Measures
Interview guide
Based on the FMSF and a review of literature on information management, a 37-item semi-structured interview guide was developed that focused on how parents accessed, interpreted, and conveyed information relating to their child's genetic condition. The guide included both open-ended questions and specific probes. To assess the content validity of the interview guide, two consultants who were familiar with the FMSF, had research background in genetics and families, and an understanding of information management, evaluated the individual questions and the entire guide for relevance and appropriateness. See Table 1 for example interview questions by information management aspects: accessing, interpreting and conveying information.