社區糖尿病患 對「糖尿病」的認知內容、罹病經驗與自我照顧行為-從理論到實際

Community Diabetic Patients' Cognition, Illness Experience and Self-Care Behavior

賴文恩(Wen-An Lai)

指導教授 ： 丁志音 ； 季瑋珠

國立臺灣大學/公共衛生學院/流行病學研究所/博士(2004年)

https://doi.org/10.6342/NTU.2004.02331

摘要

背景與目的 糖尿病為二十一世紀初，全世界愈加盛行也日漸重要的慢性病。其治療與控制，有賴病患在日常生活中不斷調整自我照顧行為。因此，如何了解病患的認知、經驗與健康行為，以便適當地與之溝通，促使遵行醫囑，是醫護人員重要的診療工作。本研究之目的，在探索糖尿病患之認知內容、罹病經驗與自我照顧行為之關係與源由，作者希望本研究之結果，可以協助醫療專業人員建立適當之醫病溝通臨床技巧。
材料與方法 本研究採立意取樣，在台灣中部某鄉鎮收集社區糖尿病患，以「疾病解釋模式」為主，「常識模式」為輔，設計訪談大綱，共進行了22次的個別深度訪談及7次焦點團體。作者將訪談資料進行質性分析，期望藉由「描繪個別獨立屬性 (概念)」的方式，勾勒出受訪病患對「糖尿病」物件的認知內容，並深入了解這些內容與自我照顧行為間之關連。在比較最新醫學知識後，找出其中可能需澄清之誤解，進一步找出有效醫病溝通，增強病患遵行醫囑的可能性；作者也描述病患對疾病可能有的情緒反應，供醫護人員參考，以便在臨床上協助病患面對情緒問題。
結果 社區受訪糖尿病患的認知，確實可用個別獨立屬性 (概念) 方式，並透過「疾病解釋模式」五大項架構，以「糖份」概念為主軸加以描述，包括「遺傳、飲食導致胰臟分泌功能不足，糖份代謝異常，血中糖份昇高、自尿液排出，以『胰臟功能衰退至失效』為進展之病程，治療策略如運動、飲食皆以降低血糖為主，藥物控制恐有副作用或愈用愈重(多)之虞」；「體質」與遺傳、飲食密切相關，或為致病原因之一；病患可能自行整合單一向度嚴重度之指標，藉此判斷病情。另外，有一位病患受傳統「消渴症」認知影響，推演出有別於其他病患之成組概念。
在情緒上，受訪病患對糖尿病的反應多元而個別化。較負面的心理反應，來自疾病治療上的不方便與對未來命運的擔心；社交與人際互動上，也可能產生刻意隱瞞與社交退縮的現象；另外，有一位受訪病患出現此心理情緒的家族傳承現象。
結論 作者認為，糖尿病患對疾病「疾病解釋模式」的成組概念，以鬆散、彈性而不精確的關係連結起來；病患不同自我照顧行為間，密切相關而互相影響，應整體視之，遵行醫囑行為，常只是病患適應疾病行為過程中，某一時地不盡然正確之選擇判斷，非持續存在的特質，更無涉道德意涵。因為此選擇常受成見影響，故澄清重要而關鍵的誤解 (概念)，也許較一味灌輸新知有效。
病患認知中的重要誤解應予澄清：一、「以糖份代謝為主軸」之概念，致使他們常忽略「控制糖份」以外的治療措施，如治療高血壓、控制血脂肪、戒煙等。此誤解或來自「糖尿病」名稱引發之語意想像。未來如果以「新陳代謝症候群」補充其意涵，或將更容易傳達正確治療目標與計劃。二、病患因無法區分「藥物使用量」與「併發症出現」，在評斷病情嚴重度時的意義，以致常因不認同病情的嚴重程度而拒絕醫師加重(多)藥物的建議。三、飲食控制的策略，不只是減少糖份的攝取。四、流汗不等同於運動，只流汗的活動如泡溫泉等，可能並不具有運動的好處。五、高血糖對身體 (包括腎臟) 的傷害，也許更甚於藥物。六、某些藥物或可以延緩胰臟功能退化，不會愈吃愈重(多)。另外，受訪病患的情緒反應常較負面，如煩惱、壓力與社交上的困難，醫護人員應加以理解，並協助病患加以面對，並注意有否出現情緒壓力的家族傳承現象。

關鍵字

罹病經驗 ； 自我照顧行為 ； 糖尿病 ； 質性研究 ； 疾病解釋模

並列摘要

Aims Type 2 diabetes is becoming more prevalent in Taiwan. To maximize the benefits of medical treatment, diabetic patients need continuously adherent to physicians’ recommendations and improve their self-care in daily life. Providing sufficient knowledge, helping patients to cope with emotional stress and improving patients’ quality of self-care, are important measures to good diabetes management. The aim of my study is to investigate community patients’ cognition, illness experience and self care behaviour, I hope my results will help physicians to develop adequate patient-centered culture-sensitive clinical skills.
Methods ዊHere in this study, I used twenty two in-depth interviews and seven focus groups to collect the perspectives from diabetic patients recruited from a rural Taiwan community. The interview protocol, including three parts of questions: (1) illness experiences since diagnosis, (2) viewpoint on diabetes including cognitive and emotional aspects, (3) the contextual factors related to diabetic and health conditions, was modified from Kleinman’s EM model and Leventhal’s CSM. All interviews were audio-taped and the transcripts were analyzed by editing and immersion/crystallization. Emerging themes were compared with current medical knowledge to determine their clinical significance.
ResultsዊI found that the object-oriented method, characterized by objects, attributes, classification and inheritage, is useful in describing layman illness model, which can also been classified according to EM model. The key points of layman cognitive model can be described as following: “Genetic and dieting factors, which can reduce pancreas secreting function and impair sugar metabolism, are the main etiological factors of type 2 DM. Its illness course progress when the pancreas deteriorate gradually and loss its function totally at the end. The severity, indicating the position of some patient in the illness course do exists as a one-dimensional scale. Dietary restriction and exercise were beneficial. The former, mainly understood as reducing carbohydrate intake, was thought to be most important; Exercise, to the point of sweating, was seen as a way to eliminate pharmaceutical toxins. Taking medicine was regarded with ambivalent attitudes due to concerns about adverse effects (especially renal injury and vicious cycle increasing more and more dosage).”
ConclusionsዊIn conclusion, laymans’ cognitive concepts to diabetes, characterized by reflexive, inprecisive, linked loosely in illness model. Patients regard all treatment strategies as integrative and were intertwined in daily life. Some of their non-adherence behaviours are products of intentional rational decision influenced by misconceptions which needs clarification. The most important misconceptions are: 1. focusing on sugar-control only, 2. benefit of sweating to eliminate toxins, 3. fear of renal toxicity and vicious cycle of hypoglycaemic agents. Renaming diabetes, such as “metabolic syndrome” or a specific kind of “ti-zhi”, may bring new, acceptable insight to Chinese diabetic patients.

並列關鍵字

illness experience ； qualitative research ； self-care behavior ； diabetes mellitus ； explanatory model

參考文獻

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