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

Pachana, Nancy A. and Liddle, Jacki and Peel, Nancye M. and Beattie, Elizabeth and Juang, Christine and Knight, Bob G. (2015) 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). pp. 701-707. ISSN 1387-2877

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.


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Item Type: Article (Commonwealth Reporting Category C)
Refereed: Yes
Item Status: Live Archive
Additional Information: Permanent restricted access to published version in accordance with the copyright policy of the publisher.
Faculty / Department / School: Current - Faculty of Health, Engineering and Sciences - School of Psychology and Counselling
Date Deposited: 22 Apr 2016 04:44
Last Modified: 28 Jul 2016 02:56
Uncontrolled Keywords: aging, ethics committees, frail older adults, healthcare research, research ethics
Fields of Research : 11 Medical and Health Sciences > 1103 Clinical Sciences > 110308 Geriatrics and Gerontology
Socio-Economic Objective: C Society > 92 Health > 9205 Specific Population Health (excl. Indigenous Health) > 920502 Health Related to Ageing
Identification Number or DOI: 10.3233/JAD-141956
URI: http://eprints.usq.edu.au/id/eprint/28203

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