Date of Award

1-1-2013

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Andrea Sellers

Abstract

Social media is a web based technology that allows individuals to communicate with other individuals, organizations, and communities about common interests and experiences. Recently, social media use has expanded into the healthcare field and many individuals are using social media to connect with others in similar situations and find support. Family members of children or pregnancies with trisomy 13, 18, or 21 were invited to participate in an online survey that explored the use of social media as a support network including their purposes for using social media as a support network, how often the use social media, and what information they gain from social media. Data from 94 trisomy 13/18 participants and 77 Down syndrome participants were used for statistical analysis while additional qualitative data was collected through ten telephone interviews. The majority of participants used Facebook (89%), blogs (59%), and pregnancy websites (39%) as their main forms of social media for support. Participants reported using social media for the purposes of gathering information (81%), sharing information (73%), connecting with others in a similar situation (90%) and because of the ease of use (56%). Seventy-nine percent (79%) of participants indicated that information gathered from social media was 'much more helpful' or 'more helpful' than information gathered from their healthcare professional. Qualitative data from the telephone interviews identified various themes related to social media use including the search for support, a sense of community, types of information gained from social media, and viewpoints on the healthcare community. Based on this information, a list of recommendations was created for genetic counselors and other healthcare professionals on how to present social media to families as a support option, including discovering local support options, accessing families thoughts and feelings about using the internet for support, creating a list of appropriate social media and sites, and providing the list to the family at an appropriate time.

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