Uganda Cancer Institute, Kampala, Uganda.
Department of Medical Informatics, Amsterdam Public Health research institute, Amsterdam UMC - Location AMC, Amsterdam, Netherlands.
JMIR Mhealth Uhealth. 2021 Jan 26;9(1):e22061. doi: 10.2196/22061.
Cancer awareness is crucial for cancer care and prevention. However, cancer awareness in Uganda is low, and access to cancer information is limited.
This study aims to (1) understand the cancer awareness situation in Uganda (perceptions, beliefs, information needs, and challenges to accessing cancer information) and opinions about interactive voice response (IVR) systems; (2) develop cancer awareness messages and implement them in an IVR system; and (3) evaluate user acceptance and use of the IVR system.
A participatory design approach was adopted. To understand cancer awareness needs and challenges, 3 interviews and 7 focus group discussions (FGDs) were conducted with cancer health care providers, patients with cancer, caregivers and survivors, administrators, and lay citizens (n=73). On the basis of the resulting qualitative data, audio messages addressing cancer information needs were developed and implemented in an IVR system. The system and messages were tested with users (n=12) during 2 co-design workshops before final rollout. Finally, the system was evaluated over 6 months after going live, using call records and user feedback from telephone interviews with callers (n=40).
The cancer information needs included general topics such as what cancer is, what causes it, cancer screening and diagnosis, cancer treatment, and practical information on what to expect during cancer care. There were also myths and misconceptions that need to be addressed, such as that cancer is due to witchcraft and has no treatment. Information on COVID-19 was also sought after following the outbreak. We developed 20 audio cancer messages (approximately 2 minutes each) in English and Luganda, along with 14 IVR navigation instructions. These were implemented in an IVR system with 24/7 availability from all over Uganda via a toll-free multi-channel telephone number. The total number of calls made to the IVR system 6 months after going live was 3820. Of these, 2437 (63.8%) lasted at least 30 seconds and were made from 1230 unique telephone numbers. There were 191 voice messages and 760 calls to live agents, most of which (681/951, 71.6%) were in Luganda. Call volumes peaked following advertisement of the system and lockdowns due to COVID-19. Participants were generally familiar with IVR technology, and caller feedback was largely positive. Cited benefits included convenience, toll-free access, and detailed information. Recommendations for improvement of the system included adding live agents and marketing of the system to target users.
IVR technology provides an acceptable and accessible method for providing cancer information to patients and the general public in Uganda. However, a need remains for health system reforms to provide additional cancer information sources and improve cancer care services in general.
癌症意识对于癌症护理和预防至关重要。然而，乌干达的癌症意识较低，获取癌症信息的途径有限。
本研究旨在：（1）了解乌干达的癌症意识状况（认知、信念、信息需求以及获取癌症信息的挑战）和对交互式语音应答（IVR）系统的看法；（2）开发癌症意识信息并将其纳入 IVR 系统；（3）评估用户对 IVR 系统的接受度和使用情况。
采用参与式设计方法。为了解癌症意识需求和挑战，我们对癌症保健提供者、癌症患者、护理人员和幸存者、行政人员以及普通公民（n=73）进行了 3 次访谈和 7 次焦点小组讨论。基于定性数据分析结果，我们开发了满足癌症信息需求的音频信息，并将其纳入 IVR 系统。在最终推出之前，用户（n=12）在 2 次共同设计工作坊中对系统和信息进行了测试。最后，在系统上线 6 个月后，通过来电者的电话访谈收集来电者的通话记录和反馈（n=40）对系统进行评估。
癌症信息需求包括一般主题，如癌症是什么、癌症的成因、癌症筛查和诊断、癌症治疗以及在癌症护理期间的预期信息。还存在一些需要解决的误解和错误观念，例如癌症是由巫术引起的，而且无法治愈。在疫情爆发后，人们还寻求有关 COVID-19 的信息。我们用英语和卢干达语开发了 20 个音频癌症信息（每个约 2 分钟），以及 14 个 IVR 导航说明。这些内容都已纳入 IVR 系统，乌干达各地可通过免费的多渠道电话号码在 24/7 提供服务。系统上线 6 个月后的总通话次数为 3820 次。其中，2437 次（63.8%）通话时长至少 30 秒，来自 1230 个唯一电话号码。系统共收到 191 条语音留言和 760 次与人工客服的通话，其中大部分（681/951，71.6%）是卢干达语。系统广告宣传和 COVID-19 封锁导致通话量达到峰值。参与者对 IVR 技术普遍熟悉，来电者的反馈大多是积极的。来电者提到的好处包括方便、免费访问和详细信息。对系统的改进建议包括增加人工客服和针对目标用户推广系统。
IVR 技术为乌干达的患者和公众提供了一种可接受和便捷的获取癌症信息的方法。然而，仍需要进行卫生系统改革，以提供更多的癌症信息来源，并改善整体癌症护理服务。
