| 摘要: | 罕見疾病患者常因疾病引起的症狀而影響其生活品質，像是患有「先天性軟骨發育不全症」的患者（小小人兒），由於基因的缺陷，小小人兒的體型會較為矮小，造成日常生活中許多的不便。儘管如此，比起其他罕見疾病之症狀，小小人兒的症狀較為輕微，在經過學習之後仍可獨立生活。另一方面，在小小人兒的成長過程中，需要有家屬的照顧和陪伴；因此，患者家屬也需要足夠的資訊以了解如何解決小小人兒日常生活所遭遇的問題。為此，本研究結合多媒體科技和數位遊戲發展一套小小人兒線上生活百科，以幫助小小人兒和患者家屬解決小小人兒日常生活中的問題。更具體的說，多媒體科技可以讓學習者從多樣化的資訊形式中獲取解決小小人兒生活問題的方法；另外，遊戲式線上生活百科的娛樂性和互動性可以讓學習者在愉悅的方式下，了解小小人兒的日常生活資訊。然而，小小人兒為患者的角色，而其家屬則為照顧者的角色，不同的角色對於多媒體和遊戲式線上生活百科可能會表現出不同的反應。故本研究目的為探討小小人兒與患者家屬對於多媒體和遊戲式線上生活百科會有何不同的學習行為、學習動機和學習觀感。
關於多媒體線上生活百科的結果顯示，患者家屬比小小人兒有更好的學習動機。此外，小小人兒偏好使用搜尋引擎找尋具體的資訊；相反的，患者家屬偏好找尋更多額外的資訊。另一方面，小小人兒較注重自身發展的資訊，而患者家屬則需要醫療照護的相關資訊。關於遊戲式線上生活百科的結果中顯示，小小人兒和患者家屬表現出相似的學習動機，但是背景音樂會影響小小人兒與患者家屬的學習觀感。對小小人兒而言，他們認為背景音樂很有趣，而患者家屬覺得背景音樂容易干擾思考。最後，本研究根據兩個線上生活百科的結果，建立了兩個圖形化模型，透過圖形化模型可以幫助學習者、研究者與設計者對開發關於罕見疾病患者生活資訊的系統有更深的了解，並促進相關系統的發展。
;Rare diseases affect patients’ quality of their daily life. For example, people with achondroplasia (i.e., little people) need to face a lot of difficulties in their daily life due to their small bodies. Nevertheless, the symptoms of the little people are not so serious as those of people with other rare diseases. Thus, the little people are still able to look after themselves if proper training is provided for them. On the other hand, the little people with young ages need to be attended by their family. Thus, the little people’s family also need sufficient information so that they can know how to take care of the little people. To this end, this study developed online encyclopedias with multimedia technologies and digital games to help the little people and their family solve problems that they met in their daily life. More specifically, the multimedia technologies provide multiple types of information to sort out problems about little people’s daily life. On the other hand, digital games emphasize on interactivity and entertainment that people can experience when they solve problems related to little people’s daily life. However, the little people and their family play different roles. The little people play as patients while their families are caregivers. In other words, the little people and their families may have different reactions to these two online encyclopedias. To this end, this study aims to investigate how the little people and their family react to the online multimedia encyclopedia (OME) and online game-based encyclopedia (OGBE), in terms of learning behavior, learning motivation and learning perception.
Regarding the results from the OME, the family had better learning motivation than the little people. Furthermore, the little people preferred to use the search mechanism to locate specific information about little people’s daily life while their family preferred to find more information about little people’s daily life. In addition, the little people were concerned with their professional development while the family needs more information about medical care.
Regarding the results from the OGBE, the little people and their family demonstrated similar reactions, in terms of learning motivation and perception, but they had different reactions to the background music. The little people thought that the background music was enjoyable whereas the family indicated that the background music distracted their thinking. Finally, two frameworks are produced based on the results obtained from these two online encyclopedias. These frameworks can be applied to help learners, researchers, and designers to promote the developments of other online encyclopedias for rare diseases. |
