JMIR Publications

ABSTRACT

Social Media groups (SMG) enable individuals with rare disease to connect with one another, and access instant support and advice. Accelerated diagnoses of GNDs over the last decade have driven rapid expansion of gene specific SMG membership. Limited literature regarding parental use of SMGs in the context of managing their child’s GND exists. We undertook a mixed methods study within a cohort of children with GNDs (GenROC). 351 Parents provided quantifiable survey responses regarding their use of social media. We also interviewed 17 parents to understand how they use SMGs and regarding their views on the data held within these groups. Our survey found 92% of parents use SMGs related to their child’s genetic disorder and of these almost all are on Facebook. Most SMGs are closed, international, have more than 200 members, are specific to the GND and associated with a corresponding charity or foundation. Most parents could not recall what they had consented to when joining the group with respect to the use of their posted data. Most parents trust the data that is shared but acknowledged the anecdotal nature of it. Parents found the most valuable element of the SMG to be shared lived experience with other families. Interview data from 17 parents were coded and analysed thematically. Four main themes were identified: 1) SMGs for support and shared lived experience; 2)Possible harms from participation in SMGs; 3)SMG composition, demographics and dynamics; 4)Usefulness and use of data shared within the groups. This mixed method study shows the evolving landscape of SMG use in neurodevelopmental disorders, highlights its benefits and downsides and is widely applicable to all parent SMGs for specific niche medical conditions. Utilising the strength of these groups in a more collaborative approach in the future could prove useful to clinicians, families and researchers alike.