Empowering Neurodiverse Voices in Research Ethics through a Playful Card-Based Approach

Abstract

Whenever carrying out research, all participants must know their rights, especially when those participants are perceived as being part of a vulnerable group; however, discussing ethics in investigation can be difficult. To solve this challenge, a playful approach was taken, as playfulness can make dull tasks – especially those that can cause discomfort and difficulties – more entertaining and help people approach them with an open mind. This study reports on four empirical approaches that used a playful process to raise awareness about ethical concerns when doing research with neurodiverse people. For this activity, 39 cards describing and illustrating several relevant and evidence-based ethical principles were created. Then, three case studies were developed, each based on a different focus group composed of ten neurodivergent self-advocates and one with professors and students from Brazil. Each neurodivergent group was also accompanied by three support workers from the partner associations (two of the groups were accompanied by the same individuals). In total, 56 participants engaged in a playful activity that consisted of a game of ‘broken telephone’ where the title of a card (representing an ethical principle) is read to one of the players who then has to whisper it to the next person in line, repeating this process until reaching the last person. The last person then says what they heard out loud, with the original message being revealed for contrast. The title of the cards was discussed by the groups to understand if it was clear and understandable or difficult and confusing. Although not all the cards were validated through the activity, 14 were flagged by neurodivergent people as "needing changes". The feedback was recorded and is presented here. This study set out to validate a set of cards in easy-to-read language that could introduce ethical concepts to participants in research projects through a playful activity. Future study will see the cards iterated upon through the feedback gathered along with the creation of a small guide on how they may be used in playful activities.