反思帶病的身體：經驗知識觀點

Reflection on the sick body from the viewpoint of experiential knowledge

在專家知識逐漸隕落和知識的民主化之下，奠基於日常生活的「經驗知識」被視為理解社會問題的重要知識。在疾病研究的領域裡，指涉病人的學術用語與概念改變，轉而注重病患的經驗知識。以往，病患對疾病的體認被認為是常民信仰或是錯誤知識，然而，近年來已逐漸被思考成能提供不同於醫護觀點的病患觀點。這意味原本被視為被動客體的病患，如今成為擁有自己身體、病況和經驗知識的專家。本研究採取「傳記敘事詮釋」法，分析癌症病患如何照護帶病的身體，如何經驗疾病。在病患與疾病共生的日常實踐中，運用和形成的經驗知識為何？這些知識如何用來解釋與理解帶病的身體？研究發現，病患的自我照護方式與生物醫學交織，反映出對生物醫學的依附，但他們也會進行改造，以更符合、適用於自己的病況。因此，經驗知識是用於理解特定情境、並在其中採取行動，是一取決於情境的知識。經驗知識與生物醫學知識的基礎不同，病患擁有的是關於經驗的知識，關注並非整體上的可能性，而是可行的個人策略。

Along with the decline of expert knowledge and the democratization of information, experiential knowledge grounded in everyday life is deemed as critical knowledge for comprehending social issues. Within the field of disease research, there is a growing emphasis on patients’experiential knowledge. In the past, their perception of diseases was often considered as erroneous beliefs, yet in recent years their perspectives have been regarded as complementary viewpoints to those of healthcare professionals. No longer merely passive objects, patients themselves have become experts in their own bodies, health conditions, and experiential knowledge.
The concept of experiential knowledge originated from the early 1980s as a criticism of the hegemony of professional knowledge. Critics argue that experiential knowledge based on individual and group experiences is a way to reflect on expert knowledge. Experiential knowledge is defined as“the truth learned from personal experience with a phenomenon rather than truth acquired by discursive reasoning, observation, or reflection on information provided by patients’experiential knowledge and expertise in health.”Namely, it is“truth based on personal experience with a phenomenon.”This type of knowledge is valued as an alternative knowledge source, represents a recognition to the limitations of expert knowledge in complex situations, and shifts the focus from professional knowledge to experiential knowledge.
First, this study advances the literature on patients’experience knowledge to understand why special knowledge is used and formed in the daily practice of symbiosis between patients and diseases. From the self-care style of cancer patients, the study explores how patients develop a set of patient experience knowledge and how this knowledge can be useful to patients in their daily life.
Second, this study explores the relationship between patients’experiential knowledge and biomedical and other medical practices to understand how experiential knowledge interacts with biomedical models. How do patients understand and change biomedicine during the disease process? How can knowledge from different sources be appropriated? This study looks into these questions to analyze how various medical systems meet in the sick body.
Experiential knowledge in the past was deemed as a knowledge lacking scientific evidence and irrational. This standpoint judges experiential knowledge from the scientific standard and has created a frame to limit researchers’vision to understand experiential knowledge, because they may focus on the places where experiential knowledge is less than scientific theory, but fail to see the places where experiential knowledge is different from scientific theory. In fact, when facing an illness, patients develop experiential knowledge through their daily practices to explain, understand, and shape their sick bodies. Therefore, experiential knowledge is a type of embodied knowledge or knowledge from within. It is knowing in action as well as the daily practices of knowing.
The study adopts the biographical narrative interpretation method to answer the following questions. How do cancer patients take care of their sick bodies and experience disease? How do cancer patients form experiential knowledge in their daily practices? How do cancer patients utilize experiential knowledge to interpret and understand their sick bodies? The study finds that patients’self-care practices intersect with biomedical principles. Patients also engage in adaptations to align these practices with their unique health conditions. Consequently, experiential knowledge represents a context-dependent form of knowledge. Patients who utilize such knowledge usually focus not on overall possibilities, but on feasible individual strategies.
The interview results herein show that experiential knowledge is built upon patients’daily personal experiences, including coping with radiation burns, managing chemotherapy-induced weakness, navigating work and family relationships, and interacting with healthcare professionals. Patients adopt suggestions from other patients and then adapt them through experimentation to find approaches that best suit their own needs. Experiential knowledge then refers to the knowledge that can help chronic patients live a good life. The construction of experiential knowledge depends on various aspects such as the context, the patient’s goals, relationships with others, and the specific illness the patient is experiencing. Due to the illness, patients urgently collect and analyze information, thus broadening the sources of experiential knowledge.
Patients’experiential knowledge not only comes from personal experiences, but also professional knowledge of the healthcare system. The construction of their experiential knowledge relies on a strategy of piecing together information. The medical knowledge obtained from doctors is only a part of the knowledge cancer patients obtain when dealing with their illness. Patients themselves also gather relevant information to inquire about their condition and use it for self-care. Patients attempt to connect their experiential knowledge with medical knowledge as a way of personal experience and knowledge production. When sharing knowledge, patients are valuable knowledge sources for each other. This means that experiential knowledge is different from scientific knowledge or abstract medical knowledge. It is knowledge to skillfully take care of one’s sick body.
Patient knowledge is a kind of knowledge that is learned, created, and changed from group discussions and interpretations. It is a kind of co-produced knowledge. Patients construct and revise their own knowledge from the experience of others and themselves. In this way, experiential knowledge should be understood as a practical skill, including interpretive and practical skills, that allows one to cope with disease. It is a complex knowledge involving many different techniques, values, and materials. When talking about the relationship between knowledge and experience, experience should be understood as skills or knowledge developed to deal with specific situations, because of having experience with them. Thus, experiential knowledge forms a different basis than evidence-based knowledge.
Cancer patients’experiential knowledge is knowledge related to bridging and coordinating various medical practices. Their self-care practices and biomedical knowledge intersect, reflecting their attachment to biomedical perspectives. Patients link biomedical knowledge, but they also modify it to better align with their specific conditions. Patients’experiential knowledge is the appropriation and acceptance of medical knowledge. They use biomedical testing and diagnosis methods to treat their own bodies, learn their own conditions from the test data, and evaluate the treatment effect. Therefore, researchers should explore how patients’experiential knowledge works, as well as how patients and biomedical experts co-produce medical knowledge. In other words, instead of emphasizing the confrontation between professionals and ordinary people in the past, research can target how dealing with their illness and how they cooperate with medical experts to take care of their sick bodies.