Developing and Evaluating a Multimedia Technology Approach to Surveying Individuals with Cognitive Disabilities to Promote Person-Centred Practice

Abstract

Introduction The lack of accessible surveys available to obtain feedback and information about health directly from individuals with cognitive disabilities, or intellectual and/or developmental disabilities (IDD) themselves, and not by proxy from family members or guardians, is a major concern. Although literature describes guidelines and examples of accessible surveys, most commercial survey platforms do not provide an interface that is accessible to individuals with cognitive disabilities. There is little detailed research on the provision of a co-developed platform on which accessible surveys can be created in conjunction with stakeholders, including individuals with cognitive disabilities, with limited evidence of what accessibility has been achieved. Overall Methodology The design of the Westchester Institute for Human Development Easy Survey (WES) platform was based on the design cycle for the development of technology by Verschuren and Hartog (2005). The multimethodology study was completed in three phases. Phase 1 - Development of technology for a cognitively accessible survey software platform Methods Phase 1 of the study initialized the co-development process through consultation with experts who work with individuals with cognitive disabilities as well as individuals with cognitive disabilities themselves to identify features that would be needed to design a cognitively accessible survey platform. A case study was used to determine the perceptions of expert researchers/survey developers and end- users with IDD with emphasis on what was needed to develop a platform to make surveys accessible to individuals with IDD for self-report in a health services setting (Phase 1a and 1b). Phase 1c compiled and analyzed the information gathered from stakeholder interviews in Phases 1a and 1b into a comprehensive statement of requirements for the development of the accessible survey platform. Thereafter, Phase 1d considered the structural specifications for planning delivery of this platform and how it could be accessed/interacted with by individuals with cognitive Page | vii disabilities. In this stage of the study, the first version of WIHD EasySurvey was created. Lastly the evaluation of this built prototype was completed by expert researchers/survey developers and end-users, and pilot tested with individuals with IDD using an already-established patient satisfaction survey (Phase 1e). Results Two themes emerged in Phase 1 from expert researchers/survey developers – ensuring that the technical specifications of the survey platform software allow for accessible features, and adhering to accessibility requirements when developing a survey for individuals with cognitive disabilities. In Phase 1b, end-users with IDD identified their needs to be able to self-report through surveys to ensure accessibility of a survey platform; discussions with these individuals were analyzed to extract themes related to software, device, and population specific considerations. A statement of requirements document was developed in Phase1c from the themes found in Phases 1a and 1b, which was used to inform the first design concept in consultation with the software developer, after reviewing currently available survey platforms and evidence in literature for accessibility of online surveys. A software developer and graphic designer then created a draft user-interface design also during Phase 1c. Results in Phase 1d confirmed the need for survey delivery on various devices, and a prototype survey, which was shared with the participants from Phase 1a and 1b for review, was modified and reported to be accessible during a pilot test with individuals with IDD in Phase 1e. Discussion and conclusion The thematic analysis highlighted the need for the development of an online software platform with flexible and comprehensive front-end and back-end capabilities that a survey developer can utilize to create an accessible survey that individuals with cognitive disabilities can access and complete to ensure self-report. Both experts and end-users with IDD stressed understanding the varied abilities of end-user and device compatibility. The feedback from experts and end-users with IDD in conjunction with an analysis of industry standard survey platform features and available literature confirmed survey platform requirements for subsequent study phases. Insights from this phase informed the principal investigator (PI) in developing the new technology platform. Page | viii Phase 2 - Implementation and testing of the multimedia technology in a survey format Methods Phase 2 addressed the implementation step in the designing cycle by recreating an existing Self-Advocacy Survey on the WIHD EasySurvey prototype platform. The prototype survey was transferred to a real-life context in a 10-question abbreviated WIHD self-advocacy survey (SAS), created on WIHD EasySurvey (WES), used for self-report by individuals with cognitive disabilities (Phase 2a). A group consensus research design was used with occupational therapy students who had a unique background in activity analysis and disability knowledge to select multimedia images for each question (Phase 2b). These images were evaluated by expert researchers/survey developers and end-users for content validity (Phase 2c). Results The 10 questions chosen for the WES abbreviated WIHD SAS were set at a readability level of 3rd - 5th Grade in valid assessments adapted for adults. Sound and video multimedia were activated in the survey and at least two images, with 80% consensus agreed upon by co-investigating occupational therapy students, were selected for each question to improve accessibility. The content validity ratio (CVR) and item content validity index (CVI) score based on input from developers/researchers and end-users were both above 0.85 indicating content validity for the multimedia images in the survey. Summative content analysis indicated the most common reason for approval of the multimedia added to the survey was the clear link between the image/question which helped to clarify the question. Discussion and conclusion Implementation of readable questions with sound and video links were supported by validated multimedia images in creating a survey for those with mild and moderate IDD to provide self-report options.