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亚洲国家乳腺癌幸存者获取和寻求信息的挑战:一项定性研究。

Challenges in Obtaining and Seeking Information Among Breast Cancer Survivors in an Asian Country: a Qualitative Study.

机构信息

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.

出版信息

J Cancer Educ. 2024 Aug;39(4):383-390. doi: 10.1007/s13187-024-02421-0. Epub 2024 Mar 26.


DOI:10.1007/s13187-024-02421-0
PMID:38530598
Abstract

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.

摘要

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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Challenges in Obtaining and Seeking Information Among Breast Cancer Survivors in an Asian Country: a Qualitative Study.

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引用本文的文献

[1]
Managing uncertainty: A grounded theory study of restoring normality in young and middle-aged patients with lymphoma.

Int J Nurs Sci. 2025-6-18

[2]
Qualitative study on the characteristics and dilemmas of eHealth literacy among family caregivers of breast cancer patients.

Digit Health. 2025-5-26

[3]
Information Seeking Behaviors and Preferences of Cancer Survivors: A Cross-sectional Study in Shanghai, China.

J Cancer Educ. 2025-5-26

[4]
The Experience of Patients with Endocrine Therapy for Breast Cancer: A Patient Journey Map Based on Qualitative Research.

Curr Oncol. 2024-9-30

本文引用的文献

[1]
Factors influencing five-year adherence to adjuvant endocrine therapy in breast cancer patients: A systematic review.

Breast. 2022-4

[2]
Young Women with Breast Cancer in Resource-Limited Settings: What We Know and What We Need to Do Better.

Breast Cancer (Dove Med Press). 2021-12-2

[3]
Impact of language preference and health literacy on health information-seeking experiences among a low-income, multilingual cohort.

Patient Educ Couns. 2022-5

[4]
Interventions to support shared decision making for medication therapy in long term conditions: A systematic review.

Patient Educ Couns. 2019-8-28

[5]
Aromatase inhibitors: The unexpected breast cancer treatment.

J Geriatr Oncol. 2020-4

[6]
Breast cancer survivors' experiences of dealing with information during and after adjuvant treatment: A qualitative study.

J Clin Nurs. 2019-5-2

[7]
"I just googled and read everything": Exploring breast cancer survivors' use of the internet to find information on complementary medicine.

Complement Ther Med. 2017-8

[8]
An assessment of patient waiting and consultation time in a primary healthcare clinic.

Malays Fam Physician. 2017-4-30

[9]
Breast cancer patients' information needs and information-seeking behavior in a developing country.

Breast. 2016-8

[10]
Tangled in the breast cancer web: an evaluation of the usage of web-based information resources by breast cancer patients.

J Cancer Educ. 2013-12

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