Sage Journals: Discover world-class research

Abstract

Reproductive justice is increasingly being utilized as a framework for exploring women’s reproductive health experiences. However, this topic has not yet been explored among Indigenous state-recognized tribes who do not utilize the Indian Health Service, and little research explores what other factors impact women's ability to reach their reproductive goals. A qualitative descriptive research methodology was used to explore experiences of reproductive justice among members of an Indigenous state-recognized tribe in the Gulf Coast. Data were collected through qualitative semi-structured life-history interviews with female tribal members. Several key themes emerged illustrating barriers related to women achieving their reproductive desires. These included: (a) High Prevalence of Hysterectomy or Sterilization; (b) Experiences with Infertility Common; and (c) High Frequency of Polycystic Ovary Syndrome or Endometriosis. Findings of this study reveal that Indigenous women face multiple barriers to achieving reproductive justice. This study is unique in exploring the family planning desires and goals, and the barriers experienced in achieving these reproductive desires, for women in a Gulf Coast, non-federally recognized Indigenous tribe. These results contextualize national trends and suggest that Indigenous women in this study experience reproductive injustices that harm their ability to achieve their reproductive desires.

Keywords

Indigenous reproductive rights reproductive health reproductive justice fertility

Introduction

Reproductive justice—frequently defined as including the right to have children, to not have children, and to parent children in safe and healthy environments—is an important social justice issue for women of color, who have experienced extensive reproductive oppression both historically and contemporarily (SisterSong, 2006). This topic has also received attention for Indigenous women, with particular focus on the high rates of sterilization experienced by women on many reservations (Gurr, 2014; Lawrence, 2000; Theobald, 2019). However, other factors which act as barriers for women achieving their reproductive goals, such as high rates of endometriosis and inability to pay for fertility treatments, have been less frequently explored through the lens of reproductive justice. In addition, these topics have not been explored for women who are members of non-federally recognized tribes, and who do not receive healthcare from a centralized system, such as the Indian Health Service (IHS) (Krieger & Fee, 1994; Lawrence, 2000; Gurr, 2014; Theobald, 2019; Torpy, 2000).

The IHS agency, run through the U.S. Department of Health and Human Services, is tasked with providing comprehensive health services for federally recognized tribal members (U.S. Department of Health and Human Services, Office of Minority Health, 2016). Most research on Indigenous healthcare policy focuses on the provision of services through IHS, leaving out the ways in which non-federally recognized tribal members access and experience reproductive healthcare services. This study begins to address this dearth of research by exploring how Indigenous women from one state-recognized tribe experience reproductive healthcare outside of IHS, and through other forms of healthcare access including private insurance, Medicaid, or Medicare.

A distinct need exists for research on reproductive health topics, particularly for Indigenous women, who are more likely to experience reproductive injustices such as sterilization, loss of children, and inadequate access to resources (Gurr, 2014). Indigenous women die from pregnancy-related complications at twice the rate of White women (CDC, 2020), while rural Indigenous women are especially at-risk of experiencing high rates of maternal morbidity (Kozhimannil et al., 2020). Furthermore, compared to non-Indigenous infants, Indigenous infants experience high rates of infant mortality (Alexander et al., 2008; Wong et al., 2014). A reproductive justice approach is needed in exploring these reproductive health topics and disparities. This study is part of a broader research project exploring the reproductive and sexual healthcare experiences of Indigenous women who are members of a Gulf Coast state-recognized tribe. Here we focus on the following research questions: (1) How do Indigenous women in this tribe meet their reproductive desires? and (2) What barriers do they face in meeting those desires?

Background

Reproductive Injustices

Indigenous women's sexual and reproductive decisions have been consistently monitored and restricted by social institutions. Chavez (2004) notes that both biological and sociological components of reproduction are areas of political contestation and have implications for whose reproduction is valued versus whose is viewed as a threat. This leads to reproductive options that are not uniformly available to all women, and disparate judgments of women's reproductive decisions. These restrictions can be understood through the concept of “stratified reproduction” (Colen, 1995) through which women's reproduction is valued differently based on race, sexuality, class, or immigration status, among other categories. Through this framework, privileged White women's reproduction is portrayed as normative and positive in contrast to the reproduction of all other women. Reproductive health policies, and access to reproductive healthcare, have often served to reproduce existing social hierarchies by surveilling and curtailing the reproduction of certain marginalized groups (Bell, 2014; Davis, 2003; Davis, 2014; Flavin, 2008; Gould, 1984; Hill-Collins, 1990, 2004; Kluchin, 2011; Roberts, 2014; Roth & Ainsworth, 2014; Smith, 2004, 2005a,b). These policies in turn mean that women's reproduction becomes rooted in racialized, gendered, and classed notions of worthy and unworthy mothers.

Coercive contraception and forced sterilization

Those deemed unfit and unworthy mothers were subjected to various reproductive injustices, including coercive contraception practices and forced sterilization, intended to curtail reproduction. Long-acting reversible contraception (LARCs)—which generally include intrauterine devices (IUDs) (i.e., Mirena and ParaGard), subdermal implants, (i.e., Norplant, Implanon), and injectable shots (i.e., Depo Provera)—are frequently prescribed to women of color (Gurr, 2014; Roberts, 2014; Theobald, 2019). Historically, women of color were often pressured to utilize LARCs, which were routinely administered without their consent (Roberts, 2014; Solinger, 2013). The framework of stratified reproduction can also be seen in the regulation of Indigenous women's contraceptive options. Indigenous women were also frequently pressured to use LARCs, while simultaneously being denied access to services such as tubal ligation reversals (Cordova-Marks et al., 2020; Gurr, 2014). This form of non-permanent contraption offered to Indigenous women discourages autonomy and true reproductive choice, while reinforcing historical practices of reproductive oppression and surveillance of Indigenous women's bodies (Harris & Wolfe, 2014).

Forced sterilization was also systematically employed by the state to eradicate certain groups, as in its use on reservations with Indigenous women (Davis, 2003; Gurr, 2014; Smith, 2005a; 2005b). On some reservations, up to 70% of women of child-bearing age were sterilized (Gurr, 2014). In cases where sterilizations were “elected,” Cordova-Marks et al. (2020) have noted that these sterilizations were often performed immediately following childbirth, at a time when the physical and mental stress of childbirth may compromise a woman's decision-making abilities. In many cases, women were not even aware that these surgeries were being performed, and for some tribes, sterilization was performed on anywhere from 24% to 80% of all women of childbearing age (Gurr, 2014).

Although the contraceptive experiences of Indigenous women tend to primarily be discussed in relation to high rates of hysterectomy and sterilization (Cackler et al., 2016; Gurr, 2014; Kluchin, 2011; Lawrence, 2000; Theobald, 2019), scholars have also noted that women of color are more likely to live in “contraceptive deserts” (Kreitzer et al., 2020). National level data about the contraceptive methods used by Indigenous women are incomplete and are non-existent for state-recognized tribes in the southeastern United States; however, findings from the 2002 National Survey for Family Growth indicate that 61% of Indigenous women ages 18 to 44 were not using any form of contraception (Rutman et al., 2012). Of those using contraception, 23% were using an injection or implant form, 32% were using contraceptive pills, and 25% were using condoms.

Inadequate fertility care

There is also little research exploring the topic of infertility and obstacles to reaching family planning desires among Indigenous women. Infertility, by hindering the ability of individuals to meet their reproductive desires, is an issue of reproductive justice. Furthermore, infertility issues may generate various public health consequences, from severe psychological and emotional distress to social stigmatization and increased instances of intimate partner violence (Greil et al., 2010; Stellar et al., 2016). Despite the growing recognition of infertility as a human rights issue (World Health Organization, 2020), access to fertility care remains out of reach for many women. In particular, Black, Indigenous and other women of color, poor and rural women, women with less education, and queer women face significant barriers to accessing infertility services (Barnes & Fledderjohann, 2019; Greil et al., 2010). Considered to be the “invisible infertile,” or those who are excluded from infertility care by the state due to their invisibility, these women's reproductive desires are routinely oppressed (Barnes & Fledderjohann, 2019). These barriers to accessing fertility care reflect historical valuations of marginalized women's fertility which continue to limit equitable access to family planning services (Curtis, 2017; Harris & Wolfe, 2014).

Indigenous women, like other women of color, experience high rates of infertility and decreased ability to access fertility care. A recent study by Craig et al. (2019) analyzed the National Survey of Family Growth data to estimate rates of infertility among American Indian and Alaska Native women. According to their analysis, Indigenous women experienced 1.37 times greater prevalence of infertility compared to White women. Though Indigenous women face increased rates of infertility, very little research attends to the particular barriers they face in accessing fertility care (Janitz et al., 2019). To our knowledge there is also no research exploring this topic for non-federally recognized tribes. This is an important gap since Indigenous women have seen a more drastic decrease in expected fertility than any other racial group (Stone, 2018). Research is needed to explore whether this change in expected fertility is consistent with women's reproductive desires, or if it is due to other factors. Similarly, although polycystic ovary syndrome (PCOS) and endometriosis have been linked to infertility, rates for Indigenous women are difficult to identify, and there is a need for an exploration of these diagnoses and fertility for Indigenous women (Norman et al., 2007).

Limited access to reproductive health care

Access to care is an additional important factor which influences Indigenous women's access to reproductive health services. Kreitzer et al. (2020) has noted that healthcare access is made up of both spatial and non-spatial dynamics. Indigenous groups are negatively impacted by barriers across multiple levels. For example, Indigenous health care is hindered by the lack of public health infrastructure, the complexities and logistics of supplying healthcare services to over 500 tribes, funding issues, and the lack of Indigenous public health professionals (Gurr, 2014; Jones, 2006; Kozhimannil et al., 2020).

Geographic location is particularly influential for the tribe in this study since many tribal members lack close or convenient access to healthcare facilities. Kreitzer et al. (2020) has argued that “the geography of health is neither apolitical nor race- or class neutral” (2). They note that where hospitals are built often correlates with areas where political capital is high. Kozhimannil et al. (2020) also argue that both race and geography contribute to maternal health disparities. In a study exploring maternal mortality and morbidity of Indigenous women, they found that although being Indigenous was highly associated with increased maternal mortality and morbidity, this was especially compounded for rural Indigenous women. In a recent study conducted in the Gulf South, researchers found that living in a maternal healthcare desert (with lack of access to maternal healthcare) was associated with a 91% increase in risk of death in the year following childbirth (Wallace et al., 2020). Wallace et al. (2020) also noted that women of color were still at greater risk of maternal death, regardless of residential proximity to maternal healthcare.

Conceptual Frameworks

Settler colonialism

These ongoing reproductive injustices experienced by Indigenous women may be understood through the framework of settler colonialism. Settler colonialism can be broadly defined as an ongoing process that continues to structure the racialization, dispossession, and genocide against Indigenous peoples in the United States and abroad (Glenn, 2015). More particularly, settler colonialism is characterized by the elimination of Indigenous peoples through various strategies, including forced relocation, child abduction, forced assimilation, and most importantly, land acquisition (Wolfe, 2006). In this study, we situate Indigenous women's experiences of reproductive healthcare within the context of settler colonialism to demonstrate how settler colonialism is a continuous practice, beginning with genocide and forced removal of Indigenous peoples and continuing in the present day through the experience of health disparities and oppressive reproductive practices (Gurr, 2014). In other words, centering Indigenous women's reproductive healthcare experiences within the framework of settler colonialism helps us understand how contemporary social inequalities are rooted in a deeper history of racialized and gendered violence against Indigenous women.

Reproductive justice

A reproductive justice approach is needed in exploring these reproductive health disparities as they impact Indigenous women. Reproductive justice—a framework established by Black women in the 1990s to unite reproductive rights and social justice praxis—is generally understood as the right to have children, not to have children, and to raise children with safety and dignity (SisterSong, 2006). The framework has received growing attention in the field of social work, with scholars noting the ways in which the social work profession has both promoted and hindered reproductive justice (Gomez et al., 2020; Liddell, 2018). Furthermore, the field of social work has failed to adequately address reproductive injustices in both intervention and research (Alzate, 2009; Gomez et al., 2020; Liddell, 2018). This study aims to address this gap by situating the reproductive healthcare experiences of Indigenous women within the framework of reproductive justice.

Purpose

The focus of this research is to explore how the components of reproductive justice are experienced by members of an Indigenous state-recognized tribe in the Gulf Coast. This study is motivated by the following research questions: (1) How do Indigenous women in this tribe meet their reproductive desires? and (2) What barriers do they face in meeting those desires? This study is unique in exploring this topic for state-recognized tribes who do not receive healthcare services from the IHS, and who do not have access to some of the resources federally recognized tribes do. In particular, we focus here on the right to have children and analyze the experiences of women in this tribe to highlight supports and barriers to achieving their reproductive goals.

Methods

Research Design

This study was guided by a qualitative descriptive methodological approach, which is often used in qualitative health research due to its focus on using low inference interpretation, centering participants’ own words and experiences, and preserving cultural and historical context (Sullivan-Bolyai et al., 2005). Qualitative description prioritizes participants’ voices over the researcher's abstracted interpretations, in order to better understand participants’ complex experiences as embedded within specific cultural contexts (Sullivan-Bolyai et al., 2005). Furthermore, qualitative description, with its emphasis on using everyday language to richly describe participants’ experiences in their own words, encourages the research is accessible to multiple audiences (Sullivan-Bolyai et al., 2005). It has also been identified as a culturally grounded approach to use with marginalized groups, including Indigenous populations (Burnette et al., 2014). Qualitative content analysis, a form of data analysis often used in qualitative descriptive studies, was used to analyze interview data (Milne & Oberle, 2005). Qualitative content analysis allows for theory to inform results while also allowing for the emergence of codes related to participants’ voices (Milne & Oberle, 2005).

Setting and Participants

Thirty-one women who identified as members of a state-recognized Gulf Coast Indigenous tribe participated in individual, semi-structured life-history interviews. A purposive snowball sampling method was used to recruit participants. Eligible participants were included based on the following criteria: (1) aged 18 or older; (2) self-identified as female; and (3) self-identified as a member of the tribe. Because the focus was on women's reproductive and sexual health across the lifecourse, data were collected with community members of all ages to ensure a variety of health experiences would be represented. The identity of this specific tribe remains anonymous in accordance with agreements with the tribal council and culturally grounded research approaches (Burnette et al., 2014).

The participants’ ages ranged from 18 to 71 years (M = 51.71 years). Most participants (87.1%) had either a GED or high-school degree, with nearly half (51.61%) having some form of additional training or education. Nearly all women (93.54%) reported having some form of private or public health insurance. The majority of participants identified as mothers, with most women (83.87%) having at least one child. Those women reported having, on average, between two to three children, and having their first child around 20 years old.

Data Collection

Institutional Review Board approval was obtained from both the University and tribal council prior to beginning the study. A community advisory board (CAB) was created to ensure the research approach and implementation was culturally appropriate. The CAB consisted of two women tribal community members who assisted with the development of the interview guide, facilitated the recruitment of participants, and helped disseminate results. The interviews followed a protocol of 39 open-ended questions following the life-trajectory which explored women's reproductive and sexual health experiences (e.g., “Can you tell me about a time you needed sexual/reproductive healthcare?”; and “Can you tell me a little bit about being pregnant and giving birth?”) (For a full guide of interview questions, see Liddell & Kington, 2021). Additional articles related to this study include (Liddell, 2020; Liddell & McKinley, 2021b; Liddell & Lilly, 2022). Rubin and Rubin's (2005) responsive interviewing model was followed, which emphasizes following the interviewee's lead, and flexibility in asking questions. All interviews were conducted by the first author between October 2018 and February 2019. Informed consent was received for participation in the interview and audio recording. Interviews were completed at a location chosen by the participants, including local community buildings and participants’ homes, and ranged from 30 to 90 min long, with a median length of 62 min. Following the interview, participants were compensated with a $30 gift card.

Data Analysis

The analytical approach followed qualitative content analysis, which allows for existing theory to inform results while simultaneously allowing for particular codes to emerge from participants’ words (Milne & Oberle, 2005). Data analysis followed Milne and Oberle’s (2005) strategies for promoting rigor in qualitative research to ensure accurate representation of participant voices. These strategies included verbatim and accurate transcription, inductive coding guided by participants’ actual language, and situating the analysis within local context.

Interviews were transcribed verbatim and analyzed using NVivo software (QSR International, 2015). The first author (study PI) conducted the initial coding of interviews and then both authors assessed quotes for themes related to reproductive barriers and desires. The first author listened to recorded interviews and reviewed transcripts multiple times before developing a list of initial codes based on the interviewees’ own words. In this phase, codes were segments of interview text that ranged from between a few words to several sentences (Saldaña, 2014). The first author then conducted directed coding using these initial codes. Following this process, secondary coding was performed to identify sub-themes, resulting in a list of more refined codes (Saldaña, 2014). For example, the general theme “reproductive barriers” resulted in more refined sub-codes of “no insurance coverage” and “doctor ignored concerns.” Both first and second author discussed findings together and came to a consensus about how to interpret interviewee quotes.

Finally, member checks were completed in order to follow a community-based and culturally congruent research approach. All participants who consented to being contacted following the study were provided a summary of results at least twice. Findings were later presented at various tribal events, including tribal council meetings, to maintain community participation throughout the research process.

Results

Women described their family planning desires and experiences, particularly focusing on barriers to achieving their reproductive desires. These findings can be understood through the reproductive justice framework. The ability to control and determine the size of one's family is a key component of the reproductive justice framework. The most common topics that women spoke about included: High Prevalence of Hysterectomy or Sterilization; Experiences of Infertility Common; and High Frequency of PCOS or Endometriosis.

“I Had A Hysterectomy, But I Always Thought About That Fourth Child That I Never Had That I Wanted”: High Prevalence of Hysterectomy or Sterilization

Sixteen women mentioned hysterectomy or some form of permanent sterilization, and this was referenced 24 times. Nearly one-third of women in this study indicated they had a hysterectomy.¹ It is important to note that this was not specifically probed for, so the number of women having had a hysterectomy, or another form of sterilization, may potentially be higher. Additionally, hysterectomies tend to be performed on older women, so if the sample had exclusively been elder women this rate may have also been even higher. At least a few of these women felt this could have been prevented, and these women expressed regret at having had a hysterectomy. Participant 17 described having a hysterectomy but wishing that she could have had more children: “Well, I had to [have one] because I had a lot of bleeding, endometriosis and stuff like that…. [without the hysterectomy] I would have tried for boy, but…. I was having a lot of bleeding, a lot of bleeding.” Participant 4 also described wishing she could have had more children after having her tubes tied: “I had my tubes tied…. But I wish I would have had one more.” Participant 20 similarly had a tubal ligation, but would have preferred to have had more children:

We're done [having children].…I was 35 when I got pregnant with our last daughter and 36 when we had her. And so, I felt that was a good cutoff point just because of my age. And complications. . . We would have liked to have more children, however, like I said, due to age and stuff. So, I did have the tubal ligation…. That was a decision we made.

Other participants described reproductive health complications that precipitated their hysterectomies. Participant 1 described complications her mother had that she attributes to taking birth control, that led to her mother having a hysterectomy despite wanting more children:

She had my sister; she was on birth control pills. And then . . . [when] she had my brother, she had blood clots…I remember . . . my aunt coming and giving shots to her all the time in her stomach, and she had to stay . . .pretty still…. My grandma came, stayed with us…then she got pregnant with my sister…. then after that, the next thing you know, they say she had to have a total hysterectomy…[and] she developed blood clots again. So that was like a second round of blood clots.

This participant also describes the important role of family in supporting her mother when her mother was being treated. Similarly, another participant stated she had complications related to taking the birth control pill and then had a hysterectomy after her fourth child: “I had complications . . .with the pill because I was having like high blood pressure and stuff. So, then I went to the IUD and then I’ve got like, I think complications from that. Then they took it out and I don’t remember if I went back to the birth control. . .[then] I had a hysterectomy.”

Participant 15 described the results of an environmental health survey in her community as it related to reproductive health:

I guess about six of them in a range of a hundred…we had 99 women in the community. Cause I remember doing the survey, 101 men, 99 women and 102 kids…. And so out of that, we probably had seven women who had hysterectomies, all the same age and in the same two streets.

This woman reported seeing a large increase in the number of women having hysterectomies which she attributed to reproductive health problems caused by environmental hazards in the area.

Some women described interactions with reproductive health providers which shaped their experiences of sterilization and hysterectomies. Participant 30 described an experience she had on a reservation as a young woman that left her sterilized:

I've never had any children, but . . . I lived on the [name omitted] reservation at the age of 21…. I met . . . a guy. And then I moved out to the reservation with him. . .We weren't using contraceptives, but I started having pains on my right side and I didn’t know what was going on…. Eventually . . .one day . . . I was just incapacitated with the pain. And so, they took me to the IHS and come to find out at the local IHS in [location name omitted]. They . . . said, “oh, you’re pregnant in your tube, a tubal pregnancy.” So . . . they sent me to [city name omitted], which is the bigger hospital, the White hospital. So, I went there and then they . . . removed . . . one of my tubes, where the baby was growing, and . . . I never got pregnant since.

After reflecting on this experience, this participant wondered if she had been sterilized on purpose and further described the negative experience she had:

I had heard about this…sterilization and that sort of thing. And I often wonder, wonder whether or not that was done to me purposely. . .I don’t know. Because they were horrible. They were horrible in [state name] . . .I’ve never, you know, broadcast that, or said that . . . but I . . . often wonder because they were not nice…. Number one, I was an Indian person from the local, they felt that I was [from] [name of tribe on reservation], you know…not that it was gonna make a difference, that I was [name of tribe] [not from local reservation]. . .It was just a really painful, traumatic experience because after my surgery, they woke me up and they said, “okay, you have to walk now.” And I'm like, “I can't. I hurt, you know, I can't.” And so they said “no, you have to, you have to get up and walk.” And so they, I stayed there for the surgery and the next day and then the following morn- No, I didn't even stay a whole night. I think . . . they sent me back…Then they shipped me back to IHS, and I stayed there for one night and then I went home.

In looking back on this experience, this participant feels that discrimination probably contributed to the poor treatment she received. Participant 19 also described having her reproductive desires influenced by healthcare providers:

I started having problems. I wanted to have another child. In fact, I dream about that child still today. . .I went to see the OBGYN… he was telling me that it seemed like my womb had tilted, my uterus had tilted. So, he…asked me, he said, “Do you want to have more children?” I said, “Yeah, I’d love to have another child.” He said, “Well, what if I told you couldn’t have it, or you’d have to have it now.” I said, “What do you mean?” He said, “The chances of me being able to carry would not …” So he said he recommended that I have a hysterectomy. So, I said, “Okay.” I listened to the doctor, and I said, “Okay.” So, I had a hysterectomy, but I always thought about that fourth child that I never had that I wanted.

These extremely common experiences of hysterectomies or other forms of sterilization suggest that whether purposefully performed by providers either consciously or unconsciously seeking to control Indigenous women's reproduction, or caused by health disparities or other environmental factors, women's reproductive rights are not being met. They also reinforce how women are often dependent on institutions like hospitals and providers and trust them to make appropriate healthcare decisions, whether or not that is indeed the case.

“So Many More People Are Having so Much Trouble Having Babies”: Experiences With Infertility Common

Ten women described experiences with infertility which was referenced a total of 17 times.² One participant related her experience with infertility to being placed on birth control during high school. Participant 3 shared:

Because of menstrual problems in high school, the doctor put me on birth control. I did not know it was birth control to help me because my periods would last 2 weeks…. Sometimes I did not have a period for 6 months…. I believe because of having been put on the pill so early, it messed me up for fertilization…I had to take fertility drugs to get pregnant.

Though she was placed on birth control by a doctor to regulate her menstrual problems, the participant believed this decision ultimately resulted in issues with fertility, hindering her reproductive autonomy and desires.

Many women described other institutional barriers to accessing fertility services. Though some women were able to get medical support, some women were not, often due to it not being covered by insurance. Participant 12 described her struggles with getting pregnant:

No, I tried to get pregnant. I even went to [large city name], to a fertility doctor and everything…. That [fertility doctors and treatment] was just starting, and I still remember his name, Dr. [name omitted] …I remember him doing some stuff and blowing up my stomach. It got this big [gestures with hands to stomach] and stuff like that, to blow out my tubes and everything. And we would try everything. I would take my temperature. And we had the store, so it was easy. So, I would call my husband, “It's time!” “Right now?”[he’d say] I'd say, “Yeah, right now.” And then we bought a house. And then when we bought a house, I guess I quit worrying about it and I got pregnant….

This participant describes finally being able to get pregnant when she stopped actively trying, despite spending a significant amount of time and money pursuing fertility treatments. When I asked how she paid for these treatments, she reported paying for it herself: “I had insurance, but I don't think it was covered by the insurance.” Participant 20 described waiting to get pregnant and it taking longer than she expected:

My husband and I . . . got married fairly young. . . I was 23, he was 24, that’s young for now. Everybody's getting married older now… we decided we'd wait a few years before we had children and then . . . I guess God had other plans because I was 30 before. . . It was 7 years before we had our first child, but it took us 2 years to get pregnant.

This participant described her doctor not supporting her concerns about her difficulties getting pregnant and not giving her treatment:

We had to go through [a lot]. I took fertility medicine. . . I got pregnant, had a miscarriage, and it took another 2 years before I got pregnant the second time. And I had our first daughter on fertility medicine…. We did Clomid . . . for a month actually. Miraculously, it worked…I had been told you may not be able to ever have children…. So for, I don't know how many years we had gone through not being able to get pregnant and the doctor would never take a step further…. He was like you are young. Wait, wait, wait, wait, wait, wait, wait, wait. And then finally I came across another doctor I went to after the miscarriage.

Although this participant was confident in her desire to have children, she described her provider dismissing her concerns and telling her to wait because of her age. This participant also stated that she felt that infertility was becoming a more common issue and acknowledged getting to see a fertility specialist was difficult for many women:

So many more people are having so much trouble having babies. They don't know where to go. There are not very many fertility specialists in this area. They have to go to [large city] …would it be easier if they had fertility specialists here? I'm sure. You know, they can't go to [large city] …They can barely get to the doctor in [city name that is close] … It's not always affordable to be able to see the fertility specialist.

They also noted that being able to pay for infertility services as a major barrier for many women:

Insurance doesn't always cover it. It's . . . not cheap. . .We were able to see the regular gynecologist. We didn't have to get to the point to see the specialist… My insurance now will not cover it. My husband was working for [company name omitted] and they covered everything. There was nothing they do not cover. They covered tubal reversals. They covered in vitro. … They even covered transgender surgery…There was nothing, when I say nothing, they didn't, cover… but that was the first insurance that I saw that covered any and everything you can think of…our insurance now does not.

This speaker stated that although her previous insurance did cover any infertility services she may have needed, her current insurance did not. Participant 25 reported that she had to pay for her infertility treatments out of pocket; because although she had insurance, it was not covered:

We've done some fertility treatments, different kinds of medication and things like that, but they said if I don't have kids by 35, my chances are slim to none. But I've come to that conclusion a long time ago. Me and my husband's been together, for 18 years. We've been trying.… I had insurance, but I was paying the insurance on [out of] pocket. Cause I needed it to be able to see my fertility doctors and things like that.

These experiences highlight the difficulty many women had in achieving the reproductive justice component of the right to have children and the role of institutional barriers such as healthcare insurance not paying for infertility treatments, or providers being resistant to diagnosing women with infertility.

“I Always Had Like Women's Problems”: High Frequency of PCOS or Endometriosis

Having a diagnosis of either PCOS or endometriosis was reported by several women. Though having a diagnosis of endometriosis or PCOS was not specifically probed for, six women out of the 31 (19%) described having received a diagnosis with one, or both conditions which was referenced a total of 16 times.³ Many of these women reported extreme difficulty in getting a diagnosis and adequate treatment for these conditions. Participant 20 felt that PCOS was becoming more common and wished there was more education for women about it:

I was diagnosed with polycystic ovary syndrome. Which seems to be a trending thing more and more…. I think a lot more people are getting diagnosed with that…. it's becoming . . . so much more prevalent without them knowing that they have it. I try to tell them [friends and family] to get tested if I see . . . they have kind of the same symptoms… I tried to tell them, you want to tell people and educate them as much as I can with that.

Participant 31 described having difficulties getting pregnant and not having children until she was older because of her diagnosis of PCOS:

Honestly, it was my body. I couldn’t get pregnant. I tried, we weren’t married at the time, and I really wasn't prepared…. But I just really don't think it was time for us at that point to have children because we tried, I wasn't on any birth control or anything like that, it had been a few years. . . Then Dr. [name omitted] … had diagnosed me with PCOS.

Participant 25 also described the process of getting her PCOS and endometriosis diagnosed after experiencing reproductive health difficulties:

I always had like women's problems, I have PCOS and I have endometriosis, so I always had irregular periods and things like that and that's why my mom brought me [to the doctor] …. it took 6 years though [years to get diagnosed] …. it [the pain] wasn't really bad until I was like 16, 17 years that it got irregular…. And I can't have kids…. I haven't had a period in a couple of years, but I don't go to the doctor. I don't want to go and get put on medicine, because that, that's what they want to do. You know, “oh you have to regulate you period.” I just don't want to be put on medicine on a daily basis. So, I manage it.

This participant had had previous negative experiences with doctors, including her mother having a stroke and being pressured herself to go on birth control when she was not comfortable taking it. This also highlights the role of previous experiences with medical providers and how these impact future desires and interactions. These experiences kept this woman from continuing to seek treatment for her PCOS and endometriosis. Similar to many women's experiences with getting treatment and diagnosed with infertility, here many women describe related barriers in getting diagnosed and treatment for PCOS and endometriosis, both health conditions which can negatively impact a woman's ability to get pregnant and achieve their reproductive justice goals, in addition to often being extremely painful. These healthcare issues can be understood as being exacerbated through institutional barriers such as provider attitude and insurance status, but also other macro and mezzo factors since chronic healthcare issues such as these are increasingly being linked to environmental issues and healthcare access.

Discussion

Women discussed their desire for having or not having children, the number of children they hoped for, and challenges in getting and staying pregnant. Several women described struggling with infertility at some point in their life, and many women tended to report wanting more children than they had. Though some women were able to get medical support, some were not, often due to it not being covered by insurance. Having a diagnosis of either PCOS or endometriosis was reported by several women. Many of these women reported extreme difficulty in getting a diagnosis and adequate treatment for these conditions. Access issues in women's ability to meet their family planning goals were also frequently noted. Several women reported having had a hysterectomy. At least a few of these women felt this could have been prevented, and these women expressed regret at having had a hysterectomy.

Although sterilization has been extensively discussed in relation to IHS, this topic has not yet been explored among state-recognized tribes. However, consistent with national literature on the sterilization of Indigenous women, in this study, sterilizations and hysterectomies often took place immediately following childbirth, which scholars have noted raises concerns about informed consent (Cordova-Marks et al., 2020). Other research has noted that Indigenous women who have been sterilized are over twice as likely to suffer from poor mental health than those who have not been sterilized (Cackler et al., 2016). Although mental health was not specifically probed for in this study, several women who were sterilized expressed regret at not being able to meet their reproductive desires.

In addition to sterilization, women reported additional obstacles related to their ability to reach their fertility goals. Several women described struggling with infertility at some point in their life, and although some women were able to get medical support, it was usually not covered by insurance. Having a diagnosis of either PCOS or endometriosis was reported by several women. Many of these women reported extreme difficulty in getting a diagnosis and adequate treatment for these conditions. Although the number of children women had and desired varied greatly, women tended to report wanting more children than they had. These findings are consistent with national literature showing that Indigenous women, more than any other racial group, have seen a rapid decrease in fertility, losing 15% of their expected fertility (or 83,000) births between 2008 and 2016 (Stone, 2018). There exists a dearth of research regarding prevalence of PCOS and endometriosis among Indigenous women, but links between PCOS and health conditions which disproportionately impact Indigenous groups, such as diabetes and cardiovascular disease have been described, as has the link between PCOS and reduced fertility (Norman et al., 2007). Of particular concern is the extreme difficulty several women reported in getting adequate treatment and diagnosis of their health conditions. This finding is consistent with previous literature describing how women of color often have their health concerns dismissed or untreated (Dovidio & Fiske, 2012; Feagin & Bennefield, 2014).

Physical barriers to accessing reproductive health care included long distances to health care facilities, and a lack of access to specialists. Women reported that they would have to drive several hours if they needed to see any type of specialist, and that the wait times for these appointments were very long. Attention to the role of geography and healthcare has recently received increased attention among Indigenous groups. These studies have argued that the geography of where healthcare facilities are located is impacted by both class and race, and that geographic access to hospitals is directly linked to maternal health outcomes (Kozhimannil et al., 2020; Kreitzer et al., 2020). Maternal health outcomes are poor for Indigenous women in general, but are especially poor for rural women, a finding which is consistent with participants’ descriptions of their ability to access care (Kozhimannil et al., 2020). The concept of maternal healthcare deserts has been proposed as one way to conceptualize these gaps in care (Wallace et al., 2020). This concept has yet to be explicitly explored in relation to Indigenous women.

These barriers can also be understood through Theobald’s (2019) description of the process of the U.S. government's simultaneous control and neglect of Indigenous women's healthcare, which acts to perpetuate the ongoing process of settler colonialism. Reproductive oppression, whether through purposeful action or lack of intervention, is a continuation of the settler colonial goals of the eradication of Indigenous peoples (Glenn, 2015; Theobald, 2019; Wolfe, 1999). These findings can also be conceptualized in terms of Colen’s (1995) concept of stratified reproduction, where the reproduction of privileged White women is seen as the norm and actively promoted, and the reproduction of others is discouraged or otherwise regulated.

Understood within broader histories of reproductive oppression, Indigenous women's contemporary experiences of reproductive healthcare can be seen as an issue of reproductive justice. In this study, Indigenous women's reproductive autonomy was restricted in many ways; for example, although women were unable to meet their optimal family size, infertility treatment is infrequently covered by healthcare insurance and is not paid for by Medicaid or Medicare. Women's healthcare was neglected in the many examples of women's healthcare concerns being ignored by providers, or in their difficulty in getting access to specialists.

Implications

These findings suggest numerous implications for promoting reproductive justice. Research, policy, and practice in the field of social work have failed to adequately address historical and contemporary reproductive injustices and their impact on health equity (Alzate, 2009; Gomez et al., 2020; Liddell, 2018). This study begins to address this gap by situating the reproductive healthcare experiences of Indigenous women within the framework of reproductive justice. As described previously, the reproductive justice framework is increasingly being utilized in social work. This has included scholarship describing the congruency with framework and the values of the profession and need for social works to promote reproductive justice (Gomez et al., 2020; Liddell, 2018). Social work has not always promoted reproductive justice in its intervention and research, and in some cases has actively promoted the reproductive oppression (Alzate, 2009; Gomez et al., 2020; Liddell, 2018). The actions to promote reproductive justice that can be taken by social work are many, but some of these options include highlighting the importance of reproductive justice at social work events and conferences, explicitly utilizing this framework in research, integrating topics of reproductive justice in social work curricula, and acknowledging the role of social workers in perpetuating reproductive oppression.

Specific policies that social workers can advocate for to promote reproductive justice that would address some of the barriers highlighted by women can be addressed through healthcare infrastructure changes, such as increased expansion of health insurance coverage; for example, extending Medicaid coverage of pregnant women to a year, instead of the current 60 days. Furthermore, investing in access to additional hospitals and specialists, increased contraceptive options, and culturally-responsive maternal and reproductive healthcare may decrease maternal morbidity and improve Indigenous women's reproductive autonomy. Finally, recognizing the tribal sovereignty of state-recognized tribes is essential in upholding reproductive justice for Indigenous women in the Gulf Coast. Additional research is needed to explore how Indigenous tribes themselves would like these barriers addressed since any interventions or structural changes must meaningfully include and incorporate tribal sovereignty.

Limitations and Future Research

This study has several important limitations which should be noted. For instance, interviews were conducted in English which may have excluded elder tribal members who do not speak English as a first language. As with all qualitative studies, these results are not intended to be generalizable to other Indigenous tribes. Interviews were also only conducted at one point in time, and future studies would benefit from taking a longitudinal approach, which is especially important when exploring topics that change throughout the lifecourse, such as fertility. In addition, although reproductive justice themes emerged from this study, participants were not explicitly asked about reproductive justice/injustice, or their perceptions of this concept. Future studies should explore this topic. Incorporating the voices of those who identify as men, queer women, or outside the gender binary would offer important insights into gender relations and sexual health experiences not mentioned here. The reproductive and sexual experiences of Indigenous men are particularly under-studied, and the existing literature tends to focus primarily on the prevention of STDs/STIs and pregnancy (Rink et al., 2012; Rouner et al., 2015; Shegog et al., 2017). Although the sexual orientation of participants was not particularly probed for, only one participant self-identified as queer, with all other participants only mentioning having male-identified partners. The unique reproductive oppression experiences and justice needs of LGBTIQ individuals are beginning to be explored, although it is an understudied area of research among Indigenous groups (Hunt, 2016; Nixon, 2013; Price & Brettschneider, 2017). Future research should specifically seek out these tribal members since their reproductive needs may be distinct. Additional studies could also include the perspective of healthcare providers and could use quantitative methods to assess fertility barriers and obstacles. Finally, per CAB recommendations, the interviews did not address access to, or experiences with, abortion care, and this is an important area of future exploration.

Conclusion

This study explores barriers to achieving reproductive desires, an important component of the reproductive justice framework. This work addresses an important gap in the literature since although the sterilization of Indigenous women by the IHS has been well documented, this, and other reproductive oppressions have not yet been explored among state-recognized tribes who do not utilize the IHS, and little research explores what other factors impact these women's ability to reach their reproductive goals. Findings of this study reveal that central components of reproductive justice, including the ability to have children, are currently being undermined for the Indigenous women in this study. This study is unique in exploring the family planning desires and goals, and the barriers experienced in achieving these reproductive desires, for women in a Gulf Coast, and a non-federally recognized, Indigenous tribe. Consistent with national literature, women reported experiencing reproductive oppression, such as high rates of sterilizations and hysterectomies, untreated and undiagnosed PCOS and endometriosis, and difficulty in getting treatment for infertility. These results contextualize national trends and suggest that Indigenous women in this study experience reproductive injustices that harm their ability to achieve their reproductive desires. This study is unique in applying the reproductive justice framework to explore barriers related to achieving the reproductive goals of Indigenous women, who are particularly vulnerable to reproductive oppression, and who experience extensive maternal and infant health disparities.

Footnotes

Acknowledgments

The authors thank the members of this tribe for their dedicated work and participation in this research.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the New Orleans Center for the Gulf South at Tulane University, Tulane School of Liberal Arts.

ORCID iD

Jessica L. Liddell

Notes

References

Alexander

G. R.

Wingate

M. S.

Boulet

(2008). Pregnancy outcomes of American Indians: contrasts among regions and with other ethnic groups. Maternal and Child Health Journal, 12(1), 5–11. https://doi.org/10.1007/s10995-007-0295-z

Alzate

M. M.

(2009). The role of sexual and reproductive rights in social work practice. Affilia, 24(2), 108–119. https://doi.org/10.1177/0886109909331695

Barnes

Fledderjohann

(2019). Reproductive justice for the invisible infertile: A critical examination of reproductive surveillance and stratification. Sociology Compass, 14(2). https://doi.org/10.1111/soc4.12745

Bell

A. V.

(2014). Misconception: social class and infertility in America. Rutgers University Press.

Burnette

C. E.

Sanders

Butcher

H. K.

Rand

J. T.

(2014). A toolkit for ethical and culturally sensitive research: An application with Indigenous communities. Ethics and Social Welfare, 8(4), 364–382. https://doi.org/10.1080/17496535.2014.885987

Cackler

C. J.

Shapiro

V. B.

Lahiff

(2016). Female sterilization and poor mental health: rates and relatedness among American Indian and Alaska Native women. Women's Health Issues, 26(2), 168–175. https://doi.org/10.1016/j.whi.2015.10.002

Centers for Disease Control (CDC) (2020). Pregnancy mortality surveillance system.https://www.cdc.gov/reproductivehealth/maternal-mortality/pregnancy-mortality-surveillance-system.

Chavez

L. R.

(2004). A glass half empty: Latina reproduction and public discourse. Human Organization, 63(2), 173–188. https://doi.org/10.17730/humo.63.2.hmk4m0mfey10n51k

Colen

(1995). ‘Like a mother to them’: stratified reproduction and West Indian child care workers and employers in New York. In Ginsberg

F. D.

Rapp

(Eds.), Conceiving the new world order: The global politics of reproduction (pp. 78-102). University of California Press.

10.

Cordova-Marks

Fennimore

Bruegl

Erdrich

(2020). What should physicians consider about American Indian/Alaska Native women’s reproductive freedom? AMA Journal of Ethics, 22(10), 845–850. https://doi.org/10.1001/amajethics.2020.845

11.

Craig

L. B.

Peck

J. D.

Janitz

A. E.

(2019). The prevalence of infertility in American Indian/Alaska natives and other racial/ethnic groups: National Survey of Family Growth. Paediatric and Perinatal Epidemiology, 33(2), 119–125. https://doi.org/10.1111/ppe.12538

12.

Curtis

(2017). Inconceivable: How barriers to infertility treatment for low-income women amount to reproductive oppression. Georgetown Journal on Poverty Law and Policy, 25(2), 323–342. Retrieved February 18, 2022, from https://www.law.georgetown.edu/poverty-journal/in-print/volume-25-number-2-winter-2018/inconceivable-how-barriers-to-infertility-treatment-for-low-income-women-amount-to-reproductive-oppression/

13.

Davis

(2003). Racism, birth control and reproductive rights. In Lewis

Mills

(Eds.), Feminist postcolonial theory: A reader (pp. 353-367). Routledge.

14.

Davis

(2014). Who should reproduce? Perpetuating archaic value judgments of procreation in the patient protection and affordable care act. Scholar, 16, 255–471. https://heinonline.org/HOL/LandingPage?handle=hein.journals/schom16&div=14&id=&page=

15.

Dovidio

J. F.

Fiske

(2012). Under the radar: How unexamined biases in decision-making processes in clinical interactions can contribute to health care disparities. American Journal of Public Health, 102(5), 945–952. https://doi.org/10.2105/AJPH.2011.300601

16.

Feagin

Bennefield

(2014). Systemic racism and US health care. Social Science & Medicine, 103, 7–14. https://doi.org/10.1016/j.socscimed.2013.09.006

17.

Flavin

(2008). Our bodies, our crimes: The policing of women’s reproduction in America. New York University Press.

18.

Glenn

E. N.

(2015). Settler colonialism as structure: A framework for comparative studies of U.S. Race and gender formation. Sociology of Race and Ethnicity, 1(1), 52–72. https://doi.org/10.1177/2332649214560440

19.

Gomez

A. M.

Downey

M. M.

Carpenter

Leedham

Begun

Craddock

Ely

(2020). Advancing reproductive justice to close the health gap: A call to action for social work. Social Work, 65(4), 358–367. https://doi.org/10.1093/sw/swaa034

20.

Gould

K. H.

(1984). Black women in double jeopardy: A perspective on birth control. Health & Social Work, 9(2), 96–105. https://doi.org/10.1093/hsw/9.2.96

21.

Greil

A. L.

Slauson-Blevins

McQuillan

(2010). The experience of infertility: A review of recent literature. Sociology of Health & Illness, 32(1), 140–162. https://doi.org/10.1111/j.1467-9566.2009.01213.x

22.

Gurr

(2014). Reproductive justice: The politics of health care for native American women. Rutgers University Press.

23.

Harris

L. H.

Wolfe

(2014). Stratified reproduction, family planning care and the double edge of history. Current Opinion in Obstetrics and Gynecology, 26(6), 539–544. https://doi.org/10.1097/GCO.0000000000000121

24.

Hill-Collins

(1990). Black feminist thought: knowledge, consciousness, and the politics of empowerment. Unwin Hyman.

25.

Hill-Collins

(2004). Black sexual politics: African Americans, gender, and the new racism. Routledge.

26.

Hunt

(2016). An introduction to the health of two-spirit people: historical, contemporary and emergent issues. National Collaborating Centre for Aboriginal Health.

27.

Janitz

A. E.

Peck

J. D.

Craig

L. B.

(2019). Racial/ethnic differences in the utilization of infertility services: A focus on American Indian/Alaska natives. Maternal & Child Health Journal, 23(1), 10–18. https://doi.org/10.1007/s10995-018-2586-y

28.

Jones

D. S.

(2006). The persistence of American Indian health disparities. American Journal of Public Health, 96(12), 2122–2134. https://doi.org/10.2105%2FAJPH.2004.054262

29.

Kluchin

R. M.

(2011). Fit to be tied: sterilization and reproductive rights in America, 1950-1980. Rutgers University Press.

30.

Kozhimannil

K. B.

Interrante

J. D.

Tofte

A. N.

Admon

L. K.

(2020). Severe maternal morbidity and mortality among Indigenous women in the United States. Obstetrics and Gynecology, 135(2), 294. https://doi.org/10.1097/AOG.0000000000003647

31.

Kreitzer

Smith

Kane

K. A.

Saunders

(2020). Affordable but inaccessible? Contraception deserts in the US states. Journal of Health Politics, Policy and Law, 46(2), 277–304. https://doi.org/10.1215/03616878-8802186

32.

Krieger

Fee

(1994). Man-made medicine and women's health: The biopolitics of sex/gender and race/ethnicity. International Journal of Health Services, 24(2), 265–283. https://doi.org/10.2190/LWLH-NMCJ-UACL-U80Y

33.

Lawrence

(2000). The Indian health service and the sterilization of Native American women. American Indian Quarterly, 24(3), 400–419. https://doi.org/10.1353/aiq.2000.0008

34.

Liddell

J.L.

(2018). Reproductive justice and the social work profession: Common grounds and current trends. Affilia: Journal of Women and Social Work, 34(1), 99–115. https://doi.org/10.1177/0886109918803646

35.

Liddell

J. L.

(2020). Barriers to Healthcare Access for a Native American Tribe in the Gulf Coast Region of the United States. In J. J.

Kronenfeld

(Ed.), Race, Ethnicity, Gender and Other Social Characteristics as Factors in Health and Health Care Disparities (Research in the Sociology of Health Care) (Vol. 38, pp. 73–94).

36.

Liddell

J. L.

Kington

S. G.

(2021). "Something was attacking them and their reproductive organs”: Environmental Reproductive Justice in an Indigenous tribe in the United States Gulf Coast. International Journal of Environmental Research and Public Health, 18(2), 1–17. https://doi.org/10.3390/ijerph18020666

37.

Liddell

J. L.

Lilly

J. M.

(2022). Healthcare Experiences of Uninsured and Under-Insured American Indian Women in the United States. Global Health Policy and Research. https://doi.org/10.1186/s41256-022-00236-4

38.

Liddell

J. L.

Mckinley

C. E.

(2021). “They always took care of me”: The resilience, community, and family support of U.S. Indigenous women in the Gulf South in accessing healthcare. Routledge Handbook on Indigenous Resilience (pp. 180–194). Abingdon, United Kingdom: Routledge.

39.

Milne

Oberle

(2005). Enhancing rigor in qualitative description. Journal of Wound Ostomy & Continence Nursing, 32(6), 413–420. https://doi.org/10.1097/00152192-200511000-00014

40.

Nixon

(2013). The right to (trans) parent: A reproductive justice approach to reproductive rights, fertility, and family-building issues facing transgender people. William and Mary Journal of Race, Gender and Social Justice, 20(1), 73–103. https://scholarship.law.wm.edu/wmjowl/vol20/iss1/5

41.

Norman

R. J.

Dewailly

Legro

R. S.

Hickey

T. E.

(2007). Polycystic ovary syndrome. The Lancet, 370(9588), 685–697. https://doi.org/10.1016/S0140-6736(07)61345-2

42.

Price

Brettschneider

(2017). Queering reproductive justice: toward a theory and praxis for building intersectional political alliances. In Brettschneider

Burgess

Keating

(Eds.), LGBTQ Politics. New York University Press.

43.

QSR International (2015). NVivo qualitative data analysis software (Version 11). https://www.qsrinternational.com/nvivo/.

44.

Rink

FourStar

Medicine Elk

Dick

Jewett

Gesink

(2012). Young Native American men and their intention to use family planning services. American Journal of Men's Health, 6(4), 324–330. https://doi.org/10.1177/1557988312439226

45.

Roberts

(2014). Killing the black body: race, reproduction, and the meaning of liberty. Vintage Books.

46.

Roth

Ainsworth

S. L.

(2014). “If they hand you a paper, you sign it”: A call to end the sterilization of women in prison. Hastings Women's LJ, 26(1), 7–49. https://repository.uchastings.edu/hwlj/vol26/iss1/3

47.

Rouner

Long

Bubar

Vernon

Aungie

(2015). Communication about sexually transmitted infections among rural and urban Native American youth. Howard Journal of Communications, 26(2), 172–192. https://doi.org/10.1080/10646175.2015.1009195

48.

Rutman

Taualii

Ned

Tetrick

(2012). Reproductive health and sexual violence among urban American Indian and Alaska Native young women: Select findings from the National Survey of Family Growth (2002). Maternal and Child Health Journal, 16(2), 347–352. https://doi.org/10.1007/s10995-012-1100-1

49.

Saldaña

(2014). Qualitative data analysis strategies. In P. Leavy (Ed.), The Oxford handbook of qualitative research. Oxford University Press.

50.

Shegog

Rushing

S. C.

Gorman

Jessen

Torres

Lane

T. L.

Gaston

Revels

T. K.

Williamson

Peskin

M. F.

D'Cruz

Tortolero

Markham

C. M.

(2017). NATIVE-It’s your game: adapting a technology-based sexual health curriculum for American Indian and Alaska Native youth. Journal of Primary Prevention, 38(1-2), 27–48. https://doi.org/10.1007/s10935-016-0440-9

51.

SisterSong (2006). Understanding reproductive justice. http://www.sistersong.net/publications_and_articles/Understanding_RJ.pdf .

52.

Smith

(2004). Beyond the politics of inclusion: violence against women of color and human rights. Meridians: Feminism, Race, Transnationalism, 4(2), 120–124. https://www.muse.jhu.edu/article/168473.

53.

Smith

(2005b). Beyond pro-choice versus pro-life: Women of color and reproductive justice. NWSA Journal, 17(1), 119–140. https://www.jstor.org/stable/4317105

54.

Smith

(2005a). Rape and the war against Native women. In Hernández-Avila

(Ed.), Reading native American women: critical/creative representations. Rowman Altamira.

55.

Solinger

(2013). Reproductive politics. Oxford University Press.

56.

Stellar

Garcia-Moreno

Temmerman

van der Poel

(2016). A systematic review and narrative report of the relationship between infertility, subfertility, and intimate partner violence. International Journal of Gynecology and Obstetrics, 133(1), 3–8. https://doi.org/10.1016/j.ijgo.2015.08.012

57.

Stone

(2018). Baby bust: Fertility is declining the most among minority women. Institute for Family Studies. https://ifstudies.org/blog/baby-bust-fertility-is-declining-the-most-among-minority-women.

58.

Sullivan-Bolyai

Bova

Harper

(2005). Developing and refining interventions in persons with health disparities: The use of qualitative description. Nursing Outlook, 53(3), 127–133. https://doi.org/10.1016/j.outlook.2005.03.005

59.

Theobald

(2019). Reproduction on the reservation: pregnancy, childbirth, and colonialism in the long twentieth century. UNC Press Books.

60.

Torpy

S. J.

(2000). Native American women and coerced sterilization: On the trail of tears in the 1970s. American Indian Culture and Research Journal, 24(2), 1–22. https://doi.org/10.17953/aicr.24.2.7646013460646042

61.

U.S. Department of Health and Human Services, Office of Minority Health (2016). Profile: American Indian/Alaska Native. https://minorityhealth.hhs.gov/omh/browse.aspx?lvl=3&lvlid=62.

62.

Wallace

Dyer

Felker-Kantor

Benno

Vilda

Harville

Theall

(2020). Maternity care deserts and pregnancy-associated mortality in Louisiana. Women's Health Issues, 31(2), 122–129. https://doi.org/10.1016/j.whi.2020.09.004

63.

Wolfe

(2006). Settler colonialism and the elimination of the Native. Journal of Genocide Research, 8(4), 387–409. https://doi.org/10.1080/14623520601056240

64.

Wong

C. A.

Gachupin

F. C.

Holman

R. C.

MacDorman

M. F.

Cheek

J. E.

Holve

Singleton

R. J.

(2014). American Indian and Alaska native infant and pediatric mortality, United States, 1999–2009. American Journal of Public Health, 104(3), 320–328. https://doi.org/10.2105/AJPH.2013.301598

65.

World Health Organization (2020). Infertility. https://www.who.int/news-room/fact-sheets/detail/infertility.

Barriers to Achieving Reproductive Justice for an Indigenous Gulf Coast Tribe

Abstract

Keywords

Introduction

Background

Reproductive Injustices

Coercive contraception and forced sterilization

Inadequate fertility care

Limited access to reproductive health care

Conceptual Frameworks

Settler colonialism

Reproductive justice

Purpose

Methods

Research Design

Setting and Participants

Data Collection

Data Analysis

Results

“I Had A Hysterectomy, But I Always Thought About That Fourth Child That I Never Had That I Wanted”: High Prevalence of Hysterectomy or Sterilization

“So Many More People Are Having so Much Trouble Having Babies”: Experiences With Infertility Common

“I Always Had Like Women's Problems”: High Frequency of PCOS or Endometriosis

Discussion

Implications

Limitations and Future Research

Conclusion

Footnotes

Acknowledgments

Declaration of Conflicting Interests

Funding

ORCID iD

Notes

References