Facebook Support Groups for Pediatric Rare Diseases: Cross-Sectional Study to Investigate Opportunities, Limitations, and Privacy Concerns

Most participants in two studies visited online support groups at least once per day.

“Two studies [16,18] reported that most participants visited online support groups at least once per day.”

One included study was at higher risk of bias because there was no clear explanation for how recruitment platforms were selected.

“One study was identified as being at higher risk of bias, as there was no clear explanation for how the recruitment platforms were selected [18].”

Improved caregiver knowledge from engagement in social media groups led to reduced stress.

“One study [18] reported that improved caregiver knowledge as a result of engagement in social media groups led to reduced stress.”

Parents felt the presence of a health care provider in social media groups could reduce misinformation.

“Two studies [18,21] noted that parents felt the presence of a health care provider in social media groups could reduce misinformation.”

Health care providers do not routinely recommend online support to parents; less than 25% were directed to Facebook groups by clinicians compared to 60% who self-initiated searches.

“However, 1 study [18] mentioned that health care providers do not routinely recommend online support to parents, stating that less than 25% were directed to Facebook groups by their clinicians compared to 60% who self-initiated searches for online groups.”

Four included studies collected data using Facebook searches or groups that could include members across multiple countries.

“Altogether, 4 studies [18,20,21,25] (2 US-based [21,25] and 2 Germany-based [18,20]) collected data using Facebook searches or groups that could include members across multiple countries.”

Nine included studies collected data using surveys or semistructured interviews to gain an understanding of parental views, mostly advertised through rare disease organizations.

“9 studies [14-16,18,19,22-24,26] collected data using surveys or semistructured interviews to gain an understanding of parental views, mostly advertised through rare disease organizations.”

Four included studies commented on the sharing of information by parents via these groups.

“Not only are parents accessing information via these groups, but also 4 studies [18,21,22,24] commented on the sharing of information.”

Almost half of the included studies reported that parents were sharing their child's personal experiences and stories within these groups.

“Almost half of the included studies reported that parents were sharing their child’s personal experiences and stories within these groups [14,18,20,21,24].”

Personal experiences shared on social media with positive outcomes provided parents with hope for their own child in the future.

“Personal experiences shared on social media with positive outcomes also provided parents with hope for their own child in the future [14,18,22].”

Parents sought or shared practical information on caring for a child with a rare genetic disease in 9 included studies.

“Practical information on caring for a child with a rare genetic disease was sought or shared by parents in 9 [14-16,18,21-25] of the included studies.”

Parents would like health care professionals as members of social media groups.

“There are mixed opinions on whether physician involvement in these groups would be welcomed by parents and caregivers, although 2 studies [18,21] highlight that parents would like health care professionals as members.”