title: The experiential meaning of eating, handicap, adaptedness, and confirmation in living with esophageal dysphagia.
abstract: 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.
authors.affiliation: National Institute for Psychosocial Factors and Health, Karolinska Institute, Stockholm, Sweden.
authors.forename: B
authors.initials: B
authors.lastname: Gustafsson
mesh_terms: D000222:Adaptation, Physiological; D000223:Adaptation, Psychological; D000368:Aged; D003680:Deglutition Disorders / Q000503:physiopathology*; D006233:Persons with Disabilities; D004435:Eating; D004947:Esophagus / Q000503:physiopathology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged