This exploratory pilot project aims to evaluate the feasibility and initial efficacy of an innovative family-centered approach to genetic counseling that combines patient- centered principles and mental health techniques to address the cognitive and emotional needs of parents whose infants have abnormal DNA analyses from newborn screens (NBS) for cystic fibrosis (CF). To accomplish these aims, we plan to evaluate our ability to recruit and retain sufficient numbers of study participants to conduct a randomized clinical trial (RCT) in the future and compare the family-centered counseling approach with the traditional counseling approach with regards to the following parent self-reported measures: a) levels of emotional distress pre/post-counseling;b) knowledge about the screening and sweat test results, genetics of CF, and reproductive implications of being a CF carrier, all measured pre/post-counseling;and c) satisfaction with the counseling process measured post-counseling. The R21 funds will facilitate a seamless transition from the P20-funded development of this family-centered approach to the proposed study which will examine the approach's feasibility and initial efficacy. Findings from this study will provide preliminary data for a future RCT.Narrative This exploratory pilot project aims to evaluate the feasibility and initial efficacy of an innovative family-centered approach to genetic counseling that combines patient-centered principles and mental health techniques to address the cognitive and emotional needs of parents whose infants have abnormal DNA analyses from newborn screens (NBS) for cystic fibrosis (CF). Findings from this study will provide preliminary data for a future randomized clinical trial (RCT).
| Tluczek, Audrey; Zaleski, Christina; Stachiw-Hietpas, Dania et al. (2011) A tailored approach to family-centered genetic counseling for cystic fibrosis newborn screening: the Wisconsin model. J Genet Couns 20:115-28 |
| Cavanagh, Laura; Compton, Cecilia J; Tluczek, Audrey et al. (2010) Long-term evaluation of genetic counseling following false-positive newborn screen for cystic fibrosis. J Genet Couns 19:199-210 |
