Like other women, the reproductive choices made by women with developmental disabilities (WWDD) are influenced by complex and interacting personal, social, cultural, and system factors. However, little is known about how to effectively support WWDD to make healthy pregnancy decisions and maintain healthy reproductive behaviors. The project's long-term goal is to create effective interventions that help WWDD make informed decisions about becoming pregnant or maintaining a pregnancy, foster healthy perinatal choices and behaviors, and strengthen existing support systems. In order to create such interventions, much needs to be learned directly from WWDD. We propose to accomplish this long-term goal by conducting a qualitative study of women with a variety of developmental disabilities to better understand how they conceptualize and experience pregnancy. Our team is especially poised to pursue this line of research as we have extensive experience working directly with WWDD to improve their health. Team members include disability and health researchers from a variety of disciplines including social work, obstetrics and gynecology, internal medicine, psychology, and nursing as well as a diverse group of WWDD who have experienced pregnancy. We will use a collaborative team approach to meet the following specific aims: 1) to understand how WWDD make decisions to become pregnant or maintain a pregnancy and to identify barriers and facilitators to healthy perinatal choices and behaviors; 2) to understand the stresses, stigma, and anxiety experienced by WWDD during pregnancy decision-making and management; 3) to investigate the role of WWDD's informal and formal supports and services in their decisions and experiences; 4) to explore intervention approaches that WWDD would find most helpful in supporting their pregnancy decision-making, management of pregnancy barriers and stresses, and successful use of supports and services; and 5) to examine findings from women with different types of DD in order to understand how potential interventions may need to be modified to address the needs of different subgroups.
Aims will be achieved in five phases: Phase 1: Convene our Advisory Committee and together finalize consent materials, interview guides, and study protocols; Phase 2: Conduct 60 semi- structured qualitative interviews with WWDD; Phase 3: With the Advisory Committee review preliminary interview findings, develop our theoretical framework, and identify intervention areas; Phase 4: Conduct five focus groups with WWDD to validate our themes and framework, and to explore emergent intervention components; and Phase 5: the full team will review focus group findings and finalize our theoretical framework, and document and disseminate our findings. We plan to apply for continued funding to further develop interventions to support WWDD during their reproductive years. Our focus on identifying interventions to support WWDD to make informed reproductive choices, access optimal perinatal health services, and address psychosocial needs during pregnancy will advance the field in an important direction.
Like other women, the reproductive choices made by women with developmental disabilities (WWDD) are influenced by complex and interacting personal, social, cultural, and system factors. However, little is known about how to effectively support WWDD to make healthy pregnancy decisions and maintain healthy reproductive behaviors. This proposed project will create effective interventions that help WWDD make informed decisions about becoming pregnant or maintaining a pregnancy, foster healthy perinatal choices and behaviors, and strengthen existing support systems.
