Affiliations: [a] School of Psychology, The University of Queensland, QLD, Australia | [b] UQ Centre for Clinical Research, The University of Queensland, QLD, Australia | [c] Centre for Research in Geriatric Medicine, The University of Queensland, QLD, Australia | [d] Dementia Collaborative Research Centre, Queensland University of Technology, QLD, Australia | [e] Department of Psychology, University of Southern California, Los Angeles, CA, USA | [f] Davis School of Gerontology, University of Southern California, Los Angeles, CA, USA
Correspondence:
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Correspondence to: Nancy A. Pachana, PhD, School of Psychology, The University of Queensland, Brisbane, QLD 4072, Australia. Tel.: +617 3365 6832; Fax: +617 3365 4466; E-mail: [email protected].
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.
