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

Authors
  • Pagano-Therrien, Jesica
  • Sullivan-Bolyai, Susan
Type
Published Article
Journal
Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners
Publication Date
2017
Volume
31
Issue
2
Pages
167–177
Identifiers
DOI: 10.1016/j.pedhc.2016.07.002
PMID: 27553117
Source
Medline
Keywords
License
Unknown

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.

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