Attitudes about the use of internet support groups and the impact among parents of children with Cornelia de Lange syndrome

Facebook is the most commonly used social media platform among parents and caregivers of children with rare genetic diseases.

“especially Facebook (Meta Platforms, Inc), particularly the group function.”

A majority of parents and caregivers engaged in online groups by sharing information and contributions of their own.

“A majority also engaged in online groups by sharing information and contributions of their own.”

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.”

Around 5 included study cohorts were based in the United States, 1 in Canada, and 2 in Europe.

“Around 5 [14-16,24,26] study cohorts were based in the United States, 1 [22] in Canada, and 2 [19,23] in Europe.”

Parents have reported that online connections with other families provide more practical, specific, and applicable information than that from health care providers.

“Parents have even reported that online connections with other families provide more practical, specific, and applicable information than that from health care providers [15,16].”

Studies specifically exploring parents' experiences with social media support groups within a rare disease context are scarce.

“Studies specifically exploring parents’ experiences with social media support groups within a rare disease context are scarce [16].”

YouTube was associated mainly with personal story sharing.

“YouTube, as mentioned in 3 studies [16,22,26], was associated mainly with personal story sharing”

Facebook was found to have the largest proportion of support groups compared to other sites.

“Facebook was the most commonly used platform and was found to have the largest proportion of support groups compared to other sites [14,16,21].”

Most studies found that between 80% and 100% of parents are engaging in online support groups.

“Most studies found that between 80% and 100% of parents are engaging in online support groups [14,16,19,20].”

Of caregivers engaging in social media support groups, a majority (58.5%, 86%, and 81%) actively contributed and shared information within the groups.

“Of those caregivers who were engaging in social media support groups, 3 studies [16,19,23] reported that a majority (58.5%, 86%, and 81%, respectively) also actively contributed and shared information within the groups.”

Parents use social media for medical information finding.

“Eight studies [16,20-26] showed parental use of social media for medical information finding.”

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.”

Emotional support seeking and connection with other families was a main reason parents joined online support networks, found in 7 reviewed studies.

“Another main reason for joining online support networks was emotional support seeking and connection with other families, as found in 7 [14-16,19,20,23,26] of the reviewed studies.”

Engagement with social media and online groups could trigger negative emotions and increase parental anxiety due to information overload and witnessing negative outcomes for other children.

“However, several studies also noted that engagement with social media and online groups could trigger negative emotions and increase parental anxiety due to information overload and witnessing negative outcomes for other children [14,16,19,22,23,26].”

The rarity of some diseases means providers cannot offer adequate information on the diagnosis.

“Four studies [14,16,23,26] also highlighted that the rarity of some diseases means providers cannot offer adequate information on the diagnosis, and therefore, parents rely more heavily on online communication for information.”

Parents of children with rare diseases rely more heavily on online communication for information.

“Four studies [14,16,23,26] also highlighted that the rarity of some diseases means providers cannot offer adequate information on the diagnosis, and therefore, parents rely more heavily on online communication for information.”

Three included studies asked caregivers specific questions relating to the impact of their social media engagement.

“Three studies [16,19,23] asked caregivers specific questions relating to the impact of their social media engagement.”

Over half of respondents in two studies viewed online support groups as positive.

“The overall impact of online support groups was assessed by 2 studies [16,22], both of which reported that over half of respondents viewed them as positive.”

Emotional support, solidarity, and understanding provided by social media groups positively influenced parental behavior toward the affected child and their siblings.

“One study [16] asked specifically about the psychological impact of internet support groups and found that emotional support, solidarity, and understanding provided by social media groups positively influenced parental behavior toward the child affected and their siblings.”

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.”