Source of participants
The quality assessment identified 13 (59%) studies as having low, seven (32%) as medium and two (9%) as high risk of bias. The main reasons for potential bias was the limitations in generalisability of results due to a small sample and response rate being lower than 70%.
Pre-menstrual symptoms and communication difficulties experienced by people with intellectual impairments.
Nine papers (41%) covered pre-menstrual symptoms (PMS) [ 33 – 41 ]. Eight reported PMS symptoms and related behaviour, including menstrual cramps, mood swings, fatigue, irritability, anger, social withdrawal, decreased concentration, increased hyperactivity, self-injury and inappropriate handling of menstrual blood or hygiene products experienced by people with intellectual impairments [ 34 – 41 ]. Six papers assessed the frequency and severity of pain [ 36 – 41 ], three of which compared these between disabled and non-disabled people [ 37 , 38 , 41 ].
Obaydi and Puri stated that PMS was experienced by 92% of the group of people with autism, compared to 11% in the control group of non-disabled people [ 38 ]. This study had the lowest risk of bias. Kyrkou also concluded that people with Down syndrome or autism experienced higher rates of pain than the general population [ 37 ]. Due to the challenges in communicating the extent and location of pain, Kyrkou deduced this through changes in behavior [ 37 ]. However, Ibralic et al. [ 41 ] and Ranganath and Ranganath [ 39 ] contradicted this finding. Ibralic et al. reported that PMS symptoms were almost equally distributed between non-disabled people and people with an intellectual impairment [ 41 ]. Ranganath and Ranganath reported that no one with Down syndrome experienced menstrual pain or premenstrual tension, but the authors did not include an assessment of the participant’s communication abilities or factor this into the results [ 39 ]. Ranganath and Ranganath’s study was marked as having a high risk of bias [ 39 ].
Three studies investigated the severity of PMS symptoms by disability type [ 34 , 37 , 40 ]. All studies concluded that there is divergence within groups. Kyrkou [ 37 ] and Hamilton et al. [ 40 ] recognised that the ability to report and locate pain was a determining factor. For instance, within the intellectual impairment group, Kyrkou found that 67% (n = 8) of the research participants with Down syndrome were able to say that they were in pain or point to where they had pain, even those with limited communication abilities [ 37 ]. Only one of the nine participants on the autistic spectrum was able to point to, or state when she was in pain, even though all participants had good communication skills.
Three studies stated that the inability of some people with an intellectual impairment to understand the source of pain and communicate affected their behaviour [ 34 , 35 , 37 ].
"She gets short tempered . But it’s not her fault . She can’t speak very well , so I think that’s how she expresses herself” (carer from India) [ 35 ].
Six (27%) studies investigated the key concerns of carers who support people with intellectual impairments [ 34 – 37 , 42 , 43 ].
Carers (mothers) of people with an intellectual impairment in Thapa and Sivakami’s study in India reported that difficulties with communicating to daughters, and vice versa, were a major challenge [ 35 ]. Challenges with communication lead mothers to rely on observing changes in their daughter’s behaviour to anticipate menstruation [ 34 ]. Predictors include irritability, restlessness, crying, self-harm, decreased appetite and disruptions in sleeping patterns [ 34 ].
Other challenges reported by carers included an aversion to wearing a menstrual product, a lack of adherence to social and cultural norms, such as inappropriate handling of menstrual blood and product, talking to others about their menstruation and changing the used menstrual product in front of others [ 35 – 37 , 43 ].
"She will leave the door open while changing her pad , and doesn’t understand that her elder brother is at home . So I tell her , ‘Always bolt this door from inside . ’ Sometimes she understands , but sometimes she starts changing in front of them" (carer from India) [ 35 ] " .
One of these six studies investigated professional carers’ levels of satisfaction of intimate care tasks, finding that menstrual care was the second most disliked aspect for residential staff (after giving enemas), and the most disliked aspect for day unit staff (who do not give enemas) [ 42 ].
Menstrual product acceptability for people with physical impairments.
Four studies (18%) investigated the menstrual product used and preference [ 34 , 35 , 44 , 45 ]. Two of these studies considered the product used [ 44 , 45 ]. One [ 44 ] explored the product acceptability from the perspective of people with spinal cord injuries, and the remaining two [ 34 , 35 ] investigated the carers’ product preference. 19% of the sample in the study focusing on people with spinal cord injuries (conducted in the USA), reported discomfort and difficulty in positioning the menstrual product to ensure its maximum absorbency, as well as increasing difficulties with catheters and urinary management during menstruation [ 44 ].
Three of the 22 studies explored the disabled person’s preference through the carer [ 34 , 35 , 43 ]. The studies reported that the people with an intellectual impairment often refused to wear the menstrual product, leading to stress felt by the carer and constant negotiation with the disabled person.
"My biggest problem was that she didn’t want to wear a pad . The understanding isn’t there (carer from England) [ 43 ]. ”
In a study, undertaken in India, mothers limited their daughter’s physical movements during menstruation so that she would not go outside with blood stained clothes [ 35 ]. Another coping mechanism applied by carers in Taiwan, was sewing the pad into the underwear or buying adult sized nappies for their daughters [ 34 ].
In two of the four studies, mothers were caring for daughters with incontinence [ 34 , 35 ]. These carers felt that menstruation added another layer of complication [ 35 ], and that the cost of nappies and pads were a major concern [ 34 ]
Five studies (23%) investigated MHM training given to people with intellectual impairments [ 35 , 37 , 43 , 46 , 47 ]. One study highlighted a lack of training and support provided to this group because carers did not believe that the individual would understand MHM information [ 35 ]. The authors hypothesised that some people with intellectual impairments refused to wear a menstrual product because they were not given any MHM information, including being shown a menstrual product, or practice wearing it prior to their first menstrual cycle. Consequently, they did not understand the purpose of a menstrual product, did not feel comfortable wearing it and associated it with menstrual cramps [ 35 ].
One of these fives studies explored the teaching on MHM provided to people with intellectual impairments in institutions [ 47 ]. It highlighted a lack of correlation between training provided and the person’s level of understanding [ 47 ]. Three studies showed positive correlations between providing MHM training to people with intellectual impairments and an increased ability to manage menstruation independently [ 35 , 37 , 46 ]. In Kyrkou’s study, conducted in Australia and New Zealand, people with Down syndrome who had been given MHM information prior to puberty were better able to cope with their menstrual cycle than those who were not [ 37 ]. Altundağ and Calbayram showed in their study in Turkey, that using a doll to practice changing and disposing of a used menstrual product, was an effective way to increase the MHM skills of people with intellectual impairments [ 46 ].
Five studies investigated the level of training and support provided to carers (professionals and mothers) on how to manage menstruation of a person with an intellectual impairment [ 34 , 35 , 42 , 48 , 49 ]. Three of these studies [ 42 , 48 , 49 ] focused on professional carers working in institutions and two studies on mothers at home [ 34 , 35 ]. The three studies conducted in institutions highlighted limited MHM training and standards for intimate and personal care tasks; that the task’s importance was under-recognised by management; understanding of the menstruation of people with intellectual impairments was low, and support provided on menstrual issues was lower than sex education, but higher than menopause [ 42 , 48 , 49 ].
The mothers in the two studies focusing on care provided within the family were given no guidance, information or support on how to manage their daughter’s menstruation, leaving them feeling overwhelmed and unsupported [ 34 ]. In the Indian and Taiwanese settings, mothers believe that menstruation is a private issue so did not discuss their daughter’s menstrual cycle with anyone else, including professionals [ 34 , 35 ].
Six papers included an analysis of menstrual suppression of people with intellectual impairments [ 34 – 36 , 50 – 52 ]. Menstrual suppression includes long-term contraception (i.e. oral contraceptive pill and the patch) and sterilisation (i.e. hysterectomy, tubal ligation). Two of these six studies were from the LMIC and the remaining four studies were from HICs [ 35 , 50 ]. Two studies [ 50 , 52 ] were published before 2000 and four after 2010 [ 34 – 36 , 51 ].
Of these six papers, five reported that people with intellectual impairments were sterilised or on long-term contraception. Reasons for sterilisation cited by carers including a perception that menstruation care is a “burden”, a fear of unwanted pregnancies [ 35 , 36 , 50 – 52 ], difficulties related to the menstrual care tasks; the perceived lack of benefit for the person with an intellectual impairment, as well as mothers’ desire not to “burden” an older daughter with the menstrual care tasks when she is no longer able to undertake these tasks [ 35 , 50 , 52 ].
"I used to do everything–changing the pads every three–four hours , taking her to the toilet . But she was not aware at all; there were no feelings in her . Then when she was 16 years old , I realised that I could not do it anymore , and it was not benefitting her in anyway . Then we got her operated upon . We got her surgery done , and got her uterus removed” (carer from India) [ 35 ].
Three studies included satisfaction levels of carers post sterilisation [ 35 , 50 , 52 ]. All of these reported high levels of carer satisfaction. One study from Taiwan challenged this trend of menstrual suppression [ 34 ]. In this study, regular menstruation was seen as an indication of good bodily health and daughters with an intellectual impairment were given medicine to help regulate their cycles. However, almost all mothers in this study were advised by relatives and medical professionals to sterilise their daughters in order to eliminate the ‘tedious’ menstrual care, for better hygiene and to prevent unwanted pregnancies [ 34 ].
Our search sought to identify studies exploring the MHM requirements of disabled persons, but only found 22 studies that met the inclusion criteria. The majority of studies focused on people with intellectual impairments and their carers.
Fig 2 summarises the key findings in this review that relate to people with intellectual impairments and their carers. It shows that societal beliefs and taboos around menstruation and disability means the issue is shrouded in silence, and that it lacks attention and resources. The silence surrounding disabled people’s menstrual hygiene requirements is demonstrated by the limited number of peer reviewed studies gathered for this review. Without rigorous evidence from different contexts, it is difficult to advocate for greater attention and resourcing to meet the MHM requirements of disabled people and their carers. The subsequent dearth of MHM training, information and support tailored to meet disabled people and their carers requirements means some people struggle to manage. Strategies for MHM applied by carers include limiting the disabled person’s movements when menstruating and suppressing their menstruation.
The top box in Fig 2 focuses on people with intellectual impairments. This review has shown that some people with intellectual impairments do not always understand or follow social and cultural norms [ 35 – 37 , 43 ], or wear a menstrual product [ 34 , 35 ]. This group face challenges in understanding PMS and communicating when in discomfort [ 33 – 41 ]. Carers reported subsequent ‘menstrual behaviours’ make them feel stressed, embarrassed and they coped by not letting their daughters leave the home or sought ways to supress their menstruation [ 35 ]. The authors propose that if repetitive, accessible MHM information and training is provided regularly to the persons with intellectual impairments, they may get a deeper understanding of cultural and social norms and be better able to manage their menstruation more independently.
The bottom box in Fig 2 focuses on findings related to carers, which highlights an absence of standards and training on providing menstrual care in the institutions covered in the studies [ 42 , 48 , 49 ]. Findings show that professional carers dislike providing menstrual care [ 42 ]. If combined, these two factors might mean that a disabled person’s dignity and personal hygiene is compromised in these institutional settings.
The review found that MHM training and support is not provided to family members who care for daughters with intellectual impairments [ 34 ], and that mothers also dislike providing menstrual care [ 35 , 50 , 52 ]. Mothers reported an inability to see how menstruation benefit their daughters [ 35 ], which is intertwined with the societal belief that disabled people should not be parents or sexual beings [ 53 ]. Disability and menstruation related taboos discourages open dialogue, meaning mothers do not seek advice or support, because they view the provision of menstrual care as a private issue [ 34 , 35 ].
In addition to the findings captured in Fig 2 , included studies also investigated the disabled person’s preference of menstrual product [ 34 , 35 , 44 , 45 ]. Research participants, with a physical disability, reported low levels of satisfaction with the menstrual product used (sanitary pads with and without tampons), stating that they find the products uncomfortable, difficult to place and use with catheters [ 44 ].
There is limited evidence about the MHM requirements of disabled people, interventions to meet these and an assessment of their impact. This is particularly stark in LMICs, so research to investigate these topics must be carried out in these settings. Another key research gap is around the development of standardised measurements of MHM related outcomes for disabled people and their carers [ 54 ], and here the socioecological framework for MHM, adapted to include disabled persons and their carers ( Table 1 ), could be a start. It is useful as the framework recognises MHM outcomes have individual, social and environmental influences that affect menstrual experiences and MHM among the target population.
More research is required to explore the severity of PMS experienced by disabled people compared to non-disabled people, and compared within disability groups with the view of developing mechanisms that enable disabled people to better locate and communicate pain. Finally, research on menstrual product preference and effectiveness for people with different impairments, to understand if the current products on the market are suitable and acceptable, should also be conducted.
To the authors’ knowledge, this is the first systematic review of the MHM requirements of disabled people and their carers. This review restricted the search to studies in the English language and the number of datasets (such as excluding the CINAHL database), so some relevant studies may have been missed. Few studies met the inclusion criteria and across those, there was no standardised measurement of outcomes, meaning an outcome assessment across the studies was difficult. For instance, only seven (32%) studies defined symptoms and practices associated with menstruation, and only 12 (55%) studies identified the means for assessing disability.
There were not enough studies with consistent methods for a meta-analysis. The authors mitigated this by using Banks et al.’s [ 30 ] quality assessment that combines the STROBE and RATS assessment tools for quantitative and qualitative studies [ 31 , 32 ]. The main reasons for risk of bias are due to a sample size being smaller than 100 and the response rate being less than 70%, or not reported. This could lead to an over estimation of impacts. However, there are no great divergences between the findings in papers that have a high risk of bias and those with a medium or high risk of bias, which alleviates concerns.
In conclusion, limited evidence was identified on the MHM requirements of disabled people and their carers, though a number of barriers were identified. This evidence gap is important and must be filled with future research. MHM interventions that address these barriers must be developed, tested and scaled up in partnership with disabled people. If the inaction continues, disabled people’s rights will continue to be violated; they will continue to face social exclusion and potentially sterilisation.
S1 checklist, acknowledgments.
The authors would like to thank WaterAid for seconding the lead author to the LSHTM to carry out this research.
Funding for this review was gratefully received from the Bill and Melinda Gates Foundation ( https://www.gatesfoundation.org ), Development Grant number OPP1159651, Global and Country-Level WSH Advocacy. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
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Introduction. Adolescent menstrual hygiene and proper self-care play an essential role in adolescent health and wellbeing. Besides the risk of physical health issues, notably reproductive tract infections (RTI), improper menstrual hygiene exposes to psychological and social effect on girls.[1,2,3] In most of developing countries, menstruations and related problems are considered an ...
Menstrual hygiene management (MHM) and practices by adolescent females of low and middle-income countries (LMICs) are a severe public health issue. The current systematic review and meta-analysis aimed to estimate the pooled proportion of the hygiene practices, menstrual problems with their associated factors, and the effectiveness of educational interventions on menstrual hygiene among ...
A cross-sectional study was carried out in urban slum area. Data were collected using pre-tested proforma during the period of 1 st June to 31 th August 2017. Among the 100 adolescent girls, 72% were between 15 and 19 years. A maximum of 47% were having high school education. About 47% mothers were illiterate; 27% girls had menarche at 14 years ...
add to the literature on menstrual hygiene (Oster & Thornton, 2011; Hennegan & Montgomery, 2016; Benshaul-Tolonen et al., 2020; A. Benshaul-Tolonen et al., 2021) by studying an intervention ... given the countervailing improvements in hygiene and menstrual hygiene-related knowledge, behavior and stigma documented in Sections 3.3 and 3.4, and ...
soap, or private toilets. We considered interventions providing broader WASH interventions eligible if they reported objectives related to improving facilities for menstrual hygiene/self-care. Care for discomforts and disorders Eligible interventions were those designed to improve access to or availability of health care for menstruation.
Adolescence is a critical period characterized by significant physical, emotional, cognitive, and social changes, including the monthly occurrence of menstruation of adolescent girls. Despite being an inevitable natural event, most societies consider menstruation and menstrual blood as taboos and impure. Such consideration prevents many adolescent girls from proper health education and ...
drinking water, sanitation, and hygiene has used the following definition of MHM: 'Women and adolescent girls are using a clean menstrual management material to absorb or collect menstrual blood, that can be changed in privacy as often as necessary for the duration of a menstrual period, using soap and water for washing the body as required ...
Menstrual health management proves pivotal for the adoption of hygienic practices and the embracement of womanhood from the onset of menarche. Menstrual hygiene is pivotal yet under-addressed among adolescent girls in India. This study aimed to assess the knowledge, attitudes, and practices regarding menstrual hygiene and influencing factors.
This paper is a systematic review of existing literature and argues that menstrual health and hygiene management is a human rights issue. 28,745 articles were screened, with 84 articles included in the full-text review and quality assessment. ... PDF download + Online access.
Menstrual hygiene management (MHM) has gained some attention and several literature reviews have been published. However, both original papers and reviews tend to focus on absorbent access and use ...
Background: Menstrual hygiene management (MHM) and practices by adolescent females of low and middle-income countries (LMICs) are a severe public health issue. The current systematic review and meta-analysis aimed to estimate the pooled proportion of the hygiene practices, menstrual problems with their associated factors, and the effectiveness of educational interventions on menstrual hygiene ...
Background Adolescence is a pivotal stage in human development that presents unique challenges, especially for girls navigating the complexities of menstruation. Despite the importance of menstrual hygiene management for adolescent girls' well-being, this vital aspect of personal health is often overlooked, particularly in regions where cultural stigma prevails. This study examines knowledge ...
This literature review will focus on the following four core objectives: Summarize the existing menstrual health policy environment by sector in India. Establish significant knowledge, attitudes, and practices for menstrual health related behaviors in a school setting in India with a focus on Kolkata.
Menstruation is a natural biological process which is often recognized as a period of change from adolescence to womanhood [1,2,3,4].Despite this, millions of adolescent women worldwide are denied the right to control their menstrual cycle in a dignified and healthy manner [].To ensure healthy and dignified menstruation, Menstrual Hygiene Management (MHM) has received particular attention from ...
ets as cloths made from 100% cotton.Soft, light brown or grey multipurpose cloth made from 100% cotton with a size of ca. 1 m x 1.5 m, fabric weight of 170-180 g/m2, awrap of minimum 21 threads per cm, a weft of 18.5 threads per cm. Inclusion of use and care instructio.
Menstrual hygiene management (MHM) has emerged as a major public health concern around the world . Poor MHM is not only related to adverse health and psychosocial outcomes but also has social and cultural implications that impair the quality of life amongst women of reproductive age group (2, 3). According to the WHO/UNICEF Joint Monitoring ...
Hygiene is the most crucial aspect of living a healthy life, and it is essential during menstruation, and the situation is stuck in India's rural areas, where women still confront hygienic issues, particularly when it comes to menstruation. Background: Menstruation is seldom regarded as an act of immense kindness put forward by a woman to ensure the human race doesn't cease but ironically ...
The systematic review identified 11 relevant articles (plus one additional article published after the search was completed). The review of gray literature led to the inclusion of 55 documents, and the team interviewed 20 key informants representing international donors, non-profit organizations, and academia.
Due to the unset of the menstrual cycle, most of the adolescent girls go through anxiety, fear and stigma in this phase of life. With an objective to conduct a systematic literature review of existing studies on menstrual hygiene and MHHM (Menstrual Health and Hygiene Model) this study is undertaken and by this the researchers have
In this article, we primarily focus on the management of hygiene during menstruation. Menstruation is subjected to many superstitions that may lead to unhygienic practices. Menstruation, often considered a shame or taboo in various poor undedicated and undeveloped classes of society, need awareness for hygiene, sanitation, and management across ...
But improper. menstrual hygiene cause instabilities to female reproductive system and can result in infection. (4) Menstrual hygiene practices like ge nital hair trimming a nd washing of genital ...
Accordingly, the practice of menstrual hygiene management was measured based on the use of a clean menstrual management material to absorb or collect blood during menstruation that can be changed in privacy (assign 1 point for: use of a disposable sanitary pad or new menstrual cloth or re-usable type of pad), adequate frequency of change (1 ...
Abstract. PIP: Puberty initiation rites heralding menarche are common across cultures. Paige (1973) reflected that societies with the highest levels of social rigidity and male solidarity also have the strongest codification of menstrual taboos. This may reflect a need to maintain clear sex roles, often by controlling women and their fertility.
Information related to menstrual hygiene management not only focuses girls but also boys in order to fill the knowledge gap, clear misconceptions and make an environment more conducive of the free movement of girls. ... Books, research papers and exhaustive internet research. REVIEW OF LITERATURE According to Joshi and Fawcett (2001) in a paper ...
The objective of the review is to assess the menstrual hygiene requirements of disabled people, the barriers they face, and the available interventions to help them manage their menstruation hygienically and with dignity. ... An additional 3 records were sourced through the authors' knowledge of the available literature. 2999 duplicates were ...
2. Methodology. A scoping review was found most appropriate as it provides a broad overview of evidence on the topic (Peters et al., Citation 2020).Given the novelty of the topic and thus the limited availability of evidence, a scoping review was chosen as the preferred method (Munn et al., Citation 2018).The protocol (Appendix 1) for this study was developed in accordance with the JBI ...