The virtual infertility community: a qualitative analysis of patient experiences shared on Instagram

• Published in: Journal of assisted reproduction and genetics 2021-03, Vol.38 (3), p.613-620
• Main Authors: Perone, Hanna R., Herweck, Alexandra M., Stump, Hannah M., Levine, Hannah M., Wong, Adriana J., Carugno, Jose
• Format: Article
• Language: English
• Subjects: Adaptation, Psychological; Assisted Reproduction Technologies; Community support; Evaluation Studies as Topic; Female; Gynecology; Human Genetics; Humans; In vitro fertilization; Infertility; Infertility - psychology; Infertility - therapy; Medicine; Medicine & Public Health; Mental disorders; Patient Outcome Assessment; Patients; Qualitative research; Reproductive Medicine; Social interactions; Social Media - statistics & numerical data; Social Support
• ISSN: 1058-0468; 1573-7330
• DOI: 10.1007/s10815-020-02028-6

Purpose To characterize the experiences of patients undergoing in vitro fertilization (IVF) through a qualitative analysis of content shared on Instagram. Methods We analyzed Instagram posts from five randomly selected days in February 2020. The hashtag, #ivfcommunity, was selected to identify public posts authored by Instagram’s IVF community members from multiple treatment centers. Text, photos, hashtags, and emojis were collected from 452 included posts and entered into a study-specific database. Using thematic coding, a four-member team initially coded the first day in February. Common themes were agreed upon by all team members, and a preliminary codebook was created for further analysis. The remaining posts were coded by two-member teams who reached a consensus on the multiple themes assigned to each individual post. Results Analysis of posts led to the identification of five major themes: documentation of the medical and physical experience of IVF (76.1%), the emotional spectrum (43.1%), social support (49.2%), coping mechanisms (29.9%), and education (receipt, provision) (11.1%). Conclusion Our findings suggest that women undergoing IVF often utilize social media to document daily experiences, offer and recognize sources of community support, and provide and receive education regarding their treatments. Given the increased prevalence of mental health conditions, medical providers should explore challenges discussed on online platforms and consider harnessing the supportive nature of online communities to supplement care for IVF patients.