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Journal of Genetic Counseling

, Volume 16, Issue 4, pp 481–492 | Cite as

Parents’ Perceptions of Functioning in Families Having a Child with a Genetic Condition

  • Kathleen A. KnaflEmail author
  • George J. Knafl
  • Agatha M. Gallo
  • Denise Angst
Original Research

In a study of families having a child with a genetic condition, patterns of family functioning were identified through cluster analysis of families with two spouses. Patterns were based on both parents’ assessments of family satisfaction and hardiness, as measured respectively by the Family APGAR and Family Hardiness Index. The validity and clinical significance of the clusters were supported by demonstrating that cluster membership distinguished between parental reports of their own quality of life and their child’s functional status, as measured by the Quality of Life Index and the Functional Status II, respectively. The clusters were non-categorical in the sense that they did not depend on the type of genetic condition. These findings point to the importance of addressing family functioning as part of genetic counseling.

KEY WORDS

family research genetic condition in childhood cluster analysis 

Notes

ACKNOWLEDGMENTS

This work was supported in part by grant #R01HG/HD02036. The authors acknowledge Emily Hadley and Carrol Smith for their contributions to data collection and analysis, Dr. Suzanne Feetham for her ongoing consultation on this research and critical review of the manuscript, and Blair G. Darney for her editorial assistance. Thanks are extended to the parents who participated in this study.

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Copyright information

© Springer Science+Business Media, LLC 2007

Authors and Affiliations

  • Kathleen A. Knafl
    • 1
    • 4
    Email author
  • George J. Knafl
    • 1
  • Agatha M. Gallo
    • 2
  • Denise Angst
    • 3
  1. 1.Oregon Health & Science UniversitySchool of NursingPortlandUSA
  2. 2.University of Illinois at ChicagoCollege of NursingChicagoUSA
  3. 3.Advocate Health CareOak BrookUSA
  4. 4.Oregon Health & Science UniversitySchool of Nursing, PortlandPortlandUSA

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