Contraceptive and Pregnancy Decision-Making Autonomy and Health Care Experiences Among Women With Intellectual Disabilities.

Abstract

Background: There is currently limited research exploring the extent to which women with an intellectual disability experience autonomy over contraception, pregnancy timing and pregnancy outcome decisions. Previous studies have highlighted inequities in sexual and reproductive health outcomes. However, barriers and facilitators of reproductive autonomy for women with an intellectual disability across the reproductive journey, including health care experiences, are poorly described; this is the focus of the current study.

Methods: Ten women with intellectual disabilities participated in focus groups or individual interviews where they discussed their experiences of accessing sexual and reproductive health services and making reproductive health decisions. Data were analysed using reflexive thematic analysis.

Results: Three themes elucidate how a lack of sexual and reproductive health information and violence impacted many participants' ability to control timing of conception and make informed pregnancy outcome decisions. The first theme describes contraceptive literacy as a barrier to reproductive autonomy. Most participants received no contraception or reproductive health education prior to their first pregnancy. While most women were aware of common forms of contraception and pregnancy options, their contraceptive knowledge was incomplete or incorrect. The second theme explores how most participants experienced agency over pregnancy outcome decisions, though informed decision-making was hampered by reproductive coercion and abuse, delayed pregnancy detection and insufficient information about all pregnancy options. The third theme identifies health professionals as pivotal in empowering reproductive agency and facilitating informed decision-making.

Conclusions: Women with intellectual disabilities demonstrate the willingness and the ability to make informed and autonomous reproductive health decisions when appropriately supported with care and information. However, they face reproductive coercion and abuse and are often required to overcome numerous systemic challenges to assert their reproductive rights. Significant efforts are needed to better understand and address barriers to informed reproductive decision-making.