在线焦点小组讨论是在有癌症经历的年轻人中调查敏感话题时一种有效且可行的模式。
Online Focus Group Discussion is a Valid and Feasible Mode When Investigating Sensitive Topics Among Young Persons With a Cancer Experience.
作者信息
Wettergren Lena, Eriksson Lars E, Nilsson Jenny, Jervaeus Anna, Lampic Claudia
机构信息
Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.
出版信息
JMIR Res Protoc. 2016 May 9;5(2):e86. doi: 10.2196/resprot.5616.
BACKGROUND
Clinical research often lacks participants of young age. Adding to the small amount of scientific studies that focus on the population entering adulthood, there are also difficulties to recruit them. To overcome this, there is a need to develop and scientifically evaluate modes for data collection that are suitable for adolescents and young adults. With this in mind we performed 39 online focus group discussions among young survivors of childhood cancer to explore thoughts and experiences around dating, being intimate with someone, and having children.
OBJECTIVE
The aim of the study was to evaluate online focus group discussions as a mode for data collection on sensitive issues among young persons with a cancer experience.
METHODS
One hundred thirty-three young persons (16-25 years) previously diagnosed with cancer, participated in 39 synchronous online focus group discussions (response rate 134/369, 36%). The mode of administration was evaluated by analyzing participant characteristics and interactions during discussions, as well as group members' evaluations of the discussions.
RESULTS
Persons diagnosed with central nervous tumors (n=30, 27%) participated to a lower extent than those with other cancer types (n=103, 39%; χ 2= 4.89, P=.03). The participants described various health impairments that correspond to what would be expected among cancer survivors including neuropsychiatric conditions and writing disabilities. Even though participants were interested in others' experiences, sexual issues needed more probing by the moderators than did fertility-related issues. Group evaluations revealed that participants appreciated communicating on the suggested topics and thought that it was easier to discuss sex when it was possible to be anonymous toward other group members.
CONCLUSIONS
Online focus group discussions, with anonymous participation, are suggested to be a feasible and valid mode for collecting sensitive data among young persons with a cancer experience.
背景
临床研究常常缺少年轻参与者。除了针对进入成年期人群的少量科学研究外，招募这类人群也存在困难。为克服这一问题，有必要开发并科学评估适合青少年和青年的数据收集模式。考虑到这一点，我们对童年癌症的年轻幸存者进行了39次在线焦点小组讨论，以探讨他们在约会、与他人亲密接触和生育方面的想法和经历。
目的
本研究旨在评估在线焦点小组讨论作为一种收集有癌症经历的年轻人敏感问题数据的模式。
方法
133名曾被诊断患有癌症的年轻人（16 - 25岁）参加了39次同步在线焦点小组讨论（回复率134/369，36%）。通过分析参与者特征、讨论期间的互动以及小组成员对讨论的评价来评估管理模式。
结果
被诊断患有中枢神经肿瘤的人（n = 30，27%）参与程度低于其他癌症类型的人（n = 103，39%；χ² = 4.89，P = 0.03）。参与者描述了各种健康损害，这与癌症幸存者中预期的情况相符，包括神经精神状况和书写障碍。尽管参与者对他人的经历感兴趣，但与生育相关问题相比，性问题需要主持人更多地引导。小组评价显示，参与者对就建议的话题进行交流表示赞赏，并认为在对其他小组成员匿名的情况下讨论性更容易。
结论
建议匿名参与的在线焦点小组讨论是一种可行且有效的模式，用于收集有癌症经历的年轻人的敏感数据。
Zotero 插件