Research Participation Decision-Making Among Youth and Parents of Youth with Chronic Health Conditions: A Dissertation
Authors
Pagano-Therrien, JesicaFaculty Advisor
Carol BovaUMass Chan Affiliations
Graduate School of NursingDocument Type
Doctoral DissertationPublication Date
2016-04-11Keywords
Chronic health conditionsdecision-making
informed consent
pediatrics
research participation
Adolescent
Chronic Disease
Outpatients
Parents
Qualitative Research
Parental Consent
Patient Participation
Bioethics and Medical Ethics
Health Services Administration
Health Services Research
Pediatric Nursing
Pediatrics
Metadata
Show full item recordAbstract
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.DOI
10.13028/h9de-yk94Permanent Link to this Item
http://hdl.handle.net/20.500.14038/34391Notes
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.
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Copyright is held by the author, with all rights reserved.Distribution License
http://creativecommons.org/licenses/by/4.0/ae974a485f413a2113503eed53cd6c53
10.13028/h9de-yk94
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