Quality of Life Research

, Volume 9, Issue 4, pp 415–422 | Cite as

Self-perceived health in Swedish parents of children with Down's syndrome

  • G. Hedov
  • G. Annerén
  • K. Wikblad


In this comparative study, self-perceived health was investigated in 165 parents of 86 children with Down's syndrome (DS), using the Swedish version of the SF-36 questionnaire. Questionnaires were mailed to parents of children with DS in a defined Swedish population. The results were compared with those in a randomised control group of parents from the Swedish SF-36 norm population. Mothers and fathers replied separately. Student's t-test with the Bonferroni correction was used for multiple statistical comparisons. The mothers of children with DS (‘DS mothers’) had significantly lower, less favourable scores than did the fathers of DS children (‘DS fathers’) in the Vitality (p < 0.0005) domain. Further, DS mothers spent significantly more time in caring for their child with DS than did the DS fathers (p < 0.0001). DS mothers also had lower scores than the mothers of the control group in the Vitality (p < 0.001) and Mental Health (p < 0.001) domains. DS fathers and control fathers differed significantly in the Mental Health domain (p < 0.002), but not otherwise. In conclusion, DS mothers showed poorer health than their spouses and the control mothers. No differences similar to those found between the DS mothers and DS fathers were observed between control mothers and control fathers.

Down's syndrome Fathers Mothers Parents Self-perceived health 


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  1. 1.
    Featherstone H. A Difference in the Family. New York: Basic Books, 1980.Google Scholar
  2. 2.
    Seligman M, Darling RB. Ordinary Parents Special Chil-dren: A System Approach to Childhood Disability. New York: The Guildford Press, 1989.Google Scholar
  3. 3.
    Gustavson K-H. Mental Developmental Delays. In: Lind-sten J, Iselius L (eds). Clinical Genetics. Stockholm: Natur och Kultur, 1987: 259–266.Google Scholar
  4. 4.
    Beckman PJ. Comparison of mothers and fathers' perception of effect of young children with and without disabilities. Am J Met Retard 1995; 95: 585–595.Google Scholar
  5. 5.
    Dyson L. Parents of young children with handicaps: Parental stress and functioning. Am J Ment Retard 1991; 95: 623–629.Google Scholar
  6. 6.
    Pelchat P, Ricard N, Bouchard J-M, et al. Adaptation of parents in relation to their 6-month-old infant's type of disability. Child: Care Health and Development 1999; 25: 377–397.Google Scholar
  7. 7.
    Damroch SP, Perry LA. Self-perceived adjustment, chronic sorrow, and coping of parent of children with down's syndrome. Nurs Res 1989; 3: 25–30.Google Scholar
  8. 8.
    Harvey JM, O'Callaghan MJ, Vines B. Prevalence of ma-ternal depression and its relationship to ADL skills in children with developmental delay. J Paediatr Child Health 1997; 33: 42–46.Google Scholar
  9. 9.
    Trute B. Gender di€erences in the psychological adjustment of parents of young, developmentally disabled children. J Child Psychol Psychiatr 1995; 36: 1225–1242.Google Scholar
  10. 10.
    Caplan G. Mastery of stress: Psychosocial aspects. Am J Psychiatr 1981; 138: 413–420.Google Scholar
  11. 11.
    Bristol MM, Gallagher JJ, Schopler E. Mothers and fathers of young developmentally disabled and non-disabled boys: Adaptation and spousal support. Develop Psychol 1988; 24: 441–451.Google Scholar
  12. 12.
    Friedrich WN, Wilturner LT, Cohen DS. Coping resources and parenting mentally retarded children. Am J Ment Defic 1985; 90: 130–139.Google Scholar
  13. 13.
    Krauss MW. Child-related and parenting stress: similarities and di€erences between mothers and fathers of children with disabilities. Am J Ment Retard 1993; 97: 393–404.Google Scholar
  14. 14.
    Barnett SW, Boyce GC. Effects of Children with Down's syndrome on Parent's Activities. Am J Ment Retard 1995; 100: 115–127.Google Scholar
  15. 15.
    Patterson JM, Leonard BJ, Titus JC. Home care for medically fragile children: Impact on family health and well-being. J Develop Behav Pediatr 1992; 13: 248–255.Google Scholar
  16. 16.
    So Kum-Tang C, Cheng P. Coping and psychological dis-tress of chinese parents of children with Down's syndrome. Ment Retard 1995; 33: 10–20.Google Scholar
  17. 17.
    Romans-Clarkson SE, Clarkson JE, Dittmer ID, et al. Impact of a handicapped child on mental health of parents. Br Med J 1986; 293: 1395–1397.Google Scholar
  18. 18.
    BraÈ nholm I-B, Degerman E-A. Life satisfaction and activ-ity preferences in parents of Down's syndrome children. Scand J Soc Med 1992; 20: 37–44.Google Scholar
  19. 19.
    Westbom L. Impact of chronic illness in children on parental living conditions. A population-based study in a Swedish primary care district. Scand J Prim Health Care 1992; 10: 83–90.Google Scholar
  20. 20.
    Sullivan M, Karlsson J, Ware JE. The Swedish SF36 Health Survey, I: Evaluation of data quality, scaling assumptions, reliability and construct validity across general population in Sweden. Soc Sci Med 1995; 41: 1349–1358.Google Scholar
  21. 21.
    McHorney CA, Ware JE Jr, Raczek AE. The MOS 36-Item Short-Form Health Survey (SF-36): II. Psychometrics and clinical tests of validity in measuring physical and mental health constructs. Med Care 1993; 31: 247–263.Google Scholar
  22. 22.
    Cronbach LJ. Coefficient alpha and the internal structure of tests. Psychometrika 1951; 16: 297–334.Google Scholar
  23. 23.
    Ware JE, Snow KK, Kosinski M, Gandek B. SF-36 Health Survey Manual and Interpretation Guide. New England Medical Centre, The Health Institute, Boston, Massachusetts, 1993.Google Scholar
  24. 24.
    Jenkinson C, Coulter A, Wright L. Short form (SF-36) health survey questionnaire: normative data for adults of working age. Br Med J 1993; 306: 1437–1440.Google Scholar
  25. 25.
    Polit DF, Hungler BP. Nursing Research. Principles and Methods. Philadelphia: JP Lippincott Company (5th edn), 1995.Google Scholar
  26. 26.
    Parke R. Fathers, families and support systems. In: Gallagher J, Vietze P (eds), Families of Handicapped Persons. Baltimore: Paul H Brookes, 1986: 101–113.Google Scholar
  27. 27.
    Taanila A, Kokkonen J, Jarvelin MR. The long-term e€ects of children's early-onset disability on marital relationship. Dev Med & Child Neurol 1996; 38: 567–577.Google Scholar
  28. 28.
    Bruce EJ, Schultz CL, Smyrnios KX, Schultz NC. Grieving related to development: A preliminary comparison of three age cohorts of parents of children with intellectual disability. Br J Med Psychol 1994; 67: 37–52.Google Scholar
  29. 29.
    Cairns I. The health of mothers and fathers with a child with a disability. Health Visit 1992; 65: 238–239.Google Scholar
  30. 30.
    West A. The piloting of a group for the fathers of children with Down syndrome. Child: Care, Health & Dev 1998; 24: 289–294.Google Scholar
  31. 31.
    Upp till 18: Fakta om barn och ungdom. [Up to 18, Facts about children and adolescents] Barnombudsmannen. Landgren-Möller E (eds.), Bulls tryckeri, Halmstad, 1998: 22.Google Scholar
  32. 32.
    Van Riper M, Ryff C, Pridman K. Parental and family well-being in parents of children with Down's syndrome: A comparative study. Res in Nurs & Health 1992; 15: 227–235.Google Scholar
  33. 33.
    Beresford BA. Resources and strategies: how parents cope with the care of a disabled child. J Child Psychol Psychiat 1994; 35: 171–209. 422Google Scholar

Copyright information

© Kluwer Academic Publishers 2000

Authors and Affiliations

  • G. Hedov
    • 1
  • G. Annerén
    • 2
  • K. Wikblad
    • 3
  1. 1.Unit of Paediatrics, Department of Women's and Children's HealthUppsala UniversityUppsalaSweden
  2. 2.Unit of Clinical Genetics, Department of Genetics and PathologyUppsala UniversityUppsalaSweden
  3. 3.Department of Public Health and Caring SciencesUppsala UniversityUppsalaSweden

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