Being (a) patient—navigating desire through online communities in assisted reproductive technology

TL;DR

This study explores how online communities help people navigate the emotional and social challenges of assisted reproductive technology in Italy.

Contribution

The study reveals how digital communities shape reproductive experiences through stigma management, knowledge sharing, and emotional support.

Findings

Digital communities provide emotional validation and normalize the anxiety of ART journeys.

Platform features influence interaction dynamics and the construction of reproductive subjectivities.

Female predominance in these spaces reflects gendered health information-seeking behaviors and medical burdens.

Abstract

Italy faces a significant demographic decline, with Assisted Reproductive Technology (ART) becoming a critical response to infertility. Despite its medicalization, ART remains socially ambivalent, marked by stigma and emotional isolation. Online platforms provide spaces for navigating this complex experience. This study, part of the PRIN PNRR Fertility Over fortIES (FORTIES) project, explores how digital communities dedicated to ART serve as socio-technical environments for articulating and transforming reproductive desire, focusing on stigma, knowledge sharing, and emotional support.

We conducted a netnographic study across three digital spaces: a public ForumFree forum, Facebook groups, and a Telegram chat. Data were collected via web scraping, manual archiving, and platform-specific data extraction tools. The analysis employed a grounded theory approach in Nvivo software, focusing on themes of medical knowledge, emotional support, and the performativity of parenthood.

The netnographic analysis revealed discursive practices and relational strategies that shape the experience of ART pathways in online communities. A central theme was the female predominance on the platforms, driven by women’s higher participation in seeking health information and the uneven medical burden in ART. Digital communities legitimize experiences by offering emotional support and validation, normalizing vulnerability and anxiety common in ART journeys. The sharing of clinical and personal experiences creates a hybrid form of situated knowledge, bridging technical language with lived experience. Parenthood is presented as a symbolic, uncertain process, anticipated before pregnancy. Platforms foster ritualized waiting practices, helping manage uncertainty. The analysis of affordances showed how platform features shape specific interaction dynamics.

ART is a complex, multimodal experience involving clinical, emotional, and relational dimensions. In Italy, infertility and medicalized parenthood are often stigmatized, pushing these experiences into digital spaces where platforms such as Telegram, Facebook, and ForumFree provide crucial support and community. These platforms allow users to share personal and medical experiences, manage uncertainty, and create a sense of belonging. However, challenges such as access barriers, misinformation, and the reinforcement of normative expectations remain. The study highlights that ART is not just a medical process but is deeply shaped by digital storytelling and collective participation, influencing how reproductive subjectivities are constructed and understood.