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The experiential meaning of eating, handicap, adaptedness, and confirmation in living with esophageal dysphagia

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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 selfrealization. In conclusion, a specific model for understanding the dysphagic patient's concealment of dysphagia in the medical encounter has been developed.

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References

  1. Drew N: Exclusion and confirmation: a phenomenology of patients' experiences with caregivers. J Nurs Scholarship 18:39–43, 1986

    Google Scholar 

  2. Anderson N: Exclusion: a study of depersonalization in health care. J Hum Psychol 21:67–78, 1981

    Google Scholar 

  3. Quill TE: Recognizing and adjusting to barriers in doctorpatient communication. Ann Intern Med 111:51–57, 1989

    Google Scholar 

  4. Francis V, Korsch BM, Morris MJ: gaps in doctor-patient communication. Patients' responses to medical advice. N Engl J Med 280:535–540, 1969

    Google Scholar 

  5. Lazare A: Shame and humiliation in the medical encounter. Arch Intern Med 147:1653–1658, 1987

    Google Scholar 

  6. Engel N: Confirmation and validation: the caring that is professional nursing. Image 12:53–56, 1980

    Google Scholar 

  7. Garwin BJ, Kennedy CW: Confirming communication of nurses in interaction with physicians. J Nurs Educ 27:161–166, 1988

    Google Scholar 

  8. Wilmer HA: The doctor-patient relationship and the issues of pity, sympathy, and empathy. In: Stoeckle J (ed.): Encounters between Patients and Doctors An Anthology. Cambridge, Massachusetts: The MIT Press, 1987, pp 403–411

    Google Scholar 

  9. Bevis EM: Nursing: a systems model. In: Currculum Building in Nursing a Process, 2nd ed. St. Louis: CV Mosby Company, 1978, pp 95–122

    Google Scholar 

  10. Pörn I: Vård med helhetssyn (Holistic care). Finska läkarsällskapets handlingar 148:137–140, 1988

    Google Scholar 

  11. Balint M: The apostolic function: II. In: The Doctor, His Patient and the Illness. New York: International Universities Press Inc, 1972, pp 231–238

    Google Scholar 

  12. Pörn I: Heath and adaptedness. Theor Med 1995, (in press)

  13. Nordenfelt L: Towards a holistic theory of health. In: Nordenfelt L (ed.) On the Nature of Health, an Action-Theoretic Approach. Dordrecht: D Reidel Publishing Company, 1987, pp 35–104

    Google Scholar 

  14. Whitbeck C: A theory of health. In: Caplan AL, Engelhardt HT Jr, McCartney IJ (eds.) Concepts of Health and Disease: Interdisciplinary Perspectives. Reading, MA: Addison-Wesley, 1981, pp 611–626

    Google Scholar 

  15. Gustafsson B, Tibbling L: Dysphagia, an unrecognized handicap. Dysphagia 6:193–199, 1991

    Google Scholar 

  16. Wright KJT: Exploring the uniqueness of common complaints. Br J Psych 43:221–232, 1970

    Google Scholar 

  17. Good BJ, Good M-JD: The meaning of symptoms: a cultural hermeneutic model for clinical practice. In: Eisenberg L, Kleinman A (eds) The Relevance of Social Science for Medicine. Dordrecht: D Reidel Publishing Company, 1980, pp 165–196

    Google Scholar 

  18. Taylor C: Interpretation and the sciences of man. In: Beehler R, Drengson AR (eds.) The Philosophy of Society. London: Methuen, 1978, pp 156–200

    Google Scholar 

  19. McCulloch WS: Of I and it. Perspect Biol Med 12(4):547–560, 1969

    Google Scholar 

  20. Alwmark A et al: Gastrointestinal diagnostik-aktuella synpunkter (Gastrointestinal Diagnostic-Current Viewpoints). Lund: AB Tika, 1983, pp 25–31

    Google Scholar 

  21. Hendrix TR: Dysphagia. In: Thorn GW, Adams RD, Braunwald E, Isselbacher KJ, Petersdorf RG. Harrison's Principles of Internal Medicine, 8th ed. New York: McGraw-Hill, 1977, pp 203–205

    Google Scholar 

  22. Edwards DAW: Diagnostic procedures, history and symptoms of esophageal disease. In: Vantrappen JG, Hellemens J (eds.): Diseases of the Esophagus. Berlin, Heidelberg, New York: Springer Verlag, 1974, pp 103–118

    Google Scholar 

  23. Borgström PS, Olsson R, Sundkvist G, Ekberg O: Pharyngeal and oesophageal function in patients with diabetes mellitus and swallowing complaints. Br J Radiol 61:817–821, 1988

    Google Scholar 

  24. Pope CE: Diseases of the esophagus. In: Wyngaarden JB, Smith LH Jr (eds.) Cecil Textbook of Medicine. Philadelphia: WB Saunders Company, 1982, pp 621–632

    Google Scholar 

  25. Lindgren S: The prevalence of swallowing complaints among 50–79-year-old men and women in an urban population. In: Lindgren S: Swallowing Complaints Prevalence Evaluation of Cervical Dysphagia. Doctoral dissertation. University of Lund, Sweden, 1989, pp 51–58

    Google Scholar 

  26. Tibbling L, Stenkvist M: Foreign bodies in the esophagus. A study of causative factors. Dysphagia 6:224–227, 1991

    Google Scholar 

  27. Castell DO, Donner MW: Evaluation of dysphagia: a careful history is crucial. Dysphagia 2:65–71, 1987

    Google Scholar 

  28. Edwards DAW: The problem of dysphagia. Practitioner 216:631–636, 1976

    Google Scholar 

  29. Ekberg O, Borgström PS: Patienter med sväljningssvårigheter utgör ett stort problem i vården (Patients with swallowing difficulties constitute a great problem in care). Läkartidningen 85:3037–3040, 1988

    Google Scholar 

  30. Gustafsson B, Tibbling L, Theorell T: Do physicians care about patients with dysphagia? A study on confirming communication. Family Practice 9:203–209, 1992

    Google Scholar 

  31. Axelsson K, Norberg A, Asplund K: En modell för analys av ätproblem (A model for analysis of eating problems). Socialmedicinsk tidskrift 60:350–355, 1984

    Google Scholar 

  32. Norberg A, Athlin E, Winblad B: A model for the assessment of eating problems in patients with Parkinson's disease. J Adv Nurs 12:473–481, 1987

    Google Scholar 

  33. Ravich WJ, Wilson RS, Jones B, Donner MW: Psychogenic dysphagia and globus: reevaluation of 23 patients. Dysphagia 4:35–38, 1989

    Google Scholar 

  34. Bury M: Chronic illness as biographical disruption. Social Health Illn 4:167–182, 1982

    Google Scholar 

  35. Axelsson K, Norberg A, Asplund K: Relearning to eat late after a stroke by systematic nursing intervention: a case report. J Adv Nurs 11:553–559, 1986

    Google Scholar 

  36. Norberg A, Nilsson M, Karlsson L, Sjöberg B: Att bli matad—en krisupplevelse (To be fed an experience of crisis). Sjuksköterskan February: 20–23, 1981

  37. Axelsson K, Norberg A, Asplund K: Omvårdnadsdiagnostik tillämpad på ätproblem hos patienter med cardiovasculär sjukdom (Nursing diagnostic applied on patients with cerebrovascular accident). Vård i Norden 6:306–310, 1986

    Google Scholar 

  38. Norberg A, Athlin E: The interaction between the Parkinsonian patient and his caregiver during feeding: a theoretical model. J Adv Nurs 12:545–550, 1987

    Google Scholar 

  39. Norberg A, Sandman PO: Existential dimensions of eating in Alzheimer's patients—an analysis by means of E.H. Erikson's theory of eight stages of man. Adv Nurs 21:127–134, 1988

    Google Scholar 

  40. Gustafsson B, Theorell T: Adaptedness and Coping in dysphagic students. Dysphagia 10:86–92, 1995

    Google Scholar 

  41. Gustafsson B, Pörn I: A motivational approach to confirmation. An interpretation of some dysphagic patients' experiences. Theor Med 15:409–430, 1994

    Google Scholar 

  42. Tibbling L, Gustafsson B: Dysphagia and its consequences in the elderly. Dysphagia 6:200–202, 1991

    Google Scholar 

  43. Pörn I: Social dynamics. In: Action Theory and Social Science. Dordrecht-Holland: D Reidel Publishing Company, 1981, pp 83–104

    Google Scholar 

  44. Pörn I: On the dialectic of the soul; an essay on Kirkegaard. Acta Philosophica Fennica 32:198–210, 1981

    Google Scholar 

  45. Pörn I: Kirkegaard and the study of the self. Inquiry 27:199–205, 1988

    Google Scholar 

  46. Pörn I: An equilibrium model of health. In: Nordenfeldt L, Lindahl B (eds.). Heath. Disease, and Causal Explanations in Medicine. Dordrecht: D Reidel Publishing Company, 1984, pp 3–9

    Google Scholar 

  47. Pörn I: On the nature of emotions. Philosophical Studies. University of Uppsala, Sweden 38:205–214, 1986

    Google Scholar 

  48. Pörn I: Filosofi-visdom för vår tid? (Philosophy-wisdom for our age?) In: Venkula J (ed.). Ajatuksen Voima. Helsinki: Edistyksellisen Tiedeliiton Julkaisuja, 1990, pp 21–31

    Google Scholar 

  49. Pörn I: Vårdlära och vårdvetenskap. Några vetenskaps-teoretiska synpunkter (Caring theory and caring science. Some science-theoretic aspects). Socialmedicinsk tidskrift 7:302–306, 1984

    Google Scholar 

  50. Jacobs JA: Constructive rationality and self-enjoyment. In: Jacob JA. Virtue & Self-Knowledge. New Jersey: Prentice-Hall, 1989, pp 8–29

    Google Scholar 

  51. MacKay DM: Towards an information-flow model of human behaviour. Br J Psych 47:30–43, 1956, Reprinted in Buckley W (ed.): Modern Systems Research for the Behavioral Scientist. Chicago: Aldine Publishing Company, 1968, pp 359–368

    Google Scholar 

  52. Bowlby J: Instinctive behaviour: an alternative model. In: Attachment and Loss, Vol 1: Attachment. New York: Basic Books Inc., Publishers, 1969, pp 37–57

    Google Scholar 

  53. Sommerhof G: Purpose, adaptation and “directive correlation.” In: Buckley W (ed.). Modern Systems Research for the Behavioral Scientist. Chicago: Aldine Publishing Company, 1968, pp 281–295

    Google Scholar 

  54. Sommerhof G: The abstract characteristics of living systems. In: Emery FE (ed.). Systems Thinking. England: Penguin Books Ltd, (Reprinted) 1970, pp 147–202

    Google Scholar 

  55. Zetterberg HL: Några teorier om motivation. In: Arbete, Livsstil och Motivation (Work, Lifestyle and Motivation). Stockholm: Rapport till SAF-kongressen, Svenska Arbetsgivarföreningen, 1977, pp 32–41

  56. Nathanson M, Bergman PS, Gordon GG: Denial of illness. Arch Neurol Psychiatry 68:380–387, 1952

    Google Scholar 

  57. Björvell H: Treatment of severe obesity: long-term follow-up, personality traits, eating behaviour and effects of peroral glycerol in obese subjects. Doctoral dissertation. Karolinska Institute, Stockholm, 1985, pp 9–25

    Google Scholar 

  58. Ilmonen K: Food choice in modern society. Bibl Nutr Dieta 45:30–51, 1990

    Google Scholar 

  59. Murcott A: The cultural significance of food and eating. Proc Nutr Soc 41:203–210, 1982

    Google Scholar 

  60. Menzies IEP: Psychosocial aspects of eating. J Psychosom Res 14:223–227, 1970

    Google Scholar 

  61. Chappelle ML: The language of food. Am J Nurs 72:1294–1295, 1972

    Google Scholar 

  62. Bayer LM, Bauers CM, Kapp SR: Psychosocial aspects of nutritional support. Nurs Clin North Am 1:119–128, 1983

    Google Scholar 

  63. Canetti E: On the psychology of eating. In: Crowds and Power. New York: Penguin Books, 1981, pp 257–262

    Google Scholar 

  64. Weinberg J: Food and Eating—Behavioral Symbols in the Aged. Gerontological Congress, Vienna, 1966

  65. Moore HB: The meaning of food. Am J Clin Nutr 5:77–82, 1957

    Google Scholar 

  66. Hambraeus GM, Fletcher R, Heden G, Wareborn A: Dysphagia—social implications and indications for surgery. In The Surgical Treatment of Oesophageal Cancer. Doctoral dissertation, University of Lund, Sweden, 1986, pp 96–103

    Google Scholar 

  67. Boorse C: On the distinction between disease and illness. In: Caplan AL, Engelhardt HT, McCartney JJ (eds.) Concepts of Health and Disease, Interdisciplinary Perspectives. Massachusetts: Addison-Wesley Publishing Company, 1981, pp 545–560

    Google Scholar 

  68. World Health Organization: International Classification of Impairments, Diabilities, and Handicaps. Geneva: WHO, 1980, pp 184–207

    Google Scholar 

  69. Söder M: The concept of handicap—a comparison between ICIDH definition and a Swedish definition. In: Söder M (ed.): Impairment, Disability and Handicaps. Stockholm: Swedish Council for Planning and Coordination of Research 1, 1988, pp 27–33

    Google Scholar 

  70. Badley EM: The ICIDH: format, application in different settings, and distinction between disability and handicap. Int Disabil Stud 9:122–125, 1987

    Google Scholar 

  71. Nordenfelt L: On disabilities and their classification. Studies on Health and Society, University of Linköping, 1983 p 1

  72. Lazarus RS, Folkman S: Stress, Appraisal, and Coping. New York: Springer-Verlag, 1984, pp 117–180

    Google Scholar 

  73. Antonovsky A: The “Sense of Coherence” concept. In: Unraveling the Mystery of Health. How People Manage Stress and Stay Well. San Francisco, London: Jossey-Bass Publishers, 1988, pp 15–34, 189–194

    Google Scholar 

  74. Björvell H, Langius A, Antonovsky A: The sense of coherence concept and its relation to personality trains in Swedish sample. Scand J Caring Sci 6(3):165–171, 1992

    Google Scholar 

  75. Theorell T: Personal control at work and health: a review of epidemiological studies in Sweden. In: Steptoe A, Appels A (eds.) Stress, Personal Control and Health. Chichester: John Wiley & Sons, 1989, pp 49–64

    Google Scholar 

  76. Rotter JB: Generalized expectancies for internal versus external control of reinforcement. Psych Monogr 80:1–25, 1966

    Google Scholar 

  77. Theorell T, Konarski-Svensson K, Ahlmén J, Perski A: The role of paid work in Swedish chronic dialysis patients—a nationwide survey: paid work and dialysis. J Int Med 230:501–509, 1991

    Google Scholar 

  78. Arborelius E, Bremberg S, Timka T: What is going on when the general practitioner doesn't grasp the situation? Fam Pract 8:3–9, 1991

    Google Scholar 

  79. Lipowski ZJ: Physical illness, the individual and the coping proccsses. Psychosom Med I:91–102, 1970

    Google Scholar 

  80. Levi L: Environmental factors in stress and coping. Stress and Coping Report, No. 3, 1981

  81. Andersson KM: Patienters upplevelser av trygghet och otrygghet (Patients' experiences of security and unsecurity). Omvårdnad och Trygghet-en Metateoretisk och en Fenomenologisk Studie. Doctoral dissertation. University of Gothenburg, Sweden, 1984 pp 1–72

    Google Scholar 

  82. Gibson CH: A concept analysis of empowerment. J Adv Nurs 16:354–361, 1991

    Google Scholar 

  83. Blomdahl-Frej G: Mot enexistentiell relationistisk helhetssyn (Towards a Holistic View—An Existential Relationistic Approach). Doctoral dissertation. University of Gothenburg, Sweden, 1988, pp 73–141

    Google Scholar 

  84. Buber M: Distance and relation. Psychiatry 20:97–104, 1957

    Google Scholar 

  85. Buber M: Elements of the interhuman. In: The Knowledge of Man. Atlantic Highlands, NJ: Humanities Press International Inc, 1988, pp 62–78

    Google Scholar 

  86. Watzlawick P, Beavin JH, Jackson DD: Definition of self and other. In: Pragmatics of Human Communication. London: Faber and Faber, 1967, pp 83–90

    Google Scholar 

  87. Laing RD: Confirmation and disconfirmation. In: The Self and Others. London: Iavistock Publications, 1961, pp 88–97

    Google Scholar 

  88. Laing RD: The Politics of Experience. New York: Ballantine, 1967, p 58

    Google Scholar 

  89. Cissna KN, Sieburg E: Patterns of interactional confirmation and disconfirmation. In: Wilder-Mott C, Weakland JH (eds.): Rigor and Imagination. New York: Praeger, 1981, pp 253–282

    Google Scholar 

  90. Cissna KN: Advances in the analysis of confirming and disconfirming behaviors. Paper presented to the Communication Theory Divisions, Southern Speech Communication Association/Central States Speech Association Joint Convention, St. Louis, April 10, 1987

  91. Biestek FP: The essence of the casework relationship. In: The Casework Relationship. London: George Allen & Unwin Ltd, 1957, pp 3–20

    Google Scholar 

  92. Schaefer C, Coyne JC, Lazarus RS: The health-related functions of social support. J Behav Med 4:381–406, 1981

    Google Scholar 

  93. Lynch J: Human contact in life-threatening environments. In: The Broken Heart: The Medical Consequences of Loneliness. New York: Basic Books, 1977, pp 122–155

    Google Scholar 

  94. Lundman A, Norberg A: The significance of a sense of coherence for subjective health in persons with insulin-dependent diabetes. J Adv Nurs 18:381–386, 1993

    Google Scholar 

  95. Kihlgren M, Hallgren A, Norberg A, Karlsson I: Disclosure of basic strengths and basic weaknesses in demented patients during morning care before and after staff training in integrity promoting care. Analysis of video-recordings by means of the Erikson theory of “eight stages of man”. In: Integrity Promoting Care of Demented Patients. Doctoral dissertation. New Series No 351, University of Umeå, Sweden, 1992, pp 133–149

    Google Scholar 

  96. Lundman B, Norberg A: Coping strategies in persons with insulin-dependent diabetes. Diagnostic reasoning and planning for nursing intervention. In: Daily Living and Coping Strategies in Insulin-dependent Diabetics—Diagnostic Reasoning in Nursing. Doctoral dissertation. University of Umeå, Sweden, 1990, pp 97–117

    Google Scholar 

  97. Bygren LO: Met and unmet needs for medical and social services. Scand J Soc Med (Suppl 8):43–67, 1974

  98. Hanson K: Mead's theory of the self. Problems in the self. In: The Self Imagined. New York and London: Routledge Kegan Paul, 1986, pp 14–41

    Google Scholar 

  99. Murray EJ: Emotionella motiv (Emotional motives). In: Motivation och Emotion-om Människans Drivkrafter och Känslor. Stockholm: Wahlström & Widstrand, 1973, pp 73–101

    Google Scholar 

  100. Nordenfelt L: Explanation of Human Actions. Doctoral dissertation, Faculty of Arts, University of Uppsala, Sweden, 1974, pp 37–60

    Google Scholar 

  101. Evans KT, Roberts GM: Where do all the tablets go? Lancet 4:1237–1239, 1976

    Google Scholar 

  102. Castell DO: Esophageal disorders in the elderly. Gastroenterol Clin North Am 19:235–254, 1990

    Google Scholar 

  103. Carnevali D: The nursing domain for diagnostic reasoning. In: Carnevali D, Mitchell PH, Woods NF, Tanner CA (eds.): Diagnostic Reasoning in Nursing. Philadelphia: JB Lippincott Company, 1984, pp 5–56

    Google Scholar 

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    Barbro Gustafsson DrMedSci

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Gustafsson, B. The experiential meaning of eating, handicap, adaptedness, and confirmation in living with esophageal dysphagia. Dysphagia 10, 68–85 (1995). https://doi.org/10.1007/BF00440076

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