Lost in transition: menstrual experiences of intellectually disabled school-going adolescents in Delhi, India

Issues around reproductive health of intellectually disabled adolescents have received limited attention in India. This study aimed to bring to light these issues to inform policy and practice surrounding reproductive health among intellectually disabled adolescents. The objectives of this study were to understand the problems encountered by intellectually disabled adolescents and their primary caretakers during management of the adolescent’s menstrual cycle, and to explore the strategies adopted to overcome them. Using qualitative methodology, in-depth interviews were carried out with 23 primary caretakers (all mothers) of adolescent girls in the age group of 11–19 years with IQ of 20–50 were interviewed using in-depth interviews. The mothers of adolescents were selected using purposive sampling and grounded theory methodology was followed for data analysis. The adolescents faced a whole range of issues; from not being able to change sanitary napkins due to physical constraints, to not being able to communicate their physical discomforts, such as stomach cramps, to their caretakers. Their caretakers adopted various strategies such as changing the sanitary napkins for the adolescent themselves, trying to train the adolescent to maintain hygiene, or in some cases even surgical removal of the adolescent’s uterus for the cessation of menstruation. Overall, the adolescents did not play a very significant role in the management of their own menstruation, which might prevent them from achieving reproductive health to the best of their potential.