Between May and June 2023, comprehensive searches were conducted on Reddit and YouTube using Awario. Searches were simultaneously conducted on X using X Pro. Awario and X Pro enable users to search web-based platforms for phrases and keywords in public posts in a similar manner to a literature search [38,39]. Both Awario and X Pro identified English-language posts made between January 1 and December 31, 2022. X, Reddit, and YouTube were selected as popular open-access social media websites where users commonly share personal opinions and experiences, enabling us to feature the perspectives of a wide range of individuals. Predefined Boolean search strings were used to identify relevant posts on each social media platform, and Boolean operators (AND/OR) were used to combine each keyword within the strings (Multimedia Appendix 1). The search string included key terms related to pressure injury and alternate words for pressure injury, such as “bedsore” and “pressure ulcer,” as well as care recipients’ or caregivers’ identities (ie, grandparents, parents, sister).

A “user” or “social media user” referred to individuals with lived experience (ie, individuals who had experience living with a PI), caregivers (ie, individuals who provided direct, unpaid care to someone with a PI), or observers (ie, individuals who were not explicitly a caregiver but had witnessed someone else’s PI experience as their friend or relative) who posted content on social media. Observers were distinguished from caregivers by their level of participation in providing PI care: caregivers explicitly provided care for someone with a PI, whereas an observer did not provide direct care for an individual with a PI but appeared to be actively involved in the life of an individual with a PI (eg, friend, colleague, or family member). A “post” was defined as any social media content identified through the search. A “mention” was defined as a reference to a specific topic within posts, which was used for coding in the analysis.

Social media posts from X, Reddit, and YouTube were included for analysis if they were written or recorded in English by individuals with lived PI experience, caregivers, or observers. In order to be included in the study, the social media post had to contain content relating to personal experiences with PIs (ie, experiences of living with a PI, caring for someone with a PI, or observations of another person’s experience with PIs). There were no restrictions in terms of the user’s geographic location.

Posts were excluded if they mentioned the development of a PI from medical masks or if the user did not fit the definition of an individual with lived PI experience, caregiver, or observer. Posts were also excluded if the user was a paid caregiver or health care professional (HCP) and if the post contained product endorsements or advertisements.

The results of each Boolean search were entered into a Microsoft Excel spreadsheet. Each X, Reddit, and verbatim transcript of the YouTube post was manually reviewed for relevance based on the inclusion and exclusion criteria before being input into a separate spreadsheet for content analysis. Any posts that did not meet the inclusion criteria or the exclusion criteria (eg, product endorsements) were removed. Duplicate posts that contained identical text were identified using the sort function of the spreadsheet and removed manually by researchers. To ensure interplatform data consistency, we applied common inclusion and exclusion criteria across platforms. Screening and verbatim transcription were performed in duplicate by two independent researchers to enhance trustworthiness.

Users’ relationships with individuals living with a PI, geographic location, and intended audience were documented whenever such information was available from the users’ social media profiles or could be inferred from the posts. Otherwise, users were classified as “unknown.” Post details including the posting date, retrieval date, source platform (ie, X, Reddit, or YouTube), post format (ie, video, forum post, or tweet), and post hyperlinks were also documented on a Microsoft Excel spreadsheet.

Segments of text within each social media post were assigned a label (ie, code). Given that multiple segments of text within each social media post may have been present, social media posts were often assigned more than one code. Summative content analysis was used [40,41] through inductive coding; theme generation; and code, subcode, and theme frequency measurement.

Inductive coding was used to formulate a comprehensive codebook. Primary codes, corresponding subcodes, example posts for reference, and code definitions were determined through an iterative process. The initial creation of codes and subcodes was performed independently by four research team members (PM, Pilar Tabuenca [PT], Uchechukwu Akunna [UA], and SG) based on post content, and the final codebook was developed following an exhaustive discussion by the team and the refinement of initial codes and subcodes. Disagreements were resolved through a discussion between coders or by an additional coder, if needed. Codes and subcodes were assigned to the relevant posts on a Microsoft Excel spreadsheet. Emotion codes were assigned to each post based on Plutchik’s emotion wheel [42], which identifies eight primary emotion codes—joy, trust, fear, surprise, sadness, disgust, anger, and anticipation—along with their combinations. To ensure the reliability of the coding, these code assignments were later double-checked by four independent researchers (AI, AAO, IT, and JZS) and input into NVivo 12 (QSR International), a qualitative data management software.

The codes and subcodes were then consolidated into major themes representing the experiences of individuals with lived PI experience as reported on social media following further discussion by the research team. Posts were double coded under the same theme when they reflected multiple aspects of the theme; for instance, posts often described both personal impacts and perceived quality of treatment that were encountered while caring for a PI, which both fell under the theme of “Challenges experienced when living with or caring for a PI.” As a result, the number of mentions (ie, codes) per theme surpassed the number of total posts in some cases.

Code, subcode, and theme frequencies were calculated using NVivo 12. Frequency was similarly calculated and summarized for users’ demographic information (ie, geographic location, intended audience, and relationship to the individual living with a PI).

The most frequently mentioned perceived challenge related to PIs was the personal impact of living with a PI or caring for someone with a PI; most mentions involved challenges associated with complications of PIs, such as infection and death. Previous work notes that individuals living with PIs have an estimated two times higher risk of mortality compared with individuals living without PIs, often due to the development of severe infections [45]. Individuals with PIs are at high risk for bacteremia, which can cause a mortality of over 50% [46]. The findings from this work may help guide the development of strategies to help address this concern among those with lived PI experience.

Social media users frequently mentioned the negative impacts of PI on the daily, physical, occupational, or general functioning of individuals living with PIs. Previous studies on caregivers and those living with PIs identified similar experiences, with individuals reporting a reduction in mobility, independent movement, and quality of life [47-49]. A recent systematic review found that individuals living with PIs often demonstrated declines in physical function and activity, along with low quality of life scores [50]. These deficits are exacerbated by PI complications, such as pain and odor, which may impede the performance of physical and social activities [50]. In alignment with best practices for PI prevention and management, a holistic interprofessional approach should be used to address not only the PI but also the complications of living with a PI to help optimize outcomes.

Perceived poor quality of treatment related to PI management by HCPs or caregivers was reported by social media users. Posts often mentioned poor attitudes of HCPs and caregivers and neglect of the individual with lived PI experience, leading to increased pain experienced by the individual with lived experience, the development or worsening of a PI, infection, and even death. Other studies have highlighted negative attitudes of HCPs toward PI prevention and/or management as well as HCPs who engage in inadequate PI care practices [51-55]. These deficits in practice are potentially related to reported low levels of knowledge of HCPs related to PI prevention and management [56-60]. This sentiment was shared by social media users in this study who reported a lack of HCP knowledge related to PI management.

According to the knowledge, attitudes, and practices model, knowledge may correlate with attitudes and health practices [61,62]. Thus, the reported lack of knowledge among HCPs may have also contributed to the reported negative attitudes and suboptimal care practices reported by social media users in this study. This is supported by previous studies investigating nurses’ attitudes and perceived barriers toward PI prevention and management, which found that inadequate nurse training and knowledge were major obstacles contributing to their negative attitudes and inadequate practices [7,63,64]. Since low knowledge about PI may lead HCPs to adopt poor attitudes and health care practices, the need to ensure that HCPs receive sufficient training in PI prevention and management should be considered.

In addition to a lack of training and knowledge, HCPs have cited a lack of time and equipment (ie, pressure-relieving devices) as prominent perceived barriers to care delivery [51,65-67]. Other studies have found that staffing shortages and inadequate HCP training were persistent barriers to PI prevention practices [68-71]. These findings align with results from the present study, as social media users commonly identified health care system issues, including staffing shortages and lack of availability of equipment (eg, specialized mattresses). Health care system–related barriers appear to be shared globally, and future initiatives should ensure that equipment for PI prevention and management is accessible in order to optimize health outcomes for individuals living with PIs.

HCPs play a pivotal role in ensuring that the health care needs and goals of the person living with the PI are met [72,73]. Therefore, it is not surprising that the most frequently mentioned need identified by social media users was health care support related to managing PIs. Although best practice guidelines include self-management where people living with PIs assume responsibility for their PI [74], the frequent sentiment of social media users was the need for health care support, highlighting the limitations of self-management alone. Additionally, users often reported a continued need for HCP support, suggesting the need for ongoing provision of services. One potential contributor to the prevalent need for support may be the inaccessibility of PI resources. Previous studies have demonstrated that individuals seeking specialized medical care experience barriers related to long wait times and high treatment costs, making it exceptionally challenging to obtain relevant services [75,76]. Thus, these barriers may impact individuals’ access to satisfactory PI care, driving their self-reported need for health care support.

Social media platforms provide a resource for individuals seeking guidance on managing their illnesses, allowing them to benefit from the advice and experiences shared by others [77,78]. As such, our study found that one of the most commonly expressed needs of individuals living with PIs was their request for advice and information regarding PIs. Social media can be beneficial as an educational resource because authentic accounts of an individual’s illness can make medical information more relevant to the user’s situation and help them to better understand it [78]. However, given the large volume of information available on the internet, the quality of information can vary widely [79] depending on its source and other post characteristics (eg, length of the post, author credentials). A study evaluating the quality of health information shared on online discussion forum websites, such as Reddit, found that posts shared by medical doctors were “of reasonably good quality” [80]. A recent study by Bang et al [81] that examined the quality of PI health information on YouTube found that longer videos produced by a physician and other health personnel contained more accurate and reliable information about PI prevention and management. In contrast, health information on X may not be reliable: a recent retrospective cohort study revealed that X users were approximately 974 times more likely to encounter inaccurate than accurate information about monkeypox [82]. Similarly, another study found that while authenticated authors on X with large followings were more likely to produce accurate posts about COVID-19, over 25% of the posts were inaccurate, indicating that this information may not be reliable for educational purposes [83]. Future studies should evaluate the quality of PI health information on various social media platforms and elucidate the factors impacting information quality to provide guidance for users regarding where and how to obtain reliable and accurate information.

Social media serves not only for sharing individual experiences but also for offering and receiving support [78]. In our study, social support emerged as a frequently mentioned need, which aligns with previous study findings that many caregivers of adults with cancer expressed a desire for social support in the form of prayers and patient visitation [84]. Individuals living with PIs are particularly vulnerable to social isolation due to the challenges associated with immobility and body image issues due to characteristics of PIs such as exudate and malodor [7,85]. Hence, social media may be a valuable resource for those living with PIs, allowing them to connect with others who can offer support. This notion is further supported by a study on social media use among adults during the COVID-19 pandemic, which highlighted how social media platforms can be major sources of social support amid isolation, ultimately aiding in the reduction of loneliness [86]. Future work should consider developing interventions to address the social isolation that individuals living with PIs may face.

In this study, anger, sadness, and a combination of the two emotions were the most frequently cited among social media users. This aligns with previous research findings that individuals with lived PI experience and caregivers often feel negative emotions such as anger, frustration, and sadness due to the lengthy healing process of PIs, lack of care received, and PI symptoms such as pain [7,32,50,87-89]. In the qualitative study of Latimer et al. [32] that explored the perceptions of individuals with PIs regarding their role in PI prevention, participants reported feeling angry and frustrated about failing to receive appropriate PI preventative care and experiencing negative interactions with HCPs. These findings suggest that the PI experience is often distressing and can incite intense negative emotions in those living with or caring for a PI. However, it is important to note that social media users tend to engage with and share negative emotions and experiences (eg, anger and distress) more frequently than positive ones on these platforms [90-95]. In addition, studies have shown that those in the online health community may be more likely to post negative content to seek emotional and informational support [96,97]. The platform X in particular has been associated with messages displaying highly negative emotions [92]. Given that X was our primary source of data, the potential likelihood of predominantly negative experiences reported on X was high, and as a result, our findings may be skewed. Nonetheless, our findings provide valuable insights into individuals’ experiences living with or caring for a PI, highlighting the negative emotional impact of the pervasive challenges associated with preventing and managing PIs.

Our study identified the candid experiences, challenges, and needs of individuals with PIs and their caregivers, which have several actionable implications for digital health. In this study, individuals living with PIs and their caregivers frequently expressed a need for information and advice regarding PIs and PI care. Additionally, social media users often reported a continued need for HCP support throughout the PI journey, which they lacked access to. These findings suggest that researchers and clinicians should prioritize the development of accessible online PI educational materials or platforms for individuals with PI and caregivers. Online PI resources or platforms (eg, websites, mobile health apps, social media pages) could provide contact information for HCPs or health organizations, enabling individuals with PI and/or their caregivers to access PI information or support when needed. Disseminating critical health information in a centralized and accessible forum may help promote health literacy among individuals with PIs and caregivers who rely on social media sources to supplement knowledge gaps. In addition, given the widespread use of social media today, it may also be useful to develop social media campaigns to educate the general public about PIs to combat general misinformation.

SML allowed us to identify patterns in the experiences and struggles of individuals with PI and their caregivers, such as a perceived lack of adequate PI care received and lack of knowledge among HCPs. These issues may subsequently be targeted and addressed by relevant regulatory or health entities to improve patient experiences and outcomes. As such, we note that SML may be used in the future to complement digital health surveillance technology, as researchers may utilize SML to observe and track ongoing trends in the reported challenges and needs of individuals with PI and caregivers on social media. The information gathered by SML can generate important longitudinal insights into whether prevailing issues are being adequately addressed and what critical areas of health care improvement health care organizations and policymakers should focus on.