Transcript Document
Inclusive Participatory Design: Guidelines for and Reflections on Involving Users with Disabilities in Design of Assistive Technologies Dr Jo Lumsden, Aston University [email protected] introduction… >500 million people around the world have some form of recognised disability associated with a mental, physical, or sensory deficiency scope for IT-based assistive technologies to enhance independence & quality of life… …but this requires researchers to invest time & effort in familiarising themselves with the domain of, needs, and specific capabilities of users with given disabilities challenging! call for direct involvement of end users in design process & more systematic approaches for doing this introduction contd.… conventional participatory user-centred design (UCD) methods can be challenging to apply when engaging individuals with impairments… …but imperative that such methods are employed because it is otherwise largely impossible for designers to understand users’ needs, appreciate implications of users’ capabilities, and design appropriately existing mobile assistive technology design for visually impaired little evidence of direct involvement of end users UCD, especially participatory design (PD), under-utilised in healthcare technology generation (especially for design)… …general lack of process elucidation in most existing studies focus of this talk… outline some challenges of inclusive participatory design for assistive technologies present collated set of guidelines reflect on application of the guidelines for design aspects in terms of two case studies discuss remaining challenges for participatory design approaches challenges of inclusive PD… need a good understanding of users’ needs and abilities complex given range of aspects of cognitive, physical and sensory capabilities, not just those related to target disability user attitudes to technology and own disability impact of degenerative disorders over time …and understanding/relating to the above can be hard for researchers multidisciplinary approaches increasing, where domain experts included to compensate for limited disability knowledge of technical team included as member of the research team, liaison or representative challenges of inclusive PD contd.… available population of target users is relatively small finding & recruiting participants can be hard lack of homogeneity means recruitment criteria need relaxed obtaining and maintaining informed consent is complex even more so over time if disability is degenerative (e.g., dementia) expert liaisons can cause problems in own right mismatched expectations, “lost in translation”, lack of motivation (no direct benefit to them) experimental/evaluation control may need to be relaxed heightened consequence of device failure during evaluation with disabled populations guidelines for inclusive PD of AT… work with existing support organisations finding & recruiting, variety of domain experts with motivation, appropriate & ethical treatment of members, premises for performing the research (familiar to participants albeit less control for researchers) assess users’ and experts’ needs, abilities & expectations take time to understand personal characteristics and motivations of individuals to gauge level of participation (can inform design process as well as design itself) – can help avoid mismatched expectations choose design/eval technique & analyse its requirements elicitation (above) is crucial to selection of appropriate “tools” and later adaptation, appreciate demands techniques place on participants relative to capabilities, recognise where the flexibility lies in the tool guidelines for inclusive PD of AT contd.… sympathetically adapt chosen approach creatively adapt chosen method to suit participants, learning via iterative application accommodate comorbidity issues when adapting approaches, don’t just compensate for primary disability, but additionally accommodate comorbidities; may even be possible to use technology to enable participation use metaphors & pertinent tangible objects to encourage and support envisioning of technology can prove crucial in assisting participants to envisage technology – especially innovative mobile technology – to visualise their ideas, and encourage creative thinking guidelines for inclusive PD of AT contd.… use non-technical (accessible) language mediate language according to communication and cognitive capacities of participants – facilitating effective understanding of unfamiliar concepts enhances participants’ contribution and increases mutual learning establish friendly atmosphere informal, friendly atmosphere to avoid overwhelming and to relax participants and stimulate contribution – predicated on development of trusted, professional relationship might mean loosening some methodological control/norms – influencing data collected evaluation based on case studies likely to be more powerful & feasible guidelines for inclusive PD of AT contd.… clearly communicate nature of participants’ involvement avoid harm of mismatched expectations, especially when expert is liaising attempt and refine approach after deploying a method, need to monitor effectiveness and revise based on observed practical use sensitivity developed and trust engendered in researchers during early research stages can have significant positive impact later evaluate technology in different contexts evaluate technology across contexts in which target users spend lives intro to case study #1 (SMART)… 22% of world’s population will be 60+ by 2050 healthcare reforms needed 285 million people worldwide with age-related macular degeneration (AMD) – most common cause of sight loss in UK progressive, degenerative disease severely affecting macula, vital for clear central vision link between diet & disease progression diet risk factors not easy to monitor in routine clinical appointments Self-Monitoring, Ability-Reactive Technology (SMART) for users with AMD to support dietary-based AMD progression retardation over time SMART… engage with support networks approached clinical experts for advice on how to engage AMD users user participation in research in ophthalmology was not democratised process we were proposing immersed ourselves in AMD community support groups – build trusted professional relationship with prospective participants highlighted individuals’ reluctance to participate in research due to misconception that they will be “used” rather than considered experts in living with their condition convince in word and action that we considered our participants experts and wanted to involve them as such later evidence that we changed their opinion of research involvement key to successful recruitment for subsequent stages SMART… engage with support networks afforded opportunity for communication of project, etc. all paperwork produced in various font sizes participants encouraged to review with support network before consenting SMART… focus groups impediment to involvement was travel small (but ideally sized) focus groups in local, familiar place (coffee shop) separate one-to-one interviews with clinicians (avoid “white coat syndrome”) formed around existing communities so effective atmosphere for stimulation and encouragement of group discussion focus groups launched participatory research start learning about our users’ lives, experiences, attitudes, coping strategies, and then finally opinions on proposed system helped us determine context and focus for later activities SMART… focus groups enthusiasm for tech was promising mutual learning would ultimately be key to endurance and success of project: “we are in a position where technology can help us” positive and inclusive reaction to proposed technology: “It could become by best friend. It would become my companion, give me an incentive and fill my day. […] I am gobsmacked to what technology can do and that I can be part of it” SMART… in-home observations differences in experiences of living with AMD differences in needs w.r.t. assistive technologies needed to achieve a true sense of “being there” experiencing their daily lives appreciation of daily coping strategies and tech requirements to inform design 4 focus group participants for in-home observational studies observed number of prominent trends/commonalities across all living arrangements fed into later method set-up and design itself reinforced importance of placing end users in central, inclusive role – without doing this, unable to relate SMART… participatory design chose PICTIVE PD to empower participation natural fit with identified user capabilities and objectives familiarity of materials allowed everyone to contribute equally works well with small groups group was small but representative suited to adaptation very relaxed structure accompanied by informal coffee chat – social benefit stimulated contribution and enhanced trusting relationship location mirror in-home environment (brightly lit & quiet) avoided cross-talk to combat comorbid hearing problems taxi-based return transport provided (avoid travel barriers) – reinforced importance of project & significance of contribution SMART… participatory design sessions commenced with summary and quick updates throughout – accommodate comorbidities participants dictated session length regularly double what we had planned adaptations included removing need to read/write from participants (researcher’s job) central design space + individual copies to accommodate personal reading angles heavy reliance on metaphors to explain concepts + devices to envisage application participants keen on mutual learning further engaged participants SMART… participatory design to avoid mismatched expectations, explained to participants: how design sessions allied to overall project scope; what subsequent phases would be; and the overall expected outcome from the current phase during one session, clinician was invited to join the group where the AMD participants explained their design choices to her outcome was specification in paper prototype form truly reflective process design team (researcher and participants) constantly adjusted output as they progressed participants not given homework between sessions but regularly phoned up to discuss their personal reflection SMART… participatory design reflected on process with participants “Interactive projects are exciting! Yes – I have seen first-hand the benefits of this type of research. I have felt very ‘responsible’ for the success of this project” “It was challenging, thought provoking and exciting! I would happily be involved in future projects of this nature. It has been a pleasure to be involved” SMART… involvement of clinical experts AMD participants, very positive and altruistic contrast to negativity of experts longer spent communicating goals to AMD individuals than clinical experts – perhaps accounts for difference in attitudinal response …maybe more time and care needs to be spent assessing experts’ needs, opinions, expectations, etc.? – natural but flawed assumption that they require less effort than the participants with disabilities maybe benefit to experts observing participants’ reaction – might enable more open mindedness and positivity? intro to case study #2 (ALEX)… functional illiteracy rates in 16-65 year olds in world’s richest countries is alarmingly high adult illiteracy social disability profound effect on individual’s capacity to function in society and on innovative and adaptive capacity of a country basic adult education marginalised compared to compulsory schooling barriers to engagement in community-based literacy education ALEX – a mobile Adult Literacy support application for EXperiential learning ALEX… engage with support networks worked with literacy organisations engaged involvement in terms of recruiting tutors and students conducted some of the work in their facilities (comfort zone) introduction within familiar environments put participants at ease and maximised their involvement without their involvement, social stigma associated with illiteracy would have made recruitment very hard facilitated later evaluation stages as well ALEX… engage with support networks very deliberate in efforts to ensure participants understood what was asked of them and project goals all textual information in language appropriate to literacy level all information presented verbally and students given chance to ask questions careful communication to tutors avoided mismatched expectations ALEX… focus groups key focus groups with tutors and students to understand aspects of the students’ lives, their coping strategies, etc. no impediment to participation other than self-belief, so ensured right “power” balance in small groups tutor group separate to student group to avoid intimidation or embarrassment learned so much about their circumstances and coping strategies that was crucial to process method and outcome value of experiential learning mobile tech status levelers clear support for mobile app consensus on functionality, and idea of constraints ALEX… participatory design tutors (1) & students (4) integrated reflected existing relationships tutors very positive about tech power balance PICTIVE PD to empower participation, avoiding lots of written material familiarity of materials allowed everyone to contribute equally PICTIVE was natural fit with identified user capabilities and objectives works well with small groups regular reminders that they were part of the design team, experts on their own needs continuous validation of input heavy reliance on images and graphics to communicate concepts and ideas ALEX… participatory design adaptation en route e.g., reduced session duration due to short attention span reflection of participation at end was positive: “as a group, we achieved something good that will help a lot of people” “[it was a] safe place to talk about issues, [I liked] being listened to, it was a friendly group, easy going, and learning about others” “[I liked being able to] help put down things that apply to our lives into the design” concluding reflections… far from older adults being technologically averse (common misconception) considerable scope for positive impact of technology if designed appropriately participatory UCD need not be costly certainly less than the cost of abject failure or fixes post-release! conducting this kind of work can present number of challenges – e.g., finding/recruiting participants, engaging participants with impairments appropriate engagement of user community and adaptation of method can overcome challenges and yield invaluable results concluding reflections… application of methods should be reflective and educational experience for all value of mutual learning mutual learning participants can feel relaxed and able to contribute without prior knowledge/expertise appropriately adapted, PICTIVE is really empowering evidenced across different “disabilities” strong bond between participants and researcher fundamental source of participant motivation and determination: “none of us want to let [researcher] down, so when we start this, we will keep on going, we got to prove it. We are the pioneers” AMD participants felt that this let them better relate to and feel part of a much younger, technologically-advanced generation challenges remaining… how do we “end” participatory processes? evidence of positive influence of participation cognisant of the potential negative effect that withdrawal of the process may have mission to consult with participants on how they think the process can be drawn to a close in as positive a way as possible empowering them to further influence the context of the research trust gained at the beginning has to be handled sensitively at the end for more information… Hakobyan, L., Lumsden, J., & O'Sullivan, D,. (2014), Older Adults with AMD as Co-Designers of an Assistive Mobile Application. International Journal of Mobile Human Computer Interaction (IJMHCI) 6.1: 54-70. Lumsden, J, Hakobyan, L., Leung, R. and O'Sullivan, D. (2014), Inclusive Participatory Design: Involving Users with Disabilities in the Design of Assistive Technologies. (Ed.), Encyclopedia of Computer Science and Technology, Taylor and Francis. Hakobyan L., Lumsden, J., O'Sullivan, D., & Bartlett, H., (2013), Designing a Mobile Diet Diary Application with and for Older Adults with AMD: A Case Study, in Proceedings of BCS-HCI '13, London, UK, Sept 9-13. Hakobyan L., Lumsden, J., & O'Sullivan, D., (2013), PICTIVE Participatory Design Process with Older Adults with AMD. In proceedings of iHCI '13, Dundalk, Ireland, June 12-13. Hakobyan, L., Lumsden, J., O'Sullivan, D. & Bartlett, H., (2012), Understanding the IT-Related Attitudes and Needs of Persons with Age-Related Macular Degeneration: A Case Study, in Proceedings of BCS-HCI 2012 People and Computers XXVI, London, UK, Sept 12-14, 239-244. Lumsden, J., Leung, R., D'Amours, D., and McDonald, D., (2010), ALEX©: A Mobile Adult Literacy Experiential Learning Application, International Journal of Mobile Learning and Organization (IJMLO) Special Issue on Mobile and Ubiquitous Technologies for Language Learning, 4(2), 172-19 Lumsden, J., Leung, R., and Fritz, J., (2005), Designing a Mobile Transcriber Application for Adult Literacy Education: A Case Study, in Proceedings of the IADIS International Conference on Mobile Learning 2005, 28th - 30th June, Qawra, Malta, pp. 16 – 23 Leung, R., Lumsden, J., and Fritz, J., (2006), Accommodating Special Needs Users in the Evaluation of an mLearning Application: A Case Study, in Proceedings of the IADIS Mobile Learning 2006 Conference, Dublin, 14 - 16 July, pp. 177-184 Thank you! Dr Jo Lumsden, Aston University [email protected]