Parents' Experiences and Needs Regarding Infant Sickle Cell Trait Results.

ABSTRACT:

Background and objective

Sickle cell trait (SCT) has reproductive implications and can rarely cause health problems. SCT counseling improves parent knowledge but is infrequently received by children with SCT compared with children with cystic fibrosis carrier status. There are no national guidelines on SCT disclosure timing, frequency, or counseling content. Parents' experiences with SCT disclosure and counseling are poorly understood but could inform the development of guidelines. We explored parents' experiences with and desires for SCT disclosure and counseling for their infants with SCT identified via newborn screening.

Methods

Parents of infants 2 to 12 months old with SCT were recruited through a state newborn screening program for semistructured interviews to explore

SUBMITTER: Sims AM 

PROVIDER: S-EPMC9647577 | biostudies-literature | 2022 May

REPOSITORIES: biostudies-literature