title: Is my sick child healthy? Is my healthy child sick?: changing parental experiences of cystic fibrosis in the age of expanded newborn screening.
abstract: This paper explores how rapid growth in the USA of mandatory newborn screening (NBS) leading to a diagnosis of cystic fibrosis is changing, for affected families, their experience of illness versus disease. Qualitative research comparing newborn screening and post-symptomatic diagnostic experiences suggests a number of potent consequences associated with affixing a disease diagnosis through newborn screening. The early, unsought diagnosis deeply affects parents' feeling of competence to care for their newborn and their sense of who the child is, and places the disease -- rather than the process of "falling in love with" the new baby -- at centre stage during the child's early weeks and months; and causes health professionals to loom very large in the family's life at this formative time. With newborn genetic screening continuing to expand rapidly in the USA for a range of other conditions that may not be immediately symptomatic, we can expect that the newborn period will be significantly altered in these ways for a growing segment of the population.
authors.affiliation: Sarah Lawrence College, Bronxville, NY, USA. rgrob@slc.edu
authors.forename: Rachel
authors.initials: R
authors.lastname: Grob
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D001294:Attitude to Health; D002675:Child, Preschool; D003550:Cystic Fibrosis / Q000175:diagnosis*; D019988:Children with Disabilities; D005260:Female; D005820:Genetic Testing; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007407:Interviews as Topic; D008297:Male; D008403:Mass Screening / Q000009:adverse effects / Q000523:psychology*; D008875:Middle Aged; D016487:Parenting; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000009:adverse effects / Q000523:psychology*; D011368:Professional-Family Relations; D014481:United States; D055815:Young Adult