Parental Attitudes and Ideas Regarding Newborn Screening for Familial Hypercholesterolemia.

Background: Familial hypercholesterolemia (FH) is an inherited disease which causes premature atherosclerotic cardiovascular disease. However, less than 10% of individuals with FH have been identified.

Objective: To assess parental perspectives for inclusion of FH on routine newborn screening (NBS) and to highlight potential benefits, harms, and ethical concerns.

Psychosocial consequences of false-positive newborn screens for cystic fibrosis.

This study was designed to develop a framework for understanding parents' perspectives about the psychosocial consequences of false-positive newborn screening (NBS) results for cystic fibrosis (CF). Through content analysis of interviews with 87 parents of 44 infants, we found that receipt of genetic information through NBS affected parents on intrapersonal and interpersonal levels within a relational family system. Repercussions included wondering about test accuracy, the child's health, and the future; gaining new perspectives and strengthening relationships; questioning paternity; wondering if other relatives had CF/were carriers; searching for the genetic source; sharing genetic information; supporting NBS; and feeling empathy for parents of affected children.

Task-oriented and bottle feeding adversely affect the quality of mother-infant interactions after abnormal newborn screens.

Objective: To examine effects of newborn screening and neonatal diagnosis on the quality of mother-infant interactions in the context of feeding.

Methods: Study compared the quality of mother-infant feeding interactions among 4 groups of infants classified by severity of newborn screening and diagnostic results: cystic fibrosis (CF), congenital hypothyroidism, heterozygote CF carrier, and healthy with normal newborn screening. The Parent-Child Early Relational Assessment and a task-oriented item measured the quality of feeding interactions for 130 dyads, infant ages 3 to 19 weeks (M = 9.

Newborn screening: an appeal for improved parent education.

Objective: The purpose of this study, which was part of a larger investigation of newborn screening (NBS) for cystic fibrosis (CF), was to learn how parents were informed about NBS and obtain their suggestions for improving the process of educating parents about NBS.

Method: Qualitative study using directed and summative content analyses was conducted on 100 interviews with 193 parents of 100 newborns recruited from 4 clinical populations including parents of infants with (1) a CF diagnosis, (2) one CF mutation and therefore CF carriers, (3) congenital hypothyroidism, and (4) normal screening results.

Results: Parents described much inconsistency in the timing of and methods used to inform them about NBS.