Research Participation Decision-Making Among Youth and Parents of Youth With Chronic Health Conditions

Jesica Pagano-Therrien, Susan Sullivan-Bolyai

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
Pages (from-to)167-177
Number of pages11
JournalJournal of Pediatric Health Care
Volume31
Issue number2
DOIs
StatePublished - Mar 1 2017

Keywords

  • Chronic health conditions
  • decision-making
  • informed consent
  • pediatrics
  • research participation

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health

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