CASE REPORT
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
Elżbieta Nieroba 1  
,   Dawid Larysz 2  
 
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1
Departament of Sociological Sciences and Social Work, University of Opole
2
Department of Radiotherapy, Maria Skłodowska-Curie Memorial Hospital – Institute of Oncology – Gliwice Brunch
CORRESPONDING AUTHOR
Elżbieta Nieroba   

Departament of Sociological Sciences and Social Work, University of Opole, Katowicka 89, 45-061 Opole, Poland. Tel.: +48 77 452 7421.
Submission date: 2018-09-25
Final revision date: 2019-06-13
Acceptance date: 2019-06-26
Online publication date: 2019-12-17
 
Pol. Ann. Med. 2020;27(1):53–58
 
KEYWORDS
TOPICS
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.

ACKNOWLEDGEMENTS
The authors would like to acknowledge the members of Craniosynostosis Facebook social support group for participating in this study.
CONFLICT OF INTEREST
None.
FUNDING
None.
 
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