Magee, Paul

Moody, Louise

Roebuck, Annette

Ward, Gillian

Coventry University Pure Portal

Paul MageeCentre for Technology Enabled Health ResearchPart-time Yr 2Co-Researchers:   Communicate2uSupervisors:    Dr Gillian Ward     Dr Louise Moody     Dr Annette Roebuck(Co-)Re-Designing the Participant Information Sheet1. Background2. Aim & Objectives3. Participants - there are none7. Conclusions4. MethodsReferencesThe aim of this exercse is to re-design a PIS to inform and engage co-researchers.The objectives of this exercise are:• To co-develop a PIS with PWLD• To develop a co-designed symbols of research practice• To produce a prototype PIS documentThis group exercise was designed to learn ways to communicate meanings of sections of thePIS but not to pre-define the design and ask for agreement. As a result, the booklet design stems from the co-researcher’s contributors. In summary:• Informal atmosphere was more comfortable for co-researchers• Co-researchers needed the freedom to participate intermitently• Creatively collaboration in small groups provided focus• Creative activity (badge designs) provided a mood of engagement • Priority should be on clarity of images, with relative sophistication• Flexible communication methods accounted for the group’s needs• The prescence of acquiescence bias may limit feedback from some co-researchers5. ResultsFor any research study it is vital to be clear about the activity involved in order that appropriate consideration may be applied for working practice, safety, and to fully inform participants. However, this assumes that information conveyed in a typical University approved document, would in turn it be read by participants whom would then supply the appropriate response to the researcher. This is not necessarily so. This research is focussed on the development of a new methodology to empower and enable People with Learning disabilities (PWLD) and developers to meaningfully collaborate, rather than as a token evaluation gesture. A working arrangement has been established based upon collaborator involvement at all stages, not only 'when required’, including design of the study structure (i.e. communication practices) and preliminary administration, such as a vital information source, the Participant Information sheet (PIS).The collaborators in this study, (referred to as co-researchers) and the exercise represented here, are members of Communicate2u (C2U), a social enterprise working with People With Learning Disablity (PWLD). C2U incorporate a diverse range of abilities and communication requirements and are involved in research and public governance issues of an otherwise marginalised user group. In the overall study and this exercise, there are no participants. Those based at C2U are co-researchers, engaged as an empowered provider of experiential knowledge. representing varied communication requirements such as those on the high functioning Autistic spectrum, mild to moderate learning disabilities and some restricted physical ability.Considering the format and content provision to inform C2U, the standard PIS did not provide a suitable balance of research relevant information, suitable ethical acceptance for University governance purposes and communication of the activity at an appropriate level of complexity. Therefore the PIS needed to be (co-)re-designed.Images TextRight-hand locationFontsize Bullet pointlistsResearcher photoInclude study contextConcisetextUniversity identityWhere are the pictures!?!ResearcherbackgroundPlain EnglishResearcheremail detailsFormatPhoto of UniversityPhoto of general usersDetailClarityA4 istoo bigA4 getsfoldedA5 is easyto holdThe results from this gathering have been split into 2 themes linked by document format:Inspired by the empowering techniques of Participatory Action Research (PAR) (Baum, 2006) and Experience Based Co-Design (EBCD) (Kings Fund, 2013), this exercise employed a series of co-design steps, key replicable requirements of collaboration and thematic analysis (Braun, 2006) to identify recommendations.The key elements applied are:• Performance of research song with whole group (reminder of research message)• The group is organised by an experienced facilitator using inclusive communication• An informal situation, planned to be non-academic• Engagement with a creative task (research badge created) to signify activity importance• Number of co-researchers in this exercise (n=4 to 6)• Typical timeframe of 45 minutes to collaborate• Activity based on capabilities of co-researchers (discussion, focus group, drama)• Thematically analysed results to identify experience-led insightsCommunicate2UU2 PWLD creative communicatorsin partnership with Coventry University6. Output - booklet designmy information booklet My name is PaulI am a researcher at Coventry UniversityWe would like to invite you to take part in a new research study Before you decide if you want to take part, it is important for you to understand why the research is being done and what you will do  Please take time to read this information booklet and talk about it with others if you wish You should only agree to take part in the study if, after reading this sheet, you are happy that you understand it and want to join in You do not have to take part if you don’t want toAnd you are still free to leave the study at any time and without giving a reasonPlease ask if you have any questions or if you would like more information or time to make up your mind. Co-production of a smartphone interface with people with mild and moderate learning disabilities. ???Who is involved?To join this study you need to have:  Experience of using a smartphone in day to day activity Ability to operate a touch screen device Age range 16 to 25 years Ability to provide feedback in English Ability to read text in English Will the information gathered be kept confidential?All information collected in the study will be recorded and stored securely and anonymously on a password-protected computer at Coventry University What will happen to the data obtained from the research study?  The lists are data that will be collected and read at Coventry UniversityData will be presented together for all the group, not each person The information might also be written up as a report for other researchers to read.  What do I have to do? We want to know what PWLD use their smartphone forAnd if there is a reason why PWLD don’t use a smartphoneWe want to know about the user experience of smartphones for PWLD To learn about this, we will share in groups what we think about smartphones If you think the smartphone experience is good, you can tell us. If the experience is not good, you can also tell us If you would like to carefully act out a smartphone experience, you can We will make a list of the good and not good experiences What risks are there?  If smartphone events are carefully acted out, care will be taken in the room. Chairs and tables will be moved as needed.Background of the Study A research study is a way to learn new things This study is a way to find out new things about People With Learning Disabilities (PWLD) and their smartphones We don’t think smartphones are made with PWLD in mind And we want to show that PWLD have ideas to make smartphones better People that use smartphones are called Smartphone Users (SU) We want to find a way to show makers of smartphones that working with PWLD can make better smartphones for all users We call this a better User Experience (UX). ideainclude meNameSignatureDateI have listened to Paul’s description of theresearch and below is what I am invited to do:Key requirements for co-designed PIS:• Clear, concise, well written information with detail• Splitting information into sections improves readability• Images can be quite sophisticated• Images must locate with the text they are communicating• Font size is important but relative to page size• A5 size booklets are preferred and have greater credibility Baum, F., MacDougall, C., and Smith, D. (2006) 'Participatory Action Research'. Journal of Epidemiology and Community Health 60 (10), 854-857Braun, V. and Clarke, V. (2006) 'Using Thematic Analysis in Psychology'. Qualitative Research in Psychology 3 (2), 77-101Experience Based Co-Design Toolkit, 2013. https://www.kingsfund.org.uk/projects/ebcd. Accessed 16022017.Fig.1 Research badge designFig.2 Thematic resultsFig. 3 A5 booklet layoutResearch

(Co-)Re-Designing the Participant Information Sheet

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(Co-)Re-Designing the Participant Information Sheet

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