Like other women, the reproductive choices made by women with intellectual disabilities and autistic women (WWID/autistic women) are influenced by complex and interacting personal, social, cultural, and system factors. However, little is known about how to effectively support WWID/autistic women to make healthy pregnancy decisions and maintain healthy reproductive behaviors. The project's long-term goal is to co-create effective interventions with WWID/autistic women that empower them to make informed decisions about becoming pregnant or maintaining a pregnancy, including fostering healthy perinatal choices and behaviors. We propose to accomplish this long-term goal by conducting a qualitative study of WWID/autistic women to better understand how they conceptualize and experience pregnancy. Our team is well-positioned to pursue this line of research as we have extensive experience working directly with WWID/autistic women to improve their health. Team members include disability and health researchers from diverse disciplines including social work, obstetrics and gynecology, internal medicine, psychology, and nursing as well as a diverse group of WWID/autistic women who have experienced pregnancy. A collaborative team approach will be used to meet the following specific aims: 1) understand how WWID/autistic women make decisions to become pregnant or maintain a pregnancy and identify barriers and facilitators to healthy perinatal choices and behaviors;2) understand the stress, stigma, anxiety, and positive aspects experienced by WWID/autistic women during pregnancy;3) investigate the role of WWID/autistic women's informal and formal supports and services in their decisions and experiences;4) identify information and explore self-management approaches that WWID/autistic women would find most helpful in supporting pregnancy decision-making, management of pregnancy-related stresses, healthy behaviors during pregnancy, and successful use of supports and services;and 5) compare findings from WWID/autistic women in order to understand how potential interventions may need to be modified to address the needs of different subgroups.
Aims will be achieved in four phases: Phase 1: convene our Advisory Committee;collaboratively implement strategies for effective participation;finalize consent materials, interview guides, and study protocols;Phase 2: conduct 60 semi-structured qualitative interviews with WWID/autistic women;Phase 3: collaboratively analyze interview data, co-develop our theoretical framework, and identify potential intervention areas (attention will be given to commonalities and differences between the experiences of women with diagnoses of ID, autism, or both to better understand when and how self-management strategies may need to be tailored to disability type);and Phase 4: collaboratively develop the Informational Guide, "What to know when having a baby," and disseminate the study findings and the Guide. We plan to apply for continued funding to further develop empowering, self- management interventions to support WWID/autistic women during their reproductive years.
Public Health Relevance Like other women, the reproductive choices made by women with intellectual disabilities (WWID) and autistic women are influenced by complex and interacting personal, social, cultural, and system factors. However, little is known about how to effectively support WWID and autistic women to make healthy pregnancy decisions and maintain healthy reproductive behaviors. This proposed project will create effective interventions that help WWID and autistic women make informed decisions about becoming pregnant or maintaining a pregnancy, fostering healthy perinatal choices and behaviors, and strengthening existing support systems.