Int J Adolesc Med Health 2015; 27(1): 65–68

Ganesh Arun Joshi and Prajakta Ganesh Joshi*

Study of menstrual patterns in adolescent girls with disabilities in a residential institution Abstract

Introduction

Background: The gynecological health needs of girls with disabilities is an issue related to their rights as individuals. Objective: The objective of this study is to describe the menstrual pattern of girls with disabilities. Materials and methods: A descriptive study was undertaken on thirty girls with different types of disabilities in a residential institution. The diagnosis, type of disability, secondary sexual characters, age at menarche, menstrual pattern and practice of menstrual hygiene was noted. Results: The girls with intellectual disabilities had later age of menarche, irregular cycles and more behaviour problems. The girls with hearing impairment and locomotor disabilities had normal menstrual pattern. The girl with low vision had earlier menarche and regularized cycles. Girls with normal intelligence and mild intellectual disabilities were independent in maintaining menstrual hygiene. The menstrual disorders are managed conservatively in accordance with latest guidelines. Conclusion: Onset of menarche is towards the extremes of normal age range in girls with intellectual disabilities or visual impairment but not in girls with hearing impairments or locomotor disabilities. Girls with disabilities have potential for independent menstrual care. Menstrual disorders were managed conservatively.

The physiology of the menstrual cycle calls for higher level of self care skills in girls. Adolescence is a critical period characterized by the physical and emotional changes that occur at a very fast pace. It tends to bring more difficulties among girls with disabilities due to their compromised learning and motor abilities. Low comprehension in girls with intellectual disabilities, learning restricted to touch in girls with visual impairments, and signs in girls with communication impairment add to the difficulties in teaching menstrual care, which is equally important in terms of their health and social needs. There is scarcity of scientific knowledge in the field of adolescent girls with disabilities. With the advent of a rights-based society and the acceptance of the United Nations Convention on Rights of Persons with Disabilities (UNCRPD) (1), the concerns of women with disabilities have invited special research attention. Hence health care providers and rehabilitation personnel must be familiar with the gynecological needs of girls with disabilities and practically competent to serve their special needs. The objective of this study was to describe the menstrual pattern and learn about problems faced by adolescent girls with varied types of disabilities in a residential institution.

Keywords: adolescent; menstruation; persons with disabilities. DOI 10.1515/ijamh-2014-0016 Received March 16, 2014; accepted April 17, 2014; pre­viously published online May 31, 2014

*Corresponding author: Dr. Prajakta Ganesh Joshi, Assistant Professor, Department of Obstetrics and Gynecology, CMCH-Bhopal, Affiliated to Barkatullah University, Bhopal, India, Phone: +91-755-2751281, Fax: +91-755-2685949, E-mail: [email protected] Ganesh Arun Joshi: Composite Regional Center for Persons with Disabilities, Punarwas Bhavan, Khajuri kala, Piplani, Bhopal, India

Materials and methods The study was carried out on residents of a residential institution caring for abandoned children with different types of disabilities. The ethical guidelines laid down by the Declaration of Helsinki were followed, and informed consent was obtained from the head of the institution and caretakers of the subjects. The WHO definition of adolescents was used, i.e., persons in the age range of 10–19 years. All adolescent and menstruating girls at the institution were included in the study. The authors studied the clinical history and medical records of the students and carried out detailed clinical examination of all the subjects. Based on these findings, the disabilities were diagnosed and categorized. Core study variables included the following: diagnosis, type of disability, severity of disability, secondary sexual characteristics, menarche, menstrual patterns, menstrual hygiene, and menstrual problems.

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66      Joshi and Joshi: Menstrual patterns in adolescent girls with disabilities

Results A total of thirty out of 84 residents in the institution met the inclusion criteria, including twenty-one with intellectual disabilities, three with locomotor disability, one with visual impairment, two with hearing impairment, and three residents with multiple disabilities (Figure 1). Among the 30 girls, 15 were menstruating. The results are summarized in Table 1. Seven girls had attained menarche in the age range of 11–14 years, one girl with low vision had attained menarche at early age (9 years), and seven girls with intellectual disability attained menarche beyond 14  years of age. Two more girls with intellectual disability had not yet attained menarche

by the age of 15 years. Disobedience increased with the onset of menarche, peaking in premenstrual phase in all 11 girls with intellectual disabilities. Trichotillomania in one, violent behavior in one, and inappropriate behaviors (e.g., throwing soaked menstrual pads here and there in house and public masturbation) were noted in three girls with intellectual disabilities. It was found that four girls were on anticonvulsants, including one on antipsychotics. The girls with hearing impairment and locomotor disabilities attained menarche at normal age and had normal menstrual patterns. The girls with mild intellectual disabilities were independent; in comparison, those with moderate intellectual disabilities under supervision and severe intellectual disabilities were fully dependent on their caretakers for maintaining menstrual hygiene (Figure 2).

Locomotor, 3

Hearing, 2

Visual, 1

Multiple, 3 Intellectual, 21

Independence in menstrual care, %

100 90 80 70 60

No

50

Yes with help

40

Yes

30 20 10 0 Normal

Mild

Moderate

Severe

Figure 2 Independence of self care during menstruation.

Figure 1 Distribution of cases. Table 1 Findings of the study. S. no.  

Heading

1. 2.

Total subjects   Secondary sexual characteristics     Menstruating         Menstrual pattern     Menstrual flow     Dysmenorrhea     Menstrual care    

3.

i. ii. iii. iv.

                             



No. 30 Present = 23# Absent = 7 15



              Regular = 13   Irregular = 2$   Average = 14   AUB = 1   Yes = 3   No = 12   Self care = 10*   Dependant = 5  

Remarks 15 had not attained menarche # 8 had not attained menarche Intellectual disability = 11 Hearing impairment = 2 Low vision = 1 Locomotor disability = 1 $1 had recently attained menarche AUB managed with mefenamic acid Managed with hot water bottle or mefenamic acid *Two moderate intellectually disabled required supervision

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Joshi and Joshi: Menstrual patterns in adolescent girls with disabilities      67

Discussion The available literature suggests that secondary sexual characters should develop by 13  years and menarche by 16  years in normal population (2). However, literature on issues of girls with disabilities is limited. Blind girls apparently undergo menarche earlier than sighted girls, suggesting some influence of light (2). Our study came up with a similar finding of early menarche in a girl with low vision who attained regular cycles within two months of menarche. Zacharin et al. found that the mean age of menarche (12.3 years) and severity of menstrual problems were similar to the normal population in girls with cerebral palsy (3). Our study found that girls with locomotor disabilities and hearing disabilities attained menarche in the range of 11–14 years. Menarche is earlier in obese girls and delayed in girls with severe malnutrition (4). Problems in swallowing due to poor coordination of different oral structures in girls with developmental disabilities result in malnutrition. The menstrual cycle in normal girls initially takes two to three years to become more regular (4). Quint has reported that follicular stimulating hormone and luteinizing hormone responses to gonadotrophin-releasing hormones are impaired during initial pubertal stages in girls with developmental disabilities (5). Murialdo et  al. observed different alterations of hypothalamo-pituitary ovarian axis and blunted luteal progesterone surge with polycystic ovarian syndrome and hyperandrogenism in girls with epilepsy (6). Salerno et  al found that physical growth and secondary sexual development were retarded in all parameters among intellectually disabled patients with epilepsy (7). Ranganath and Rajangam reported menarche at the average age of 15.5 years; in some cases, delayed appearance of secondary sexual characters were observed beyond the second decade of life in Indian women with Down’s syndrome (8). In our study, seven girls with intellectual disabilities attained menarche after 14 years, and two more had not yet attained menarche by 15 years. Irregular bleeding and mood swings are quite common in the girls with disabilities (9). Quint reported that dysmenorrhea may be manifested as abnormal behavior in girls with disabilities (5). Secondary amenorrhea may have causes other than malnutrition and, hence, should be thoroughly investigated. Drugs also affect the menstrual regularity. Antipsychotics cause hyperprolactinemia, while antiepileptic drugs (phenytoin and valproate) induce liver enzymes to cause the rapid destruction of sex steroids. Polycystic ovarian disorder occurs in 10%–20% of girls with epilepsy (5). In our study, there were four

girls on antiepileptics, of whom three had not attained menarche beyond 13 years, while one was on antipsychotics who attained menarche at 11  years and had normal cycles. Grover found that only two out of 107 women with intellectual disability required surgical management for menstrual issues, while the remaining issues could be managed with information, advice, and pharmacotherapy (10). In our study, the menstrual problems were managed with pharmacotherapy (mefenamic acid for dysmenorrhea and menorrhagia) and physical agents (hot fomentation with water bag for dysmenorrhea) only. Taylor et al. reported that sexual abuse in girls with intellectual disabilities is more likely to occur from a known person (11). The caretakers need to be aware of such a possibility. Our study hints that girls with moderate intellectual disabilities may be trained for independent menstrual care. However, behavioral modification and psychotherapeutic drugs may be required. The possibility of dysmenorrhea should also be kept in mind and managed accordingly, in order to resolve existing behavioral problems. Guidelines are available for menstrual training of girls with disabilities (9, 11). Adolescents with disabilities are a unique group whose needs intersect with those of adolescents without disabilities. Listening to the caretakers and educating them to prepare the patients is essential. Patients, parents, and staff are satisfied when gynecological needs are met in an empathetic and thorough fashion (12). To train the girls, food coloring by red color may be used to signify the red color of the blood while training them before menarche. Negative reinforcement, such as physical and mental punishments, should never be used. In comparison, positive reinforcements, such as praises and use of oil massage and warm baths in the pre-menstrual and menstrual phases, are soothing and helpful for imparting menstrual training. If possible, the girl should be involved while shopping for her pads. Training to wear panty liners in the menstrual phase should also be provided. They should be trained to change pads in private places. Shoulder bags should be given so that they can have a container where they can carry the pads. A full packet of pads becoming empty gradually can also help these girls understand the usage of pads. Girls with intellectual disabilities may use pressure stamps on specially designed calendar to maintain the menstrual calendar. Modeling by use of dolls with proper anatomical features is also helpful. Mothers and sisters can be most helpful in menstrual training. Girls with visual impairment need touch-based teaching aids, such as Velcro and self-inking stamps. Girls with communication disabilities need signs, symbols, objects, and colored communication Brought to you by | Kungliga Tekniska Högskolan Authenticated Download Date | 1/8/17 4:56 AM

68      Joshi and Joshi: Menstrual patterns in adolescent girls with disabilities cards for training. Girls with urinary incontinence may already be using diapers, which serve a dual purpose; hence, they do not require additional pads during their menstrual period. While imparting menstrual training, the counselor should be comfortable and speak in a soft but firm manner. For the management of abnormal uterine bleeding, first line treatment options should be safe, minimally invasive, and non-permanent (13). Preferably non steroidal anti-inflammatory drugs (NSAID), such as mefenamic acid, should be used because they have minimal adverse effects. Iron supplements should also be given. In intractable cases of menorrhagia, levo norgestrel (LNG) intrauterine contraceptive device (IUCD) may be implanted under anesthesia (13). It results in a 70%–80% reduction in blood loss. Depot medroxyprogesterone acetate (DMPA) should be the last choice as it causes bone loss that may raise concern in girls with decreased mobility who are likely to have less bone mass already. DMPA is injected once every 10–12 weeks with mandatory calcium supplements. It reduces blood loss by 90% (13). Endometrial ablation is not recommended because it is considered to be irreversible. Hysterectomy is not recommended (13).

Recommendations Physicians and specialists should involve paramedical personnel including nurses, occupational therapists and clinical psychologists in menstrual management customized to specific abilities of the girls with disabilities. Special educators should be involved from the onset of adolescence for their menstrual training. Awareness programs should be organized for the caretakers at periodic intervals so that they can increase their knowledge and skills pertaining to available measures that include medical interventions to effectively tackle forthcoming menstrual issues of adolescent girls with disabilities. A similar population-study with a large sample size is required.

Limitations The number of subjects is limited. This is because the study was conducted on a single residential institution. Dysmenorrhea might have been under-reported due to the poor communication skills of the girls with disability.

Conclusion Girl with visual impairment had early onset of menarche and early attainment of normal menstrual pattern. Girls with locomotor or hearing impairment had normal menstrual patterns. Girls with intellectual disabilities had delayed development of secondary sexual characteristics, onset of menarche at upper normal range, irregular menstrual patterns, increasing behavioral problems after menarche with peaks during the premenstrual and menstrual phases. Finally, those with severe intellectual disabilities are dependent on caretakers to maintain menstrual hygiene. Based on our findings, menstrual problems should be managed conservatively. Conflict of interest statement: There are no financial or other conflicts of interests involved with this study.

References 1. United Nations Convention on Rights of persons with disabilities. Available from: URL: http://www.un.org/disabilities. 2. Rebar RW. Puberty. In: Berek JS, editor. Novak’s gynecology. 13th ed. Philadelphia: Lippincott Williams Wilkins, 2002:843. 3. Zacharin M, Savasi I, Grover S. The impact of menstruation in adolescents with disabilities related to cerebral palsy. Arch Dis Child 2010;95:526–30. 4. Hickey M, Balen A. Menstrual disorders in adolescence: ­investigation and management. Human Reprod Update 2003;9:493–504. 5. Quint EH. Menstrual issues in adolescents with physical and developmental disabilities. Ann NY Acad Sci 2008;1135:230–6. 6. Murialdo G, Galimberti CA, Magri F, Sampaolo P, Copello F, et al. Menstrual cycle and ovary alteration in women with epilepsy on antiepileptic therapy. J Endocrinol Invest 1997;20:519–26. 7. Salerno LJ, Park JK, Giannini MJ. Reproductive capacity of the mentally retarded. J Reprod Med 1975;14:123–9. 8. Ranganath P, Rajangam S. Menstrual history in women with Down syndrome – a review. Indian J Hum Genet 2004;10:18–21. 9. Kaur H, Butler J, Trumble S. Options for menstrual management – resources and information for staff and carers of women with intellectual disability. Monash University. Revised in 2003 by Burbidge M, Butler J, Tracy J. Available at: http://www.cddh. monash.org/assets/menstrual-management-guide-staff.pdf. 10. Grover SR. Menstrual and contraceptive management in women with an intellectual disability. Med J Aust 2002;176:108–10. 11. Taylor M, Carlson G, Griffin J, Wilson J. Managing menstruation, 4th ed. University of Queensland. 1994. Revised by Amanda Loo-Gee in 2010. Available from: URL: http://www.som.ug.edu. au/research/qcidd/. 12. Furman LM. Institutionalized disabled adolescents: gynecologic care – the pediatrician’s role. Clin Pediatr (Phila) 1989;28:163–70. 13. ACOG committee opinion. Menstrual manipulation of adolescents with disabilities. 2009 Dec (reaffirmed 2012);448:1–4.

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Study of menstrual patterns in adolescent girls with disabilities in a residential institution.

The gynecological health needs of girls with disabilities is an issue related to their rights as individuals...
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