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dc.contributor.advisorCarol Bova
dc.contributor.authorPagano-Therrien, Jesica
dc.date2022-08-11T08:09:03.000
dc.date.accessioned2022-08-23T16:16:42Z
dc.date.available2022-08-23T16:16:42Z
dc.date.issued2016-04-11
dc.date.submitted2016-07-12
dc.identifier.doi10.13028/h9de-yk94
dc.identifier.urihttp://hdl.handle.net/20.500.14038/34391
dc.description<p>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.</p>
dc.description.abstractThe 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.
dc.language.isoen_US
dc.relation<p><a href="http://escholarship.umassmed.edu/gsn_pp/50/">Published article based on this dissertation</a></p>
dc.rightsCopyright is held by the author, with all rights reserved.
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/
dc.subjectChronic health conditions
dc.subjectdecision-making
dc.subjectinformed consent
dc.subjectpediatrics
dc.subjectresearch participation
dc.subjectAdolescent
dc.subjectChronic Disease
dc.subjectOutpatients
dc.subjectParents
dc.subjectQualitative Research
dc.subjectParental Consent
dc.subjectPatient Participation
dc.subjectBioethics and Medical Ethics
dc.subjectHealth Services Administration
dc.subjectHealth Services Research
dc.subjectPediatric Nursing
dc.subjectPediatrics
dc.titleResearch Participation Decision-Making Among Youth and Parents of Youth with Chronic Health Conditions: A Dissertation
dc.typeDoctoral Dissertation
dc.identifier.legacyfulltexthttps://escholarship.umassmed.edu/cgi/viewcontent.cgi?article=1053&amp;context=gsn_diss&amp;unstamped=1
dc.identifier.legacycoverpagehttps://escholarship.umassmed.edu/gsn_diss/44
dc.legacy.embargo2016-11-04T00:00:00-07:00
dc.identifier.contextkey8826963
refterms.dateFOA2022-08-24T04:12:41Z
html.description.abstract<p>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.</p>
dc.identifier.submissionpathgsn_diss/44
dc.contributor.departmentGraduate School of Nursing


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