Centre for Quality Management of Medicines, Faculty of Pharmacy, Universiti Kebangsaan Malaysia, Jalan Raja Muda Abdul Aziz, 50300, Kuala Lumpur, Malaysia.
Pharmaceutical Services Division, Kuala Lumpur & Putrajaya Health Department, Ministry of Health, Kuala Lumpur, Malaysia.
J Cancer Educ. 2024 Aug;39(4):383-390. doi: 10.1007/s13187-024-02421-0. Epub 2024 Mar 26.
Breast cancer survivors on adjuvant endocrine therapy (AET) have distinct information-seeking experience compared to those in the diagnosis and intensive treatment phase. This study aimed to understand the challenges in obtaining and seeking information among Malaysian breast cancer survivors. We conducted semi-structured, one-to-one interviews among patients using AET from two hospitals and a local cancer organization. Interviews were conducted until theme saturation was achieved (N = 25). Interviews were de-identified, transcribed verbatim, and analysed using thematic analysis. To ensure rigor, coding was conducted through regular discussions between two researchers and the findings were shared with several participants after analysis was completed. Three main themes were identified: limitations in the healthcare system, pitfalls of seeking information online, and limited information from local sources. The participants perceived that their information needs were not met by their healthcare providers and sought information on the Internet to complement their information needs. However, they were faced with risks of misinformation, information overload, and unethical promotion of health products. Those with limited English proficiency had difficulties in accessing quality information, and suggested that there should be more content created by local health advocates in local languages, with information that is tailored for local cultures. As the Internet has become an important medium of health education, healthcare providers and patients should be equipped with the skills to share and search for information online. Digital health literacy needs to be incorporated in patient education modules to create a more informed and empowered patient community.
接受辅助内分泌治疗(AET)的乳腺癌幸存者与处于诊断和强化治疗阶段的患者相比,具有独特的信息寻求体验。本研究旨在了解马来西亚乳腺癌幸存者在获取和寻求信息方面面临的挑战。我们对来自两家医院和当地癌症组织的使用 AET 的患者进行了半结构式、一对一的访谈。访谈一直进行到主题达到饱和(N=25)。访谈内容经过逐字转录并进行了主题分析。为了确保严谨性,通过两位研究人员之间的定期讨论进行了编码,并在分析完成后与几位参与者分享了研究结果。确定了三个主要主题:医疗保健系统的局限性、在线寻求信息的陷阱以及当地来源信息有限。参与者认为他们的信息需求没有得到医疗保健提供者的满足,并在互联网上寻求信息来补充他们的信息需求。然而,他们面临着错误信息、信息过载和不道德的健康产品推广的风险。那些英语水平有限的人在获取高质量信息方面存在困难,并建议当地健康倡导者用当地语言创作更多的内容,并提供适合当地文化的信息。由于互联网已成为健康教育的重要媒介,因此应使医疗保健提供者和患者具备在线分享和搜索信息的技能。数字健康素养需要纳入患者教育模块,以创建一个更知情和更有能力的患者群体。
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