’s just a balance. Sometimes the doctor is good and the interpreter is good, then it’s a good experience. But it definitely depends on who the interpreter is, even if I don’t know them. The doctor sometimes isn’t as important as the relationship with the interpreter.

While certain types of accessibility issues were more relevant for some groups than others, participants consistently noted that the length of a typical appointment was insufficient to provide needed accommodations. As one blind participant stated: “So, but doctors’ appointments are what, 20 minutes? And if your 20 minutes are up, then what? ‘Have a nice day, here’s a piece of paper.’” A participant with IDD expressed a similar challenge: “Sometimes if they have time to explain it…otherwise, if they don’t, they just get the brief [pamphlet] and send us off.” A deaf participant noted that she needed more time:

There’s a third person involved in the conversation too to help facilitate communication, and it takes more time to have that three-way conversation. And sometimes the time runs out faster and then, you know, you might not have time to ask, “Do you mind repeating that? Or can we go over that again, or can you give me some examples?”

Clinician Attitudes

Participants with each type of disability described negative attitudes about sexuality of people with disabilities and disrespectful behavior from clinicians and clinic staff. A blind participant in her 20s described one such experience:

He was very condescending to me and they’re like, do you want to set him up to be your primary care physician? And I’m like, no. I don’t. And they’re like, well you need to establish a doctor. And I’m like, well it’s not gonna be him because he treated me like I was 10.

The attitudes participants encountered created challenges to establishing ongoing relationships with clinicians. As one deaf participant in her early 30s recounted, “I used to go to a lot of different doctors…Luckily I did find one eventually that I was very comfortable with…who I didn’t feel like was judging me.”

In some cases, clinician behaviors directly interfered with participants’ access to desired contraceptive methods. A participant in her 30s with a physical disability gave one such example:

I was really interested in getting like an IUD or Mirena and I had an experience where a woman, when I first went in before the exam or anything, was really quite rude. She seemed like, you know, I’m not supportive of you doing this and actually said, “I just think it would be too hard and you probably have loose walls to your vagina.” Which was something that I was kind of floored and taken aback with… I was tentative about it [getting an IUD] and then having that experience– when I left, it was back to condoms, because it was kind of traumatic, I guess.

Participants also expressed anger that clinicians made assumptions related to their disabilities rather than trying to understand them as unique individuals. In one illustrative example, a participant in her 30s with IDD stated:

She was being super rude. Her kid has autism, she’s like, why doesn’t it help you to remind – because I have a hard time remembering to take my pills, she’s like “My son has autism, why doesn’t this work for you?”

Participants did share positive experiences as well, which involved clinicians ascertaining and respecting their wishes. In particular, they appreciated acknowledgement of the fact that they have similar desires as other women. For example, one participant in her 30s recalled her first gynecological exam after acquiring her physical disability:

My very first OB gyno, the first thing we did is I went into the room and he said, “Tell me when you want to have kids.” Which, like, for somebody who’s newly injured… that was just a really lovely experience. And it was renewing, you know. That wasn’t necessarily what I was hearing from every doctor about everything.

Health Insurance

Health insurance was identified as a major barrier to care across groups. Some participants felt their insurance plans had interfered with establishing stable relationships with clinicians. For example, a participant in her 30s with IDD stated:

It’s like wherever my insurance will cover, so it’s not like I get to choose my doctor, choose who’s checking me out down there. It’s like literally whoever I can afford to go to and… they constantly change. I really don’t feel like I have access – like reliable access – to medical care because, you know, it’s wherever my insurance will cover.

In some cases, participants found the contraceptive care available from free or non-profit clinics to be superior to what they were able to access through their insurance plans. A participants in her early 40s with a physical disability described one such experience:

When I was first unemployed, I had to go to a family planning clinic because I didn’t have any insurance and I could get my birth control at a reduced rate. And getting information from them was incredibly easy. I mean, any questions I had, people there were great. Getting information from my in-service providers once I had insurance was much more difficult.

Some participants also reported that their health insurance would not cover contraceptives, and others reported limitations in the types of contraceptives their insurance would cover. In particular, they expressed concerns about restrictions in what is covered by Medicaid and Medicare plans. As one participant in her 20s with IDD said, “I have Medicaid, and I am limited with what particular birth control pill I can take. It doesn’t cover a lot.” A participant in her 20s with a physical disability described her frustration with her options under Medicare:

They will cover the pill, they will cover the Depo shot, but they will not cover an IUD. I’ve asked several times why that’s the case, and they said it’s just it’s more of an expensive form, so it’s more expensive to them and I think that until you’ve exhausted the traditional methods, which apparently are the pill and the Depo, that they don’t want to cover the other ones.

One deaf participant in her 30s described an even more restrictive plan and reported having to find alternative sources of coverage:

I had the Medicare which didn’t cover birth control at all…With Planned Parenthood, they have a program that will support people who are maybe low income or don’t have good insurance. And I was accepted under that program to help me pay. So it ended up being free for me to have the IUD. Everything was paid for.

Discussion

In this study, we explored common themes and distinct barriers to contraceptive care encountered by women with different types of disabilities. Regardless of disability type, participants faced multiple obstacles to obtaining high quality contraceptive care. They experienced issues related to clinic accessibility, negative clinician attitudes, and restricted public health insurance coverage of contraceptives. While most of these broad themes emerged in common across disability groups, specific accessibility barriers varied by type of disability. For participants with physical disabilities, if an exam was required, it was a hurdle because of the physical difficulty of getting onto the exam table and getting properly positioned. For participants with sensory disabilities or IDD, accessibility barriers were primarily related to the inaccessible formats of clinic forms and information provided by clinicians (e.g. hard copy only; complex language) and insufficient time during routine appointments for accessible provision of information.

Our findings regarding experiences of women with physical disabilities were similar to other recent studies in which researchers noted challenges with lack of physical accessibility, as well as negative clinician attitudes (Kalpakjian et al., 2020; Smeltzer et al., 2016). Moreover, these barriers are consistent with those identified in groundbreaking seminal research on reproductive health among women with physical disabilities 20–25 years ago (Becker et al., 1997; Nosek et al., 2001; Nosek et al., 1995). Despite the passage of the Americans with Disabilities Act more than three decades ago, women continue to experience difficulty receiving the reasonable accommodations needed to make contraceptive care fully accessible. The existence and persistence of these barriers points to a need for more effective enforcement of the requirements of the Americans with Disabilities Act regarding removal or remediation of physical barriers as well as provision of information in accessible formats (Americans with Disabilities Act of 1990, as amended). Compliance with U.S. Access Board (2017) standards for accessible exam tables and equipment is also important for facilitating relevant exams and insertion of long-acting reversible contraceptives.

Ideally, clinic infrastructure and health care delivery processes would be redesigned to be fully inclusive of patients with disabilities. Applying principles of human-centered design may be especially useful for addressing the needs of patients who are typically overlooked (Altman et al., 2018). Designing health care systems to work for these patients “at the margins” will benefit everyone else as well. For example, adjustable height exam tables that are accessible to those with physical disabilities will also facilitate use by pregnant patients, older patients, and those with temporary injuries. Ensuring that information conveyed in health care settings is clear and accessible to patients with IDD will improve understanding for many other patients as well.

Our findings also highlight the ongoing need to educate nurses, physicians, and medical assistants on provision of respectful and equitable care to patients with disabilities. The compressed timeframe of a typical appointment increases the likelihood that clinicians will rely on implicit biases (van Ryn & Saha, 2011). There has been substantial research on implicit bias in the past two decades, particularly in regard to race and ethnicity, yet there has been limited attention to implicit biases about people with disabilities (FitzGerald & Hurst, 2017). Unfortunately, some of the practices described by participants in our study are not only unhelpful in the moment, they also send negative messages that may make it less likely women with disabilities will return for subsequent care. Thus, the biases exhibited by clinicians and clinic staff can create long-term harm and contribute to ongoing inequities.

Increased education for clinicians on topics such as reproductive justice (Loder et al., 2020) and care for people with disabilities (Phillips et al., 2021) is an important strategy for addressing implicit biases about patients with disabilities. Few nurses or doctors receive sufficient instruction in communicating with or providing care to people with disabilities (Smeltzer et al., 2015; Taouk et al., 2018). For example, in a survey of nurse practitioner curricula, Smeltzer et al. (2015) found that less than a third addressed sexual and reproductive concerns of people with disabilities. Experts in disability and clinical education have developed sets of minimum competencies nurses and other health care providers should be expected to demonstrate (Alliance for Disability in Health Care Education, 2019; Kronk et al., 2020). Widespread adoption and integration of these competencies into health education curricula would represent a significant advance. Additionally, continuing education on diversity, equity, and inclusion should address the needs of people with disabilities. As a small step in this direction, we encourage nurses providing care to reproductive age women with disabilities to ask about childbearing plans and contraceptive needs.

Another avenue for improving quality of care for patients with disabilities is to increase the number of clinicians who themselves have disabilities (Iezzoni, 2016). Researchers who studied health care of individuals from diverse racial and ethnic backgrounds found more utilization of preventive care and greater likelihood of return visits (Ma et al., 2019) and more positive views of clinicians (Saha & Beach, 2020) when there is concordance between the race or ethnicity of the patient and that of the clinician. People with disabilities constitute approximately 25% of the adult population of the United States (Centers for Disease Control and Prevention, 2020) but only about 3% of practicing physicians (Nouri, et al., 2021) and about 10% of licensed nurses (Calloway & Copeland, 2021). Thus, many women with disabilities may never encounter clinicians with direct personal experience of disability. However, when this concordance does occur, it can dramatically enhance patient perceptions of the clinician’s knowledge, understanding, and empathy (Ratcliff, 2018). Yet medical (Meeks & Jain, 2018) and nursing students (Calloway & Copeland, 2021) and practicing nurses (Neal-Boylan, 2014; Neal-Boylan et al., 2012) and physicians (Meeks & Jain, 2018; Neal-Boylan et al., 2012) with disabilities experience numerous physical and attitudinal barriers themselves, contributing to the substantial underrepresentation of people with disabilities in clinical practice. Addressing these barriers in clinical education and practice settings is a crucial component of improving health equity for women with disabilities.

Health policy changes in the past decade have addressed some of the health insurance coverage barriers mentioned by women with disabilities in our study. Yet other barriers remain. The Affordable Care Act (ACA) required insurers to cover contraception with no copay, which dramatically increased the proportion of privately insured women with no out-of-pocket costs for contraception (Sonfield et al., 2015). However, high proportions of reproductive-age women with disabilities rely on public insurance (Horner-Johnson et al., 2016). Thus, while insurance restrictions may affect women regardless of disability status (Armstrong et al., 2016), women with disabilities are disproportionately impacted by coverage limitations in traditional Medicaid plans and Medicare plans. The ACA’s contraception mandate only applied to Medicaid plans for people qualifying for coverage under expanded income eligibility criteria, not for people covered by traditional Medicaid plans that existed prior to the ACA, nor did it apply to Medicare (Kaiser Family Foundation, 2017). In particular, because Medicare is primarily focused on the needs of older adults, coverage for reproductive health and contraceptive needs of younger women with disabilities who qualify for Medicare is limited (Kaiser Family Foundation, 2017; Stanborough, 2021). Addressing these coverage gaps would facilitate more equitable access to a full range of contraceptive options for women with disabilities.

Limitations

It is important to note the limitations of our study. Our data consisted exclusively of information self-reported by women and was not triangulated with health care records or observations of visits. As such, our findings reflect the perceptions and memories of the participants and may be subject to recall bias. Additionally, because participants were self-selected, those who chose to participate may have had particularly strong feelings or opinions about their experiences. We were only able to conduct one focus group for each broad category of functional disability rather than continuing until we reached data saturation. Moreover, the majority of our participants were non-Hispanic white and well-educated. Thus, our findings are not necessarily representative of the full range of women’s experiences with contraceptive care. In the broader population, many women have more than one type of disability and/or more than one marginalized identity and thus may encounter multiple different kinds of barriers. Further research is needed to understand the potentially cumulative effects of the barriers these women experience. Nonetheless, our findings indicate clear areas of need for increasing accessibility and inclusivity of contraceptive care.

Conclusion

Nearly one in five women of reproductive age in the United States has a disability (Okoro et al., 2018). The reproductive rights of these women have long been marginalized. Our findings suggest that the processes and infrastructure of contraceptive care settings continue to reflect an assumption of an able-bodied norm. Reliance on such norms (e.g., designing clinics for patients who do not use wheelchairs; collecting and conveying information in paper format) is not helpful and can be harmful to women with disabilities. Increased attention to the needs of women with disabilities in reproductive health care venues is important for improving health care equity and quality.

Callouts.

  1. Little is currently known about how women with different types of disability experience contraceptive care.

  2. Women with disabilities face multiple barriers to quality contraceptive care, including limited clinic accessibility, negative clinician attitudes, and restricted public health insurance coverage for contraceptives.

  3. Our findings indicate a need for the inclusive redesign of health care delivery processes and infrastructures to better meet the needs of persons with disabilities.

Acknowledgement

We thank Karen Eden, Sara Weiner-Collier, Angel Ray, Rivka Newman, Suzanne Stahl, and Eleanor Bailey for guiding study design, recruiting research participants, and/or co-conducting focus groups.

Funding

Supported in part by grant number K12HS022981 from the Agency for Healthcare Research and Quality (Guise, PI) and by grant number UL1TR000128 from the National Center for Advancing Translational Sciences, National Institutes of Health. The content is solely the responsibility of the authors and does not necessarily represent the official views of AHRQ or NIH. The funding agencies had no role in the conduct of the research or preparation of the manuscript for submission.

Footnotes

Disclosure The authors report no conflicts of interest or relevant financial relationships.

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Contributor Information

Willi Horner-Johnson, Institute on Development and Disability, Oregon Health & Science University, Portland, OR.

Krystal A. Klein, Cambia Health Solutions, Portland, OR.

Jan Campbell, Disability Rights Oregon, Portland, OR.

Jeanne-Marie Guise, Department of Obstetrics and Gynecology, Oregon Health & Science University, Portland, OR.

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