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)

Participatory research with older adults with AMD:co-designing a SMART diet diary app

The global population of people aged 60 years and older is growing rapidly. In the UK, there are currently around 10 million people aged 65 and over, and the number is projected to rise by 50% in the next 20 years (RNIB, 2013). While ongoing advances in information technology (IT) are undoubtedly increasing the scope for IT to enhance and support older adults' daily living, the digital divide between older and younger adults - 43% of people below the age of 55 own and use a smartphone, compared to only 3% of people aged 65 and over (AgeUK, 2013) - raises concerns about the suitability of technological solutions for older adults, especially for older adults with impairments. Evidence suggests that sympathetic design of mobile technology does render it useful and acceptable to older adults: the key issue is, however, how best to achieve such sympathetic design when working with impaired older adults. We report here on a case study in order to outline the practicalities and highlight the benefits of participatory research for the design of sympathetic technology for (and importantly with) older adults with impairments

Older Adults with AMD as Co-Designers of an Assistive Mobile Application

In the UK, 20% of people aged 75 years and over are living with sight loss and age-related macular degeneration (AMD) is the most common cause of sight loss in the UK, impacting nearly 10% of those over 80; regrettably, these figures are expected to increase in coming decades as the population ages (RNIB, 2012). This paper reports on the authors’ design activities conducted for the purpose of informing the development of an assistive self-monitoring, ability-reactive technology (SMART) for older adults with AMD. The authors reflect on their experience of adopting and adapting the PICTIVE (Plastic Interface for Collaborative Technology Initiatives through Video Exploration) participatory design approach (Muller, 1992) to support effective design with and for their special needs user group, reflect on participants’ views of being part of the process, and discuss the design themes identified via their PD activities

Participatory design:how to engage older adults in participatory design activities

Ongoing advances in mobile technologies have the potential to improve independence and quality of life of older adults by supporting the delivery of personalised and ubiquitous healthcare solutions. The authors are actively engaged in participatory, user-focused research to create a mobile assistive healthcare-related intervention for persons with age-related macular degeneration (AMD): the authors report here on our participatory research in which participatory design (PD) has been positively adopted and adapted for the design of our mobile assistive technology. The authors discuss their work as a case study in order to outline the practicalities and highlight the benefits of participatory research for the design of technology for (and importantly with) older adults. The authors argue it is largely impossible to achieve informed and effective design and development of healthcare-related technologies without employing participatory approaches, and outline recommendations for engaging in participatory design with older adults (with impairments) based on practical experience

Keep Your Eyes above the Ball: Investigation of Virtual Reality (VR) Assistive Gaming for Age-Related Macular Degeneration (AMD) Visual Training

Humans are beyond all visual beings since most of the outside information is gathered through the visual system. When the aging process starts, visual functional damages become more and more common and the risk of developing visual impairment is higher. Age-related macular degeneration (AMD) is one of the main afflictions that leads to severe damage to the optical system due to the aging process. The ones affected lose the ability to use the central part of vision, essential for accurate visual information processing. Even if less accurate, peripheral vision remains unaffected, hence medical experts have developed training procedures to train patients to use peripheral vision instead to navigate their environment and continue their daily lives. This type of training is called eccentric viewing. However, there are several shortcomings in current approaches, such as not being engaging or individualizable enough nor cost and time-effective. The main scope of this dissertation was to find out if more engaging and individualizable methods can be used for peripheral training of AMD patients. The current work used virtual reality (VR) gaming to deliver AMD training; the first time such an approach was used for eccentric viewing training. In combination with eye-tracking, real-time individualized assistance was also achieved. Thanks to an integrated eye-tracker in the headset, concentric gaze-contingent stimuli were used to redirect the eyes toward an eccentric location. The concentric feature allowed participants to choose freely and individually their peripheral focus point. One study investigated the feasibility a VR system for individualized visual training of ophthalmic patients, two studies investigated two types of peripheral stimuli (three spatial cues and two optical distortions) and the last study was a case study looking into the feasibility of such an approach for a patient with late AMD. Changes in gaze directionality were observed in all the last three studies for one specific spatial cue, a concentric ring. In accordance with the literature, the gaze was directed spontaneously toward the most effective peripheral position. The last study additionally proved gaming feasible for future testing of the elderly AMD population. The current work opened the road to more individualized and engaging interventions for eccentric viewing training for late AMD

Occupational Engagement of Older Adults with Age-Related Vision Loss (ARVL): Understanding the Influences of Social Networks

The present study sought to understand how older adults’ social networks facilitate and constrain their engagement in meaningful occupations after being diagnosed with age-related vision loss (ARVL). A constructivist paradigm and narrative inquiry methodology were used to elicit and make sense of the participants’ unique stories. The participants consisted of five older adults 60 years and older, living with ARVL, including one of the following conditions; macular degeneration, glaucoma, and diabetic retinopathy. Participants were recruited from the Canadian National Institute for the Blind (CNIB) and Society for Learning and Retirement (SLR). Data was collected through three sessions of semi-structured, audio-recorded virtual interviews (via Zoom and telephone calls). Participants were inquired about their experiences of interacting with social networks and engaging in desired occupations while living with ARVL. Thematic and structural narrative analyses (Riesman, 2008) were performed on participants’ stories which identified the following five dominant themes: (1) Maintaining Engagement in Social Occupations to Foster a Sense of Belonging; (2) Diverse Social Networks Fulfill Different Occupational and Psychosocial Needs; (3) Retaining a Sense of Independence through Seeking Reciprocity in Social Relationships; (4) Community Mobility as Essential for Preserving Social Relationships; and (5) Technology as a Support to Social Connectedness: Connecting via Technology versus in Person. This research expands knowledge on ARVL-related barriers and facilitators to occupational engagement and highlights the benefits of social support in maintaining visually impaired older adults’ occupational goals. The future directions and implications of the study findings on future research and vision care services are also discussed

Visual Impairment and Blindness

Blindness and vision impairment affect at least 2.2 billion people worldwide with most individuals having a preventable vision impairment. The majority of people with vision impairment are older than 50 years, however, vision loss can affect people of all ages. Reduced eyesight can have major and long-lasting effects on all aspects of life, including daily personal activities, interacting with the community, school and work opportunities, and the ability to access public services. This book provides an overview of the effects of blindness and visual impairment in the context of the most common causes of blindness in older adults as well as children, including retinal disorders, cataracts, glaucoma, and macular or corneal degeneration

Creative Haptic Interface Design for the Aging Population

Audiovisual human-computer-interfaces still make up the majority of content to the public; however, haptic interfaces offer unique advantage over the dominant information infrastructure, particularly for users with a disability or diminishing cognitive and physical skills like the elderly. The tactile sense allows users to integrate new, unobstructive channels for digital information into their sensorium, one that is less likely to be overwhelmed compared to vision and audition. Haptics research focus on the development of hardware, improving resolution, modality, and fidelity of the actuators. Despite the technological limitations, haptic interfaces are shown to reinforce physical skill acquisition, therapy, and communication. This chapter will present key characteristics intuitive tactile interfaces should capture for elderly end-users; sample projects will showcase unique applications and designs that identify the limitations of the UI

Promoting and maintaining health of people with sight loss: A scoping study

This study was undertaken in response to a request by the Thomas Pocklington Trust to identify and explore the following issues: • The needs and concerns regarding immediate risks to health and safety related to sight loss; • Additional risks arising from sight loss for those who are also managing a long term disease; • The difficulties in maintaining and promoting health; • Whether or not health promotion activities and policies sufficiently address perceived needs. Findings pertaining to these objectives have been generated from data collected in Leeds, UK, a city where innovative programming for sight loss has either been planned or is being incorporated into health planning and a review of the literature. Findings related to the last two issues indicate that gaps exist in service provision for maintaining health and emphasise the need for more explicitly targeted health promotion initiatives that could address current weaknesses. - A review of the literature; - Focus group discussions with a range of people who had experienced sight loss; - Interviews with professional practitioners engaged in service provision to this population; - An expert hearing with four professional practitioners, one of whom had sight loss, and two service users with sight loss. Most participants were from the West Yorkshire region and the services described in the study are largely located in Leeds. Evidence from the literature review suggests that people with visual impairment have increased risk of accidents within the home and that ensuing consequences include injuries incurred and decreased confidence. Rates of depression among people who are blind or partially sighted are far higher than in the wider population and the likelihood of depression increases with age, although psycho-social interventions and technological assistance can be successfully implemented to improve quality of life. Sight loss together with other long term health conditions exacerbates the impact of other health conditions and has particularly severe impact on the wellbeing of older people insofar as it may affect their mobility, which in turn increases their risk of falls and depression. The nature and level of support available to people is variable but it is clear that access both to the right information at the right time and to appropriate services is a critical issue. Focus group discussions, interviews and the expert hearing corroborated and extended the themes noted in the literature and discuss the differential impact of different risks to health and the difficulties of coping with these at different times in a person’s life. A simple typology was defined using two dimensions of experience (‘stage of life’ and ‘early/late onset of sight loss’) as a means of organizing findings and providing a means of making further distinctions in interpreting the data. Potentially, this scheme can allow health promotion initiatives to be targeted more effectively to stages at which people with sight loss are more likely to encounter specific difficulties in managing and maintaining their health. There was a clear consensus throughout the study that interventions to meet the needs of people with sight loss must be tailored to meet the specific needs of individuals: people with sight loss are not a homogeneous group and the way in which each person experiences the challenges of sight loss and of managing their health will inevitably vary from person to person. Recommendations generated by this study include: • The scope for more pro-active services and need for closer collaboration between service providers; • The need for provision and promotion of targeted information; • The need for greater awareness of the needs of people with visual impairments among generic service providers; and • Further research that explores the usefulness of the typology with a larger sample more representative of population demographics such as BME communities that are more likely to slip through the cracks of service provision