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

Publication Date


UMMS Affiliation

Graduate School of Nursing

Document Type



Health Services Administration | Health Services Research | Pediatric Nursing | Pediatrics


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.


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

DOI of Published Version



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.

Journal/Book/Conference Title

Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates and Practitioners


Jesica Pagano-Therrien undertook this study as a doctoral student (view her dissertation) in the Graduate School of Nursing at UMass Medical School.

Related Resources

Link to article in PubMed

PubMed ID