Park Bu Kyung, Kim Ji Yoon, Rogers Valerie E
College of Nursing, Research Institute of Nursing Science, Kyungpook National University, Daegu, Republic of Korea.
Department of Pediatrics, School of Medicine, Kyungpook National University, Daegu, Republic of Korea.
J Med Internet Res. 2020 Jul 28;22(7):e18779. doi: 10.2196/18779.
Childhood cancers previously considered to be incurable now have 5-year survival rates up to 84%. Nevertheless, these patients remain at risk of morbidity and mortality from therapy-related complications. Thus, patient education and self-management strategies for promoting a healthy lifestyle are of tantamount importance for improving short- and long-term health outcomes. A Facebook-based "Healthy Teens for Soaam" (a Korean term for childhood cancers) program was developed to help improve knowledge and self-management practices of teens with cancer related to their disease and treatment.
The two-fold purpose of this usability study was (1) to describe the process of developing an 8-week Facebook-based intervention program for teens with cancer, and (2) to evaluate its usability to refine the program.
Multiple phases and methods were employed to develop and evaluate the usability of the program. Study phases included: (1) needs assessment through focus group interviews and qualitative content analysis, (2) development of module content, (3) expert review and feedback on module content, (4) Facebook-based program development, (5) usability evaluation by heuristic evaluation, (6) usability evaluation by targeted end-user testing, and (7) modification and final version of the program. Usability of the final version was confirmed through feedback loops of these phases.
Based on 6 focus group discussion sessions, it was determined that teens with cancer were interested in seeing stories of successful childhood cancer cases and self-management after discharge, and preferred multimedia content over text. Therefore, each Facebook module was redesigned to include multimedia materials such as relevant video clips tailored for teens. Usability assessed by heuristic evaluation and user testing revealed several critical usability issues, which were then revised. Potential end users tested the final program and perceived it to be usable and useful for teens with cancer.
To our knowledge, "Healthy Teens for Soaam" is the first Facebook-based intervention program for teens with cancer. We actively worked with current childhood cancer patients and survivors to develop and improve this program, achieved good usability, and met the expressed needs and preferences of target end users. This 8-week Facebook-based educational program for teens with cancer, developed as the first step of an upcoming intervention study, will be useful for improving knowledge and self-management strategies of teens.
以前被认为无法治愈的儿童癌症现在5年生存率高达84%。然而，这些患者仍面临与治疗相关并发症导致的发病和死亡风险。因此，开展患者教育和自我管理策略以促进健康的生活方式对于改善短期和长期健康结果至关重要。一个基于脸书的“为儿童癌症患者打造健康青少年”（Soaam是韩语中儿童癌症的说法）项目得以开发，旨在帮助提高患癌青少年对其疾病和治疗的认知以及自我管理能力。
这项可用性研究的双重目的是：（1）描述为患癌青少年开发一个为期8周的脸书干预项目的过程，（2）评估其可用性以完善该项目。
采用多个阶段和方法来开发和评估该项目的可用性。研究阶段包括：（1）通过焦点小组访谈和定性内容分析进行需求评估，（2）模块内容开发，（3）专家对模块内容的审查和反馈，（4）基于脸书的项目开发，（5）通过启发式评估进行可用性评估，（6）通过目标最终用户测试进行可用性评估，以及（7）项目的修改和最终版本。通过这些阶段的反馈循环确认了最终版本的可用性。
基于6次焦点小组讨论会议，确定患癌青少年对了解成功的儿童癌症病例故事和出院后的自我管理感兴趣，并且更喜欢多媒体内容而非文字内容。因此，每个脸书模块都重新进行了设计，纳入了多媒体材料，如为青少年量身定制的相关视频片段。通过启发式评估和用户测试评估的可用性揭示了几个关键的可用性问题，随后进行了修订。潜在的最终用户对最终项目进行了测试，并认为它对患癌青少年有用且可用。
据我们所知，“为儿童癌症患者打造健康青少年”是首个基于脸书的患癌青少年干预项目。我们积极与当前的儿童癌症患者及幸存者合作来开发和改进这个项目，实现了良好的可用性，并满足了目标最终用户表达的需求和偏好。这个为期8周的基于脸书的患癌青少年教育项目作为即将开展的干预研究的第一步，将有助于提高青少年的认知和自我管理策略。
