Can we do better? Researchers' experiences with ethical review boards on projects with later life as a focus

Pachana, Nancy A., Liddle, Jacki, Peel, Nancye M., Beattie, Elizabeth, Juang, Christine and Knight, Bob G. (2014) Can we do better? Researchers' experiences with ethical review boards on projects with later life as a focus. Journal of Alzheimer's Disease, 43 3: 701-707. doi:10.3233/JAD-141956

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Author Pachana, Nancy A.
Liddle, Jacki
Peel, Nancye M.
Beattie, Elizabeth
Juang, Christine
Knight, Bob G.
Title Can we do better? Researchers' experiences with ethical review boards on projects with later life as a focus
Journal name Journal of Alzheimer's Disease   Check publisher's open access policy
ISSN 1875-8908
1387-2877
Publication date 2014-11-30
Year available 2012
Sub-type Article (original research)
DOI 10.3233/JAD-141956
Open Access Status Not Open Access
Volume 43
Issue 3
Start page 701
End page 707
Total pages 7
Place of publication Amsterdam, Netherlands
Publisher IOS Press
Language eng
Abstract The goal of this study was to describe researchers' experiences in submitting ethical proposals focused on older adult populations, including studies with persons with dementia, to ethical review boards. Ethical approval was granted for an online survey. Researchers were recruited via listservs and snowballing techniques. Participants included 157 persons (73% female) from Australia and the United States, with a mean age of 46 (±13). Six main issues were encountered by researchers who participated in this survey. In descending order, these included questions regarding: informed consent and information requirements (61.1%), participants' vulnerability, particularly for those with cognitive impairments (58.6%), participant burden (44.6%), data access (29.3%), adverse effects of data collection/intervention (26.8%), and study methodology (25.5%). An inductive content analysis of responses revealed a range of encounters with ethical review panels spanning positive, negative, and neutral experiences. Concerns voiced about ethical review boards included committees being overly focused on legal risk, as well as not always hearing the voice of older research participants, both potential and actual. Respondents noted inability to move forward on studies, as well as loss of researchers and participant groups from gerontological and clinical research as a result of negative interactions with ethics committees. Positive interactions with the committees reinforced researchers' need to carefully construct their research approaches with persons with dementia in particular. Suggested guidelines for committees when dealing with ethics applications involving older adults include self-reflecting on potential biases and stereotypes, and seeking further clarification and information from gerontological researchers before arriving at decisions.
Keyword Aging
Ethics committees
Frail older adults
Healthcare research
Research ethics
Q-Index Code C1
Q-Index Status Confirmed Code
Institutional Status UQ
Additional Notes Online Date Wednesday, November 05, 2014

 
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