Date of Award

2014

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Andrea Sellers

Abstract

Cystic fibrosis (CF) is the most common, life-limiting autosomal recessive condition disorder of Caucasians. CF is a chronic condition that requires daily treatment of symptoms, the stress of which can have mental health consequences. Due to the potential for cross contamination of bacterial infections, individuals with CF are discouraged from meeting in person and must find other venues to receive support. Social media provides the opportunity for individuals with CF to communicate and provide support. We hypothesized a positive correlation between the patients' health-related quality of life and the amount of time spent on CF-related social media sites. We expected to see a positive correlation between the amount of time these patients spend on CF-related social media sites and their perceived value of these sites for CF-related emotional support. A quantitative survey was posted on social media sites with the intention of identifying trends between the patient's use of social media and their emotional wellbeing. Data from 103 adult participants with CF were used for statistical analysis while additional qualitative data was collected through 15 telephone interviews. Ninety-seven percent of participants reported using social media sites on average less than two hours per week, including Facebook groups (96%), blogs (38%), and online support groups (37%). The majority of participants (85%) were actively posting on these sites. Qualitative data was coded and analyzed using grounded theory methods. Qualitative analysis identified five major themes: (1) choice of social media sites (2) feelings of isolation due to CF; (3) use of social media for medical information; (4) emotional support using social media; and (5) negative experiences using social media. Results indicated that individuals with CF are actively using social media sites for support related to their CF and there is a positive emotional response to social media with increased use and interaction (p < 0.001). The most statistically significant influential factors of the use of social media and level of interaction on these sites are the patient's perceived treatment burden (p = 0.001) and physical symptoms related to CF requiring therapy, such as the amount of chest therapy (p = 0.002).

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