Approaching Participatory Design in "Citizen Science"

This paper explores the use of participatory design methods in engaging older people in Citizen Science. Based on a pilot in a small Scottish town it looks at the application of designerly practices to bringing lay knowledge into professional practices around biological recording. Charting our journey, our initial focus on enabling people to collect biological data, with a focus on participatory methods and design thinking, and its evolution into work about what collecting biological participants enabled for participants. It captures reflections on well-being, mobility, changing environments and communities, and a growing confidence in themselves as experts in their own lives. The paper closes with some personal reflections on what we learnt as facilitators about the use of participatory methods. In particular the role of our own (and participants) tacit assumptions in framing approaches, and the need to open and flexible, to frame and reframe as process and outcomes shift

Engaging older adults with age-related macular degeneration in the design and evaluation of mobile assistive technologies

Ongoing advances in technology are undoubtedly increasing the scope for enhancing and supporting older adults’ daily living. The digital divide between older and younger adults, however, raises concerns about the suitability of technological solutions for older adults, especially for those with impairments. Taking older adults with Age-Related Macular Degeneration (AMD) – a progressive and degenerative disease of the eye – as a case study, the research reported in this dissertation considers how best to engage older adults in the design and evaluation of mobile assistive technologies to achieve sympathetic design of such technologies. Recognising the importance of good nutrition and the challenges involved in designing for people with AMD, this research followed a participatory and user-centred design (UCD) approach to develop a proof–of–concept diet diary application for people with AMD. Findings from initial knowledge elicitation activities contribute to the growing debate surrounding the issues on how older adults’ participation is initiated, planned and managed. Reflections on the application of the participatory design method highlighted a number of key strategies that can be applied to maintain empathic participatory design rapport with older adults and, subsequently, lead to the formulation of participatory design guidelines for effectively engaging older adults in design activities. Taking a novel approach, the final evaluation study contributed to the gap in the knowledge on how to bring closure to the participatory process in as positive a way as possible, cognisant of the potential negative effect that withdrawal of the participatory process may have on individuals. Based on the results of this study, we ascertain that (a) sympathetic design of technology with older adults will maximise technology acceptance and shows strong indicators for affecting behaviour change; and (b) being involved in the design and development of such technologies has the capacity to significantly improve the quality of life of older adults (with AMD)

Engaging older adults and people with dementia in the design of digital technologies

PhD ThesisImprovements in healthcare and nutrition have led to increased life expectancies for people around the world, and a growing need to support the larger numbers of older people living with chronic and age-related health conditions. Although the use of digital technologies is increasingly proposed for health and social care solutions, in practice the designers of these technologies are ill equipped to actively engage older people and in particular people with syndromes such as dementia. An examination of previous work on design for older people, and people with dementia, suggests that poor design arises from a gulf in knowledge and experience between the designers and their subjects. To address this divide the KITE participatory design method for engaging people with dementia in design is proposed. KITE facilitates engagement by structuring and scaffolding an empathic relationship between designers and their participants. The approach is elaborated and evaluated through an exercise to design a digital technology to help people with dementia have safe walking experiences. The analysis of this process leads to the formulation of the OASIS design method which is intended to apply to older people more generally. OASIS is evaluated and refined through a number of design studies for technologies to support healthy eating, day-to-day travelling needs and living safely within the community. Reflection on the application of the OASIS method highlights a number of key strategies that can be used to establish and maintain respectful, empathic, and productive participatory design relationships with older adults and people with dementia

Older People and Digital Technology From digital learners to digital leaders through participatory design with community-based organisations

PhDIt is predicted that there will be more people over the age of 65 than under 5 by 2050 in developed countries. In recognition of the needs of an ageing population, there is a growing field of research in HCI focused on engaging older people with digital technologies. This thesis contributes to the field of ageing in HCI through a community-based participatory design investigation into the challenges and opportunities for older people to engage with digital tools in their everyday lives. We demonstrate how the commitments, practices and values of participatory design can be used to better understand and foster engagement between digital tools and older people through the support of community-based organisations. This is achieved through two case studies. The rst study with a traditional computer class at a local day centre. The second with a London-based intergenerational running club. The research reflects on and examines the details and decisions of the learning and adoption process across these two studies. We expand our view beyond the digital tools to the influences and situations that contribute to older people's attitudes and usage. Through the lens of participatory design and communities of practice we discuss the considerations of values, problem-solving, and identity that can potentially be transferred to other non-traditional digital learning environments for older people. We provide recommendations and reflect on our challenges to serve as guidance for other researchers engaging in similar participatory work `in-the-wild'

Housing Voices: Using theatre and film to engage people in later life housing and health conversations

Purpose: Quality, accessible and appropriate housing is key to older people’s ability to live independently. The purpose of this paper is to understand older people’s housing aspirations and whether these are currently being met. Evidence suggests one in five households occupied by older people in England does not meet the standard of a decent home. The Building Research Establishment has calculated that poor housing costs the English National Health Service £1,4bn annually (Roys et al., 2016). Design/methodology/approach: This paper reports on the findings of a participatory theatre approach to engaging with those not often heard from – notably, those ageing without children and older people with primary responsibility for ageing relatives – about planning for housing decisions in later life. The project was led by an older people’s forum, Elders Council, with Skimstone Arts organisation and Northumbria University, in the north east of England. Findings: Findings suggest there is an urgent need to listen to and engage with people about their later life housing aspirations. There is also a need to use this evidence to inform housing, health and social care policy makers, practitioners, service commissioners and providers and product and service designers, to encourage older people to become informed and plan ahead. Research limitations/implications: Use of a participatory theatre approach facilitated people to explore their own decision making and identify the types of information and support they need to make critical decisions about their housing in later life. Such insights can generate evidence for future housing, social care and health needs. Findings endorse the recent Communities and Local Government (2018) Select Committee Inquiry and report on Housing for Older People and the need for a national strategy for older people’s housing. Originality/value: Although this call is evidenced through an English national case study, from within the context of global population ageing, it has international relevance

An Intersectional Lifecourse Lens and Participatory Methods as the Foundations for Co-Designing with and for Minoritised Older Adults

The design of digital technologies for older adults is often premised on deficit models of ageing that position older people as a homogenous group and as passive users of technology, with an overwhelming focus on meeting practical needs in older age. In response, a growing number of scholars in HCI and Science and Technology Studies (STS) are engaging with processes of co-design that situate older adults as experts in their own lives and as central to the design process. These scholars highlight how an essential first phase of co-design is understanding and foregrounding the lifeworlds, experiences and expertise of older adults. This paper responds to these calls, alongside the lack of consideration of minoritised older adults in co-design. It draws on the empirical findings from the first phase of the Connecting Through Culture As We Age project, which places twenty minoritised older adults who identify as disabled, and/or racially and/or socio-economically minoritised, at the centre of a digital innovation process. Through a case study approach, we focus on two of the minoritised older adults involved, to demonstrate the value of bringing together participatory methods with an interdisciplinary lifecourse lens. We highlight the power of this approach for understanding minoritised older adults’ relationships with technology, as shaped by experiences across the lifecourse, for building relationships, and ensuring their agency and voice underpin the co-design process

Guidelines Towards Better Participation of Older Adults in Software Development Processes using a new SPIRAL Method and Participatory Approach

This paper presents a new method of engaging older participants in the process of application and IT solutions development for older adults for emerging IT and tech startups. A new method called SPIRAL (Support for Participant Involvement in Rapid and Agile software development Labs) is proposed which adds both sustainability and flexibility to the development process with older adults. This method is based on the participatory approach and user empowerment of older adults with the aid of a bootstrapped Living Lab concept and it goes beyond well established user-centered and empathic design. SPIRAL provides strategies for direct involvement of older participants in the software development processes from the very early stage to support the agile approach with rapid prototyping, in particular in new and emerging startup environments with limited capabilities, including time, team and resources

How was it for you? Experiences of participatory design in the UK health service

Improving co-design methods implies that we need to understand those methods, paying attention to not only the effect of method choices on design outcomes, but also how methods affect the people involved in co-design. In this article, we explore participants' experiences from a year-long participatory health service design project to develop ‘Better Outpatient Services for Older People’. The project followed a defined method called experience-based design (EBD), which represented the state of the art in participatory service design within the UK National Health Service. A sample of participants in the project took part in semi-structured interviews reflecting on their involvement in and their feelings about the project. Our findings suggest that the EBD method that we employed was successful in establishing positive working relationships among the different groups of stakeholders (staff, patients, carers, advocates and design researchers), although conflicts remained throughout the project. Participants' experiences highlighted issues of wider relevance in such participatory design: cost versus benefit, sense of project momentum, locus of control, and assumptions about how change takes place in a complex environment. We propose tactics for dealing with these issues that inform the future development of techniques in user-centred healthcare design

Co-creative media: theorising digital storytelling as a platform for researching and developing participatory culture

This paper considers the question, 'what is co-creative media, and why is it a useful idea in social media research'? The term 'co-creative media' is now used by Creative Industries researchers at QUT to theoretically frame their use of digital storytelling as an action research platform for investigating participatory new media culture. Digital storytelling is a set of collaborative digital media production techniques that have been used to facilitate social participation in numerous Australian and international contexts. Digital storytelling has been adapted by Creative Industries researchers at QUT as a platform for researching the potential of vernacular creativity in a variety of contexts, including social inclusion of marginalized and disadvantaged groups; inclusion in public histories of narratives that might be overlooked; and articulation of voices that otherwise remain silent in the formulation of social and economic development strategies. The adaption of digital storytelling to different contexts has been shaped by the reflexive, recursive, and pragmatic requirements of action research. Amongst other things, this activity draws attention to the agency of researchers in facilitating these kinds of participatory media processes and outcomes. This discussion serves to problematise concepts of participatory media by introducing the term 'co-creative media' and differentiating these from other social media production practices

Conducting Co-Design with Older People in a Digital Setting: Methodological Reflections and Recommendations

Introduction: Co-design has been identified as a participatory method to create person-centred integrated healthcare services that align with older people’s values and lived experiences. Description: Existing guidelines on conducting co-design primarily focus on in-person methods with limited guidance on using digital methods to collect data. This gap in knowledge is particularly pertinent when co-designing with older people who can experience challenges with digital literacy and accessibility. This article uses the exemplar of a pilot site within a European co-design research project, aiming to create digital health technology to support integrated care, to describe the steps and considerations required when collaborating with older people in an online environment. Focus groups and one-to-one interviews were conducted utilising digital mediums of teleconferencing and telephone calls to engage and collaborate with older people. Discussion: Several preparatory steps are required to effectively bridge the digital divide and conduct co-design with older people including engaging gatekeepers, relationship and trust-building, assessing digital literacy levels, education and providing technological support. Conclusion: This article highlights the steps and considerations that researchers should be aware of when embarking on co-designing with older people in a digital setting. The authors describe their methods that promotes inclusivity and the empowerment of older people as equal collaborators in the research process. The co-design approach and recommendations can be applied to various research settings and wider areas of integrated care with this population