JMIR Publications

ABSTRACT

Background:

Loneliness, social isolation and feeling disconnected from society are commonly experienced by parents of children with rare diseases and among others reasons for special supportive care needs. Social networking platforms are generally increasingly used for health communication, information exchange and support. In the field of pediatric rare diseases, qualitative studies have shown that Facebook is utilized by and beneficial for persons affected by pediatric rare disease through online support groups. Nonetheless, the extent of this usage has not been investigated.

Objective:

This study aims to provide a comprehensive quantitative analysis of the extent of Facebook usage as a tool for pediatric rare disease support groups and to explore factors that influence a disease’s representation on Facebook. These results potentially offer important insights for future public health initiatives and give direction to further research which can improve much needed support of parents of children with rare diseases.

Methods:

We determined pediatric rare diseases using the inventory of the online portal Orphanet. Facebook support groups were identified by searching 5 synonymous disease descriptions using the group category’s search bar. Disease- and group-describing parameters were statistically analyzed using standard descriptive statistical methods.

Results:

6,398 Facebook support groups representing 826 diseases (19.5% of all searched diseases) were found. 69% are private groups. Group type, size, activity, new memberships, and language vary largely between groups (member count: minimum 1, maximum 23,414; activity last 30 days: minimum 0, maximum 3,606). The highest percentage of awareness/information groups was found for teratogenic diseases. The odds of finding a Facebook group increase according to the level of information available about the disease (prevalence, inheritance, disease type). The number of groups per disease increases with higher prevalence.

Conclusions:

Facebook is widely used as a tool for support groups for pediatric rare diseases and the relevance increases continuously. Two thirds of the groups are private groups, indicating the group participants’ need for privacy, which should be further explored. The advantages and limitations of Facebook as a tool for support groups in the field of rare diseases should be further investigated as it will allow health professionals to use Facebook more meaningfully in their counselling and guidance of affected individuals and their family members.