JMIR Publications

ABSTRACT

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 PI 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 first-hand accounts that are irreproducible from controlled studies.

Objective:

This study aims to capture the experience of individuals with PI and caregivers through social media.

Methods:

A non-interventional retrospective analysis was conducted using SML. Social media posts made on X (formerly Twitter), Reddit, and YouTube between January and December 2022 were compiled using social media listening 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. Social media users provided detailed descriptions of the PIs, including the setting in which they occurred and how they were managed. 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 healthcare, education, and social support. Finally, users often expressed anger and/or sadness related to living with or caring for a PI.

Conclusions:

SML can be used to describe the experiences of individuals living with PIs. This study provides unique insights into the experiences, challenges, and needs of individuals living with PIs and their caregivers. Findings from this study contribute to a deeper understanding of the PI experience and may be used to inform practices and policies that can optimize the delivery of person-centered care.