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.Alur, M. (2001) ‘Some cultural and moral implications of inclusive education in India: a personal view’, Journal of Moral Education 30(3): 287–92 <http://dx.doi.org/10.1080/03057240120077291>.
Bhartiya, A. (2013) ‘Menstruation, religion and society’, International Journal of Social Science and Humanity 3(6): 523–7 <http://dx.doi.org/10.7763/IJSSH.2013.V3.296>.
Chou, Y.-C. and Lu, Z.-Y.J. (2012) ‘Caring for a daughter with intellectual disabilities in managing menstruation: a mother’s perspective’, Journal of Intellectual and Developmental Disability 37(1): 1–10 <http://dx.doi.org/10.3109/13668250.2011.651615>.
Daley, T.C. (2004) ‘From symptom recognition to diagnosis: children with autism in urban India’, Social Science & Medicine 58(7): 1323–35 <https://doi.org/10.1016/S0277-9536(03)00330-7>.
Datta, K. (2017) ‘Noida schoolgirls learn about menstrual hygiene’, Hindustan Times [online], 1 April <www.hindustantimes.com/education/noida-schoolgirls-learn-about-menstrual-hygiene/story-8ve9CqSS7AyCeUFTVCYPUJ.html> [accessed 14 August 2017].
Diekema, D.S. (2003) ‘Involuntary sterilization of persons with mental retardation: an ethical analysis’, Mental Retardation and Developmental Disabilities 9(1): 21–6 <http://dx.doi.org/10.1002/mrdd.10053>.
Edwardraj, S., Mumtaj, K., Prasad, J.H., Kuruvilla, A. and Jacob, K.S. (2010) ‘Perceptions about intellectual disability: a qualitative study from Vellore, South India’, Journal of Intellectual Disability Research 54(8): 736–48 <http://dx.doi.org/10.1111/j.1365-2788.2010.01301.x> [accessed 14 August 2017].
Ellis, B.J., Giudice, M., Dishion, T.J., Figueredo, A.J., Gray, P., Griskevicius, V., Hawley, P.H., Jacobs, W.J., James, J., Volk, A.A. and Wilson, D.S. (2012) ‘The evolutionary basis of risky adolescent behavior: implications for science, policy, and practice’, Development Psychology 48(3): 598–623 <http://dx.doi.org/10.1037/a0026220>.
Garg, S. and Anand, T. (2015) ‘Menstruation related myths in India: strategies for combating it’, Journal of Family Medicine and Primary Care 4(2): 184–6 <http://dx.doi.org/10.4103/2249-4863.154627>.
Griffin, J., Carlson, G., Taylor, M. and Wilson, J. (1994) ‘Menstrual management and intellectual disability: new perspectives’, Occupational Therapy International 1: 141–57 <http://dx.doi.org/10.1002/oti.6150010303>.
Gomez, M.T., Carlson, G.M. and Dooren, K.V. (2012) ‘Practical approaches to supporting young women with intellectual disabilities and high support needs with their menstruation’, Health Care for Women International 33(8): 678–94 <http://dx.doi.org/10.1080/07399332.2012.684812>.
Government of India (2003) ‘Survey of disabled persons in India: NSS 58th round (July-Dec 2002)’ [database], National Sample Survey Office <www.ilo.org/surveydata/index.php/catalog/196/study-description> [accessed 21 November 2014].
Government of India (2015) Menstrual Hygiene Management: National Guidelines [pdf], Ministry of Drinking Water and Sanitation <www.mdws.gov.in/sites/default/files/Menstrual%20Hygiene%20Management%20-%20Guidelines.pdf> [accessed 1 August 2017].
Grover, S.R. (2002) ‘Menstrual and contraceptive management in women with an intellectual disability’, Medicine and the Community 176: 108–10.
Gupta, A. and Singhal, N. (2005) ‘Psychosocial support for families of children with autism’, Asia Pacific Disability Rehabilitation Journal 16(2): 62–83.
Hindustan Times (2016) ‘Laws on rights of persons with disabilities notified’, 30 December 2016 [online] <www.hindustantimes.com/india-news/law-on-rights-of-persons-with-disabilities-notified/story-E0Vpnt3r1v8sXNkxPdhvkL.html> [accessed 13 June 2017].
Holness, W. (2013) ‘Informed consent for sterilisation of women and girls with disabilities in the light of the Convention on the Rights of Persons with Disabilities’, Agenda: Empowering Women for Gender Equity 27(4): 35–54.
Kabra, M. and Gulati, S. (2003) ‘Mental retardation’, The Indian Journal of Pediatrics 70: 153–8.
Kamaruddin, K. and Mamat, N. (2015) ‘Stress among the parents of children with learning disabilities: a demographical analysis’, International Journal of Humanities Social Sciences and Education 2(9): 194–200.
Kishore, M.T. (2011) ‘Disability impact and coping in mothers of children with intellectual disabilities and multiple disabilities’, Journal of Intellectual Disabilities 15(4): 241–51.
Klett, L.S. and Turan, Y. (2012) ‘Generalized effects of social stories with task analysis for teaching menstrual care to three young girls with autism’, Sexuality and Disability 30(3): 319–36 <http://dx.doi.org/10.1007/s11195-011-9244-2>.
Lim, F., Downs, J., Li, J., Bao, X. and Leonard, H. (2013) ‘Caring for a child with severe intellectual disability in China: the example of Rett syndrome’, Disability and Rehabilitation 35(4): 343–51 <http://dx.doi.org/10.3109/09638288.2012.715720>.
Lin, L.P., Lin, P.Y., Hsu, S.W., Lin, J.D., Lai, C.I., Chien, W.C. and Lin, F.G. (2011) ‘Caregiver awareness of reproductive health issues for women with intellectual disabilities’, BMC Public Health 11: 1471–2458 <http://dx.doi.org/10.1186/1471-2458-11-59>.
Park, H.R. (2013) Menstrual Support for Females with Developmental Disabilities: Survey and Interview of Parents or Caretakers [pdf], PhD dissertation, University of Kansas <https://kuscholarworks.ku.edu/bitstream/handle/1808/15062/Park_ku_0099D_13173_DATA_1.pdf> [accessed 22 September 2017].
Patton, G.C., Hibbert, M.E., Carlin, J., Shao, Q., Rosier, M., Caust, J. and Bowes, G. (1996) ‘Menarche and the onset of depression and anxiety in Victoria, Australia’, Journal of Epidemiology and Community Health 50: 661–6.
Peters, S. (2007) ‘“Education for all?” A historical analysis of international inclusive education policy and individuals with disabilities’, Journal of Disability Policy Studies 18(2): 98–108.
Quint, E.H. (2008) ‘Menstrual issues in adolescents with physical and developmental disabilities’, Annals of the New York Academy of Sciences 1135: 230–6 <http://dx.doi.org/10.1196/annals.1429.020>.
Reddy, V.M. and Chandrashekar, C.R. (1998) ‘Prevalence of mental and behavioural disorders in India: a meta-analysis’, Indian Journal of Psychiatry 40: 149–57.
Rodgers, J. and Lipscombe, J. (2005) ‘The nature and extent of help given to women with intellectual disabilities to manage menstruation’, Journal of Intellectual and Developmental Disability 30(1): 45–52.
Sapkota, D., Sharma, D., Pokharel, H.P., Budhathoki, S.S., Khanal, V.K. (2013) ‘Knowledge and practices regarding menstruation among school going adolescents of rural Nepal’, Journal of Kathmandu Medical College 2(3): 122–8 <http://dx.doi.org/10.3126/jkmc.v2i3.9962>.
Shastri, P.C. (2008) ‘Future perspective of planning child guidance services in India’, Indian Journal of Psychiatry 50: 241–3 <http://dx.doi.org/10.4103/0019-5545.44744>.
Sreeja, I., Sandhya, G., Rakesh, L. and Singh, M. (2008) ‘Comparison of burden between family caregivers of patients having schizophrenia and epilepsy’, The Internet Journal of Epidemiology 6: 2.
Swenson, I. and Havens, B. (1987) ‘Menarche and menstruation: a review of the literature’, Journal of Community Health Nursing 4(4): 199–210.
Tilley, E., Walmsley, J., Earle, S. and Atkinson, D. (2012) ‘The silence is roaring: sterilization, reproductive rights and women with intellectual disabilities’, Disability and Society 27(3): 413–26 <http://dx.doi.org/10.1080/09687599.2012.654991>.
Wikler, L. (1981) ‘Chronic stresses of families of mentally retarded children’, Family Relations 30(2): 281–8.
World Health Organization (WHO) (1985) Mental Retardation: Meeting the Challenge [pdf], WHO offset publication no. 86, Geneva: WHO <http://apps.who.int/iris/bitstream/10665/39691/1/WHO_OFFSET_86.pdf>
Alur, M. (2001) ‘Some cultural and moral implications of inclusive education in India: a personal view’, Journal of Moral Education 30(3): 287–92 <http://dx.doi.org/10.1080/03057240120077291>.
Bhartiya, A. (2013) ‘Menstruation, religion and society’, International Journal of Social Science and Humanity 3(6): 523–7 <http://dx.doi.org/10.7763/IJSSH.2013.V3.296>.
Chou, Y.-C. and Lu, Z.-Y.J. (2012) ‘Caring for a daughter with intellectual disabilities in managing menstruation: a mother’s perspective’, Journal of Intellectual and Developmental Disability 37(1): 1–10 <http://dx.doi.org/10.3109/13668250.2011.651615>.
Daley, T.C. (2004) ‘From symptom recognition to diagnosis: children with autism in urban India’, Social Science & Medicine 58(7): 1323–35 <https://doi.org/10.1016/S0277-9536(03)00330-7>.
Datta, K. (2017) ‘Noida schoolgirls learn about menstrual hygiene’, Hindustan Times [online], 1 April <www.hindustantimes.com/education/noida-schoolgirls-learn-about-menstrual-hygiene/story-8ve9CqSS7AyCeUFTVCYPUJ.html> [accessed 14 August 2017].
Diekema, D.S. (2003) ‘Involuntary sterilization of persons with mental retardation: an ethical analysis’, Mental Retardation and Developmental Disabilities 9(1): 21–6 <http://dx.doi.org/10.1002/mrdd.10053>.
Edwardraj, S., Mumtaj, K., Prasad, J.H., Kuruvilla, A. and Jacob, K.S. (2010) ‘Perceptions about intellectual disability: a qualitative study from Vellore, South India’, Journal of Intellectual Disability Research 54(8): 736–48 <http://dx.doi.org/10.1111/j.1365-2788.2010.01301.x> [accessed 14 August 2017].
Ellis, B.J., Giudice, M., Dishion, T.J., Figueredo, A.J., Gray, P., Griskevicius, V., Hawley, P.H., Jacobs, W.J., James, J., Volk, A.A. and Wilson, D.S. (2012) ‘The evolutionary basis of risky adolescent behavior: implications for science, policy, and practice’, Development Psychology 48(3): 598–623 <http://dx.doi.org/10.1037/a0026220>.
Garg, S. and Anand, T. (2015) ‘Menstruation related myths in India: strategies for combating it’, Journal of Family Medicine and Primary Care 4(2): 184–6 <http://dx.doi.org/10.4103/2249-4863.154627>.
Griffin, J., Carlson, G., Taylor, M. and Wilson, J. (1994) ‘Menstrual management and intellectual disability: new perspectives’, Occupational Therapy International 1: 141–57 <http://dx.doi.org/10.1002/oti.6150010303>.
Gomez, M.T., Carlson, G.M. and Dooren, K.V. (2012) ‘Practical approaches to supporting young women with intellectual disabilities and high support needs with their menstruation’, Health Care for Women International 33(8): 678–94 <http://dx.doi.org/10.1080/07399332.2012.684812>.
Government of India (2003) ‘Survey of disabled persons in India: NSS 58th round (July-Dec 2002)’ [database], National Sample Survey Office <www.ilo.org/surveydata/index.php/catalog/196/study-description> [accessed 21 November 2014].
Government of India (2015) Menstrual Hygiene Management: National Guidelines [pdf], Ministry of Drinking Water and Sanitation <www.mdws.gov.in/sites/default/files/Menstrual%20Hygiene%20Management%20-%20Guidelines.pdf> [accessed 1 August 2017].
Grover, S.R. (2002) ‘Menstrual and contraceptive management in women with an intellectual disability’, Medicine and the Community 176: 108–10.
Gupta, A. and Singhal, N. (2005) ‘Psychosocial support for families of children with autism’, Asia Pacific Disability Rehabilitation Journal 16(2): 62–83.
Hindustan Times (2016) ‘Laws on rights of persons with disabilities notified’, 30 December 2016 [online] <www.hindustantimes.com/india-news/law-on-rights-of-persons-with-disabilities-notified/story-E0Vpnt3r1v8sXNkxPdhvkL.html> [accessed 13 June 2017].
Holness, W. (2013) ‘Informed consent for sterilisation of women and girls with disabilities in the light of the Convention on the Rights of Persons with Disabilities’, Agenda: Empowering Women for Gender Equity 27(4): 35–54.
Kabra, M. and Gulati, S. (2003) ‘Mental retardation’, The Indian Journal of Pediatrics 70: 153–8.
Kamaruddin, K. and Mamat, N. (2015) ‘Stress among the parents of children with learning disabilities: a demographical analysis’, International Journal of Humanities Social Sciences and Education 2(9): 194–200.
Kishore, M.T. (2011) ‘Disability impact and coping in mothers of children with intellectual disabilities and multiple disabilities’, Journal of Intellectual Disabilities 15(4): 241–51.
Klett, L.S. and Turan, Y. (2012) ‘Generalized effects of social stories with task analysis for teaching menstrual care to three young girls with autism’, Sexuality and Disability 30(3): 319–36 <http://dx.doi.org/10.1007/s11195-011-9244-2>.
Lim, F., Downs, J., Li, J., Bao, X. and Leonard, H. (2013) ‘Caring for a child with severe intellectual disability in China: the example of Rett syndrome’, Disability and Rehabilitation 35(4): 343–51 <http://dx.doi.org/10.3109/09638288.2012.715720>.
Lin, L.P., Lin, P.Y., Hsu, S.W., Lin, J.D., Lai, C.I., Chien, W.C. and Lin, F.G. (2011) ‘Caregiver awareness of reproductive health issues for women with intellectual disabilities’, BMC Public Health 11: 1471–2458 <http://dx.doi.org/10.1186/1471-2458-11-59>.
Park, H.R. (2013) Menstrual Support for Females with Developmental Disabilities: Survey and Interview of Parents or Caretakers [pdf], PhD dissertation, University of Kansas <https://kuscholarworks.ku.edu/bitstream/handle/1808/15062/Park_ku_0099D_13173_DATA_1.pdf> [accessed 22 September 2017].
Patton, G.C., Hibbert, M.E., Carlin, J., Shao, Q., Rosier, M., Caust, J. and Bowes, G. (1996) ‘Menarche and the onset of depression and anxiety in Victoria, Australia’, Journal of Epidemiology and Community Health 50: 661–6.
Peters, S. (2007) ‘“Education for all?” A historical analysis of international inclusive education policy and individuals with disabilities’, Journal of Disability Policy Studies 18(2): 98–108.
Quint, E.H. (2008) ‘Menstrual issues in adolescents with physical and developmental disabilities’, Annals of the New York Academy of Sciences 1135: 230–6 <http://dx.doi.org/10.1196/annals.1429.020>.
Reddy, V.M. and Chandrashekar, C.R. (1998) ‘Prevalence of mental and behavioural disorders in India: a meta-analysis’, Indian Journal of Psychiatry 40: 149–57.
Rodgers, J. and Lipscombe, J. (2005) ‘The nature and extent of help given to women with intellectual disabilities to manage menstruation’, Journal of Intellectual and Developmental Disability 30(1): 45–52.
Sapkota, D., Sharma, D., Pokharel, H.P., Budhathoki, S.S., Khanal, V.K. (2013) ‘Knowledge and practices regarding menstruation among school going adolescents of rural Nepal’, Journal of Kathmandu Medical College 2(3): 122–8 <http://dx.doi.org/10.3126/jkmc.v2i3.9962>.
Shastri, P.C. (2008) ‘Future perspective of planning child guidance services in India’, Indian Journal of Psychiatry 50: 241–3 <http://dx.doi.org/10.4103/0019-5545.44744>.
Sreeja, I., Sandhya, G., Rakesh, L. and Singh, M. (2008) ‘Comparison of burden between family caregivers of patients having schizophrenia and epilepsy’, The Internet Journal of Epidemiology 6: 2.
Swenson, I. and Havens, B. (1987) ‘Menarche and menstruation: a review of the literature’, Journal of Community Health Nursing 4(4): 199–210.
Tilley, E., Walmsley, J., Earle, S. and Atkinson, D. (2012) ‘The silence is roaring: sterilization, reproductive rights and women with intellectual disabilities’, Disability and Society 27(3): 413–26 <http://dx.doi.org/10.1080/09687599.2012.654991>.
Wikler, L. (1981) ‘Chronic stresses of families of mentally retarded children’, Family Relations 30(2): 281–8.
World Health Organization (WHO) (1985) Mental Retardation: Meeting the Challenge [pdf], WHO offset publication no. 86, Geneva: WHO <http://apps.who.int/iris/bitstream/10665/39691/1/WHO_OFFSET_86.pdf>
Alur, M. (2001) ‘Some cultural and moral implications of inclusive education in India: a personal view’, Journal of Moral Education 30(3): 287–92 <http://dx.doi.org/10.1080/03057240120077291>.
Bhartiya, A. (2013) ‘Menstruation, religion and society’, International Journal of Social Science and Humanity 3(6): 523–7 <http://dx.doi.org/10.7763/IJSSH.2013.V3.296>.
Chou, Y.-C. and Lu, Z.-Y.J. (2012) ‘Caring for a daughter with intellectual disabilities in managing menstruation: a mother’s perspective’, Journal of Intellectual and Developmental Disability 37(1): 1–10 <http://dx.doi.org/10.3109/13668250.2011.651615>.
Daley, T.C. (2004) ‘From symptom recognition to diagnosis: children with autism in urban India’, Social Science & Medicine 58(7): 1323–35 <https://doi.org/10.1016/S0277-9536(03)00330-7>.
Datta, K. (2017) ‘Noida schoolgirls learn about menstrual hygiene’, Hindustan Times [online], 1 April <www.hindustantimes.com/education/noida-schoolgirls-learn-about-menstrual-hygiene/story-8ve9CqSS7AyCeUFTVCYPUJ.html> [accessed 14 August 2017].
Diekema, D.S. (2003) ‘Involuntary sterilization of persons with mental retardation: an ethical analysis’, Mental Retardation and Developmental Disabilities 9(1): 21–6 <http://dx.doi.org/10.1002/mrdd.10053>.
Edwardraj, S., Mumtaj, K., Prasad, J.H., Kuruvilla, A. and Jacob, K.S. (2010) ‘Perceptions about intellectual disability: a qualitative study from Vellore, South India’, Journal of Intellectual Disability Research 54(8): 736–48 <http://dx.doi.org/10.1111/j.1365-2788.2010.01301.x> [accessed 14 August 2017].
Ellis, B.J., Giudice, M., Dishion, T.J., Figueredo, A.J., Gray, P., Griskevicius, V., Hawley, P.H., Jacobs, W.J., James, J., Volk, A.A. and Wilson, D.S. (2012) ‘The evolutionary basis of risky adolescent behavior: implications for science, policy, and practice’, Development Psychology 48(3): 598–623 <http://dx.doi.org/10.1037/a0026220>.
Garg, S. and Anand, T. (2015) ‘Menstruation related myths in India: strategies for combating it’, Journal of Family Medicine and Primary Care 4(2): 184–6 <http://dx.doi.org/10.4103/2249-4863.154627>.
Griffin, J., Carlson, G., Taylor, M. and Wilson, J. (1994) ‘Menstrual management and intellectual disability: new perspectives’, Occupational Therapy International 1: 141–57 <http://dx.doi.org/10.1002/oti.6150010303>.
Gomez, M.T., Carlson, G.M. and Dooren, K.V. (2012) ‘Practical approaches to supporting young women with intellectual disabilities and high support needs with their menstruation’, Health Care for Women International 33(8): 678–94 <http://dx.doi.org/10.1080/07399332.2012.684812>.
Government of India (2003) ‘Survey of disabled persons in India: NSS 58th round (July-Dec 2002)’ [database], National Sample Survey Office <www.ilo.org/surveydata/index.php/catalog/196/study-description> [accessed 21 November 2014].
Government of India (2015) Menstrual Hygiene Management: National Guidelines [pdf], Ministry of Drinking Water and Sanitation <www.mdws.gov.in/sites/default/files/Menstrual%20Hygiene%20Management%20-%20Guidelines.pdf> [accessed 1 August 2017].
Grover, S.R. (2002) ‘Menstrual and contraceptive management in women with an intellectual disability’, Medicine and the Community 176: 108–10.
Gupta, A. and Singhal, N. (2005) ‘Psychosocial support for families of children with autism’, Asia Pacific Disability Rehabilitation Journal 16(2): 62–83.
Hindustan Times (2016) ‘Laws on rights of persons with disabilities notified’, 30 December 2016 [online] <www.hindustantimes.com/india-news/law-on-rights-of-persons-with-disabilities-notified/story-E0Vpnt3r1v8sXNkxPdhvkL.html> [accessed 13 June 2017].
Holness, W. (2013) ‘Informed consent for sterilisation of women and girls with disabilities in the light of the Convention on the Rights of Persons with Disabilities’, Agenda: Empowering Women for Gender Equity 27(4): 35–54.
Kabra, M. and Gulati, S. (2003) ‘Mental retardation’, The Indian Journal of Pediatrics 70: 153–8.
Kamaruddin, K. and Mamat, N. (2015) ‘Stress among the parents of children with learning disabilities: a demographical analysis’, International Journal of Humanities Social Sciences and Education 2(9): 194–200.
Kishore, M.T. (2011) ‘Disability impact and coping in mothers of children with intellectual disabilities and multiple disabilities’, Journal of Intellectual Disabilities 15(4): 241–51.
Klett, L.S. and Turan, Y. (2012) ‘Generalized effects of social stories with task analysis for teaching menstrual care to three young girls with autism’, Sexuality and Disability 30(3): 319–36 <http://dx.doi.org/10.1007/s11195-011-9244-2>.
Lim, F., Downs, J., Li, J., Bao, X. and Leonard, H. (2013) ‘Caring for a child with severe intellectual disability in China: the example of Rett syndrome’, Disability and Rehabilitation 35(4): 343–51 <http://dx.doi.org/10.3109/09638288.2012.715720>.
Lin, L.P., Lin, P.Y., Hsu, S.W., Lin, J.D., Lai, C.I., Chien, W.C. and Lin, F.G. (2011) ‘Caregiver awareness of reproductive health issues for women with intellectual disabilities’, BMC Public Health 11: 1471–2458 <http://dx.doi.org/10.1186/1471-2458-11-59>.
Park, H.R. (2013) Menstrual Support for Females with Developmental Disabilities: Survey and Interview of Parents or Caretakers [pdf], PhD dissertation, University of Kansas <https://kuscholarworks.ku.edu/bitstream/handle/1808/15062/Park_ku_0099D_13173_DATA_1.pdf> [accessed 22 September 2017].
Patton, G.C., Hibbert, M.E., Carlin, J., Shao, Q., Rosier, M., Caust, J. and Bowes, G. (1996) ‘Menarche and the onset of depression and anxiety in Victoria, Australia’, Journal of Epidemiology and Community Health 50: 661–6.
Peters, S. (2007) ‘“Education for all?” A historical analysis of international inclusive education policy and individuals with disabilities’, Journal of Disability Policy Studies 18(2): 98–108.
Quint, E.H. (2008) ‘Menstrual issues in adolescents with physical and developmental disabilities’, Annals of the New York Academy of Sciences 1135: 230–6 <http://dx.doi.org/10.1196/annals.1429.020>.
Reddy, V.M. and Chandrashekar, C.R. (1998) ‘Prevalence of mental and behavioural disorders in India: a meta-analysis’, Indian Journal of Psychiatry 40: 149–57.
Rodgers, J. and Lipscombe, J. (2005) ‘The nature and extent of help given to women with intellectual disabilities to manage menstruation’, Journal of Intellectual and Developmental Disability 30(1): 45–52.
Sapkota, D., Sharma, D., Pokharel, H.P., Budhathoki, S.S., Khanal, V.K. (2013) ‘Knowledge and practices regarding menstruation among school going adolescents of rural Nepal’, Journal of Kathmandu Medical College 2(3): 122–8 <http://dx.doi.org/10.3126/jkmc.v2i3.9962>.
Shastri, P.C. (2008) ‘Future perspective of planning child guidance services in India’, Indian Journal of Psychiatry 50: 241–3 <http://dx.doi.org/10.4103/0019-5545.44744>.
Sreeja, I., Sandhya, G., Rakesh, L. and Singh, M. (2008) ‘Comparison of burden between family caregivers of patients having schizophrenia and epilepsy’, The Internet Journal of Epidemiology 6: 2.
Swenson, I. and Havens, B. (1987) ‘Menarche and menstruation: a review of the literature’, Journal of Community Health Nursing 4(4): 199–210.
Tilley, E., Walmsley, J., Earle, S. and Atkinson, D. (2012) ‘The silence is roaring: sterilization, reproductive rights and women with intellectual disabilities’, Disability and Society 27(3): 413–26 <http://dx.doi.org/10.1080/09687599.2012.654991>.
Wikler, L. (1981) ‘Chronic stresses of families of mentally retarded children’, Family Relations 30(2): 281–8.
World Health Organization (WHO) (1985) Mental Retardation: Meeting the Challenge [pdf], WHO offset publication no. 86, Geneva: WHO <http://apps.who.int/iris/bitstream/10665/39691/1/WHO_OFFSET_86.pdf>
Alur, M. (2001) ‘Some cultural and moral implications of inclusive education in India: a personal view’, Journal of Moral Education 30(3): 287–92 <http://dx.doi.org/10.1080/03057240120077291>.
Bhartiya, A. (2013) ‘Menstruation, religion and society’, International Journal of Social Science and Humanity 3(6): 523–7 <http://dx.doi.org/10.7763/IJSSH.2013.V3.296>.
Chou, Y.-C. and Lu, Z.-Y.J. (2012) ‘Caring for a daughter with intellectual disabilities in managing menstruation: a mother’s perspective’, Journal of Intellectual and Developmental Disability 37(1): 1–10 <http://dx.doi.org/10.3109/13668250.2011.651615>.
Daley, T.C. (2004) ‘From symptom recognition to diagnosis: children with autism in urban India’, Social Science & Medicine 58(7): 1323–35 <https://doi.org/10.1016/S0277-9536(03)00330-7>.
Datta, K. (2017) ‘Noida schoolgirls learn about menstrual hygiene’, Hindustan Times [online], 1 April <www.hindustantimes.com/education/noida-schoolgirls-learn-about-menstrual-hygiene/story-8ve9CqSS7AyCeUFTVCYPUJ.html> [accessed 14 August 2017].
Diekema, D.S. (2003) ‘Involuntary sterilization of persons with mental retardation: an ethical analysis’, Mental Retardation and Developmental Disabilities 9(1): 21–6 <http://dx.doi.org/10.1002/mrdd.10053>.
Edwardraj, S., Mumtaj, K., Prasad, J.H., Kuruvilla, A. and Jacob, K.S. (2010) ‘Perceptions about intellectual disability: a qualitative study from Vellore, South India’, Journal of Intellectual Disability Research 54(8): 736–48 <http://dx.doi.org/10.1111/j.1365-2788.2010.01301.x> [accessed 14 August 2017].
Ellis, B.J., Giudice, M., Dishion, T.J., Figueredo, A.J., Gray, P., Griskevicius, V., Hawley, P.H., Jacobs, W.J., James, J., Volk, A.A. and Wilson, D.S. (2012) ‘The evolutionary basis of risky adolescent behavior: implications for science, policy, and practice’, Development Psychology 48(3): 598–623 <http://dx.doi.org/10.1037/a0026220>.
Garg, S. and Anand, T. (2015) ‘Menstruation related myths in India: strategies for combating it’, Journal of Family Medicine and Primary Care 4(2): 184–6 <http://dx.doi.org/10.4103/2249-4863.154627>.
Griffin, J., Carlson, G., Taylor, M. and Wilson, J. (1994) ‘Menstrual management and intellectual disability: new perspectives’, Occupational Therapy International 1: 141–57 <http://dx.doi.org/10.1002/oti.6150010303>.
Gomez, M.T., Carlson, G.M. and Dooren, K.V. (2012) ‘Practical approaches to supporting young women with intellectual disabilities and high support needs with their menstruation’, Health Care for Women International 33(8): 678–94 <http://dx.doi.org/10.1080/07399332.2012.684812>.
Government of India (2003) ‘Survey of disabled persons in India: NSS 58th round (July-Dec 2002)’ [database], National Sample Survey Office <www.ilo.org/surveydata/index.php/catalog/196/study-description> [accessed 21 November 2014].
Government of India (2015) Menstrual Hygiene Management: National Guidelines [pdf], Ministry of Drinking Water and Sanitation <www.mdws.gov.in/sites/default/files/Menstrual%20Hygiene%20Management%20-%20Guidelines.pdf> [accessed 1 August 2017].
Grover, S.R. (2002) ‘Menstrual and contraceptive management in women with an intellectual disability’, Medicine and the Community 176: 108–10.
Gupta, A. and Singhal, N. (2005) ‘Psychosocial support for families of children with autism’, Asia Pacific Disability Rehabilitation Journal 16(2): 62–83.
Hindustan Times (2016) ‘Laws on rights of persons with disabilities notified’, 30 December 2016 [online] <www.hindustantimes.com/india-news/law-on-rights-of-persons-with-disabilities-notified/story-E0Vpnt3r1v8sXNkxPdhvkL.html> [accessed 13 June 2017].
Holness, W. (2013) ‘Informed consent for sterilisation of women and girls with disabilities in the light of the Convention on the Rights of Persons with Disabilities’, Agenda: Empowering Women for Gender Equity 27(4): 35–54.
Kabra, M. and Gulati, S. (2003) ‘Mental retardation’, The Indian Journal of Pediatrics 70: 153–8.
Kamaruddin, K. and Mamat, N. (2015) ‘Stress among the parents of children with learning disabilities: a demographical analysis’, International Journal of Humanities Social Sciences and Education 2(9): 194–200.
Kishore, M.T. (2011) ‘Disability impact and coping in mothers of children with intellectual disabilities and multiple disabilities’, Journal of Intellectual Disabilities 15(4): 241–51.
Klett, L.S. and Turan, Y. (2012) ‘Generalized effects of social stories with task analysis for teaching menstrual care to three young girls with autism’, Sexuality and Disability 30(3): 319–36 <http://dx.doi.org/10.1007/s11195-011-9244-2>.
Lim, F., Downs, J., Li, J., Bao, X. and Leonard, H. (2013) ‘Caring for a child with severe intellectual disability in China: the example of Rett syndrome’, Disability and Rehabilitation 35(4): 343–51 <http://dx.doi.org/10.3109/09638288.2012.715720>.
Lin, L.P., Lin, P.Y., Hsu, S.W., Lin, J.D., Lai, C.I., Chien, W.C. and Lin, F.G. (2011) ‘Caregiver awareness of reproductive health issues for women with intellectual disabilities’, BMC Public Health 11: 1471–2458 <http://dx.doi.org/10.1186/1471-2458-11-59>.
Park, H.R. (2013) Menstrual Support for Females with Developmental Disabilities: Survey and Interview of Parents or Caretakers [pdf], PhD dissertation, University of Kansas <https://kuscholarworks.ku.edu/bitstream/handle/1808/15062/Park_ku_0099D_13173_DATA_1.pdf> [accessed 22 September 2017].
Patton, G.C., Hibbert, M.E., Carlin, J., Shao, Q., Rosier, M., Caust, J. and Bowes, G. (1996) ‘Menarche and the onset of depression and anxiety in Victoria, Australia’, Journal of Epidemiology and Community Health 50: 661–6.
Peters, S. (2007) ‘“Education for all?” A historical analysis of international inclusive education policy and individuals with disabilities’, Journal of Disability Policy Studies 18(2): 98–108.
Quint, E.H. (2008) ‘Menstrual issues in adolescents with physical and developmental disabilities’, Annals of the New York Academy of Sciences 1135: 230–6 <http://dx.doi.org/10.1196/annals.1429.020>.
Reddy, V.M. and Chandrashekar, C.R. (1998) ‘Prevalence of mental and behavioural disorders in India: a meta-analysis’, Indian Journal of Psychiatry 40: 149–57.
Rodgers, J. and Lipscombe, J. (2005) ‘The nature and extent of help given to women with intellectual disabilities to manage menstruation’, Journal of Intellectual and Developmental Disability 30(1): 45–52.
Sapkota, D., Sharma, D., Pokharel, H.P., Budhathoki, S.S., Khanal, V.K. (2013) ‘Knowledge and practices regarding menstruation among school going adolescents of rural Nepal’, Journal of Kathmandu Medical College 2(3): 122–8 <http://dx.doi.org/10.3126/jkmc.v2i3.9962>.
Shastri, P.C. (2008) ‘Future perspective of planning child guidance services in India’, Indian Journal of Psychiatry 50: 241–3 <http://dx.doi.org/10.4103/0019-5545.44744>.
Sreeja, I., Sandhya, G., Rakesh, L. and Singh, M. (2008) ‘Comparison of burden between family caregivers of patients having schizophrenia and epilepsy’, The Internet Journal of Epidemiology 6: 2.
Swenson, I. and Havens, B. (1987) ‘Menarche and menstruation: a review of the literature’, Journal of Community Health Nursing 4(4): 199–210.
Tilley, E., Walmsley, J., Earle, S. and Atkinson, D. (2012) ‘The silence is roaring: sterilization, reproductive rights and women with intellectual disabilities’, Disability and Society 27(3): 413–26 <http://dx.doi.org/10.1080/09687599.2012.654991>.
Wikler, L. (1981) ‘Chronic stresses of families of mentally retarded children’, Family Relations 30(2): 281–8.
World Health Organization (WHO) (1985) Mental Retardation: Meeting the Challenge [pdf], WHO offset publication no. 86, Geneva: WHO <http://apps.who.int/iris/bitstream/10665/39691/1/WHO_OFFSET_86.pdf>
The impact of an applied menstrual self-care education program given to adolescents with intellectual disabilities and their mothers on their knowledge, skills, and anxiety levels
Kaçan, Havva
Birol, Zeynep
(2024) P.1
https://doi.org/10.1080/20473869.2024.2411505 [Citations: 0]Health and Wellbeing of India's Young People
What Do We Know About Sexual and Reproductive Health of Adolescents and Youth in India: A Synthesis of Literature
Sivakami, M.
Rai, Saurabh
2019
https://doi.org/10.1007/978-981-13-6593-5_5 [Citations: 3]What's the bleeding problem: menstrual health and living with a disability
Phillips-Howard, Penelope A.
The Lancet Regional Health - Western Pacific, Vol. 19 (2022), Iss. P.100349
https://doi.org/10.1016/j.lanwpc.2021.100349 [Citations: 0]Qualitative study exploring the barriers to menstrual hygiene management faced by adolescents and young people with a disability, and their carers in the Kavrepalanchok district, Nepal
Wilbur, Jane
Kayastha, Shubha
Mahon, Thérèse
Torondel, Belen
Hameed, Shaffa
Sigdel, Anita
Gyawali, Amrita
Kuper, Hannah
BMC Public Health, Vol. 21 (2021), Iss. 1
https://doi.org/10.1186/s12889-021-10439-y [Citations: 32]Hysterectomy for the Management of Menstrual Hygiene in Women With Intellectual Disability. A Systematic Review Focusing on Standards and Ethical Considerations for Developing Countries
Márquez-González, Horacio
Valdez-Martinez, Edith
Bedolla, Miguel
Frontiers in Public Health, Vol. 6 (2018), Iss.
https://doi.org/10.3389/fpubh.2018.00338 [Citations: 9]Are Nepal’s water, sanitation and hygiene and menstrual hygiene policies and supporting documents inclusive of disability? A policy analysis
Wilbur, Jane
Scherer, Nathaniel
Mactaggart, Islay
Shrestha, Govind
Mahon, Thérèse
Torondel, Belen
Hameed, Shaffa
Kuper, Hannah
International Journal for Equity in Health, Vol. 20 (2021), Iss. 1
https://doi.org/10.1186/s12939-021-01463-w [Citations: 14]Awareness about Menstrual Hygiene Management among Visually Impaired Adolescent Girls
Singh, Smriti
Agarwal, Shalini
(2023) P.211
https://doi.org/10.18311/jeoh/2023/34656 [Citations: 0]Menstrual Leave in India: Is It Progressive or Regressive?
Mishra, Udaya S.
(2024)
https://doi.org/10.1007/s40609-024-00356-4 [Citations: 0]‘Flower of the body’: menstrual experiences and needs of young adolescent women with cerebral palsy in Bangladesh, and their mothers providing menstrual support
Power, R.
Wiley, K.
Muhit, M.
Heanoy, E.
Karim, T.
Badawi, N.
Khandaker, G.
BMC Women's Health, Vol. 20 (2020), Iss. 1
https://doi.org/10.1186/s12905-020-01032-3 [Citations: 11]Perspectives on prior preparation for menstrual experience from women and female health workers in Malawi
Mwalabu, Gertrude
Mbewe, Safari
Namathanga, Annie
Masese, Rodney
Kabondo, Charity
Katuya, Leah
Petrucka, Pammla
Mapulanga, Patrick
Women's Health, Vol. 20 (2024), Iss.
https://doi.org/10.1177/17455057241286245 [Citations: 0]Imparting genital hygiene skills to adolescents with intellectual disabilities attending a special education Centre: a quasi-experimental study on effect of short education
Altundağ, Sebahat
International Journal of Developmental Disabilities, Vol. 70 (2024), Iss. 1 P.127
https://doi.org/10.1080/20473869.2022.2070421 [Citations: 3]Menstrual Health Experiences of People with Intellectual Disabilities and Their Caregivers during Vanuatu’s Humanitarian Responses: A Qualitative Study
Wilbur, Jane
Poilapa, Relvie
Morrison, Chloe
International Journal of Environmental Research and Public Health, Vol. 19 (2022), Iss. 21 P.14540
https://doi.org/10.3390/ijerph192114540 [Citations: 4]A qualitative cross-sectional study exploring the implementation of disability-inclusive WASH policy commitments in Svay Reing and Kampong Chhnang Provinces, Cambodia
Wilbur, Jane
Pheng, Pharozin
Has, Rithysangharith
Nguon, Sophak Kanika
Banks, Lena Morgon
Huggett, Chelsea
Scherer, Nathaniel
Biran, Adam
Frontiers in Water, Vol. 4 (2022), Iss.
https://doi.org/10.3389/frwa.2022.963405 [Citations: 4]The inclusion of disability within efforts to address menstrual health during humanitarian emergencies: A systematized review
Wilbur, Jane
Clemens, Felicity
Sweet, Elisabeth
Banks, Lena Morgon
Morrison, Chloe
Frontiers in Water, Vol. 4 (2022), Iss.
https://doi.org/10.3389/frwa.2022.983789 [Citations: 4]Qualitative Focus Groups with Professionals of Special Education and Parents of Young Females with Intellectual Disability Exploring Experiences with Menstrual Hygiene Management and the Trigger for the Non-Therapeutic Hysterectomy in Mexico
Flores-Medina, Maria del Rosario
Valdez-Martinez, Edith
Márquez-González, Horacio
Healthcare, Vol. 10 (2022), Iss. 9 P.1690
https://doi.org/10.3390/healthcare10091690 [Citations: 0]The Right to Sexuality, Reproductive Health, and Found a Family for People with Intellectual Disability: A Systematic Review
Pérez-Curiel, Patricia
Vicente, Eva
Morán, M. Lucía
Gómez, Laura E.
International Journal of Environmental Research and Public Health, Vol. 20 (2023), Iss. 2 P.1587
https://doi.org/10.3390/ijerph20021587 [Citations: 12]- A call to action: organizational, professional, and personal change for gender transformative WASH programming
- Providing municipal faecal sludge management services: lessons from Bangladesh
- Menstrual hygiene management: education and empowerment for girls?
- Webwatch
- Transgender-inclusive sanitation: insights from South Asia
Browse our other journals
