Did contraception cause my chronic health condition? Exploring the sense-making of chronic disease etiology and experiences in the context of contraceptive mis-/disinformation
Contraception
Awarded 2025
Contraceptive misinformation and disinformation
Asha Hassan, PhD, MPH
University of Minnesota
$75,000

This project seeks to understand the experiences of individuals with chronic conditions encountering and engaging with contraceptive mis- and disinformation on social media. People living with chronic health conditions such as autoimmune conditions, polycystic ovarian syndrome (PCOS) and endometriosis often experience provider dismissal of symptoms, confusing healthcare-seeking pathways, lengthy time to diagnosis, and financial strain. Self-advocacy, seeking support, and seeking information from sources outside of healthcare providers can be central strategies for coping with and understanding a chronic health condition. Within this context, people living with chronic conditions have unique experiences navigating reproductive healthcare and decision-making and may have different experiences engaging with contraceptive mis- and disinformation on social media. Experiences of bias and minimization in interactions with healthcare providers may lead people with chronic health conditions to seek out information to improve their health, including reproductive health, outside of the healthcare system. These other sources of information, including social media, websites, and peers, may contain greater levels of misinformation or disinformation. We will conduct qualitative interviews with individuals with chronic conditions to provide a window into how they are interacting with and navigating the complex information ecosystems related to contraception and chronic illness. Our approach and interview guide will be informed by a community advisory board composed of five individuals with expertise in disability justice, chronic illness advocacy, clinical care, and reproductive health. From the interviews, we will develop a toolkit and information brief accessible to both patients and healthcare providers evaluating online information and highlighting key study results.