First information and support provided to parents of children with Down syndrome in Sweden: Clinical goals and parental experiences

Acta Paediatrica, International Journal of Paediatrics

Volumn 91, Issue 12, 2002, Pages 1344-1349

  Hedov, G ^a   Wikblad, K ^b   Anneren G ^a  

^a UPPSALA UNIVERSITY   (Sweden)

^b LINKÖPING UNIVERSITY   (Sweden)

Author keywords

Down syndrome; First information; Parents

Indexed keywords

ADOLESCENT; ARTICLE; CHILD; CHILD PARENT RELATION; DOWN SYNDROME; EXPERIENCE; FEMALE; HEALTH CARE NEED; HUMAN; MAJOR CLINICAL STUDY; MALE; MENTAL DEFICIENCY; PARENTAL BEHAVIOR; PATIENT INFORMATION; PRIORITY JOURNAL; RETROSPECTIVE STUDY; RISK BENEFIT ANALYSIS; SOCIAL SUPPORT; SWEDEN;

ADAPTATION, PSYCHOLOGICAL; ADULT; CHILD; CHRONIC DISEASE; COMMUNICATION; DISABLED CHILDREN; DOWN SYNDROME; HUMANS; PARENTS; PATIENT EDUCATION; PROFESSIONAL-FAMILY RELATIONS; RETROSPECTIVE STUDIES; SOCIAL SUPPORT; SWEDEN;

EID: 12244307900     PISSN: 08035253     EISSN: None     Source Type: Journal    
DOI: 10.1111/j.1651-2227.2002.tb02832.x     Document Type: Article

References (24)

1. Gustavson K-H. Mental development delays. In: Lindsten J, Iselius L, editors. Clinical genetics. Stockholm: Natur och Kultur; 1987. p. 259-66
2. Pueschel SM, Annerén G, Durlach R, Flores J, Sustrová M, Verma IC. Goals for optimal medical care of persons with Down syndrome. International League of Societies for Persons with Mental Handicap (ILSMH). Acta Pædiatr 1995; 84: 823-7
3. Garwick AW, Patterson J, Bennett FC, Blum RW. Breaking the news, how families first learn about their child's condition. Arch Pediatr Adolesc Med 1995; 149: 991-7
4. Cullberg J. Kris och utveckling: en psykodynamisk och social-psykiatrisk studie [Crisis and development: a psychodynamic and social-psychiatric study]. Stockholm: Natur och Kultur; 2000
5. Carr J. Mongolism: telling the parents. Dev Med Child Neurol 1970; 12: 213-21
6. Spain B, Wigley G. editors. Right from the start. London: Mencap; 1975
7. Cunningham CC, Morgan PA, McGucken RB. Down's syndrome: is dissatisfaction with disclosure of diagnosis inevitable? Dev Med Child Neurol 1984; 26: 33-9
8. Cooley C. Supporting the family of the newborn with Down syndrome. Compr Ther 1993; 19: 111-5
9. Dahn I. Mänskliga möten inom vård och omsorg [Humane meetings in health care]. Helsingborg: Sveriges Utbildningsradio AB; 1989
10. Kollberg E. editor, Children with Down syndrome. The parents' perspective. 1st ed. Stockholm: Natur och Kultur; 1997
11. Van Riper M. Living with Down syndrome: the family experience. Down Synd Quart 1999; 4: 1-7
12. Rastelli L, Pothos M. Moving into the 21st century: parental satisfaction with the disclosure of the diagnosis of Down syndrome. New directions in Down syndrome. Down Synd Quart (Conference) Toronto, Canada, 2000
13. Hedov G, Annerén D, Wikblad K. Swedish parents of children with Down syndrome: parental stress and sense of coherence in relation to employment rate and time spent in child care. Scand J Caring Sci 2002; 16: 424-430
14. Hedov G, Annerén G, Wikblad K. Self-perceived health in Swedish parents of children with Down's syndrome. Qual Life Res 2000; 9: 415-22
15. Cunningham C. Telling parents their child has got a disability. In: Mittler P, Mittler H, editors. Innovations in family support for people with learning disabilities. Paul H Brookes 1995: 1-31
16. Annerén G. A medical care and support program for families with multiple congenital anomalies - mental retardation syndromes (MCA/MR). Upsala J Med Sci 1987; Suppl 44: 221-25
17. Hedov G. Empiric pilot test of two questionnaires in families of children with Down's syndrome. Unpublished academic thesis, Center for Caring Sciences at Uppsala University, Sweden, 1996
18. Wewers ME, Lowe NK. A critical review of visual analogue scales in the measurement of clinical phenomena. Res Nurs Health 1990; 13: 227-36
19. Cline ME, Hermann J, Shaw ER, Morton RD. Standardization of the visual analogue scale. Nurs Res 1992; 41: 378-80
20. Quine L, Rutter DR. First diagnosis of severe mental and physical disability: a study of doctor-parents communication. J Child Psychol Psychiatry 1994; 35: 1273-87
21. Hasnat MJ, Graves P. Disclosure of developmental disability: a study of parent satisfaction and the determinants of satisfaction. J Paediatr Child Health 2000; 36: 32-5
22. Rubin DC, Kozin M. Vivid memories. Cognition 1984; 16: 81-95
23. Carr J. Six weeks to twenty-one years: a longitudinal study of children with Down's syndrome and their families. J Child Psychol Psychiatry 1988; 29: 407-31
24. Tuong Thi PB. Diagnostic assessment of developmental disability: the parents' view. J Clin Nurs 1994; 3: 147-53