Universität zu Köln

Titgemeyer, S. C. ORCID: 0000-0002-9638-5114 (2022). Facebook Support Groups for Rare Pediatric Diseases: Quantitative Analysis and Cross-Sectional Study to Investigate Opportunities, Limitations, and Privacy Concerns. PhD thesis, Universität zu Köln.

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Abstract

Background: With affected individuals being widely geographically dispersed, finding an in-person support group can be a challenge. Families therefore turn to social networking platforms such as Facebook for online support groups. Objective: We aim to provide a comprehensive quantitative analysis of the extent of Facebook usage as a tool for rare pediatric disease support groups and to put into perspective the opportunities Facebook offers by investigating its use, advantages, and limitations including privacy concerns. Methods: Rare pediatric diseases listed on Orphanet were searched on Facebook. Disease- and group-describing parameters were analyzed using standard descriptive statistical methods. Members of 12 Facebook groups were invited to a cross-sectional online survey. Results: 6398 Facebook support groups, representing 826 diseases (19.5% of all searched diseases), were found. Group type, size, activity, new memberships, language, and privacy setting varied largely between groups. Of 231 respondents 91.3% were parents (183 mothers, 27 fathers). 59.7% reported a self-initiated search, 24.2% received recommendations from their health professionals, and 12.6% from someone else affected by the disease. On average, members visited and passively participated several times a week, and participated actively once a month. Group members expressed more concern about privacy issues on Facebook in general than in their respective Facebook support groups. Conclusions: Facebook is widely used for support groups for rare pediatric diseases and enhances support group accessibility. Members perceive a reduction and elimination of distance, and the groups create an environment of perceived privacy which results in sharing personal information and pictures. It is important to discuss and protect children's privacy rights in this context. Health professionals can use these results to inform affected persons about Facebook as a tool for support groups in their counseling.

Item Type:	Thesis (PhD thesis)
Creators:	Creators Email ORCID ORCID Put Code Titgemeyer, S. C. sarahtitgemeyer@aol.com orcid.org/0000-0002-9638-5114 UNSPECIFIED
Contributors:	Contribution Name Email Corrector Schaaf, C. P. Christian.Schaaf@med.uni-heidelberg.de Corrector Görtz-Dorten, A. anja.goertz-dorten@uk-koeln.de
URN:	urn:nbn:de:hbz:38-702129
Date:	19 March 2022
Language:	English
Faculty:	Faculty of Medicine
Divisions:	Faculty of Medicine > Humangenetik
Subjects:	Medical sciences Medicine
Uncontrolled Keywords:	Keywords Language Facebook support group English online support English parent support English pediatric rare diseases English social media English support group English privacy paradox English counseling English rare diseases English
Date of oral exam:	4 April 2023
Referee:	Name Academic Title Schaaf, C. P. Universitätsprofessor Görtz-Dorten, A. Professorin
Refereed:	Yes
URI:	http://kups.ub.uni-koeln.de/id/eprint/70212