title: Parents' perspectives on having their children interviewed for research.
abstract: We describe parents' perspectives on research interviews with their children with single gene conditions. One hundred forty-two parents were interviewed between 2002 and 2003 in a larger study using a qualitative descriptive design. Two questions from the semi-structured interview guide were used to identify parents' perspectives about future interviews. Almost all of the parents said they would allow an interview with their children, but some parents specified stipulations. These stipulations included: focusing on age-appropriate information, limiting information with child, considering input from parents, and providing a child-oriented environment. Knowing this information, researchers can prepare to work more collaboratively with parents and include them more fully in the research process.
authors.affiliation: University of Illinois at Chicago, Chicago, IL, USA.
authors.forename: Emily K
authors.initials: EK
authors.lastname: Hadley
authors.forename: Carrol A M
authors.initials: CA
authors.lastname: Smith
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
mesh_terms: D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D002641:Chicago; D002648:Child; D002651:Child Advocacy / Q000941:ethics / Q000523:psychology; D005260:Female; D030342:Genetic Diseases, Inborn / Q000523:psychology; D006805:Human Experimentation / Q000941:ethics; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D015404:Nursing Methodology Research; D033282:Parental Consent / Q000941:ethics / Q000523:psychology; D010290:Parents / Q000523:psychology*; D018579:Patient Selection / Q000941:ethics; D028662:Principle-Based Ethics; D011368:Professional-Family Relations / Q000941:ethics; D002666:Psychology, Child / Q000941:ethics; D036301:Qualitative Research; D035842:Research Subjects / Q000523:psychology; D035844:Researcher-Subject Relations / Q000941:ethics / Q000523:psychology; D011795:Surveys and Questionnaires