“I don't really talk about woman stuff”: Reproductive health needs experiences of women with intellectual disabilities and participatory research

Background: Women with intellectual disabilities (ID) represent an underserved, disparity population with known barriers to care in multiple health domains, including disparities in research participation.  There are especially notable disparities in terms of reproductive health care access and outcomes for women with ID.  The sexuality of women with ID is often perceived as taboo, or non-existent, and little is known about the reproductive health care needs and experiences of this population.

Methods: We conducted qualitative interviews with women with ID, as well as a photo voice project.  Photo voice is a participatory research method where participants are given cameras and become co-investigators on the project as they answer research questions photographically.  Results were analyzed collaboratively using grounded coded theory.

Results: Important themes include disability-specific and general population barriers to care,  invisibility, communication barriers between patients with ID and their providers, lack of “safe space” to discuss reproductive health needs and issues, decision making and advocacy concerns,  shaming and controlled sexuality, and lack of access to desired contraception and sexuality education.

Discussion: While further research is needed to more fully quantify reproductive health care experiences and describe the unmet reproductive needs of women with ID, significant barriers to care seem to drive reproductive health disparities.  Collaborative education for patients and providers may help address communication barriers.  Participatory research is a viable method that should be explored as a means of addressing disability specific barriers to reproductive health care access.