JMIR Publications

ABSTRACT

Background:

The social media platform YouTube is a recognized educational resource for health information, but few studies have explored its value for conveying the lived experience of individuals managing chronic health conditions and end-users’ interactions with medical device technology. Our study explores self-care strategies and end-user needs of people living with a stoma (ostomates) because patient education and engagement in ostomy self-care are essential for avoiding ostomy-related complications. Ostomy surgery creates a stoma (an opening) in the abdomen to alter the route of excreta from digestive and urinary organs into a detachable external pouching system. After hospital discharge, ostomates perform critical self-care tasks including frequent ostomy appliance changes and stomal & peristomal skin maintenance.

Objective:

The purpose of this study was to systematically assess YouTube videos narrated by ostomates about their ostomy self-care in home (non-hospital) settings with focus on identifying end-user needs and different strategies and procedures used by ostomates for changing the ostomy appliance and performing self-care.

Methods:

Using predefined search terms and clear inclusion and exclusion criteria, we identified YouTube videos depicting ostomate narrators’ and their ostomy self-care in home settings. Using a consensus building approach among three independent reviewers, all videos were analyzed to collect video content data and data specific to the ostomate experience while changing the ostomy appliance and performing stoma and peristomal skin care.

Results:

There were 65 user-generated, ostomy self-care YouTube videos that met the inclusion and exclusion criteria. These videos were posted by 28 unique content creators representing broad range of ages who used a variety of supplies. The common challenges discussed were peristomal skin complications, inadequate appliance adhesion and subsequent leakage, and supplies related challenges. Ostomate narrators discussed various expert tricks and tips to successfully combat these challenges.

Conclusions:

This study used a novel approach to gain insights about end-user interactions with medical devices while performing ostomy self-care which are difficult to gain using traditional behavioral techniques. The analysis of 65 videos showed that ostomates are willing to share their personal experience with ostomy self-care online and that these videos are used by the public. User-generated videos demonstrated a variety of supplies used, ostomy medical device end-user needs, and different strategies employed by the ostomates to perform ostomy self-care. Future research should examine how these findings connect to YouTube ostomy self-care content generated by health care professionals and organizations and to guidelines for ostomy self-care.