Amplifying the lived experiences of parenteral nutrition consumers through the thematic analysis of social media posts

Abstract

AbstractBackgroundConsumers of parenteral nutrition (PN) and their caregivers use social media to seek advice and support from their peers and to share experiences. We aimed to leverage posts from a social media patient community to identify common lived experiences of consumers of PN to prioritize opportunities for support through advocacy, education, and research.MethodsAnonymous posts with high engagement were collected over 4 months from a PN‐focused social media support group platform. No personal information was collected or analyzed. Post content was reviewed for demographic characteristics. Thematic analysis involved inductive coding to identify content‐based keywords. Keywords were then used to form major themes and subthemes that were then quantified by post counts.ResultsA total of 306 social media posts were analyzed. Most were from adult PN consumers (80.4%) and pertained to home‐based PN (82%). Equivalent number of posts (5%) were from new consumers and those who had not yet started or restarting PN. The analysis revealed 12 major themes with 2–11 subthemes each, spanning medical, nutrition, emotional, and social aspects. The most prevalent theme was “Best practices, care, and safety of PN use” (36.9%), covering posts seeking guidance on line care, personal hygiene, equipment use, and vascular access devices. Others included “Symptoms” (23.9%) and “Patient safety concerns of PN handling by healthcare providers” (16.0%).ConclusionsThe identified themes provide a broader understanding of contemporary shared lived experiences and concerns relevant to PN consumers and their caregivers. Given the evolving nature of daily stressors, periodic reanalysis may be necessary.