Gustafsson B
National Institute for Psychosocial Factors and Health, Karolinska Institute, Stockholm, Sweden.
Dysphagia. 1995 Spring;10(2):68-85. doi: 10.1007/BF00440076.
This article is mainly based on interview studies of pensioners' (n = 62), patients' (n = 19), and students' (n = 87) experiences of living with longstanding esophageal dysphagia. The aim is to describe the experiential meaning of dysphagic patients' lives by interpreting their experiences, problems, and emotions and by specifying these into scales according to the model of goal-directed action by Pörn [43-49]. The experiential meaning will be articulated in terms of attainment or nonattainment of goals in relation to eating, handicap, adaptedness, and confirmation. In the experiential meaning of eating, the emphasis is on the attainment of nourishing goals or goals attained by means of food with desired hedonistic qualities and linked with feelings of hope or no hope of a shared life. The experiential meaning of handicap is interpreted as the dysphagic individual's experiences of an actual nonattainment of eating goals due to swallowing disabilities and with experiences of nonattainment of other important goals and related emotions; for example, shame for human incompetence. The experiential meaning of adaptedness is understood as the dysphagic individual's experiences of actual capacity for goal attainments interpreted as a sense of control in the daily living with dysphagia and linked with security, or in the negative case, reduced self-esteem and feelings of panic or fear. The experiential meaning of confirmation is interpreted as the dysphagic individual's experiences of actual or potential repertoire for goal attainment, i.e., self-assessment strengthened by evidence obtained in relationships linked with emotions of hope of self-realization. In conclusion, a specific model for understanding the dysphagic patient's concealment of dysphagia in the medical encounter has been developed.
本文主要基于对62名养老金领取者、19名患者和87名学生长期食管吞咽困难生活经历的访谈研究。目的是通过解读吞咽困难患者的经历、问题和情感，并根据Pörn [43 - 49]的目标导向行动模型将其具体化为量表，来描述吞咽困难患者生活的体验意义。体验意义将根据饮食、残疾、适应性和确认方面目标的达成或未达成来阐述。在饮食的体验意义中，重点是实现营养目标或通过具有期望享乐品质的食物实现的目标，并与对共同生活有希望或没有希望的感觉相关联。残疾的体验意义被解释为吞咽困难个体因吞咽障碍实际未实现饮食目标的经历，以及未实现其他重要目标的经历和相关情感；例如，因自身能力不足而感到羞愧。适应性的体验意义被理解为吞咽困难个体实现目标的实际能力体验，被解释为在吞咽困难的日常生活中的控制感，并与安全感相关联，或者在负面情况下，自尊心降低以及恐慌或恐惧的感觉。确认的体验意义被解释为吞咽困难个体实现目标的实际或潜在能力，即通过在与自我实现希望的情感相关的关系中获得的证据加强的自我评估。总之，已经开发出一种用于理解吞咽困难患者在医疗接触中对吞咽困难隐瞒情况的特定模型。
