Use of visual aids for improving communication between researchers and research participants living with dementia

Abstract

AbstractBackgroundResearch shows that pictures enhance the comprehensibility of written information. To ensure vulnerable groups are protected, ethical conduct of research requires collection of informed consent, ensuring research participants have a clear understanding of the research topic. For complex research, consent forms and participant information sheets can be lengthy, text‐heavy, and difficult to interpret, creating comprehension difficulties. For people living with dementia and associated cognitive impairment, such difficulties are magnified. The purpose of our study was to assess the preferences of people with dementia for written or pictorial information when providing informed consent.MethodA consent process was undertaken as part of a broader research design involving people living with dementia and their care‐partners in focus groups and online interviews. Consent was obtained at the beginning of each session, providing a choice between written and pictorial research information, i.e., consent form and participant information sheet. Text‐based research information was summarized into short sentences. Simplistic illustrations were created based on those sentences which acted as descriptions of the visuals (see Image 1 and Image 2). Both text and picture‐based versions were shared with research participants when first recruited for completion and collection at the focus group or interview. Preference was ascertained by noting the choice of format.Focus groups were conducted in person in Wynnum Library, Brisbane and interviews were conducted online.ResultThree people living with dementia and three care‐partners participated in focus groups. Four people living with dementia and two care‐partners participated in online interviews.All people living with dementia demonstrated a preference for the picture‐based versions, while care‐partners had mixed responses. All participants felt that the multimodal approach was considerate of the needs of people living with dementia.ConclusionOur findings suggest the majority of people living with dementia would prefer research information documents in a multimodal format, although the finding is not generalizable due to a small sample size. Whether this preference is due to its visual appeal or its ability to simplify the information is unclear and warrants further investigation. Larger studies may improve generalizability to broader populations.