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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Departament of Sociological Sciences and Social Work, University of Opole
Department of Radiotherapy, Maria Skłodowska-Curie Memorial Hospital – Institute of Oncology – Gliwice Brunch
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
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.

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.

(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.

The authors would like to acknowledge the members of Craniosynostosis Facebook social support group for participating in this study.
van Uden-Kraan CF, Drossaert CHC, Taal E, Seydel ER, van de Laar MAFJ. Participation in online patient support groups endorses patients` emprowement. Patient Educ Couns. 2009;74(1):61–69.
Anderson JG, Rainey MR, Eysenbach G. The impact of CyberHealthcare on the physician–patient relationship. J Med Syst. 2003;27(1):67–84.
Diaz JA, Griffith RA, Ng JJ, Reinert SE, Friedmann PD, Moulton AW. Patients’ use of the Internet for medical information. J Gen Intern Med. 2002;17(3):180–185.
Glenn AD. Using online health communication to manage chronic sorrow: Mothers of children with rare diseases speak. J Pediatr Nurs. 2015;30(1):17–24.
Laurent MR, Vickers TJ. Seeking health information online: Does Wikipedia matter? J Am Med Inform Assoc. 2009;16(4):471–479.
Nambisan P. Information seeking and social suport in online health communities: impact on patients’ perceived empathy. J Am Med Inform Assoc. 2011;18(3):298–304.
O’Grady LA, Witteman H, Wathen CN. The experiential health information processing model: supporting collaborative web-based patient education. BMC Med Inform Decis Mak. 2008;8:58.
Coulson NS, Greenwood N. Families affected by childhood cancer: an analysis of the provision of social support within online support groups. Child Care Health Dev. 2012;38(6):870–877.
Mustafa HR, Short M, Fan S. Social support exchanges in Facebook social support group. Procedia. Social and Behavioral Sciences. 2015;185:346–351.
Hodges L, Dibb B. Social comparison within self-help groups. Views of parents of children with Duchenne muscular dystrophy. J Health Psychol. 2010;15(4):483–492.
Coulson NS, Buchanan H, Aubeeluck A. Social support in cyberspace: A content analysis of communication within a Huntington’s disease online support group. Patient Educ Couns. 2007;68(2):173–178.
Coulson NS. Receiving social support online: an analysis of a computer-mediated support group for individuals living with irritable bowel syndrome. Cyberpsychol Behav. 2005;8(6):580–584.
Broom A. Virtually he@lthy: The impact of Internet use on disease experience and the doctor-patient relationship. Qual Health Res. 2005;15(3):325–345.
Margalit M, Raskind MH. Mothers of children with LD and ADHD: Empowerment through online communication. J Spec Educ Technol. 2009;24(1):39–49.
Malik SH, Coulson NS. Computer-mediated infertility support groups: an exploratory study of online experiences. Patient Educ Couns. 2008;73(1):105–113.
van Under-Kraan CF, Drossaert CHC, Taal E, Shaw BR, Seydel ER, van de Laar MAFJ. Empowering processes and outcomes of participation in online support groups for patient with breast cancer, arthritis, or fibromyalgia. Qual Health Res. 2008;18(3):405–417.
Dolce MC. The Internet as a source of health information: experiences of cancer survivors and caregivers with healthcare providers. Oncol Nurs Forum. 2011;38(3):353–359.
Høybye MT, Johansen C, Tjønhøj-Thomsen T. Online interaction. Effects of storytelling in an internet breast cancer support group. Psychooncology. 2005;14(3):211–220.
Barlett YK, Coulson NS. An investigation into the empowerment effects of using online support groups and how this affects health professional/patient communication. Patient Educ Couns. 2011;83(1):113–119.
Blackburn C, Read J. Using the Internet? The experiences of parents of disabled children. Child Care Health Dev. 2005;31(5):507–515.
Gunderson T. ‘One wants to know what a chromosome is’: The internet as coping resource when adjusting to life parenting a child with a rare genetic disorder. Sociol Health Illn. 2011;33(1):81–95.
Tozzi AE, Mingarelli R, Agricola E, et al. The internet user profile of Italian families of patients with rare diseases: a web survey. Orphanet J Rare Dis. 2013;8:76.
Schaffer R, Kuczynski K, Skinner D. Producing genetic knowledge and citizenship through the Internet: mothers, pediatric genetics, and cybermedicine. Sociol Health Illn. 2008;30(1):145–159.
Skinner D, Schaffer R. Families and genetic diagnoses in the genomic and Internet age. Infants Young Child. 2006;19(1):16–24.
da Rocha Garbin HB, Faria Pereira Neto A, Guilam MCR. The internet, expert patients and medical pracitice: an analysis of the literature. Interface (Botucatu). 2008;12(26).
Buchanan H, Coulson NS. Accessing dental anxiety online support groups: an exploratory qualitative study of motives and experiences. Patient Educ Couns. 2007;66(3):263–269.
Campbell HS, Phaneuf MR, Deane K. Cancer peer support programs – do the work? Patient Educ Cons. 2004;55(1):3–15,