從日常資訊實踐的觀點探討家庭照顧者如何因應失智照顧的困難與挑戰

Abstract

臺灣為因應逐步攀升的失智人口，自2007年起進行長照十年計劃。如今政府已分階段進行長照3.0，多為延續長照2.0的政策方向，並擴大服務對象資格和補充失智照顧量能。失智照顧悲劇卻仍時有所聞，民間團體和相關學者究其原因，推測失智家庭照顧者可能受限於社會價值觀、認知限制資源取用和外部資源不足等因素而難以近用長照資源，減輕照顧壓力。然而回顧文獻，發現鮮少研究以失智家庭照顧者的主觀經驗探討其失智照顧歷程和挑戰，且多數文獻以醫療人員或諮商人員的角度提供建議，容易因照顧者的個人興趣、認知、價值觀、信任感等不確定因素影響。另，衛生福利部指出失智友善社會應具備「友善參與、失智友善居民、友善環境、失智友善組織」四個要素，圖書館應是其中的失智友善組織。故，本研究旨藉日常生活資訊實踐模式探討失智家庭照顧者的照顧挑戰、取用資訊的特徵和尋求外界支持時遭遇的挑戰，並從資訊實踐的角度進一步了解圖書館於失智議題中扮演何種角色。 本研究問題包含：（一）智家庭照顧者面臨的照顧日常情境包含哪些挑戰？（二）失智家庭照顧者在因應挑戰時展現哪些資訊實踐的特徵？（三）失智家庭照顧者資訊實踐的影響因素為何？（四）失智照顧者的資訊實踐模式為何？在失智家庭照顧者資訊實踐的過程中，圖書館的角色為何？（五）失智家庭照顧者對圖書館有何期許？本研究採半結構式訪談法蒐集資料，輔以小型問卷結果協助研究者深入探討訪談特定面向。 本研究結果共分為失智家庭照顧者的日常生活情境、資訊實踐特徵、資訊實踐影響因素，以及受訪者對圖書館的看法與建議。失智家庭照顧者的日常生活情境共有疾病確診與惡化、生活模式重整、就醫活動、照顧支持、藥物管理、飲食問題、人身安全、人際衝突和外部資源使用九個情境，當中共包含6個子情境和28個照顧挑戰。失智家庭照顧者為因應照顧挑戰而產生的資訊活動有資訊尋求、資訊偶遇、資訊分享、資訊使用、資訊擱置和資訊隱瞞。其中，照顧者資訊尋求的特徵為自己主動尋求資訊、監測資訊和請家人代理尋求資訊，尋求資訊的路徑分為以網路為優先、以人際資源為優先和沒有固定資訊管道優先的多重路徑三種。照顧者在資訊使用方面，篩選資訊的特徵為自行多方比較和請益專業人士協助判讀；判斷資訊價值的特徵係以當下是否會使用到特定資訊的標準進行；應用資訊的特徵為協助記憶和將獲取到的資訊用於機構選擇。本研究發失智家庭照顧者的影響因素為照顧者的經驗、知識結構、社會規範、情意因素和外部其他因素。情意因素包含個人價值觀、興趣和情緒感受；外部因素包含資訊特性、治療成本效益和距離限制三者。最後參考Savolainen(2008)日常生活資訊實踐模式，彙整資料分析結果後繪製出失智家庭照顧者的資訊實踐模式，發現兩者有許多相似之處，認為Savolainen(2008)日常生活資訊實踐模式適合用於失智家庭照顧議題之研究。受訪者當中，多數失智家庭照顧者鮮少對圖書館為其服務抱有想法和期待，據點人員則認為圖書館在推動失智友善方面具有極大的價值，並給予相關建議。對圖書館辦理失智友善活動的建議可分為活動辦理方式、異業合作、活動內容設計和活動宣傳幾個面向，而針對圖書館營造失智友善社會的建議包含館藏資源提供、失智資源連結和館員失智友善參與三部分。 根據研究過程和研究成果，本研究針對未來研究和圖書館實務提供建議。未來研究建議包含以家庭為單位招募失智家庭照顧者，比較資源豐富的生活區和資源較為貧乏之偏鄉失智家庭照顧者的日常生活資訊實踐差異，或採量化研究探討失智家庭照顧者日常生活資訊實踐模式中，各要素之間的因果關係。圖書館實務建議方面，本研究提供五項建議：（一）拓展既有圖書館活動的服務對象並深入社區；（二）活動辦理模式可虛實整合或聯合辦理；（三）持之以恆地辦理圖書館服務；（四）培訓館員對失智症的認識與應對症狀的能力，適當之介入形成社會安全網，以及（五）以網路宣傳，或請求相關協會、失智據點、里民辦公室或社區長者常去的政府單位協助宣傳圖書館活動。

Taiwan has implemented a Ten-Year Long-Term Care Plan since 2007 to address its rising dementia population. Currently, the government is moving toward Long-Term Care Plan 3.0, extending the policy direction of version 2.0 while expanding service eligibility and dementia care capacity. Despite these efforts, dementia-related tragedies are still frequently reported; civil groups and scholars suggest that family caregivers may be hindered by social values, cognitive limitations in accessing resources, and insufficient external support, making it difficult to alleviate caregiving pressure. Literature review reveals a lack of research on the subjective experiences of these caregivers regarding their caregiving journeys and challenges, as most studies provide advice from the perspective of medical or counseling professionals, which are often influenced by the caregiver's personal interests, cognition, and trust. Furthermore, the Ministry of Health and Welfare notes that a dementia-friendly society should include four elements: dementia-friendly participation, dementia-friendly residents, a friendly environment, and dementia-friendly organizations. Libraries should serve as one of these organizations. Therefore, this study aims to use the Everyday Life Information Practices (EIP) model to explore caregiving challenges, information access characteristics, and barriers to seeking external support, while further understanding the library's role in dementia issues from the perspective of information practices. The research questions include: (1) What challenges exist in the daily caregiving contexts of family caregivers? (2) What are the characteristics of their information practices when coping with these challenges? (3) What factors influence these information practices? (4) What is the caregivers' information practice model, and what is the library's role within it? (5) What are caregivers' expectations for libraries? This study employed semi-structured interviews with small-scale questionnaires. The questionnaires supported the researcher had an in-depth exploration in the interview. The results categorize the daily life contexts of caregivers into nine areas, including diagnosis and deterioration, lifestyle restructuring, medical activities, care support, medication management, dietary issues, personal safety, interpersonal conflict, and use of external resources, encompassing 28 care challenges. To cope with these challenges, caregivers engage in information actions such as information seeking, encountering, sharing, using, shelving, and concealing. Characteristics of information seeking include active seeking, monitoring information, and seeking through family agents. Information pathways are prioritized via the Internet, interpersonal resources, or multiple pathways. In multiple pathways, caregivers did not prefer having information from certain sources. Regarding information use, caregivers filter information by comparing information from multiple resources or consulting with professionals. They judge information value based on immediate utility and wield information to assist memory or select institutions. Factors influencing these practices include the caregiver’s experience, knowledge structure, social norms, affective factors (values, interests, and emotions), and external factors (information characteristics, treatment cost-effectiveness, and distance). The study synthesized these results into an information practice model for dementia family caregivers that is extremely similar to Savolainen's (2008), confirming the model’s suitability for dementia care research. While most caregivers had few specific expectations for libraries, the staff of Community-Based Dementia Care Centers believed libraries possess great value in promoting dementia-friendliness. Recommendations for libraries include cross-industry cooperation, targeted activity design, providing collection resources, and linking resources to support dementia care. Finally, the study suggests that future research recruit participants as family units, compare urban and rural differences in information practices, or use quantitative methods to explore causal relationships between elements. Practical suggestions for libraries include: (1) expanding service targets and outreaching services to the community; (2) integrating virtual and physical ways to hold the events; (3) maintaining consistent service; (4) training librarians in dementia awareness and symptom response to form a social safety net; and (5) promoting activities with social media, dementia-related organization, or community offices.