Sample
The sample was comprised of 142 parents (83 mothers; 53 fathers; 6 other family members) in 86 families in which a child had a single gene condition, namely, sickle cell disease, cystic fibrosis, phenylketonuria (PKU), neurofibromatosis, Marfan syndrome, hemophilia, von Willebrand disease, or thalassemia. Families were recruited into the study if the parents spoke English and the child had one of the aforementioned conditions, was 3-15 years of age, was biological for at least one parent, and was within two years of the appropriate grade in school. Respondents were either parents or primary caregivers of the child with the genetic condition. For simplicity, the term “parents” is used throughout this article to refer to both parents and primary caregivers. In families with two parents, both parents were invited to participate. No limitations were placed on the sample with regard to socioeconomic status, ethnicity, or race.