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BACKGROUND A family support group for patients with primary malignant brain tumors in our hospital is called “Brain Tumor Family Table.” We conduct regular meetings, such as 30 minutes of medical lectures and 60 minutes of healthcare discussions, between participants and medical staff which is supervised by a nurse. To provide more effective family support, we report our activities. METHOD A total of 96 family members participated in 11 meetings from July 2015 to March 2019 and answered anonymous questionnaires about their participation. This survey evaluated their motivation for participation and the level of satisfaction toward the lectures and discussions by three-level scores and free description. RESULT Regarding the reason of their participation, 28.1% of the participants answered, “I want to talk to someone who is in the same condition.” We found that 83.3% of them were satisfied with the lectures, and 89.6% of them were satisfied with the discussions and conversations. The reasons for their satisfaction were: “I was happy to hear the story of other patients” (19.0%), “I feel positive toward patient care” (19.0%), and “I realized I was not alone” (17.2%). Moreover, 92.7% answered “I would like to participate in the next meeting.” Among them, 26.1% answered “I want to talk again,” 14.2% answered “I feel stable,” and 14.2% answered “I can get information.” There were other opinions, like “Sharing feelings is important” and “I would like to help others next time,” as well. DISCUSSION Malignant brain tumors are orphan cancers, and patients and their families lack the information about the disease and the chance to share their experiences. Hence, participants were quite satisfied with this meeting. We will improve our facilitating skills as an organizing body so that participants can share their experiences and feelings to reduce their loneliness and finally feel positive toward patient care. |
