دورية أكاديمية
Informed Consent in Two Alzheimer's Disease Research Centers: Insights From Research Coordinators.
| العنوان: | Informed Consent in Two Alzheimer's Disease Research Centers: Insights From Research Coordinators. |
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| المؤلفون: | Suver CM; Sage Bionetworks, Seattle, WA, USA., Hamann JK; Sage Bionetworks, Seattle, WA, USA., Chin EM; University of Wisconsin-Madison Alzheimer's Disease Research Center, Madison, WI, USA., Goldstein FC; Emory University Goizueta Alzheimer's Disease Research Center, Atlanta, GA, USA., Blazel HM; University of Wisconsin-Madison Alzheimer's Disease Research Center, Madison, WI, USA., Manzanares CM; Emory University Goizueta Alzheimer's Disease Research Center, Atlanta, GA, USA., Doerr MJ; Sage Bionetworks, Seattle, WA, USA., Asthana SJ; University of Wisconsin-Madison Alzheimer's Disease Research Center, Madison, WI, USA., Mangravite LM; Sage Bionetworks, Seattle, WA, USA., Levey AI; Emory University Goizueta Alzheimer's Disease Research Center, Atlanta, GA, USA., Lah JJ; Emory University Goizueta Alzheimer's Disease Research Center, Atlanta, GA, USA., Edwards DF; University of Wisconsin-Madison Alzheimer's Disease Research Center, Madison, WI, USA. |
| المصدر: | AJOB empirical bioethics [AJOB Empir Bioeth] 2020 Apr-Jun; Vol. 11 (2), pp. 114-124. Date of Electronic Publication: 2020 Mar 16. |
| نوع المنشور: | Journal Article; Research Support, N.I.H., Extramural |
| اللغة: | English |
| بيانات الدورية: | Publisher: Taylor & Francis Group, 2014- Country of Publication: United States NLM ID: 101631047 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 2329-4523 (Electronic) Linking ISSN: 23294515 NLM ISO Abbreviation: AJOB Empir Bioeth Subsets: MEDLINE |
| أسماء مطبوعة: | Original Publication: Philadelphia, PA : Taylor & Francis Group, 2014- |
| مواضيع طبية MeSH: | Alzheimer Disease*/psychology , Communication* , Professional-Patient Relations* , Research Personnel* , Research Subjects*, Biomedical Research/*ethics , Informed Consent/*ethics, Adult ; Attention ; Comprehension ; Consent Forms ; Ethics, Research ; Female ; Humans ; Male ; Qualitative Research ; Surveys and Questionnaires ; Therapeutic Misconception |
| مستخلص: | Background : Informed consent (IC) is critical to performing ethical research. Unfortunately, the IC process and supporting IC forms are frequently burdensome and do not necessarily meet the informational needs of participants. The intersecting legal and ethical challenges of obtaining IC from individuals with memory or cognitive deficits further exacerbate existing IC shortcomings. For this reason, study coordinators play a critical role in facilitating the IC process in Alzheimer's disease (AD) research. To identify opportunities to improve how IC is obtained in AD research, we examined the IC process from the perspectives of study coordinators at two Alzheimer's Disease Research Centers (ADRC). Methods : We performed semi-structured interviews with 15 study coordinators from two ADRC sites detailing their experience obtaining IC. Interviews were conducted in private, recorded, transcribed, and independently coded using the constant comparative method of grounded theory. Key themes were explored as they emerged. Results : Coordinators reported overall satisfaction with the IC process. However, many reported difficulties maintaining participant attention, explaining complex procedures, and addressing medical misinformation. Although the centers use site-specific consent forms, coordinators at both centers stressed that their IC is too long and the supporting IC forms are too complicated. Coordinators indicated modifying the IC process to the perceived needs of individual participants. Adaptations reported include altering the cadence and vocabulary they employ, using supplemental materials, varying the order of IC topics, and limiting the depth of information presented. Conclusion : A qualitative analysis of interviews with study coordinators reveals opportunities to improve how we obtain IC in AD research. These insights will be used to create an electronic informed consent (eConsent) designed to boost engagement, enhance trust, and improve understanding by supporting participants' direct agency in the IC process. |
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| معلومات مُعتمدة: | P30 AG062715 United States AG NIA NIH HHS; P50 AG025688 United States AG NIA NIH HHS; P50 AG033514 United States AG NIA NIH HHS |
| فهرسة مساهمة: | Keywords: Informed consent; memory deficit; qualitative research; study coordinator |
| تواريخ الأحداث: | Date Created: 20200317 Date Completed: 20210701 Latest Revision: 20210701 |
| رمز التحديث: | 20240829 |
| مُعرف محوري في PubMed: | PMC7266429 |
| DOI: | 10.1080/23294515.2020.1737982 |
| PMID: | 32175821 |
| قاعدة البيانات: | MEDLINE |
PDF full text from Publisher | تدمد: | 2329-4523 |
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| DOI: | 10.1080/23294515.2020.1737982 |