Strategic Planning for A Family-Centered Approach for Genetic Counseling

Audrey Tluczek, PhD, RN

This project aims to: 1) develop a manualized family-centered approach to genetic counseling; 2) determine the most appropriate instruments to evaluate this intervention; and 3) establish the validity and reliability of a single-item measure of parental worry. To accomplish these aims, the PI will collaborate with CF Center multidisciplinary clinicians to develop a manualized approach 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). A clinic staff member will recruit families at the beginning of families routine sweat test appointments. Parents will be informed that participation in this research is entirely voluntary; they may choose not to participate; if they decide to participate, they may change their minds at any time without penalty or loss of any benefits that they had prior to the study; and their decision about whether or not to participate in this study will not affect any relationships have with the University of Wisconsin. After parents’ questions have been answered, written consent will be obtained from each parent, and they will receive copies of the study consent and HIPAA forms. Participants will have their genetic counseling sessions videotaped and asked to complete questionnaires pre-counseling, immediately post counseling, and 2-4 weeks post counseling to measure their levels of emotional distress, CF knowledge, and satisfaction with counseling (post counseling only). We also propose conducting in-home qualitative interviews with optional reviews of the videotaped counseling session 2-4 weeks post counseling to document parents’ appraisal of the counseling process and their suggestions for improvement. The results of this project will provide preliminary data and a manualized protocol for a future study evaluating the effectiveness of the new method in comparison to the traditional counseling approach.