社群網站於糖尿病照護的應用—以第一型糖尿病青少年之經驗為例

Abstract

第一型糖尿病（以下簡稱T1DM）是好發於兒童及青少年時期的疾病，目前僅能依賴外界注射胰島素以維持生理機能，並且需要謹慎地血糖管理以避免併發症。而過往研究多發現T1DM青少年族群的血糖表現不佳，且有疾病適應和社會心理關懷的需求，因此，瞭解T1DM青少年族群的疾病與生活狀態，並發展所需服務極具重要性。近年來，國外已有多項研究探討糖尿病社群網站於疾病管理、情感支持、社會支持的有效性及風險，而台灣至今尚未有針對糖尿病友使用社群網站的相關討論。據此，本研究將作為一個台灣糖尿病社群網站的初探，旨在瞭解T1DM青少年的生活經驗、需求及未來服務可加強服務之處，並探討糖尿病社群網站應用於第一型糖尿病青少年照護的可行性與建議。本研究採混合研究法。首先，針對7名15至20歲的T1DM青少年受訪者進行個別訪談以探討受訪青少年之生活經驗，並了解受訪青少年對糖尿病社群網站(Facebook)的評價與建議；其次，是以立意取樣選擇六種不同成立背景且正在活躍中的粉絲專頁進行內容分析。取用資料為2019年1月1日至2019年3月25日的貼文、留言、按讚數量及分享數量，以了解粉絲專頁的現況及特色。研究發現，隨著T1DM青少年疾病自我照顧能力提升，其需求會朝向建立內在力量以及外在支持邁進，凸顯出未來服務應加強T1DM青少年正向心理建設、增強家庭良好互動關係，並連結學校和社會宣導改善疾病汙名。但是目前台灣社群網站的經營模式尚侷限在醫療疾病資訊的討論，無法全然滿足T1DM青少年的需求。綜合上述，本研究建議社群網站經營必須考量T1DM青少年的需求，且納入社會工作者於資源連結、家庭溝通、團體關係營造、社會心理支持訓練等專業能力，推動以「生活管理」的思維經營社群網站，並重視生活樣態和生活品質於糖尿病照護的重要意涵。最後，歸納四項結論：（一）以系統觀點分析T1DM青少年的需求能夠發展全人照護的方案；（二）社群網站應結合社會工作的價值理念，有助於完善全人照護；（三）提升社群網站的凝聚力、信任度以增加社群活躍性；（四）訂定團體規範有助於減少錯誤資訊流通，更加鞏固社團品質。

Background：Type one diabetes mellitus (T1DM) is an illness mainly occurring in children and adolescents. Patients with T1DM are usually dependent on supplemental insulin to maintain physiological function, and they also have to keep blood sugar management carefully in order to avoid complications. According to previous studies, adolescents with T1DM usually have poor glucose meter performance; in addition, their needs on illness adaptation and psychosocial care should be carefully concerned. Accordingly, it is essential to understand the illness and life status of adolescents with T1DM, and to develop services that fit their needs. For the past few years, international studies have begun to explore the effectiveness and risk of diabetes social networking sites in terms of illness management, emotional support, and social support. However, there has been no academic discussion about that in Taiwan. Thus, this study will serve as a preliminary study of diabetes social networking sites in domestically. Purpose：This study attempts to explore the life experience and needs of adolescents with T1DM, and try to provide feasible and constructive suggestions on how to use social networking sites (Facebook) as a holistic healthcare service for adolescents with T1DM. Method：Mixed research method is adopted in this study. The first method is individual interviews. Seven adolescents with T1DM aged 15 to 20 were interviewed to explore their life experiences and their evaluations of social networking sites. The second method is content analysis. By purposive sampling, the author chose six active Facebook fan pages with different establishment backgrounds in Taiwan to analyze their respective current situations and characteristics, including the overall amount of posts, comments, “likes”, shares, and the content of posts, comments that were between January 1, 2019 and March 25, 2019. Results：The study found that as the self-caring capacity of adolescents with T1DM enhance, their needs would move toward building up their inner strength and external support. The results point that strengthening positive psychological construction, enhancing favorable family interaction, and removing illness stigma in schools and society are crucial services for adolescents with T1DM. However, a limitation presently is that diabetes social networking sites in Taiwan mainly focus on medical information, which cannot completely meet the needs of adolescents with T1DM. Therefore, this study suggests that the operation of the social networking sites must link social workers' professional abilities, including resource connection, family communication, group relationship building, social and psychological support training, which are relevant issues with adolescents with T1DM. The author suggests that transforming the concept from “illness management' to 'life management” in social networking sites is the key point to attach importance of lifestyle and life quality to diabetes care. Conclusion：The conclusion can be spilt into four points as follows: (1) Analyzing the needs of Adolescents with T1DM from a systematic perspective is conducive to developing holistic healthcare programs. (2)Social networking sites management in combination with social work values and expertise would ameliorate the holistic healthcare. (3)Increasing the cohesiveness and trust would enhance activeness in social networking sites. (4) Establishing group norms would help to reduce fake information and strengthen the quality of the social networking sites.