Family experiences associated with a child's diagnosis of fragile X or down syndrome: Evidence for disruption and resilience

Mental Retardation

Volumn 43, Issue 4, 2005, Pages 255-267

  Poehlmann, Julie ^a   Clements, Melissa ^a   Abbeduto, Len ^a   Farsad, Venous ^a  

^a UNIVERSITY OF WISCONSIN MADISON   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADAPTIVE BEHAVIOR; ADOLESCENT; ADULT; ARTICLE; CHILD; CHILD BEHAVIOR; CHILD PARENT RELATION; DOWN SYNDROME; EMOTION; FAMILY HEALTH; FAMILY RELATION; FEMALE; FRAGILE X SYNDROME; HOSPITALIZATION; HUMAN; MALE; MENTAL STRESS; MIDDLE AGED; PSYCHOLOGICAL ASPECT;

ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; ADULT; CHILD; CHILD BEHAVIOR; DOWN SYNDROME; EMOTIONS; FAMILY HEALTH; FAMILY RELATIONS; FEMALE; FRAGILE X SYNDROME; HUMANS; MALE; MIDDLE AGED; PARENT-CHILD RELATIONS; SEVERITY OF ILLNESS INDEX; STRESS, PSYCHOLOGICAL;

EID: 24744458436     PISSN: 00476765     EISSN: None     Source Type: Journal    
DOI: 10.1352/0047-6765(2005)43[255:FEAWAC]2.0.CO;2     Document Type: Article

References (39)

1. Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M. W., Orsmond, G., & Murphy, M. M. (2004). Psychological well-being and coping in mothers of youths with autism, Down syndrome, and fragile X syndrome. American Journal on Mental Retardation, 109, 237-254.
2. Bailey, D. B., Skinner, D., Hatton, D., & Roberts, J. (2000). Family experiences and factors associated with the diagnosis of fragile X syndrome. Developmental and Behavioral Pediatrics, 21, 315-321.
3. Batshaw, M. (1997). Children with disabilities (4th ed.). Baltimore: Brookes.
4. Blacher, J. (1984). Sequential stages of parental adjustment to the birth of a child with handicaps: Fact or artifact? American Journal of Mental Deficiency, 89, 653-656.
5. Burden, R., & Thomas, D. (1986). A further perspective on parental reaction to handicap. Exceptional Child, 33, 140-145.
6. Carmichael, B., Pembrey, M., Turner, G., & Barnicoat, A. (1999). Diagnosis of fragile-X syndrome: The experiences of parents. Journal of Intellectual Disability Research, 43, 47-53.
7. Collins, K. S., Hughes, D. L., Doty, M. M., Ives, B. L., Edwards, J. N., & Tenney, K. (2002). Diverse communities, common concerns: Assessing health care quality for minority Americans. New York: The Commonwealth Fund.
8. Cooper-Patrick, L., Gallo, J. J., Gonzales, J. J., Vu, H. T., Powe, N. R., Nelson, C., & Ford, D. E. (1999). Race, gender and partnership in the patient-physician relationship. Journal of the American Medical Association, 282, 583-589.
9. Costigan, C. L., Floyd, F. J., Harter, K. S., & McClintock, J. C. (1997). Family process and adaptation to children with mental retardation: Disruption and resilience in family problem-solving interactions. Journal of Family Psychology, 11, 515-529.
10. Dykens, E. M., Hodapp, R. M., & Finucane, B. M. (2000). Genetics and mental retardation syndromes: A new look at behavior and interventions. Baltimore: Brookes.
11. Emde, R., & Brown, C. (1978). Adaptation to the birth of a Down's syndrome infant: Grieving and maternal attachment. American Academy of Child Psychology, 17, 299-323.
12. Feinstein, C., & Reiss, A. L. (1998). Autism: The point of view from fragile X studies. Journal of Autism and Developmental Disabilities, 28, 393-405.
13. Ferguson, P. M. (2002). A place in the family: An historical interpretation of research on parental reactions to having a child with a disability. Journal of Special Education, 36, 124-130.
14. Ferguson, P. M., Ferguson, D. L., & Taylor, S. J. (1992). The future of interpretivism in disability studies. In P. M. Ferguson, D. L. Ferguson, & S. J. Taylor (Eds.), Interpreting disability: A qualitative reader. New York: Teachers College Press.
15. Fidler, D. J., Hodapp, R. M., & Dykens, E. M. (2000). Stress in families of young children with Down syndrome, Williams syndrome, and Smith-Magenis syndrome. Early Education and Development, 11, 395-406.
16. Fiscella, K., Franks, P., Gold, M. R., & Clancy, C. M. (2000). Inequality in quality: Addressing socioeconomic, racial, and ethnic disparities in health care. Journal of the American Medical Association, 283, 2579-2584.
17. Hagerman, R. J., & Lempe, M. E. (1999). Fragile X syndrome. In S. Goldstein & C. R. Reynolds (Eds.), Handbook of neurodevelopmental and genetic disorders in children. New York: Guildford Press.
18. Hastings, R. P., & Taunt, H. M. (2002). Positive perceptions in families of children with developmental disabilities. American Journal on Mental Retardation, 107, 116-127.
19. Hauser-Cram, P., Warfield, M. E., Shonkoff, J. P., & Krauss, M. W. (2001). Children with disabilities: A longitudinal study of child development and parent well-being. Monographs of the Society for Research in Child Development, 66 (3, Serial No. 266).
20. Helff, C. M., & Glidden, L. M. (1998). More positive or less negative? Trends in research on adjustment of families rearing children with developmental disabilities. Mental Retardation, 36, 457-464.
21. Hodapp, R. M., Ly, T. M., Fidler, D. J., & Ricci, L. A. (2001). Less stress, more rewarding: Parenting children with Down syndrome. Parenting: Science and Practice, 1, 317-337.
22. Hornby, G. (1995). Fathers' views of the effects on their families of children with Down syndrome. Journal of Child and Family Studies, 4, 103-117.
23. Johnston, C., Hessl, D., Blasey, C., Eliez, S., Erba, H., Dyer-Friedman, J., Glaser, B., & Reiss, A. L. (2003). Factors associated with parenting stress in mothers of children with fragile X syndrome. Journal of Developmental and Behavioral Pediatrics, 24, 267-269.
24. Kim, H. W., Greenberg, J. S., Seltzer, M. M., & Krauss, M. W. (2003). The role of coping in maintaining the psychological well-being of mothers of adults with intellectual disability and mental illness. Journal of Intellectual Disability Research, 47, 313-327.
25. Miltiades, H. B., & Pruchno, R. (2002). The effect of religious coping on caregiving appraisals of mothers of adults with developmental disabilities. The Gerontologist, 42, 82-91.
26. Oppenheim, D., Wamboldt, F. S., Gavin, L. A., Renouf, A. G., & Emde, R. N. (1996). Couples' co-constructions of the story of their child's birth: Associations with marital adaptation. Journal of Narrative and Life History, 6, 1-21.
27. Pianta, R. C., & Marvin, R. S. (1992). The reaction to diagnosis interview. Unpublished interview manual, University of Virginia, Charlottesville.
28. Pruchno, R., Patrick, J. H., & Burant, C. J. (1997). African American and White mothers of adults with chronic disabilities: Caregiving burden and satisfaction. Family Relations, 46, 335-346.
29. Sarismki, K. (1997). Behavioural phenotypes and family stress in three mental retardation syndromes. European Child and Adolescent Psychiatry, 6, 26-31.
30. Seltzer, M. M., & Heller, T. (1997). Families and caregiving across the life course: Research advances on the influence of context. Family Relations, 46, 321-323.
31. Shonkoff, J. P., Hauser-Cram, P., Krauss, M. W., & Upshur, C. C. (1992). Development of infants with disabilities and their families. Monographs of the Society for Research in Child Development, 57.
32. Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks: Sage.
33. Trout, M. D. (1983). Birth of a sick or handicapped infant: Impact on the family. Child Welfare, 62, 337-348.
34. Valentine, D. P., McDermott, S., & Anderson, D. (1998). Mothers of adults with mental retardation: Is race a factor in perceptions of burdens and gratifications? Families in Society, 79, 577-584.
35. Van Riper, M. (1999). Living with Down syndrome: The family experience. Down Syndrome Quarterly, 4, 1-7.
36. Van Riper, M., Pridham, K., & Ryff, C. (1992). Symbolic interactionism: A perspective for understanding parent-nurse interactions following the birth of a child with Down syndrome. Maternal Child Nursing Journal, 20, 21-40.
37. Van Riper, M., & Selder, F. (1989). Parental responses to the birth of a child with Down syndrome. In J. Rainer, S. Rubin, M. Bartalos, S. Maidman, A. Kutscher, K. Anyane, P. Taterka, & J. Malin (Eds.), Genetic disease: The unwanted inheritance (pp. 59-76). New York: Haworth Press.
38. Van Ryn, M., & Burke, J. (2000). The effect of patient race and socioeconomic status on physicians' perceptions of patients. Social Science and Medicine, 50, 813-828.
39. Waisbren, S. E. (1980). Parents' reactions after the birth of a developmentally disabled child. American Journal of Mental Deficiency, 84, 345-351.