Graduate School of Nursing Dissertations

Publication Date


Document Type

Dissertation, Doctoral


Graduate School of Nursing

Dissertation Committee Chair

Carol Bova


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

Subject Categories

Bioethics and Medical Ethics | Health Services Administration | Health Services Research | Pediatric Nursing | Pediatrics


Dissertations, UMMS; Adolescent; Chronic Disease; Informed Consent; Outpatients; Parents; Qualitative Research; Parental Consent; Patient Participation


The purpose and 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, CF, and T1D. Eighteen parents and youth were purposively recruited from outpatient subspecialty clinics at a major academic medical center. They took part in qualitative interviews, 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.


Material from this dissertation has been published in: Pagano-Therrien J, Sullivan-Bolyai S. Research Participation Decision-Making Among Youth and Parents of Youth With Chronic Health Conditions. J Pediatr Health Care. 2016 Aug 20. pii: S0891-5245(16)30157-2. doi: 10.1016/j.pedhc.2016.07.002. PubMed PMID: 27553117.

Rights and Permissions

Copyright is held by the author, with all rights reserved.



To view the content in your browser, please download Adobe Reader or, alternately,
you may Download the file to your hard drive.

NOTE: The latest versions of Adobe Reader do not support viewing PDF files within Firefox on Mac OS and if you are using a modern (Intel) Mac, there is no official plugin for viewing PDF files within the browser window.