A tailored approach to family-centered genetic counseling for cystic fibrosis newborn screening: the Wisconsin model.
J Genet Couns
; 20(2): 115-28, 2011 Apr.
Article
em En
| MEDLINE
| ID: mdl-20936425
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.
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Pais
/
Triagem Neonatal
/
Fibrose Cística
/
Aconselhamento Genético
/
Modelos Teóricos
País/Região como assunto:
America do norte
Idioma:
En
Ano de publicação:
2011
Tipo de documento:
Article
País de afiliação:
Estados Unidos