Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review

Caring for children with rare genetic disorders is challenging due to complex medical needs and limited information. Often, information is scarce due to geographical dispersion and lack of access to expertise. Social media groups are increasingly used in parenting and in healthcare as tools for data sharing and acquisition, and online peer support. Online groups relating to specific rare diseases are increasingly used by parents navigating the difficulties of understanding their child's diagnosis and providing them with support. Parents expect professionals to interact with them about information reported from online groups, but little is known regarding the content within these groups and the impact on families.

We aimed to synthesize current knowledge of social media use among parents and caregivers of children with a rare genetic syndrome to inform how these data might be used in parent-doctor interactions and in the research setting.

We completed a comprehensive literature review across Web of Science, PubMed, and PsycINFO using a search strategy with themes of caregivers, rare genetic disease, and social media. Studies published in English from 2005 onwards, with parents and caregivers as a cohort and a focus on rare genetic diseases, were included. In total, 159 articles were identified, which underwent a title sift followed by an abstract sift based on inclusion and exclusion criteria. Reference lists of included articles were also reviewed. A total of 12 studies were included, and a critical synthesis methodology was used to extract relevant points.

Most parents and caregivers use social media platforms, especially Facebook (Meta Platforms, Inc), particularly the group function. They are using social media groups as a tool for finding information related to their child's rare genetic disease. A majority also engaged in online groups by sharing information and contributions of their own. This review highlights that caregivers are seeking three main types of support from social media: (1) medical information around diagnosis and treatments, (2) practical tips on care needs and equipment, and (3) social support, involving connection with other families who shared similar experiences. The use of social media improved accessibility to information regardless of time or geography and reduced feelings of isolation. Caregivers felt empowered in decision-making, and their interactions with health care professionals improved. Challenges include misinformation, concerns around privacy, emotional impacts of comparison, and a lack of online spaces for the rarest conditions.

Social media is a key tool for caregivers of children with rare genetic diseases. Addressing the associated challenges and harnessing the potential of these platforms can positively impact these families. Health care providers should consider discussing social media engagement in conversations with caregivers, and future research should focus on larger, longitudinal studies to explore the impacts of social media engagement.