Abstract
Eleven parents of 8-year-olds suffering from PKU were interviewed about their experiences with the disease. The narrative interview method was selected in order to expose the problems from the parents' angle without infuence through expert prompting. On being notified of the diagnosis after birth, the parents were extremely shocked and went through emotional crises and adjustment problems during the first 12 months. The narcissistic hurt of not having a healthy child was compounded by problems with dietary technique. The behaviour and development of the children themselves were no particular problem. Handling the diet ranked highest among the problems raised by the parents. It turned out that all the parents did not always apply the diet strictly and deviated from it. The underlying reason was a compromise between an ideal attitude towards the diet with the accompanying experience of loss and guilt, and the goal of undisturbed personality development of the child. Discussion groups with therapeutic support are suggested as a way of relieving the burden on the parents.
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References
Angermeyer MC, Döhner O (eds) (1981a) Chronisch kranke Kinder und Jugendliche in der Familie. Enke, Stuttgart
Angermeyer MC, Döhner O (1981b) Chronisch kranke Kinder und Jugendliche in der Familie. Versuch einer Synopse. In: Angermeyer, MC, Döhner O (eds) Chronisch kranke Kinder und Jugendliche in der Familie. Enke, Stuttgart, pp 121–123
Bauriedl TH (1985) Psychoanalyse ohne Couch. Urban und Schwarzenberg, München
Bentovim A (1968) Controlled observations of phenylketonuric children on and during withdrawal from low phenylalanine diet. Arch Dis Child 43:745–746
Beutel M (ed) (1988) Bewältigungsprozesse bei chronischen Erkrankungen. Medizin, Weinheim
Blume A (ed) (1987) Den Umständen entsprechend optimistisch. Ratgeber für Eltern chronisch kranker Kinder. Rowohlt, Reinbek
Drotar D (1981) Psychological perspectives in chronic childhood illness. J Pediatr Psychol 6:211–228
Eiser C (1985) The psychology of childhood illness. Springer, Berlin Heidelberg New York Tokyo
Fisch RO, Sines LK, Chang P (1981) Personality characteristics of non-related phenylketonurics and their family members. J Clin Psychiatry 42:106–113
Fisch RO, Chang P, Sines LK, Weisberg S, Bessman SO (1985) Relationship between phenylalanine tolerance and psychological characteristics of phenylketonuric families. Biochem Med 33: 236–245
Girtler R (1984) Methoden der qualitativen Sozialforschung. Böhlau, Wien
Jüttemann G (ed) (1985) Qualitative Forschung in der Psychologie. Beltz, Weinheim
Kast V (1982) Trauern. Phasen und Chancen des psychischen Prozesses. Kreuz, Stuttgart
Kazak AE, Reber M, Snitzer L (1988) Childhood chronic disease and family functioning. A study of phenylketonuria. Pediatrics 81:224–230
Lehmann A (1983) Erzählstruktur und Lebenslauf. Autobiographische Untersuchungen. Campus, Frankfurt
Leithäuser T, Volmerg B (1979) Anleitung zur empirischen Hermeneutik. Psychoanalytische Textinterpretation als sozialwissenschaftliches Verfahren. Suhrkamp, Frankfurt
Moen JL, Wilcox RD, Burns JK (1977) PKU as a factor in the development of self-esteem. J Pediatr 90:1027–1029
Oevermann U (1977) Sprache und soziale Herkunft. Suhrkamp, Frankfurt
Petermann F, Noeker M, Bode U (1987) Psychologie chronischer Krankheiten im Kindes- und Jugendalter. Psychologie Verlags-Union, München Weinheim
Pless IB, Pinkerton PH (1975) Chronic childhood disorder — Promoting patterns of adjustment. Kimpton Publishers, London
Schweitzer S, Wolff G, Brodehl J (1987) Psychosoziale Aspekte bei der Behandlung der Phenylketonurie. Klin Pädiatrie 199:90–94
Steinhausen HC (1984) Chronisch kranke Kinder und Jugendliche. In: Steinhausen HC (ed) Risikokinder. Ergebnisse der Kinderpsychiatrie und-psychologie. Kohlhammer, Stuttgart, pp 55–72
Stevenson JE, Hawcroft J, Lobascher M, Smith I, Wolff OH, Graham PJ (1979) Behavioural deviance in children with early treated phenylketonuria. Arch Dis Child 54:14–18
Thieffry AF, Lebecq MF, Farriaux JP, Parquet P (1985) Retentissement psychologique, sur l'enfant et sa famille, de la prise en charge continue des enfants phenylcetonuriques et hypothyroidiens. Ann Pediatrie 32:651–659
Wood AC, Friedmann CJ, Steisel IM (1967) Psychosocial factors in phenylketonuria. Am J Orthopsychiatry 37:671–679
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On behalf of a group of psychologists cooperating for the PKU study: S. Börner, B. Granitzny, R. Matthaei, U. Michel, E. Schmidt, A. Stachiw, J. Weglage, and H. Weyhreter
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Awiszus, D., Unger, I. Coping with PKU: results of narrative interviews with parents. Eur J Pediatr 149 (Suppl 1), 45–51 (1990). https://doi.org/10.1007/BF02126299
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DOI: https://doi.org/10.1007/BF02126299