Haughey Marketa, Neyens David M, Hopkins Casey S, Gonzaga Christofer, Harman Melinda
Department of Bioengineering, Clemson University, Clemson, SC, United States.
Department of Industrial Engineering, Clemson University, Clemson, SC, United States.
JMIR Hum Factors. 2025 Mar 6;12:e66634. doi: 10.2196/66634.
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 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, people who have undergone ostomies perform critical self-care tasks including frequent ostomy appliance changes and stomal and peristomal skin maintenance.
The purpose of this study was to systematically assess YouTube videos narrated by people who have undergone ostomies about their ostomy self-care in home (nonhospital) settings with a focus on identifying end user needs and different strategies used by people who have undergone ostomies during critical self-care tasks.
Using predefined search terms and clear inclusion and exclusion criteria, we identified YouTube videos depicting narrators who have undergone ostomies and their ostomy self-care in home settings. Using a consensus coding approach among 3 independent reviewers, all videos were analyzed to collect metadata, data of narrators who have undergone ostomies, and specific content data.
There were 65 user-generated YouTube videos that met the inclusion and exclusion criteria. These videos were posted by 28 unique content creators representing a 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. Narrators who have undergone ostomies discussed various expert tricks and tips to successfully combat these challenges.
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 revealed that people who have undergone ostomies are willing to share their personal experience with ostomy self-care on the web and that these videos are viewed by the public. User-generated videos demonstrated a variety of supplies used, end user needs, and different strategies for performing 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.
社交媒体平台YouTube是公认的健康信息教育资源，但很少有研究探讨其在传达慢性病患者的生活经历以及终端用户与医疗设备技术互动方面的价值。我们的研究探讨了造口患者的自我护理策略和终端用户需求，因为患者教育和参与造口自我护理对于避免造口相关并发症至关重要。造口手术在腹部创建一个造口（开口），以改变消化和泌尿器官排泄物进入可分离的外部造口袋系统的路径。出院后，接受造口手术的人要执行关键的自我护理任务，包括频繁更换造口袋以及护理造口和造口周围皮肤。
本研究的目的是系统评估由接受造口手术的人讲述的关于他们在家（非医院）环境中造口自我护理的YouTube视频，重点是确定终端用户需求以及接受造口手术的人在关键自我护理任务中使用的不同策略。
使用预定义的搜索词以及明确的纳入和排除标准，我们确定了描绘接受造口手术的讲述者及其在家中进行造口自我护理的YouTube视频。通过3名独立评审员采用共识编码方法，对所有视频进行分析，以收集元数据、接受造口手术的讲述者的数据以及特定内容数据。
有65个用户生成的YouTube视频符合纳入和排除标准。这些视频由28位不同的内容创作者发布，他们代表了广泛的年龄范围，使用了各种用品。讨论的常见挑战包括造口周围皮肤并发症、造口袋粘贴不充分及随后的渗漏，以及与用品相关的挑战。接受造口手术的讲述者讨论了各种成功应对这些挑战的专家技巧和窍门。
本研究采用了一种新颖的方法来深入了解终端用户在进行造口自我护理时与医疗设备的互动情况，而这是使用传统行为技术难以获得的。分析表明，接受造口手术的人愿意在网上分享他们造口自我护理的个人经历，并且这些视频被公众观看。用户生成的视频展示了使用的各种用品、终端用户需求以及进行造口自我护理的不同策略。未来的研究应考察这些发现如何与医疗保健专业人员和组织生成的YouTube造口自我护理内容以及造口自我护理指南相关联。
