Personal Menstrual Health Knowledge in Individuals With Intellectual Disabilities

ABSTRACT

Background

Individuals with intellectual disabilities are at risk of having poor health literacy related to menstrual health due to persistent barriers in accessing education, healthcare, and tailored resources; however, no research has explored this.

Objective

The primary objective of this study is to assess menstrual health knowledge in individuals with intellectual disabilities.

Method

A cross‐sectional survey design was used. Data were collected from 75 Special Olympics athletes (age 37.3 years) using a subset of questions from the Socio‐Sexual Knowledge and Attitudes Test‐Revised (SSKAAT‐R).

Results

The final analyses included 72 participants. Total scores on the SSKAAT‐R ranged from 0–8, with a median total score of 5. Few participants (n = 25; 35%) were able to correctly respond to questions related to hygiene practices, with 65% (n = 47) responding incorrectly.

Conclusion

Future research should focus on addressing the critical need for inclusive and accessible menstrual health education and resources for this population.

Lay Summary

• The study found that people with intellectual disabilities have some understanding of their menstrual health.

• The findings showed that few individuals with intellectual disabilities understand topics related to menstrual health hygiene practices and menopause.

• Lack of understanding and knowledge of these topics can put people with intellectual disabilities at risk of poor health outcomes.

• This study is one of the first of its kind and the results can be used to develop evidence informed resources about menstrual health for those with intellectual disabilities.

1. Introduction

Menstrual health spans from pre‐menarche to post‐menopause and refers to a state of complete physical, mental, and social well‐being in relation to one's menstrual cycle (Hennegan et al. 2021; Worl Health Organization 2022). The menstrual cycle is an important—though often overlooked—vital sign, providing ongoing and regular information about one's overall health (Popat et al. 2008). Unfortunately, our understanding of the menstrual cycle and menstrual health, particularly when considering individuals with intellectual disabilities (ID), is limited. For those with ID, menstrual health inequity is the norm, as they lack access to appropriate education, healthcare, and resources related to menstrual health (Rodgers and Lipscombe 2005). Due to assumptions related to cognitive capacity, decisions related to menstrual health are often relegated to caregivers or surrogate decision makers (Sullivan and Heng 2018). This can complicate the ability of those with ID to access care or support for menstrual health in a timely manner. These concerns could be addressed by fostering the development of health literacy related to menstrual health in those with ID.

Health literacy and being health literate provides an individual with the ability to be responsible for their own health. It is driven by one's personal knowledge and competencies related to one's health (World Health Organisation 2022). Being health literate allows one to understand the contextual factors that may impact one's own health and being aware of how and when to address said factors (Coughlin et al. 2020). A health literacy model by Sørensen et al. (2012) suggests that health literacy is driven by four core competencies: (1) Understand, referring to one's ability to comprehend the information; (2) Access, or the ability to find and obtain health information; (3) Appraise, meaning the ability to interpret and/or evaluate health information; and (4) Apply, when one has the ability to use the information to make informed decisions around one's health. Health literacy is a necessity, allowing individuals to be autonomous regarding their own health and well‐being. It is individually driven, impacted by one's cognitive abilities, social skills, emotional state, and physical condition. Deficits in any of these areas can impact the degree to which one can develop their health literacy. Notably, low levels of personal knowledge related to health can significantly impact one's overall health literacy (World Health Organisation 2022).

Related to menstrual health, low levels of knowledge, in turn resulting in low health literacy, may increase the risk of misdiagnosis or delayed diagnosis of menstrual health conditions (Coughlin et al. 2020; Halverson et al. 2013). It may result in more advanced disease presentation, delayed treatment, and poorer outcomes (Berkman et al. 2011; Koay et al. 2012). Conversely, a high degree of knowledge and being health literate related to menstrual health enables individuals to: (1) recognise when their menstrual health differs from normal patterns, and (2) advocate for appropriate treatment and care (Sørensen et al. 2012). For individuals with ID, who often experience challenges in intellectual functioning, as well as in social, adaptive, and cognitive domains (Schalock et al. 2021), development of health literacy can be difficult. Meaning that adequate support is essential. Traditional menstrual health information and accompanying messaging is rarely if ever designed to support women with ID. Therefore, educational resources and targeted messaging (LeBlanc 2024) designed specifically with this population in mind are imperative to improve accessibility and competency (Chinn 2017; Terras et al. 2021).

In 2025, St. John and colleagues examined knowledge and understanding of menstrual health among women who were Special Olympics (SO) athletes. The study, which included 22 participants, found that SO athletes had limited understanding and knowledge related to menstrual health. Knowledge surrounding menstrual hygiene and menopause was especially low (St. John et al. 2025). These findings were concerning when considering the long‐term health of this population. However, the small sample size restricted the ability to statistically examine relationships between health literacy and variables such as age, living situation, and support level, which have been found to influence health literacy (Kwon and Kwon 2025).

Building upon this previous work, the current study examined personal knowledge related to menstruation and menstrual health in individuals with ID and examined the impact of age and support level on personal knowledge related to menstrual health.

2. Methods

2.1. Study Population and Procedure

The current study employed a cross‐sectional survey design. Participants were included in the study if they met the following criteria: (1) have or had a uterus; (2) experience menses at least once; (3) were at least 18 years of age; (4) self‐report having an intellectual disability; and (5) able to provide informed consent.

The consent protocol required that a research assistant read through the consent form alongside a potential participant. This was followed by the research assistant using a verbal query consisting of five questions to determine the participant's capacity to consent, as per recommendations from Dee‐Price (2020). Once a participant answered all five questions correctly, written consent was obtained. If a potential participant responded to any of the five questions incorrectly, they were informed they were not eligible to participate and were thanked for their time. A total of 77 participants expressed interest in completing the study. However, two were excluded as they did not meet the inclusion criteria of the minimum age of 18 years. As such, the final sample consisted of 75 women with ID, all of whom were recruited from various Special Olympics regional chapters across eastern Canada.

Once informed consent was obtained, each participant completed the measures alongside a research team member. The participants were given an “easy‐to‐read” version of the survey while the research team members read aloud from a separate survey, recording participants' responses verbatim. The easy‐to‐read version had large fonts and utilised visuals to aid in participant comprehension. Approval for this study was granted by the Human Ethics Board at the University of Calgary (REB#24‐0047).

2.2. Study Measures

2.2.1. Demographics

Questions regarding a participant's menstrual health management, diagnosis and menstruation status were collected through self‐report. All participants reported their age, living situation and support level (i.e., All Day, A Few Hours A Day, A Few Hours A Week, None). Those who still had a menstrual period (n = 50) were also asked to respond to questions related to use of birth control and preferred menstrual hygiene product.

2.2.2. Knowledge and Understanding of Menstruation and Menopause (Menstrual Health Knowledge)

Knowledge and understanding were assessed using a subset of seven questions from the Socio‐Sexual Knowledge and Attitudes Tool‐Revised (SSKAAT‐R; Griffiths and Lunsky 2003). The SSKAAT‐R is used to evaluate information for individuals with ID related to socio‐sexual topics and has been validated for use among individuals with ID (Griffiths and Lunsky 2003). Reliability of the measures is good, with test–retest between 0.78 and 0.95 and high inter‐rater agreement (0.89–0.96; Griffiths and Lunsky 2003). As with previous studies (e.g., St. John et al. 2025), seven items were selected from the “Women's Bodies” subsection, as they directly related to menstrual health knowledge.

Participants' responses were scored using a binary 0 (incorrect) and 1 (correct) system, with the exception of Item #3 which uses 2 (correct), 1 (partially correct), 0 (incorrect) as per the SSKAAT‐R scoring guidelines for these items. Examples of potential responses and accompanying scoring are provided in Table 1. A total score was determined by summing up each of the seven items, which can range from 0–8. While no cut points exist, it can be presumed that a higher score indicates a higher degree of personal menstrual health knowledge.

TABLE 1.

Seven items from the SSKAAT‐R and scoring criteria.

Items	Example responses	Scoring criteria
What is menstruation or having a period?	“Something all women get”	1 point if response includes any of the following: happens every month, blood (like) fluid comes out, cramps or pain
Which person here gets a period?	Choose from 5 images	1 point for pointing to the younger woman; 0 points for the older woman or other choices
Which of these things should you use when you have your period?	Choose from 4 images	2 points for pad and tampon; 1 point for either pad or tampon; 0 points for other answers
How often should you change your pad or tampon?	“Every other day”	1 point for any of the following: every few hours (more than 2 but less than 5 h), 4 to 6 times a day, when filled, when you go to the bathroom; 0 points for less than once or twice a day or more than 15 times a day
How often do women have periods?	“Every year”	1 point for saying approximately once a month
What does menopause mean?	“I don't know… but my grandma has it”	1 point for saying it is when a woman stops having periods
Who here has had menopause?	Choose from 4 images	1 point for identifying the older woman only; 0 points if any other picture identified alone or in combination with older woman

2.3. Data Analysis

All data were inputted and cleaned using Excel software and analysed using R Studio software. Three participants were removed from the final analysis for missing > 30% of data (n = 72). Descriptive statistics include frequencies and count for categorical variables and means and standard deviations for continuous variables. Assumption checks were conducted with relevant outcomes variables, and it was found that the SSKAAT‐R data were not normally distributed (w = 0.945, p = 0.004).

A Spearman's Rho correlation was conducted to determine the relationship between SSKAAT‐R total scores and age. Cut point recommendations and interpretation of results aligned with recommendations. Lastly, a Kruskal‐Wallis test was used to determine if SSKAAT‐R scores differed based on an individual's level of support (i.e., All Day, A Few Hours a Day, A Few Hours a Week, None) and living situation (i.e., Live Alone, Live with Family, Live with Partner/Friends, Live in Supported Housing). Individuals who responded “Unknown” to the level of support were removed from the analysis (n = 8).

3. Results

Demographics are outlined in Table 2. Participants' ages ranged from 18–65 years of age, with a mean age of 37.3 (SD = 11.1). Most individuals lived with their family (n = 34; 47%). A total of 22 participants (31%) received all day support and 10 participants (14%) received none. Of those participants who still had a period (n = 50), 74% (n = 37) exclusively used sanitary pads to manage their periods, with four participants (8%) using tampons. Just over half (52%; n = 26) used some method of birth control, with oral contraceptives being the most common (n = 17; 34%).

TABLE 2.

Demographics by n (%).

Age (x)	37.0 (11.2)
Living situation
Alone	15 (21%)
With Family	34 (47%)
Support Housing	23 (32%)
Support level
A few hours a week	13 (18%)
A few hours a day	18 (25%)
All day	22 (31%)
None/No Support	11 (15%)
Unknown/Prefer not to say	8 (11%)

Results from the SSKAAT‐R are shown in Table 3. Total scores on the SSKAAT‐R ranged from 0–8, with a median total score of 5, and an average total score of 4.4 (SD = 1.86). The items that had the fewest correct responses were Item #5, “How often do women have periods”, with 33 participants (46%) responding incorrectly; Item #4, “How often should you change your pad or tampon?”, with 47 participants (65%) responding incorrectly; and Item #7, “What does menopause mean?”, with 60 participants or 84% of the sample responding incorrectly.

TABLE 3.

SSKAAT‐R knowledge scores (n = 72) by n (%).

What is menstruation or having a period?
Correct	49 (68%)
Incorrect	23 (32%)
Which person here gets a period?
Correct	47 (65%)
Incorrect	25 (35%)
Which of these things should you use when you have your period?
Correct	22 (33%)
Partially Correct	49 (66%)
Incorrect	1 (1%)
How often should you change your pad or tampon?
Correct	25 (35%)
Incorrect	47 (65%)
How often do women have periods?
Correct	39 (54%)
Incorrect	33 (46%)
What does menopause mean?
Correct	12 (16%)
Incorrect	60 (84%)
Who here has had menopause?
Correct	52 (72%)
Incorrect	20 (28%)

Related to Item #5, most participants stated they did not know. Many overestimated (“Every two weeks”) or underestimated (“Every six months”) how often someone should get their period. This trend was seen with Item #4 as well, with most participants underestimating how frequently one should change a sanitary product. A total of 25 participants stated that tampons or pads should only be changed once or twice in a 24‐h period. Further, five participants incorrectly suggested that sanitary products should be changed once completely soiled/when they begin to smell. Incorrect responses for Item #7 consisted of participants stating they had never heard the term and/or were unsure what it meant.

No relationship was observed between total SSKAAT‐R scores and age (Rs = −0.081, p = 0.501). When comparing the four support groups (Figure 1), the highest SSKAAT‐R score was in those who reported “No Support”, with an average score of 5.0 (SD = 1.79). The lowest average score of 3.68 (SD = 1.55) was reported by those who received “All Day Support”. Both those who received support for a “Few Times a Week” and a “Few Hours a Day” had equal average scores of 4.0. Despite this, no significant difference related to support level (X2 = 4.39, df = 3, p = 0.222) was found. However, the effect size was medium (e2 = 0.070). Finally, no significant difference in SSKAAT‐R scores related to living situation (X2 = 4.75, df = 3, p = 0.093) was identified, though the effect size was medium (e2 = 0.066). Descriptively, those who reported living alone had an average score of 4.80, which was higher, though not significantly, compared to those who lived with family (x = 3.62, SD = 1.61) and those who lived in Supported House/Group Home (x = 4.04, SD = 1.69).

FIGURE 1.

SSKAAT‐R total scores between four support levels.

4. Discussion

The current study sought to further explore and describe knowledge related to menstrual health in those with ID. A secondary objective of the study was to explore how person‐specific factors (age, living situation, and support) may impact knowledge of menstrual health. Importantly, this research found that while some aspects of menstrual health were well understood by individuals with ID, others were poorly understood. Additionally, the study suggested that age, support level, and living situation had little impact on menstrual health knowledge. Findings from the current study, combined with those from St. John et al. (2025), highlight the significant knowledge gaps related to menstrual health in this population and, in doing so, suggest that health literacy related to menstrual health may be poor.

A large portion of the sample did not have a clear understanding of proper hygiene habits related to menstruation. Hygiene habits are a crucial aspect of menstrual health. Unfortunately, participants within the current study had limited knowledge related to the frequency of changing sanitary products. The findings show that in most cases, participants tended to underestimate how often they should be changing a sanitary product. The majority of participants felt that changing a menstrual product once or twice daily was effective hygiene management. Beyond the physical ramifications such as increased incidences of vaginal rash, odour, and bacterial vaginosis (Finlayson et al. 2024; Kırbaş et al. 2022; Sharma and Gupta 2020), the frequency of changing menstrual products has been found to be an important indicator of health literacy (Sun et al. 2024). It is important to consider what may be prompting those with ID to feel that they should be changing their menstrual products less frequently. While ineffective information and messaging could be the cause of low knowledge, the type of ID (Henderson et al. 2009), poor toileting habits in general (Tracy et al. 2016), or functional impairments (Henderson et al. 2009) may contribute to the issue.

With that said, it is important that caution is applied when interpreting these findings. Though participants are asked to respond to these questions generally (i.e., what should women do vs. what do you do?), it is possible participant may have applied their own personal hygiene practices to this question. These personal practices can be impacted by a variety of individual factors including menstrual flow, product type, or absorbency. Unfortunately, these factors were not captured in the chosen measure. Future research is needed to capture these potential contributors. Using open‐ended or qualitative methodologies, moving away from an objective measure with binary scoring, may provide more fulsome understanding of hygiene practices within this population.

The findings showed no relationship between age and total SSKAAT‐R scores. While research with the general population highlights a decline in general health literacy with age, often due to cognitive decline (Curtis et al. 2021), this study found that menstrual knowledge remained uniformly low across all age groups. Given that age often shapes both knowledge and health literacy through generational differences in values, lived experiences, and access to information (Vetter et al. 2022), these findings were unexpected. One explanation may be that broader structural determinants, such as access to tailored education and healthcare, play a more influential role in shaping menstrual knowledge within this population. According to Braveman et al. (2019), when systemic barriers like unequal access to education and healthcare go unaddressed, individual factors such as age have less influence, as these broader forces perpetuate health disparities (Braveman et al. 2019). Lack of accessible and developmentally appropriate education has been highlighted as a significant concern for individuals with ID, particularly in relation to sexual health literacy, an area of health often considered in parallel with menstrual health (McGrath et al. 2025).

The findings from this study speak to the ongoing health inequity experienced among women with ID, who may have limited access to education related to menstruation (Lee et al. 2024). Often, those with ID are not provided with adequate health and sexual education due to assumptions about their capacity to understand such information (Randall et al. 2024). Furthermore, educators and caregivers often lack the training and resources necessary to provide accessible and appropriate education tailored to this population (Randall et al. 2024). The persistent exclusion of individuals with IDs from tailored education fosters ongoing misinformation, stigma, and diminished self‐esteem related to menstruation. As a result, many experience confusion and shame about their menstrual experiences, leading to uncertainty about what constitutes a typical menstrual experience and a reluctance to seek support (Randall et al. 2024). When individuals with ID are consistently denied access to menstrual education throughout their lives, disparities in health literacy are likely to remain embedded regardless of age.

Our findings suggested that participants without support scored the highest on the SSKAAT‐R, while those receiving full‐time support scored the lowest, challenging previous assumptions related to health literacy and social support, more broadly. Interpersonal relationships play a crucial role in shaping health literacy, particularly for individuals with ID, because their dependence on caregivers, family, and friends directly affects their access to and understanding of health information (Vetter et al. 2022). Therefore, greater support would generally be expected to enhance health literacy by providing guidance and reinforcing knowledge (Vetter et al. 2022). Patterns from the current study likely reflect the relationship between the severity of ID and support needs. Individuals with mild ID often maintain independent lifestyles and greater autonomy over their health literacy. This allows them to manage their periods, and in cases of concern, seek out and apply menstrual health knowledge directly (Patel et al. 2021). Conversely, those with moderate to severe ID require ongoing or full‐time support due to significant limitations in intellectual and adaptive functioning, which restrict their opportunities for independent learning and decision‐making (Patel et al. 2021). Consequently, individuals with more severe disabilities rely heavily on caregivers for health‐related decisions, which can hinder the development of their personal health literacy. Furthermore, the attitudes and knowledge of support workers can exacerbate these disparities. Caregivers may underestimate the ability of individuals with ID to understand menstruation and manage related issues, a challenge compounded by the limited availability of tailored educational resources and insufficient training (Wiseman and Ferrie 2020). As a result, caregivers often prioritise reducing anxiety over menstruation rather than promoting autonomy, which inadvertently reinforces existing knowledge gaps within the population (Willis et al. 2010).

A similar pattern was seen when examining the relationship between living situation and menstrual health literacy as above. Participants living alone scored higher on the SSKAAT‐R compared to those living with family or in supported housing. According to Vetter et al. (2022), living arrangements are a key personal factor influencing menstrual literacy, as they shape access to health‐related information, resources, and social motivation through community and a sense of belonging. Based on this, one might expect individuals living with family or in supported housing to demonstrate higher menstrual literacy, given their increased exposure to social environments that could facilitate health knowledge and menstrual care practices. However, the findings suggest the opposite. Participants living alone may demonstrate greater menstrual knowledge due to higher levels of autonomy and possibly less severe disability status.

Health literacy and autonomy are interrelated as health literacy promotes informed decision‐making thereby enhancing autonomy, while autonomy can foster health literacy by motivating individuals to seek and apply that health information (Sørensen et al. 2012; Veenker and Paans 2016). In contrast, those living with others may be more reliant on caregivers, resulting in passive engagement with menstrual health information and self‐management. Health professionals often communicate through caregivers rather than directly with individuals with disabilities; therefore, limiting access to health information and reducing opportunities for decision‐making (Wiseman and Ferrie 2020). This may imply that while supported living environments and family settings offer social connection, they do not necessarily foster health literacy unless it is intentionally embedded into the environments.

5. Limitations

Notably, there are limitations to this study. Our measures primarily included subjective assessments, which may have affected the reliability of responses, particularly given the sensitivity of menstrual health topics. Additionally, as the SSKAAT‐R is a quantitative assessment, certain details and personal factors, which may impact menstrual literacy, could not be effectively captured. Finally, as a convenience sample was used, the findings are not representative of all individuals who menstruate and have an ID. Instead, the results from this study are representative of Special Olympics athletes, a cohort of individuals with ID who differ from the wider population of those with ID in relation to social support and independence. The results must be considered with this contextual information in mind, as it may have impacted certain findings (i.e., living situation and menstrual health knowledge). However, given the nature of the topic and the overall lack of literature in this area, this study does provide an important fundamental understanding of this topic.

6. Conclusion

The current study represents one of the first studies of its kind to explore health literacy related to menstrual health in individuals with ID. Despite the significant effect that menstrual health can have on this population, there are few studies which have explored this topic within those with ID. Not only does this work address a significant gap within the scientific literature, but it was able to identify that in some areas, health literacy related to menstrual health is poor within this population. This suggests that systemic barriers, such as limited access to appropriate education and resources, likely play a significant role in shaping menstrual health knowledge. The need for future research focused on developing and implementing inclusive and accessible menstrual health education programmes is needed if menstrual health is to become universally accepted as a health vital sign. Such initiatives should target not only individuals with ID, but also their caregivers and broader support systems, to ensure consistent delivery of information and to promote improved health outcomes.

Author Contributions

Laura St. John was responsible for conceptualization of the project, data collection, and data analysis, preparation of the first and final version of the manuscript; Anmol Panech supported data collection and data analysis, as well as drafting the first version of the manuscript; Tara‐Leigh McHugh supported project conceptualization, funding acquisition, data analysis, reviewing and editing the first draft of the manuscript; Avra Selick supported project conceptualization, funding acquisition, reviewing and editing the first draft of the manuscript; Yona Lunsky supported project conceptualization, funding acquisition, and reviewing the first draft of the manuscript; Patricia Katherine Doyle‐Baker supported conceptualization of the project, funding acquisition, supervision including mentorship to Laura St. John, reviewing and editing the first draft of the manuscript. All authors provided critical feedback and contributed to the final manuscript.

Funding

This study is supported in part by funding from the Social Sciences and Humanities Research Council of Canada. It was also supported in part by the Azrieli Accelerator at the University of Calgary, which was established through a generous gift from the Azrieli Foundation.

Conflicts of Interest

The authors declare no conflicts of interest.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.