The Internet as an additional source of Information on rare illness. A Facebook support group for parents of children with craniosynostosis as a case study

Abstract

Introduction Empirical studies show that belonging to a support group contributes to patient and caretaker empowerment. They also show that support groups significantly help parents and caretakers of ill children reduce stress and better handle the illness. Aim The aim of the study is to expand knowledge of how social media support groups function, and what impact they have on members. Material and methods Data was collected using online surveys conducted on 54 respondents. Results and discussion In particular, the respondents experienced empowerment in terms of ‘exchanging information’ and ‘finding recognition.’ Thanks to the online group, they felt better prepared to meet with their doctors. They identified with other members of the group, and considered the information posted thereby to be understandable and valuable. The stories of other parents helped them realize they were not alone. Conclusions (1) Most group members were mothers. (2) Above all, the members were seeking information, not emotional support. (3) Doctors were the main source of information on the disease. (4) Analysis indicated that ‘exchanging information’ was most strongly correlated with empowering outcomes, while ‘helping others’ was least correlated. (5) It was difficult for members to evaluate empowering outcomes.