Repost: This post summarises a research paper “I feel like only half a man.” Online Forums as a Resource for Finding a “New Normal” for Men Experiencing Fertility Issues. by Dilisha Patel, Ann Blandford, Mark Warner, Jill Shawe and Judith Stephenson. The paper was presented at the 22nd ACM Conference on Computer-Supported Cooperative Work and Social Computing. It has also been published in the journal Proceedings of the ACM on Human-Computer Interaction (PACM HCI).
“Are there any other men like me in the same situation? I feel really alone on this journey. How do you cope?”
When faced with an unexpected life event, it can feel like the world has been turned upside down. Finding information or support in such a situation is often a confusing process. This can be experienced when facing fertility problems, a situation which often requires people to make sense of a situation or unexpected new reality. Much of the research on fertility and (management of) infertility is focused on women, which can indirectly perpetuate inequality as well as cultural and societal norms of women bearing the burden and responsibility around fertility. In this paper, we investigated how some men seek information and support online in order to better understand their sense-making journey and how online forums support finding a “new normal” for men who experience fertility problems.
Infertility affects nearly 10 million couples worldwide, with male factor infertility contributing half of these cases. Men report to feeling ignored by health professionals, and are unable to share their concerns with their personal networks. This feeling of isolation can lead to some men seeking comfort and understanding in anonymous online spaces.
From an analysis of over 600 online forum posts from men who were experiencing fertility problems, we found that men used online forums to ask for information and advice on diagnoses, investigations, and to whether check their results and prognoses were “normal” as compared to those going through similar experiences. Sharing with a community of similar others helped men to make sense of information as well as fill knowledge gaps they may encounter during the fertility journey.
Further to gaining information, online forums were used to share intimate emotions of not feeling good enough or “like only half a man” due to having fertility problems. Online forums gave men a space to openly share their feelings, and other forum users provided positive encouragement and affirmation in response to posts of negativity. Men used the forums to voice their internalised feelings that they were unable to voice in other domains out of fears of being misunderstood. This helped men to understand that, whilst the unexpected life event of infertility impeded what they themselves understood to be “normal”, they were “normal” in relation to other forum users, which led to developing a “socially constructed normal” within the online space.
Online forums were also used as an anonymous space where men could discuss with other men, as opposed to their partners, “sometimes men do prefer to talk about things among ourselves before we ask for help from women.” Being able to talk to an attentive and supportive anonymous audience enabled men to share things they otherwise may not have. Having the perspective and understanding of other men who had or were currently undergoing similar journeys gave users of online forums comfort which they were unable to obtain in their offline communities.
We found that the behaviours exhibited in online forums can be seen in the journey of “finding a new normal” as presented by Genuis & Bronstein , which enabled us to elaborate their model to the context of infertility (Figure 1). Men seemed to enter online forums once a fertility problem has been identified, therefore the stage of “no illness normal” cannot be adequately reviewed from online forum comments. However, a breakdown of normal, information behaviours, and the development of a new socially constructed normal were evident in the data we analysed.
Our findings show how online forums are used when men who experience fertility problems endure a breakdown of their existing normal, how these forums are used to fill gaps in existing knowledge, as well as to support a sense of belonging and develop a socially constructed and accepted “new normal”.
By understanding how men use online forums, we can start to understand how digital tools can support men’s information seeking journey whilst they are navigating their fertility journey.
 Shelagh K Genuis and Jenny Bronstein. 2017. Looking for “normal”: Sense making in the context of health disruption. Journal of the Association for Information Science and Technology 68, 3 (2017), 750–761.