Parents' perceptions of functioning in families having a child with a genetic condition

Journal of Genetic Counseling

Volumn 16, Issue 4, 2007, Pages 481-492

  Knafl, Kathleen A ^a   Knafl, George J ^a   Gallo, Agatha M ^b   Angst, Denise ^c  

^a OREGON HEALTH AND SCIENCE UNIVERSITY   (United States)

^b UNIVERSITY OF ILLINOIS AT CHICAGO   (United States)

^c ADVOCATE HEALTH CARE   (United States)

Author keywords

Cluster analysis; Family research; Genetic condition in childhood

Indexed keywords

ADOLESCENT; ADULT; APGAR SCORE; ARTICLE; CHILD; CLUSTER ANALYSIS; FAMILY FUNCTIONING; FEMALE; FUNCTIONAL STATUS; GENETIC ANALYSIS; GENETIC COUNSELING; GENETIC DISORDER; HUMAN; MAJOR CLINICAL STUDY; MALE; PATIENT SATISFACTION; PERCEPTION; QUALITY OF LIFE; QUALITY OF LIFE INDEX; VALIDITY;

ACTIVITIES OF DAILY LIVING; ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; ADULT; ATTITUDE TO HEALTH; CHILD; CHILD, PRESCHOOL; COST OF ILLNESS; FAMILY RELATIONS; FEMALE; GENETIC COUNSELING; GENETIC DISEASES, INBORN; GENETIC SCREENING; HUMANS; MALE; MIDDLE AGED; PARENTS; PERSONALITY INVENTORY; QUALITY OF LIFE;

EID: 34548157731     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-006-9084-x     Document Type: Article

References (62)

1. Austin, J., & Huberty, T. (1989). Revision of the Family APGAR for use by 8-year olds. Fam Syst Med, 7, 323-323.
2. Balfour-Lynn, I., Madge, S., & Dinwiddie, R. (1995). Testing carrier status of siblings of patients with cystic fibrosis. Arch Dis Child, 72, 167-168.
3. Barbarin, O. (1999). Do parental coping, involvement, religiosity, and racial identity mediate children's psychological adjustment to sickle cell disease? J Black Psychol, 25, 391-426.
4. Biesecker, B. B., & Peters, K. F. (2001). Process studies in genetic counseling: Peering into the black box. Am J Med Genet, 106, 191-198.
5. Blanck, P., & Marti, M. (1996). Genetic discrimination and employment provisions of the American with Disabilities Act: Emerging legal, empirical, and policy implications. Behav Sci Law, 4, 411-432.
6. Chernoff, R., List, D., DeVet, K., & Ireys, H. (2001). Maternal reports of raising children with chronic illnesses: The prevalence of positive thinking. Ambul Pediatr, 1, 104-107.
7. Collins, F., & Jenkins, J. (1997). Implications of the human genome project for the nursing profession. In F. Lashley (Ed.), The genetics revolution: Implications for nursing (pp. 9-11). Washington, DC: American Academy of Nursing.
8. Donnelly, E. (1994). Parents of children with asthma: An examination of family hardiness, family stressors, and family functioning. J Pediatr Nurs, 9(6), 398-408.
9. Eddy, M. E., Carter, B. D., Kronenberger, W. G., Conradsen, S., Eid, N. S., Bourland, S. L., et al. (1998). Parent relationships and compliance in cystic fibrosis. J Pediatr Health Care, 12, 196-202.
10. Failla, S., & Jones, C. (1991). Families of children with developmental disabilities: An examination of family hardiness. Res Nurs Health, 14(1), 41-50.
11. Fanos, J. (1997). Developmental tasks of childhood and adolescence: Implications for genetic testing. Am J Med Genet, 71, 22-28.
12. Fanos, J., & Johnson, J. (1995a). Barriers to carrier testing for adult cystic fibrosis sibs: The importance of not knowing. Am J Med Genet, 59, 85-91.
13. Fanos, J., & Johnson, J. (1995b). Perception of carrier status by cystic fibrosis siblings. Am J Hum Genet, 57, 431-438.
14. Feetham, S. (1999). Families and the genetic revolution: Implications for primary healthcare, education, and research. Fam Syst Health, 17, 27-43.
15. Ferrans, C. E., & Powers, M. J. (1985). Quality of Life Index: Development and psychometric properties. ANS Adv Nurs Sci, 8(1), 15-24.
16. Ferrans, C. E., & Powers, M. J. (1992). Psychometric assessment of the quality of life index. Res Nurs Health, 15, 29-38.
17. Filsinger, E. (1990). Empirical typology, cluster analysis, and family level measurement. In T. Draper & A. Marcos (Eds.), Family variables: Conceptualization, measurement and use. Newbury Park, CA: Sage.
18. Fisher, L., Chesla, C., Bartz, R., Gilliss, C., Skaff, M., Sabogal, F., et al. (1998). The Family and Type 2 Diabetes: A Framework for Intervention. Diabetes Educ, 24(5), 599-607.
19. Fisher, L., Chesla, C., Skaff, M., Gilliss, C., Kanter, R., Lutz, C., et al. (2000). Disease management status: A typology of Latino and Euro-American Patients with type 2 diabetes. Behav Med, 26, 53-65.
20. Gallo, A., Angst, D., Knafl, K. A., Hadley, E., & Smith, C. (2005). Parents sharing information with their children about genetic conditions. J Pediatr Health Care, 19, 267-275.
21. Gallo, A., Knafl, K., & Angst, D. (2001). Parents' interpretation and use of genetic information. Grant HG002036, funded by the National Institutes of Health, National Human Genome Research Institute (NHGRI), Ethical Legal and Social Implications (ELSI) Research Program, from http://crisp.cit.nih.gov.
22. Geller, G. (1995). Cystic fibrosis and the pediatric caregiver: Benefits and burdens of genetic technology. Pediatr Nurs, 21, 57-61.
23. Gilliss, C., & Knafl, K. (1999). Nursing care of families in non-normative transitions: The state of the science and practice. In A. Hinshaw, S. Feetham, & J. Shaver (Eds.), Handbook for clinical nursing research. Newbury Park, CA: Sage.
24. Greely, H. T. (2005). Banning genetic discrimination. New England J Med, 353, 865-867.
25. Hilbert, G., Walker, M., & Rinehart, J. (2000). "In for the long haul": Responses of parents caring for a child with Sturge-Weber Syndrome. J Fam Nurs, 6, 157-179.
26. Holden, E., Chmielewski, D., Nelson, C., Kager, V., & Foltz, L. (1997). Controlling for general and disease-specific effects in child and family adjustment to chronic childhood illness. J Pediatr Psychol, 22(1), 15-27.
27. Hovey, J. (2005). Fathers parenting chronically ill children: Concerns and coping strategies. Issues in Compr Pediatr Nurs, 28, 83-95.
28. Hudson, K., Rothberg, K., Andrews, L., Kahn, L., & Collins, F. (1995). Genetic discrimination in health insurance: An urgent need for reform. Science, 270, 391-393.
29. Johnson, R., & Wichern, D. (1992). Applied multivariate statistical analysis (3rd edn.). Englewood Cliffs, NJ: Prentice Hall.
30. Kass, N. E., Hull, S. C., Natowicz, M. R., Faden, R. R., Plantinga, L., Gostin, L. O., et al. (2004). Medical privacy and the disclosure of personal medical information: The beliefs and experiences of those with genetic and other clinical conditions. Am J Med Genet, 128A, 261-270.
31. Kessler, S. (1997). Psychological aspects of genetic counseling. IX. Teaching and counseling. J Genet Counsel, 6(3), 287-295.
32. Knafl, K., & Gilliss, C. (2002). Families and chronic illness: A synthesis of current literature. J Fam Nurs, 8, 178-198.
33. Loader, S., Caldwell, A., Kozyra, A., Levenkron, K., Boehm, C., Kazazin, H., et al. (1996). Cystic fibrosis carrier population screening in the primary care setting. Am J Hum Genet, 59, 234-247.
34. Lord, B., Wastell, C., & Ungerer, J. (2005). Parent reactions to childhood phenylketonuria. Fam Syst Health, 23, 204-219.
35. McCubbin, H., & Thompson, A. (1991). Family assessment inventories for research and practice. Madison: University of Wisconsin Press.
36. McCubbin, H., Thompson, A., & McCubbin, M. (1996). Family assessment: Resiliency, coping, and adaptation. Madison, WI: University of Wisconsin Publishers.
37. McCubbin, M., & McCubbin, H. (1996). Resiliency in families: A conceptual model of family adjustment and adaptation in response to stress and crisis. In H. McCubbin, A. Thompson & M. MCCubbin. (Eds.), Family assessment: Resiliency coping and adaptation: Inventories for research and practice (pp. 1-64). Madison, WI: University of Wisconsin.
38. McDaniel, S., Rolland, J. S., Feetham, S. L., & Miller, S. (2006). Psychosocial interventions for patients and families coping with genetic conditions. In S. Miller, S. McDaniel, J. Rolland & S. L. Feetham. (Eds.), Individuals, families, and the new era of genetics (pp. 173-196). New York: Norton.
39. Miller, B., & Olson, D. (1990). Types of marital interaction: Using cluster analysis. In T. Draper & A. Marcos. (Eds.), Family variables: Conceptualization, measurement, and use. Newbury Park: CA: Sage.
40. Milligan, G. (1981). A review of Monte Carlo tests of cluster analysis. Multivariate Behav Res, 16, 379-407.
41. Patterson, J., McCubbin, H., & Warwick, W. (1990). The impact of family functioning on health changes in children with cystic fibrosis. Soc Sci Med, 31(2), 159-164.
42. Perrin, E. C., Newacheck, P. W., Pless, I. B., Drotar, D., Gortmaker, S. L., Leventhal, J., et al. (1993). Issues involved in the definition and classification of chronic health conditions. Pediatrics, 91, 787-793.
43. Plantinga, L., Natowicz, M. R., Kass, N. E., & Hull, S. C. (2003). Disclosure, confidentiality, and families: Experiences and attitudes of those with genetic versus nongenetic medical conditions. Am J Med Genet, 119C, 51-59.
44. Press, S. J. (1972). Applied multivariate analysis. New York: Holt, Rinehart, & Winston.
45. Raudenbush, S., & Bryk, A. (2002). Hierarchical linear models: Applications and data analysis methods (2nd edn.). Thousand Oaks, CA: Sage.
46. Rolland, J. S. (1994). Families, illness, and disability. An integrative treatment model. New York: Basic Books.
47. Rolland, J. S., & Williams, J. (2006). Toward a psychosocial model for the new era of genetics. In S. M. Miller, S. McDaniel, J. Rolland, & S. Feetham (Eds.), Individuals, families, and the new era of genetics. Biopsychosocial perspectives (pp. 36-75). New York: Norton.
48. Rolland, J. S., & Williams, J. K. (2005). Toward a biopsychosocial model for 21st-century genetics. Fam Process, 44(1), 3-24.
49. SAS Institute Inc. (2004). SAS/STAT 9.1 user's guide. Cary, NC: SAS Institute Inc.
50. Sawin, K., & Harrigan, M. (1995). Measures of family functioning for research and practice. New York: Springer.
51. Sawyer, E. H. (1992). Family functioning when children have cystic fibrosis. J Fam Nurs, 7(5), 304-311.
52. Smilkstein, G. (1978). The Family APGAR: A proposal for a family function test and its use by physicians. J Fam Pract, 6, 1231-1239.
53. Sorenson, J. R., Jennings-Grant, T., & Newman, J. (2003). Communication about carrier testing within hemophilia A families. Am J Med Genet, 119C, 3-10.
54. Stein, R. E., & Jessop, D. (1982). A non-categorical approach to chronic childhood illness. Public Health Reports, 97, 354-362.
55. Stein, R. E., & Jessop, D. (1990). Functional status II: A measure of child health status. Med Care, 28, 431-438.
56. Street, E., & Soldan, J. (1998). A conceptual framework for the psychosocial issues faced by families with genetic conditions. Fam Syst Health, 16, 217-232.
57. Thanarattanakorn, P., Louthrenoo, O., Sittipreechacharn, S., & Sanguansermsri, T. (2003). Family functioning in children with thalassemia. Clin Pediatr, 42(79-82).
58. Thompson, R., Armstrong, D., Link, C., Pegelow, C., Moser, F., & Wang, W. (2003). A prospective study of the relationship over time of behavior problems, intellectual functioning, and family functioning in children with sickle cell disease: A report from the Cooperative Study of Sickle Cell Disease. J Pediatr Psychol, 28, 59-65.
59. Thompson, R., Armstrong, F., Kronenberger, W., Scott, D., McCabe, M., Smith, B., et al. (1999). Family functioning, neurocognitive functioning, and behavior problems in children with sickle cell disease. J Pediatr Psychol, 24(6), 491-498.
60. Wallender, J., & Varni, J. (1998). Effects of pediatric chronic physical disorders on child and family adjustment. J Child Psychol Psychiatry, 39, 29-46.
61. Weil, J. (2003). Psychosocial genetic counseling in the post-nondirective era: A point of view. J Genet Counsel, 12(3), 199-211.
62. Wertz, D., Fanos, J., & Reilly, P. (1994). Genetic testing for children and adolescents: Who decides? J Am Med Assoc, 272, 875-881.