Abstract Information


Talking in Private: Facebook Closed Group Promotes SCI Peer Support

1Flaum T, 2Lollino S
1Hill Foundation for Families Living with Disabilities, Chicago, IL, United states; 2Hill Foundation for Families Living with Disabilitiess, Chicago, IL, USA

Title: Talking in Private: Facebook Closed Group Promotes SCI Peer Support

Objective: Facebook community groups are playing an ever-larger role in daily life. Facebook reports over 600 million groups have been formed in the past decade. FacingDisability.com, a website that contains more than 2,000 videos, is a gateway to healthcare information from spinal cord injury experts and to the life experiences of families coping with spinal cord injury. FacingDisability.com created a private group on Facebook with membership limited only to those with traumatic spinal cord injuries and their families. People with SCI have a continuing need to build resilience with connections to others like them. This poster presents data showing how the FacingDisability.com Facebook group, “You Are Not Alone – Dealing With Spinal Cord Injury,” promotes communication among people living with SCI.

Design/Method: On February 1, 2017, FacingDisability.com launched a private (closed) group on Facebook. A closed group is a place where approved members with specific interests can gather and speak openly--without their usual circle of friends reading along. None of the subjects discussed can be seen on a non-member’s newsfeed. Members were added to the closed group only after answering a series of screening questions specific to spinal-cord-injured individuals. (For example: “If you have a spinal cord injury, what is the level of your injury?”) FacingDisability.com promoted the private group to potential members in emails and its monthly newsletter and purchased Facebook ads targeted to the SCI community. Within eight months the group had more than 2,000 members.

Results: Facebook Analytics offer detailed insights into group membership and engagement. Current members range in age from 18-65+. The age range 25-64 accounts for 82% of the members. Women constitute 59% of members. Most members (80%) live in the U.S. Members “engage” (post, comment or react) about equally throughout the week, with Mondays and Wednesdays being slightly higher; most popular times are before lunch (11:00 am) and before dinner (5:00pm).

More than 2 out of 3 members (67.5%) engage with the group every week; slightly more than half (51%) engage with the group every single day.

What are they talking about? The posts with the highest engagement rates are about sex and finding love, caregiving, rehabilitation and medical complications, such as autonomic dysreflexia, UTIs and pressure ulcers. Trading personal experiences with baclofen pumps, different types of catheters and wheelchair problems are discussed daily.

The tone of all posts and comments is almost uniformly serious, sympathetic and helpful. For example, more than half the group (1,100 people) reached out to encourage a newly injured teenager (C7 quadriplegia) to let her know she is not alone. More than 800 people responded to a man who wrote about how his service dog had improved his life and attitude “immeasurably.” Almost 900 people responded to a young man who asked: “How do I find a woman who will be with me now that I’m paralyzed?”

Conclusion: Facebook closed groups can provide a peer community that offers valuable support for people coping with spinal cord injuries.


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