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For the sake of informed participation: Development of two audio‐visual aids for informed consent to a dementia prevalence study through participatory action research
Author(s) -
Fadda Marta,
Fiordelli Maddalena,
Ibnidris Aliaa,
Albanese Emiliano
Publication year - 2020
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1002/alz.043591
Subject(s) - informed consent , focus group , participatory action research , autonomy , jargon , psychology , readability , medical education , applied psychology , family medicine , medicine , computer science , alternative medicine , sociology , pathology , anthropology , political science , law , linguistics , philosophy , programming language
Background The limits of traditional informed consent are well known. Its goal should be to support individual autonomy and provide assurance that potential research participants are neither deceived nor coerced. For these reasons, they should be designed to give potential research participants control over the amount of information they receive and the opportunity to rescind consent already given. However, most informed consent forms are excessively long and use a technical jargon that is hard to understand for lay people. As part of an epidemiological study on dementia and its impact, we set out to develop two visual aids for informed consent (a video and a printed infographic) through participatory action research. Method We conducted four focus groups with people aged 65 or older and resident in the Italian‐speaking Canton of Switzerland (N=30). Participants were shown a preliminary version of the visual aids and were asked to provide feedback on information quality and appeal (speed, duration, color, font etc.). Focus groups were tape‐recorded, transcribed and analyzed to inform refinement of the visual aids before each subsequent focus group. Result The two visual aids complied with good clinical practice (GCP) guidelines of informed consent. We adapted the videos to the participants’ demand for lower speed and longer duration. We re‐arranged information according to a question‐and‐answer format displayed within the same graphical sequence. Information deemed too complex by participants was simplified using an advanced readability assessment tool (READ–IT), which combines traditional raw text features with lexical, morpho‐syntactic and syntactic information. Conclusion Participatory action research is crucial for the development of tailored tools to support informed consent in epidemiological research. Further research is warranted to test if compared to traditional informed consents, the use of audio‐visual aids developed with potential participants to epidemiological research promotes research participation, and in a better informed fashion.