Pediatric Pulmonologist University of Wisconsin School of Medicine and Public Health Madison, Wisconsin, United States
Background: Many caregivers of pediatric patients use social media to learn about their child’s health condition(s). Little is known about caregivers of pediatric pulmonary patients’ use of and preferences for social media. Objective: To understand the experience and perspective around social media use by caregivers of children with respiratory conditions. Design/Methods: We recruited caregivers of pediatric pulmonary patients between March 2021 and February 2022 for virtual qualitative focus groups. Semi-structured questions were used to explore their current use of social media, perceived benefits and challenges around social media use to gain health information, and opinions about their child’s medical teams’ use of social media. Focus groups were audio and video recorded and transcribed. Transcripts were analyzed in the grounded theory tradition using the constant comparative method. Results: Participants included 25 caregivers (mean age 40.92, SD 8.71 years; 96% female); 96% of whom reported using social media. Four major themes emerged as a part of caregivers’ lived experience that intersected with social media. The first theme was feeling isolated. One participant said, “Our own family members don't understand what we're dealing with…and you feel disconnected, and you feel almost alone as a parent, because you don't have anyone else to talk to about it.” The second theme was facing unique challenges. One participant said, “We kind of use social media for that reason too because what they have is so rare.” The third theme was building community. One participant said, “I personally have had connections with the small amount of parents that have the same actual lung diagnosis with their kids.” The fourth theme was seeking credible information. One participant said, “There's things that I might see on social media, and even just the internet in general for that matter, that I am going to check more than one source, but especially from social media.” See Table 1 for more illustrative quotes.
Conclusion(s): Participants described social media's involvement in building community and seeking credible information for caregivers of children with rare conditions. Pediatric pulmonary teams should consider utilizing social media to improve connection with and among caregivers, as well as provide timely and accurate medical information.
