Using Social Media Listening to Understand the Pressure Injury Experience: A Qualitative Descriptive Study

Background: Pressure injuries (PIs) are a common complication in people with reduced mobility or sensation and can be burdensome for individuals with PIs and their caregivers. Valuable insights and real-world challenges faced by individuals living with PIs can be captured through candid accounts posted on social media. Social media listening (SML) is a tool that can enhance the understanding of those with lived experience by offering firsthand accounts that are irreproducible from controlled studies. Objective: This study aims to capture the candid experiences of individuals with PIs and caregivers through social media. Methods: A noninterventional qualitative descriptive analysis was conducted using SML. Social media posts made on X (formerly Twitter), Reddit, and YouTube between January and December 2022 were compiled using SML tools X Pro (formerly TweetDeck) and Awario, and using Boolean search terms. Posts were manually screened for relevance, and duplicates were removed. Relevant posts were hand-coded by two independent reviewers. Inductive content analysis was used to analyze the posts. Results: The search yielded 666 relevant posts from 498 unique social media users. Most posts were made in the United States (170/666, 25.5%), the United Kingdom (150/666, 22.5%), and Canada (62/666, 9.3%). Social media users provided detailed descriptions of the PIs, including the setting in which the PI occurred, the cause of the PI, and how the PI was managed. The majority of PIs (197/666, 29.6%) were reported to have occurred in the hospital setting due to a perceived lack of care from care providers, and local wound care was often cited (99/666, 14.9%) as a PI management strategy. Three key themes were developed regarding living with or caring for someone with a PI: (1) challenges experienced when living with or caring for a PI, (2) needs related to PI prevention and management, and (3) emotions experienced when living with or caring for a PI. Social media users frequently discussed challenges associated with living with a PI, including negative personal impacts and poor perceived treatment quality. Users also described a critical need for health care, education, and social support. Finally, users often expressed anger and/or sadness related to living with or caring for a PI. Conclusions: SML captured candid insights into the experiences, challenges, and needs of individuals living with PIs and their caregivers globally that may not be gleaned from controlled studies. Individuals with lived experience and their caregivers often struggled with negative personal impacts regarding their physical health and daily functioning related to PIs, further highlighting the urgent need to address barriers to appropriate PI care. Clinicians and policymakers should consider practices and policies that optimize the delivery of person-centered PI care in order to overcome challenges and needs identified in this study.