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Research Participation Decision-Making Among Youth and Parents of Youth with Chronic Health Conditions: A Dissertation

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.

Identiferoai:union.ndltd.org:umassmed.edu/oai:escholarship.umassmed.edu:gsn_diss-1053
Date11 April 2016
CreatorsPagano-Therrien, Jesica
PublishereScholarship@UMMS
Source SetsUniversity of Massachusetts Medical School
Detected LanguageEnglish
Typetext
Formatapplication/pdf
SourceGraduate School of Nursing Dissertations
RightsCopyright is held by the author, with all rights reserved., http://creativecommons.org/licenses/by/4.0/
Relation<p><a href="http://escholarship.umassmed.edu/gsn_pp/50/">Published article based on this dissertation</a></p>

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