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Oral and written information about newborn screening should be concise and given to parents by primary prenatal care providers

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Q How knowledgeable are parents of newborns and their healthcare providers about newborn screening? What are their impressions, as well as those of newborn screening professionals, about the content and timing of newborn screening education?

DESIGN

Qualitative study.

SETTING

Several states in the US.

PARTICIPANTS

Purposeful sample of 51 parents (16–39 y, 94% women) of infants <1 year of age who had experience with newborn screening; 78 healthcare professionals (23–72 y, 55% women) who provided prenatal or newborn care (24 family physicians, 17 paediatricians, 11 obstetricians, 11 labour and delivery nurses, and 15 other professionals); and 9 state newborn screening professionals (35–60 y, 67% women) (4 nurses, 3 physicians, 1 social worker, and 1 laboratory supervisor).

METHODS

22 focus groups were conducted, each lasting about 1 hour, with 2–12 individuals per group. Most focus groups were conducted in person and audiotaped. 1 focus group and 3 individual interviews were conducted by telephone. Group moderators used scripted questions developed specifically for each type of participant. The …

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