Challenges in Providing Reproductive and Gynecologic Care to Women With Intellectual Disabilities: A Review of Existing Literature
-
Prakriti Singh Shrestha
,
Angela Ishak
,
Upasana Maskey
,
Purushottam Neupane
,
Sarosh Sarwar
,
Shreeya Desai
,
Faris Naffa'
,
Claudia Maria Cuevas Lou
,
Miguel Diaz-Miret
Abstract
Objective: Our review aims to focus on identifying challenges faced by intellectually disabled women (IDW) in receiving gynecological and reproductive care and also highlights evidence based strategies to overcome those challenges.
Materials and methods: We conducted a literature review discussing challenges faced by IDW in obtaining healthcare services by thorough search on various electronic databases (PubMed, Google Scholar, and Scopus) starting from 2000 to 28 August 2021 excluding all non-english articles, reviews, editorials and letters to editor. The keywords used for search were “reproductive care”, “gynecologic care”, “intellectual disability”, “mental handicap”, and "mental retardation".
Results: The existing literature review showed that IDW have difficulty maintaining menstrual hygiene and lack knowledge regarding contraception use and sexual health resulting in violations of their reproductive rights. Sexually transmitted diseases and cervical cancer are common among IDW due to their vulnerability to sexual abuse. Nulliparity in IDW increases their suspectibility to even breast cancer. Moreover, they face problems with sexually transmitted infection (STI) and cancer screening due to physical barriers for assessment, low socio-economic status, physician-patient communication issues and deficit in skilled providers. Short acting sedatives such as ketamine or midazolam can be used to overcome challenges faced with gynecological and obstetric examination. Finally forced sterilization and institutionalization has been a habitual practice as menstrual hygiene and pregnancy in IDW raise concerns on psychosocial challenges along with associated obstetric complications.
Conclusion: Reproductive and sexual health education including contraception use can be provided by using evidence based strategies involving use of pictures, animations and models by adequately trained healthcare providers including midwives. Further research involving IDW is needed to allow state-wise laws and policies to be created to mitigate the challenges and improve health outcomes in this population.
1. Wilkinson JE, Cerreto MC. Primary care for women with intellectual disabilities. J Am Board Fam Med 2008; 21: 215-22.
2. Marrus N, Hall L. Intellectual Disability and Language Disorder. Child Adolesc Psychiatr Clin N Am 2017; 26: 539-54.
3. Boat TF, Wu JT. Mental Disorders and Disabilities among Low-Income Children. Washington, DC: National Academies Press, 2015.
4. Krahn GL, Hammond L, Turner A. A cascade of disparities: health and health care access for people with intellectual disabilities. Ment Retard Dev Disabil Res Rev 2006; 12: 70-82.
5. Taggart L, McLaughlin D, Quinn B, McFarlane C. Listening to people with intellectual disabilities who misuse alcohol and drugs. Health Soc Care Community 2007; 15: 360-8.
6. Slayter EM. Disparities in access to substance abuse treatment among people with intellectual disabilities and serious mental illness. Health Soc Work 2010; 35: 49-59.
7. Pradhan A, Slade GD, Spencer AJ. Factors influencing caries experience among adults with physical and intellectual disabilities. Community Dent Oral Epidemiol 2009; 37: 143-54.
8. Evans E, Howlett S, Kremser T, Simpson J, Kayess R, Trollor J. Service development for intellectual disability mental health: a human rights approach. J Intellect Disabil Res 2012; 56: 1098-109.
9. Roy A, Roy A, Roy M. The human rights of women with intellectual disability. J R Soc Med 2012; 105: 384-9.
10. Agaronnik N, Pendo E, Lagu T, DeJong C, Perez-Caraballo A, Iezzoni L. Ensuring the reproductive rights of women with intellectual disability. Journal of Intellectual & Developmental Disability 2020; 45: 365-76.
11. Tilley E, Walmsley J, Earle S, Atkinson D. ‘The silence is roaring’: sterilization, reproductive rights and women with intellectual disabilities. Disability & Society 2012; 27: 413-26.
12. Greenwood NW, Wilkinson J. Sexual and reproductive health care for women with intellectual disabilities: a primary care perspective. Int J Family Med 2013; 2013: 642472.
13. Rubenstein E, Ehrenthal DB, Mallinson DC, Bishop L, Kuo HH, Durkin M. Pregnancy complications and maternal birth outcomes in women with intellectual and developmental disabilities in Wisconsin Medicaid. PLoS One 2020; 15: e0241298.
14. Xie E, Gemmill M. Exploring the prenatal experience of women with intellectual and developmental disabilities: In a southeastern Ontario family health team. Can Fam Physician 2018; 64: S70-S5.
15. Mueller BA, Crane D, Doody DR, Stuart SN, Schiff MA. Pregnancy course, infant outcomes, rehospitalization, and mortality among women with intellectual disability. Disabil Health J 2019; 12: 452-9.
16. Brown HK, Ray JG, Liu N, Lunsky Y, Vigod SN. Rapid repeat pregnancy among women with intellectual and developmental disabilities: a population-based cohort study. CMAJ 2018; 190: E949-E56.
17. van Schrojenstein Lantman-de Valk HM, Rook F, Maaskant MA.The use of contraception by women with intellectual disabilities. J Intellect Disabil Res 2011; 55: 434-40.
18. Servais L, Jacques D, Leach R, Conod L, Hoyois P, Dan B, Roussaux JP. Contraception of women with intellectual disability: prevalence and determinants. J Intellect Disabil Res 2002; 46: 108-19.
19. McCarthy M. Contraception and Women with Intellectual Disabilities. Journal of Applied Research in Intellectual Disabilities 2009; 22: 363-9.
20. Gomez MT, Carlson GM, Van Dooren K. Practical approaches to supporting young women with intellectual disabilities and high support needs with their menstruation. Health Care Women Int 2012; 33: 678-94.
21. Anderson P, Kitchin R. Disability, space and sexuality: access to family planning services. Soc Sci Med 2000; 51: 1163-73.
22. Gill M. Rethinking Sexual Abuse, Questions of Consent, and Intellectual Disability. Sexuality Research and Social Policy 2010; 7: 201-13.
23. Pownall JD, Jahoda A, Hastings RP. Sexuality and sex education of adolescents with intellectual disability: mothers' attitudes, experiences, and support needs. Intellect Dev Disabil 2012; 50: 140-54.
24. Swango-Wilson A. Meaningful Sex Education Programs for Individuals with Intellectual/Developmental Disabilities.Sexuality and Disability 2011; 29: 113-8.
25. Anderson P, Kitchin R. Disability, space and sexuality: access to family planning services. Soc Sci Med 2000; 51: 1163-73.
26. Jaffe JS, Timell AM, Eisenberg MS, Chambers JT. Low prevalence of abnormal cervical cytology in an institutionalized population with intellectual disability. J Intellect Disabil Res 2002; 46: 569-74.
27. Tyler CV, Zyzanski SJ, Panaite V, Council L. Nursing perspectives on cancer screening in adults with intellectual and other developmental disabilities. Intellect Dev Disabil 2010; 48: 271-7.
28. Wacker J, Macy R, Barger E, Parish S. Sexual assault prevention for women with intellectual disabilities: a critical review of the evidence. Intellect Dev Disabil 2009; 47: 249-62.
29. Parish SL, Saville AW. Women with cognitive limitations living in the community: evidence of disability-based disparities in health care. Ment Retard 2006; 44: 249-59.
30. Lewis MA, Lewis CE, Leake B, King BH, Lindemann R. The quality of health care for adults with developmental disabilities. Public Health Rep 2002; 117: 174-84.
31. Parish SL, Swaine JG, Son E, Luken K. Determinants of cervical cancer screening among women with intellectual disabilities: evidence from medical records. Public Health Rep 2013; 128: 519-26.
32. Shin D, Yu J, Cho J, Lee SK, Jung JH, Han K, et al. Breast cancer screening disparities between women with and without disabilities: A national database study in South Korea. Cancer 2020; 126: 1522-9.
33. Siu AL; U.S. Preventive Services Task Force. Screening for Breast Cancer: U.S. Preventive Services Task Force Recommendation Statement. Ann Intern Med 2016;164:279-96.
34. Davies N, Duff M. Breast cancer screening for older women with intellectual disability living in community group homes. J Intellect Disabil Res 2001; 45: 253-7.
35. McCarthy EP, Ngo LH, Roetzheim RG, Chirikos TN, Li D, Drews RE, et al. Disparities in breast cancer treatment and survival for women with disabilities. Ann Intern Med 2006; 145: 637-45.
36. Lezzoni LI, Kurtz SG, Rao SR. Trends in mammography over time for women with and without chronic disability. J Womens Health (Larchmt) 2015; 24: 593-601.
37. Fouquier KF, Camune BD. Meeting the Reproductive Needs of Female Adolescents With Neurodevelopmental Disabilities. J Obstet Gynecol Neonatal Nurs 2015; 44: 553-63.
38. Altundağ S, Çalbayram NÇ. Teaching menstrual care skills to intellectually disabled female students. J Clin Nurs 2016; 25: 1962-8.
39. Horner-Johnson W, Biel FM, Caughey AB, Darney BG. Differences in Prenatal Care by Presence and Type of Maternal Disability. Am J Prev Med 2019; 56: 376-82.
40. Höglund B, Lindgren P, Larsson M. Midwives' knowledge of, attitudes towards and experiences of caring for women with intellectual disability during pregnancy and childbirth: a cross-sectional study in Sweden. Midwifery 2013; 29: 950-5.
41. Servais L.Sexual health care in persons with intellectual disabilities. Ment Retard Dev Disabil Res Rev 2006; 12: 48-56.
42. Broughton S, Thomson K. Women with learning disabilities: risk behaviours and experiences of the cervical smear test. J Adv Nurs 2000; 32: 905-12.
43. Wright TC Jr, Denny L, Kuhn L, Pollack A, Lorincz A. HPV DNA testing of self-collected vaginal samples compared with cytologic screening to detect cervical cancer. JAMA 2000; 283: 81-6.
44. McCarthy M. Women with intellectual disability: Their sexual lives in the 21st century. Journal of Intellectual & Developmental Disability 2014; 39: 124–31.
45. Eastgate G, Van Driel ML, Lennox NG, Scheermeyer E. Women with intellectual disabilities--a study of sexuality, sexual abuse and protection skills. Aust Fam Physician 2011; 40: 226-30.
46. Rowen TS, Stein S, Tepper M. Sexual health care for people with physical disabilities. J Sex Med 2015; 12: 584-9.
47. Wickström M, Larsson M, Höglund B. How can sexual and reproductive health and rights be enhanced for young people with intellectual disability? Focus group interviews with staff in Sweden. Reprod Health 2020; 17: 86.
48. Verdugo MA, Navas P, Gómez LE, Schalock RL. The concept of quality of life and its role in enhancing human rights in the field of intellectual disability.J Intellect Disabil Res 2012; 56: 1036-45.
49. Lee K, Devine A, Marco MJ, Zayas J, Gill-Atkinson L, Vaughan C. Sexual and reproductive health services for women with disability: a qualitative study with service providers in the Philippines. BMC Womens Health 2015; 15: 87.
50. Höglund B, Larsson M. Ethical dilemmas and legal aspects in contraceptive counselling for women with intellectual disability-Focus group interviews among midwives in Sweden. Journal of Applied Research in Intellectual Disabilities 2019; 32: 1558-66.
2. Marrus N, Hall L. Intellectual Disability and Language Disorder. Child Adolesc Psychiatr Clin N Am 2017; 26: 539-54.
3. Boat TF, Wu JT. Mental Disorders and Disabilities among Low-Income Children. Washington, DC: National Academies Press, 2015.
4. Krahn GL, Hammond L, Turner A. A cascade of disparities: health and health care access for people with intellectual disabilities. Ment Retard Dev Disabil Res Rev 2006; 12: 70-82.
5. Taggart L, McLaughlin D, Quinn B, McFarlane C. Listening to people with intellectual disabilities who misuse alcohol and drugs. Health Soc Care Community 2007; 15: 360-8.
6. Slayter EM. Disparities in access to substance abuse treatment among people with intellectual disabilities and serious mental illness. Health Soc Work 2010; 35: 49-59.
7. Pradhan A, Slade GD, Spencer AJ. Factors influencing caries experience among adults with physical and intellectual disabilities. Community Dent Oral Epidemiol 2009; 37: 143-54.
8. Evans E, Howlett S, Kremser T, Simpson J, Kayess R, Trollor J. Service development for intellectual disability mental health: a human rights approach. J Intellect Disabil Res 2012; 56: 1098-109.
9. Roy A, Roy A, Roy M. The human rights of women with intellectual disability. J R Soc Med 2012; 105: 384-9.
10. Agaronnik N, Pendo E, Lagu T, DeJong C, Perez-Caraballo A, Iezzoni L. Ensuring the reproductive rights of women with intellectual disability. Journal of Intellectual & Developmental Disability 2020; 45: 365-76.
11. Tilley E, Walmsley J, Earle S, Atkinson D. ‘The silence is roaring’: sterilization, reproductive rights and women with intellectual disabilities. Disability & Society 2012; 27: 413-26.
12. Greenwood NW, Wilkinson J. Sexual and reproductive health care for women with intellectual disabilities: a primary care perspective. Int J Family Med 2013; 2013: 642472.
13. Rubenstein E, Ehrenthal DB, Mallinson DC, Bishop L, Kuo HH, Durkin M. Pregnancy complications and maternal birth outcomes in women with intellectual and developmental disabilities in Wisconsin Medicaid. PLoS One 2020; 15: e0241298.
14. Xie E, Gemmill M. Exploring the prenatal experience of women with intellectual and developmental disabilities: In a southeastern Ontario family health team. Can Fam Physician 2018; 64: S70-S5.
15. Mueller BA, Crane D, Doody DR, Stuart SN, Schiff MA. Pregnancy course, infant outcomes, rehospitalization, and mortality among women with intellectual disability. Disabil Health J 2019; 12: 452-9.
16. Brown HK, Ray JG, Liu N, Lunsky Y, Vigod SN. Rapid repeat pregnancy among women with intellectual and developmental disabilities: a population-based cohort study. CMAJ 2018; 190: E949-E56.
17. van Schrojenstein Lantman-de Valk HM, Rook F, Maaskant MA.The use of contraception by women with intellectual disabilities. J Intellect Disabil Res 2011; 55: 434-40.
18. Servais L, Jacques D, Leach R, Conod L, Hoyois P, Dan B, Roussaux JP. Contraception of women with intellectual disability: prevalence and determinants. J Intellect Disabil Res 2002; 46: 108-19.
19. McCarthy M. Contraception and Women with Intellectual Disabilities. Journal of Applied Research in Intellectual Disabilities 2009; 22: 363-9.
20. Gomez MT, Carlson GM, Van Dooren K. Practical approaches to supporting young women with intellectual disabilities and high support needs with their menstruation. Health Care Women Int 2012; 33: 678-94.
21. Anderson P, Kitchin R. Disability, space and sexuality: access to family planning services. Soc Sci Med 2000; 51: 1163-73.
22. Gill M. Rethinking Sexual Abuse, Questions of Consent, and Intellectual Disability. Sexuality Research and Social Policy 2010; 7: 201-13.
23. Pownall JD, Jahoda A, Hastings RP. Sexuality and sex education of adolescents with intellectual disability: mothers' attitudes, experiences, and support needs. Intellect Dev Disabil 2012; 50: 140-54.
24. Swango-Wilson A. Meaningful Sex Education Programs for Individuals with Intellectual/Developmental Disabilities.Sexuality and Disability 2011; 29: 113-8.
25. Anderson P, Kitchin R. Disability, space and sexuality: access to family planning services. Soc Sci Med 2000; 51: 1163-73.
26. Jaffe JS, Timell AM, Eisenberg MS, Chambers JT. Low prevalence of abnormal cervical cytology in an institutionalized population with intellectual disability. J Intellect Disabil Res 2002; 46: 569-74.
27. Tyler CV, Zyzanski SJ, Panaite V, Council L. Nursing perspectives on cancer screening in adults with intellectual and other developmental disabilities. Intellect Dev Disabil 2010; 48: 271-7.
28. Wacker J, Macy R, Barger E, Parish S. Sexual assault prevention for women with intellectual disabilities: a critical review of the evidence. Intellect Dev Disabil 2009; 47: 249-62.
29. Parish SL, Saville AW. Women with cognitive limitations living in the community: evidence of disability-based disparities in health care. Ment Retard 2006; 44: 249-59.
30. Lewis MA, Lewis CE, Leake B, King BH, Lindemann R. The quality of health care for adults with developmental disabilities. Public Health Rep 2002; 117: 174-84.
31. Parish SL, Swaine JG, Son E, Luken K. Determinants of cervical cancer screening among women with intellectual disabilities: evidence from medical records. Public Health Rep 2013; 128: 519-26.
32. Shin D, Yu J, Cho J, Lee SK, Jung JH, Han K, et al. Breast cancer screening disparities between women with and without disabilities: A national database study in South Korea. Cancer 2020; 126: 1522-9.
33. Siu AL; U.S. Preventive Services Task Force. Screening for Breast Cancer: U.S. Preventive Services Task Force Recommendation Statement. Ann Intern Med 2016;164:279-96.
34. Davies N, Duff M. Breast cancer screening for older women with intellectual disability living in community group homes. J Intellect Disabil Res 2001; 45: 253-7.
35. McCarthy EP, Ngo LH, Roetzheim RG, Chirikos TN, Li D, Drews RE, et al. Disparities in breast cancer treatment and survival for women with disabilities. Ann Intern Med 2006; 145: 637-45.
36. Lezzoni LI, Kurtz SG, Rao SR. Trends in mammography over time for women with and without chronic disability. J Womens Health (Larchmt) 2015; 24: 593-601.
37. Fouquier KF, Camune BD. Meeting the Reproductive Needs of Female Adolescents With Neurodevelopmental Disabilities. J Obstet Gynecol Neonatal Nurs 2015; 44: 553-63.
38. Altundağ S, Çalbayram NÇ. Teaching menstrual care skills to intellectually disabled female students. J Clin Nurs 2016; 25: 1962-8.
39. Horner-Johnson W, Biel FM, Caughey AB, Darney BG. Differences in Prenatal Care by Presence and Type of Maternal Disability. Am J Prev Med 2019; 56: 376-82.
40. Höglund B, Lindgren P, Larsson M. Midwives' knowledge of, attitudes towards and experiences of caring for women with intellectual disability during pregnancy and childbirth: a cross-sectional study in Sweden. Midwifery 2013; 29: 950-5.
41. Servais L.Sexual health care in persons with intellectual disabilities. Ment Retard Dev Disabil Res Rev 2006; 12: 48-56.
42. Broughton S, Thomson K. Women with learning disabilities: risk behaviours and experiences of the cervical smear test. J Adv Nurs 2000; 32: 905-12.
43. Wright TC Jr, Denny L, Kuhn L, Pollack A, Lorincz A. HPV DNA testing of self-collected vaginal samples compared with cytologic screening to detect cervical cancer. JAMA 2000; 283: 81-6.
44. McCarthy M. Women with intellectual disability: Their sexual lives in the 21st century. Journal of Intellectual & Developmental Disability 2014; 39: 124–31.
45. Eastgate G, Van Driel ML, Lennox NG, Scheermeyer E. Women with intellectual disabilities--a study of sexuality, sexual abuse and protection skills. Aust Fam Physician 2011; 40: 226-30.
46. Rowen TS, Stein S, Tepper M. Sexual health care for people with physical disabilities. J Sex Med 2015; 12: 584-9.
47. Wickström M, Larsson M, Höglund B. How can sexual and reproductive health and rights be enhanced for young people with intellectual disability? Focus group interviews with staff in Sweden. Reprod Health 2020; 17: 86.
48. Verdugo MA, Navas P, Gómez LE, Schalock RL. The concept of quality of life and its role in enhancing human rights in the field of intellectual disability.J Intellect Disabil Res 2012; 56: 1036-45.
49. Lee K, Devine A, Marco MJ, Zayas J, Gill-Atkinson L, Vaughan C. Sexual and reproductive health services for women with disability: a qualitative study with service providers in the Philippines. BMC Womens Health 2015; 15: 87.
50. Höglund B, Larsson M. Ethical dilemmas and legal aspects in contraceptive counselling for women with intellectual disability-Focus group interviews among midwives in Sweden. Journal of Applied Research in Intellectual Disabilities 2019; 32: 1558-66.
| Files | ||
| Issue | Vol 16, No 1 (March 2022) | |
| Section | Review Articles | |
| DOI | https://doi.org/10.18502/jfrh.v16i1.8589 | |
| Keywords | ||
| Intellectual Disability Women Contraception Reproductive Health | ||
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How to Cite
1.
Singh Shrestha P, Ishak A, Maskey U, Neupane P, Sarwar S, Desai S, Naffa’ F, Cuevas Lou C, Diaz-Miret M. Challenges in Providing Reproductive and Gynecologic Care to Women With Intellectual Disabilities: A Review of Existing Literature. J Family Reprod Health. 2022;16(1):9-15.
