JMIR Publications

ABSTRACT

Background:

Caring for children with rare genetic disorders is challenging due to complex medical needs and limited information. Social media has now emerged as a critical tool for parents navigating these difficulties.

Objective:

We aimed to synthesize current knowledge of social media use among parents and caregivers of children with a rare genetic syndrome.

Methods:

We completed a comprehensive literature review across Web of Science, PubMed and PsycINFO databases using search strategy themes of caregivers, rare genetic disease and social media. 159 papers were identified which underwent a title sift followed by abstract sift in which inclusion and exclusion criteria were applied. Reference lists of included papers were also reviewed. 12 studies were included in total and critical synthesis methodology was used to extract relevant points.

Results:

Key findings indicate that most parents and caregivers are using social media platforms, especially Facebook, 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: informational, practical and social support. The use of social media for information finding was shown to empower caregivers in decision-making and accessibility regardless of time or geography reduced feelings of isolation. Challenges include misinformation, privacy concerns and negative emotional impacts.

Conclusions:

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 have a positive impact for these families. Healthcare 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.