Summary
Studies on children with special needs mainly concentrate on disease-oriented health problems and neglect the positive aspects of quality of life. In this study the quality of life of children withCystic Fibrosis andMyelomeningocele, 951 children in all, in the five Nordic countries is compared to that of a random sample of 10290 children. The aim of the study was to see how the issue of equity, a main objective of the WHO health for all policy, has been met in the Nordic countries. Quality of life is defined as one of the essential resources of a population in terms of external, inter-personal and personal conditions. The study shows that children with disabilities have, and perceive that they live in good material and socio-economic conditions. However, the personal psychological conditions are less favourable, which indicates that this is a priority area for future health policies.
Zusammenfassung
Studien von Kindern, die besonderer Betreuung bedürfen, sind in der Regel vorwiegend auf die krankheitsbezogenen Gesundheitsprobleme ausgerichtet und die Lebensqualität wird vernachlässigt. In der vorliegenden Studie geht es um die Lebensqualität von Kindern, die an Zystischer Fibrose oder einer Myelomeningozele leiden. Es werden 951 Patienten aus fünf nordeuropäischen Ländern mit einer Zufallstichprobe verglichen, die 10290 Kinder umfasst. Wie weit wurde in diesem Bereich die Forderung der Chancengleichheit erfüllt? Diese Forderung gehört ja zu den Hauptzielen des WHO-Aktionsprogrammes “Gesundheit für alle 2000”. Der Begriff Lebensqualität bezieht sich dabei auf die Umwelt, die zwischenmenschlichen Beziehungen und die Situation des Einzelnen. Die Resultate zeigen, dass behinderte Kinder in den nordeuropäischen Staaten unter guten materiellen und sozioökonomischen Bedingungen leben und dies auch so empfinden. Hingegen ist die psychologische Situation weniger zufriedenstellend, was dazu führen muss, in Zukunft diesem Bereich mehr Beachtung zu schenken.
Résumé
Des études faites sur les enfants ayant des besoins particuliers se sont surtout concentrées sur des problèmes de santé orientés vers les maladies et ont négligé les aspects positifs de la qualité de vie. Dans cette étude-ci, la qualité de vie des enfants souffrant de CF (Cystic Fibrosis) et de MMC (Myelomeningocele), en tout 951 enfants dans les cinq pays nordiques, a été comparée avec un échantillon aléatoire de 10290 enfants. L'objet de cette étude était de voir comment la question d'équité, un des buts principaux dans les directives de l'OMS «Santé pour Tous», avait été traitée dans les pays nordiques. L'étude témoigne que les enfants souffrant d'incapacités trouvent qu'ils vivent dans de bonnes conditions au point de vue matériel et socioéconomique. Cependant, les conditions personnelles et psychologiques sont moins favorables, et ce champ-ci doit être une priorité dans la future politique de santé.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Mahler H. The Health-for-All-Movement—a Role for a Public Health School? Köhler L (ed). In: Folkhälsovetenskap —Ett nordiskt perspektiv. Göteborg: the Nordic School of Public Health. NHV-Report 1989:2, pp 13–24.
Targets for Health for All. Copenhagen: WHO, 1985.
Naess S. Quality of Life Research. Oslo: Institute of Appl Soc Research 1987.
Kajandi M. Quality of life (Swe). A literature study of quality of life as a concept of behavioural science and a suggestion for a definition. Uppsala: Ulleråkers sjukhus, 1981.
Lindström B. Quality of Life in Families with Children (Swe). In: Köhler L (ed), Children and Child Families in the Nordic Countries: a Study of Welfare, Health and Quality of Life. Lund: Studentlitteratur, 1990.
Lindström B, Köhler L. Youth, disability and quality of life. Pædiatrician 1991;18:121–128.
Lindström B. Quality of life in children. In: Fasting U, Michelsen N, Sommer D (eds). A revolution at knee level (Danish). Copenhagen: Munksgaard Sosial pedagogisk serie, 1988:111–128.
Meyerowitz JH, Kaplan HB. Familial responses to stress: the case of cystic fibrosis. Soc Sci Med 1967;1:249–266.
Salk L, Hilgartner M, Granich B. The psycho-social impact of hemophilia on the patient and his family. Soc Sci Med 1972;6:491–505.
Markova I, MacDonald K, Forbes C. Impact of hemophilia on child-rearing practices and parental co-operation. J Child Psychol/Psychiatr 1979;21:153–161.
Pless IB, Satterwhite BB. Chronic illness. In: Haggerty RJ, Roghmann KJ, Pless B (eds). Child Health and the Community. New York: Wiley, 1975.
Tew B, Laurence KM. Mothers, brothers and sisters of patients with spina bifida. Dev Med Child Neurol 1973;29:69–76.
Sabbeth B. Understanding the impact of chronic childhood illness on families. Pediatr Clin 1984;31:47–57.
Sommerschild H, Ingstadt B. Families with Disabled Children (Norwegian). Oslo: Statens Institutt for Folkehelse, SIFF-Rapport 9, 1983.
Featherstone HA. A Difference in the Family. Life with a disabled child. New York: Basic Books, 1980.
Falkman C. Cystic fibrosis — a psychological study of 52 children and their families. Acta Pædiatr Scand 1977; (suppl 269):1–93.
Simpson OW, Smith MA. Lightening the load for parents of children with diabetes. American J Maternal Child Nursing 1979;4:293–296.
Boyle IR, di Sant'Agnese PA, Sack S, et al Emotional adjustment of adolescents and young adults with cystic fibrosis. J Pediatr 1976;88:318–326.
Holroyd J, Guthrie D. Stress in families with neuromuscular disease. J Clin Psychol 1979;35:734–739.
Swift CR, Seidman F, Stein H. Adjustment problems in juvenile diabetes. Psychosom Med 1967;29:555–571.
Grey MJ, Genel M, Tamborlane WV. Psychosocial adjustment of latency-aged diabetics. Determinants and relationship to control. Pediatrics 1980;65/1:69–73.
Walker DK, Jacobs FH. Public school programs for chronically ill children. In: Hobbs N, Perrin JM, Freys HT (eds). Issues in the Care of Children with Chronic Illness. San Francisco: Jossey Bass, 1985, chap. 30.
La Baron, Currie D, Zelzer L. Coping with spinal cord injury in adolescence. In: Blum RW (ed). Chronic Illness and Disabilities in Childhood and Adolescence. New York: Grune & Stratton, 1984:277–298.
Hagelsteen J, Lagergren J, Lie H et al. Disability in children with myelomeningocele: a Nordic study. Acta pediatr Scand 1989;78:721–727.
Köhler L. Children and Child Families in the Nordic Countries (Swe): A Study of Welfare, Health and Quality of Life. Lund: Studentlitteratur, 1990.
Human Development Report. UNDP. Oxford and New York: Oxford University Press, 1990.
Morris MD. Measuring the condition of the World's Poor: the Physical Quality of Life Index. New York: Pergamon Press, 1979.
Jordan TE. Developing an International Index of Quality of Life for Children. The NICQL Index. JRSH 1983;4:127–130.
State of the World's Children. UNICEF. Oxford and New York: Oxford University Press, 1992.
Author information
Authors and Affiliations
Rights and permissions
About this article
Cite this article
Lindström, B., Eriksson, B. Social pediatrics. Soz Präventivmed 38, 83–89 (1993). https://doi.org/10.1007/BF01318465
Issue Date:
DOI: https://doi.org/10.1007/BF01318465