title: Health care professionals' views of sharing information with families who have a child with a genetic condition.
abstract: The purpose of this study was to examine health care professionals' views and strategies for individualizing information sharing in families who have a child with a genetic condition. The sample consisted of 37 health professionals from three clinical sites in the greater metropolitan area of a large Midwestern city. Qualitative content thematic analysis was used to analyze data from the health professionals' semi-structured interviews. Four themes captured how health care professionals work with families around information management: Sharing Information with Parents, Taking into Account Parental Preferences, Understanding of the Condition, and Helping Parents Inform Others. These findings contribute to understanding the processes that health professionals use in sharing information with parents who have children with a genetic condition, and they provide guidance for clinical practice, professional training, and future research.
authors.affiliation: University of Illinois at Chicago, College of Nursing (M/C 802), Women, Children and Family Health Science, 845 South Damen Avenue, Chicago, IL 60612, USA. agallo@uic.edu
authors.forename: Agatha M
authors.initials: AM
authors.lastname: Gallo
authors.forename: Denise B
authors.initials: DB
authors.lastname: Angst
authors.forename: Kathleen A
authors.initials: KA
authors.lastname: Knafl
authors.forename: John G
authors.initials: JG
authors.lastname: Twomey
authors.forename: Emily
authors.initials: E
authors.lastname: Hadley
mesh_terms: D001291:Attitude of Health Personnel; D017028:Caregivers / Q000523:psychology*; D002648:Child; D003142:Communication; D032882:Comprehension; D003657:Decision Making; D005260:Female; D005817:Genetic Counseling / Q000523:psychology; D030342:Genetic Diseases, Inborn / Q000175:diagnosis / Q000235:genetics* / Q000523:psychology; D020022:Genetic Predisposition to Disease / Q000235:genetics / Q000523:psychology*; D006266:Health Education; D006801:Humans; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000193:education / Q000523:psychology; D011368:Professional-Family Relations; D035502:Trust; D014342:Truth Disclosure