Experiences of caregivers of adolescent children with intellectual disabilities in menstrual hygiene management: obstacles and needs

Abstract

The menstrual period of adolescents with intellectual disabilities is a complex phenomenon as they are a vulnerable group. During this period, both the adolescent and the caregiver are exposed to a lot of discrimination and face emotional, psychological, and socio-economic problems. The study is conducted to determine the experiences of caregivers of adolescent children with intellectual disabilities in menstrual hygiene management. The study is a qualitative research conducted between October 2022 and January 2023. The study sample consisted of 17 caregivers (mothers) of adolescent children with intellectual disabilities living in different provinces of Turkey who were selected through snowball sampling. Data were collected using the “Participant Information Form” and “Semi-structured Interview Form”. Collaizzi’s phenomenological analysis was used to analyze the data. This study was conducted in accordance with the COREQ Statement Checklist. As a result of the research, five themes were identified: (1) Expected day, (2) Inevitable end, (3) Problems experienced, (4) Communication with caregiver, (5) Search for solutions. It is recommended that health professionals (nurses, child development specialists, etc.) provide training and counseling to caregivers on the best approaches to implement good menstrual hygiene for adolescents with intellectual disabilities.

Introduction

Over 1 billion people worldwide have significant disability. An estimated 1.3 billion people experience significant disability. This represents 16% of the world’s population, or 1 in 6 of us (WHO 2024). It is reported that intellectual disability, which is included in neurodevelopmental disorders, affects about 1.6% of the world population, although it varies according to the level of development, population characteristics, and definitions of countries (Girimaji and Pradeep 2018). In our country, the rate of mental retardation is 20.03% (Republic of Turkey Ministry of Family and Social Services 2020). People with intellectual disabilities represent a significant proportion of the population in the world and our country and are an important group that should not be ignored in terms of health services (Republic of Turkey Ministry of Family and Social Services 2020; WHO 2024).

Menstruation, especially menarche, is a life-changing event for girls as they enter adolescence and adulthood. Effective menstrual hygiene management is essential for the health, dignity, empowerment, mobility, and productivity of women and girls (Enoch et al. 2020; Power et al. 2020). Therefore, nurses and other health care professionals must learn the practices and needs of caregivers who learn mostly by doing and from each other, and be prepared to teach only those who do (Dündar and Özsoy 2020; Gray et al. 2021). Proper management of menstrual hygiene depends on women having adequate and appropriate information, appropriate hygienic materials, and an enabling environment. However, studies have shown that many women do not have adequate knowledge about menstrual hygiene and do not perform genital and general hygiene practices properly (Arumugam et al. 2014; Chandra-Mouli and Patel 2020; Gray et al. 2021). In this context, proper management of the menstrual process is particularly important for adolescent groups who are at the beginning of this process. Attention should be paid to the menstrual hygiene needs of adolescent girls for their physical, mental, and reproductive health in their future lives. An adolescent girl with a disability has the same menstrual hygiene needs as other adolescent girls but needs more information as she may face additional challenges. Physical, communication, sensory, and caregiver difficulties are notable challenges to menstrual hygiene practice among adolescents with disabilities. Socio-economic, cultural, and physical factors compound the challenges of menstrual hygiene management (Enoch et al. 2020; Power et al. 2020). There are many problems that adolescents with disabilities may experience, such as having to change their pads in dirty places, not having the means to buy sanitary pads and wash their used materials themselves, and having difficulty knowing when their periods begin (Klein, Gawrys, and Sylvester 2015; Wilbur et al. 2021). The literature reports that adolescents with disabilities may experience problems such as menstrual irregularities, menstrual pain (especially for adolescents with disabilities who have difficulty communicating discomfort or pain), and menstrual epilepsy (seizure clustering pattern associated with the menstrual cycle), and that these problems may affect hygiene behaviors (Enoch et al. 2020; Klein, Gawrys, and Sylvester 2015; Wilbur et al. 2021).

Adolescents with intellectual disabilities tend to have difficulty tracking their menstrual periods and practicing complete period management due to their lack of self-care skills. Therefore, they need a caregiver, such as a father or mother, in this process. Caregivers may need to teach menstrual self-management skills to adolescents with intellectual disabilities or meet their needs. It has been reported that caregivers experience anxiety because adolescents with intellectual disabilities cannot understand menstruation, cannot maintain menstrual hygiene, remove and discard sanitary pads in inappropriate places, do not want to wear sanitary pads, reveal their privacy to those around them, and are stressed that they may be exposed to sexual abuse (Nurkhairulnisa et al. 2018). Therefore, the menstrual process can be a frightening and distressing experience, and inadequate information and materials needed for menstrual hygiene management, barriers, and inappropriate hygiene practices can lead to health problems for the women and adolescent girls they serve (Amatya et al. 2018; Wilbur et al. 2021). In this context, health professionals have an important role to play in preventing women and the adolescent populations they serve from experiencing health problems related to menstrual processes and hygiene and in eliminating or minimizing the problems they experience.

Health protection and promotion are important roles of health professionals. Therefore, one of the responsibilities of health professionals is to help a woman gain the knowledge and autonomy she needs to manage her menstrual hygiene properly. In particular, women with adolescent children with disabilities are likely to need more support from health professionals in this regard. There are few studies in the literature on how adolescents with disabilities manage menstrual hygiene and their needs. Understanding the current situation and needs of caregivers of adolescents with intellectual disabilities in this process is important in terms of caregiving and educational roles of nurses and innovative approaches (Dündar and Özsoy 2020; Gray et al. 2021). Therefore, this study was designed to determine the experiences of caregivers of adolescents with intellectual disability in menstrual hygiene management.

Method

Design

This qualitative study was conducted to determine the menstrual hygiene management experiences of caregivers of adolescent children with intellectual disabilities using Collaizzi’s phenomenological design. The phenomenological design focuses on the feelings and experiences of individuals who experience a particular phenomenon in depth (Colaizzi 1978). This study met the items listed in the Consolidated Criteria for Reporting Qualitative Research Checklist (Tong, Sainsbury, and Craig 2007).

Procedure

The study population consisted of caregivers (mothers) of adolescent children with intellectual disabilities living in various provinces of Turkey.

Inclusion criteria:

• Having a female adolescent child with intellectual disability,

• The adolescent has menstruated

• Agreeing to participate in the research

Exclusion criteria:

• The child has another disability, such as hearing or vision accompanying intellectual disability

• Caregiver has a diagnosis of psychotic disorder

• Refusing to participate in the research

The study population was selected through the use of purposive and snowball sampling techniques. Snowball sampling is a method employed in cases where information about a population is incomplete, and it is challenging to reach the individuals who comprise the population (Erdoğan 2018). Semi-structured interviews were conducted with 17 caregivers in person or via the Zoom platform between October 2022 and January 2023. Prior to the commencement of the interview, the caregivers were duly informed about the nature of the research, and their consent was obtained. The researcher also took field notes for triangulation purposes. The individual interviews lasted approximately 20 min. Data were collected simultaneously, and the data collection phase was completed when sufficient saturation was reached, defined as the point at which no new issues emerged from the participants’ experiences.

Measurements

The data were collected using the “Participant Information Form” and the “Semi-structured Interview Form,” which were developed by the researchers through a review of the relevant literature (Nurkhairulnisa et al. 2018; Power et al. 2020; Wilbur et al. 2021). The Participant Information Form comprised ten questions designed to ascertain the characteristics of the caregivers (e.g. age, educational status, age of the disabled child, degree of disability, and time of learning about the disability) and the care recipient (e.g. age, menstrual age, menstrual pattern).

The semi-structured interview form consists of five open-ended questions about caregivers’ experiences related to their child’s menstruation process. The questions in the interview form were prepared in accordance with the “triangular structure.” The interview questions are as follows (Table 1).

Table 1.

Semi-structured interview questions.

Opening question	What did you think about how your daughter’s menstrual period would be?
Transition questions	How did you feel when your daughter menstruated for the first time? What are the problems you experience during your daughter’s menstrual periods? How is your daughter’s attitude and behavior towards you during menstruation?
Ending question	What are your ways of dealing with problems?

Ethical consideration

Before starting the study, approval was obtained from Çankırı Karatekin University Ethics Committee (28.09.2022/2). Research data were collected by obtaining informed consent from the participants in accordance with the principles of the Declaration of Helsinki, and each participant was randomly assigned a code (such as P1, P2) to ensure confidentiality. The recorded interviews and transcriptions were saved on a computer protected by the principal investigator’s password.

Trustworthiness

In the study, the four criteria (credibility, reliability, transferability, and confirmability) recommended by Lincoln and Guba (1985) to be used in qualitative research were followed to ensure reliability (Lincoln and Guba 1985). An interview form was used to ensure consistency in data collection, and interviews were recorded to ensure reliability. The recordings were transcribed verbatim within 24 h, and the transcripts were verified by the participants. Participant statements were quoted to ensure transferability and reliability. Verifiability is related to the objectivity of the research and can be demonstrated by the detailed explanation of the research method and data analysis process.

Analyses

The researchers conducted the interviews, and a transcription of the interviews was created after the interviews. The data obtained were reviewed and coded by two independent researchers (SY and NK). The data were analyzed using Colazzi’s phenomenological steps (14). These steps were applied as follows:

• In-depth reading (each participant statement was read).

• Important sentences were formulated, and codes were created.

• The coded texts were discussed, and themes were identified.

• The themes obtained were categorized.

• The final report was prepared by quoting participant statements.

Results

Seventeen caregivers (mothers) with a mean age of 44.7 years (SD: 8.12) participated in the study. Table 2 shows the basic sociodemographic data of the participants.

Table 2.

Participants’ (mother) sociodemographic data (n = 17).

Participant	Caregiver age	Education status	Age of the disabled child	Degree of disability	Time of learning about the disability	Getting information about the menstruation process of the disabled child	Age of menstruation of a disabled child	Menstrual cycle pattern	Duration of the menstrual cycle	The child’s ability to manage the process
P1	55	Primary education	17	Moderate	At birth	No	10	Regular	4 Day	With help
P2	49	Primary education	16	Moderate	At birth	No	14	Regular	10 Day	Without help
P3	42	Primary education	16	Severe	At birth	No	14	Regular	3–4 Day	With help
P4	56	Primary education	17	Moderate	Postpartum	Yes (Teacher)	14	Regular	5 Day	With help
P5	48	Primary education	17	Moderate	Postpartum	No	13	Regular	6–10 Day	With help
P6	42	High school	13	Severe	Postpartum	Yes (Doctor)	12	Regular	5 Day	No
P7	42	Associate Degree	15	Moderate	At birth	Yes (Relative)	13	Regular	5 Day	With help
P8	38	Primary education	15	Moderate	At birth	No	14	Irregular	5 Day	With help
P9	52	Primary education	16	Moderate	At birth	No	15	Regular	3–4 Day	Without help
P10	55	Postgraduate	15	Severe	Postpartum	No	13	Irregular	5 Day	No
P11	48	Primary education	15	Moderate	At birth	Yes (Internet)	11	Regular	6–10 Day	No
P12	40	High school	15	Mildly	At birth	Yes (Internet)	12	Regular	5 Day	Without help
P13	36	High school	13	Mildly	Prenatal	No	10	Regular	5 Day	With help
P14	43	Primary education	11	Moderate	At birth	Yes (Nurse)	10	Regular	3–4 Day	Without help
P15	42	High school	13	Mildly	At birth	No	11	Regular	5 Day	Without help
P16	45	Licence	15	Moderate	At birth	Yes (Internet)	10	Regular	6–10 Day	With help
P17	45	Primary education	13	Mildly	Prenatal	No	11	Regular	5 Day	Without help

After data analysis, five themes and 25 sub-themes emerged regarding the experiences of caregivers (mothers) of adolescent children with intellectual disabilities in menstrual hygiene management (Table 3).

Table 3.

Main themes, sub-themes, and codes.

Main themes	Sub-themes	Codes
Expected day	Escape	Not wanting to think, thinking it is too early
	Inescapable truth	Accepting as normal, being aware, expected state
	Don’t console yourself	The thought that I will get used to it, the thought that I am not alone
	Hard times	Fear, anxiety, responsibility, the problem of acceptance, the worry of not being able to cope, a huge emptiness
	Seeking help	Asking someone, doing research
	Emotionalization	Crying, sadness
Inevitable end	Negative emotions	Feeling sad, experiencing anxiety, fear, hopelessness, rebellion, loneliness, inability to cope, increased responsibility, effort, helplessness, not knowing how to explain, believing that you will not be accepted, feeling bad, crying, straining, panic
	Neutral emotions	Emptiness, feeling nothing, nothingness
	Emotion transitions	First surprise and then acceptance, first sadness and then joy, first fear and then relief
	Positive emotions	Being comfortable, being prepared, accepting it as normal, rejoicing with the thought of becoming a young girl
	Seeking support	Asking for help from the nurse, asking the teacher, taking to the doctor, asking the environment
	Surprise	Confusion, thinking it is too early
Problems experienced	Physiological problems	Itching, abdominal pain, lower back pain, headache, sleep problems, body discomfort, heavy and long menstrual periods
	Emotional problems	Irritability, crying, irritability, restlessness, tension, wanting more attention, fear, anger, constantly wanting mom
	Hygiene problems	Difficulty of using pads, blood on clothing, unwillingness to change underwear
	Everything is fine	Learning by imitation, worrying for nothing, easy acceptance, rejoicing, no problems
	Social problems	Not wanting to go to school, telling everyone that you have your period
	Despair	Not understanding the situation, not knowing what to do, feeling of futility
Communication with caregivers	Fondness to mother	Not separating from mother, demanding constant attention, hugging mother, wanting to sleep with mother
	Loneliness	Withdrawal, not wanting to talk, not wanting to do anything, sleeping all the time
	Using the mother	Being nice because he needs to be, making his mother do everything
	Dark days	Irritability and nervousness, tantrums, aggression, irritability, impaired communication, crying spells
Ways of dealing with problems	Emotional support	Hugging, paying more attention, taking out and walking, trying to stay calm, calming down, doing things she likes, chatting, not sending her to school
	Physiological assistance	Hot water bottle, hot towel, socks on feet, painkillers, supplements, herbal tea, hot drink, rest
	Hygiene assistance	Use of panty liners, frequent pad changes, wearing layers of underwear, wearing dark clothes

Main theme 1: Expected day

Caregivers’ thoughts on how the child’s menstruation period would be were grouped under six sub-themes.

Escape

[…] Actually, I did not think about it much, or rather I did not want to think about it. I thought that we would find a solution once the menstrual period come […]. (P13)

Main theme 1 (continued): Expected day

Unavoidable reality

[…] Since I knew what would happen because of my other daughter, I thought that when the time comes, this daughter will also […]. (P7)

Consoling oneself

[…] I thought it would be like my other daughter’s period. I thought she would get used to it[…]. (P6)

Difficult days

[…] I thought about how to deal with this situation, how to explain it, I was scared. […]. (K9)

Seeking help

[…] Yes, I thought about it. When I went to the doctor, I was trying to get information from the nurses, how should I proceed when I have my period[…]. (P17)

Emotionalization

[…] The more I thought about it, the sadder I got. She kept talking about getting married and being a bride. I understood, but I was sad. My daughter was growing up, but not like other children. […]. (K1)

Main theme 2: Inevitable end (an end that cannot be realized or not realized)

Six sub-themes emerged regarding the feelings of caregivers when mentally disabled children menstruate.

Negative emotions

[…] I had a very difficult time when my daughter had her period for the first time. I tried very hard to help her manage it on her own. I felt tired and sad all the time […]. (P14)

Neutral emotions

[…] I felt neither happy nor sad, I just thought about how to make her comfortable […]. (P7)

Emotion transitions

[…] I was surprised at first, and then I accepted that my daughter is growing up now and this is normal […]. (P12)

Positive emotions

[…] I was very happy that she took her first step into girlhood. I said I now have a friend to share my problems with[…]. (P8)

Seeking support

[…] I realized that a difficult period had started. I asked the teacher what I should do […]. (P16)

Surprise

[…] I did not expect it so early. I was very surprised when she had her first period right after she had surgery […]. (P3)

Main theme 3: Problems experienced

Six sub-themes emerged regarding the problems experienced during the child’s menstruation process.

Main theme 3 (continued): Problems experienced

Physiological problems

[…] She usually has abdominal pain and low back pain […]. (P11)

[…]The bleeding is very intense and lasts for a very long time […]. (P8)

Emotional problems

[…] Mostly, she pushes us emotionally. She becomes more irritable or suddenly starts crying. (P9)

Hygiene problems

[…] I tell her to use pads, but she does not want to use them. She refuses to wear underwear […]. (P2)

Everything is fine

[…] I did not have any serious problems. I explained what she should do. At first, she did not want to use pads; I helped her put them on and take them off, and she learned. She got used to it in a short time […]. (P9)

Social problems

[…] There are problems on the way to school, so I do not send her to school on those days […]. (P14)

Helplessness

[…] I tell her what to do, she does not understand. […]. (K6)

Main theme 4: Communication with caregivers

Four sub-themes emerged regarding the approach and behaviors of the child with intellectual disability towards the caregiver during menstruation.

Fondness to mother

[…] When my daughter gets her period, she hugs me more, she wants to sleep with me, she expects more attention […]. (P14)

Loneliness

[…] My daughter is withdrawn at other times too, but when she has her period, she becomes more withdrawn […]. (P16)

Using the mother

[…] She wants me to do everything. She acts even better than usual because she needs help […]. (P4)

Dark days

[…] She gets irritable. Our relationship is deteriorating. She does not want to do what she always does; she gets angry about everything […]. (P1)

Main theme 5: Ways of dealing with problems

The statements regarding the methods of coping with the problems experienced by the caregivers during the menstruation process of the child with intellectual disabilities were grouped under three subthemes.

Emotional support

[…] My daughter is normally very emotional. She is even more emotional during this period. I hug her more […]. (P15)

Physiological help

[…] She has a lot of abdominal pain, I give her medicine, I try to keep her feet warm[…]. (P7)

Hygiene assistance

[…] She does not use pads, I make her wear layers of underwear, I change them often. I make her wear dark clothes on top. […]. (K10)

Discussion

Menstruation is a common experience, and menarche, the first menstruation, can cause many reactions in adolescent girls with intellectual disabilities and their caregivers. Despite the high level of anxiety among parents or caregivers of girls with intellectual disabilities, research shows that, for the most part, these adolescents experience menstruation as a burden due to daily care. However, parents are psychosocially concerned about how these adolescents can cope with the onset of menarche, current menstruation, and increased risk of sexual abuse (Armah-Ansah et al. 2023; Nurkhairulnisa et al. 2018). Therefore, this study aims to explore and add to the limited literature by bringing to light the challenges and coping strategies adopted for effective menstrual hygiene management among adolescents with intellectual disabilities and their caregivers.

In this study, caregivers (mothers) stated that they often had thoughts of fear of not being able to cope, a huge emptiness, and anxiety about how the menstruation period of the adolescent girl would be. In a study, it was found that caregivers both at home and in an institution had difficulties with menstruation (Armah-Ansah et al. 2023). In another study, contrary to our findings, it was found that parents had difficulty in coping with intellectual disability and did not perceive the menstruation period as a bigger problem than coping with the underlying disease (Flores-Medina, Valdez-Martinez, and Márquez-González 2022). Since all of the caregivers were women, the fact that they had caregiving roles in addition to both motherhood and daily activities (cooking, cleaning, etc.) and that the majority of them did not receive any education about the care of their daughters’ underlying disease may have affected the adolescent’s negative feelings about how the menstrual period would be.

In our study, caregivers (mothers) stated that when their daughters with intellectual disabilities had menstruation for the first time, they experienced sadness, loneliness, and helplessness, cried, believed that their daughters would not cope with the menstruation process and panicked. Again, in our study, it was determined that caregivers first experienced surprise and then acceptance, first sadness and then happiness, first fear and then relief. Similar to our findings, in studies conducted with parents of individuals with intellectual disabilities, it was found that parents experienced both happiness and sadness (Bülbül and Karataş 2023), found their children’s adolescent period unexpected, felt helpless, inadequate and called the period a crisis (Menon and Sivakami 2019), felt anxious, disappointed, started crying, were not prepared for the menarche process and thought that this process was a bit challenging at the beginning (Thakur and Mishra 2023). ‘Menstruation’ and ‘intellectual disability’ are stigmatized and not accepted as normal due to the taboos they bring with them. In fact, intellectual disability is attributed as a symbol of social shame (Thakur and Mishra 2023; Wilbur et al. 2021). Parents believe that society may sanction both them and their children if their children with intellectual disability go beyond the limits set by society in special situations such as sexuality and menarche (Kamaludin et al. 2022). The fact that this study was conducted in Turkish culture and that there are similar taboos in Turkish society may have influenced the emergence of similar results in the literature.

In this study, caregivers (mothers) stated that during menstruation periods, adolescent girls experience physiological problems such as abdominal pain, low back pain, itching, sleep problems, and body discomfort; emotional problems such as crying, irritability, restlessness, desire for more attention, fear, anger, and constantly wanting their mother; hygienic problems such as difficulty in using pads, blood transfer to clothes, and not wanting to change underwear; and social problems such as not wanting to go to school and telling everyone that they have their period. This aligned with findings from other studies. In the literature, adolescents with intellectual disabilities have been reported to refuse to wear pads (Akter 2021; Chigunwe 2021), and destroy menstrual pads given to them (Chigunwe 2021), restlessness (Akter 2021), crying (Akter 2021; Flores-Medina, Valdez-Martinez, and Márquez-González 2022), vomiting, pain, feeling very uncomfortable, not wanting to sit on a chair at school and home (Akter 2021), It was found that they experienced problems such as not wanting to go to school (Karthikayini and Arun 2021), being irritable, removing their pads in public, not closing the bathroom door when using the bathroom, fear, sadness, disgust (Flores-Medina, Valdez-Martinez, and Márquez-González 2022), itching (Karthikayini and Arun 2021). Lack of pre-menarche education about menstruation in adolescents with mild and moderate intellectual disabilities was associated with emotional, physiological, and social problems in adolescents during the menstrual period. In addition to social (burden of caregiving, lack of public awareness and social support) and economic (interference of child care with various income-generating activities in the family, extra expenses related to the child’s illness) difficulties, parents’ lack of education on the care of their daughters’ underlying illness leads to behaviors reflecting lack of understanding that interfere with the effective health and well-being of their daughters with intellectual disabilities (Akter 2021; Márquez-González, Valdez-Martínez, and Bedolla 2021). In this study, the fact that the majority of the girls had moderate and severe intellectual disability and the majority of them managed the menstrual process with assistance may have negatively affected the menstrual period.

In our study, it was determined that adolescents showed behaviors such as not leaving their mothers during menstruation, demanding constant attention, not wanting to do anything, being aggressive, and withdrawing. In a study, caregivers reported that participants with mental disorders showed behaviors such as withdrawal, increased hyperactivity, self-harm, showing menstrual products to others, excessive sleep, fear, withdrawal, and refusal to eat during menstruation (Wilbur et al. 2021). The inability of people with intellectual disability to understand the cause of their discomfort or their inability to communicate due to lack of management of problems such as pain, itching, etc., may have affected the menstruation process more negatively. In addition, the fact that unmanaged symptoms negatively affect behaviors, which causes caregivers to feel overwhelmed, and the formation of a negative cycle process may be associated with communication deficiencies.

In this study, it was found that caregivers (mothers) cope with menstrual problems by providing emotional support such as hugging, paying more attention, taking them out and walking them, and doing things they like; physiological support such as putting a hot water bag or hot towel, giving supplements such as painkillers, giving herbal tea or hot drinks; and hygiene support such as using cloth diapers, changing pads frequently, wearing layered underwear and dark clothes. The way caregivers in this study respond aligned with the findings of other studies. In the literature, caregivers support adolescent girls by explaining menstruation using themselves, their older daughters, close friends, and relatives as examples, wearing pads and panties, frequent toilet training, bad touch and good touch training, self-protection techniques, and gender identification training to keep themselves safe, They were found to manage menstrual problems with approaches such as comforting by teaching prayers (Akter 2021), giving homeopathic medicine (Thakur and Mishra 2023), explaining menstruation with puppets (Flores-Medina, Valdez-Martinez, and Márquez-González 2022), stopping menstruation with hysterectomy (Karthikayini and Arun 2021), giving warm water, making them sleep, and tying a cloth tightly around their abdomen (Wilbur et al. 2021). Menstruation is a social and cultural event as well as a biological one. Menstruation and its management is a women’s issue. Socially, girls are expected to keep it private and hide it from boys. Culturally, there are many taboos, such as that girls’ periods are dirty and that the dirt will be passed on to others. Although menstruation is an indicator of fertility for women, menstruating girls have to feel secrecy, shame, embarrassment, fear, and stigmatization due to the environment (Danielsson 2017). If the girl has a disability, caregivers or mothers are also affected by these factors (culture, beliefs, values of the society), so they manage their daughters’ menstruation in their own way without sharing with others or even involving family members (Márquez-González, Valdez-Martinez, and Bedolla 2018).

Conclusion

This study highlights the barriers to menstrual hygiene management (MHM) faced by adolescents with intellectual disabilities and their caregivers based on their day-to-day experiences and its negative impact on their physical, emotional, mental, and social aspects. The issues related to MHM for adolescents with intellectual disabilities are much more complex than for other individuals in society due to the additional discrimination and limitations of disability; therefore, innovative approaches to menstrual hygiene management specific to these individuals should be introduced. While MHM is not explicitly included in the Sustainable Development Goals, it is essential to achieving the gender, health, and education goals. Disabled people are the largest minority group, so attention and resources for disability-inclusive MHM need to be prioritized to advance the Sustainable Development Goals to “leave no one behind.” In line with these findings, it is recommended that health professionals (nurses and child development workers) train and counsel caregivers on how best to implement good menstrual hygiene practices for adolescents with intellectual disabilities.

Strengths and limitations of the study

Strengths of this study include the use of qualitative methodology to explore a very specific topic with people who may never have discussed menstruation with another person. Limitations of the study include the fact that the research consisted only of female caregivers of adolescents with intellectual disabilities. Therefore, it is not possible to generalize the results of the study to the entire population. In addition, the inability to control for many variables, including women’s cultural and religious beliefs and communication differences, is also a limitation.

Ethical approval

The Cankırı Karatekin University Ethics Committee approved the study (Decision date: 28.09.2022-Number:2). All participants’ written informed consent were provided.

Authors contributions

Sakine Yılmaz: Conceptualization, methodology, formal analysis, visualization, writing- original draft preparation. Nazan Kaytez: Methodology, formal analysis, data curation, writing- reviewing and editing. All authors have approved this version for publication.

Disclosure statement

All authors declare that they have not received any financial support or have relationships that may pose a conflict of interest.

Data availability statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.