Information Needs Across the Family Planning Continuum: A Survey of Women with Chronic Autoimmune Inflammatory Conditions

OBJECTIVE:

This study assessed the information needs of women with chronic autoimmune inflammatory conditions across the pregnancy continuum.

METHODS:

We conducted a web-based survey with women about information needs related to family planning. Eligible participants were female, aged 18-44, had a diagnosis of a chronic inflammatory condition, and were at one of three pregnancy stages (planning, currently pregnant, or postpartum).

RESULTS:

The survey yielded 209 responses. Respondents had high levels of information needs and were active information seekers. Many respondents reported difficulty finding the information they need. Over half (56.9%) reported receiving conflicting information from different doctors, and a majority of those respondents reported doing their own research. Respondents expressed the greatest interest in resources that facilitated connections to other women and their experiences (87.4%). Pregnancy stage was significantly associated with information needs and preferences; respondents in the planning stage of pregnancy had higher information needs, reported more dissatisfaction with communication with doctors, and were less connected to pregnancy resources.

PRACTICE IMPLICATIONS:

Both providers and health/advocacy organizations have a role in improving information around this topic, such as developing and disseminating resources tailored to pregnancy status and supporting patient-centered communication around family planning.

 2019 Aug 8. pii: S0738-3991(19)30321-0. doi: 10.1016/j.pec.2019.08.005. [Epub ahead of print]