Stress and coping in families of children with Smith-Magenis syndrome

Journal of Intellectual Disability Research

Volumn 42, Issue 5, 1998, Pages 331-340

  Hodapp, R M ^a   Fidler, D J ^a   Smith, A C M ^a  

^a UNIVERSITY OF CALIFORNIA   (United States)

Author keywords

Coping; Families; Mental retardation; Smith Magenis syndrome; Stress

Indexed keywords

ARTICLE; BEHAVIOR DISORDER; CHILD; CLINICAL ARTICLE; COPING BEHAVIOR; FAMILY LIFE; FEMALE; HUMAN; INTERVIEW; MALE; MENTAL STRESS; QUESTIONNAIRE; SMITH MAGENIS SYNDROME; SOCIALIZATION;

ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; CHILD; FAMILY; FAMILY HEALTH; FEMALE; HUMANS; MALE; MENTAL RETARDATION; QUESTIONNAIRES; SOCIAL SUPPORT; STRESS, PSYCHOLOGICAL; SYNDROME;

EID: 0031765717     PISSN: 09642633     EISSN: None     Source Type: Journal    
DOI: 10.1046/j.1365-2788.1998.00148.x     Document Type: Article

References (42)

1. Achenbach T. M. (1991) Manual for the Child Behavior Checklist - 4-18 - and 1991 Profiles. University of Vermont, Burlington, VT.
2. Beckman P. J. (1983) Influence of selected child characteristics on stress in families of handicapped infants. American Journal of Mental Deficiency 88, 150-6.
3. Beckman P. J. (1991) Comparison of mothers' and fathers' perceptions of the effect of young children with and without disabilities. American Journal on Mental Retardation 95, 585-95.
4. Cahill B. M. & Glidden L. M. (1996) Influence of child diagnosis on family and parental functioning: Down syndrome versus other disabilities. American Journal on Mental Retardation 101, 149-60.
5. Colley A. F., Leversha M. A., Voullaire L. E. & Rogers J. G. (1990) Five cases demonstrating the distinctive behavioral features of chromosome deletion 17 (p.11.2) (Smith-Magenis syndrome). Journal of Pediatrics and Child Health 26, 17-21.
6. Donovan A. (1988) Family stress and ways of coping with adolescents who have handicaps: maternal perceptions. American Journal on Mental Retardation 92, 502-9.
7. Dykens E. M. (1995) Measuring behavioral phenotypes: provocations from the 'new genetics.' American Journal On Mental Retardation 99, 522-32.
8. Dykens E. M. & Cassidy S. B. (1996) Prader-Willi syndrome: genetic, behavioral, and treatment issues. Child and Adolescent Psychiatric Clinics of North America 5, 913-27.
9. Dykens E. M. & Clarke D. J. (1997) Correlates of maladaptive behavior in persons with 5p-(cri du chat) syndrome. Developmental Medicine and Child Neurology 39, 752-6.
10. Dykens E. M. & Cohen D. J. (1996) Effects of Special Olympics International on social competence in persons with mental retardation. Journal of the American Academy of Child and Adolescent Psychiatry 35, 223-9.
11. Dykens E. M., Finucane B. M. & Gayley C. (1997) Cognitive and behavioral profiles in persons with Smith-Magenis syndrome. Journal of Autism and Developmental Disorders 27, 203-11.
12. Dykens E. M., Hodapp R. M., Walsh K. K. & Nash L. (1992) Adaptive and maladaptive behavior in Prader-Willi syndrome. Journal of the American Academy of Child and Adolescent Psychiatry 31, 113-16.
13. Dykens E. M. & Kasari C. (1997) Maladaptive behavior in children with Prader-Willi syndrome, Down syndrome, and non-specific mental retardation. American Journal on Mental Retardation 102, 228-37.
14. Dykens E. M., Leckman J. F. & Cassidy S. B. (1996) Obsessions and compulsions in Prader-Willi syndrome. Journal of Child Psychology and Psychiatry 37, 995-1002.
15. Dyson L. L. (1991) Families of young children with handicaps: parental stress and family functioning. American Journal on Mental Retardation 95, 623-9.
16. Dyson L. L. (1993) Response to the presence of a child with disabilities: parental stress and family functioning over time. American Journal on Mental Retardation 98, 20718.
17. Farber B. (1970) Notes about sociological knowledge about families with mentally retarded children. In: Social Work and Mental Retardation (ed. M. Schrieber), pp. 118-24. John Day, New York, NY.
18. Finucane B. M., Konar D., Haas-Givner B., Kurtz M. D. & Scott L. I. (1994) The spasmodic upper-body squeeze: a characteristic behavior in Smith-Magenis syndrome. Developmental Medicine and Child Neurology 36, 78-83.
19. Frey K., Greenberg M. & Fewell R. (1989) Stress and coping among parents of handicapped children: a multi-dimensional perspective. American Journal on Mental Retardation 94, 240-9.
20. Friedrich W. N., Greenberg M. T. & Crnic K. (1983) A short-form of the Questionnaire on Resources and Stress. American Journal of Mental Deficiency 88, 41-8.
21. Greenberg F., Guzzetta V., de Oca-Luna R. M., Magenis R. E., Smith A. M., Richter S. F., Kondo I., Dobyns W. B., Patel P. I. & Lupski J. R. (1991) Molecular analysis of the Smith-Magenis syndrome: a possible continguous-gene syndrome associated with del (17) (p.11.2). American Journal of Human Genetics 49, 1207-18.
22. Greenberg F., Lewis R. A., Potocki L., Glaze D., Parke J., Killian J., Murphy M. A., Williamson D., Brown F., Dutton R., McCluggage C., Friedman E., Sulek M. & Lupski J. (1996) Multi-disciplinary clinical study of Smith-Magenis syndrome (deletion 17p11.2). American Journal of Medical Genetics 62, 247-54.
23. Hodapp R. M. (1995) Parenting children with Down syndrome and other types of mental retardation. In: Handbook of Parenting, Vol. I. How Children Influence Parents (ed. M. Bornstein), pp. 233-53. Erlbaum, Hillsdale, NJ.
24. Hodapp R. M. (1996) Down syndrome: developmental, psychiatric, and management issues. Child and Adolescent Psychiatric Clinics of North America 5, 881-94.
25. Hodapp R. M. (1997) Direct and indirect behavioral effects of different genetic disorders of mental retardation. American Journal on Mental Retardation 102, 67-79.
26. Hodapp R. M. (1999) Indirect effects of genetic mental retardation disorders: theoretical and methodological issues. International Review of Research in Mental Retardation 22, in press.
27. Hodapp R. M. & Dykens E. M. (1994) Mental retardation's two cultures of behavioral research. American Journal on Mental Retardation 98, 675-87.
28. Hodapp R. M., Dykens E. M. & Masino L. L. (1997a) Families of children with Prader-Willi syndrome: stress-support and relations to child characteristics. Journal of Autism and Developmental Disorders 27, 11-24.
29. Hodapp R. M., Wijma C. A. & Masino L. L. (1997b) Families of children with 5p-(cri du chat) syndrome: familial stress and sibling reactions. Developmental Medicine and Child Neurology 39, 757-61.
30. Holroyd J. (1974) The Questionnaire on Resources and Stress: an instrument to measure family responses to a handicapped family member. Journal of Community Psychology 2, 92-4.
31. Kazak A. (1987) Families with disabled children: stress and social supports in three samples. Journal of Child Abnormal Psychology 15, 137-46.
32. Margalit M., Shulman S. & Stuchiner S. (1987) Behavior disorders and mental retardation: the family system perspective. Research in Developmental Disabilities 10, 315-26.
33. Minnes P. M. (1988) Family stress associated with a developmentally handicapped child. International Review of Research in Mental Retardation 15, 195-226.
34. Scott R. L., Sexton D., Thompson B. & Wood T. A. (1989) Measurement characteristics of a short form of the Questionnaire on Resources and Stress. American Journal on Mental Retardation 94, 331-9.
35. Seltzer M. & Ryff C. (1994) Parenting across the lifespan: the normative and nonnormative cases. Life-Span Development and Behavior 12, 1-40.
36. Smith A. C. M., Dykens E. M. & Greenberg F. (1998a) Sleep disturbance in Smith-Magenis syndrome (del 17 p.11.2). American Journal of Medical Genetics 81, 186-91.
37. Smith A. C. M., Dykens E. M. & Greenberg F. (1998b) Behavioral phenotype of Smith-Magenis syndrome (del 17 p.11.2) American Journal of Medical Genetics, 81, 179-85.
38. Smith A. C. M., MaGavran L., Robinson J., Waldstein G., Macfarlane J., Zonona J., Reiss J., Llahr M., Allen L. & Magenis E. (1986) Interstitial deletion of (17) (p.11.2) in nine patients. American Journal of Medical Genetics 24, 421-32.
39. Sparrow S. S., Balla D. & Cicchetti D. V. (1983) The Vineland Scales of Adaptive Behavior - Manual. American Guidance Service, Circle Pines, MN.
40. Sparrow S. S., Carter A. S. & Cicchetti D. V. (1995) Vineland Screener: overview, reliability, validity, administration, and scoring. Unpublished manuscript, Yale University.
41. Stratton R. F., Dobyns W. B., Greenberg F., DeSana J. B., Moore C., Fidone G., Runge G. H., Feldman P., Sekhon G. S., Pauli R. M. & Ledbetter D. H. (1986) Interstitial deletion of (17) (p11.2). Report of six additional patients with a new chromosome deletion syndrome. American Journal of Medical Genetics 24, 421-32.
42. Wikler L. (1986) Periodic stresses in families of mentally retarded children: an exploratory study. American Journal of Mental Deficiency 90, 703-6.