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Can We Do Better? Researchers' Experiences with Ethical Review Boards on Projects with Later Life as a Focus

Overview of attention for article published in Journal of Alzheimer's Disease, January 2015
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Title
Can We Do Better? Researchers' Experiences with Ethical Review Boards on Projects with Later Life as a Focus
Published in
Journal of Alzheimer's Disease, January 2015
DOI 10.3233/jad-141956
Pubmed ID
Authors

Nancy A Pachana, Jacki Liddle, Nancye M Peel, Elizabeth Beattie, Christine Juang, Bob G Knight

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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X Demographics

The data shown below were collected from the profiles of 4 X users who shared this research output. Click here to find out more about how the information was compiled.
Mendeley readers

Mendeley readers

The data shown below were compiled from readership statistics for 49 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 49 100%

Demographic breakdown

Readers by professional status Count As %
Researcher 7 14%
Student > Ph. D. Student 6 12%
Student > Master 5 10%
Student > Bachelor 5 10%
Other 4 8%
Other 10 20%
Unknown 12 24%
Readers by discipline Count As %
Social Sciences 12 24%
Psychology 11 22%
Medicine and Dentistry 7 14%
Neuroscience 2 4%
Nursing and Health Professions 1 2%
Other 2 4%
Unknown 14 29%
Attention Score in Context

Attention Score in Context

This research output has an Altmetric Attention Score of 3. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 26 July 2018.
All research outputs
#14,787,133
of 25,382,440 outputs
Outputs from Journal of Alzheimer's Disease
#6,371
of 7,452 outputs
Outputs of similar age
#180,325
of 359,549 outputs
Outputs of similar age from Journal of Alzheimer's Disease
#343
of 449 outputs
Altmetric has tracked 25,382,440 research outputs across all sources so far. This one is in the 41st percentile – i.e., 41% of other outputs scored the same or lower than it.
So far Altmetric has tracked 7,452 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 21.2. This one is in the 14th percentile – i.e., 14% of its peers scored the same or lower than it.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 359,549 tracked outputs that were published within six weeks on either side of this one in any source. This one is in the 49th percentile – i.e., 49% of its contemporaries scored the same or lower than it.
We're also able to compare this research output to 449 others from the same source and published within six weeks on either side of this one. This one is in the 23rd percentile – i.e., 23% of its contemporaries scored the same or lower than it.