Journal of Genetic Counseling

, Volume 20, Issue 2, pp 115–128 | Cite as

A Tailored Approach to Family-Centered Genetic Counseling for Cystic Fibrosis Newborn Screening: The Wisconsin Model

  • Audrey Tluczek
  • Christina Zaleski
  • Dania Stachiw-Hietpas
  • Peggy Modaff
  • Craig R. Adamski
  • Megan R. Nelson
  • Catherine A. Reiser
  • Sumedha Ghate
  • Kevin D. Josephson
Theory Based Paper

Abstract

This article describes the development of a tailored family-centered approach to genetic counseling following abnormal newborn screening (NBS) for cystic fibrosis (CF). A genetic counseling consortium reviewed research literature, selected theoretical frameworks, and incorporated counseling psychology micro skills. This innovative intervention integrated theories and empirically validated techniques. Pilot testing and parent feedback confirmed satisfaction with and feasibility of the approach designed to (a) minimize parents’ distress, (b) facilitate parents’ understanding, (c) increase parents’ capacities to use genetic information, and (d) enhance parents’ experiences with genetic counseling. Counselors engage in a highly interactive process of evaluating parents’ needs and tailoring assessments and interventions that include a therapeutic environment, the family’s emotional needs, parents’ informational needs, and a follow-up plan. This promising new model is the first to establish a theory-driven, evidence-based standard for genetic counseling in the context of NBS for CF. Additional research will evaluate the model’s efficacy in clinical practice.

Keywords

Cystic fibrosis CF carrier Genetic counseling Newborn screening Micro skill Tailored intervention 

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Copyright information

© National Society of Genetic Counselors, Inc. 2010

Authors and Affiliations

  • Audrey Tluczek
    • 1
  • Christina Zaleski
    • 2
  • Dania Stachiw-Hietpas
    • 3
  • Peggy Modaff
    • 4
  • Craig R. Adamski
    • 5
  • Megan R. Nelson
    • 6
  • Catherine A. Reiser
    • 7
  • Sumedha Ghate
    • 8
  • Kevin D. Josephson
    • 9
  1. 1.University of Wisconsin, School of NursingMadisonUSA
  2. 2.Marshfield ClinicMarshfieldUSA
  3. 3.Children’s Hospital of WisconsinMilwaukeeUSA
  4. 4.University of Wisconsin School of Medicine and Public HealthDepartment of PediatricsMadisonUSA
  5. 5.Michigan State UniversityEast LansingUSA
  6. 6.Aspirus Wausau HospitalWausauUSA
  7. 7.University of Wisconsin School of Medicine and Public HealthGenetic Counselor Training ProgramMadisonUSA
  8. 8.St. Vincent HospitalGreen BayUSA
  9. 9.Gundersen LutheranLaCrosseUSA

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