乳癌病患使用部落格的疾病經驗交流之初探

An exploratory study of the use of blogs as a means of communication for breast cancer patients

目標：近年來，癌症病患部落格已是網路傳播中不可忽視之現象，然而以癌症病友為主體的部落格研究，在健康相關領域仍是較新的議題。本研究採用深度訪談並輔以參與觀察法，針對乳癌病患使用部落格對於其疾病經驗的影響進行初步探討。方法：本研究從「抗癌同學會部落格」找出15位乳癌部落客進行深度訪談，同時也針對受訪者以部落格為媒介，與其他病友從事面對面活動，進行參與觀察。結果：乳癌病患書寫部落格的動機，是為了面對疾病以及社會連結；使用部落格對於受訪者疾病經驗的影響，包括交流治療經驗與健康知識、感受情感支持、改變生活與反思生命意義等。部落格所提供的健康資訊，是來自病患親身經歷的治療過程，對病友來說是重要訊息來源；因疾病導致的社會隔離狀態，透過部落格的創作找到相同處境的病友，可以得到心靈慰藉。然而部落格的使用，仍受到社會文化規範和意識型態的影響，對於治療的描述聚焦在西醫，死亡相關議題的討論也有限。結論：對醫療專業人員而言，從病患部落格書寫內容，能瞭解其醫療資訊需求和社會心理反應，未來可以根據疾病不同階段，提供適切的照護知識和社會資源介入，相關政府單位也可以規劃醫療資訊政策，建立友善網路平台，提供最新相關醫藥知識，促進病友間交流與互動。

Objectives: The use of blogs as a means of internet communication is a phenomenon that cannot be ignored. Cancer patient-centered blogs have become an emerging and novel topic for health researchers to study. With in-depth interviews and participant observation, this preliminary study explored the impact of blog usage on the illness experiences of patients with breast cancer. Methods: In-depth interviews were held with 15 breast cancer bloggers from the Cancer Patient Reunion blog, a medium for meeting other breast cancer patients. Results: In order to confront their disease and stay socially connected, breast cancer patients were motivated to create the blog. The blog provided personal experiences of breast cancer treatment and related health information, served as a type of emotional catharsis and social support, and helped the participants reflect on the meaning of life. Personal experiences of the treatment process provided crucial health informa­tion for other patients with breast cancer. By writing blogs, breast cancer patients could comfort each other and alleviate the social isolation due to the illness. Nonetheless, it seemed that the ill­ness narratives were still influenced by social/cultural regulation and ideology, and the treatments described were based mainly on Western medicine. In addition, few death-related topics were dis­cussed on the blog. Conclusions: From the blog content, health care professionals should be able to understand the medical information needs and the psychosocial responses of cancer patients, and thus provide proper health care and social interventions based on the different stages of dis­ease. Furthermore, based on analysis of blog content, appropriate government units can develop good medical and health information policies, create user-friendly websites, and provide updat­ed medical information to help breast cancer patients communicate and interact with each other.