The Information Needs and Experiences of People Living with Cardiac Implantable Electronic Devices: A Qualitative Content Analysis of Reddit Posts.

Abstract

Cardiac implantable electronic devices (CIEDs) are used to treat a range of cardiovascular diseases and can lead to significant clinical improvements. However, studies evaluating patient experiences of living with these devices are sparse and have focused mainly on implantable cardioverter-defibrillators (ICDs). Additionally, there has been limited evaluation of how people living with a CIED utilize social media to gain insight into their condition. This study aimed to analyze posts from online communities called subreddits on the website Reddit, intended for people living with a CIED, in order to characterize the informational needs and experiences of patients. Reddit was systematically searched for appropriate subreddits, and one was found that could be included in the analysis. A python based web scraping script utilizing the Reddit application programming interface was used to extract posts from this subreddit. Each post was individually screened for relevancy and a register of participant demographic information was created. Conventional qualitative content analysis was used to inductively classify the qualitative data collected into codes, subcategories, and overarching categories. Out of 484 posts collected by the script, 186 were excluded, resulting in 298 posts from 196 participants being included in the analysis. The median (range) age of participants who reported this was 33 (17-72) years old and the majority had a permanent pacemaker (PPM). The content analysis yielded five overarching categories: Use of the Subreddit by Participants, Questions and Experiences Related to the Daily Challenges of Living with a CIED, Physical Sequelae of CIED Implantation, Psychological Experiences of Living with a CIED, and Questions and Experiences Related to Healthcare While Living With a CIED. These categories provided insight into the diverse experiences and informational needs of participants living with a CIED. The data predominantly represented the experiences of younger and more physically active participants. Social media provides a platform through which people living with a CIED may share information and provide support to their peers. Participants generally sought information about the experiences of others living with a CIED. This was often done to help overcome a range of challenges faced by participants including the need to adapt to living with a CIED, difficulties with navigating healthcare, psychological difficulties, and various aversive physical sequelae. These challenges may be particularly difficult for people who are younger and physically active. Healthcare professionals may leverage peer support and other aid to help people overcome the challenges they face while living with a CIED.