Graduate School of Nursing
Dissertation Committee Chair
Chronic health conditions, decision-making, informed consent, pediatrics, research participation
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.
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Pagano-Therrien, J. Research Participation Decision-Making Among Youth and Parents of Youth with Chronic Health Conditions: A Dissertation. (2016). University of Massachusetts Medical School. Graduate School of Nursing Dissertations. Paper 44. https://escholarship.umassmed.edu/gsn_diss/44