title: Research Participation Decision-Making Among Youth and Parents of Youth With Chronic Health Conditions.
abstract: The aims of this qualitative descriptive study were to describe how past experiences with research (including communication, information, values, and support) may contribute to research fatigue among youth and parents of youth with HIV, cystic fibrosis, and Type 1 diabetes. Eighteen parents and youth were purposively recruited from outpatient subspecialty clinics at a major academic medical center. They took part in qualitative interviews and completed a demographics form and the Decisional Conflict Scale. Youth participants also completed the Erikson Psychosocial Stage Inventory. Two major themes emerged: Blurred Lines and Hope for the Future. Research fatigue was not found in this sample. Results point to challenges with informed consent in settings where research and clinical care are integrated and suggest that protective factors allow for continued participation without excess burden on youth and parents. Strategies to minimize research fatigue and support engagement in research are offered.
authors.forename: Jesica
authors.initials: J
authors.lastname: Pagano-Therrien
authors.forename: Susan
authors.initials: S
authors.lastname: Sullivan-Bolyai
mesh_terms: D000293:Adolescent; D035843:Biomedical Research / Q000941:ethics; D002908:Chronic Disease; D003142:Communication; D003657:Decision Making / Q000941:ethics*; D005260:Female; D006801:Humans; D007258:Informed Consent / Q000941:ethics; D008297:Male; D010290:Parents / Q000523:psychology*; D026684:Personal Autonomy; D036301:Qualitative Research; D035842:Research Subjects / Q000523:psychology*; D055815:Young Adult
keywords: Chronic health conditions; decision-making; informed consent; pediatrics; research participation