Objective: To qualitatively evaluate the content of communication in Facebook communities dedicated to preterm infants.
Design: The 25 largest public English-language Facebook groups focusing on preterm infants were identified. For each group, the 20 most recent wallposts and a maximum of the 15 first comments to these wallposts, and the 15 most recent discussion topics were analysed according to a thematic coding scheme. The purpose of each group was determined and personal characteristics of administrators and active posters were analysed.
Results: 1497 individual Facebook groups focusing on preterm infants were found, wherein the 25 largest had between 391 and 14 986 members. Non-profit fundraising groups comprised 48% of analysed groups and had the greatest number of members (median 1450, IQR 548-5435), followed by general awareness (24% of all groups, members: median 1183, IQR 658-2116) and interpersonal support groups (28% of all groups, members: median 823, IQR 484-1022). 85.0% of administrators and 91.5% of posters were women, and two-thirds of posts had been written by mothers of preterm infants. The analysis of posts, comments and discussion topics (n=1054) showed that 'information sharing' (31%) and 'interpersonal support' (53%) were the most common purposes.
Conclusions: Facebook groups related to preterm birth have become a popular tool for fundraising and awareness-raising. However, most group members use these forums for information sharing and interpersonal support. Given their popularity and reach, further research is warranted to understand the motivations, implications and risks of dynamic online communication among parents of preterm infants.
Keywords: information seeking behaviour; online social media; preterm infant; social network.