Facebook as a Lifeboat: An Interview Study Exploring the Role of Facebook in Supporting Parents of Children with Rare Diseases

Abstract

Parents of children with rare diseases face unique challenges due to scarce medical expertise and limited information sources. Social media, particularly Facebook, have become a vital (and sometimes the only) space for parents to access information, share experiences, and find emotional support. This study examined how parents of children with an ultra-rare genetic condition [FOXP1] engage with a Facebook group. Semi-structured interviews were conducted with 19 parents across eight countries and analyzed using thematic analysis. Based on the results, we developed the “Phased Social Media Engagement in Rare Disease Caregiving” model. The model illustrates how informational, emotional, and psychological needs may vary across the caregiving journey and under different circumstances. This model delineates three phases of engagement: (1) Frantic, characterized by intensive information seeking and urgent reassurance seeking commonly described around the time of diagnosis; (2) Selective and Saturated, in which parents, having surpassed an information threshold, used Facebook more strategically for targeted problem-solving and advocacy, while consciously avoiding distressing content; and (3) Mentoring, in which some parents guided and reassured newly diagnosed families, deriving meaning and identity through supporting others. Results highlight both the benefits and risks of online peer support groups, underscoring the need for healthcare providers to acknowledge these groups and help parents navigate information overload and emotional triggers.