Matern Child Health JMaternal and Child Health Journal1092-78751573-6628Springer USBoston16850276159214511110.1007/s10995-006-0111-1Original PaperThe Importance of Preconception Care for Women With DisabilitiesThierryJoAnn M.PhD, MSW
jxt4@cdc.gov
Centers for Disease Control and Prevention, 1600 Clifton Road, Mail Stop E-88, Atlanta, GA 30333 USA
19720069200610Suppl 1175176181220052542006© Springer Science+Business Media, Inc. 2006KeywordsDisabilityPregnancyWomen's Healthissue-copyright-statement© Springer Science+Business Media, LLC 2006

Overall estimates of the number of women with disabilities in the United States range from 16.8 to 28.6 million, or approximately one in every five women [13]. A large percentage of these women are in their reproductive years, and they often encounter greater obstacles to receiving health care than women without disabilities [4]. Some disabling conditions, such as spinal cord injury (SCI) and multiple sclerosis (MS), have low prevalence rates but are more common in the reproductive age group. Such conditions are often associated with a greater severity of disability and increased need for specialized services, including prenatal care [5]. Health care professionals need to be aware of the reproductive health care issues facing women with disabilities and take every opportunity to address them.

Sexuality and reproductive health issues have received inadequate attention for women with disabilities. Many women with disabilities desire children and are capable of conceiving, but face considerable pressure not to reproduce [6, 7]. Although a growing number of women with disabilities are becoming pregnant, anecdotal evidence suggests that many of these women encounter negative attitudes towards their pregnancies and report difficulty receiving comprehensive prenatal care [6].

Women with disabilities who become pregnant face similar issues and concerns as pregnant women without disabilities. Although many pregnant women experience problems with weight gain, fatigue, fluid retention, bladder dysfunction, and urinary tract infections, these problems may be more serious in women with disabilities [8]. All women are concerned about the health of their unborn child. Like other women, women with disabilities express concern about the possibility of giving birth to a child with disabilities and may seek genetic counseling. On the other hand, not all disabled women embrace the idea of genetic testing. To these women the idea of genetic counseling raises psychosocial issues that may be difficult for them to consider [6].

Some disabling conditions pose unique problems during or after pregnancy. Complications associated with specific conditions, such as systemic lupus erythematosus (SLE), SCI, or MS, can affect pregnancy and should be evaluated prior to conception [812]. For example, an increased risk of fetal loss, growth retardation, premature placental aging with thrombosis, and preeclampsia are described in women with lupus [9]. Given the seriousness of these complications, ongoing monitoring and interventions to reduce them are critical. Pregnant women with SCI above the level of T6 also require special attention [7, 8, 10, 11]. Such women have an increased risk of autonomic dysreflexia during all stages of pregnancy and, if it is not recognized and treated, autonomic dysreflexia can be fatal [8, 11]. Although women with stable MS can safely carry a pregnancy to term, postpartum exacerbations of MS are quite common and occur in up to 30% of women within one month of delivery [11, 12]. Pregnancy management in women with disabilities should therefore include preconception counseling and evaluation to identify these and other potential problems that can occur throughout the course of the pregnancy.

Health care professionals need to know that physical barriers, such as the lack of accessible scales or examination tables, present enormous and recurring obstacles to obtaining adequate prenatal care. Also, communication barriers, particularly for those who are deaf or hard of hearing, affect a women's ability to receive appropriate medical care. In addition, there are some aspects of gynecologic health care such as informed consent, sedation, and contraceptive issues that are unique for women with developmental disabilities. A recent publication from the American College of Obstetricians and Gynecologists highlights ways to improve care for this group of women [7].

Preconception care is associated with improved pregnancy outcomes. It is recommended that primary care providers assess all women of reproductive age for their preconception risk conditions and provide or refer individuals for interventions as appropriate [13]. When caring for a woman with a disability, a team approach involving the primary physician, obstetrician, anesthesiologist, neurologist, physiatrist, and other allied health professionals such as occupational and physical therapists, is recommended [68, 11]. This is particularly important, as many obstetricians are unfamiliar with disability-related complications. A multidisciplinary approach, which involves nursing and social work, can further improve pregnancy outcomes. This shared approach to pregnancy management can also increase the level of comfort for women with disabilities, by knowing that more than one health care provider is looking out for their well-being.

Preconception counseling for women with disabilities should address the medical, psychological, and social impact of a pregnancy [10]. During preconception counseling, it is particularly important to evaluate the prenatal and postpartum social support systems available to women with disabilities. Body changes such as decreased mobility or bladder dysfunction increase the need for personal assistance with routine activities of daily living. Many women with disabilities also benefit from an occupational therapy evaluation to assess environmental barriers and explore adaptive equipment and techniques that facilitate breast feeding and infant care. Health care providers might want to recommend that women with disabilities explore creative parenting strategies such as those offered by Through the Looking Glass, a national resource center on parenting with a disability, located in Berkeley, California [6, 14].

An increasing number of women with disabilities are becoming pregnant. Despite this little is known about the reproductive experiences of these women. Population-based data describing the reproductive experiences of women with disabilities is virtually non-existent. Currently, disability is not regularly included in national or statewide surveys and surveillance tools related to pregnancy. Consequently, the true magnitude of health concerns, including reproductive issues, facing women with disabilities is largely unknown. To improve our understanding of these issues, disability should be included as a demographic variable in all national and state-level surveys addressing reproductive health issues.

All women of childbearing age, including women with disabilities, should have access to preconception care that addresses the medical, psychological and social impacts of pregnancy. Women with disabilities can and do have healthy pregnancies. Accurate knowledge of disabling conditions and a shared multidisciplinary approach to pregnancy management are critical components for good pregnancy outcomes among women with disabilities.

ReferencesLaPlanteMPCarlsonDDisability in the United States: Prevalence and causes, 1992. Disabilities Statistics Report (7)1996WashingtonU.S. Department of Education, National Center on Disability and Rehabilitation ResearchLaPlante MP, Carlson D. Disability in the United States: Prevalence and causes, 1992. Disabilities Statistics Report (7). Washington, DC: U.S. Department of Education, National Center on Disability and Rehabilitation Research; 1996. McNeilJMAmericans with disabilities: 1997. U.S. Bureau of the Census. Current population reports2001WashingtonU.S. Government Printing Office703McNeil JM. Americans with disabilities: 1997. U.S. Bureau of the Census. Current population reports. Washington, DC: U.S. Government Printing Office; 2001, p. 70–3. U.S. Census Bureau. Disability status of the civilian noninstitutionalized population by sex and selected characteristics for the United States and Puerto Rico: 2000(PHC-T-32). Washington, DC: U.S. Census Bureau, 2004. Available at: www.census.gov/population/www/cen2000/phc-t32.html. Accessed on December 7, 2004.Chevarley FM, Thierry JM, Gill CJ, Ryerson AB, Nosek MA. Health and well-being for women with disabilities. Unpublished data.AltmanBMKrotoskiDMNosekMATurkMACauses, risks, and consequences of disability among womenWomen with physical disabilities: Achieving and maintaining health and well-being1996BaltimorePaul H. Brooks3555Altman BM. Causes, risks, and consequences of disability among women. In: Krotoski DM, Nosek MA, Turk MA, editors. Women with physical disabilities: Achieving and maintaining health and well-being. Baltimore: Paul H. Brooks; 1996, p. 35–55. RogersJThe disabled woman's guide to pregnancy and birth2005New YorkDemos PublishingRogers J. The disabled woman's guide to pregnancy and birth. New York: Demos Publishing; 2005. Special issues in women's health2004WashingtonACOGAmerican College of Obstetricians and Gynecologists. Special issues in women's health. Washington, DC: ACOG; 2004. WelnerSLA provider's guide for the care of women with physical disabilities and chronic medical conditions1999North CarolinaOffice on Disability & HealthWelner SL. A provider's guide for the care of women with physical disabilities and chronic medical conditions. North Carolina: Office on Disability & Health; 1999. Martinez-RuedaJOArce-SalinasCAKrausAAlcocer-VarelaJAlarcon-SeqoviaFactors associated with fetal losses in severe systemic lupus erythematosusLupus19965113910.1177/096120339600500205Martinez-Rueda JO, Arce-Salinas CA, Kraus A, Alcocer-Varela J, Alarcon-Seqovia. Factors associated with fetal losses in severe systemic lupus erythematosus. Lupus 1996;5:113–9. 8743123Demsasio K, Magriples U. Pregnancy complicated by maternal paraplegia or tetraplegia as a result of spinal cord injury and spina bifida. Sexual Disab 1999;17(3).BaschatAAWeinerCPWelnerSLHaseltineFChronic neurologic diseases and disabling conditions in pregnancyWelner's guide to the care of women with disabilities2004PhiladelphiaLippincott Williams & WilkinsBaschat AA, Weiner CP. Chronic neurologic diseases and disabling conditions in pregnancy. In: Welner SL, Haseltine F, editors. Welner's guide to the care of women with disabilities. Philadelphia: Lippincott Williams & Wilkins; 2004. DavisRKMaslowASMultiple sclerosis and pregnancy: A reviewObstet Gynecol Surv199247290610.1097/00006254-199205000-00002Davis RK, Maslow AS. Multiple sclerosis and pregnancy: A review. Obstet Gynecol Surv 1992;47:290–6. 1570125U.S. Department of Health and Human Services. Healthy people 2000: National health promotion and disease prevention objectives. Washington, DC: U.S. Government Printing Office; 1991.KirshbaumMServing families with disability issues: Through the looking glassMarriage Fam Rev1995211/292810.1300/J002v21n01_02Kirshbaum M. Serving families with disability issues: Through the looking glass. Marriage Fam Rev 1995;21(1/2):9–28.

The findings and conclusions in this report are those of the author and do not necessarily represent the views of the Centers for Disease Control and Prevention.