Menopause experience among people with criminal legal system involvement

Abstract

Objective

We aim to describe menopause symptom burden during and after incarceration for the growing population of women with a history of criminal legal system (CLS) involvement.

Methods

We used Menopause Rating Scale symptom data from the final year of a multi-wave cohort of adult women with a history of CLIS involvement in three US cities. We also used qualitative semi-structured interview data about menopause treatment in the community from adult women from five US states who experienced menopause during their CLS involvement. Descriptive statistics and qualitative thematic analysis were used to triangulate findings.

Results

Of 507 women, 349 (68.8%) reported menstrual cycle data. The mean age was 46. Women were either premenopausal (n=151), early perimenopausal (n=25), late perimenopausal (n=10), or postmenopausal (n=163). Symptoms were common and differed by group. The most severe symptoms in pre-, early peri-, late peri-, and post-menopause were joint pain (2.27, SD 1.12), sleep problems (2.44, SD 1.13), joint pain (2.80, SD 0.45), and hot flashes (2.42, SD 1.07), respectively.

The qualitative analysis included 29 semi-structured interviews focused on access to menopause treatment in the community during or after CLS involvement. Primary themes were logistical barriers (lack of provider, insurance/financial, transportation) and quality of care barriers (poor provider communication skills, lack of provider knowledge).

Conclusions

Women with a history of CLS involvement commonly experience menopausal symptoms, some of which are severe. These symptoms are experienced in the context of CLS involvement that may amplify barriers to accessing care.

Introduction

The number of people involved in the United States (US) criminal legal system (CLS) continues to grow, with significant increases within older adult and female populations making their concerns increasingly important. Criminal legal involvement in the US occurs on a massive scale, with 1,827,600 people incarcerated at the end of 2022, and another 3,668,800 people on probation or parole in the community.¹ The number of women involved in the CLS has been growing for decades² with the incarceration increases for women from 2021 to 2022 nearly double the overall increases in incarceration (5% vs 3% overall).³ Additionally, older adults make up an increasingly large portion of the population experiencing incarceration.⁴ This growth is mirrored in the adult population in state and federal prisons with a 4% increase among those 55 years or older.¹ With an increasingly older female population involved in the CLS, more focus on their gender-specific health and health-related experiences is warranted. However, there remains limited information about the experience of menopause among women with CLS involvement.

Recent work has highlighted significant disparities in menopausal care and treatment across many populations, including those experiencing incarceration.⁵ These disparities are heightened for women experiencing incarceration due to barriers to accessing menstrual hygiene products, environmental conditions (i.e. unable to change temperature settings), lack of social support, and barriers to accessing appropriate medical care.^6–8 In one state prison system, only 3.6% of women experiencing menopause were prescribed hormone therapy, which is lower than the general population and highlights potential disparities in prescribing and availability.⁹ Black and Hispanic women are imprisoned at 1.3–1.7 times the rate of White women. Some studies have suggested that vasomotor symptoms differ by race/ethnicity with higher absolute rates in Black women, though the reason for this is likely complex including environmental impact, a long history of structural racism, and cultural differences in reporting symptoms.^10,11 The foundations of the criminal legal system in structural racism and resulting disparate rates of incarceration mean that disparities that occur as a result of CLS involvement likely exacerbate differences in menopausal symptoms and menopause treatment disparities that Black and Hispanic women experience in the community.¹²

There is a paucity of studies describing menopausal symptoms during and after incarceration, especially using mixed methods. Previous work, much of it from our team, has investigated menopause in populations with a history of CLS involvement using primarily qualitative methods.^2,6,13 This study expands that work using mixed methods to describe and contextualize menopausal symptom burden and treatment access during and after incarceration.

Methods

Study design and population.

The quantitative data for this analysis was collected during the final year of a study of adult women with a history of CLS involvement in three US cities. This parent study, Tri-City Cervical Cancer Prevention Study among Women in the Justice System (2019–2024; # R01CA226838), included participants recruited from Birmingham, Alabama; Kansas City, Kansas/Missouri; and Oakland, California. A full description of recruitment methods has been detailed previously.^14–16 Tri-City survey participants were women ages 18 and older with a history of CLS involvement including jail, prison, probation, and parole. Women who were currently incarcerated were excluded. Surveys were administered in person or by telephone by trained study staff at the three study sites. The full Tri-City survey included 288 items assessing demographic characteristics, cervical cancer screening, cervical health beliefs, and health services access and use. Eleven of these questions evaluated menopausal symptoms.

A separate series of qualitative interviews were conducted between September 2020 and September 2023 with participants from five states (AL, CA, KS, MO, and NC) across the United States. Qualitative interview participants were women ages 18 and older in the community with experiences of menopause symptoms during their criminal legal involvement and were recruited from each of the Tri-City study sites and from community-based organizations serving women with CLS involvement in North Carolina. The full recruitment strategy for the qualitative interviews was also reported previously.¹³ We collected limited demographic information, specifically race and educational attainment, from these participants due to the sensitive nature of the topic of history of criminal system involvement. To minimize the risk of deductive disclosure, we only reported aggregate demographic data without any cross-tabulation. Interviews were conducted using phone or video platforms and were recorded and transcribed. If recording was declined, in depth contemporaneous notes were taken and used in place of a transcript.

Quantitative Measures.

Demographic variables included age (years), self-reported race and ethnicity (White, Black, Asian/Pacific islander, American Indian/Alaskan Native, Hispanic, and Other Identities), educational attainment (having at least a high school diploma/GED or not), work status (working regularly either part- or full-time or not), insurance status (insured or uninsured), housing status (having steady housing or not), partner status (currently having a steady partner or not), and children under 18 living in the household (yes or no). For those participants who marked “other identities” in response to race/ethnicity, further definition of their race/ethnicity was not collected. To approximate menopausal status, this analysis used the frequency of menstrual cycles, reported as monthly, every 1–2 months, gaps in menses of 8 weeks or more, no menses in 12 months. Participants reported causes of menopause (defined as no menses in 12 months or more) including natural menopause, surgical causes of menopause (hysterectomy and oophorectomy), chemotherapy/radiation, contraception, substance use, or pregnancy. Menopause symptoms were evaluated using the Menopause Rating Scale (MRS), a widely used 11-item questionnaire with a yes/no indicator for each symptom and a severity rating of mild (1), moderate (2), severe (3), or very severe (4) to evaluate the severity of common menopausal symptoms.¹⁷

Quantitative Analysis.

We calculated descriptive statistics (mean, standard deviation) for demographic variables in the full Tri-City sample and in the subsample reporting menstrual characteristics. For this analysis, we limited the sample to those who responded about their menstrual cycles in the past year. We reported the frequency and percent of respondents reporting each menopausal symptom by category of menstrual cycle frequency and the mean and standard deviation of the severity rating for those with that symptom. All “don’t know” and “prefer not to answer” responses were marked as missing data. We calculated descriptive statistics for all measures.

Qualitative Methods.

We performed qualitative analysis utilizing an inductive thematic approach and the Rigorous and Accelerated Data Reduction (RADaR) technique.¹⁸ Each participant was assigned a pseudonym. Themes related to experiences of menopause symptoms during incarceration have been reported elsewhere.¹³ We report here on themes related to menopause care in the community to understand the implications of the menopause symptom quantitative data for our participants.

Ethical Review.

All participants provided informed consent for their survey and/or qualitative interview participation. The Tri-City study protocol was reviewed and approved by the University of Kansas Medical Center (KUMC) Institutional Review Board with reliance agreements between KUMC and the University of Alabama at Birmingham and KUMC and RTI International. The qualitative interview protocol was reviewed and approved by the University of North Carolina at Chapel Hill Institutional Review Board.

Results

Quantitative findings.

The final wave of the Tri-City survey collection included 507 women with 349 women (68.8%) reporting menstrual cycle data. Demographic characteristics for the full sample and for the subsample reporting menstrual cycle data are shown in Table 1. The mean age of participants in both the full sample and the subsample was 46 years. In the subsample, over half (61%) identified as Black and three quarters (77%) had a high school diploma/GED or higher level of education. Eighty-two percent reported having health insurance at the time of the survey.

Table 1.

Demographic and menstrual characteristics of the full Tri-City sample (n=507) and the subsample reporting menstrual cycle data (n=348).

	Tri-City Sample (n=507)			Menstrual Data Subsample (n=348)
Demographics	Mean/N	SD/%	% of Missinga	Mean/N	SD/%	% of Missing
Age	45.99	11.7	3.0%	46.39	11.74	0.0%
Race b			0.4%			0.005%
White	159	31.4%		98	28.1%
Black	288	56.8%		214	61.3%
Asian Pacific Islander	5	1.0%		2	0.6%
American Indian/Alaskan Native	2	0.4%		2	0.6%
Hispanic	21	4.1%		15	4.3%
Other identities	11	2.2%		9	2.6%
Multiracial	19	3.7%		7	2.0%
Education c	382	75%	0.4%	268	77.0%	0.0%
Job c	148	29%	1.0%	123	35.3%	1.4%
Partner c	254	50%	0.6%	168	48.3%	2.3%
Housing c	377	74%	2.8%	282	81.3%	0.9%
Children c	163	32%	1.6%	13	35.3%	0.0%
Insurance c	348	69%	1.2%	286	82.2%	0.6%
Menstrual Cycles						0.0%
Monthly				151	43.4%	0.0%
Irregular, 1–2 month				25	7.2%
Irregular, ≥ 8 weeks				10	2.9%
No periods in the last year d				162	46.6%	0.0%
Natural menopause				105	64.8%
Surgery or Chemo/Radiation				34	21.0%
Contraception				21	13.0%
Substance use				2	1.2%

^a:Percentage of missing calculated based on total sample size n = 507 unless stated otherwise

^b:Race/Ethnicity check ALL that apply, total percentage may exceed 100%

^c:Stability variables all dichotomized. Education = High school grad/GED or higher degree; Job = Working regularly as full/part time; Partner = Currently have a steady partner; Housing = Hava a steady housing; Children = Have child(ren) under 18 live in household; Insurance = Currently have insurance

^d:Percentage of the following sub-category calculated based on n = 162

Based on the frequency of menstrual cycles, of the 349 women in the subsample, 43% were premenopausal (monthly menses, n=151), 7% were early perimenopausal (every 1–2 month menses, n=25), 3% were late perimenopausal (gaps in menses of 8 weeks or more, n=10), and 47% were postmenopausal (no menses in 12 months, n=163). Of the 162 women reporting no menses for 12 months, 105 (65%) of them reported going through natural menopause. The next two most common causes of lack of menses were surgical or chemotherapy/radiation (21%) and a contraceptive method that prevented menses (13%).

Table 2 shows frequency and severity of menopausal symptoms among the 349 women in the menstrual data subsample. For the 151 premenopausal participants, symptoms overall were less frequent with the most common symptoms being increased anxiety (48%), exhaustion (47%), irritability (47%), and depressed mood (46%). The most common symptoms for early perimenopausal participants were exhaustion (61%), increased anxiety (56%), irritability (52%), and hot flashes (48%). For late perimenopausal women, the most common symptoms were hot flashes (80%), sleep problems (70%), depressed mood (60%), and increased anxiety (60%). The most common symptoms experienced by postmenopausal women were hot flashes (75%), irritability (68%), sleep problems (66%), and depressed mood (64%).

Table 2.

Menopausal symptoms and severity among women in the Tri-City subsample reporting menstrual cycle data (n=349).

Menses frequency	Monthly (n = 151)				Every 1–2 month (n = 25)				8 weeks or more (n = 10)				None in last year (n = 163)
	Reported		Severity		Reported		Severity		Reported		Severity		Reported		Severity
	n	%a	Mean (SD)b	n	n	%	Mean (SD)	n	n	%	Mean (SD)	n	n	%	Mean (SD)	n
Hot flash	49	32.5	1.81 (0.94)	48	11	47.8	2.20 (1.03)	10	8	80	2.25 (0.71)	8	123	75.5	2.42 (1.07)	122
Heart	38	25.2	1.49 (0.69)	37	6	26.1	1.60 (0.55)	5	2	20	2.00 (1.41)	2	53	32.5	1.44 (0.75)	52
Sleep problems	63	41.7	2.08 (0.94)	60	10	43.5	2.44 (1.13)	9	7	70	2.00 (1.29)	7	108	66.3	2.17 (1.03)	107
Depressive mood	70	46.4	2.03 (0.99)	68	10	43.5	2.12 (0.83)	8	6	60	1.50 (0.84)	6	105	64.4	2.13 (1.00)	103
Irritability	72	47.7	2.13 (0.97)	71	12	52.2	1.90 (0.88)	10	4	40	2.25 (0.96)	4	112	68.7	2.19 (1.02)	109
More anxiety	73	48.3	2.20 (0.86)	71	13	56.5	2.27 (0.65)	11	6	60	1.83 (0.75)	6	103	63.2	2.18 (1.00)	100
Exhaustion	72	47.7	2.21 (0.95)	70	14	60.9	1.79 (0.89)	14	5	50	2.20 (0.84)	5	103	63.2	1.99 (0.91)	101
Sex problems	41	27.2	2.17 (1.06)	40	5	21.7	2.20 (0.45)	5	4	40	2.25 (1.50)	4	57	35	2.14 (0.96)	56
Bladder problems	40	26.5	1.82 (0.93)	40	9	39.1	2.00 (0.93)	8	3	30	2.33 (1.15)	3	64	39.3	2.02 (1.02)	64
Dryness	22	14.6	1.68 (0.95)	22	2	8.7	1.50 (0.71)	2	2	20	2.00 (0.00)	2	33	20.2	2.03 (0.98)	33
Joint pain	53	35.1	2.27 (1.12)	52	9	39.1	1.78 (1.09)	9	5	50	2.80 (0.45)	5	84	51.5	2.39 (1.00)	83

^a:Percentage calculated with those reported severity score > 0

^b:Range of severity is 1–4 (mild to very severe)

The most severe symptom rating for each group of women was between moderately severe and severe (i.e., the mean fell between 2 and 3 on the MRS). For premenopausal women, this symptom was joint pain (2.27, SD 1.12); for early perimenopausal women, it was sleep problems (2.44, SD 1.13); for late perimenopausal women, the most severe symptom was joint pain (2.80, SD 0.45); for postmenopausal women, it was hot flashes (2.42, SD 1.07).

Qualitative results.

Of the 29 qualitative interview participants, half of participants (52%) self-identified as Black and none identified as Hispanic/Latina. The majority of participants (58%) had at least a 12^th grade level of education. We focused on the major theme of barrier to accessing menopausal care in the community and identified two specific barriers: (1) logistical barriers (i.e., lack of established provider and/or limited appointment times, insurance status, financial barriers, transportation barriers); and (2) difficulty with clinician communication.

Logistical barriers.

Multiple participants noted either not having a provider to reach out to about their menopausal symptoms, restricted appointment times that limited access due to scheduling conflicts, or long wait times to get an appointment. For instance, one participant stated:

“One of the clinics around here, the best one where they actually have doctors from hospitals come and they volunteer, but you have to go after five o’clock….And if you get in, then you know, you’re really good. But if you don’t, you try to keep going so… that makes it hard.”

- Melissa

Some participants mentioned lack of insurance as a barrier to accessing care for their menopausal symptoms.

Interviewer: “Did you ever think about seeing a doctor for menopause?”

Wendy: “No. When I bled for 57 straight days, it did occur to me. But, I didn’t have insurance.”

Others brought up financial concerns about the cost of accessing medical care and the cost of medications, separate from insurance coverage.

Interviewer: “Do you think they would treat menopause?”

Melissa: “I honestly, I don’t know. They may write a prescription, but I wouldn’t be able to afford it.”

Difficulty with clinician communication.

Multiple participants mentioned clinicians not believing that their symptoms were real, or that the clinician didn’t accept their diagnosis of menopause. They cited this as a reason that they did not continue to access menopausal care in the community. Other participants also described being told somewhat of the opposite, with the diagnosis or term ‘menopause’ or ‘premenopausal’ being used during their care without further clarification, explanation, or treatment options. For example, one participant said:

“I had went to my doctor and I told her, I said ‘I think I’m going through menopause.’ She said ‘you’re too young to be having menopause.’ How old was I, what, 45 then. She said ‘you’re too young to be having menopause.’ I said ‘I’m having something.’ So, she did some bloodwork and when it came, she said ‘well, you are having menopause.’ Menopause ain’t no joke though”

- Rebecca

Another participant noted:

“Once I continued to not have a period, I actually, I went to the doctor, and I wasn’t pregnant, but they told me that I was premenopausal, I think they told me. And, you know, they never really said nothing else about it.”

- Sandra

Discussion

We found that menopausal symptoms were commonly experienced by peri- and postmenopausal women, and symptoms varied depending on the phase of menopause. The worst symptoms also differed depending on the phase of menopause, but all were categorized by participants as moderately severe to severe. Participants in the qualitative interview group emphasized multiple barriers to accessing menopausal care in the community, including logistical and financial challenges, and substantial gaps in the quality of care related to menopause due to clinicians either not listening, not explaining, or not offering treatment for menopausal symptoms.

These data build on prior studies describing a substantial burden of menopause symptoms and challenges with menopause care during incarceration.¹³ These issues continue in the community whether women have left a carceral setting or interacted with the criminal legal system in a community-based setting. Other studies have highlighted disparities in menopausal symptom burden experienced by Black women in the United States, and proxies such as socio-economic status, differential access to medical care, and education level were used to gain indirect insight to how systemic racism impacts these women’s experience.¹¹ Our data also support the observation that the kinds of treatment disparities experienced by Black and Hispanic women in the general population may also affect women in the community with histories of criminal legal involvement in an additive or intersectional fashion.⁵ We discerned evidence of potential intersectional challenges in women’s reports of not feeling heard by clinicians and being offered limited education related to menopause treatment options.⁵

Strengths of this study include the mixed methods approach that describes the prevalence of menopausal symptom burden and severity in the population of women with a history of CLS involvement, while contextualizing that description with real-world barriers to accessing care for such symptoms. Additionally, those surveyed and interviewed were a diverse group of women from multiple cities across the US, making our results more generalizable to more women who have a history of CLS involvement. Limitations include the relatively small quantitative sample size, which limited our ability to conduct further correlational or predictive modeling analyses.

This research highlights the need for empathic and caring communication by healthcare professionals when working with women with a history of CLS involvement. Programs such as peer navigators, transportation assistance, and navigators to help women engage in care, as has been demonstrated for chronic disease post-incarceration, could help bridge these gaps and improve access to needed menopause care, though more is needed to address the quality of care.^19,20 Improved quality means training or guidelines to assure that clinicians screen women for menopausal symptoms, support them to feel comfortable discussing those symptoms, and offer all potential treatment options, regardless of their CLS status, current or past. Broader policy initiatives such as Medicaid expansion hold tremendous potential to improve insurance coverage for women with menopausal symptoms below the age of Medicare availability but without other insurance coverage.

Conclusion

Women with a history of criminal legal system involvement commonly experience menopausal symptoms. Many report symptoms that are moderately severe to severe. At the same time, these women experience multiple and unique barriers in access to care for genitourinary symptoms of menopause including both logistic and quality of care obstacles. Although further research is necessary, even this formative work has policy implications. The findings highlight, for example, the benefits of both Medicaid expansion and Medicaid waivers that facilitate enrollment prior to a woman’s returning to the community from incarceration, both of which can increase access to menopause care and mitigate menopause disparities for women with histories of criminal legal system involvement.