Social Media Participation Among Parents and Caregivers of Children With Pulmonary Hypertension

Engagement in social media has risen nearly 60% over the last decade with consumers engaging in social media not only browse social networking websites, but also to share health information, view health-related videos, and contribute to online support groups. For parents and caregivers (PCGs) of children diagnosed with pulmonary hypertension, participation in social media can be one way to associate with others in a similar position as individuals can connect with others around the world and share information. In this study, parental and caregiver involvement was explored through a cross-sectional study utilizing a survey method to evaluate current practices in social media groups. PCGs of over 300 patients from a large pediatric pulmonary hypertension center were approached for participation in the survey via their child’s web-based messaging portal connected to the electronic medical record. The survey was created in REDCap and given to parents electronically or on paper. The survey was comprised of 4 sections covering child demographics, PH medications and hospitalization encounters, social media utilization among PCGs, and the “Big 5 Personality Survey.” Eighteen PCGs completed sections 1–3 of the survey, and 6 PCGs completed the entirety of the survey (sections 1–4). The children represented in the survey had been diagnosed for an average of 5.5 years. Seventy percent of PCGs in the survey reported using social media as a support resource, utilizing 2–5 different social media platforms. PCGs reported feeling overwhelmed, connected, discouraged, depressed, supported, seen, and good when participating. Among respondents, the three highest-scoring personality traits were agreeableness (31.9), conscientiousness (27.2), and openness to experiences (26.7). This is the first study that seeks to understand social media’s role as a support resource and its impact on PCGs of children diagnosed with pulmonary hypertension. It offers insight as to why PCGs may utilize social media platforms and emphasizes its significant role as a support resource for these families. Healthcare teams should consider evaluation of social media and support its role as a resource and source of education.