Enabling the Participation of People with Parkinson's and Their Caregivers in Co-Inquiry around Collectivist Health Technologies

While user participation is central to HCI, co-inquiry takes this further by having participants direct and control research from conceptualisation to completion. We describe a co-inquiry, conducted over 16 months with a Parkinson's support group. We explored how the participation of members might be enabled across multiple stages of a research project, from the generation of research questions to the development of a prototype. Participants directed the research into developing alternative modes of information provision, resulting in ‘Parkinson’s Radio’ — a collectivist health information service produced and edited by members of the support group. We reflect on how we supported participation at different stages of the project and the successes and challenges faced by the team. We contribute insights into the design of collectivist health technologies for this group, and discuss opportunities and tensions for conducting co-inquiry in HCI research

Future Opportunities for IoT to Support People with Parkinson’s

Recent years have seen an explosion of internet of things (IoT) technologies being released to the market. There has also been an emerging interest in the potentials of IoT devices to support people with chronic health conditions. In this paper, we describe the results of engagements to scope the future potentials of IoT for supporting people with Parkinson’s. We ran a 2-day multi-disciplinary event with professionals with expertise in Parkinson’s and IoT, to explore the opportunities, challenges and benefits. We then ran 4 workshops, engaging 13 people with Parkinson’s and caregivers, to scope out the needs, values and desires that the community has for utilizing IoT to monitor their symptoms. This work contributes a set of considerations for future IoT solutions that might support people with Parkinson’s in better understanding their condition, through the provision of objective measurements that correspond to their, currently unmeasured, subjective experiences

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

The design and evaluation of novel technologies for the self monitoring and management of Parkinson's symptoms

PhD ThesisThis thesis explores how digital technologies might better support people with Parkinson’s (PwP) to take control of their condition, by engaging in self monitoring and management practices. The specific focus of this thesis is around issues managed by Speech and Language Therapists (SLTs) (namely drooling and speech and voice changes). Three case studies were used to explore the ways that different technologies might be configured to aid the self monitoring and management of these speech and drooling symptoms. The first case study describes an evaluation of PDCue, a wrist worn device to assist the self management of drooling through the use of a temporal cueing method, to increase swallowing frequency. This study showed evidence that drooling can be behaviourally self managed through cueing—like other symptoms of Parkinson’s such as gait freezing—and proved a viable first step towards re-considering the use of additional medications as a first option for drooling treatment. However, whilst this study proved successful in understanding the ways in which a simple, temporal cueing technique might support drooling management, it opened up questions around the ways in which PwP might use technology to actively think about and understand their condition through self monitoring, and use this information to support self management practices further. In response, the second case study describes the design and evaluation of LApp, an application to support both the self monitoring and management of vocal loudness issues through the use of an insitu cueing approach. The Google Glass was chosen as the platform to run the cueing method on, due to its technical capabilities as a multi-sensor, wearable platform, to analyse a constant stream of audio and provide real time visual prompts to support the wearer in increasing their volume at times when it is needed in conversation. This study highlighted how participants saw value in LApp in supporting their loudness issues, but also noted a desire for participants to understand more about their speech and the SLT strategies that they were required to do in order to improve it. The third case study drew upon this desire for increased understanding by developing and evaluating Speeching, which employed crowdsourcing through a smartphone application to support the self monitoring of speech and voice changes, through the provision of human feedback, and the subsequent effect that this feedback had on self management practices. This study yielded positive responses from participants, who valued the anonymous feedback from the crowd and the support that this provided them in configuring their home based speech practice. A final discussion chapter draws the 3 case studies together and discusses the lessons learned throughout the research. It discusses the overall research questions for the thesis in detail and describes the implications of the research for the wider HCI and medical communities. A framework is presented which aims to visualise the levels of agency that the studied technologies afforded and the levels of responsiveness required by participants to make sense of, and implement the information being provided by the devices in order to facilitate a change to the self monitoring and management practices. Through the design and evaluation of the described technologies and a synthesis of the findings across the span of the research, this thesis explores the ways in which PwP, with a diverse range of symptoms and related physical, social and emotional issues, might value digital technologies and their potential to facilitate new forms of self monitoring and self management in their everyday lives.The National Institute of Health Research (NIHR): The Engineering and Physical Sciences Research Council (EPSRC): Gordon Chapman Memorial Fund