Facebook Groups Offer Support, Sense of Community for Cleft Lip and Palate Parents and Patients

Alyssa KirkmanACPA News

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Alyssa Kirkman
(919) 933-9044
alyssa.kirkman@acpa-cpf.org

CHAPEL HILL, N.C. / November 15, 2018 – Social networking sites like Facebook offer patients with cleft lip and palate (CL/P) patients and their caregivers a forum to exchange information, experiences, and develop a sense of community, according to research published in the November 2018 issue of The Cleft Palate-Craniofacial Journal (CPCJ).

Perioperative care, managing associated genetic syndromes and maintaining dental health were primary areas of concern among CL/P patients and caregivers, while expectations, experiences and outcomes of treatment were key topics of discussion among patients, according to a content analysis of two existing, private Facebook groups, hosted by the Cleft Lip and Palate Association in the United Kingdom.

The study, conducted by the Centre for Appearance Research at the University of the West of England in Bristol, UK, was the first of its kind and examined real-time data, via video screen capture software, over a two-week period. The number of posts, comments, unique contributors, and post “likes” were recorded, as well as the type and theme of each post. In addition, an online survey collected data about the benefits and challenges of participating in the Facebook groups.

“Caregivers were most likely to use the Facebook groups for educational purposes, companionship and support,” said researcher Dr Nicola Stock. “Patients affected by CL/P most often used the groups to share common experiences and ask for treatment guidance.”

Overall, the researchers concluded that social networking sites offer a helpful source of health-related information and support for members of the CL/P community. However, closer monitoring of these groups may be needed.

“Patients and caregivers highly value the opportunity to connect with others and share experiences in an instant and semi-anonymous environment. However, it is advisable to provide close monitoring by trained administrators to help prevent the spread of medical misinformation,” Stock noted.

To learn more about the association and cleft and craniofacial conditions, please visit acpa-cpf.org.

About the American Cleft Palate-Craniofacial Association
The American Cleft Palate-Craniofacial Association (ACPA) is a nonprofit 501(c)(3) association of interested individuals and health care professionals who treat and/or perform research on oral cleft and craniofacial conditions. Since 1943, ACPA has worked to optimize outcomes for individuals with oral cleft and craniofacial conditions through education, support, research, advocacy and interdisciplinary team care. ACPA also provides information to affected individuals and families and seeks to educate the public about facial differences through its ACPA Family Services program. For more information, please visit acpa-cpf.org.