The Information Needs and Experiences of Cardiac Implantable Electronic Device Caregivers: A Qualitative Analysis of Social Media Data

Although cardiac implantable electronic devices (CIEDs) significantly improve physiological and mortality outcomes, both patients and their caregivers can experience considerable psychosocial distress. This study aimed to characterise the information needs and experiences of CIED caregivers discussed on a social media platform. Data were systematically collected using a Python-based script that filtered for CIED caregivers' posts to the social media platform Reddit based on predefined keywords. Reflexive content analysis was used to analyse and describe the data. From 2138 posts collected, 190 posts from 151 caregivers were identified after filtering and screening. Included caregivers most often cared for fathers or husbands, who typically had pacemakers and a median age of 67 years (IQR = 30). Four categories described the main topics of caregivers' discussions: Concerns about the health of patients (79% of users), Managing and coping with patients' lives and deaths (75%), The difficulties of being a caregiver (62%), and Engagement with healthcare (41%). This study highlights that CIED caregivers using social media reported substantial burdens and challenges, adopting social media as a source of support. Given the parallels with caregivers of other patient populations, the findings demonstrate the need for healthcare guidelines, policies, and practices to support CIED caregivers.