Parents' Experiences and Needs Regarding Infant Sickle Cell Trait Results

Authors

Alexandra M. Sims, Division of General and Community Pediatrics, Children's National Hospital, Washington, District of Columbia.
Shamaree J. Cromartie, Virginia Department of Health, Richmond, Virginia.
Lelia Gessner, Division of General and Community Pediatrics, Children's National Hospital, Washington, District of Columbia.
Andrew Campbell, Department of Pediatrics, The George Washington University School of Medicine, Washington, District of Columbia.
Tumaini Coker, Seattle Children's Hospital, Seattle, Washington.
C Jason Wang, Departments of Pediatrics and Medicine, Stanford University School of Medicine, Stanford, California.
Beth A. Tarini, Division of General and Community Pediatrics, Children's National Hospital, Washington, District of Columbia.

Document Type

Journal Article

Publication Date

5-1-2022

Journal

Pediatrics

Volume

149

Issue

5

DOI

10.1542/peds.2021-053454

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 their experiences with and desires for SCT disclosure and counseling. Inductive thematic analysis was conducted. RESULTS: Sixteen interviews were completed from January to August 2020. Most parents reported that SCT disclosure occurred soon after birth, in person, and by the child's physician. Five themes were identified: parent knowledge before child's SCT disclosure, family planning, the dynamics of SCT disclosure and counseling, emotions and actions after SCT disclosure, and parent desires for the SCT disclosure and counseling process. Two primary parent desires were revealed. Parents want more information about SCT, particularly rare symptomatology, and they want SCT counseling repeated once the child approaches adolescence. CONCLUSION: Parents report receiving their child's SCT diagnosis in the early newborn period from their child's doctor but indicate they receive incomplete information. Opportunities exist in primary care pediatrics to better align SCT disclosure timing and counseling content with parent desires.

APA Citation

Sims, Alexandra M.; Cromartie, Shamaree J.; Gessner, Lelia; Campbell, Andrew; Coker, Tumaini; Wang, C Jason; and Tarini, Beth A., "Parents' Experiences and Needs Regarding Infant Sickle Cell Trait Results" (2022). GW Authored Works. Paper 1043.
https://hsrc.himmelfarb.gwu.edu/gwhpubs/1043

Department

Pediatrics